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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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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What about it?

February 18, 2013 at 4:03 pm (Chronic Pain, Disability, Living With Chronic Illness) (, , , , , , , , , , , , , , , )

“What about Dying for a Diagnosis?” Winter asks, in that way good friends, or sometimes shamans, ask someone about something they’ve been overlooking for longer than they should have.

“I know, I know…I just don’t know what to say. ‘Things are going the way you’d expect’ doesn’t make for an interesting blog post,” I reply.

I’ve made several fairly popular and viral posts over at Sex, Gods, and Rock Stars lately, and have three or four posts sitting in my word processing program, unfinished. (I tend to jot down ideas as they come to me and then develop them in small segments until I reach a stride in my writing and finish a post. Sometimes, either possessed with a strong opinion or a timely matter, I will conceive and write an entire essay on the same day, but most of the time I work in starts and stops as spoons allow.) But none of them are for here; and there are more reasons than merely not having anything earth-shattering to say about my current roost in my medical journey.

And it’s not untrue: things have slowed down incredibly since the surgery. I assume weekly posts that entail mostly of “I’m still healing, still dealing with post-op pain, and the doctor visits have been pretty routine.” Other than one of the surgical drains developing a crack and having to be removed at home (by me, not knowing that there was a significant amount of tubing inside my body – I just knew that the drain was no longer holding suction (which is how it works) and the stitch had blown, so it was going to fall out eventually anyway) and a bit of swelling around the center of my scar that I plan on having checked out by the surgeon’s office sometime in the next week or two, there hasn’t been a lot of dramatic action in our hero’s story.

It’s also not entirely true, either. My chronic pain has shot through the roof, with more days finding me in bed doing the bare minimum I need to get through the day than days where I spontaneously decide to do something like catch a movie or go out on an errand. I was also doing something I call “spoon banking”, where when I have a commitment coming up that will require much more energy than normal, I will spend the week(s) leading up to it getting extra rest and being judicious about what I really need to do, in the theory that if I don’t use the energy now on less important things, I will have (a little?) extra when the time comes. I attended my first teaching gig/event in six months this past weekend, and I think that the practice paid off, as it really wasn’t until Sunday evening when I started “feeling it”.

It was good to get out like that. Not just because it was an important personal step in healing from the separation, but because too much introversion makes Dels depressed, and depression comes with its own tangible consequences in levels of pain, sleep disturbances, and mental health symptoms that only muddy the waters in terms of figuring out what the heck is wrong with me. It wasn’t easy, as it was one of those events where I felt like I was running from one thing to another, rather than leisurely enjoying my first large-scale test of my constitution by giving myself liberal amounts of rest between commitments. It’s a side-effect of being one of the programming director’s right hand men as well as his roommate; should something come up where he needed someone with skills I possessed to fill in, it’s hard not to turn to your lovers and say, “Um, hun, is there any way you could…” Of course, this is not how Winter tends to ask me to do stuff: it’s more like, “Dammit! I still can’t find someone to invoke Water or Fire at opening ritual! And it’s in two hours! What am I going to do?” And like most decent people, if there’s anything I can do to ease his stress and make him feel good, I’ll do it. So my “workload” at the event shimmied up from teaching two classes, to three, to also helping produce a ritual, to being in a second ritual, to judging a contest, to helping him find other people to fill in where I couldn’t, and so on.

But this entry is not about that. It’s about my avoiding this blog, and knowing damn well that Baphy only let me start Sex, Gods, and Rock Stars if I promised not to forget that this was my first and most important commitment. It doesn’t help that I was offered a book deal last week, a collection of some of my more spiritual blog entries, and when I submitted links from both SGRS and Dying for a Diagnosis, most of the DfaD essays were relegated to the category of “Cool Things Del Has Written”, which was to say “Not Really Meant for This Book”. Now, I’ll say that the publisher has offered me a few options, including providing formatting services should I want to put out a collection of blog entries that fit this category (but not carrying it under their watermark), and I find myself once again feeling like I may be neglecting this blog, not just in the writing sense, but also in the sense of it being considered part of my voice on the Internet (and beyond, when/if the book(s) come to manifest.

