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.

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Ten Hard Lessons I’ve Learned About Being Chronically Ill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1. Do whatever you have to do to survive. 

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

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

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Own Your Own Happiness

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

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

happiness piggy bank

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

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

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

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

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

We all suffer

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

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

running away from home

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

OLYMPUS DIGITAL CAMERA

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

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

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

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

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

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

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

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

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

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

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

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

What everyone's happiness bank should look like!

What everyone’s happiness bank should look like!

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

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

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

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

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

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

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

wambulance

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

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

You can do it!

You can do it!

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

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

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

short reply

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

50 shades sucks

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

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

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

tally

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

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

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

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

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

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

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

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Remote Support for Surgery: Part II

December 27, 2012 at 12:12 pm (Death and Dying, Living, Spiritual, The Panniculectomy) (, , , , , , , , , , , , )

This is for people who are more inclined to working with Deities and spirits rather than physical healing.

Here is the core of the visualization, written by my friend Hugh:

INTENT:
to convince Her that Del can, will, and should be healed and strengthened in body and in spirit by this process (making him more useful to Her on both sides of the veil), and that his work while embodied has been valuable and effective, and will be supported by his tribe. This is something to be laser-clear on, and should hover over/pervade everything.

1. Ground, center, create sacred space. Do whatever you do to get into a prepared and safe space for working.

2.Visualize the lock and hold the image in your mind throughout the working. I’ve put the pic up on Flickr for reference: http://www.flickr.com/photos/19489165@N00/8299095150 I will have the physical lock with me. Start the chant I came up with earlier and keep it going through the working if possible:

This is the lock and Del is the key
Safe is what we need him to be
Safe return to flesh and bone
Safe return to hearth and home
We need his work, we need his art
We give him aid from hand and heart

3.Respectfully address/invoke Hel.

4.Visualize the rune Ehwaz and the journey that Del has taken and is taking (both spiritual and health-wise).

5.Visualize the rune Ansuz and the ordeal/trial that Del faces.

6.Visualize the rune Sowilo and the valuable and powerful things that Del can do only if he is incarnate in a physical body. If he’s done such things for you or friends/loved ones/etc. in the past, that’s good to include.

7.Visualize the rune Fehu and what you are willing to do to support Del’s Work; how you will help Del to want to keep living and do the Work in spite of everything.

8.Cycle back to step 2 as many times as needed.

9.Thank Hel for Her time and attention; release sacred space and ground and center again. Do whatever you need to do to come back safely.

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Remote Support for the Surgery, Part 1

December 25, 2012 at 12:45 am (Living, Spiritual, The Panniculectomy) (, , , , , , , , , , , , , , , , , )

There are two things happening to me on the 28th; on this side of the veil, I’m going through the physical act of having a risky surgery. On the other, I’m going to be facing a challenge about whether or not I really value this body and life I have been given, and whether or not I am willing to commit to making my Job my first and most important priority. (And for my community and family of choice, the second part is about committing to being of assistance and support in helping me do what I need to do, as well.)

Because these are two fairly different goals (surviving the surgery vs being able to move forward doing my Job), I’ve asked two separate priests to construct rituals/visualizations that people can participate in. These are the same visualizations that will be lead in the hotel room we’re calling home base during the surgery, and it will be happening around 10am that day.

Part 1, written by my friend Raven, is for those who feel more comfortable sending energy and Will towards making sure my body survives the surgery. She asks that you use this bindrune as a focus:
bindrune

This is what she writes:

Restoring The Temple

Basically, We are focused on strengthening the body to endure and survive the surgery, and helping
create the best “vehicle” for Del to continue on with his life in. We are the team who had found the
rundown temple/humfour/peristyle/stone circle/church, and wish to restore it to functional sacred
service.

The sacred structure must be cleansed. That which is harmful or rotted must be removed, and the
structure must be repaired and shored up.. it must be made strong so that it can endure and last to fulfill it’s purpose. It must be solidified, from the ground up… made free of what does not belong, and made ready to receive back its spirit.

Whatever faith-path one practices, the idea of a place that is sacred is not an alien one… it gives us something communal to work together on.

