Darling, Can’t You Hear Me SOS?

August 12, 2014 at 12:42 am (Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , )

It’s now been officially a week since I have been admitted to Johns Hopkins. Although Rave and I both had tingly spidey-senses that a hospital trip was close at hand, we had no idea what we were in for.

I have been slow in telling people why I’ve been admitted, primarily because I’m still wrapping my brain around it and the effects it will have on my life going forward.

I have congestive heart failure. Specifically, right sided congestive heart failure, which is the rarer of the two. The doctors believe it was caused by my obstructive and central sleep apneas – a long story about which I am saving for another time.

I am requesting as strongly and seriously as I can that you do not ask questions or offer information (especially anecdotal or third-party info) about the causes, treatments, lifestyle adjustments, etc. THIS REQUEST PERTAINS TO THE INTERNET EVEN MORE SO THAN IN MEAT SPACE. One of the reasons I’ve been hesitant to post about this is because I am really not in a space to hear suggestions from everyone as to what to do next.

My second impetus for this post is more practical. In a perfect world, Rave would be here with me 24/7 until I was discharged. In the past, she’s done her best to attempt it but graciously accepted when she needed other people to step in. This time, things are much more challenging for us both as a unit and as two separate people.

What would be of help is people who could come and spend an entire evening with me (Ernie and Cookie Monsters may be warded against if necessary.). Throwing us a tank of gas (there are better turns of phrase, I’m sure) or helping us obtain parking passes. Specifically making plans to pick Rave up and take her to do de-stressful things. Rave may have some other ideas, and you may come up with ways to help that we didn’t think of.

I’m only going to add this next bit because I feel it’s necessary no matter how many times people have said it is not: Thank you from the bottom of my heart. We both loathe asking for assistance, especially with how generous our tribe has been for us, and we would NOT be asking if we saw many other alternatives.

Here’s the thing – I may be in here for another full week. In fact, that’s on the low end of the spectrum. It’s one of those visits where there is a goal to be met that can’t really be influenced by willpower or any kind of effort.

If you feel you want to help, contact us using our shared email address – delandrave @ gmail . com.

Permalink 6 Comments

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. 

Permalink 6 Comments

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.

Permalink 5 Comments

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.

Permalink 10 Comments

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.

Permalink 5 Comments

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).

Permalink 15 Comments

He’ll Look Around the Room; He Won’t Tell You His Plan

January 1, 2013 at 1:59 am (Hospitalizations, Living, Living With Chronic Illness, Medical, Spiritual, The Journey Towards Diagnosis, The Panniculectomy) (, , , , , , , , , , , , , , , , , , , , , , , )

Maybe it’s all the opiates, but I keep wanting to say something profound about how this year was full of upheavals for me and sound all poetic and mystical and intelligent. But really, I think it would just be rehashing stuff I’ve already said and done, and after surviving my ordeal I have very little desire to look backwards anymore – at least for now. I am choosing to look towards potentiality, towards the empty status update box, the (mostly) empty Google calendar, the blinking cursor at the beginning of the open Word document, and taking a nice deep breath.

A lot of my recent Underworld journey* put my feet on a very specific path, and the first step, 2013, is about being a year of contemplation – and really, things have all fell in line to make that very easy. I’m moving into a house where I will need much less help taking care of myself; both in that it is all on one floor and therefore I can make my own food, do my own laundry, and the like, but also because I will be living with my full time slave who receives such joy in her service. (And boy howdy does it make a difference when someone who you rely on for assistance does these things with an open and happy heart, rather than a resentful and lazy one.) I have much less teaching commitments, and I’m not really planning on chasing down more. (My plan is to submit to events I’ve never taught at before, just to see what’s out there, and possibly choose to ::gasp:: attend a few new things, too.) I have enough money to pay my bills and just a little extra to have a nice day now and again. I have the ability to focus on doing a little more work from home when I need more scratch, and a little less when I don’t.

Except for the all the follow up doctor’s appointments and the regular medical merry-go-round, I really don’t have a lot of reasons I have to leave the house. I mean, I love my friends and will want to see them from time to time, but there’s something to be said for the fact that we looked really hard to find something in the much more accessible city of Frederick, only to end up in the much more out-of-the-way city of Hagerstown. A casual trip to Baltimore or DC would be much more of a drive now than it was before, and we really only have a handful of friends who live less than 30 minutes away from H’town. On top of that, we found a tiny little complex that’s mostly meant for senior citizens (who were cool with us moving in when they found out I was disabled), so I expect our neighborhood to be quiet and respectful as well.