It’s also true that when I was praying about whether or not I should (or could) start the second blog, I bargained that whereas reading about my frustrations with the health care machine and/or my funeral arrangements and/or the spiritual revelations being chronically ill has given me weren’t exactly going to get me international stardom (or many blog subscribers – I had always assumed that the majority of DfaD’s readership was made up of people who already knew me, plus a smattering of other spiritual folk suffering from chronic conditions who found solace in what I had to say on the subject), SGRS was much more in my personal wheelhouse. I already have a reputation and/or following from my vocation as a kink and spirituality educator, as well as a shaman and spirit worker, and the bargain included the idea that once people found SGRS, they might wander over here to see what else I was writing. And sometimes that’s true; but I definitely have twice as many subscribers on SGRS than here. When a new post goes live here, I get something like 150 people clicking links on social media to see what’s up; on SGRS, it’s almost double that.

It’s not surprising; there are many more people interested in, well, sex, Gods, and rock stars than they are about death and dying. This blog is much more personal, and so it may not be of interest to those who don’t know me personally. But it doesn’t help when I use my essay-writing spoons on developing things for SGRS and only waiting until something major (good or bad) happens in my life to blurt out something on DfaD. I could very well be doing more research, thinking, and praying about the spirituality of illness, pain, death, and dying; which would, in turn, inspire me to write more essays here that aren’t so reliant on knowing the particulars of my medical situation or my history with terrible surgeons/lazy doctors/pain management techniques/etc. In fact, I felt bad when I saw that a small handful of people, upon seeing that I had a new blog with much snazzier and less agonizing essays on it, unsubscribed from reading this one in favor of the other. I’ve also seen a decline in how many people bother to click on a social media link to read what’s here, whereas more of them are inspired to give me a few moments of their Internet browsing time when I’m writing about spirit work or devotional practices.

It doesn’t erase the fact that I still don’t have a diagnosis, after almost eight years of suffering. That one of my primary spiritual identities is that of the Dying Man, the person who speaks for those who are much more aware of the limited time we have on this planet, and the messages we desperately wish those who patently ignore this impending deadline (ha! pun!) would pay attention to. I’ve had “The Five Top Regrets of the Dying” essay a friend emailed to me sitting in my bookmarks for probably a month now, meaning to write something about it for DfaD, but instead I’ve been spoonbanking to go to a spiritual kink event and enjoying the blush of a book deal.

What it does, is it lets me feel like there’s more to me than this. It’s something I’ve written and spoken about quite a lot; this fear that what I leave behind will only be linked to the fact that I’m chronically ill, when in fact I’m a much more multifaceted and vivacious person who just so happens to also be chronically ill. It lets me taste this feeling of being a rock star, even while I’m being pushed around in a wheelchair and sleeping rather than partying late into the night/early into the morning. It comforts me, and those around me, to know that all the information and experiences in my head will be passed on to the next generation, so they won’t find themselves having to rebuild a modern form of shamanism/ordeal mastery/spirit work/ritual creation/etc from the shreds of those who were too sick to take a moment and write it all down. One of my mentors and friends, Raven Kaldera, churns out book after book, not taking any time to promote one or the other for very long, because he too feels this need of getting all the information/experiences out there before his chronic illness takes him (or, since we both believe in the concept of being able to communicate after death, at least makes it harder for us to get the point across).

So here’s the skinny on what’s going on with me medically: I have noticed that I am losing weight at a scary rate again; not only the 40lb weight loss I had on Dec 28th, but more than that. And yes, I’ve gotten my handful of “you look great” compliments, and it’s hard to sift which ones mean “You look really good for someone who had major surgery a month ago” from those that are really saying “You look thinner, and thinner for you always means healthier, right?” I’m still wearing supportive garments over the surgical area, although now I do it more when I’m going to be super active or if my abdomen hurts, rather than every day. There’s a growing swelling around the center of my abdomen that is causing the scar to heal inverted (dipping inward rather than keloiding), and I’m going to see Dr. Sacks about that sometime very soon.

