Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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Ten Hard Lessons I’ve Learned About Being Chronically Ill

February 5, 2014 at 1:14 am (Chronic Pain, Disability, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , )

I’ve been struggling with chronic pain and illness for over six years now. In that time, I’ve come to some difficult situations and choices, and for the most part had no source material to turn to. Being without a specific diagnosis means that there are less places to access wisdom by those who have gone before – I read some that share symptoms or challenges with my reality, but even those who have a name for what’s going on find that there are times when your only choice is to struggle through and make the best choices you can. Sometimes we choose wrong; we do something that makes things worse, or we choose a doctor who treats us poorly, or our behavior during times of stress alienates the very people who want to support you the most.

These lessons are by no means definitive, or the only lessons I’ve learned, but instead I’ve chosen these because in hindsight I really wish someone would have given me advice (or even a clue!) in hopes of avoiding some of the inherent pitfalls involved.

10. There is a difference between someone who wants to help you, and those who want to solve your problems.

The people who have been the most supportive in times of difficulty are the ones who chose to assist me specifically so I could do more for myself. The ones who end up burned out and resentful are the ones who chose to do things in hopes of either doing things for me, or doing things with the expectation that things will get better in some form of permanent fashion. I could continually ask people to scratch my back, or someone could buy me a backscratcher. (And here’s where I thank the anonymous person who did exactly that.) You could volunteer to take dictation when I can’t type, or you can help me find dictation software I like or suggest another way of sharing my thoughts (like a podcast). This lesson taught me not only how to tell what a person’s intentions are (to help or to solve), but how to phrase requests in very specific ways so even those who are inclined towards solving end up doing things that make us both feel good. If I know you’re a “solver”, instead of asking for something nebulous (like, “I need a way to move my legs more without causing pain”), I take a little more time and ask for something more specific (“I need one of those cycle bikes that rest on the floor and have a motor, here is a link to a few I like on Amazon.”)

If I’m unsure of what the specific need is, that’s when I turn to the helpers. Because they are focused on supporting my independence as much as they are focused on the challenge at hand, their brainstorming will naturally drive itself towards choices that give me more freedom and less reliance on others.

I’m not saying one is bad and the other is good; I’m saying that in order to lean on my support system without burning everyone out, having a general sense of how someone feels helpful can expand and strengthen your team. Just like you go to Joe when you want to gossip, and choose to go shopping with Pat because they have a style sense that matches your own; knowing who is best qualified to get your through a hurdle makes it easier to ask and receive with the least amount of guilt. Which leads me to…

9. People generally want to help as much as they can; those that won’t or can’t will make themselves known.

It seemed somewhat obvious to list “Asking for help is hard”, because you don’t need to be chronically ill to know that. What I’ve learned about opening myself up to receive help when I need it is that sometimes the “obvious” choice isn’t the right one. One of my people who drive me to doctor’s appointments comes from 3 hours away to do so, usually coming in the night before and leaving that evening. They’ve done this even when my appointment is less than 20 minutes from my house. I have tons of friends who live closer, but many of them have legitimate reasons why they can’t help out. Before I figured this out, I would totally freak out when I thought I knew the absolute “right” person for the job, only to have them decline or just not respond to my requests for help.

Another facet of this lesson is that although it can be downright frightening to be honest about something you need – especially if it requires large amounts of resources like time, money, or commitment – it’s better to be forthright. Even if someone can’t solve the whole problem, they may be able to help you by breaking the ask down to smaller chunks and delegating it to a larger pool of people. It might be difficult for someone to drive to my house, then drive to a doctor’s appointment two hours away, take me home, and then go back to their house. Instead, maybe one person picks you up and drops you off; another gets you at the docs and takes you halfway home, where someone who normally makes that commute can take you the rest of the way. Or if you need to clean house because you’re having a party, instead of asking one person to come the day before and help you out, you can throw a “pre-party meet-and-clean” so your shy friends can both do something helpful and get to know a smaller group of people before the throngs show up.

Before I learned that, though, I would frequently ask not for what I needed, but for what I thought people wouldn’t be offended by when I asked. I had to learn the very hard way that although it might be easier to ask for someone to drop me off somewhere and I’ll just use my walker to get around; if I wake up that morning and my arms aren’t up to the walker, I’m totally screwed unless my friend is physically able to deal with the wheelchair and has the time to stick around for my whole appointment. Or if I needed money to cover some over-the-counter medical stuff, I would sit and agonize over what I “really needed” and what I could “live without” or “make due”. Usually, someone would find out that I was using duct tape to hold bandages on or stealing alcohol wipes from the doctor’s office. They’d sit me down and remind me that people generally want to help, because knowing that their friend is in a bad way makes them feel helpless. Giving them the opportunity to make a difference makes them feel like they’re really doing something.

I also had to learn that there are people who will tell you many times that you can call them anytime if you need anything, but they are only being polite. In fact, I think one of the reasons that chronically ill people usually dismiss vague offers of help like these is because we’ve learned that there’s a good chance they won’t come through. Not necessarily because they don’t care or don’t want to (although there are people who don’t), but because they don’t have the resources or ability to help in the ways you need. You just get to a point where you know asking is a waste of time, even if you think they might be a good choice for one reason or another.

8. If your friend has stopped inviting you to fun group things, it is sometimes okay to check in and ask why.

If you’re wracking your brain to remember what you might have done to offend someone, because all of a sudden you’re no longer “on the list”, it could very well be because you weren’t able to attend enough other events because you didn’t feel well. Or maybe because the place where the party is a fourth-floor walkup. Or maybe because they know you don’t drink and so inviting you to the bar seems mean. And honestly, sometimes they’re worried about reminding you about all the cool stuff your friends are doing that you can’t participate in anymore.

I tend to tell people that these days, I see an invite as a way of saying, “We want you to know you are wanted”. Even if it’s obvious that I can’t participate, just knowing that when they were thinking of the top 25 people they want to go skydiving with, you’re number 23. Sometimes, I use the opportunity to see if some sort of adaptation can be made so I’m included – my friend has an upcoming birthday bash, but her apartment is up several flights of stairs; I asked her if maybe a day-after brunch could happen in a wheelie-friendly restaurant. Done! Other times, people are being too cautious about what I can and can’t do; I might have to bring a chair and take lots of breaks, but I am able to go to the bonfire in the woods given enough time.

7. If you’re feeling left out of fun things, make fun things happen in places and ways you can handle.

There are lots of times when I’ve been home on a weekend night, mooning over all the cool things people on Facebook are claiming to do that I can’t for one reason or another. And it’s not always about health/ability; I might not have the money, or couldn’t find a ride, or required me to RSVP too far in advance. Honestly, it didn’t occur to me right away that the answer was to take charge and plan fun things that were tailored to my needs. Now that I live in a completely-accessible place (thank the Gods!), I have been hosting more stuff. Not only do I know the place is accessible, but if I need a quick breather or if I get a bout of nausea/vertigo/pain/etc, I can duck into my room for a little bit and let my guests entertain themselves. And if I need to check out of the festivities completely, it doesn’t mean everyone has to leave. I just elect someone to take over hosting duties and disappear into the Del Cave.

And if the fun things that I want to do are location specific (like going to the Drive In), I can do my homework to make sure the place is accessible. I can also set up somewhere to be the Temporary Del Cave, whether it be in the car, in a friend’s spare room, or even the handicap stall. I tend not to carpool, so if I need to check out early no one else is inconvenienced (except whomever’s driving). If food is going to be part of the fun, I can call ahead to see if the food on premises is Del-safe; if not, I can usually find a small thing to pick at and bring food to eat on the way home. Even if I am worried that I will have to cancel last minute, I can make sure that people are as invested in doing the fun thing as much as seeing Del at the fun thing, so if I have to back out I know people are still having fun.

Even when I’m at my sickest, I’ve still entertained guests. I just make sure they’re informed up front that I’m not doing well and they should bring things to entertain themselves, or maybe even make plans to go be a tourist or go shopping at the Outlet Mall, so I don’t feel like they’re sitting outside my bedroom door breathlessly waiting for me to feel social again. That way, we both get to spend some time together, and no one feels mislead or guilty if I need a nap. It doesn’t hurt that we have wi fi and an off-brand Roku device, as well as tons of odd books to read. The town we live in has a few cool things to do, and we’re pretty close to places like Gettysburg and Baltimore if you really want to get your tourist on.

6. Needing a lot of down time, alone, can be spiritually enriching.

At first, any time I had bodily-enforced down time, my gut reaction was distraction. What book can I read, what show can I watch, what silly online game can I get lost in? Those are still good stand-by distractions, but when I’m experiencing more down time than up time, it can feel like I’m wasting my life. It only emphasizes all the things I wish I could be doing, or things I expected myself to be doing at this age that have been replaced with this stupid reality I did not want nor asked for. I start slipping down that greased slope towards the maw of depression. Depression brings it’s own symptoms and challenges, and it complicates your health situation that way. I struggled a lot with depression last year, but what became the rope ladder that got me going in the right direction was finding purpose in my rest. I re-started my meditative practice. I found some great online videos of seated yoga, wherein the guide repeatedly tells you that if a pose or stretch is painful, to just breathe and wait for the next one. I began sitting in front of my altars and just letting my mind wander. I began writing for the sake of writing, instead of feeling pressured to cater every word towards a goal – a new post, a new class, a new ritual, etc. I started a personal diary.

The more I found the usefulness in stillness, the more I began to see bodily-enforced down time as something to look forward to. It let me choose to slow down, even if I didn’t have to, which helps keep me from overdoing it. Even if I’m away from home, being able to find a quiet place to sit by myself and just listen to the nature around me can help me enough so I don’t have to run home at the first sign of discomfort.

It also helped me clear out some cobwebs in my Godphone pipeline. Whodathunk it was easier to hear the Gods when you weren’t constantly doing things or thinking things? It also gave me the joy of feeling the presence of my Gods when I didn’t need them; to be able to sit and commune with them without any goal or purpose other than to be. It fills my heart with joy when I have the distinct pleasure of sharing my life with my Gods, even when all I can do is lay in bed and open myself to them. It has definitely strengthened my bond with Hel, who quite enjoys my company and a cup of tea from time to time.

Just finding ways that make stillness productive in its own way, while still being relaxing and stressless, makes me appreciate that my body reminds me to do it from time to time.

5. Be honest, with yourself and with others, about how much time you can spend with them, and how you want to spend that time.

Maybe I’m in the minority, but I would rather have one incredibly long and windy phone call a month than seventy billion text messages a day. Not only do I know it is very likely I can find an hour to commit to said phone call, but it just feeds me better. I see text messages as a tool of necessity – I’ll be there in 20 minutes, Do you know BobJo’s phone number, Are you free for a phone call tomorrow, that sort of thing. This is also why I am rarely signed on to any online chat service. It feels too demanding – answer now or I will ask you sixty times if you’re still there!

It also means that if I’ve just spent a whole weekend with you in person, I can guarantee that I will spend the next week in lots of down time. I value in person time quite a bit, but I’m also content if it only happens once or twice a year. I understand that we all have busier lives now, and the convenience of immediate communication in McNugget sized bites is undeniable, but it just doesn’t feel right for me. I know this paints me as a luddite, and I don’t care. I care so much more about the quality of the time we spend together, doing things that we will remember and that matter to us, than trying to live up to demands of being always accessible and immediately responsive to all of the people who matter to me, all of the time. I am one of a few people I know who not only shuts off my phone from time to time, but I also leave it at home! Aghast, I know! (It may sound a bit crass, but now that both of my parents are dead, I no longer worry about there being an emergency I need to know about right away. I figure there’s nothing I can do about an emergency that can’t be done when I turn my phone back on, or check my email, etc.)

I know that I’ve been shit about answering email, but I’m making a real effort to get better about that. It’s not going to happen overnight, though. I get a lot of email, and the majority of it is the kind that implies a timely and personal response. I am also working on organizing my inbox so messages don’t fade into the abyss that is “the next page”, buried under reminders that Barnes and Noble is having a sale this week. I decided to focus on email because I enjoy exchanging written words with people; and email no longer comes with the expectation of an immediate response (unless it says so). I find that even if someone assumes everyone answers email in 24 hours or less, as long as I send them a thoughtful response that shows I took my time to think about what I wanted to say, I’m usually forgiven.

The point I’m trying to make here, though, is that no one has the right to dictate how you spend your time but you. Obviously, some kinds of relationships will want more time than others, but even then I consider quality over quantity.

4. “Go to the doctors” is not a solution of any sort.

Often, when I write about my symptoms, especially when I am worried about what they might mean, people tell me to see a doctor. On the outside, it makes sense. But the part that makes me want to pull my hair out is when people expect that a single doctor’s visit will somehow provide anything resembling answers. No matter how much information you bring with you, no matter if you write down your symptoms and questions beforehand, no matter if you’re self-educated about your condition or what tests might be necessary to figure out what’s going on, doctor’s appointments are rarely about answers. It only seems to apply if you’ve been seeing a doctor on a regular basis, have limited discussions to a certain subset of your symptoms, and have undergone tests and studies and what have you; then, maybe there might be some sort of resolution like surgery or treatment. 90% of my doctor’s appointments go exactly the same way; I come prepared to discuss my symptoms (including how they are limiting my ability to live life), and the doctor orders tests. The tests come back, and if I win the doctor lottery the first round of tests *might* show something treatable. Most of the time, it’s the beginning of a long road, where you are referred to several specialists, who all start from ground zero (because they don’t rely on prior doctor’s thoughts or opinions).

One of the biggest issues I’ve faced with the “go to the doctors” conundrum is along the way, someone will find an actual problem. In fact, I’m willing to bet that the more doctors you see, the higher the likelyhood that they will find something. This sounds like a positive thing, and in a way it is. It was good to know I had a giant abscess in my abdomen that needed to be removed. But it also meant that for the next ten months, it was the only thing I saw doctors for. Time and money being limited, it meant that I failed to follow up on tests from my neurologist, endocrinologist, and all the other specialists that weren’t related to the abscess. When I finally have the time to go back to these other specialists, I am always chastised for the lapse. Some tell me that I’m obviously not serious about finding treatment, and tell me to see another doctor.

