Tibetan Sky Burial

September 28, 2012 at 7:36 pm (Death and Dying) (, )

There is more than one way to deal with what’s left when someone passes on. In the United States, we’re mostly relegated to either internment into the earth, or cremation. However, in other cultures, there are a number of other ways one can choose to have their body become once again part of the cycles of the earth.

I have been attracted to the idea of a Sky Burial because I am so much an air-elemental kind of person. It’s one of the elements that gets the least amount of attention when it comes to death rites: we can conceive of the idea of becoming humus, or ash, or slowly liquifying at the bottom of the sea; but there isn’t really a way to take to the air (other than ash scattering, which I’ve seen go wrong as many times as I’ve seen gone right – no one wants a sweater full of Grandma due to the winds being precocious).

The concept of a Sky Burial is that a body is taken to a place and prepared to be devoured by vultures or other scavenger birds. Up until today, it was only something I had read about. And then someone provided me with a series of images of an actual Sky Burial.

Before I give you the link, you should be aware that these images are GRAPHIC. If the show “Bones” makes you queasy with their special-effect-corpses, I highly suggest you skip this. However, there is something absolutely beautiful about the juxtaposition of birds in flight with the remnants of a loved one.

With that all being said, I give you the link. Once again, there are very graphic and potentially disturbing images of how the body is prepared so the birds have an easier time devouring the body, so consider yourself duly warned.

Tibetan Sky Burial Images

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You Get The Choice You Asked For

September 27, 2012 at 11:18 pm (Death and Dying, Hospitalizations, Living, Living With Chronic Illness, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , )

Since this whole infection/abscess situation started, I was holding onto a secret. Something I thought I might keep a secret, not make public in any sort of fashion. It isn’t pretty or nice or paints me in a good light in any way. It cuts me to the core, but I have come to a place of peace with it now, so I think it might be safe to start writing about it.

I had hoped that this business was going to kill me.

I am sworn to Loki not to take my own life, and doubly so to Baphomet that suicide is not an option out of my physical struggles. But there I was, a few weeks fresh from being dumped by the person I thought would walk me to death, and I was done. I saw no reason to keep fighting, to keep dealing with the constant pain and suffering this body puts me through. I felt empty and broken, and when it turned out that I had another severe medical crisis on the horizon I honestly thought to myself, “This is the exit door I asked for.”

When the doctors came to me and explained that the panniculectomy is not only necessary, but very high risk, I wasn’t surprised. In a round about way I had asked for this – I had begged Loki for an option to suicide, and here it was being presented to me on a silver platter, just as I had ordered. And as the news hit my other spirit-worker and shamanic friends, without any chance for them to converse on the subject, they were telling me one by one, “You’re going to die during this surgery.”

“I know”, whispered my heart. “It’s what I wanted.”

But then, because they love me and care about me, my shamanic friends start talking about fighting back. This doesn’t have to be a one choice route, but a crossroads, like any other. When they put the mask on my face to put me to sleep, if I know in my heart of hearts that I want to wake up, that I value what I have, that I have drive and focus and the desire to go through the healing process and finish the work (and Work) that I have left on the earth, then I could make that choice.

But I had to have my whole heart behind it, and that worried me.

I’m honestly admitting I was having suicide ideation. Not necessarily killing myself, but that at any moment, the bells and dings and whoops of hospital machinery would go off and I would just slip into unconsciousness: then it wouldn’t matter if my soon-to-be-ex visited me or not, or whether I had the fortitude to see him move on with his life and his loves without me; it wouldn’t matter if I wanted or did not want to continue to see my body deteriorate and become sicker over time, or if I just wanted to slowly lose grip on the run-down beater I feel like I’m driving and become that spirit-self that feels so free, so unencumbered. And there were a few moments, where my blood pressure plummeted and I felt woozy and dizzy, and I would think to myself, maybe this is it, maybe I can let go…

…but it never came. And more shamanic friends came, did divinations or just felt intuitively that I am getting ready to face what could possibly be the second or third gate in my dying process – the choice to go on in the face of the unknown.

