Hanging In There

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

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

“I’m hanging in there.”

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

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

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

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

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

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

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

Too Intimidating?

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

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

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

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

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

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

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

I’m sure you get my drift.

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

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

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The Magic Number

August 8, 2014 at 2:26 pm (Death and Dying, Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , )

Hey there, dear readers. Before I begin, I want to apologize. When I started this blog, one of the main reasons was so I could share information about my health in a timely manner from a centralized location – so I didn’t have to post to every single social medium and then answer comments from them as well – but this time I didn’t feel ready to blog about coming to Johns Hopkins ER or why I came in. I’m still not ready to write about all of it. But here is a little information, a little navel gazing, and a little update. -Del

A while ago, back in March, I started taking on some serious edemitous weight (what we non-medical types call “water weight”, “edema”, or “swelling”) – one doctor guestimated I had gained 50-70lbs of swelling (and he was pretty close to exactly right). I began seeing a long and complicated list of specialists, each of whom happily pointed to one another as the doctor who could help me tackle this once and for all. I was bounced from cardiologist to infectious disease to primary care to nephrology and around again. I got put on several different combinations of drugs, kept on using the pneumatics when I could, tried to limit my fluid intake, etc, etc, etc.

I will admit, I was feeling pretty defeated. Not only did each doctor think it was definitely a SEP (Someone Else’s Problem), but none of them treated it like a big deal. When I had to buy new shoes 3 sizes larger, I barely got a shrug. To me, my Non-Violet Beauregard impression felt like something pretty hazardous but even when doctors was using scary words like “organ failure” and “amputation” they did it with a resignation usually used about troublesome boys.

After all, the list of symptoms I had –

  • Extreme Fatigue
  • Shortness of Breath
  • Apparent Weight Gain (Swelling)
  • Lack of Appetite/Nausea
  • Sleep Disturbance

- could all (and were) attributed to being obese/sedentary. When I showed my primary doc that I was losing my breath just from standing up and buttoning my pants, we had a ten minute conversation/debate; she was forceful with her opinion that I was decompensating. (Basically, the opposite of ‘getting in shape’.) I kept arguing that even if I was truly decompensating, I was pretty sure it wouldn’t happen that fast and that dramatically.

But all along, everything that popped up she immediately tried to relate to my weight. In fact, when I came back to her after getting the diagnosis “Volume Overload” (Totally my Del Tashlin cover band), she weighed me to confirm that I’ve had a radical weight change – 60ish pounds in 3 months.

But to me, that wasn’t the shock. It was the magic number. I think we all have one. It may not be the same statistic, but there’s a number somewhere in your life that fits the category.

  • “If I ever have to buy my pants at Lane Bryant, just shoot me.” (number implied)
  • The day my scale says 300lbs is the day I lose my shit.”
  • “When I can no longer buy clothes at the mall because I am too big/short/tall/etc, I will have to kill myself.”
  • My cousin’s bra size is a 44G. I’d rob a bank to get a reduction before I would live like that.

There I am, standing on the scale looking at the highest weight I’ve ever been. I’m not seeing the magic number, but I’m very close to it. I take a deep breath and start reminding myself that it is edematous weight, swelling, something that will go away once they figure out what is causing it. Maybe a few tears roll down the side of my face, because it’s a number I wasn’t ready for that day.

As we go back into the exam room, my doc makes a comment about possibly revisiting the weight loss surgery conversation. Anyone who has followed my story from the beginning can probably guess how that conversation went. She’s trying to assure me that just because I had ONE bad experience with ONE doctor should not mean I reject the possibility forever. I am trying to clarify to her that this weight is not “Del ate some extra cheetos and skipped aqua aerobics” weight, but “something is physically wrong with Del that is causing water retention at a ridiculous level”.

I left the appointment feeling pretty sure that my GP wasn’t going to be any further help in this situation. Once again, I’m thinking I might have to go looking for someone new – especially in light of what has happened. In the most obvious application of the metaphor, I came to her with a list of symptoms of a serious medical problem of immediate need of treatment, and what she saw was a fat, lazy person who wasn’t taking care of themselves.

I got so disheartened, I stopped giving a shit. I still took my meds and the like, but I stopped making doctor’s appointments. I lost my fire. Inside I knew that something serious was going on, but it was as if I ran around the village telling everyone the Monsters are Coming and the village reacted with affected apathy. It wasn’t until Rave and I noticed that the swelling was getting markedly worse, and now was happening faster than before, that we decided something had to be done.