On top of all of that, when I’m brutually honest with a doctor about the time issues involved, they act like they should be my only focus. I had been cleared for an uterine ablation three years ago (and I really need one), but the problem has always been that I have to schedule it four or more months in advance. By the time the surgery rolls around, I’m almost always in the hospital or about to be, for something completely unrelated. I have cancelled four ablation appointments so far. When I tell my OBGYN that the only way this will happen is if I can get it sooner, they act like I am asking for VIP treatment.

Another example: I saw a new neurologist last week, and I’m pretty excited about working with him. But I told him up front that I’m in a time where I can chase tests and make appointments and such, but that time is finite. I already know I have a new abscess growing in my abdomen, and there are a few other medical situations that are getting more serious. I explained to him one of the reasons I haven’t been able to get a diagnosis is because the doctor takes too much time to order and review tests and by then I have something more urgent to attend to. So what did he do? Schedule a test for a month from now, and a follow up two months from now. As I’m seeing my PCP this week about some stuff I am pretty sure will be determined to be more urgent, I might as well not bother.

Even with excellent insurance, there is a financial cost to all of this test chasing and multiple appointments too. I have to have money for gas, parking, and sometimes have to pay my driver. I frequently have to pay a fee so I can get copies of the results for other doctors (although this has gotten better since concentrating most of my specialists and my PCP through Johns Hopkins, since they have an electronic patient folder system where they can see what everyone else is doing). There are other kinds of costs, too, like spoons. I am worth absolutely nothing on a day when I have a doctor’s appointment, and doubly so if there some sort of test. Although Rave helps me a lot, I still spend time making the appointments, finding someone to take me, figuring out what I need to bring, if I need to fast or not eat certain foods, knowing and bringing what I need for comfort, etc. And none of that even covers the times I do all of this only to find out I can’t be seen, or if the machine won’t accomodate me, or if there’s no point to the appointment because the doctor hasn’t received the results yet. It’s ridiculous.

So yeah, when someone suggests I “go see the doctor”? I just laugh quietly to myself.

3. You are the only arbiter of what you put in your body/what you do with your body, and you don’t have to answer to anyone about it.

I can’t even begin to tell you how much shit I’ve been given about choosing to take opiates for pain management. Or about taking antidepressants (even though I take the kind I do because it also helps with nerve pain). Or about not eating healthy food every single minute of every day. Or about having an alcoholic drink (a single one) once every six months or so. Or about which supplements/vitamins/homeopathic remedies I should or should not be taking. Or people sending me articles about new medicines or treatments with the expectation that I will immediately talk to my doctor about it. And as those who have read the rules of this blog already know, I get tons and tons of people recommending alternative therapies, from yoga to acupuncture or reiki to magnets.

It can be difficult, because most of these people are legitimately concerned about your health and well being. They’re not trying to be obnoxious or naive. It is something they can do that makes them feel helpful. And oftentimes, they actually do know someone personally who has benefited from these choices in some way.

My decision has always been about quality of life over quantity of life. When I found myself breaking down into tears because the restrictive diet I agreed to try denied me the pleasure of having ice cream when I wanted it, (and this may sound juvenile but it is absolutely true) that I didn’t want to live if it meant I couldn’t gain what little comfort I can. I have been weaned off of opiates, and my quality of life went to zero (and doctors made the decision to put me back on, and chided me for agreeing to go off in the first place). I’ve tried to be open minded about alternative therapies, but especially now that I’m on a fixed income, I don’t have a ton of money I can invest in something that only has a small chance of making a difference. I can’t afford to shop in exclusive, trendy supermarkets in order to stick to a nutrition plan, especially if I don’t like what I do get to eat.

I make choices that don’t take my health into consideration. Everyone does. Whether it’s opting to forgo an exercise regimen, or getting tattoos when it may increase your chance of infection, or eating something knowing full well your body will hate you for it tomorrow,  or skipping a meal every day in order to fit into that killer dress this weekend, it’s not hard to find examples of people making personal choices about how they treat their bodies that we might not agree with. Just because I am chronically ill does not mean I surrender the same right. I have to pay the same piper everyone else does. A life that is devoid of pleasure, comfort, and the occasional indulgence is practically inhumane, in my honest opinion.

3. If all you talk/write about is being sick, then the only thing people will know about you is that you’re sick.

Being chronically ill or in chronic pain is a very lonely thing. It is full of complex emotions and challenging moments that one really needs social support to endure. It can be liberating to express your inner dialog – your fears, your frustrations, your sadness, your oddly funny moments – so people might better understand what it’s like. It can help when your words encourage others to share similar stories, or even just leave a “I feel that way too” comment on something you wrote in a moment of despair. I would never, ever discourage someone from finding ways to communicate their struggle that ultimately help them face their illness with more resolve.

But before I started my second blog, most of my friends and acquaintances used this blog as their sole source for keeping in touch with me. As I consider this a blog – a place where I have a general topic and all of my writing ties into that topic in some way – everything I shared related in some way to either my personal experiences being chronically ill, or my insights about chronic illness and spirituality and the intersection thereof. However, many of those friends thought this was more like a journal – an accounting of my day to day life experiences – they began to think that I was consumed by illness and did nothing but go to doctor’s appointments and sit at home in pain. They didn’t call or write or visit because they were afraid to impose themselves, what with me being sick and all. I even had some professional issues because of this blog, where people refused to hire me or offered me smaller contracts so as to not overtax me. I realized that the blog had become a real issue, and I had to do something to remind people that I am still a dynamic, passionate, and lively person who has a lot of life to live yet. One of the solutions was to start Sex, Gods, and Rock Starsand take some time to promote it and build a following of folks who were only reading this blog because it was my sole expression online. It has been a real challenge, as making sure I am writing enough to keep both projects worthwhile (and to fulfill the Purposes for both – including my spiritual agreements about them). Sometimes I write more here, and sometimes there, and sometimes neither site gets updated for a while. But in the end, it has helped tremendously in creating a more realistic image of who I am as a well rounded and vital person who happens to also have chronic pain/disabilities.

2. It takes time to accept that the likely hood of “getting better” is not that great; not only do you need to accept it, but those closest to you need to, too.

Obviously, this is not applicable to every chronically ill person in the whole world; you may have relapsing-remitting MS where there will be periods of time where you feel pretty healthy. Or in a year from now, scientists will make a big discovery about your illness and there may be better treatments or even a cure. It’s possible that after years of not knowing what was making you feel so poorly, the right doctor will stumble onto a diagnosis that has known treatments to alleviate your suffering.

But for me, I’ve radically accepted that I don’t know what tomorrow will bring. At the same time, I have no delusions that it will take one thing to completely treat my suffering and sickness. Even if I got a diagnosis, the chances of it being something curable are pretty slim at this point – I’ve been tested for most of that stuff already. When those closest to me string their hopes on a someday cure, it makes me feel like they are not only ignoring the present but that they aren’t paying real attention to my journey thus far. There’s optimism, and there’s self-delusion. I’m optimistic that someday doctors will know why I feel sick/pain that may lead to more targeted treatments, but I also accept that if that happens some of those treatments are things I’m already doing (like pain management) and others will almost definitely take time before they work. I mean, knowing you have cancer doesn’t mean that in a week you’ll be completely cured.

I need people who can dig in and see the reality of today alongside me. I can really only deal with this in small chunks – maybe not quite “one day at a time”, but close – and if all you want to talk about is some nebulous future, I can’t relate to that at all. Deep inside of that optimism, too, there are crunchy bits of judgement (if you only took this more seriously, you’d already have a diagnosis/treatment) and denial (it’s not possible to have these symptoms and there be no singular cause). I have lost important people in my life because they failed to accept the reality of what is, rather than keep their eyes shut tight, hoping for the pipe dream of tomorrow.

It also subtly communicates that the lack of a panacea is my fault – I’m not choosing the right doctors, getting the right tests, chasing the right diagnoses, talking about the right symptoms, etc.

One of the relationships I had to end because of this kind of thinking was my therapist. I sought him out to be someone I could work through my feelings about my medical situation with, but by the fifth session he was so frustrated that my doctors had failed to diagnose my “obvious case of MS” that I had to ask him to stop yelling. The next few sessions comprised of me gently encouraging him to be patient with the process, and when I finally realized I had become his therapist, I ended the relationship.

1. Do whatever you have to do to survive. 

I mean this literally and figuratively. Even if you hate taking daily medication (or in my case, testing my blood sugar four times a day), if it makes your life an easier place to live, it’s worth it. If you are starting to hate or mistrust your doctor, get a new one. Ending relationships that only complicate your life and cause you more stress and pain may be difficult, but if it will eventually make it easier to get through the day, do it. Taking a break from seeing doctors because you need to save the money you usually use for co-pays in order to pay rent/buy food/pay bills can be a legitimate decision. Telling your doctor that a medication is on your insurance’s third tier (the most expensive one) and that you need a less expensive option is completely understandable. Finding plans or cards from pharmaceutical companies that will net you discounts on your meds might make your doctor sigh because OMG paperwork, but ignore their huffing and bring it anyway. Asking your friends to remind you of cool memories so you can read them when you’re in despair is not selfish or self-centered. Saying “no” to a doctor is always an option. So is “I want a second (or third, fourth, fifth) opinion”. Refusing to settle for a physician’s assistant and wanting to see the MD in your doc’s office makes sense if you’re medically complicated. Late night trips to the ER because you are in excruciating pain, or having a symptom that is scaring you (like chest pains or not being able to take a full breath) are not wasteful.

Don’t let anyone ever make you feel bad for making the best choices you could, given your resources and knowledge. 

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Contemplation and Dedication

December 30, 2013 at 2:18 am (Chronic Pain, Living, Living With Chronic Illness, Mental Health, Spiritual, The Panniculectomy, Uncategorized) (, , , , , , , , , , , , , , , , , , , , , , )

Today will be a year and a day since my ordeal. It has been a very difficult, draining, painful year. I have suffered so many different kinds of loss that I don’t know if I can cleanly separate one from another. They have come at me from every direction, from places I would have never suspected, and in ways that only made any sort of sense in retrospect. I spent a lot of time mourning. This should have surprised me a lot less than it did, having struck a complex and winding deal with Death herself, but I’m still a Fool who bumbles forward ignoring all the big “Dead End” signs along the way.

And then, a few days ago, a very small light was lit. I spoke to Hel directly, and the best way to describe what happened would be that I got my “annual review”. We spoke about times when I truly contemplated in the way She had asked, and times when I did everything I could to avoid said contemplation. She showed me in that transpersonal yet compassionate way how each distraction from my Purpose had been removed. It sometimes felt like a student of meditation getting wacked on the knuckles every time they were obviously not focusing. But I learn the best lessons through pain, both emotional and physical, so it’s not like She was speaking a foreign language.

After we went through the Year of Contemplation, I asked if my failures and misdeeds meant that I had to Contemplate for another year again. “Oh no”, She replies with a slightly amused grin, “It’s not like when a new lesson begins, the old ones end. It just means you are building upon the foundation, and contemplation was the first layer.” Oh yippie skippy.

The next theme came to me slowly. I saw some opportunities start to swirl and manifest around me, and having learned some of my lesson, I wondered if this was a test to see if I would give in to another diversion. As quickly as I could, I went back to Her and asked for clarification. I’ve made enough terrible mistakes already; I was willing to risk being told to figure it out on my own if it meant She might share more insight.

That’s when 2014’s theme was given to me, much in the same way that 2013 was the Year of Contemplation. This year is to be the Year of Dedication. I will still spend much time, likely even more than last year, in spiritual contemplation, but I will also be taking on the responsibilities of sorting out what people/places/things fall within my calling, and which ones only serve as distractions or hidey-holes where I can run away from the difficulties of my station. Some of the plans I have for 2014 have already shown how they are part of my Dedication, and other plans have already been deemed unfit.

I am still sorting out one aspect of Dedication, and I think my confusion is because I really want Her to give me a straight answer, and She wants me to find the right answer on my own. When I first was in preparation for the ordeal, I knew that She wanted some form of oath or promise that would bind me to Her. I had first toyed with the idea of becoming Her consort or spouse, and honestly the reason I didn’t explore that further was because I listened to someone I shouldn’t have who had big stakes in the outcome of that decision. But now I am unfettered (for the most part) and the question lays on the table again. For now, I am offering her my celibacy, which is going to be a very big challenge for me. For I am not only forgoing sexual contact as part of this experiment, but I am also consciously not looking or even really fantasizing about finding a new lover. (Right now, I have a mostly non-sexual relationship with Rave, and a few romantic relationships that are not only long distance, but that I rarely ever see; so the temptation has been present to try to find a new dating situation of some sort.) What I understand as the long term goal of this experiment has less to do with establishing a sexual or romantic relationship with Hel, and more about accepting the reality of my life at 40 years old.

I have tried, more than a few times, to establish a “family”. In some cases, I married or created a partnership with a person whom I felt was able and willing to establish a family unit with, only to have the relationships fall apart and with that, a complete cut-off from their life. Other than that, I have tried starting covens, communal families of choice, and other group dynamics that focused on a long-term familial devotion to one another, but most of them (really, save one) have all eventually given in to entropy. I know this yearning for family is partially due to the instability of my childhood; and that has become even more of an issue with my mother’s passing early in December. I have never met my father’s extended family, and my maternal one has become estranged from me over time. The feeling is even stronger and sadder now that both of my parents are dead; even my brother voiced his concern to me that without my mother, we may all lose touch with each other.

I also have always wanted children. I had the opportunity once when I was much younger, but I opted out thinking that I would someday reach a more stable relationship in which to bring offspring. I have tried, both in the unofficial “hey, let’s just stop using protection” path, as well as with a more formal “let’s track my ovulation and basal body temperature and have sex when things look ripe for it”, and other than a few miscarriages it just never happened. Now I am having unmistakable signs of perimenopause, and I don’t have a fertile partner of the right biological sex in order to give it one last try. And even if I did, my life is just not conducive to the responsibilities inherent in having a child, which is why adoption is not an alternative. My best hopes is to try to remain an active part of my godson’s lives, and accept my childless lot.