My chronic pain has been a devil to me, and my muscles have been locking up, misbehaving, or cramping painfully much more often than they did prior to surgery. My pain doctor was…I was going to say “less than thrilled”, but it was much more like “really pissed off”…at the drug combination I was given by Johns Hopkins (although I did mention that JH tried to contact his office many, many times, both to get his consult on what to give me, as well as to secure that it was okay to release me on that combo, to no avail). And it’s not helping as much as you’d think. I mean, it is helping with the surgical pain for the most part, but my chronic pain eclipses it. I’m very worried, because there are three tiers of pain management – think of it this way: there is “have some occasional Vicodin for when things get really bad, but mostly rely on NSAIDs to get through it”, there is “okay, here is some OxyContin, and have this other narcotic when things get really bad” (which is where I’m currently at), and then there’s “We need to start talking about permanent pain management options, like implants or lifelong narcotic plans”.  Basically, I’m at the place where if I get anything stronger to help with my pain, it will be considered going from tier 2 to tier 3, and there’s nothing above that. So if I accept going to tier 3 now, if things get worse as I age, or if I grow a tolerance to the tier 3 treatments, there’s nowhere else to turn but learning to accept a very painful reality. So there’s really nothing he can do to help manage it, except offer up lifestyle changes.

I am looking into getting a mobility scooter (y’know, rather than a Vespa) in hopes that by the summertime, where I do a lot of events at a local campground, I will be able to get around independently rather having to rely on golf carts to get around. (Renting a golf cart just for my own purposes is rather expensive, even just for a weekend, and hoping that one that is being used as the camp-wide “taxi” will get me around in a timely manner has been..less than optimal, as a teacher/presenter/busy person. There are also places a golf cart isn’t allowed to go, that I’m hoping I may be able to access on a personal scooter.) It will also mean that I won’t need someone to push me around unless wherever I’m going makes bringing a scooter with me impractical or impossible. This weekend really drove home how dependent I am when I’m using a manual wheelchair I can’t self-propel; twice I was trapped in my hotel room because the person I relied on to get me around was unable to do so. It wasn’t their fault – in one case, poor Rave had been running herself ragged and really just needed a nap, which was completely reasonable – but it is a somewhat terrifying feeling when you really want to go somewhere but you can’t do it because no one can help you. Having a scooter would make both the camping events easier, as well as the hotel ones, as the model I’m looking at is built to handle both. I just need to hope my insurance will cover it – which it probably will – and I can get it settled in time.

I’m also thinking about alternative forms of pain management, but it’s hard. I really feel that acupuncture didn’t help, and the therapist I was seeing is someone in whom I have full faith in their abilities. I’ve been told that sometimes you need to shop around to different “schools” of acupuncture (there are several different techniques), and maybe a different one would be more useful. I’d give my left arm to find a massage therapist, but as I’ve said earlier, current none will treat me because of the infection issues. (Which I still find incredible on a long-view basis – since all the ones I spoke to, I told I would just have to rely on amateurs who were willing to rub my muscles, and who wanted to learn better techniques so they could help, and they were fine with that, but they weren’t willing to work with me professionally – but I totally get it from a smaller-view, as it was a ‘cover your ass’ move on their part.) I’ve been working on learning some basic stretching exercises, and moving around a little bit each day with intent, in hopes that maybe something like chair-yoga or chi-gong might be useful in loosing up my spastic muscles. It’s just difficult because I’ve tried so many of these ideas before, in a variety of ways, and they’ve never done more than given me a few hours relief, if that.

Okay, I’m out of blogging spoons now. I’m half-slumped over and my hips hurt from sitting upright. But there, Winter and Baphy, I’ve written a Dying for a Diagnosis post. Now let’s just see if I can keep finding interesting things to say.

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Remote Support for the Surgery, Part 1

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

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

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

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

This is what she writes:

Restoring The Temple

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

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

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

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

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

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

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

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

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

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

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

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

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

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3am

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

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

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

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

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Reality and Fear: Being Disabled and Separated

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

 

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

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When I Die: Two Services

June 11, 2012 at 1:30 pm (Death and Dying, Spiritual, When I Die) (, , , , , , , , , , , )

As I have been involved in the planning of two separate services for my friend’s death, it made me think about what I would want. My friend actually got three; one for just his family and close family friends, one that was open to anyone who wanted to come, and one for his religious contemporaries.

Since Ninja and I had a “Renaissance wedding” in order to hide the more pagan elements from my in-laws, I get why there might need to be a few different celebrations of life.

I am making it clear that I want 2, and only 2, services; I want a proper funeral, and I want a celebration of life. Anyone and everyone can self-select as to which ones they attend, but they should go to either being ready to face whatever they may learn about me from those who attend.