After the crazypants monkeyhorseplay that was 2012, the idea of spending a year in sacred contemplation sounds absolutely, well, divine to me. I know it scares some of my closer friends and lovers, because I do have a tendency to cocoon away from the world and not notice how long I’ve been gone until someone comes in and pulls me back out again. But I will have to find a balance, because I need this time of quiet, stress-free thinking and feeling if I am going to truly figure out what happened to me on Dec 28th.

I know many people are waiting with somewhat baited breath to hear about what happened to me and why it was decided that I was to return to the land of the living, but unfortunately it’s going to take me some time to piece it all together. Instead of something like having a dream, or even a living/waking experience, it was more like I came to in ICU with a head full of foggy memories that weren’t there before, even though I didn’t have the physical connection to those memories. I am fumbling at words here, and most of the examples or metaphors I would use might only serve to confuse the matter. For those of you who have had ecstatic trance experiences, or dissociative episodes, or perhaps even possessory experiences when you were the seat/horse, it kinda felt like that – like you’ve come back to your body, and you know it’s seen and done things that your consciousness wasn’t present for, but every so often something triggers a memory, a foreign thought, that feeling of being right on the tip of your tongue but not quite there.

Luckily, Rave was at my bedside and ready to jot down notes of the things I remembered in the immediate hereafter, when I was still in ICU and hadn’t yet fully realized what my brush with death was. I just had all these memories that both did and did not feel like they belonged to me. Like I said earlier, I’m grasping at words and failing quite a bit.

Over the next few days, I did some talking to various mystical types who were able to just listen to what I had to say and give their insight when they had any. I know when I get to the new place and set up my altar, some of the images will coalesce. When I get time to journal freely, and to get back into a meditative practice, and do all the shaman/spirit worker type things I have been putting off for a while now, it will all come into view.

So for now, I leave you with two thoughts based on my Journey:

1. Everything you do is a choice. You may feel like you have no say, like it’s the proper thing to do, that it is required of you, but in the end, the only things you have to do is “stay black and die!” (-Joe Clark, Lean on Me) That is, everything that is outside of your autonomic system is a choice. Spend a day being conscious of all your choices, every one. Do you always drink coffee that way, only because it was the way your mom drank coffee and so that made sense to you? Do you have to be someone’s girlfriend just because you slept with them last night? Do you know why you chose not to shower today, why you put your hair up, why you were mean to your coworker? Think about it, and become painfully aware of every single choice you make, and wonder what would happen if you fell out of step, made a different choice, went in a completely different direction?

2. Every time I go into surgery, I get a song stuck in my head. I have no idea why this was the song of my panniculectomy, but it was also heavily used as the background music for my Ordeal. It is “Pumped Up Kicks” by Foster the People. It is about school shootings, so that you’re trigger warning.

I like this second version a little better; and yes, I first heard this song on The Voice. Sue me.

 

Permalink 4 Comments

Looking Towards Surgery: The Plan

November 15, 2012 at 7:43 pm (Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , )

I am happily writing this post from the comfort of my bedroom at The Squat. I was discharged today after my “two to three” day stay that was actually six. But a lot of good was done in those six days; the abscess was repunctured and all of the infected fluids that had collected inside was drained out and cultured. I found out definitely what kind of infection (or at least one of them) resides in my pannus and was given a strong antibiotic that will help clear up some of the immediate threat. I was able to start my course of Isoniazid while being observed in a medical setting to make sure I didn’t have any negative reactions to it; and I got a much better understanding of what I face when I go back in the end of December for my panniculectomy.

The biggest goal between now and then is to keep the infection(s) as low as possible. It’s unlikely I will be completely infection-free before the surgery; after all, that’s a big reason for the surgery, to remove not only the pockets of abscess, but all of the infected and necrotic tissue that has built up in my belly since the hernia repair in April (and who knows, maybe before). I have been chastised to take the bedrest “suggestion” much more seriously, so other than some low-key social gatherings (like going over to a friend’s house for Thanksgiving) I will be spending the majority of my time in my bedroom being a big ol’ slacker.

I not only have to go to a few follow-up appointments to make sure the infections are doing as well as they can, but I have to see a pulminologist to assess my strengths and weaknesses where a long surgery is concerned. I want to get my daily life in a place where I can convalesce for a month or more at Johns Hopkins without a lot of worries back home. This includes doing what I can to help Rave get the search for a more permanent place to live into full gear, getting my meager belongings that are here ready to be moved in my absence, and making sure that I have little to nothing to stress about so I can fully focus on getting better.