It’s a lot to give up. When other people were dreaming of stellar careers and fancy trips, I’ve always had a far simpler vision of what I thought my life would be like. I just wanted a stable family life wherein all of the people involved had made a lifelong commitment to love and respect each other, and work collaboratively in raising some kick-ass children. I never really cared about what I would be doing or how much money we had, just that there were both adults and children in my life and that we had a loving, fun-filled home.

Then again, when I surrendered, first to Loki and later to Hel, I never asked for the family package. In fact, I consider myself lucky that I have been able to have the relationships I have experienced in the last fifteen years, and I have fond memories of all of them, even the ones that ended on bad terms. I know plenty of spirit workers who have been denied the opportunity to have mortal lovers at all, so I know they were a blessing. And there’s nothing written in stone that I won’t be able to have them in the future (yet); it’s just that I need to take this time to dedicate myself to the reality I am in, have been given, and to stop pining and/or trying to create a reality that is not mine to have. So the celibacy is less about not having sex (I am still allowed to masturbate, thank you Hel), and more about letting those dreams slowly rot on Her altar. If I were to take time to find and pursue a new lover, it would very much distract me from that process, and rekindle my hope.

And She has said that this is not forever, and that any changes to that I will have some say in. If Mx. Perfect-for-Del shows up, then part of that perfectness will have to be the understanding that sex is not on the table right away – not that it was with lovers in my past, either – and that my calling as Her shaman-and-sometimes-consort takes a huge precedence over any mortal, any day. It means that the tasks and responsibilities I take on this year as I begin to hone-in on what I am dedicating myself to are very much more important in terms of time, energy, focus, and availability. I will have to be very clear and unrelenting in my communication about what I am able to share with a lover, and if they can’t accept that, it’s better we know that up front, than spend a long time both hoping that things will somehow change.

I know that this year of dedication will be a lot of work. Not only personal work in the same way contemplation was, but also actual “must be awake, alert, and able to engage” types of work. My pain has been bad enough for the last two months that my doctor is very concerned, and I am also showing some early signs that I may have a new abscess. But part of what She wants from me is to find the balance between making time to do the things that allow me to be as functional as possible – like going to doctor’s appointments, seeking out therapies, eating well and getting what exercise I can tolerate, etc – but at the same time, not falling into another dark hole of counterproductive nothingness just because I feel shitty. I don’t know where that balance is quite yet, but I will sure be trying to find it.

I have so many other things to write about – obviously, my mother’s death being one of them – and honesty, I’ve started six or seven different entries and I eventually realize that I’m just not ready to share so openly yet. Another sad consequence of 2013 is that I had to learn to be much more circumspect about what I share online, as I have found more than once, someone using my words, my experiences, my life, etc as a way to attack, belittle, hurt, shame, or punish me. Some of the entries that I have deleted were purely emotional responses to such things, and I know that sort of pettiness does nothing but make me look like a jerk – I know this, because the people who did these things sure looked like jerks when they did it first. Instead, I am taking some time to note important thoughts, feelings, and insights, and when I am able to write from a less tumultuous perspective, I will get back into the swing of things.

But for now…

Hail Hel, Lady of Mercy and Patience.

Hail Hel, Who is as Warm as She is Cold.

Hail Hel, Who Loves Silly Fools Who Take Too Long To Learn.

Hail Hel, Giver of Life and Death in Equal Measure.

Hail Hel, Entropic Transformation.

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Home

June 11, 2013 at 2:06 am (Disability, Living, Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , )

When I think of home
I think of a place where there’s love overflowing
I wish I was home
I wish I was back there with the things I been knowing

Wind that makes the tall trees bend into leaning
Suddenly the snowflakes that fall have a meaning
Sprinklin’ the scene, makes it all clean

Maybe there’s a chance for me to go back there
Now that I have some direction
It would sure be nice to be back home
Where there’s love and affection
And just maybe I can convince time to slow up
Giving me enough time in my life to grow up
Time be my friend, let me start again

Suddenly my world has changed it’s face
But I still know where I’m going
I have had my mind spun around in space
And yet I’ve watched it growing

~”Home”, The Wiz

I’ve been spending a lot of time here in the Apartment at the End of the Universe, as my current health situation requires it. I’m still healing a wound from the inside out, in hopes that by doing so it will create scar tissue where I’ve been developing these abscesses. I’ve been attached to a machine called a Wound VAC, that basically sucks out the fluid from the wound, helping it heal faster and keeping any pockets from forming. I have a nurse who comes to my house three times a week to change the bandage and check the wound, and in order to receive that service I have to remain “homebound” – which has been explained to me as “a state in which leaving the home is very difficult or a major effort”. There’s the practical side of it – the nurse comes here three times a week, so I have to be here for those visits, and can’t make arrangements to get the same service somewhere else (which was the opposite of what I was told in the hospital, but whatever). As I didn’t know that the home nurse could be taken away if I am no longer considered “homebound”, I mentioned to her an upcoming weekend trip, and that’s when I learned that I can’t even discuss with her leaving the house on a regular basis for anything other than a family emergency or somesuch. So I’ve just been having a few “family emergencies” lately.

It is a hard thing for me to accept, this idea that I’ve been classified “housebound”. I mean, I am deeply grateful that the nurse comes here, rather than me having to make arrangements to be driven to the local wound care center three times a week. Right now, my only means of transportation during the “work day” is a woman I pay an hourly wage to drive me places, supported by a few incredibly awesome friends who drive long distances to take me to appointments when my driver cannot. I flat out could not afford to pay to go to the wound care center three times a week; they have a van they could pick me up in, but then I’d have to use either my walker or cane to get around as there would be no one to push my wheelchair around, and the layout of the center would mean a great deal of walking. Walking has become more and more difficult for me, as my legs have been both swollen and very painful to touch, much less walk on. There are days I use my walker just to get around my house, which isn’t very big.

I also have been adapting to living in Hagerstown, which is in western Maryland, not close to either where most of my friends live, or a major urban center. It’s about an hour and forty minutes to Baltimore, and two hours to DC. I don’t have any friends who live close enough or who have open enough schedules to get together to do anything fun; there’s not a whole lot going on in the general area that could be done between the time Rave gets home from work and we go to bed without a significant amount of driving. We really feel like the “…at the End of the Universe” part of our house’s name has turned out to be more true than even we originally thought. We can’t jaunt out to a Tuesday night BR class or a Frederick munch without significant planning. There’s not a whole lot for non-drinking weirdoes to do in Hagerstown outside of going out to eat, which we can’t really afford.

This happens to intersect with a lot of other pondering I’ve been doing about the concept of “home”. The last few weeks, since I’ve been trapped at home a lot (save for a couple of weekend events), I’ve been spending my solitude doing a lot of mental processing about the divorce. It sounds ridiculous, but even though I suspected something was amiss in our relationship for months before the shit hit the fan, I was completely unprepared for the reality of our separation. Added to that, I really expected how he and I would deal with our separation completely differently. He continually swore that he wanted to remain “friends”, that he would uphold his oath to be my “family”, but other than terse emails about logistics (mostly money), he refuses to talk to me at all. I’ve offered to meet him face to face, talk to him on the phone, or even trade emails, but he doesn’t even say “no”, he just refuses to respond. Any time a conversation turns from logistics to anything personal, he cuts off correspondence completely and/or only responds to the parts of the messages he wants to. I find it so ironic, because I would never have guessed that it would be me reaching out and trying to start the reconciliation conversations; I am pretty honest with people that I am very, very rarely (if ever) friendly with my exes. This is not the first time that my partner tells me that they want to be friends with their exes, but then when things end they actively ignore me and pretend I don’t exist unless they absolutely have to deal with it.

I was very hesitant to get married a second time. My first marriage was pretty much a huge disaster, where I suffered emotional and mental abuse, and the relationship-I-call-spousal-even-though-we-never-got-married wasn’t much different, although to be transparent I feel that relationship was bad for both of us in hindsight. I also constantly struggled with my ability to trust my STBX, knowing he had a history of cheating on his partner and not much relationship experience under his belt. But what happened to change my mind had nothing to do with love or romance (especially since neither of us are particularly romantic people). I really had begun to feel that he and I had created a family unit; my love for him was as much familial as it was erotic.

I have a complicated relationship with my birth family. I love my mother and my sister very much, and I talk to them on a semi-regular basis. But that’s about all I have in my corner – I never really met anyone from my father’s extended family, so I don’t have any relationships there, and my maternal family…well, “black sheep” doesn’t even begin to explain how they treat me. I mean, they try to be friendly when we’re forced to be at a family event together, but none of them call me or know anything about my day to day life at all. And this lack is something I have keenly felt for a long time – I have a whole composition notebook I filled with angsty prose and poetry back when I was 24 or so, most of which was directly about my lack of “home”.

One of the terrible things I had taken away from me when I went through my shamanic transition was that the town I grew up in, the only place that really had any nostalgic magic for me, I lost that connection with it. I used to go there from time to time and go to places I used to hang out at when I was a kid, and I would get a sense of deep love and belonging from the place. I could “fill my cup” of having a place that fed my need to have a place I knew intimately, a place where I could find my way around without a GPS or a map or Yelp or anything like that. Where I could speak to the land spirits without much difficulty, on a regular basis, and knew what kinds of offerings they liked and where to leave them. When I left NY for MD, it was like someone went back to my hometown and turned all the spirits away from me; I describe it as “tasting like ash”. It feels like it belongs to someone else, someone I used to know, but isn’t accessible anymore.

When I married Mike, we were also making a commitment to live in Maryland for at least 10 years. We had discussed it at length, considered buying a house and creating roots. Before then, we weren’t sure if we would go back to NY (since we were both natives there) or maybe hang out in MD for a few years, or what. No, we made the considered decision to created family-of-choice ties with our friends and lovers in Maryland. That’s why our wedding was less focused on us declaring love for each other, and much more focused on the concept of “creating a family”. For me, this was so incredibly important and emotionally satisfying, because it gave me something I had been looking for; a sense of “family”, and a sense of “home”.

This year, due to a lot of little and big reasons, I decided that I would start looking for new-to-me events to teach at, and maybe take a break from some events I have attended for many years. So far, it’s been pretty good; but tonight I’m dealing with an unexpected consequence of that decision. Due to the “housebound” stuff, as well as some other medical stuff going on, I am home on this night for the first time in at least seven years. This week is Free Spirit Gathering, a Pagan camping event in Northern Maryland that I have attended since 2003. This is one of those events that I don’t even contemplate when I make a year’s calendar; I just know I’m going to be there. The last few years, I’ve been the department head of their mobility and roving security department, as well as teaching a few classes. It was the first big event I attended after moving to Maryland. I know probably more than 50 people who attend the event, and most of them I consider to be friends, if not family-of-choice. I stay in the same cabin with my Leather family every year, and we all know which beds are for which people. It’s not even discussed or thought about, it just happens.

Over the past month, it became clearer and clearer that I couldn’t go, at least not for the week. I tried very, very hard to change that, because this depressive funk I’ve been stuck in would definitely benefit from being around my family of choice, being in a place/time that feels homey to me. I love the campground where this event takes place, and feel connected to it as many others do. And there is an energy that awakens the land during this particular event that I do not feel when I am there with other groups.

At the same time, many of the things that make the event feel homey were starting to fall apart. My partner Winter decided not to attend; this was the one event we attend together where we spend a lot of time just hanging around each other (rather than running from one thing to another). I understand why he decided not to go, but then we got into a very strange place in our relationship where we stopped talking. I’ve reached out to him and told him I would really like to talk, and, like the STBX, I just get silence. I decided that must mean he needs time to deal with this strangeness, so even though today is his birthday, I decided not to call even though I very, very much wanted to. I feel the lack of our connection deeply; not just the lack of communication, but like I do not matter to the Clan we both belong to – another family I have tried to make my own. I feel like decisions are made without even thinking to let me know, much less asking for my input. I don’t understand where I stand in the structure, so I have decided not to push the issue and just let things happen as they do. But I can’t say I’m happy about it.

My Bear Family, another family-of-choice I love dearly, has also declared that this year is the last that they’ll attend FSG. I completely understand this decision, as the FSG community has been very negative (and at times, downright nasty) to some of us, and it’s just best that we leave places where it’s clear we’re not wanted. However, there isn’t another event that we all attend en masse. In fact, we haven’t all been in the same place since the STBX left us. I don’t know what the future of our family will hold, as we used to have a clearer vision as to who we were and what we wanted to do, but we don’t spend enough social time together to talk about it or actually make anything happen. I’m hoping that maybe, if we mutually decide to skip FSG, that maybe we can all decide to go somewhere (an event or not) together once a year, if not more often, just so we can all hang out together.

So maybe you’re beginning to see why I feel so…divorced…from feeling like I’m at “home”. The place I live in is nice, I love this little house, but it feels so much like a “landing pad”. I don’t want to put down roots here, because I don’t like living so far away from any of my close friends or any semblance of a social life. I’ve been openly thinking about moving to Massachusetts, but I don’t know how I’m going to afford that, or deal with many of the issues that I’d have to settle before I could do that. I’d have to find a completely new medical support system. Granted, I do have a group of friends who live within a two hour radius of each other, so at the very least I wouldn’t feel quite so solitary in the sticks.

I remind myself that this is supposed to be a year of contemplation, and living in a place that feels temporary does contribute to that, as well as being forced to stay home more often. I’m just having a terrible time keeping “contemplation” from becoming “rumination”, where I start to think about all the things that have gone wrong in my life in the past two years and how I ended up where I am now. A lot of my current situation was not by choice at all – I did not choose to move to Hagerstown, it just sorta happened. I did not choose for my STBX to completely cut me out of my life. I did not choose to develop new illnesses that make leaving the house even more difficult than it was before. I did not choose to have my financial situation tank quite this badly. I don’t want to sound like I was just standing there while all these things happened to me, as though I had no control at all; I know that’s not true, but that’s another contemplation/rumination issue again.