The funeral will be a somber affair. Its primary goal is to give people who are grieving my death a place to gather and support each other. It will happen shortly after I die, basically as soon as my ashes are obtained. I’d like it to be in a sacred indoor location, but no appropriate ones spring to mind. Someone’s house would also do. It should be officiated by Hugh Eckert, Wintersong Tashlin, and Raven Kaldera. I know they’ve never worked together before, but I’m sure they’ll come up with something appropriate. It should be in line with my religious and spiritual beliefs – don’t make my in-laws smother on the Paganism, but don’t hide it either.  (I figure at that point I’m already dead and therefore what does it matter anymore?) It should be family appropriate and solemn. Ninja’s religious views should also be taken into consideration, and if he feels strongly that he would like a rabbi involved, I say do it. After all, the funeral is more for the living than the dead. I’m sure we can find a rabbi who can work with Hugh, Winter, and Raven.

The second service should be a celebration of life. This will be more for those who wish to memorialize me through story and song, who want to recount the crazy adventures I’ve had through this life. There should be alcohol in horns being passed around and bawdy stories of how great I was in bed told. No holes barred. People should be warned that if they’re uncomfortable with any aspect of my life – my trans identity, my Invisible People, my kinky sex life, my poly partners – they should stay the fuck home. This is me in full technicolor, for all to celebrate and bask in. I want the movies I made playing in the background. I want Raven to sing Skullcrusher Mountain. Nick Nigro has to be there, and has to tell at least one crazy Del story. There should be a division of my sex/kink toys – maybe even a raffle to donate to a charity I would have liked. I’d want this to be in an outdoor location where day turns to night and frivolity turns into drunken, tired people surrounding a campfire pouring libations to me into the fire. If it’s appropriate, I’d love it if it were at either Cauldron Farm or at Ramblewood. This celebration should be officiated by Elizabeth Vongsivith (whose last name I can never spell right), and she should wear her Fools dress. She knows which one. Also starring Rebecca Proch, for which the only funeral I can imagine her officiating. She will decorate it to the nines!

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Caretaking the Caretakers

March 29, 2012 at 12:12 pm (Living, Living With Chronic Illness) (, , , , , , , , , )

Being a person with a chronic illness, I rely heavily on the love and kindness of people who, for whatever reason(s), offer me a great deal of consideration and help in order to make my life not just a liveable place, but also a worth-living place. Without these people, I would have problems with everything from eating to getting to doctor’s appointments to dealing with my emotional response to disability and beyond. It’s so much more than just making sure the Del-shell isn’t in imminent harm. It’s a complex and tiring job, even when distributed among several people.

I have a veritable cast of characters that keep the Del ship afloat. Recently, there are four people who do the brunt of the work:

  • Rave, who has taken on the bulk of the Del transport. She cleans my house, she packs me for events, she cooks meals, she handles my correspondence when I can’t, she knows more about my calendar than I do, and she is content to sit quietly at my bedside for hours just in case I might need something I can’t get on my own.
  • Fuego, who has, of her own volition, taken on the task of trying to find a nutritional approach to managing my pain and other symptoms. But beyond that, she has purchased food, offered emotional support, and been a tough cookie when I’ve needed it. She’s new to the cast, but she’s jumped in with both feet.
  • Winter. When all is lost and I can’t take another moment of life, it is Winter who talks me back into reality. I know I can reach out to him and be brutally honest with what’s going on inside my head, and he will lovingly listen and deconstruct, reframe and commiserate. And if nothing else, he’ll engage me in bitter gossip about people we love to gossip about, which always seems to make me feel a little better.

I try to do justice by these three (yes, there’s one more, be patient!) by engaging them only when I need, by thanking them and recognizing the work they do and making sure other people know about the work they do, and by offering them whatever I can in energetic or physical barter. I offer Rave shamanic and pastoral care counseling for free, as well as getting her into fun events for free; I talk to Fuego about things Fuego would probably rather keep personal for now, but also school her in Topping techniques that facilitate better relations with her partner; and I do a lot of reciprocal “being there” for Winter.

But there’s no argument from anyone in my life that the brunt of the work falls on my spouse and partner, Ninja. From dealing with all of the health insurance stuff, to making sure I have what I need to get through the days alone, to cuddling with me when I am sad or in pain, to being a boundary between me and the rest of the world when I need it, to headchecking me about waht my doctors tell me, and lots of little things in between, Ninja tries his hardest to be a loving, supportive partner to me. I know this is not what he thought he was getting when he married me, and in some ways I carry a lot of guilt around that. But he has never, not a moment, made my disability the focus of an argument. If anything he’s been the one asking me to slow down, to move slower, to think harder, before making a decision that may impact my health.