In an odd way, I feel that this unplanned trip to JH turned out to be a very good thing. I was feeling a bit at loose ends about the upcoming surgery since there was really nothing planned until my pre-op appointment with the plastic surgeon on Dec 14th. It gave my doctors a chance to think and experiment with pain management post operatively that really takes my (somewhat high) tolerance for opiates into consideration. (A regimen that actually brought the pain related to all of this down from a 7 to a 4 on a regular basis, that did not require IV access was put together the day before I was discharged. Because it increased some of the meds I already take by quite a bit, the chance to “try it out” before I was home and on my own not only to make sure it addressed my pain, but was something that didn’t leave me a drooling nonfunctional mess was appreciated.)

It also highlighted some weaknesses I need to address before the surgery. Rave busted her ass, like she always does, to be as available to me as she possibly could, but at the cost of enough repairative sleep to allow her to be fully functional at work without having to rely on her wakefulness drugs or caffeine, which in turn gives her migraines. When I go in for the long haul, it will be better for both of us if we can figure out a schedule that allows her to feel useful and be available to me when I need her, but also gives her “nights off” so she can get the sleep she needs. This means we may need to find other people who have evening/nighttime availability to spend time with me, but also make sure I have occasional daytime visitors who can help with some of the needs/tasks that I can’t ask a nurse or tech to do.

I think it’s important for people to understand that although visitors who come purely to socialize are nice and appreciated, it’s not the only reason I may want friends and family around. For instance, I had a really difficult time this visit getting the nutritional team to understand and meet my basic food needs, so having people bring me supplemental food and drinks can assure that I’m not going without. I may also want someone I feel completely comfortable with assisting me with things like hygiene, rather than having to ask a stranger, especially since the inpatient experience forcibly strips you of a fair amount of privacy and autonomy already. Being able to run down the day’s meetings with various doctors and other medical professionals with someone else not only helps solidify my own recollection – which I have issues with due to some of the neuro issues – but brings a fresh perspective and alternate points of view that may hold important answers for difficult situations. Sometimes, having someone else present while meeting with a doctor can help remind me to ask questions I may otherwise forget, or bring up subjects that those who assist me might benefit from knowing. Even something as simple as watching as a nurse dresses a wound in a particular way can then lead to having someone who can teach those who can’t be present when it’s demonstrated (but who will eventually be in charge of doing the dressing).

And it’s worth mentioning that this trip was incredibly emotional for me. Admittedly, part of the problem was that I got my period two weeks early (practically unheard of for me) so I’m sure my hormones were all messed up trying to deal with that. But I had two days where my anxiety was bad enough that the nurses were suggesting I take some of my anti-anxiety medication, and not having someone who could serve as a touchstone to reality exacerbated issues. I am, by no means, trying to guilt people about not being able to visit, especially since this trip was unplanned and happened to fall almost entirely during a work week, but more to share something Rave and I learned about the power of visitors.

One of my fears about how the planning for the upcoming surgery is falling out is that I have plenty of friends and lovers who are coming from out of town to be there directly before and after the procedure, but most of them will have to return home once I am stable. That leaves me with several weeks where I will still be stuck there, so it might behoove me to reach out to friends and family and set up some planned visits during that time. It can be anything from a local friend making the commitment to come “every Wednesday afternoon”, to other long-distance friends making a trip down to spend the weekend. If you’d like to volunteer for this important service, please email me at awesome.del@gmail dot com so I can start putting together a calendar. If you aren’t local and want to come for a visit, we have lots of resources not only for crash space, but also for people who can lend you a car, or drive you around, or provide meals so together we can minimize the cost. In that vein, if you have those sorts of things you could offer others, or skills/talents/abilities that we might be able to put to good use during this time, please let us know.

That being said, I think it’s okay to mention that in the next few days, Rave and I are beginning to collect funds specifically to help defray the costs of those who have the time and/or inclination to visit, but for whom money is an issue. It’s not the only reason we’ve decided to pass the hat, but it’s one of the most important ones. We’ll also accrue some costs that come with a long term hospital stay that medical insurance doesn’t cover – gas and parking costs, comfort items, etc. Most importantly, my insurance doesn’t cover any of the sorts of things one needs once home again, like bandages, tape, cleaning supplies, and the like. The nurses usually throw together a “care package” of items to help me out, but when I had the first drain in, we eventually ran out and had to source a lot of this kind of stuff on our own.