Now I am inpatient at Johns Hopkins and I know for certain what all my symptoms were caused by and what the short term plans are to get me going home, at the very least. As I discussed things with Winter last night, he asked me what he and the Clan could do to support me in this time, and I paraphrase for you, dear reader, as well:

I feel like I need some time to wander in the dark, bump into the walls, wack my toe on the moulding. I need permission to let this filter in slowly, rather than jump to branding it on social media for the 140 characters times worth of edification faded into the next cute cat meme. I don’t want to have to educate each and every person I talk to about what it is, how I got it, and how we’re treating it. I just want to sit with this for a while, think about it, run my fingers around the edges and see if there’s a contingency envelope hidden somewhere.

When I’m ready, I will share everything on the blog and you will all know what’s going on. Until then, for now, it’s just mine to feel in all the ways I want to feel it.

(And the good news is, I’ve already lost 15 lbs away from the magic number, so that’s reassuring.)

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Still Not Dead

June 26, 2014 at 11:12 pm (Death and Dying, Living With Chronic Illness, Medical, The Journey Towards Diagnosis) (, , , , , , )

I think I’ve told this story before: when I called my mom, I would always start by saying “I’m not dead!” This was because once she chastised me for waiting too long in between calls and it left her worrying I might have died. In fact, she would often leave messages for me that would said, “I just want to know you’re not dead!” It was a playful thing between us, because of our shared dark humor about living with chronic illness.

I say this to you because it’s been a while since I’ve posted anything on either blog. One would hope that means that there’s nothing to write about, but in fact the opposite is true. Things have been both busy and difficult in my life as of late, and I’ve had so much on my plate “writing a blog post” almost seemed like a frivolous endeavor.

It is made more complex with a new neurological symptom I’ve gained. For years, I’ve suffered from a very soft form of aphasia – basically, I can look at a cup, and know it is a cup, and can describe what a cup does, but I can’t say the word “cup”. It’s like someone has temporarily erased it from my memory. Now I find myself misspelling simple words over and over again (It took me three tries to get ‘misspelling’ right!) until I give up and use spell check. If you’ve seen me type, you know that I type super fast – 110 WPM, last measured – and I rarely get hung up by a word like that. And the words that catch me aren’t super difficult ones to spell – I spent 10 minutes on “column” the other day, writing “collum” over and over again. Needless to say, that makes it hard to write.

The big news about my health situation is my kidneys. As I shared earlier, I gained a large amount of water weight in a very short amount of time. I’ve been on several different diuretics, and use a pneumatic pump on my legs for 4-6 hours a day to push the fluid from my legs back into the core circulatory system. I’ve had to buy new shoes because my feet are swollen enough that my normal ones don’t fit. I have to be careful about my fluid intake – too much and I swell more, too little and I get dehydrated fast. It is really annoying and nothing seems to help.

It seems we’ve narrowed it down to where it’s very likely my kidneys. Not only am I dumping a lot of protein in my urine (symptom of kidney problems), but I’ve had flank pain that gets worse when I am dehydrated. I’ve seen a nephrologist and right now he has me getting blood and urine tests every week to see what needs to be done to get me on track.

There are also a host of other symptoms that cropped up, and we are trying to figure out what is related to what. I am having night sweats, insomnia, incredible fatigue (not just being tired because I can’t sleep at night, but being too tired to do anything and running out of energy just from sitting around and talking to people). My gait has suffered and even just walking around the house can be difficult.

There are also a host of things going on in my life that cannot be pushed back or avoided. My soon-to-be-ex-husband wants to change our separation agreement in ways that require me to have legal representation (ie, because I don’t agree with his proposal), but I can’t afford a lawyer and, sadly, my magical rolodex has yet to rustle up a family lawyer willing to take me on pro-bono. As separation agreements that don’t involve child custody are seen as very low priority, organizations like Legal Aid don’t cover them. So I have been applying to various charity organizations while simultaneously trying to prepare myself to represent myself pro se. I would rather eat rusty nails than do that, so I’m putting a lot of time into finding alternatives. There is also a lot of drama from that sector, and that’s all I’m going to say about that.

I also had a friend die from pancreatic cancer, only two months after being diagnosed. I spent time with him both as a friend and as a death shaman, and in the end I hope I was useful in helping him prepare to transition. I was there the night he died, and I did what I could to guide him to his next adventure. It was difficult for many reasons, and he was so treasured by his friends that the hospice actually thought he might be some kind of local celebrity. I think about him often. (I am planning to write an essay just about this, but I am not ready yet.)