When I built the bindrune, my partner, looking over my shoulder, said “That looks like scaffolding”, and
when he did I knew I had gotten it right. The bindrune can be carved into a candle, inscribed with ink,
drawn with chalk, or merely held in mind.

A word of caution to those who may not be familiar with bindrunes:
Please do not ADD other symbols to this bindrune. If you wish to use other symbols as additional foci, like pentacles, crosses, veve, etc, have that symbol separate from the bindrune. Adding to a bindrune can “accidently” add in runes you did not intend, so of which might be at cross-purposes to this working.

In addition, I wrote some elemental correspondences for the various challenges I face during the surgery and recovery:

1. My heart. (fire) I tend to have low blood pressure when I lay down, and even slower when under sedation. I need it to beat strongly and regularly, but not so strong as to cause excessive bleeding.

2. My lungs/breathing. (air). I have sleep apnea, and also laying flat on my back makes it very difficult for me to take deep breaths. Also I have a mass in my lung, and there’s some concern it could cause a blockage at the wrong moment.

3. Fluid cross-contamination (water). With all this pus and old blood and infected tissue, there is grave concern that in the process of getting rid of this crap, some of it will leak or osmose, possibly causing a more systemic infection, or Hel forbid, cross the blood/brain barrier. It may sound like a remote possibility, but three different doctors have stressed how dangerous this could be.

4. Immune strength (earth). I have a weak immune system, obviously, because that’s how I got here. I need my body to be strong enough to survive the shock to the system of losing a very large removal of tissue and mass – the amount of flesh/fat they plan to remove is about equal to losing an adult leg from the hip. I need my immune system to keep me alive while the rest of my body adjusts to the loss, and then I need it to keep me from picking up new infections while the wound heals. I also need the healing process to move at a healthy but quick pace…I really don’t want to spend
more than a month in the hospital, but if the going is slow or challenged…

Oh, and 5. The surgical team. Dr. Sacks (plastics) is the lead surgeon. Dr. Rushing (aka Dr. Awesome)
(general surg) will assist. Dr. Haut will oversee my convalescence. Two of my favorite nurses on
the surgical floor are Pearl and Ashe.

Finally, a word about Reiki. I’ve written before that I do not react well to Reiki. However, I know it is a healing modality that many of my friends and acquaintances are well versed in. I would ask that if Reiki is what is most comfortable to you, that you focus on sending it to the people who will be the most active in supporting me – namely Rave. Wintersong Tashlin has built a “redirect”, so if someone who doesn’t know about my Reiki thing, or who inadvertently sends it to me anyway, it will bounce off of me and go to whomever is wearing the receptive amulet. So if you don’t know who in my team might need it the most, go ahead and send it towards me and it will be redirected to whomever needs it at the moment.

I will try to post Part 2 soon, which will deal much more with Hel, the Norse Goddess of the Underworld, and is a little more complex. I ask you to choose whichever visualization/ritual that is more attuned to the sorts of practices you are used to; failing that, prayers are always a good choice. You can pray to whatever Deity you typically work with, or to Loki (in order to be compassionate about the contract negotiations), or to Hel (to allow me to return to Midgard to continue my Work).

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Things are Looking UP!

November 26, 2012 at 9:38 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , )

I get comments sometimes that this blog has turned into one gripe after another about how negative my life is; a “bitch fest”, “too much focus on the negative, and not enough positive thinking”, etc. So I thought since I’m having a pretty red-letter day that I would take a moment to let all of you know some of the positive things that are going on in my life.

First and foremost, when I was seen for my post-hospital stay follow up, my surgery team jointly decided that there was no need for me to be seen again until my pre-surgery appointment on December 14th. This is great news, and basically turned 4 appointments into one. We decided to leave the drain in until surgery, both to reduce the number of appointments and also to keep the abscess from cultivating more ick before it’s surgically excised.