So here’s the question, then: Am I meant to have a family? Or is this something I am too much of a monster/non-human to ever achieve? Is anywhere ever going to be “home”? Am I ever going to look at a mountain, a river, an open sky, a horizon and know that this particular place sings to me like no other? Am I ever going to collapse into a bed and really feel 100% comfortable to be myself in that space? What do I need to do to make these things happen? Is it worth it, if I think I don’t have much time left?

I have this (pretty standard) desire to die “at home”. I absolutely do not want to die in a hospital. I want to be somewhere I feel totally comfortable, where I feel loved by both the people and the vaettir of the place, where I can release my attachments in the safe knowledge that the love I feel will go with me to the other side. And what I’ve realized this past month, is that I don’t know where this place is, or who will eventually end up being in that circle. It’s tempting to look at the people I hold close right now and know they’ll be there, but if you asked me eight months ago, I would have given you a much, much different answer than I would today. Nothing is permanent, everything is possible. I’m starting to wonder if I should just embrace the idea of dying alone, so I don’t have to worry about all the drama and heartache that goes into finding these things. I’m so tired of it. I’ve put so much work into making so many families, only to have to leave them in ruins, or be asked to leave as they outgrow me, or find out they never took it as seriously as I did, or whatever. Maybe this is why when I reach out to my ancestral line, I get crickets. I belong to no family, I have no line, I have no home.

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Am I Lying?

May 8, 2013 at 7:14 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , , , , , )

It’s been a difficult time. This past trip to Johns Hopkins has left me running on very low energy. There’s been a lot of sleeping, a lot of powering down, a lot of what I call “spoon banking”, times where I purposefully go into low energy mode because I have a lot of high energy commitments coming up, and I want to feel as good as I can when they happen. I’m looking at one of them this weekend, going to an event I’m kinda nervous about for a lot of reasons.

It’s been hard. The wound VAC experience hasn’t been as wonderful as no one told me it would. Basically, to be a little graphic, three times a week a nurse comes to my house to rip out foam that’s been stuck inside my wound, under negative pressure, which has partially adhesed to the wound. It hurts, each and every time, and it was only my mentioning that they used lidocaine when I was in the hospital that the nurse even thought of it.

I’ve started many blog posts, both for here and my other blog, but none of them have grown into anything worth posting. I usually only have a few paragraphs in me before I start to fade, or when all the drugs I’m on kick in and I get all fuzzy and it becomes very hard to focus. I know that people are interested in what’s been going on, have been waiting to hear how I’m feeling and how I’m recovering, but I don’t know how to make a meaningful post out of ‘Ow, sleepy, more ow, more sleepy.”

But even when I’m not actively blogging on a regular basis, I still do check in with WordPress. I read some of the other blogs I subscribe to. If I feel like I need a kick in the pants, sometimes I took at my stats. Mostly I just look at the numbers as they slowly decrease – and that makes sense, as less people read my blog when I’m not writing anything – but I also enjoy reading the search terms, the phrases that people put into search engines that lead them to my blog. Most of the time I find them either educational (I may actually write more about my experiences about both panniculectomies and hernia repairs, as many people come here looking for information about them), or humorous. My most favorite of all time is “If I eat a crow, will I get sick?”, which I assume lead the person to my post about going gluten free.

This week, however, I had a search term that made me ponder. I read it, and it made me think. It said, very simply, “Is Del Tashlin lying?” (I added the capitalization to my name.)

I am not as surprised as you might think I am. I have detractors, and I’ve written about them before. I’ve always been the kind of person that people either really like or really hate; very few people meet me and think, “eh, whatever”. I never delude myself into thinking that there aren’t people out there who have had extremely bad experiences at my hands, or reading my words, or being a part of my life. I know I’ve hurt people, I’ve alienated them, I’ve done or said something that made them think I’m a terrible person.

I honestly believe that’s true of just about anyone. In fact, sometimes it’s easier to find people who think a specific person is a terrible, awful human being, than it is to find someone to stand up for them and speak to their strengths.

When I first met the now STBX, I asked around about him. I didn’t know him very well, and we didn’t have any friends in common, so I was hoping to find someone I could trust who would calm my fears about dating someone so far outside of my social circle. And as the story goes, he had a few friends who I knew tangentially through others (gamer geek circles tend to overlap) who told me he was a stand-up fellow, and I decided to date him. He even admitted to me on our first real “date” that he had cheated on his first wife. I took that to mean that he was willing to be honest with me about both his strengths and his weaknesses, and that was attractive to me. I admire someone who is willing to offer up a full picture of who they are when you’re starting to get to know them. Usually, we’re too busy trying to put our best foot forward, to look as attractive as we can, in hopes of roping the suckers in. It meant a lot to me that he was so honest. It gave me hope.

And before we jump to the end of the story, there was definitely a middle. There was struggles and successes. I refuse to lock all of my good and uplifting memories of our relationship into a box and only focus on how things ended. I am doing everything within my power to continue to see him as I did in the beginning; someone who is neither all-bad or all-good, but a complicated person with as many successes as failures in his life.

In that vein, I’ve asked my lovers, family, and others close to me to keep their thoughts and feelings about the separation to themselves. I have asked them to be civil with him and his new family when they find themselves in social situations with them. Even though many of them are as hurt as I am, feel personally betrayed by the whole situation, because they bought into much of what they saw and felt about him as being not just a good partner for me, but a good person in general. But I think part of what makes that complicated, is that we all try hard to see our friends and family-of-choice as being generally good people. We try to downplay the parts of them that we don’t agree with, or aren’t as pretty or good or civil. How many times have you been in a relationship where you’ve done something to hide your partner’s lesser qualities? I think we’ve all been there, whether it was me explaining away the rampant anti-social behavior of my first husband, making excuses for the anti-semitism of another lover, the untreated alcoholism of yet someone else, etc. I don’t claim to be perfect, and I don’t date perfect people either.

In fact, when I fall in love with someone, I try as best I can to fall in love with their weaknesses, their imperfections, the things that most people would see as negative. I don’t go rooting around looking for them – I know they’ll show their face in good time – but when they become apparent, I open my heart even harder and tell myself that if I’m really in love with this person, I’m in love with all of them – even the parts that embarrass me, or that aren’t socially acceptable, or the parts they hate the most.

Sometimes this can be healing: I’ve loved many people’s bodies when the owner of that body couldn’t. I’ve loved people’s fight with their sexual orientation or gender identity. I’ve loved them as they made choices that would turn out to be bad for them, or bad for both of us. I strive to love beyond just the good parts, the hidden parts; to me, that’s the ground where real intimacy lies. When you can look into someone’s inner monsters and tell them they are loved.

How does any of this have to do with whether or not I’m a liar?

I used to be a really big liar. Growing up, lying was like breathing. I remember telling kids in the new school I found myself in, 4th grade, that I had a metal implant in my leg. Whenever I felt ignored or left out of something, I would go to one of them I had spun this tale to, and would say something like, “My ‘ML’ hurts!” and they would immediately leave whatever they were doing to spend time with me.

I find that story funny now, for somewhat obvious reasons. Now a days, I am terrified to talk about the depth and breadth of my disability, specifically for many of the reasons that I lied about it when I was 11. I don’t want people to be my friend out of pity. I don’t want people to stay away from me because my chronic illness makes being my friend/lover more difficult. I don’t want to shake the “I’m in the hospital” banner too often, lest it start to feel like a child crying “wolf”, and not being able to rally support when I really need it.

I also had to face a big challenge from Loki during my shamanic crisis. One of the things He demanded from me was that I never lie. I can bend the truth, I can embellish for storytelling purposes, I can avoid talking about something or omit details: some people see these things as equitable to outright lying. And maybe it is. But the promise I made was that I would never say something that was out-and-out untrue.

I am not perfect. When I am upset, especially when I am in an argument, I am apt to say whatever comes to mind in the moment, including things that are said merely to wound the person hearing them. Frequently, these things are untrue. In the moment, I find it extremely difficult to hold back from doing that; my passion takes over and my desire to hurt the person who is hurting me takes over. I hate it, it’s a part of me that I see as imperfect, a part of me I would hide from people if I could.

I sometimes know what I have to say in order to get a certain response. People who see me in the hospital sometimes comment that maybe the reason I run into problems with pain management is because I can look at a doctor and calmly tell them I’m in 9 out of 10 pain. I’m not crying, or rocking back and forth, or breaking down. I can be emotional about some things, but pain is no longer one of them. I deal with pain so often, almost always, that it is totally possible for me to truly be in excruciating pain and still have a calm demeanor. With these new bandage changes, I would be completely wrecked every other day if I let the pain take me to such an emotionally rendered place. I need to stay stoic so I can get up, go on living my life. If I let all the pain I feel all the time control my emotional state, I would very likely never get anything done ever, and would spend every single day in bed falling apart.

That’s part of what has made the last two weeks especially difficult for me. I’m not far from that. The bandage changes are Monday/Wednesday/Friday, first thing in the morning, and I find that at least for now, those days are basically “survival” days. I’m happy if I do more than just watch streaming video and use the bathroom those days – feeding myself is a victory. This weekend will be a test, to see if I can heal enough from Friday’s change that by Saturday, I can have a little fun and teach some classes. I’m totally up for the challenge, and I have to be: sometimes wound VAC treatments can last more than three or four months, and I have a very deep, very big wound. On the brighter side, I am showing some small signs of healing already, but it’s not going to be a short journey. I will be working in and through this for a long time, and I know that I am going to have to start making those days more productive if I’m going to get through this mentally.

I understand that I could choose to take more time off, to decide that this isn’t going to get any better and just close myself down until the wound is better. The problem is? I just did that, from August to February. I don’t want to do that anymore. I have a strong emotional and mental need to get out of the house, to get back to a semblance of a normal life, or as much of one as I can handle. I know I can’t be a superhero all the time, and that I will have to make choices all along the way to remind myself that I’m still not “well”, whatever that means these days. But I refuse to just sit in my house and feel sorry for myself and my pain for a year or longer. Seven months was enough.

I also accept that this is the new normal. I know a lot of people use the idea that “someday things will get better” as a way to keep their spirits up and hope alive. I have learned, through the last year’s experiences, that saying that to myself is lying. I struggled in my marriage to remind my spouse that there was no magical day coming when I would no longer have chronic pain/illness/disability, that there was no magic doctor out there waiting to give me a magic diagnosis that was going to fix everything. To me, where I am in the process, that sounds about as realistic as winning the lottery and marrying royalty and living in luxury for the rest of my life. I know that’s not my road, I know it in my bones, and I refuse to let anyone around me live in that illusion, so I have to start with myself.

I have to accept each moment as it is, not as I hope it could be, or how it might be someday. I have to accept that even if the wound VAC does what it’s supposed to and keep me from getting any more abscesses, it doesn’t mean that I won’t still have chronic pain, worsening diabetes, diminishing mobility, etc.

When I was in the hospital this last time, someone I’ve been kinda sorta flirting with came to see me. That was a big deal to me, because I still struggle with being completely open with potential lovers about the reality of my health situation. My STBX really made me gunshy about that; I don’t want to feel like I’ve sold someone a bad bill of goods by convincing them I am more healthy/painfree than I reall am, but at the same time, I don’t want them to think that every single day of being in a relationship with me will be about doctors and hospitals  and medical devices. It was hard for me to have my crush there, but it was also important. I needed to know that they understood that this is an integral part of my reality now; that for me, being in the hospital is a somewhat “normal” event, rather than the earmark of an emergency. I needed them to see what it’s like to wait for days as doctors try to figure out what they’re going to do, which is very unlike the image we get from television that doctors are obsessed with just your case and is putting all of their resources towards you until they have an answer. There’s a lot of hurry up and wait in the world of dating someone with a chronic illness.

It’s hard, because in some ways it’s like leading the conversation with your inner monsters. You don’t get the option of hiding it, or waiting until something happens to reveal what makes you less than perfect. From the moment you spend more than a few minutes with me, my imperfection is brutally honest with you. It’s there, in a way I can’t lie about.

Am I lying? Man, I wish I were. I wish I had the luxury of making all this shit up, when in actuality I’m in great health and having a wonderful time day to day. I wish my life was full of all the things I wish I could have, the things I expected I would be doing at this age. I wish I could go out tonight to a bar, have a few drinks, hang out with my friends, and go dancing. I wish I could create a world where this wasn’t my day to day existence, believe me.

But I will always have detractors. I will always have people, for whatever reason, who feel the need to either highlight the honest imperfections I have (which I don’t mind so much), or make up shit to make me look bad (I mind a bit more). But in the end, the only weapon I have to win something like that is to keep on keepin’ on, living my life as honestly as I can, and prove them wrong by just being as open and honest as I can.

So in case you Googled “Is Del Tashlin lying?”, the answer is yes. Every day, Del Tashlin is downplaying how much pain he is in. He is pretending to be totally okay with all of his chronic health problems, and that his disability never depresses him or makes him angry. He lies to himself, all the time. But to you? That’s up to you to decide. Google won’t know the answer.

 

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Surgery Tomorrow

April 23, 2013 at 11:06 am (Death and Dying, Hospitalizations, Living, Medical, Spiritual, The Panniculectomy) (, , , , , , , , , , , , , , , , , , , , , )

12 days after being admitted through the ER and the decision has finally been made: I am having surgery tomorrow.

In a way I guess it’s a good thing we waited, as I have a very clear understanding that we have tried every other option before jumping to surgery, and in fact the lead team on my case, Plastics, has been dragging their feet for several days after the other teams (Infectious Disease, General Surgery, Acute Pain Management, etc) all decided that surgery was the best option left.

Yesterday was the final straw. As I’ve written before, they have put several drains into my abscess in hopes it would deflate on its own, and for the 11 days I’ve been here we haven’t seen any fluid come out at all. Interventional Radiology, the team that deals with the drains directly, informed my surgeon that the fluid inside of my collection(s)  was too thick to drain this way, but my surgeon was stubborn and wanted to try one last time before he gave up for good. They poked a new, wider hole into the collection and then even went so far as to attach it to suction, and still nothing came out.