Ninja and I are not in the best place our relationship has ever been. It’s very personal to us, so I’m not going to share details about that. But I will say that even in all of this, in nary a moment has he withdrawn his support of me emotionally or physically. Even in the midst of a heated discussion, he will make sure to fill my CPAP at night and ask me how my pain is. I worry that some of why our relationship isn’t bright and shiny is because Ninja is burned out from being my caretaker.

He’s going to read that and think that this is somehow his fault, so I want to make it as clear as I can : Burnout is not a caretaker’s fault. I get burnout from my Work all the time, and it’s not my client’s fault. Burnout is a normal, human reaction to engaging our minds and our endocrine systems on high gear over a prolonged period of time. If every day is a potential emergency, our bodies try to stay at ALERT status all the time until finally, we reach the wall and fatigue sets in. A computer can only run for so long on a battery until it either has to spend some time in conservation mode or shut down completely.

What’s so difficult for people with chronic illness whose caretakers are also their romantic partners is that we desire to care for them as much, if not more, than they desire to care for us. We feel like we are takers, and our love desperately wants us to be givers as well. But I can’t do for him what he does for me. I can’t give him a weekend where I do all the cooking, take care of all the household chores, where I drive him everywhere and make accommodations for his comfort and well being. I can’t stop being sick and in pain long enough to do all the things my heart yearns to. There are days that I can’t even offer him the decency of a civil conversation, because talking will aggravate my symptoms or because I’m too tired.

There are ways that chronically ill people can care for their caretakers, but it comes with a very standard caretaking catch: the recipient has to accept the care, and see it for what it is, and take advantage of it. For example, I am often encouraging Ninja to spend the weekend away from home without me. Even when I explain to him that this is my attempt to give him “time off” from being my primary caretaker, and that it would mean a lot to me if he did this, and that I think it would do him a world of good, he frequently (if not always) refuses this. He feels his “job” is to be here with me, and even if he went away he’d be worried the whole time and feel guilty if something arose that needed his ministration. I don’t think this is unique to Ninja-as-caretaker, either. I think many caretakers would react the same way.

However, this is my plea, not just to Ninja, but to all people who are primary caretakers for someone who is chronically ill:

Please understand that the deep desire you hold to be there for us, to provide a supportive and loving environment for us free from as much suffering as possible is as strong for us as it is for you. There are very few things we may be able to do in order to fulfill this need the way we fulfill it for you, and so we ask that you be more open to accepting our care in the forms we can give it if at all possible. So if we encourage you to take time off, to pursue things that make you happy outside of our relationship(s) as lovers as well as caretakers, please accept this as you would have us accept a meal carefully prepared to our dietary specifications. See us making the financial sacrifices to allow for this getaway as a rose, carefully picked out and placed in a vase on the dinner tray. Envision us feeling warm and sated while knowing that you are doing something that makes you feel like a whole human being, the way you make us feel when you make sure we are comfortable in our own homes.

I’d love it if people could add suggestions of what chronically ill people can do to provide care for their caretakers in the comments.

Thank you, and you, and you...

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Patienthood and Personhood

February 10, 2012 at 4:58 pm (Living With Chronic Illness, Medical) (, , , , , )

I don’t usually use this blog to just repost links, but I’m short on time and am afraid I might lose this link in the process. I’ll give you a little bit of insight into the following article (which I got from Notes from a Barking Shaman, Wintersong Tashlin’s blog.

The article is here. It is called From Personhood to Patienthood, and talks about the dehumanizing process of becoming a medical patient.

I try very hard to humanize myself with my doctors. I tell them stories, I carry lunchboxes, I wear funny tee shirts, I talk about my sex life, whatever I think is going to shock them out of their “doctor” head enough to see that I’m a lot more than whatever brought me in today. Part of this is a scheme: I know that my diagnosis will eventually require many of my doctors, or at least many specialists, to communicate about me and my diagnostic history. And to do that meaningfully, they need to know who the fuck I am beyond notes in a file. My neurologist knows me as the person with the purple hair, even though that happened four years ago. My pain management doc knows me as the patient with the lunchboxes who teaches BDSM. My GP? I’m not sure I’ve made an impression on him yet, other than “the patient who is on a lot of narcotics”. I’m trying, though. Even my dentist knows me as the one with the tight mouth. (Don’t ask.)