It still feels like yesterday that my Mom died, and I’m still trying to tie up lose ends with my maternal family. I can’t seem to communicate with them clearly, no matter how hard I try. I had hoped that maybe my Mom’s death would help me reconcile with them, because I never met anyone from my father’s side, so they are all I have when it comes to blood-relations. But if things keep going the way they’re going, I may have to accept that my mother was the person who kept me connected to them, and with her gone there’s nothing left. I don’t know.

It’s funny, I started this post wanting to write about something very specific. I tried to post about it to FB this afternoon and my keyboard kept “accidentally” erasing it. And now I just don’t feel like I’m ready to write about it in any detail, so instead you get this. But it’s better than nothing, I guess.

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Ten Hard Lessons I’ve Learned About Being Chronically Ill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1. Do whatever you have to do to survive. 

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

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

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Contemplation and Dedication

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But for now…

Hail Hel, Lady of Mercy and Patience.

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

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

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

Hail Hel, Entropic Transformation.

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It’s Not About the People, Lesson 1

November 18, 2013 at 1:17 am (Death and Dying, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , )

This post has been brewing in my brain all year. I guess I was sort of waiting for a specific moment of inspiration or insight to commit it to an essay, but since my task was to contemplate what it means, not figure out what it means (both for me and in general), I’m going to share some places my year-long project for Hel has taken me.

This simple statement – It’s Not About the People – has been one hell of a koan-like puzzle for me. And merely sitting with my confusion, rather than trying to find my way out, taught me the first of many lessons that I have since tried to apply to my life.

Lesson One: Your Job is not to make people happy, or tell them what they want to hear, or do things for them so that they will like you.

I will admit, I am a people pleaser. Growing up, I compensated for my lack of charisma and attraction by being the friend who makes you happy. If you need to laugh, I have funny jokes and stories. If you need someone to help you move, I was there and brought three friends. If you need a rare-edition book for your master’s thesis, I will devote time and energy to find it. Nowadays, I joke about my “magickal rolodex” being my superpower, in that I know such a diverse number of people who also have a wide range of skills, collections, and interests, that no matter what you might need in your life, I probably know someone who has it or can help you do it or someone who will do it for you.

But these things carry a price, something that I have to stop ignoring and come to terms with. As I am losing mobility, having fewer and fewer good spoon days, and my resources are dwindling, I just cannot afford to be all things to all people. Sometimes I can’t even afford to be one thing to the right person – looking at some of my recently failed relationships, it’s obvious to me that there were parts where I just didn’t show up and engage enough. And I’m not deluding myself into thinking that it’s all related to my physical health – I’ve been pretty depressed this year and sometimes my ability to engage with others was extremely limited because of my depression. I am taking steps to at least face how bad my depression has gotten, but right now I don’t see an immediate burst of sunshine on the horizon. My counselor reminds me that sometimes the true observation is “Things fucking suck right now.”

As I explored this facet of the koan, I really began in earnest to think about and enact some much-needed boundaries in my life. There were definitely areas that were sapping my resources fast and dirty, and it will not surprise you that most of those areas reacted with the biggest and more painful responses when I tried to stifle the flow a little. There were some people/places/things that had come to expect me to jump when they called, to never ask for compensation for my time and efforts (and in some cases, even refusing to reimburse me for monetary investments). It has cost me at least one friendship, which broke my heart. But at the same time, it gave me an intense sense of clarity as to how some people define what it means to be a friend – that for some, if you’re not actively adding benefit to their life in a tangible way, you’re not worth a phone call or email once in a while.

I also had to turn this part inside out, and I will admit that I am still a work in progress on this. I had to look at how I deal with the vast amount of relationships (not just romantic/sexual, but all different kinds) I consider important and detail to myself what levels of effort these relationships need. The obvious example is my relationship with email – I have a reputation of never answering my email, or not answering it in a timely fashion. I tend to hide behind physical excuses, although they are sometimes legitimate, about my inability to sit and type for long periods of time. (I have tried dictation, but it doesn’t work as well for reasons that I won’t get into.) But I’d be a big fat liar if I said that was the only, or even the most common reason why I don’t respond to emails, return phone calls, or other forms of communication. I did a lot of meditating on the whys and wherefores about this, and two flaws I have decided to work on. One is feeling overwhelmed too easily. It would be embarrassing for me to admit how small a day’s itinerary can be before I throw my hands up and freak out. Like most people, I have days when I am more or less productive, but the days I am less productive have become to far outweigh the more productive ones.