We’ve found a great service that we’re going to be using to control all the informational traffic around the surgery and aftermath; rather than litter social media and having multiple phone trees, we’re using Wiggio as our sole information stream. We chose Wiggio because it has a ton of features that will be useful for us, including the ability to send mass text messages, have a shared calendar to schedule visits, project folders to organize different things that I or Rave will need help with, and lots more. The way the Wiggio works, you need to send us an email at delandrave@gmail.com to request an invite; we did this so we can know everyone who is on the group and make sure people who are on there are more than just passively interested in what’s going on. There will be some posts made to social media, so if all you want to know is if I’m out of surgery or ICU, there will likely be posts to that effect eventually. On the other hand, if you want to be actively involved in helping Rave with things during my hospital stay, or want up-to-the-minute information on my situation, please feel free to ask us for an invite. If you’re not someone we already know, you may want to include some information as to how you know me and how you expect to be helpful, so we have some idea. Like I said, we want to make sure everyone who is on the Wiggio is someone we trust to be an active partner in what is happening.

In that vein, the house that we’ve been affectionately referring to as “The Squat” is on the market, and the arrangement was that we could stay here until it sells. Well, an offer has been made, and if the bank accepts it, we have 45 days to vacate the premises. But fortunately, we found a perfect place for us right in southeastern Frederick; Rave went to tour the house today and found it to be old and a little beat up, but otherwise totally awesome. It’s on a 41 acre horse farm, a four bedroom house with a master bedroom/kitchen/full bath all on the first floor. I love that we’ll have space for two guest rooms, which will double as a sewing room for Rave and an altar room for me. We should be getting an application tomorrow; we tried to make a deposit because the landlady said she’s had a LOT of interest, but she wouldn’t accept it. So for now, we just ask that you keep your everythings crossed that the application goes through with flying colors and we can solidify a place to live. It would mean a large burden off of both of our shoulders, so we can focus on the surgery without having to split that focus with the arduous task for finding a place to live.

And what’s made that all workable has been the incredibly wonderful response to our request for help. We’ve received so many packages from my Amazon wish list, and a blessed amount of financial assistance. We have enough to make a good deposit on the house, should we pass the application. However, we can always use more help, so if you haven’t had a chance to check it out, please take a look at my entry detailing the many ways you can be of assistance to us.

That’s not all! Rave went down to my old house to pick up some belongings and happened to find a piece of mail I have been waiting on for four months! Yes, that’s right, my name change has been approved, no court date needed! I am so incredibly pleased that my name is finally my own in all senses; I have been told by my Gods that I am *never* to change it again, no matter what. I finally have a name I chose for myself, one that represents who I am and how I move in the world. I took my long-time nickname and nom de plume, “Del”, as my first name. I kept the middle name my parents gave me, because it’s pretty awesome and also as a tie to my familial line, so it stays “Astra”. Finally, I was able to shed myself of my STBX’s last name (which I wasn’t thrilled about taking in the first place, but did it as a token of my love and devotion to him) and take my Clan’s name, something I’ve been wanting to do for quite some time but my STBX was totally against. So my full legal name, which I am unafraid to post on the Internet, is Del Astra Tashlin.

Another great thing is that I am now on a course of drugs to finally treat my latent tuberculosis, and I haven’t had any withdrawal or other terrible side effects. I, by no means, am trying to say it’s been a walk in the park, especially combined with all the antibiotics and other meds I’m on, but it’s nothing like when I tried the Rifampin, twice, so I am so pleased that someday, I will be TB free.

So in all, things have been looking up here at The Squat. We’ve finally hit a streak of good news, tons of support from our friends and family, and are preparing for a surgery that, although it won’t heal *all* the problems I face, will significantly reduce my suffering (especially in terms of infections and repeated hernia surgeries) for some time. There is hope that while I’m in the hospital, they will be able to run a battery of tests to help discover why my immune system seems to be so suppressed/why I seem to get every infection that walks by, as well as possibly transfer my pain management to an office closer to where I live now (the one I currently see is now over three hours away!), and also get more Johns Hopkins doctors interested in my case so I can get some integrated care – where the ID doc knows what tests the neurologist ran, and the pain management doctor can talk to my surgeon about how to administer meds so my chronic *and* acute pain can be treated simultaneously, and the like. This is all very exciting, and a really good reason to live, which is the real thing I’ve been looking for these past four months.