A few days after I got home from the hospital, I had a diviner I trust do an extended reading on the crossroads ahead, and he laid it out plain for me – I had to make this decision based solely on my own experience, not my experience of other people or the desire to share experiences with others. I had to commit to seeing this “dying man” route from start to finish, that my curiosity and desire to continue to be embodied had to grow stronger than my desire to give up.

The choice is there. It’s tangible, in every moment I reach out and really allow myself to feel it. I can choose to give up now, to let this be the final curtain, and let the end of the story be the failure of the one relationship I put the most trust and effort into.

Or not. The hardest part of this crossroads, like any good past vs future choice, is that I have no idea what the future will bring. Well, that’s not exactly true; I’ve had a fair amount of divination in the last few months to try to help guide and shape my expectations and desires for what lies ahead. I know that there’s no miraculous cure on the horizon; not even the surgery I face will do much for the chronic pain, the immune system problems, the tuberculosis, the neurological symptoms, etc. That’s all part of this thing that I will be chasing until the day it takes me.

What the divinations have told me, the only information I have to go on, is that as time progresses, I will dive further into spiritual pursuits, do a lot more writing (if “The Bard” comes up one more time I might scream!), hopefully pass along some of my skills to people who will outlive me, and basically become subsumed into a life that dissects between medical chicanery and spiritual Work.

It was also made clear to me that when I make this decision, I can’t do it because of, or for, any relationships or specific people. While I was first pondering all of this, and influenced by my dissolving marriage, I waxed poetic about my philosophy that part of committing to a relationship is the anticipation of seeing where that person’s journey takes them. And yes, I do want to know what the future holds for Rave, Alex, Winter, Carla, Ruth, Lizzie, and other people I hold dear. I want to spend more time with my godsons. I want to deepen friendships and continue to experience the depths and breadths of love that are afforded me. However, this can’t be part of my decision, because if nothing else, my current situation reminds me that all relationships are temporary in their own way. It could possibly be very detrimental to my mental health if I go into this decision thinking of my relationships, only to have one or more of them come to an end in a way that leaves me regretful. That’s a lot of pressure to put on a person and a relationship, too.

In the end, it’s just me and Death, looking each other in the eye and figuring out if I need the chicken door. (When I worked in a haunted house, the “chicken door” was a hidden early exit for those who found the experience too intense.) Because this isn’t meant to be the natural end of my life, but more an option that I clearly asked for.

If it isn’t already clear from what I’ve written, I wasn’t sure what my answer was going to be at first. Well, if you ask Alex, I was probably leaning heavily towards the chicken door when this first came to light. It’s hard, facing the reality of spending focus on ending a relationship I didn’t want to end, and moving forward in a way I had never anticipated. Add to that the knowledge that my body will only continue to hurt and act out against my will, and maybe it’s better to leave now before things get much worse. I sincerely worry about becoming a burden on my support structure – between financial needs, health insurance, emotional needs, logistical needs, it’s not like I can just pick up and start working again. From here on out, I will be living on the kindness of others in one way or another – alimony, SSDI, socialized health care/medicaid, welfare, donations, etc. No person I’ve met is happy with that sort of reality, even if it’s the only one they get.

It was also too easy to see all the negatives. I had to dig fairly deep to find positives about moving forward. A lot of it in resting faith and trust in the Gods, and although you might think that comes easier for me than most, you’d be partially wrong. Part of what shakes me about the end of my marriage is that I had prayed to Frey the day before I met my now soon-to-be-ex-spouse. I always considered him a gift from Frey, and was regularly thankful to Frey for sending him to me. His departure is his own doing – of that, I am 100% certain, in there is no divine hand pushing this through – but it still makes me question my ability to lay blind trust in my interpretation of what the Gods have to say to me. So no amount of divination, mediation, or any other sort of attempt to utilize the strands of wyrd to predict what lies ahead is completely reliable to me.