Part of that is a honest coming to terms with how much actual energy I have on an average day. Although most people have days where they plan much more than they can actually accomplish, that has become almost a daily occurence for me. I’m either wildly optimistic about how much I can do, or I’m overly pessimistic and do very little. The problem becomes that there are rarely days where I land somewhere in the middle – once I fail to accomplish one or two tasks, I throw in the towel and spend the rest of the day goofing off. It also has the effect of beating myself up over stuff I failed to accomplish, as well as a slowly increasing backlog that becomes really overwhelming (vs. my anxiety driven feelings of overwhelm, which may or may not relate to the actual amount of stuff I’m supposed to be doing).

This leaves me in a pretty obvious quandry: If I make “make people happy” or it’s corollary, “Do things so people will like you”, my first priority; but I am coming to stark terms about exactly how much I can expect to accomplish on a regular basis – something has to give. And although in a dream world the solution would be to find the power-up magic pills in my real-life video game and suddenly have more stamina/less pain; the harsh reality in my real-life documentary is that I can’t always make people happy if their happiness is contingent on me keeping up with correspondence or doing other forms of work (especially for free – but that’s less about money and more about reciprocity).

Hel comes to remind me, or maybe just school me, that my first and most important priority is serving the Gods, and the work that They ask of me. So learning how to create better boundaries and knowing my limitations when it comes to “the people”, helps me be a better shaman and God-employee because They get my best. Many, if not all, the people in my life give lip service to understanding this, but I can probably count on fingers how many really grok how that has transformed my life. It has been difficult, because obviously what I would like to do with my life and my time is sometimes at direct odds with what They want from me. And in some cases, I have been tasked with doing the same thing over and over again until something happens (that is outside my control), and it feels downright wrong to spend time on something that has a high chance of being shoved back in my face, rather than spend time answering email and being social. But this is only one of the harsh realities of the price I paid to live in December, that although I had already forfeited my Will to Loki, that the deal with Hel included forfeiting most of my Life. This is compounded by the other, less obvious “benefit” that I have several Divine Bosses, and even a few that just Boss Me Around, and the tangible web/chains of the many oaths and Relationships I have developed over time has made me very circumspect about my own cavalier attitude I once held about accepting the offer of Whatever God Showed Interest, rather than really sitting and figuring out if I had the time and energy I would be asked for.

In short, I started acting with the Gods the way I acted with my schoolmates when I was in Junior High School. I didn’t care if you were a Jock, a Prep, a Freak, a Stoner, a Bad Kid – if you showed me the least amount of attention, I would do almost anything you asked as long as you continued to be my friend. I mean, I had more than one person say, to my face, that they really liked being my friend but they didn’t want the people at school to know (because then they would become secondary targets to the teasing/torture I got on a regular basis), and made me agree to keep our friendship a secret. I am not quite so desperate when it comes to Gods, but I know people who have been, and continue to be so. They are just so happy that Someone, Anyone is paying them attention, that they don’t really think through what the consequences might be. Loki may be showing you some attention, but don’t come crying to me if your life gets completely upended and you can’t seem to make heads or tails of anything anymore – invite a God of Eternal Change into you life, you get exactly what’s on the tin. Odin may propose marriage to you, which sounds romantic and important and satisfying, until you learn that He wants you to abstain from human relationships, or decides that you should quit your only-means-of-financial-support job and travel around the country helping the homeless and doing ritual for Him. There are lots of stories like this, and they tend to be the stories that you don’t find on the Internet – they are the ones told around campfires, or after rituals, or during pastoral care sessions.

This is where lesson 1 bleeds into lesson 2, so I will let you know what lesson 2 is as foreshadowing for my next essay:

Being a shaman means that you work for the Gods, not for your clients.

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How Do You Mourn?

October 31, 2013 at 2:23 am (Death and Dying, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , )

I read an article today about a photo-Tumblr that is solely comprised of “selfies”- pictures one takes onesself, “duckface” optional  – at funerals. Some of the images even had the dearly departed in the background. The author of the article used this to make the point that we, as a society, no longer learn how to mourn.

Historically, when a person died, they were kept in the house for a few days so people could come by, pay their respects, and mourn with the family. Death was a tangible thing, and in some cultures families or other groups of people (not professionals) would wash and dress the corpse in preparation for burial. Then, the funeral services became a thing, and once Aunt Tilly dies, she is whisked away to a mystical place where they make her look as alive as possible (if you have a viewing), or put her in a container where you don’t have to see her dead body.