Thank you to all the Gods and Spirits who have been with me patiently while I thrashed through my suffering! May they stay beside me through the trials ahead, but also be able to celebrate with me all the good things that have come into my life! Thank you to all the people who have done the same!

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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.

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Book Review: Dion Fortune’s Book of the Dead (Crossposted)

October 25, 2012 at 7:26 pm (Death and Dying, Living, Spiritual) (, , , , , , , , , )

I am crossposting this on both of my blogs, since the subject matter is germane to both of them in different ways; I have different subscribers on both blogs, so I wanted to make sure no one missed it.

Dion Fortune’s “Book of the Dead”
published by Weiser Books
Amazon link: Book of the Dead

This book, which is probably better called a “pamphlet” at it’s very short 77 pages, was originally published in 1930 under the title, “Though The Gates of Death”. It’s not usually listed among her works due to its brevity, but I was lucky enough to stumble upon it while searching for new books to read on my Nook. This version was originally published in 1995 by the occult group she founded near the end of her life, “The Society of Inner Light”.

You’ve maybe heard of her before, because she was a strong influence on authors and occultists who created the Pagan traditions and thea/ology that we take for granted today. Diana Paxton and Doreen Valiente both credit her writings as a go-to when they were beginning what we now call Wicca. She’s also written one of the best books ever on the subject of psychic self-defense, titled “Psychic Self-Defense”. That is a book I frequently make students read and digest.

She was very active in the burgeoning occult underworld in the 1920’s and 30’s. Interesting to me, she had a nervous breakdown and went into a psychiatric institution right before she began having psychic and other magical experiences (madness path, anyone?). She studied various occult systems, including Crowely’s Golden Dawn, the Freemasons, and the hottest parlor religion, Spiritualism – a form of Christianity that held strong beliefs about being able to contact and interact with spirits of the dead and astral travel. She was also a “lay psychotherapist” (not far from what I do, sometimes) who had taken classes on the roles of psychology and psychic phenomenon from the Theosophists. And if that isn’t cool enough, there is scuttlebutt that she was one of the occultists the British government employed during WWII.

Needless to say, I was thrilled to find an E book version of her Book of the Dead. Working with spirits of the dead, and traveling to various other planes of existence, is something Ms. Fortune was very well known for. I was eager to hear what her thoughts were on the process of dying, and what the living can do to assist the dying in their crossing over.

These are the two things that the book focuses on the most – what the body and soul go through when one begins to die/what the soul can expect upon severing itself from the body, and what the living can do to assist the dying in making a gentle transition from life to death.

The first place that felt like a slap in the face (there were a few) is that she very strongly felt that there was no way that “natural death” could occur before “three score and ten years” (70). She explicitly states that dying from disease was not a “natural death”, because it meant that you were less than vigilant with your body. I believe this, like some of the other things I strongly disagree with her on, is a product of her era. This was before cancer was really known or understood, and although there still lingers some attitudes that some cancers are the patient’s “fault” (lung cancer, I’m looking at you!), I think our society’s view on those who contract terminal illnesses has radically changed since the 1930’s.

She describes three stages that a soul goes through after the last breath is released. The first is the disentanglement from both the “clay body” (your physical form) and the “etheric double” (how you envision yourself when you’re not looking at your body, basically). This can be assisted by those present at this stage by attempting to connect telepathically with the dying and give them permission and encouragement to move on. Also, having a source of prana (energy) present is useful – thus, the tradition of lighting candles and spreading flowers for the dead. Otherwise, the dying may use the prana from someone present, which she says explains why loved ones who suddenly feel tired shortly after the last breath have no explanation for it. I don’t know if I buy that entirely, since I know there’s a release of stress and energy when you know someone you’ve been sitting with is finally dead, and that might be confused for “stolen prana”. But it can’t hurt to have a good source handy if you’re sitting vigil for someone.

The second phase she calls “Purgatory” (remember, she was still seeped in Christian framework, even though she was an occultist). Supposedly, the soul is shown visions of their unrealized or unsuccessful desires. She talks about Karma a lot in this section, but I wonder if she only uses this term because it was the one accessible. The soul either has to overcome its attachment to these desires and failures (and thus move on to become a Master on the Higher Planes) or be reincarnated in order to live out another life to learn how to overcome them. Interestingly, Fortune states that while souls are in this phase, which starts “a few months after death”, they are not contactable, and cannot hear the summons of their loved ones on earth.