As time passed, though, and I turned on my “looking for signs and omens” eyes, I started to see a glimmer of a future I could very much enjoy. I am free now to do a lot of things, and pursue a lot of interests, that I had been hampered from in the past. One way or another, I won’t have to sacrifice my body in order to earn a living (the upside of the whole ‘being a burden’ issue), and that also means that I am free to pursue hormonal transition, living life in a less gendered expectation, and having a lot less pressure to be able to slip into heteronormative mode in times of need. (*My* family already thinks I’m a professional weirdo, and they already know about my intent to take testosterone, so I don’t need to hide that sort of thing from them; I just don’t have to put on the “good wife” drag for someone else’s parents/coworkers/children.) I can see myself pursuing differently-structured relationships – there’s a whole post brewing on why I’m done with the whole concept of marriage – in a way that works more naturally for me. I have a strong family-of-choice who understands that should I choose to live, I will need their emotional support, and they’ve been quick to tell me that they’re ready and willing.

I can see it, a year from now, two years from now. It isn’t perfect, but it’s not terrible either.

So a week ago, I chose. It was odd. It was late at night, and I was having one of those heart-to-hearts with myself about the whole matter, after having a lengthy divination done on the subject. I thought about death, and about what giving this all up would mean, and I just decided I wasn’t ready. I look forward to what the future holds, even if it’s radically different than the mere glimpses I’ve been able to discern.

When I chose, I felt it. It was as if the door to Death closed a little more. See, it was made clear to me that I’m still going to die, but that something will happen to bring me back. For years now, Raven has been trying to convince me that I was walking a Death Shaman’s path, and I think this is the final door in that process. The surgeons have been clear with me, that this is a risky surgery with a lot of potential problems, and it’ll only take one thing going wrong for everything to change.

However, I’m also prepared to be wrong, and that I will actually die from this surgery. When I felt that energetic shift after I made my choice, it was as if I had also come to peace with the other option as well. It’s not what I want, but if it happens, I’ll be okay with that too. I accept the consequence of asking for a chicken door, and if Loki decides to push me out, it’s nobody’s fault by my own. Also, surgeons are humans who make mistakes (boy howdy) and maybe there won’t be some big divine moment as much as my apnea will just take my breath away; or my blood pressure will plummet to suboptimal levels, or a surgeon’s hand will tremor and nick the wrong thing. I’m looking at these last few weeks before I go back to the hospital (I get a date sometime next week) as a chance to come to a place of resolution about the life I have already lived. Because I know that when I come back, it won’t be the same.

In that way, no matter what happens, something about me will die in that OR. I don’t rightly know what, but I’m sure I’ll feel it one way or the other. There has been some speculation as to how things will change, but I’ve decided not to worry about that until the time comes. I figure it won’t be hard to miss. I might not feel it when I wake up in recovery, but as I try to resume life as I know it, I just know that it will be like my last transformation – I’ll reach out to something familiar, and it will taste of ash. It will have been burned away, like so much of my life in NY had been. I’m definitely looking into a few logistical changes, like where I live, as something that might end up changing permanently once again. I may lose spirit companions, or be repurposed in some way, or find hobbies and other distractions that are core to me simply lose their fascination. I never thought that having gone through one shamanic transformation would be a good thing, but in this case it gives me some idea as to what may happen when I emerge from this chysalis.

So that’s one of the big secrets I’ve been sitting on in regards to my current situation. It’s why I haven’t been as present online as I normally am; I’ve taken a large amount of time to think and journal and meditate and talk and look for omens so I can figure out what I want out of this opportunity.

I want to live. Let’s hope that’s what happens. As I like to say at the end of every will-working, “this or something better for the good of all concerned.”