On top of this, most families are wishy-washy as to how to explain death to children. There’s this express notion that you shouldn’t upset them, which seems a little odd to me. Losing a loved one is inherently upsetting, and eventually that kid is going to grow up and realize that Grandpa isn’t off having a very long nap, or is on the longest Disney vacation ever. We are so afraid of the mysteries of death and afraid of not knowing the answers to what children may ask about what happens after death.

But the predictable thing that happens after death is mourning. Even if the person who died isn’t someone you were personally close to, knowing that person won’t ever make another movie or write another book or show up at Christmas dinner ever again is a sad thing. You’ve invested some amount of energy into that relationship, whether it’s your father or your favorite musician. Knowing that you have to move forward in the story of life without the unique contributions that person, that relationship brought to your life and the lives of those around you can be a hard thing to face. Of course, on top of that, it calls into question our beliefs about what happens after death – whether you believe they’re just a decaying food source for the earth or drinking flagons of mead in Valhalla – I know that every time something ends, I wonder what happens to the entity that was.

This goes even further into our every day lives, because it’s not just people we love who stop existing in the form we’re most accustomed to. You might lose a job you legitimately loved, or have to leave the town you grew up in, or decide that your relationship is no longer working and needs to end. Perhaps these things, too, have some sort of afterlife? Maybe you start to collect photographs of your hometown, or write emails to former co-workers, or in some other way try to keep some energetic tie ennervated even though it isn’t as direct as it once was. I know that every so often, I google ex lovers just to see what they’re doing with their lives, what happened to them after they were a significant part of my life. I notice if they’re still listening to that band I introduced them to, or have kept the hairstyle I told them was sexy. I like to know that I’ve had an affect on them, even though our connection is severed or different than it was.

But when things, people, places, situations, come to an end, often we have no idea what we’re “supposed” to do. We feel confused and lonely – and that’s unfortunate. My family, being both Irish and WASP-ish, was one where you did not engage in big shows of emotion outside of the family house. No matter what was going on in life, once you walked out the door you were happy, healthy, and well-adjusted. So when we rushed to the hospital because Mom was sick, or when my father sat us down and blamed each one of us individually for why he was leaving (even though he came back about 5 hours later), I was taught that you didn’t discuss this to outsiders. Eventually, an exception was made for therapists, and maybe pastors, but that’s about as far as it went.

So personally, I never really learned how to mourn. There were no rituals or ceremonies that gave us free space to truly feel and express our emotions – maybe a tear or two at a funeral, but everyone looked askance if you started to sob – and if you chose to redirect your sense of loss by being sullen, difficult, rebellious, or detached, that was grounds for punishment. In the end, I was shown the only response to loss is to bottle it up and wait until you saw your therapist.

It’s only been the last few years that I’ve really started thinking, writing, and talking about emotional catharsis around mourning. I’ve had clients and friends come to me after someone they love has died, feeling lost and confused because they feel like they should do something, but they don’t know what. Sometimes, or especially, it’s after the funeral is over and they’ve had a few days to really think and feel and process, and by then you feel like you lost your chance because that’s what the ritual was supposed to be for. When my father died, I did the majority of the planning and execution for his funeral, so for me, it was difficult to dig deep and really figure out what I was feeling and what I wanted to do with those feelings, because I was busy finding the right music and figuring out where the funeral would take place and writing programs and delivering my eulogy.  It wasn’t until months later that I realized I had truly shut off any sort of emotional response to his passing, and I found myself feeling guilty for not “doing more” to memorialize him, and to process the complex emotions that I was having.

This is one of the reasons Samhain is one of my favorite Pagan holidays. It is a time and place where people are encouraged to truly mourn their dead, in whatever way feels right, and allow themselves to have whatever emotional response they need. And there’s no rule that says you can’t mourn your dead every Samhain – you don’t just have to do it the year they die, you can do it as long as you want, as long as you think you need, for decades if need be – in fact, that’s the way the holiday is set up. You don’t have to bury your loved one once and then move on in life; you can ritualize their passing, and the grief associated with that passing, for as long as you need to.