When the announcement goes out, there will also be things that people who live too far away, or for other reasons cannot contribute time, resources, or money, can do to be of assistance. For example, we will have a phone/email tree set up so people can be kept up to date with how I’m doing without having to clog Facebook (or share intimate details about my recovery with people I barely know) or having to wait until there’s enough for a blog post. We will need a few “captains” who can be in charge of a list of three or four people; make sure everyone gets information and also to collect questions/observations and aggregate them so the “home team” can address them without having to compose the same response several times. (You know, this sounds so complicated, but I’m actually kinda flattered that there are so many people who care about me and my welfare and want to be kept in the loop. When I stop worrying about the details and look at the bigger picture, I’m always humbled by how much affection there is for me in the world. Really.)

Finally, I have “appointed” my friends and (somewhat unofficial) clergy persons Hugh and Shelly to undertake the spiritual support side. There will be a post before the surgery that will help coordinate all the wonderful prayers, energy, and will-working that people have so generously offered.

For now, I’m very glad to be home and in comfortable surroundings. I’m pleased that I have a pain control plan that actually makes things tolerable, and can be proactive about fighting off some of the infection to make the surgery’s success easier. This was a welcome eye-opener on how Rave and I can better plan for what’s coming to minimize our stress and help distribute the work so no one person is overtaxed and everyone – me included – gets the care they need to get through this.

Permalink 2 Comments

By The Numbers

October 18, 2012 at 8:07 pm (Hospitalizations, Medical, Mental Health) (, , , , , , , , )

12/28: The magical date everyone’s been asking me about. This is the day my panniculectomy is scheduled. I guess 4-6 weeks meant 4 months, but that’s the way the cookie crumbles. I was much slower in reaching certain benchmarks, and we’ve just gotten to the point when it’s prudent to schedule the surgery and hope I reach them by then.

8:30am: The time on Tuesday when the stitch holding my drain pulled. I awoke to a sharp pain at the drain site and immediately knew what was wrong. It’s not surprising: drains are meant to last a few weeks, and this one had been in for exactly two months the day it failed.

3″: Approximately how far the drain “fell out”. It was all tubing, so I just took a deep breath and guided it back in. This turned out to be a mistake.

1hr: The time it took for my general surgeon, who was in charge of the drain, to respond to my email. She’s super awesome and my favorite doctor at Johns Hopkins by far. I called both her work cell and her office and left messages, but decided to email her in case that would be faster. It turned out to be the right call, as she saw it as she was coming out of an early morning surgery and was able to schedule me for an emergency appointment that day.

30ml: The “goal” daily output from the drain that was the benchmark I had to meet to have the drain removed.

60-100ml: Where the average daily output from the drain was when the stitch blew.

5: The number of messages I left with the lead surgeon trying to schedule a date.

50-80%: How much bed rest a day the general surgeon wants me to get. I told her I had just made plans to go out of town for the first time since the hospital stay, and she reluctantly gave me permission as long as I take lots of breaks and lay down at the first sign of pain or discomfort. Honestly, that will be kind of hard where I’m going, but I am going to bring my own chair so at least I know I have a place to sit down if I start to feel bad.

When I get back, I have a few other social engagements I desperately want to participate in, but I’m going to have to take everything one day at a time. Two days after the drain was removed, and I still feel like someone punched me in the gut hard enough to leave a mark. It hurts to walk around. I’m not looking forward to two months of bed rest, but it looks like I don’t have much of a choice.

10min: How long it took my general surgeon to get the lead surgeon’s scheduler to put me on the calendar.

60:1: The odds I give that I’ll actually make it to December 28th before I have to go back to the hospital due to the abscess causing problems. I’m going to try my hardest, as several people are planning to come in from out of town in order to be there for the day of surgery, but I secretly feel that this is going to turn into an emergent situation before then.

So what does this all mean?

Well, now the big fear, and a pretty likely outcome, is that the abscess will regrow. The way it was explained to me, is that the output was still so high because the abscess had become a deflated balloon, and so instead of just collecting fluid within it, it was going straight to the drain. Since the drain had to be removed (it could have been saved if I hadn’t pushed those 3 inches back in, but since I had, we had no way to know if it was in the right position, or if it had been exposed to bacteria – and with my history of infection, it was the better choice not to gamble), that fluid needs to go somewhere. There had been some hope that the wound would stay open and continue to drain for a few days, but it closed up the next day.

I also still have pain at the bottom of my pannus, from the other infected site. The Infectious Disease people are writing off all of my current symptoms – low grade fevers, feeling flu-ish, incredible fatigue, etc – to the infected tissue in my belly. My general surgeon isn’t so sure, but basically they’ve reached a stalemate, as there’s little the general surgeon can do about it.