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Cutting Away the Heart of the Matter

September 20, 2012 at 5:25 pm (Hospitalizations, Mental Health) (, , , , , , , , , , , )

I’ve been spending the last few days weighing back and forth on how much, if anything, I was going to talk about the upcoming surgery I face. It’s high risk, and a big deal, and it’s messing with my head in a number of ways. I’ve had several divinations done about it, and the situations surrounding it, and one point of view came out during a session that I hadn’t thought about.

The fact of the matter is that they are cutting away a good portion of my panniculus, sometimes called a pannus, or an “apron”, or in more direct terms, the hanging part of my belly. The doctors estimate that I will lose 50lbs of tissue during the surgery. And for some reason, when I heard about this, I had a very nuanced reaction, but one of the major emotions was shame.

I can’t say with a straight face that I do a lot of work in the fat acceptance community, but I do support it both by being an outspoken voice for it, and sometimes financially. I have come a long way, personally, from hating the fact that my genetics dictate the size and shape of my body, to accepting and even loving the unusual nature of the habitus I’ve been given. I even teach classes aimed at people who need ideas on how to better explore and use their bigger bodies to express themselves sexually. I do not, and have never seen, my size as a disability. It is a thing to be celebrated and appreciated, not abused, jeered at, and hated.

I, like many others, went through periods where I decided that I needed to change this – and I’ve approached it from all matter of healthy and unhealthy ways. I was labeled anorexic when I was in psychiactric care, which may be hard to believe when you think of the public images of that disease, but one need not be 70 lbs to starve oneself, to deny oneself bodily necessities as some sort of punishment. In fact, many survivors of eating disorders are not thin at all, but who started down that path due to the public and private shame that comes from being overweight. Most who know me also know that five years ago, Dr. WLS put me on a protein-shake-only diet in which I lost a significant amount of weight – near 140 lbs – in seven months. This is now been identified as one of the causes of my neurological condition.

I have come to accept that this is my body, and I am not what people think. I do not eat piles of fried food, potato chips, and ice cream. In fact, I frequently get told I do not eat enough. I do have certain culinary weaknesses, and I won’t profess that every single thing that passes my lips would meet muster with whomever the diet cult leader is at the moment. I have done the atkins thing, and the south beach thing, and the paleo thing, and the cabbage thing, and the slim fast thing, and the vegetarian thing, and the macrobiotic thing, and the low fat thing, and even that really popular “points” thing. (I will admit I’ve never done the “ship processed foods to my house and that’s all I eat” thing, but mostly because that thing is wacky expensive.)

And here I sit, somewhere around 400lbs.

The reason that I have to have my belly excised is complicated. Part of the reason is because my intestines are in there, and they don’t get proper abdominal wall support, which has been the cause of all of my hernia issues. Another concern is that there is now a buildup of infected and necrotic tissue, possible due to the several surgeries having this pannus has caused. I am currently draining a very large absess that grew to large proportions unnoticed in my belly because of its size. And finally, it does hinder my mobility to a certain degree. So it has to go.

It amuses me that, technically, the surgery I’m facing is a “tummy tuck”. Of course, it’s a much bigger undertaking that some afternoon vanity procedure for a supermodel who ate one too many pieces of pizza. My “tummy” is quite large, and has organs in it, and cannot be supported by something like a binder or a girdle. (Those items just end up compressing my pannus against me, or falling off due to lack of support. Believe you me, it’s been tried over and over again by several doctors.)

So why am I ashamed of this? Why does this seem to be the kind of procedure to have in secret, when no one knows? Why do I have a hard time articulating what is just another medical procedure, when I’ve been so candid up until this point with every little other thing?

I hold my belly in my hands for a moment. I don’t want to be a part of the pressing media shame machine that tells fat people that being fat is a medical disaster waiting to happen. I don’t want to be counted among their statistics of overweight-related surgical and medical procedures. Even the lead surgeon who is performing my panniculectomy said, “It happens to people who weight 145, and who weigh 400lbs. It’s not about how much weight, but how it’s distributed.” I just happened to be descended from the “Eggs on Sticks” tribe, where all of our weight is in our trunk and abdomen. Luck of the draw, I guess.