Another way I have incorporated open expressions of mourning into my life is by volunteering to mourn for others. When a friend or family member suffers a loss, I usually offer to mourn for them when I do my Rituals of the Dead. My “death altar” has items, pictures, tokens, and the like of friend’s fathers, mothers, high school buddies, as well as some from people I’ve personally known. And when I am feeling overwhelmed with sadness, as I do sometimes while dealing with depression, I put on all black and take out all the tokens and cry. I say their names, if I know them, and I hold their tokens close to my heart and just let out unadulterated grief. I figure if I’m going to suffer from uncontrollable crying jags due to depression, I might as well put them to good use.

I also build little mini-altars for my dead, by first burning a seven day candle until it is completely evaporated, usually lit as soon as I hear of their passing (or if they are very close to death and all indications say that’s what will happen). When the glass container is empty, I gather small items that make me think of them – a ticket stub from a movie we saw, a drawing of a brand I gave them, poems that make me think of them, etc – and fill the glass. I’ll also use “traditional” things, like rue, dried rose petals, lavender, fall leaves, and anything else that’s somehow connected with the death/decay/mourning part of the cycle. Sometimes I leave these at the gravesite, or I bury them somewhere appropriate, or give them to someone who is suffering and might find comfort with it. And sometimes I leave them on my altar, a way to create and maintain a connection with them (either symbolically or energetically).

What’s great about these things is that they don’t require you to have any one singular belief about the afterlife. This is not what these rituals and symbols are about. You can still write your loved ones letters after they have passed and still believe that they are mere wormfood. Or you can rest in your certainty that you have no friggin’ clue what happens to us after we die, and burn a candle in someone’s honor. These things are about you, your grief, your loss, what you need to do to allow yourself a significant moment to fully embody and express what this feels like to you. They don’t even have to look like traditional funeral tropes – if your friend was a drag queen, you can get dressed up and dance to Queen, go to a local drag bar and tip the queen that you think they’d be most impressed by, or maybe even get your ass on stage and do a drag number dedicated to your friend.

You can also use these things to help when the thing that passed was not a person. When my marriage ended, I found a piece of jewelry that was handmade for our wedding, and I placed in on the “death altar” while I spoke aloud about the end of my marriage, the death of the dreams I had when we got married, and the death of myself as his spouse. When I leave a house I have bonded with, I usually keep a token (most often a key, as I like keys) and when I feel nostalgic or sad that part of life is over, I’ll take it out and let it direct my memory fugue. Heck, there are still girl clothes I own that I can’t get rid of, because they’re too sentimental to me, even though I’ll likely never wear them again.

Samhain can be a time for these kinds of grief, too. It is the symbolic end of the agricultural cycle, where the crops have been harvested and now the plant matter left over is used to seed and fertilize the soil for next year’s harvest. We get ready for the dark of the winter by recognizing that which has served its purpose and needs to metamorphose into whatever’s next for you. You can use this symbolism to quit a bad habit, end a hurtful situation, let a part of you go that no longer serves you, recognize who you used to be and prepare for who you are to become. You can take a moment and allow the sadness of all the changes that have happened in the last year (or whenever) to flow out of you, in hopes that when you are ready to meet new and different experiences, you can draw from these memories without feeling the pain and loss. You can make Grandma Jo’s apple pie for your friends without sobbing through every bite. You can tell funny stories about when you used to work a corporate job, or when you used to be a girl, or when you used to only date boys. This is a great crucible to allow embarrassing, sad, hurtful, frustrating, and hellishly difficult situations become fodder for those stories that are only funny in retrospect. Or maybe use it as a story line for your novel, or inspiration for your next play, or to create a new RPG character.

So this is what I leave you with this Samhain: it’s okay to grieve. It’s okay to not know how to mourn, and to just open yourself up in a place you feel safe to do so, and sit with your feelings. Express them. Find rituals and symbols that facilitate this unburdening. Tell funny stories about your dead. Get rip roaringly drunk on your granddad’s favorite whisky. Go to the restaurant where you had your first date with your ex, and order the same thing you did then. Cry in public. Go visit a cemetery, find the oldest grave, and leave them an offering. You don’t need anyone’s permission to feel whatever the hell you feel about people and things and situations that are no longer part of your life. It’s also okay not to feel sad about these things – maybe your parent was abusive, and with their passing you have a better sense of safety and support. Maybe that job was holding you back from starting your own business, or living in a state you’d prefer. Mourning doesn’t always have to be all black lace and tissues – sometimes it’s a selfie taken in the funeral home’s bathroom.

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Home

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

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

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

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

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

~”Home”, The Wiz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Am I Lying?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Surgery Tomorrow

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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