The third phase, “Heaven World” depends on what the disposition of the soul is – it can either ascend and become a “higher being” – a soul that assists in God’s work, or works with other freshly dead souls, or some other purpose – or you prepare to be reborn into a new incarnation. There is a time between phase 2 and 3 where a soul may be communicated with again, but Fortune warns that if you continually contact a soul in this phase, or bring them to mind/heart on a regular basis (like on their birthday, or an anniversary), you may be inadvertently keeping them from moving forward. If the departed does not feel like their old life is sorted, and their loved ones can move on and live their own lives apart from them, they cannot either ascend or be reincarnated. This meshes with some of my experiences working with dead who have been trapped due to similar circumstances.

I found many of her insights incredibly interesting, especially her thoughts that those who are psychically or magically aware have a much different death experience from those who are unused to fairing forth from their earthly bodies. She gives very veiled references on some exercises one can do to make that transition easier, and to retain consciousness during these processes. She attributes that most people cannot remember past lives, or what the after life is like, because their souls were “asleep” during them, and they attribute the experiences to a dream. She points to those who have a good handle on who they were in past lives as being more magically gifted in one way or another, because they are closer to becoming “masters”.

However, there was some stuff in there that I just found wacknutty. As I posted on Facebook, she states forthrightly that if a soul is severed from their body traumatically, like in a car accident, that soul will find itself inside the body of a baby about to be born. She claims that it is old midwives wisdom that if a baby is born with “old eyes”, it will die prematurely. Yes, she says that the traumatically severed soul jumps into a baby’s body so it can die properly, shortly after birth. I really wonder if she had a friend/friends who had lost children and were looking for some occult reason for it, and this was what Fortune came up with. Otherwise, it just seems too cruel, even for me.

I found this to be a really great read to get me in the mood for Samhain, which I will celebrate this weekend. It made me think very hard about what it must be like for a soul to leave a body and find out that it is more than the flesh, and gave me much to think about not just about where we go when we’re dead, but how we get there. It also gave me some incredible insights on things I can do should I find myself sitting vigil next to someone who is terminal. Some of it is definitely a product of the era it was written in, and there’s a lot of Christianity to translate to your own belief system, but the translation isn’t that hard. (She might have even been using it because it made it easier to publish in that time.) I suggest giving it a read, and it’s super short (77 pages). If you are a Nook user and wish to borrow my copy, complete with my own notes and thoughts, drop me an email and I’d be happy to lend it out.

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Reality and Fear: Being Disabled and Separated

August 25, 2012 at 9:56 pm (Death and Dying, Disability, Living With Chronic Illness, Mental Health, Uncategorized) (, , , , , , , , , , , , )

This entry is for Winter, who suggested I write something about this.

Being separated when you’re disabled is scary. I mean, being separated is pretty damn tough on anyone, even if they know or suspect that it isn’t permanent. I don’t mean to make myself look like a special snowflake, but I’m feeling like being separated when you entered into the marriage a fairly-healthy individual, and are leaving it chronically ill, presents its own buffet of new and interesting challenges.

My spouse supported me throughout most of the marriage. I made money from time to time, but in such small amounts that there’d be no way I could ever support myself in the real world without someone to pay the bills. I never took applying for disability seriously, mostly because he seemed pretty happy and willing to provide, and he made enough money that my lack of a steady income didn’t hurt us in any way. In hindsight, this was a giant mistake, and I knew it the whole time, but between feeling ill and being terrified of bureaucracy, I made it anyway.

 And here I am, now living at a friend’s place temporarily, trying to figure out how I’m going to afford the future. There’s no question I’m entitled to spousal support/alimony, but we seem to have very different views on what that looks like. I’ve started the lengthy SSDI process, but I figure I can’t even begin to dream about that money for at least a year if not longer. I’m seriously looking at some ways to make pocket change working from home, but in such a way that doesn’t threaten my chances with SSDI.