I also can’t, for the life of me, imagine what my body will look like when the procedure is over. I had a similar surgery a few years ago, but it still left me with a significant apron; this time, they’re going to take as much as they can without putting my body into shock. The reason the surgery is high risk is because I’ll be under for up to 12 hours or longer, between removing the tissue, making sure the infected stuff doesn’t cross contaminate and is completely removed, making sure my intenstines are secure and supported by a strong muscular wall, and that the absesses won’t reoccur. Most of the images I’ve found of people who have had similar procedures end up looking like they have a beer belly. I guess that will help with making me look slightly more masculine?

But yes, I don’t want my personal medical procedure to be proof positive that being fat will lead to these sorts of things. It’s important to remember that other factors contributed to this as well – I won’t talk about whether or not Dr. WLS’s past work on my belly lead to this, because I’m still investigating legal recourse, but from that statement alone you should figure out my stance on the matter. I keep repeating to myself, “It’s about the belly, not the fat”, but it isn’t getting through.

So there’s one of the several trains of thought that I’ve been processing. Maybe you, too, have had to face the dubious line between fat acceptance and medical intervention? How do you reconcile what you were born with, with what the medical industry says is “healthy”? And how do you approach a surgery you’re ashamed to admit you need?

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Personally Public

September 11, 2012 at 10:31 pm (Death and Dying, Living, Living With Chronic Illness, Medical, Mental Health)

So first, a little business:
Thank you Daniel, Joel, Ryan, Sharon, and Killian for coming out and keeping me company. I greatly appreciate it.

Belated thanks to Rebecca, Leo, and Shane for coming out so Rave could run errands and, you know, not live in the hospital 24/7.

Also thanks to Aiden and Rose for care packages! I’ve been told there are more, but they have yet to be retrieved from WV.

Thank you, Bri, for lots of entertainment while I was laid up. I’m touched you went so far as to parody yourself just to make me giggle while feeling so sick.

Thanks to all those who have prayed, lit candles, sent love emails/texts/phone calls, who crossed their fingers for me or in any other way kept me in their thoughts.

I have a lot to process: I have basically reached Overwhelmed. Everything around me is changing, unsteady, unfamiliar, unknown. I bawl in front of my doctors. I act cool in front of my friends.

I haven’t decided how much of the next few weeks I’m going to write about. I have this odd sensation that it’s a very personal journey, and so much of my life has been public not because I want it to, but because I wanted my friends to help and support me. But I think I need to find a happy medium. I promised Baphomet that I would chronicle my journey, but that doesn’t mean it has to be a blow-by-blow.

I’ll say this much: I got some very distressing health news. I am still in shock. There is a ton of logistics and real-world things that have to get done on a very fast timetable. I won’t have time foe petty bullshit or trying to convince people to be there for me. Either you are, or you aren’t. It shouldn’t take a blog post to get you to reach out – I mean, everyone needs a reminder now and again – but I’m in this place where I need to, in a hurry, know who not only wants to be, but will do what it takes to be, a part of this journey now.

This isn’t forever. I’m sure in a few months I’ll be back with status updates about how I’m doing and what doctor I’m seeing.

It may seem silly or childish, but I don’t think it is. But when the doctor told me what the next few months are going to look like, I was overtaken with this strong urge to keep it fairly quiet.

I just need to figure out if I can live up to my promise of one post a week in a time where I’m not blogging about the elephant in the room. We’ll see.

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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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What a drain!

September 6, 2012 at 8:29 am (Living With Chronic Illness, Medical)

As you recall, I had an abdominal CT scan and they saw two fluid filled sacs. I had been instructed that if I developed a fever, had sharp abdominal pain, felt fluish or nausea, those were conditions to seek out emergency treatment.