The surgery is not exactly the same as the one in December in a couple of ways. The December surgery did entail removing an infected abscess but there was a lot more infected tissue that wasn’t incorporated into a collection, enough to require a panniculectomy. When they finished the surgery, they removed some excess skin and pulled my belly up, making it much smaller (technically, a “tummy tuck”), and I had a very large surgical scar that went from one hip to the other. I also had two small grenade-shaped drains (JP drains) that helped suck out excess fluid produced from the surgery.

This time, they will be removing an infected abscess, but the focus is on trying to keep this from happening over and over again. They’re going to re-open a small portion of the scar from December (about a third, or 9-15cm) over the collection, remove the abscess and all the other bad stuff around there, including physically washing the space out. Then, instead of sewing or suturing up the wound (which will be “the size and shape of a small loaf of bread”) like you’d expect, they’re going to “pack” the hole with a special kind of vacuum-bandage. The idea is that if they just sew the hole closed, the hole will sit there empty, and nature abhors an empty space. By packing the wound, it is forced to heal from the inside out, and the scar tissue created will keep it from reforming a new and/or different abscess in the future. By using the motorized system, any fluid that is created from the wound or left behind by the surgeons during the operation will be sucked out in a more efficient method than the drains we used last time. (I have a bad history of having drains “fall out” before they’re done doing their job, no matter how many precautions are used to keep that from happening, and that could very well be contributing to the problem.)

I will likely be in JH for another week or so in recovery, and then sent home with a home-care-nurse visiting three times a week. They’re telling me I should be able to work (including teach classes and stuff), so I haven’t cancelled any of my upcoming gigs. I will have at least one, maybe two, small motors I will have to port around with me, but I’m inventive and will figure out some fashionable way to do it and not look bad.

I haven’t had much more time to ruminate on the spiritual meaning of all of this beyond what I’ve already posted. I’m trying very hard to see this situation as not being all about me, but at the same time not allowing others to use me/my medical situation against me in some way. It’s been difficult, especially lately, but I just keep holding my head high and be the man I want to be and let everything fall as it will.

I asked Alex if he could think of some witty vacuum joke or reference I could turn into the title of this entry, but joking about it would inaccurately convey my emotional state. I’m not depressed or amused; I’m pissed. I’m angry that it took 12 days for the doctors to do what they told me was going to happen 12 days ago. I’m angry that last time I was given all this lead time to prepare, and this time we have practically none. I had a very clear image as to what it all meant, why it was happening both physically and spiritually, and what I was supposed to get out of it. I understood it.

This time I have no idea. I have some guesses as to what it means, but they’re really just shots in the dark – and I’m also willing to accept that maybe it just doesn’t have a bigger meaning to it at all. I understood that the abscesses were something that happened because Dr WLS fucked up my ventral hernia repair that April, but this one doesn’t seem to be directly related to that, either. Last time I was able to garner support not just because of the health crisis, but because it coincided with my husband ending our marriage. Instead, this time, it all just feels like it’s landed on my lap and I have no idea why, or what I’m supposed to learn, or why this would have any meaning at all, other than to make me miserable and in pain and reinforce my fears that I can’t live a normal life ever again.

It reinforces a lot of the fears I was able to squelch last time, stuff about my divorce and my living situation and trying to figure out who really cares about me and who doesn’t. It makes me look really hard at the prediction I received three years ago, that said in year three the game would change dramatically. As my STBX basically disallowed me to talk about the prediction at all, I learned how to put it out of my mind, but these days it is feeling more and more relevant and yet harder to accept as being real. It’s dredging up a lot of inner stuff I was able to bury and/or hide for a long time and making it impossible to ignore. It’s forcing me to really and truly think about the word family, what it means, what the qualifications are, and what to do when someone who used to be an important member of your family makes it clear that they don’t feel the same way anymore. I am thinking about what honesty is, and where honesty is important, and yet where honesty can be hurtful and/or cruel at the same time. I’m thinking about a lot of things.

But at least now you all know that the surgery is for real, it’s happening tomorrow at some point, and you’ll all know one or another that I got out of it safely (or not). I will be spending some time this afternoon updating my will and advanced directives to make sure they reflect my most current realities.

Please feel free to pray for me, to ask your Gods (and mine as well) to look out for me, to guide me through this process, and to bless the doctors with clear heads and deft hands. Please do not send energy or Reiki of any kind; although I do have an anti-Reiki amulet to wear, it just makes things easier if you don’t send it for starters.

Love you all, and see you on the other side.

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Opening Up Yet Again

April 20, 2013 at 4:48 pm (Death and Dying, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , )

I am having another surgery. We’re not sure exactly when, but it will be before the week is out; my best guess right now is either Tuesday or Wednesday. The surgery will be very similar,  but not identical, to the surgery I had in December: they need to open my abdomen, remove an infected abscess that has now grown to the size of “a large grapefruit”. The various departments that have been working with me since I got admitted last Thursday have being doing all they can to try to avoid this surgery for many reasons.

Firstly, every abdominal surgery I have, weakens the abdominal wall and makes me even more prone to hernias and other serious re-occuring medical problems. As these abscesses are happening as a reaction to other abdominal surgeries, in a fucked up way removing this abscess may cause more to form in the long run. These surgeries are stop-gap measures so as to avoid a much bigger, more invasive surgery; one in which they would have to remove a portion of my bowels. My plastics surgeon, Dr. Sacks, is still hoping that pumping me full of high dose antibiotic via the PICC line will soften the abscess and help it break down on its own, but he’s the only doctor still hanging on to that hope.

This surgery will be different because I won’t be having a panniculectomy this time. Instead, they’re going to cut a smaller incision, but a larger hole. (Dr. Awesome described it as being about the size of a loaf of Wonder bread.) They will remove the abscess and any infected tissue that surrounds it, but they won’t close the wound when they’re finished. If they did that, they’d be leaving a perfect place for a new abscess to form. Think of it this way: instead of just evicting the tenants, we’re burning the house down.

So what’s going to happen is they will leave the wound open, but pack the empty space with a special kind of bandage that will help keep fluid from building up. I will likely have to carry around some sort of knapsack or fanny pack that has the motors in it, but I will be able to leave the house and go do stuff as soon as I feel able. This being said, I’m currently not planning on canceling any of my upcoming gigs except for the BR class (since I’ll likely be having surgery that day.)

Here’s a cute little tidbit: Either because I mention it in passing, or something triggers it, my doctors are finding out that I have nicknames for them. They mostly know about Dr. Awesome. The resident that I see weekday mornings complained, so he’s Dr. Fabulous. When I saw the guy who is working this weekend for Dr. Sacks’ service, I flat out asked him what he wanted to be called, and he decided on the Grey’s Anatomy moniker Dr.McSteamy – but I dunno, he looks more like Patrick Dempsy than Eric Dane.

This is McDreamy, Patrick Dempsey And this is McSteamy, Eric Dane.

I’ve been doing some serious thinking about this whole thing from a spiritual perspective, as well. I’ve talked it over with my pastoral care counselor, my Clan’s shaman, and other important spiritual folk in my life. At first, I was really angry at Hel, but I’ve come to peace with that now.

The first thing I have come to sit with, and to dwell within, is the shattered illusion that just because I made it through December’s ordeal doesn’t mean that I am never going to be sick, or in the hospital, or need months of bed rest. I had somehow convinced myself that if I just healed from that surgery, everything else was going to be smooth sailing from there on out. The arrival of the madness quilt, as well as the writing I’ve been doing for the book, let me sink into this soft comfort zone of not having to deal with all this death and dying stuff.

I had forgotten that way before I accepted this deal with Hel, I had agreed to be the Dying Man for Baphomet. Part of that Job is to explore the spirituality of dying and of death, so as to bring peace to others. In an odd way, the December ordeal was a formalized first step in that process, a “put up or shut up” moment if you will. I had talked about being the Dying Man, but honestly I hadn’t really thought about the nitty gritty of the death processes. Once I knew I had to face the surgery in December as some fashion of death, especially not knowing if that fashion was going to be literal/physical, I started doing a great deal of reading and research about the physical act of dying. I looked at pictures of dead bodies for the first time, real dead bodies and not just live models made up to look dead. I watched documentaries about how we treat our dead, the funereal processes and ancestor veneration. I read a ton of Near Death Experiences, and attempted to have my own through meditation (and meditation alone, I promise you.) Even after I woke up on the other side of the ordeal, I wrote a lot in my private journal about how the death process feels and what it’s like to be newly dead.

All of this, though, lived inside my own head. I still haven’t said very much about what happened to me, or what it meant, or how it changed the way I saw my own life and the lives of those closest to me. I’m not sold that it’s meant for public consumption, and by no means am I trying to say that I will continue to get abscesses until I poop out some incredibly spiritual insight on the means and manner of death and dying.

I do feel, though, that it’s important for me and for those who allow me space inside their head (by reading this blog or being my friend or anything in between) to cherish their lives. Each and every spoonful of energy is important, and what you do with it matters. This doesn’t mean you should never rest, running around trying to make every moment the best possible moment to the detriment of your soul and body; but it does mean that you can celebrate the fact you’re alive as often as you need to. You don’t need – nor should you really want – constant reminders that this life could end at any moment and therefore you should launch into everything that scares you or gives you pause. But even in the scant few months I’ve been back among the living, I have already fallen into the old pattern of allowing circumstances to overwhelm me. I spent more time feeling stressed and emotionally wrought because the effect of making choices that put my desires and needs before those of others keeps holding me back. I even got a message from a God telling me that if all those pulling me in a thousand directions didn’t stop, Hel would revoke Her permissions around having human relationships.

I let it get that bad, and it got that bad fast. It wasn’t anyone’s fault but mine, and I own that. The reason this abscess got as advanced as it did is because I put off going to the doctor. I saw the swelling and had a strong guess as to what it meant, but I was so intent and focused on the idea that I was moving on from all of that medical stuff and focusing on my Work I ignored it for far too long. And what really sucks is that I didn’t even accomplish what I really wanted to do with my time instead of seeking medical care; I spent the majority of it feeding the needs of others. This surgery is, in my own mind if not in reality, a direct consequence of not putting my own needs in front of the needs of others. Of not creating and enforcing my own boundaries around my time and energy. I like to think that it’s also the reaction from other people not respecting my feeble attempts at boundaries, but blaming others isn’t going to get me anywhere, and it’s not them that are going to be walking around with a giant vacu-wound on their bellies for a month.

As your friendly neighborhood Dying Man, I will share with you that the hard lesson I’m still working on. I have a life – my own life – and it is absolutely necessary for survival that a good portion of that life belong to me and me alone. This sounds very elementary, but for those of us that spend so much time helping and serving others it can be the hardest lesson to learn. It’s very easy to put your own needs aside, to internally compare the needs of someone else to your own and always decide that the other is more important.  Even more personally, I need to remember that my soul needs the body to express itself, and because taking care of my body is so much more boring than taking care of the soul.

Another big issue is that it’s hard to start building relationship and life skills when you’re surrounded by those who expect you to have a doctorate degree. It’s a two way street in some ways – I can muster all my strength to build and maintain boundaries, but because I’m still learning what it takes to make them it’s too easy for others to steamroll over them without a thought (or better yet, stand around and say, “Aww, look, Del made a teeny weeny boun-da-wee. How adorable!”).

In order for me to survive and thrive in the life Hel has granted me, using the skills Loki imbued in me, reacting to the hot pokers Baphomet has fucked me with, I need to take more time for myself at all costs. I need to stop wasting time worrying about things that don’t directly relate to the work (and Work) in front of me. This also means that when other people try to lead me down paths unrelated, I need to be more brutal and straightforward about distraction and what distractions support and uplift me and which ones make me depressed and unmotivated.

I will write more about the impending surgery once Dr. Sacks actually decides it’s going to happen. For now, prayer for discernment and clarity of communication would be the most helpful – and NO REIKI PLEASE.

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The Three Sided Coin

April 16, 2013 at 7:21 am (Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you just want the short version, you can skim/scroll down to the “Here is the TL:DR Bookmark”, and start there. You’re welcome.

As you all know, I had a panniculectomy in late December, from which I healed much faster than expected. The surgeon had predicted a much more dire situation, but in the end other than a little breathing issues on the table everything seemed to be going fine. By February, the surgeon was ready to start scheduling my follow-up appointments six weeks apart; we had agreed before the surgery that we would be following up for at least a year if not longer, because there was a really high chance of post-op complications. Six weeks was the maximum time between follow up appointments, so that’s how well I was doing only two months after the knife.

In the middle of March, I noticed that there was some very slight swelling around the right-of-center part of my abdomen, around part of the surgical scar. The doctor has warned me that there might be odd swelling up to a year afterward, so at first I dismissed it. Also, I had just spend two and a half months “healing from surgery”, so I wasn’t keen to go running back to the doctor right away; I wanted to spend that time and energy getting back into the swing of things post-separation, booking some gigs and finishing the book. Every week I’d say to myself or Rave, “I should call Dr Sacks about this swelling in my belly; it looks a little worse.” And then I’d get distracted doing other stuff and wouldn’t. I kept assuring myself I had the six-week checkup already planned and if nothing else, I’d be seeing him then.

Six weeks finally passed, and I went to see him for the appointment. As soon as he walked in the room, my guilt jumped out at him and said, “Don’t be mad at me; there’s been some swelling. I kept thinking I should call you, but I was busy with other stuff and was afraid I’d have to go on hiatus again to deal with it.” He laughed; he reminded me that this is my body, not his, and if I want to ignore something I had the right to do so. He’d eat those words a few weeks later.

This is an interesting thought, and something worth going on a bit of a tangent on, if you’ll indulge me. (Again, if you want to skip ahead to the part where I get to the point, feel free.) Between having friends who deeply care and sometimes feel invested in my well-being, and being a blogger who shares their medical journey with the general Internet public, it can sometimes be overlooked that we’re talking about my body, and that everyone has made decisions that did not put their body or their health at the top of the priority list. Whether it’s extreme sports or eating a triple bacon cheeseburger with hamburger patties for buns, we accept that sometimes the experience is worth the risk. But when one is both public and chronically ill, people tend to want to bundle us in soft cotton and keep us from any extra suffering. It’s actually something I’ve read quite a bit about when reading disability advocacy and activism papers; that part of fighting for body autonomy is fighting for the right to do unhealthy or risky things with one’s body regardless of one’s state of health/ability when they make that decision.