And it’s not only the money, although sometimes it feels that way because it’s the biggest monster peering out at me. I lost the one person who walked through my whole downward spiral with me – who knew me when I was relatively healthy, and saw all the incremental steps towards chronic illness. I lost a person who cared for me, in a physical sense, in that he massaged my legs when they hurt, and stayed with me in the hospital when I was sick, and who did kind things for me when I was unable to do them for myself. He made me feel as though love could actually be unconditional, at least for a time, as he tried very hard to make me feel bad about my failing health.

However, I would be lying if I didn’t think that my illness didn’t play into how things fell out. I needed him to see reality for what it was – to accept that there was no mythical day coming when I woke up and felt completely well again. I think he chose to start a new relationship behind my back because he needed an escape from ours – a place where he was the one taken care of, rather than doing the caring. I think he needed a pair of arms that made him feel masculine and virile, and for some reason I had been failing him on that account.

On my side, I was frustrated beyond belief that he couldn’t see how much living in one room day in and day out was affecting my mental health. No amount of me begging and pleading for him to find accessible housing – or even somewhere I could make due – encouraged him enough to take any real action. As recent as a few months ago, he was trying to convince me that if I could just stick it out for one more year, then we could buy a house rather than rent and wouldn’t that be better? And yet he didn’t understand when I told him no, that wouldn’t be better. I did want to own our own home, but it was a million times more important to me to live in a house where I could move around safely and without pain. When I walked out of that house, I knew for certain that he still doesn’t understand that.

 But enough about our shit. I want to talk about the challenges of being on my own, and how life is changing, now that I am separated.

 

  • I am terrified for my financial situation. There’s all the regular expenses that one has to deal with, like rent and food and utilities; on top of all that, things like health insurance and my many prescriptions weigh heavily on my mind. For now, I am still figuring things out, and hopefully with the help of an arbiter we can come to an equitable solution.

  • I am coping with the feeling of abandonment, especially during a time where my health has been more of an issue. I’ve both been in more pain and had less mobility, and also feel closer to an answer than I have in the past. Losing the one person who’s been with me since the beginning (and who has stated that they are no longer interested in hearing about anything medical going on, even emergency level things) has been very difficult for me to swallow.

  • Not being in the place where I have grown to feel most comfortable in, which has been my shelter from the world for a very long time, is challenging. It doesn’t help that where I’m staying now (with very open-hearted hosts, mind you) is much further away from all of my regular doctors. So what was once a ten minute trip to see my GP is now an hour long trek, and that’s if traffic is in our favor.

  • I am irrationally afraid that this will start some sort of chain reaction, where my other lovers will somehow come to the realization that being in a relationship with me is more difficult because I am ill. It also makes me fear that I will meet no one else who will ever want a spousal relationship with me, seeing as I am very damaged goods.

  • Through many difficult conversations, I have come to realize that living alone is not a real option for me. Thankfully, I happen to have someone in my life who just also happens to be looking to relocate, and so I was able to come to an arrangement with them about finding somewhere together. However, there’s a little part of me, the part that feels abandoned, that hates that I can’t just strike out on my own and prove that I can survive without him; and I fear that this new arrangement will only serve to highlight how very much I can’t stand on my own two feet. Many people have theorized that the reason he betrayed my trust is because he assumed I was physically incapable of leaving him, and I’m worried that’s in fact the case.

 

That’s about all I feel comfortable sharing with the blogosphere at the moment. Obviously, I have a lot of feelings about the situation in general, and I don’t want to lose the point here. I want to find a way to plumb the depths of this experience and find a way to express how it relates to being a disabled person, a person with a chronic illness, a person who has lost the partner they thought was going to walk the whole road towards death with them.

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Need vs Want

August 3, 2012 at 9:36 pm (Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , , )

It’s been a week since I made the decision that my marriage was functionally over. There’s been a whirlwind of questions since then; from him, my friends, and most of all from me. He is trying to convince me that he wants to fix things, that he is really committed to this relationship. I’ve also been looking into temporary options; it’s been hard sharing living space with him, as it seems any time we sit down to talk it turns into emotionally wrenching, snot nosed emotional venting. I can’t keep that up on a daily basis and maintain my sanity.