Although I had an appointment to meet with a new surgeon this past Tuesday to discuss these sacs, it was not meant to be. Monday I awoke feeling fluish, but I commonly feel that way from time to time, so I just stayed in bed and rested. Then in the afternoon I started moving around and doing stuff. By 8pm, I was definitely nauseous and had abdominal pain. I was feeling warm, and lo and behold my temp was 101.

It was decided to head to Johns Hopkins, as that’s the hospital I hoped to have any procedures that might be necessary. It was written clearly on a white board as we entered that there was a four hour wait to see a provider, but somehow I didn’t let that sink in. In total, we waited about five hours to see an ER doc, and the first thing he did was order yet another abdominal CT (to see if there were any changes). There weren’t any, but my pain was increasing and something had to be done about these sacs, so I was admitted.

Lesson learned: JH is a great hospital and overall I’ve had a good experience. However, I would only choose to go to JH’s ER in an ambulance, as five hours is a bit ridiculous.

What’s been amazing is the night/day difference with my experience at Shady Grove re: pain meds. Whereas at SG, I was practically begging for what had been prescribed and frequently had to wait hours for a nurse, all of my nurses have been pro-active about meds, stopping by to remind me it’s almost time, and being here a little early or on the nose. It’s also worth mentioning that I feel my pain complaints are taken way more seriously here, as I am actually getting good pain relief.

Anyway, the sacs. It took a little while for the surgeons to decide what to do, as they didn’t have the notes from Dr. WLS. In the end, since his office *still* hasn’t sent them, they decided to move forward. Part of the issue is they need to know what kind of mesh was used, because it may be the cause or an irritant to the fluid collection/infection.

Yesterday afternoon, they used a cool x-ray camera to insert a large drain into the bigger of the two sacs. The surgeon told me this (likely) abscess is almost the size of a basketball! Jeepers! They also sent fluid and tissue samples to Pathology to see what needs to happen next: I may need more surgery, or a long course of IV antibiotics, or something else. The smaller sac is small enough that they’re hoping that the antibiotics will just kill it, but they’re still keeping an eye.

The sucky part of the procedure was that since my blood pressure was very, very low, they couldn’t use twilight sedation as promised. In fact, I was awake and felt the whole thing. They said they used numbing agents, but I was in a great deal of pain. My abdomen is still very achey and throbby since it happened.

The future from here is a little uncertain. I may need more surgery. I may need to be monitored until the drain reaches a predictable amount of flow. I may need a PICC line again. It’s a long shot, but they’re even concerned that I might need more hernia repair. So I don’t know if I’m coming home tonight, or three weeks from now. No clue.

Home. I can’t honestly blog about this experience and leave out the part where I feel so out of control of my element. I know Shady Grove, and even though JH is far superior, it’s still unfamiliar. I also know way more people I can ask random favors of in the Rockville area than I do Baltimore. And when this is all over, I don’t have the luxury of going to a place where I feel 100% comfortable and in my own space. Spark and Fuego have graciously been putting me up, but I have to leave the bed every morning so she can use her office undisturbed; in the living room, there is all manner of cats and dogs, which is nice for cuddles but bad for giant open wounds. If I’m in JH long enough, I could be going to Hagerstown, where things aren’t really set up yet.

I have talked with my spouse about using the townhouse, but he is unwilling/unable to find another place to sleep for longer than a night or two, and if we cohabitate then the clock to divorce re-starts, as we can’t share a roof for a year before we can file for uncontested. And that’s a whole can of worms I’m not opening in this post.

Again and forever, I have to praise Rave for being a superhero. She has been with me through as much of this as she can, sleeping on the little couch and eating little scraps of food. We had a few people (to whom we are very grateful) who have come by to relieve her so she can take breaks and run errands and such. (If
you’re reading this within a few days of publication and are willing to take a shift, you can email her at ravesblood@gmail. Please be someone I know fairly well; I’m kinda shy about letting acquaintences into my room at the moment.)

That’s where things are at. I should be seeing the surgeon today to get the results from Pathology and find out what the next steps are.

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