When I’m in the hospital, I try to remember that my nurses and doctors and everyone else I interact with is having a boring, difficult workday. Although I am a wild one when I’m not getting the right kind of treatment, I’m also the funny, laid back one who asks how their day is going and notices personal touches on their outfits. I compliment their hair, or their glasses, or even their Crocs if I have to. I look for a way to be “the cool patient”. I find that way, I am more likely to get a quick response when I need actual help; they’re more likely to bend the rules for me; and they might slip me an extra jello when no one’s looking. They also remember what’s wrong with me, and can act as a secondary medical advocate if someone in the process is being a douche.

For example, I was in the hospital some years ago with abdominal pain. We know now that it was a hernia, but back then it was just this crippling pain that kept me coming back to the ER because I was vomiting and shitting and well, basically, my GI system was on strike. But the hernia didn’t show up on imaging, and I didn’t have any signs of infection, so it was pretty frustrating. The general surgeon came to see me, and told me that if I didn’t stop complaining of pain, or complaining that my pain was as severe as it was, that he would have to do exploratory surgery to see if he could find what was wrong with me. And the risks for blind exploratory surgery were astronomical, in his opinion.

Like a normal human being, I got really upset. I was in 9 out of 10 pain, couldn’t hold down food, and now I faced the choice of risky surgery or lying about how I felt. A nurse I had befriended came in and saw my distress. She asked me what was wrong, and I told her what had happened with the general surgeon. She got Righteously Angry on my behalf, because it wasn’t his right to try to “scare” me out of surgery. Within a day, I had a new, better surgeon who eventually found the hernia and repaired it.

I also battle the dehumanization of being a “patient” in my personal life. There are times my caretakers get so caught up in seeing me as a sick person, they forget that I’m still a person underneath all the illness. A person who likes to laugh, fuck, go to movies, have a say, dance, and all those other things humans like to do. Sometimes I have to resort to pretty extreme behavior (surprise blowjobs?) in order to shock them out of thinking of me primarily as a “sick person”.

Eh, enough of my rambling. I should have been in the shower two hours ago. Go read the article. It’s good stuff.

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Reblogged: Should We Honor All The Dead?

January 8, 2012 at 12:39 am (Death and Dying, Spiritual) (, , , , , , )

A moving piece by Wintersong Tashlin, my lover and fellow clan member, about honoring the dead we’d rather forget.

A sample:

“That said, it bothers me when I see friends, colleagues, and co-religionists, who wish to have it both ways at once. The Dead are deserving of respect and honor, yet people think nothing of wishing ill on specific individuals who no longer walk among the living. Can we curse the name of the deceased saying “this person is undeserving of honor or acknowledgment” or even “may their soul wander forever, never finding peace” while also saying “We honor the Dead as a whole, for they walked these roads before us” without declaring that we are empowered to usurp the place of the Fates in passing judgement?”

I find this article interesting from two different perspectives:

1. When my birth father died, I felt guilty because I wasn’t entirely sad about it. He was abusive to me and my family in numerous ways, and by the time he died he had alienated all of us and was living on his own in a hovel apartment. When I went up there to help deal with the aftermath, it was clear that most of his family felt similarly; I basically planned his funeral single-handedly and was the only person willing to eulogize him. Now, on his birthday and Samhain, I always leave him offerings of food he likes, and if I feel him ask, I will smoke a single cigarette for him. (I quit years ago, but he was a three-pack-a-day smoker to the day he died, and it was the smoking that killed him.)

2. When I die, there will be family and friends who will honor my passing. However, after a year or two, that will likely dwindle down to a select few, and they will eventually grow old and die too. Because I do not have any children, the only youth who may have any feelings about me are my godchildren. But I’m pretty sure that once the shine of my death has worn off, most people will go on and only think of me once in a blue moon. That’s totally okay. But very few, if any, people will be invoking or honoring me as part of their Ancestral Dead. I also know that there are people who will be happy that I have passed. So I am glad that there are shamans that the Gods have tagged to honor those among the dead who don’t have anyone else to do it for them, for one reason or another.

So go check out Winter’s entry. I think you’ll like it.

Should We Honor All the Dead?

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