In writing this blog for over a year, I frequently get emails, comments, or find myself in conversations, in which people basically inform me that they know more about how to treat my body than I do. That’s not what they say, but it’s what they mean. When someone sees me eating something delicious, but not the most healthy (or these days, merely something I’ve previously stated is a food or drink I am avoiding) they feel they not only have automatic permission to point this out to me, but in some cases, they physically take the food away or publicly shame me for making that choice.

During this hospital stay, people have been bringing me slushies from Sonic, which is a total Del comfort food. They’re basically fruit, simple syrup, and frozen water (and I get the ones that Sonic claims are made from “real fruit”, rather than just a flavored syrup), but it doesn’t take a food scientist to know that they’re full of simple sugars. My blood sugar numbers have been pretty shitty lately, and most of that is due to stress/pain. However, I’ve noticed a behavior among the nurses here that I really wish the rest of the world would take a cue from: they don’t care. When I get “caught” – when a nurse comes in to take my blood sugar only to see a half-empty Sonic slushy on my table next to my laptop – the nurse doesn’t actually say or do anything at all. It’s me, responding to years of programmed fat-and-sugar-shaming, that immediately jumps and says, “You caught me. I was having a slushy.” And it is Pavlovian, this response, because my experience from the last few days has shown me that the nurses don’t give a damn. It’s the people visiting me who make the judgement statements or even just a joke about how terrible it is that I’m drinking this thing.

It’s as if disabled/chronically ill bodies no longer belong to the person using them. We are community property, open to scrutiny and judgement by anybody, but most often by people who think they know better. However, I will assert that when a person feels entitled to judge another based solely on what they see/hear/know in the moment, or solely on what that person shares on the Internet, frequently their judgements say more about them than they do about us. Someone may attempt to shame me for my choices, as some sort of dodge or deflection about their unhealthy choices.

There’s more I want to say about this, but this tangent is getting really long and you’re more interested in what’s going to happen next in my hospital story, so remind me to come back to this sometime.

He didn’t think the swelling was anything particularly surprising or negative, but he sent me to get a CT scan right away to see if it was a new fluid collection or abscess. It turned out I had a much smaller (9mm) fluid collection, but that it was not infected. I got another drain installed via Interventional Radiology (IR), but there was (oddly) very little fluid coming out. What did come out was serrous fluid, or basically white blood cells. I only had the drain in for a week and a bit, as it mysteriously fell out of it’s own accord on that Sunday when I was at Charm City Fetish Fair.

The day before that happened, Saturday April 6th, was a very bad day. Even though I knew I needed to be up very early (for Dels) in order to go to Charm City and register, I could not for the life of me get any sleep the night before, mostly because I felt pain and nausea. It was bad, really bad. Probably the worst chronic illness day I’ve had in the last two years. We got to the hotel and I went right to sleep, woke up, did my class/panel, went right back to sleep, woke up for my volunteer shift, and then sleep. I couldn’t really eat or even drink fluids because I was so sick to my stomach. I emailed my surgeon and his PA to tell them how bad I was feeling and asking for their advice. Dr Sacks felt it was no big deal and to be expected, whereas his assistant thought going to the ER there and then was the better choice. As I was not feeling inclined to go to the hospital, and Dr. Sacks was assuring me it didn’t have anything to do with my abdomen, I decided to stay at the event.

As part of my earlier tangent, I wanted to add another point here. Again, feel free to skip this part.

Another way in which people outside of my immediate circle judge me and my choices is when they criticize me for leaving the house. I have lost count of how many times someone has suggested that if I only stayed home more often, or rested more, or did less work, or some other way confined my life to my bedroom, I would miraculously feel better and/or have taken better care of my body. They also feel entitled to make those comments because I openly write about financial struggles and have received donations from people in the past to help cover medical costs; and yet, I also write about going to parties or events or in some other way spending money on a social life that, in their opinion, would be better spent on medical costs.

I can’t stress enough how backwards this is. If I never go out and never do fun things, then my entire life becomes restricted to “being sick”. The only people I know – and I do know them – who want their lives to completely revolve around being ill/having medical emergencies, are mentally unstable. They thrive off of the attention people who suffer are given, and they are immediately jealous if someone else gets one iota of attention because that other person is also suffering. It’s as if there is nothing redeeming about them, nothing worth paying attention to or engaging with them over, except their illness.

I, and I like to think saner people, fight that perception with every bone in our body. I begged Baphomet to allow me a second blog specifically because my online presence had become completely focused on me being sick, and it’s not the only, or even most important part of my identity. But in order to do that, writing about my adventures is not enough; I actually have to go have them. Now, this doesn’t mean that I spend the grocery money (or the prescription money) on sex toys and roller coasters, but it does mean that – gasp – I choose to cut back on one thing in order to have fun, and also that – gasp – I frequently go out and do fun things when I “should” be home resting. Anyone who tries to shame me for leaving my house twice this month, putting off seeing the doc by a week or two, doesn’t understand or support the concept of people living full, complete, joyous lives. And that’s just sad, because it means that their life is so boring, so empty, that their idea of fun is to criticize and ridicule some random person on the Internet for doing something fun.

Sunday morning came, and our plan was to get dressed, eat some breakfast, take a look at the vendor mart, and go home. A friend of mine was in charge of vendors and was telling me that no one was buying stuff and the vendors were feeling kinda desperate. As I was getting dressed, I turned at one point and realized my drain was on the bed, and it was too far away from me to still be attached. Sure enough, upon closer inspection, I could clearly see the end of the tube that goes inside of the abscess lying on the bed like it was just another piece of my outfit. I emailed Dr Sacks and his PA again, and this time they both stressed that I should only go to the ER if I felt I had to, because there was really nothing the ER could do to assist me. I bandaged up the wound and left the hotel for home, spending most of the next two days asleep.

I was looking something up online about Isoniazid, my TB drug, when I remembered about liver-toxicity, which is a well known and documented side effect that hits those who get ill a lot. I brought up a page on the med and lo and behold, there’s a list of all of my current symptoms under the heading, “Seek out medical attention immediately if you experience…”

I had been waffling about calling a new PCP or going to see the old one. My PCP is no spring chicken, but at least I’ve been with him for long enough that I feel like he knows what’s going on and how to look at the bigger picture. However, I couldn’t get in to see him specifically, but another doctor in his practice. My ride shows up to take me to the appointment, and even she suggests we skip it and go directly to the ER instead. At this point, however, I’ve created this narrative in my head that says “If you go to the ER, it will be an emergency. If you go to the doctor, it will be no big deal.” I even reaffirm my decision when we reach the point in the journey where we could still peel off and go straight to the ER.

Well, we know how that played out. The PCP listened to what I had to say, and immediately knew she was out of her depth and I should go to, not just the ER in general, but the ER at Johns Hopkins, since I’ve been working with them and my files are all integrated. So my patient driver and I hop back in the car and reverse our trip to JHER.

It is quickly realized that I do not have a liver problem, but whatever is ailing me is fucking serious. I get admitted fairly quickly, even though it takes hours upon hours to get a bed. I start to feel much more ill as they park me in a tiny waiting room (which they now swear is a “staging area”) for two hours with no supervision, no one checking in to see how I’m doing, and a gaggle of very angry sick people who have also be relegated to this purgatory. Finally, Rave and I make enough of a stink combined that they move me back into the ER proper but we have to continue waiting for a “real bed”.

We learn that the new fluid collection has grown larger. It now has a “skin”, a membrane that holds it all together, which makes it really difficult to kill with antibiotics alone. They take cultures and try to determine exactly what is in there and what way is best to treat it. I end up losing the fight over getting a PICC line or central line when they start running Vancomyacin through my veins, and I blow three or four veins that first night alone.

The next few days are kinda blurry for me. See, at the same time, I started suffering from very short bouts of amnesia. I would forget where I was, or what I was doing at Johns Hopkins (I kept thinking I was back in High School). I got a neuro consult and although they’re testing just to make sure I didn’t have a mini stroke or temporal lobe seizures or anything like that, they think it might be a side effect of long term use of narcotic pain meds. I don’t know if I agree, but I do admire them for at least making an effort to make sure it’s not something more serious. They chided me a bit for not chasing the neuro stuff more aggressively (like going to get all the test my neuro ordered or going to see him more often) and I explained that I have been putting out fires since August and am doing my best.

Anyway, now you know enough of the backstory to get to the point.


Here is the TL:DR Bookmark

The Infectious Disease Doctors, The Plastic Surgeons, and The General Surgeons all agree.
The reason I am getting these infected abscesses in my abdomen is because of the mesh that was used during my ventral hernia repair back in 2009. Yes, that was Dr. WLS’s doing.
They used mesh to hold up and strengthen my abdominal wall, and in the process the mesh grew a “biofilm”, basically, a wonderful fertilized area for bacterial infections to grow and flourish.

Option One: “The Big Deal”

I will continue to have these infections while I still have the mesh inside of me. Removing the mesh, however, would be a big deal surgery wise. The mesh is covered in adhesions, and may very well be attached to my intestines, and it was put there for a reason. So this surgery, which I’ve nicknamed The Big Deal, would be a team of surgeons going in, finding said mesh (it doesn’t image well on CT or Xray), carefully removing all the adhesions, removing it from my bowels (which could get complicated very quickly, and include such favorites as “Bowl Resection”).

The surgeons are giving me all the exact same doom and gloom songs that they did about the surgery in December; that I will definitely be in the hospital for close to a month if not longer, that there is a really good chance I won’t make it through the surgery (especially now that I had a hiccup in the Dec one), and it will be a very long and difficult recovery with lots of creative agony and embarrassment. But this time, none of the surgeons want to do this surgery. They all feel this is something we should wait, and plan, and know the area super well beforehand, for the reasons we all know and have discussed.

The only way The Big Deal would happen during this hospitalization is if I spiked an abnormally high fever (like 104), or in some other way showed signs of advanced infection.

Option Two: “History Repeating”

My second option, which is still very much on the table for this hospitalization, is to address this specific abscess. That would entail having much the same surgery that I did in December; it would be much more superficial than The Big Deal, in that it would not entail cutting into the muscle wall or anything like that. It is still as dangerous as it was last time, but we also know that I did very well with the surgery itself and healed fairly well.

Option Three: “No Cuts, Just Infinite Pills”

This is the option most of the doctors (but not all) are currently advocating for, depending on how the next few days go while I’m here. This course would be to put me on really strong “nuclear bomb” home antibiotics, either via a PICC line or oral meds, for six to twelve weeks. After that, I would be given a permanent prescription for whatever antibiotic they feel will fend off more infections in the abdomen. I would still have the mesh, and that would still be fertile soil for growing infections, but the antibiotic would hopefully keep the infections from becoming anything to write home about.

Before you get all excited that there’s a non-surgical option, there are some big drawbacks to both being on a nuclear bomb level antibiotic for six to twelve weeks, and there are some bigger drawbacks to being on a permanent antibiotic prescription. Now, I’m saying “permanent”, but that makes the assumption that we never decide to try to correct the problem surgically.

Now, this makes it sound like I have a decision to make, right? Not really. I need to be informed about each of the options, and have a general understanding of how I feel about them and how seriously I want to pursue them. But how things like this usually play out is that the doctors will look at all the test results and data and make the best decision based on their knowledge and experience, and then recommend that choice heavily to me. It doesn’t mean I couldn’t chose to advocate the fuck out of a different choice if I really wanted it (like in Dec, when Dr Sacks kept suggesting reasons why we’d postpone the surgery another six weeks), but I’m the type of guy who trusts but verifies.

If we lived in a world where I could make a free and conscious choice, I would probably choose History Repeating for the right now, and then spend the summer preparing for The Big Deal. I’ve already reached out to Dr. Awesome and asked her if she might be willing to look at my current records and give me a consult over what she thinks is the best choice; but I did this with the covert agenda of asking her to be my surgeon for the Big Deal. Dr. Sacks would handle History Repeating, but I know from past discussions that he would feel uncomfortable doing The Big Deal all by himself. He and Dr. Awesome have worked together in the OR before, so it’s possible to get them to team up for The Big Deal.

Right now, they’re still trying to get a very accurate understanding of what types of infection I have growing in my abdomen, and also digging up information about the mesh that was installed – when, what type, where, etc. If I had to take a wild guess as to how much longer I am going to be here, I’d say at the minimum three more days, at reasonable maximum (barring surgery) I’d say a week or a week plus a day or two. If History Repeats, I would bump that up to two to three weeks.

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Own Your Own Happiness

March 19, 2013 at 12:00 pm (Living, Mental Health) (, , , , , , , , , , , , , , , , , , , , , , , )

Your happiness relies on you. You rely on your happiness. It’s a reciprocal relationship, one where you feed into your happiness bank, and it pays you in dividends. When you are feeling less stressed, more relaxed, more focused, more satisfied with your life, it’s easier to achieve your goals, whatever they may be. If you don’t feed your happiness bank, your life becomes a constant struggle to find a moment of peace, and you get diverted from the things that you want to be doing, in an emergency-like feeling of desperately needing that release.

happiness piggy bank

The problems may start because the people in your life – your lovers, partners, friends, co-workers, clients, employees, etc – also somewhat rely on your happiness. When you’re not feeling sad or stressed, you’re easier to work with, more fun to be around, and more able to give and receive love without hesitation. So it’s in their best interest to try to make you happy, in whatever way they can intuit that. Because it’s hard to ask, and get an honest answer to, the question, “What would make you happier?” And even if you ask it, and get an honest answer, it may be hard to manifest exactly what that person needs.

We all want to nurture the people we care about. It’s an innate feeling, hard to fight. If they are physically harmed, we want to be there with band-aids and antibiotic cream. If they’re suffering from grief, we want to give them a shoulder to cry on and things to distract them. If they’re feeling unloved, we want to give them as much attention and affirmation as we can. And if we’re not careful, two very unhealthy and unfair things result from this.