One of the big questions is about where I am going to live, both in the short and long term. I told him I would stay here for 30 days, but that’s quickly turning longer. I’m scheduled for surgery on Sept 19 and I have nowhere else to coalesce. I also don’t want to jump to any long-distance options because that means rebooting all my health care – finding new doctors, starting over, getting new scripts. This is a bad time for that, what with the neurologist actually making progress. So staying here is unfortunately probably my best option.

What makes it hardest for me is that I feel that one of the reasons he felt he could do what he did is because in his head, I can’t leave. My partners are very concerned about me living alone, even if the option of a PCA were to manifest. There would still be no one there to help me should I need to go to the hospital in the middle of the night, or if I need help getting around my house, or if I fall. But that concern gives him an undeniable advantage.

Do I need him? Has my health progressed to a point where being single would be detrimental to my health? There’s definitely a part of me that feels if I really am facing the downslope of my life, the better choice might be to swallow his indiscretion in exchange for companionship as I walk this road. But that’s a want, not a need. What are my needs, in term of day-to-day living?

As of now, I spend most days alone. He goes to work, and I hang around working on the computer or watching streaming video. I make phone calls and write. I rarely go out and do things, as most of my friends also have day jobs. I go to doctor’s appointments, and it’s the exception rather than the rule that he takes time off to go with me. (He sometimes does so I can have a ride, and once in a while if the appointment carries weight, he’ll go.)

But I admit that I also put some stuff off until he comes home, so I can have his assistance. I usually need help to change the sheets on my bed, to retrieve items from upstairs, and go to the store. I like having one person who has walked the whole experience with me, that I can discuss new developments with, so together we can process and brainstorm and make decisions. Sometimes, he makes sure I eat (between the nausea and the pain, sometimes I won’t eat without coaxing). He massages my legs when they are painful.

Once everything was out in the open, I told myself that I had to prove to him that I didn’t need him just because I am disabled. I had someone else go out and get enough food that I could feed myself with the equipment I have in my room. I had them bring down clothes from upstairs and do a load of laundry. I made sure my meds were up to date. I got rides to all of my upcoming medical appointments. I wanted a semblance of independance, a feeling as though when this ends, I will be okay.

It’s been interesting. He comes home from work and we share an awkward conversation because he’s used to me asking him to do stuff, to bring home dinner, to talk about my doctor’s appointments, but instead I tell him I’m okay and leave it at that. He keeps reminding me that if there is anything he can do for me, he’s willing. When I finally asked him to run me a small favor, he took it very seriously – in a fucked up way, it felt like giving an addict a hit.

I know he has serious White Knight syndrome: he’s very attracted to people who have an obvious need in their lives. Almost all the people he’s dated (including *that* one) have been people who suffer from challenges he’s been able to help with in some way. Whether they have serious health issues, or are in neglectful relationships, or just need a confidante to talk about their lives with, it makes him feel valued and cherished to be that person for them. I see it as clear as day.

What I’m afraid of is that is all that’s left for us. That the reason he chose to deceive, rather than leave, me, is because of some odd sense of obligation. No one wants to be someone else’s obligation, least of all me. I keep telling him it’s about choice: I want him to choose to be here because it’s the best option in his mind. I want him to desire me, to be the first person he wants to share his thoughts and dreams with. I want him to want me for all the unique things that make me awesome; I do not want him to want things to work out because I’m disabled and need someone to take care of me.

I want a husband, not a PCA.

For now, I’m moving forward. I had a sleep study last night in hopes that a better CPAP setting (or a BiPAP, for that matter) may help relieve some of the brain-fog I have. Also, good night’s sleep helps my pain tremendously, and in the past few months my sleep quality has decreased significantly. And my neurologist is also a sleep specialist, and this was one of those things he insisted I do before we move forward. I have several appointments next week, including meeting with the GP about getting new STI tests. (Not something I’m particularly happy about, but in light of what’s happened, and it’s about time anyway…) I continue to think deeply about want vs. need, and what I need moving forward; both in terms of taking care of myself physically due to the challenges I have, as well as emotionally and romantically.

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