I had planned to write this Tuesday night when I got home from Johns Hopkins, but I’ve been suffering from major fatigue and pain, and so I ended up making a social media announcement about the date because so many people had been asking. I spent most of today laying in bed in and out of sleep – it’s hard to get long stretches of sleep due to pain.

I’m going to do what I can to try to go to CT this Saturday. All the plans are in place and Rave is doing all my packing in hopes of saving me a few spoons, but honestly I’m having a bit of a brain vs body war over it. I really want to go for a number of reasons – the foremost being that Saturday is my fifth wedding anniversary and the last thing I need is to be home moping about my failed marriage and how frustrated I am with my STBX – but I know it’s not the best choice medically.

I’ve written about these sorts of choices before. If I just go by the numbers, I should stay home every single day between now and the surgery, but that would destroy me mentally. I now live pretty far away from most of my friends, so it’s not like people are just dropping by for a visit. If I want any sort of social stimulation, I’m going to have to go out and get it. I’ve cancelled all of my teaching gigs so I don’t have to worry about obligations or having to be “on”. Most of the social things I’m looking at now are casual enough that if I have to cancel, or modify how I handle them, I can make that call on the day of. Saturday’s a little complicated because it involves other people – the people I’m riding up with, the people I’m sharing a hotel room with, and the people I’ve told I’m going to be there – and although I know all of them would understand if I had to cancel, I don’t want to.

I need my mental health to get through this as much as I need my physical health. If I stay in bed and get lost in streaming videos and social media, even my antidepressants won’t save me from the terrible depression I’ll feel. It’s hard enough hearing about all the fun things my STBX has the money to go and do while I’m worried about each little expense; the loneliness and isolation would drive me over the edge.

Like all good things, I need to find a compromise.

But it’s not as easy as it sounds. As I prepare to grieve the loss of my Beloved Dead this year – two friends and my grandfather – and begin to solidify the end of my marriage, normally my response would be to fill my world with positive and distracting social engagements that remind me that I am still a fun, vital, interesting person worth knowing. However, the more time I spend out of bed and running around, the higher the chances of the abscess needing more intervention, which means time in the hosptial, which obviously means no social engagements.

I also have to struggle with another one of my mental illness issues – the more time I spend at home, the more frightening and overstimulating the outside world becomes. There have been times when I’ve been home for a few weeks, and merely going to a IHOP for a meal feels overwhelming. However, when I see people and go out on a regular basis, the less I’m afraid of random strangers. It’s not logical, but it’s how my brain works. This time around, it’s all aggravated by the paranoia I’m feeling about the social circle(s) I share with my STBX; I feel like I don’t know who I can trust, who I can be honest with, who I can share how I’m really feeling and the dirty details that I’m not making public. I’ve already learned that someone I thought I could turn to has decided to become closer to him, but I only found out when someone I trust told me about this. I feel like I’m surrounded by people I have to be careful around, and only have a handful of confidants that I can relax and say whatever’s on my mind.

I should be happy. I have been incredibly frustrated that I didn’t have a surgery date, so I couldn’t really plan what the next few months were going to look like. Now I have it, but so much is going on, I can’t even take a few moments to feel settled. Instead, I’m just depressed, tired, worried, and slightly agoraphobic. And yet I miss people, specific people but also just being in a crowd of people I can talk to.

Keep your fingers crossed that I’m able to get away this weekend. It will do a lot for my depression, and I am making several contingency plans to take care of myself as best I can. And if you’re interested in coming for a visit, we have lots of room.

Permalink 2 Comments

3am

September 9, 2012 at 4:45 am (Death and Dying, Living, Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , )

The hospital, as an organism, never sleeps. In the hallways, it’s perpetually noon with the bright lights and the temperature control. There are people wide awake, doing their jobs like evry other day. They aren’t surprised that you’re awake, crying, holding your abdomen in pain.

They realize it’s time for more pain meds. You sigh a little. They help, at least the IV ones do, but your pain is a seven and your best hope is to get it to a five. You start to feel a little disomfort in your arm, but you don’t really care because your belly hurts worse.

The nurse comes back and starts to push the opiate, but it doesn’t feel right for both of you. Your arm starts to swell, and swell, and burn. She disconnects the highly acidic antibiotic and pulls the IV. She tells you that even at 3am, they can get an IV tech to put in a new line.
Read the rest of this entry »

Permalink 10 Comments

Next page »