The first is that we give so much that we aren’t feeding our own banks. Everyone has heard of burnout, but few people are savvy enough to recognize the beginning symptoms, so it gets discovered too late. We spend so much time feeding other people’s banks that we aren’t doing things that make us happy, or only make us happy as a side effect. Even if making other people happy feeds you in some way, if you aren’t getting anything in return – and it’s very hard for sad, depressed, angry, lonely, neglected-feeling people to give much, since they feel empty themselves – then you’re spending what little you have supporting others. This can work in short-term situations, like when your friend loses someone close to them, but in the long term it leads directly to burnout.

The other side of this, the more insidious and dangerous side, is that the other people comes to see you as their sole or primary provider of the happy. If they aren’t taught to find their own happiness, but instead are taught that complaining to others about their bad-feeling feelings results in getting time, attention, support, money, or whatever else makes them happy, they become mice in an experiment, pushing the “happy” button over and over again, addicted in a way, to whatever it is that others have done to make them feel better. They become resentful and angry when you can’t feed them as much as last time, or if you have other things to focus on, or even if you just need a break to refill your own ability to engage.

It’s a trap we all fall into. We see each other on both ends of the spectrum, the one burned out from trying to make everyone happy, and also desperately trying to milk whatever happiness we can get from those who support us. In this cycle, we totally forget that we are able to do both of these things on our own, and in the end, it’s a better and more reliable way to get what you need.

We all suffer

Think of it in terms of money, because it’s an apt analogy. If your friend is unemployed, and you give them enough money to live on (not just an emergency fund to pay a bill or keep them housed), eventually the motivation to get their own job and support themselves starts to evaporate. As you realize that you can’t keep it up long term, and you start to lessen or withdraw your financial support, the friend blames you for not being able to pay their bills, or to buy food. They can’t see past the fact that really, that responsibility was always on their shoulders, and they just chose to rely on someone else rather than their own ingenuity and self-worth to get it done. There’s nothing inherently wrong with taking a break from supporting yourself – whether financially, emotionally, or spiritually – as long as it’s a “break”, and not “a new reality”.

I heard somewhere recently that “depression is the grief that comes from the death of part of you”. That when you realize you have to make a big life change, where something you’ve relied upon for your strength, identity, or survival (or some combination thereof, like a marriage) is over; you go into a state of grief. Sometimes – oftentimes, mayhaps – this starts not when the change actually happens, but when you (consciously or subconsciously) realize that the change needs to happen. I had already phrased this differently, for my own life, as “depression is a sign that you’re afraid to change something.” So when I get sad, angry, lonely, frustrated, or depressed, I look around my life and start to sort out what change I’m resisting or running away from.

running away from home

What makes things difficult and complicated, is that sometimes – oftentimes, mayhaps – the gut reaction is to try to fix or change whatever is making you depressed, rather than facing what it really means. And this is where we start to look to others to feed us; instead of facing the fact that you’ve become radically insecure about your place in the world, and that you need to bone up and face that, work on it, change it into something better, you start to rely on your loved ones and family to make you feel more secure. Again, though, that’s something that’s best only done in an emergency-type situation – if it will keep you from, say, killing yourself or turning to self-harm (alcohol, drugs, cutting, indiscriminate sex, going into debt shopping, etc) – but it’s not the solution. It might feel like it, because in the short term you do actually feel better; but it’s only skin deep. You can’t keep burning people out in hopes that they will fill the hole in your heart; if you can look back and see a trail of dead relationships, well, you know what they say about seeing a problem happen over and over again – it means the problem is you.

OLYMPUS DIGITAL CAMERA

But it’s sounds so easy on paper – make yourself happy. In reality, it’s hard work. Sometimes it sucks, especially in the beginning. You need to figure out what you’ve been doing that keeps you unhappy – staying in a bad relationship, giving too much of yourself away, not focusing on what makes you feel good, etc – and get it under control. That’s where most people resist the hardest – they don’t want to do it. They don’t want to break up a bad relationship, they feel like they can’t, for one reason or another. And we’re fucking talented at creating bullshit reasons why we can’t do something that will severely mess up the status quo. “But this job that pays me shit wages will lead to better things!” exclaims the person who doesn’t have enough money to pay the bills, “And it’s fun, and it doesn’t feel like work to me, and I like the people I work with, and I don’t want to have to take a job that isn’t fun or convenient. So I can’t do it.” Yes you can. It will suck, and you’ll be unhappier in the short term, but when you go to sleep at night knowing that your bills are paid, you have better health insurance, and you don’t have to sweat out the next car repair, you’ll thank yourself. Not only that, but you’ll appreciate the hard work and sacrifice that you made to get to where you are – believe me.

I have faced this sort of thing so many times in my life, I start to wonder if my diagnosis of “Major Depressive Disorder” (having many depressive episodes over a long period of time) isn’t a misdiagnosis of something more simpler – “Afraid of admitting you’ve made a mistake and don’t want step up and fix it.” I’ve made tons of mistakes in my life; maybe more than most people. I had a vision in my head of what I really wanted, but every time I got close to it, I started sacrificing things that were vitally important to my sense of self to attain and maintain it. I married Mike because I wanted something resembling a normal home life – I wanted a husband, and children, and I wanted to feel safe and comforted in that sort of arrangement. Even when it became clear that children weren’t going to just show up on their own, I still clung to this idea that he and I were a family, not a relationship, and you don’t break up with your family, right? So when he emotionally manipulated me, lied to me, cheated on me, lied to my friends, cheated on his other relationships, used money to control and manipulate me, and demanded that I keep up this appearance that everything was okay; I fell into it. I fell so deep that when it came to leaving him, I ended up waiting until he left. Yes, even after I called him on all the bullshit, I was willing to stay and work it out, because you don’t break up with your family. Even after we were separated, I tried to keep him involved in my life in some way, keep him in the role of being my family, and the more he rejected me, the worse I felt.

But anyone who’s been by my side while this has all been going on, can easily tell you that the separation has done miraculous things for me. It has freed me from all of the things Mike was afraid of, namely my transition, but a million other things, too. I was able to reclaim the course of my life, and took power in sitting down and figuring out what was really important to me, because I had learned the long, hard lesson that other people was the wrong answer. I truly believe that’s why Hel did two things in the course of my ordeal – one, she wouldn’t accept other people as a valid reason to allow me to continue living, and two, she declared that I could never make other people my main focus in life.

But things are getting dangerous in that realm of my life, because so many people are trying to get my focus. All of them seem to only want a part of it, but when you add it all together, I can point to many little issues in my life coming directly from this. I have insomnia because often it’s late at night when one or another one of my friends, lovers, clients, etc, think/know that I’m not actively working/writing/doing spirit work, etc (even though often they are very, very wrong) and so they pick 1am as a great time to process what’s going wrong with our relationship. (It doesn’t help that many of my friends/lovers/etc have jobs or lives that allow them to have these conversations at 1am, either.)

...and that has it's own effects on my health and well being.

…and that has it’s own effects on my health and well being.

I get frustrated at myself, because a terrible side effect of this is that even when a person only contacts me once, asking when they might get a piece of my time and attention, I overreact. I react with all the stress, frustration, and unhappiness that has built up from each one of these requests, and there have been many. I also feel like crap, because I should be overjoyed that so many people love me so much that they want my time and attention, and I sound like a privileged brat when I complain about it. “Oh, I’m too popular! I only wish more people didn’t give a shit about me! Woe is me!”, right? It also has the added detriment of making the people asking for my time – probably because they’re lonely, or sad, or depressed, or in some other way feeling negative about themselves or their life – feel even shittier, because I’m complaining about getting exactly what they wish for; people who want to spend time with me.

There have been warnings, too. I’ve had two very clear, verified by outside sources, knocks on the Del skull that other people are starting to take focus away from what the Gods want me to be doing; which right now, that means mostly writing, resting, and contemplation. All three of those things don’t seem like they are as important as spending time with people, nor do people tend to feel bad for interrupting such things. I was ranting the other day, when someone dared hint that maybe working on the book was really my problem, that if I had a regular 9 to 5 job, in an office somewhere, that was going through a crunch time (I have a deadline coming up that I have to meet if I want my first book to come out in June, which is very important to me emotionally as well as financially), no one would dare insinuate or state that I should just stop working and spend more time with my family/friends/lovers. Now yes, if someone was in “crunch time” for, say, a year, I could see advising them to not forget that life exists outside of work. But I only got the book deal three or four weeks ago, and the “request” of spending the year in contemplation three months ago, so it’s not like I’ve been in my hidey hole for too long. I also do go out, although mostly to events, but there’s a social element to those things and it means I’m not just spending my time in front of my computer, getting a severe lack of Vitamin D for lack of seeing the sun.

I even got some outside verification that this current frustration could be a test – whether or not I will bail on my promises to Hel at the first opportunity, and make other people a priority, rather than manage to set clear and unbending boundaries around what Hel and I both want out of what time I have left. It’s not like either of us didn’t expect this; I spent much of 2012 spending time with people, making them my focus, and so like the friend who starts expecting you to pay their bills, I’ve made many people accustomed to getting my time and attention fairly easily.

The deeper lesson here, as I am beginning to realize, is this “happiness bank” analogy. I have a lifelong (even in my childhood) issue of being so afraid of not being liked, of being alone, of not having any friends or lovers, that I go way further than most to make my people happy. I mean, again, look at my last marriage; I stopped myself from doing things I really wanted to, to keep Mike happy. I wanted to change my last name. I wanted to bottom more often. I wanted to start taking testosterone. I wanted to buy more men’s clothing. I wanted to keep my hair short/shaved. I wanted to date other people. These, and so many other things, I deprived myself of because it might make Mike feel the least bit uncomfortable. He was so used to me doing these things, he didn’t even see them. And when I brought them to light, he would blame me for doing these things without being asked. That’s true. He never outright said, “Never bottom in public, it really upsets me and reminds me that you don’t bottom to me anymore.” What he did, was get very sad and withdrawn when I bottomed to someone else. I didn’t like seeing him like that, and didn’t like being around him. Easy answer, right? I fed his happiness bank with a little of my own; I gave up bottoming in public so he would feel better.

But where I seem to be failing in this lesson is that when I take a step back, and try to illustrate to my people (my shorthand for “friends, family, lovers, clients, etc”) that I need them to start feeding their own happiness bank, and stop expecting my weekly direct deposits, they feel like I’m doing something directly to hurt them, or am being mean to them. It feels hurtful for me to ask them to be responsible for their own sense of peace, because I’m taking something away from them. It is hard to stay resolute in that, and stand by my own boundaries, even with the God-threat of losing all of my relationships over my shoulder the whole time, because like every other human, when I see people in pain I want to make them feel better.

I can’t. My happiness bank is currently overdrawn, and I have to fix it now.

What everyone's happiness bank should look like!

What everyone’s happiness bank should look like!

It starts with the most direct and dire situation – I need time to write, edit, re write, and produce the book. It’s not an exercise in ego, this project; it’s a direct line to making more money. I don’t want to get into numbers, but let’s say my alimony is barely enough (and sometimes frankly, not enough) to keep living life the way I have been living it. Events think I’m getting big in my britches when I tell them I can’t afford to pay for my own hotel, but really, it’s because I’m living on about an eighth of the resources I had a year ago. This weekend, I attended an excellent workshop on how to make more money as a presenter, especially how to do it without just demanding that events give you more in terms of compensation, and it wouldn’t be terribly hard to do some of those things. Of course, however, that they require my time and attention. This book is only one step in that direction – of being able to continue doing pastoral care counseling, teaching classes, writing blogs, facilitating ordeals, mentoring, etc – and not charge an arm and a leg to do it. It would be easier on me, and on the world at large, if I can ask many people to give me small amounts of money (paying for a download, buying a book, getting a reading) than it would be to only require my clients to pay me larger amounts of money in order to survive. I can help so many more people if I distribute my financial need among all the people I’ve touched with my words, my actions, my rituals, my classes, etc.

But I need the time, energy, spoons, to set these things up. That’s, understandably, have to come from somewhere.

Like many people who have found themselves in this situation, when I talk to people about this, they’re completely understanding – as long as that time, energy, attention, spoons, etc, doesn’t affect them. Like I have this secret cache of people to whom it’s much easier for me to say “fuck off, I need to do this other stuff.” Clients think I should tell my friends to fuck off. My friends think I should tell events to fuck off. Events think I should tell my lovers to fuck off. My lovers think I should tell everybody else to fuck off. And my Gods?

There’s that scary threat. That I’ll lose it all if I don’t do the Work. And like any good submissive, the prime directive is “take care of the property”, in this case, my life and ability to live.

So instead of writing sixty different emails to people about feeding their own happiness banks, I wanted to write a blog post that might help even more people. Maybe you need to feed your own bank. Maybe you’re burnt out from feeding other people’s banks. Maybe you’re suffering from depression because you’re afraid of the piece of you that has to die in order to make a change.

First of all, this is a universal experience. Every single human being experiences all of these feelings, at different points in their lives. Some people have it harder, especially if they have biochemical predispositions for feeling depressed, insecure, out of control, or in some other way not able to rely solely upon themselves for their own happiness. It is important to reach out to someone who gets paid to help you with that, though – because that’s the reciprocity. That’s why a therapist is better than relying on all your friends; the money makes it worth their time, and they can feed their kids and pay their bills at the end of it. (This weekend, I learned about the “resentment fee”, that is, how much money will it take so I don’t resent you for asking me to do this thing for you? It’s a useful tool for entrepreneurs who are trying to figure out how to price their services.) So if you are scared of the prospect of feeding your own happiness bank, especially if the need feels too great, it might be a good idea to seek out a therapist or other professional to get you on the right path.

Secondly, you need to know what makes you happy, and learn how to achieve those things without anyone else’s assistance. And before you tell me that “being around other people” is one of those things, you can go to a concert. Join a book club. Go to a bar. Throw a party. Do things where you create and control the situation, rather than relying on others. As I recently said, it’s so much nicer and easier for me to make time for other people if I don’t also have to invent the fun thing we’re going to go do. If you ask me out to a dinner and a movie, and you pick the restaurant and the film, I’m so much more likely to feel enthusiastic and willing to futz with my calendar to go; whereas if you just whine “I want more of your time!”, thus dumping the responsibility of finding said time, and then filling it with something more than just staring at each other, which makes it feel onerous and work-like.

wambulance

Take control! Make things that make you happy manifest. Throw your own party, instead of waiting to be invited to one! Go out and meet people, rather than expect your friends to invite you to places where potential new people might be. Put on your big kid pants and if you have to fake the confidence, the self-esteem, the security in your self, your attractiveness, do it. Practice little steps, if you have to. But I promise you, when you feel more in control of our own happiness, you’ll have more love and devotion to pour onto those around you, rather than sucking them dry of theirs.

So if you’re burned out? Say so. Don’t lay the blame at the people who have burned you out, because you chose to feed them as much as you have. It may be difficult to wean them, but in the end it will be worth it. Please remember that taking time for yourself, and solitary activities, is not self-indulgent. It is fucking necessary in order to be healthy and peaceful enough to engage with others without a bad attitude. Read books. Watch documentaries. Write a shitty novel (or a great one, whatever, just don’t pressure yourself about whether it’s good or not), it’s the doing, not the result! Take up a solo hobby by watching videos on You Tube. Make “office hours” – days of the week, hours of the day, that you respond to emails from friends, or take phone calls from them, or in other ways give to others – and make them public if you have to, so people know when you’re willing to engage, and when you’re busy taking care of yourself.

You can do it!

You can do it!

Don’t be afraid to unplug. Many of my friends have been reveling in the feeling of turning off their phones, disengaging from the Internet, not watching television, and then figuring out what to do with their time. We let so many things suck us in, distract us from the real flow of our lives, that sometimes we stop living. Mike was infamous for his “clicky games”, spending hours playing Farmville and online poker, and then complained that I didn’t spend enough time and attention with him. I understand the need for these things to help you relax, but honestly, I find they are usually just as stressful as they are relaxing. Maybe promise yourself two hours a week – a week – where you turn off your phone and disengage from the computer. Tell people if you have to, but sometimes it’s better when you don’t.

Remember that in our age of everything-on-demand, that you don’t owe anyone an immediate response. No matter if they call you, text you, email you, send you a chat, a message on social media, a comment on your blog, whatever; you have never made a promise to respond in a certain amount of time. Teach your friends by example that they shouldn’t expect you to be available to them at every hour of every day. If they complain, ask them what they expect in terms of response time, and then respond with something reasonable, taking the rest of your life into consideration. I had to make the decision that no one – not my mother, not my lovers, nobody – is owed immediate responses. If it’s an emergency, they’ll tell me so, and then I can decide if I can engage with their emergency or not. They have other people they can turn to, and if they don’t, that’s on them.

In the reverse, there’s nothing nicer than getting a message from someone that explicitly says that no response is necessary, or expected, or that I can get to it whenever I have the time. (Just, be truthful about this; if you know you’ll get pissed if you don’t get a response in two months, don’t say you don’t care at all.) So when you send someone something that requires a response, let them know they can take their time with it. After all, I’d much rather receive an answer when my friend is calm, collected, relaxed, and has time to spend on it, rather than a dashed-off, two word response that makes me feel disregarded and bothersome. Decide that quality is more important than quantity, and that you’d rather have a single email a month that was chock full of attention to detail, and interesting information, than six emails a day that are written while they’re simultaneously doing four other things.

short reply

If you’re in a relationship, be brutally honest about how much time you need from another person to feel engaged with them. Even if you’re afraid they’ll tell you they can’t meet it, it’s better to not be in a relationship where you feel hungry all the time, than to be in one where your partner is constantly feeling like they are neglecting you. It creates this terrible loop where no one is happy. And if the person you want can’t give you what you need, you have a decision to make. If you can get supplemental happiness from other sources (namely, yourself, but also other people, things, hobbies, etc), then know that you’ll be expected to feed yourself from those things in perpetuity while the relationship is happening. If you can’t, then no matter how sexy, charming, interesting, or stellar-in-bed they are, you’ll both feel crappy all the time, and it’s better off not to engage. If you’re already in the relationship and realizing that you have vastly different expectations in terms of time and attention, you have to be radically honest with yourself about whether or not you can live what what they give, and if you can’t, then you need to “take care of the property” and walk. Not every break up is about the lack of love or desire; sometimes, incompatibility is more than just liking different kinds of movies or having different hobbies; it can also mean that what you envision a “relationship” as, and what they envision, are too different, and neither of you will be happy. Fuck, read 50 Shades of Gray if you want a good example of what that kind of relationship looks like.

50 shades sucks

Beware of emotional manipulation. It can be really subtle, and most of the time, the person doing it isn’t even aware of it. But a statement like, “Oh, I really want to go with you on the cruise, and I think it would be good for our relationship, but alas, I don’t have the money…if only I could find some…” may sound like an honest statement about one’s financial situation, but it can also be a form of manipulation – implying that if the person wanted good things for the relationship, they’d happily pay your way on the cruise. But that way lies dragons, my friends. Big, ugly, nasty ones that I’ve fought time and time again. It starts out small, but once someone realizes it works, they will continue to do it. Model good behavior by stating your needs and wants in direct statements, rather than wishy-washy emotional ones. “That cruise sounds like fun, but I don’t have the money. Is it possible for you to pay my way?” I had an ex who would come over to hang out, but every time we left the house to do stuff, they wouldn’t tell me they didn’t have their own money until we were there. I remember standing outside of a nightclub, her having gotten all dressed up, driving over there, and only letting us know that she didn’t have the cover until we were on our way inside. It worked, though – for years, we paid her way into everything. I had another ex who, instead of telling us she didn’t have money for food, would just choose not to eat, and make a big dramatic show of it. But it worked; we paid for her food more often than not.

But what did those people also do? They also became exes. Because over time, they kept taking without giving. It’s okay if you don’t have the money once in a while, or if you’re up front when you’re invited – “I’d love to go, but I don’t have the money.” or “I’m coming for a few days, but I need to watch my budget when it comes to ordering food.”

The same goes from time, attention, emotional energy. It’s easy to give time to someone when you don’t have a lot going on. If you are asking me to give up time I need to be working on the book; then when I ask you for time during finals week, you better be ready to give it back. If you know you can’t afford to make that sort of sacrifice, then don’t ask someone else to do it for you.

tally

It’s not like you need to keep a tally of who did what for whom when. It’s more of a feeling. You should feel like spending time with your people is a fun, happy, feeding you sort of thing. It’s okay if once in a while, you decide to spend time with someone else because it makes them happy, even if it’s a little inconvenient for you. But if you see your friend calling, and always press “ignore” because you know phone calls with them inevitably last three hours; if you turn down invitations to things you enjoy because someone will be there who will monopolize your time; if you feel guilty posting about a fun night out with a friend because you know you’ll get five nasty emails asking why you had time for that but not for them; it’s time to take a step back and figure out where the problem(s) are.

At the core of it all, though, the one thing you have completely and utterly within your own control, is your own happiness. If you catch yourself thinking, “If so-and-so would only do things differently, I would be happy”, you need to take a moment and rephrase that. “Why is so-and-so doing things that way, and do I necessarily need to engage with them while they do it?” is a start. But really, the better questions are things like, “Okay, regardless of what my calendar says, what would make me happy this weekend?” “Instead of sitting at home, moping about having nothing to do and no one to do it with, I can be researching groups in my area that do stuff I like, or find a party to attend, or call up some friends I haven’t spoken to in a while.” Ask yourself, “What can I do, all by myself, to make this situation better?” If the answer feels difficult, or emotionally challenging, know that you’ve hit a much deeper hole, and it may take some time and attention to fill it, but you can. In a way, you have to. Because if you aren’t the arbiter of your own happiness, then you’re surrendering a level of control over your life; and you’ll still only have yourself to blame if it isn’t making you happy.

Do it. Make a list, right now, either in the comments, on your own blog, on your Facebook/Twitter/Tumblr, or even just on a piece of paper – five things. Five things that would make your life a little happier. A little less stressful. A little more carefree. And it’s okay if these things aren’t inherently fun in and of themselves – “saving up enough money to pay off the car note” doesn’t sound like a lot of fun, but if not having to worry about getting repossessed will make your life happier, then it’s still worth listing.

Then, hold yourself accountable. Each day, ask yourself what you’ve done to make one of those five things come to fruition. You don’t have to do them all in a day, and I’m sure many of them are actually made up of several microsteps of their own. “I brought leftovers to work for lunch, rather than ordering out, and took that $20 and put it in the ‘pay the car note’ fund.”

..and we all know how I feel about awesome metal lunchboxes, right?

..and we all know how I feel about awesome metal lunchboxes, right?

You, my readers, know that ordinarily, I’d post my own as an example. But in this case, some of them are involve other people, and I don’t feel comfortable posting that. But know that I have my own list, and I’m doing this too. And I welcome emails or messages about this exercise, as long as you understand that until my writing deadline is met, I have a limited amount of time I can spend on email (#3 on my list).

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I Want It As Much As You Do

January 18, 2013 at 12:15 am (Death and Dying, Living, The Panniculectomy) (, , , , , , , , , , , , )

I get the gentle reminders, the emails, the comments in conversation. I hear them and I feel kinda guilty. I sit in front of my keyboard, the ragged notes hastily jotted down in the ICU by my side, and I try to describe the experience I had in the Underworld on December 28th.

Part of the problem is that I’m still remembering, bits and pieces hit me at the oddest times. I’ll be drifting off in thought and then another memory, in full technicolor, will hit me, one that I haven’t had before. I try to write it all down, try to make it fit into clunky, odd looking words, for myself if for nothing else.

The first challenge, I recently figured out with help from my friend Hugh (a wonderful writer and poet in his own right) is that there is no narrative to my experience. I cannot draw a timeline in which things happened in a precise order. I can try to force the images, the blocks, the pieces of patchwork into some sort of made up fictional narrative, but it doesn’t seem to want to be locked down like that. How does one tell a story without the sense of linear time?

Secondly, as I’ve said before, parts of it are deeply personal. It would take me more paragraphs to explain some of the symbols and images I saw, because you don’t live in my head, know my entire life story, or have the same reaction to certain archetypes/images/thoughts/feelings as I. It don’t know if the story wants to be weighed down in lots of explanations and footnotes, because it loses something in the process.

I don’t feel ready. One of the bigger messages I got is that this is a year of contemplation, and it may be that I’m supposed to go over these notes, try to recreate all the little scenes and memories over a much longer period of time. I am pretty certain some things that I remember will only make sense once I’ve had a chance to go a little further in this journey, like when an author drops a seemingly random piece of information about a character in chapter 2, never mentions it again, and yet it’s that tiny little factoid that solves the whole plot. In some ways, part of me is still down there, sitting on a rock having a big think, hoping that if I give it more time to marinate, it will make better sense to me.

I feel like I owe you a story, something, some piece of wisdom that came from my experience. So here’s something I feel like I can talk about, but ask me any questions and I’m likely to crumble.

Everything is a choice, she whispers. So many people, especially those ‘spirit worker’ friends of yours, makes everything in their life out to be an absolute, it must be this way, the Gods told me so. They speak of it as though this life was thrust upon them and now they’re just following orders. You can always say no. You can always walk away. At any point in time, if you are doing something, anything, and someone asks you why you are doing it, you should be able to tell them about your choice. Not all choices are fabulous and wonderful; sometimes the right or best choice is the drudgery and the discomfort. But it’s still a choice, still something that you made a conscious decision to do. Every single day, you choose to go to work, because you think if you don’t you’ll lose your job and go broke and be homeless and eventually die of starvation. You create this future in your head where the only right answer is the one you’ve chosen, and every other option ends in ruin. But how do you know that if you take today off, you might just run into someone at the Starbucks who’s looking for a new such-and-so, making twice as much money as you’re making now, in a part of the country you’ve always dreamed of living in?

Don’t get me wrong; there are wrong choices. Or at least, choices that have outcomes that are uncomfortable, and steer you away from your Purpose. But even if you’re going to make a wrong choice, you need to do it with an open heart, knowing that part of being alive is that you have complete autonomy over what your body does and does not do. You might have to make accommodations for things like disability and disease, but if you want to sleep 18 hours a day, you can make that choice. If you never want to see the sun again, you can get a graveyard shift job and only shop at 24 hour grocery stores at 4am. Nothing about your life is written in stone – not even what the Gods want you to do. We understand that you always have the right to say no, to choose something else, and then it’s our job to meddle and push and try to convince you to make a different choice, but there are plenty of people we approach for one reason or another who just ignore us, convince themselves we’re just a manifestation of mental illness, or purposefully choose to do something else because who wants to be in truck with an Invisible thing that might tell you what to eat, what to wear, what job to take…it feels like you’re surrendering that choice when you take on the yoke of working for us, but even in that we know, and honor, and are appreciative of, the choices you make that benefit us.

People say they can’t meditate, and you know the truth – it’s more that they cannot find a way to choose to meditate. It’s not like it’s a terribly difficult skill, and it’s easy to get better over time, but it means making that choice, every day, to set aside time to do it. People do this about prayer, about going to rituals, about celebrating their faith – they think that spirituality is a frivolous task, only to be undertaken by force, habit, or boredom. The reason we keep reaching out to people like you, Del, is because you can be living proof that choosing a life that puts spirituality at the top of the priority chain can still be a full and enjoyable life. So when you get together with your friends and gripe about what the Gods ask you to do, you’re working against this very simple Purpose.

This transitioned into talk about my friend Jon, who factored heavily into my experience with Hel, and I’m not ready to talk about that yet.

I want to share it with you. And I will. Over time. In pieces. As I get to better understand them, and glean what needs to be shared from what should remain personal. I am honored that you’re interested in what happened, that you don’t just dismiss the idea that something significant happened to me that day, but I need more time to write it out.

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