Hanging In There

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

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

“I’m hanging in there.”

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

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

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

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

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

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

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

Too Intimidating?

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

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

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

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

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

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

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

I’m sure you get my drift.

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

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

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The Magic Number

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

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

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

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

After all, the list of symptoms I had –

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

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

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

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

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

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

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

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

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

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

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

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

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

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Opening Up Yet Again

April 20, 2013 at 4:48 pm (Death and Dying, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , )

I am having another surgery. We’re not sure exactly when, but it will be before the week is out; my best guess right now is either Tuesday or Wednesday. The surgery will be very similar,  but not identical, to the surgery I had in December: they need to open my abdomen, remove an infected abscess that has now grown to the size of “a large grapefruit”. The various departments that have been working with me since I got admitted last Thursday have being doing all they can to try to avoid this surgery for many reasons.

Firstly, every abdominal surgery I have, weakens the abdominal wall and makes me even more prone to hernias and other serious re-occuring medical problems. As these abscesses are happening as a reaction to other abdominal surgeries, in a fucked up way removing this abscess may cause more to form in the long run. These surgeries are stop-gap measures so as to avoid a much bigger, more invasive surgery; one in which they would have to remove a portion of my bowels. My plastics surgeon, Dr. Sacks, is still hoping that pumping me full of high dose antibiotic via the PICC line will soften the abscess and help it break down on its own, but he’s the only doctor still hanging on to that hope.

This surgery will be different because I won’t be having a panniculectomy this time. Instead, they’re going to cut a smaller incision, but a larger hole. (Dr. Awesome described it as being about the size of a loaf of Wonder bread.) They will remove the abscess and any infected tissue that surrounds it, but they won’t close the wound when they’re finished. If they did that, they’d be leaving a perfect place for a new abscess to form. Think of it this way: instead of just evicting the tenants, we’re burning the house down.

So what’s going to happen is they will leave the wound open, but pack the empty space with a special kind of bandage that will help keep fluid from building up. I will likely have to carry around some sort of knapsack or fanny pack that has the motors in it, but I will be able to leave the house and go do stuff as soon as I feel able. This being said, I’m currently not planning on canceling any of my upcoming gigs except for the BR class (since I’ll likely be having surgery that day.)

Here’s a cute little tidbit: Either because I mention it in passing, or something triggers it, my doctors are finding out that I have nicknames for them. They mostly know about Dr. Awesome. The resident that I see weekday mornings complained, so he’s Dr. Fabulous. When I saw the guy who is working this weekend for Dr. Sacks’ service, I flat out asked him what he wanted to be called, and he decided on the Grey’s Anatomy moniker Dr.McSteamy – but I dunno, he looks more like Patrick Dempsy than Eric Dane.

This is McDreamy, Patrick Dempsey And this is McSteamy, Eric Dane.

I’ve been doing some serious thinking about this whole thing from a spiritual perspective, as well. I’ve talked it over with my pastoral care counselor, my Clan’s shaman, and other important spiritual folk in my life. At first, I was really angry at Hel, but I’ve come to peace with that now.

The first thing I have come to sit with, and to dwell within, is the shattered illusion that just because I made it through December’s ordeal doesn’t mean that I am never going to be sick, or in the hospital, or need months of bed rest. I had somehow convinced myself that if I just healed from that surgery, everything else was going to be smooth sailing from there on out. The arrival of the madness quilt, as well as the writing I’ve been doing for the book, let me sink into this soft comfort zone of not having to deal with all this death and dying stuff.

I had forgotten that way before I accepted this deal with Hel, I had agreed to be the Dying Man for Baphomet. Part of that Job is to explore the spirituality of dying and of death, so as to bring peace to others. In an odd way, the December ordeal was a formalized first step in that process, a “put up or shut up” moment if you will. I had talked about being the Dying Man, but honestly I hadn’t really thought about the nitty gritty of the death processes. Once I knew I had to face the surgery in December as some fashion of death, especially not knowing if that fashion was going to be literal/physical, I started doing a great deal of reading and research about the physical act of dying. I looked at pictures of dead bodies for the first time, real dead bodies and not just live models made up to look dead. I watched documentaries about how we treat our dead, the funereal processes and ancestor veneration. I read a ton of Near Death Experiences, and attempted to have my own through meditation (and meditation alone, I promise you.) Even after I woke up on the other side of the ordeal, I wrote a lot in my private journal about how the death process feels and what it’s like to be newly dead.

All of this, though, lived inside my own head. I still haven’t said very much about what happened to me, or what it meant, or how it changed the way I saw my own life and the lives of those closest to me. I’m not sold that it’s meant for public consumption, and by no means am I trying to say that I will continue to get abscesses until I poop out some incredibly spiritual insight on the means and manner of death and dying.

I do feel, though, that it’s important for me and for those who allow me space inside their head (by reading this blog or being my friend or anything in between) to cherish their lives. Each and every spoonful of energy is important, and what you do with it matters. This doesn’t mean you should never rest, running around trying to make every moment the best possible moment to the detriment of your soul and body; but it does mean that you can celebrate the fact you’re alive as often as you need to. You don’t need – nor should you really want – constant reminders that this life could end at any moment and therefore you should launch into everything that scares you or gives you pause. But even in the scant few months I’ve been back among the living, I have already fallen into the old pattern of allowing circumstances to overwhelm me. I spent more time feeling stressed and emotionally wrought because the effect of making choices that put my desires and needs before those of others keeps holding me back. I even got a message from a God telling me that if all those pulling me in a thousand directions didn’t stop, Hel would revoke Her permissions around having human relationships.

I let it get that bad, and it got that bad fast. It wasn’t anyone’s fault but mine, and I own that. The reason this abscess got as advanced as it did is because I put off going to the doctor. I saw the swelling and had a strong guess as to what it meant, but I was so intent and focused on the idea that I was moving on from all of that medical stuff and focusing on my Work I ignored it for far too long. And what really sucks is that I didn’t even accomplish what I really wanted to do with my time instead of seeking medical care; I spent the majority of it feeding the needs of others. This surgery is, in my own mind if not in reality, a direct consequence of not putting my own needs in front of the needs of others. Of not creating and enforcing my own boundaries around my time and energy. I like to think that it’s also the reaction from other people not respecting my feeble attempts at boundaries, but blaming others isn’t going to get me anywhere, and it’s not them that are going to be walking around with a giant vacu-wound on their bellies for a month.

As your friendly neighborhood Dying Man, I will share with you that the hard lesson I’m still working on. I have a life – my own life – and it is absolutely necessary for survival that a good portion of that life belong to me and me alone. This sounds very elementary, but for those of us that spend so much time helping and serving others it can be the hardest lesson to learn. It’s very easy to put your own needs aside, to internally compare the needs of someone else to your own and always decide that the other is more important.  Even more personally, I need to remember that my soul needs the body to express itself, and because taking care of my body is so much more boring than taking care of the soul.

Another big issue is that it’s hard to start building relationship and life skills when you’re surrounded by those who expect you to have a doctorate degree. It’s a two way street in some ways – I can muster all my strength to build and maintain boundaries, but because I’m still learning what it takes to make them it’s too easy for others to steamroll over them without a thought (or better yet, stand around and say, “Aww, look, Del made a teeny weeny boun-da-wee. How adorable!”).

In order for me to survive and thrive in the life Hel has granted me, using the skills Loki imbued in me, reacting to the hot pokers Baphomet has fucked me with, I need to take more time for myself at all costs. I need to stop wasting time worrying about things that don’t directly relate to the work (and Work) in front of me. This also means that when other people try to lead me down paths unrelated, I need to be more brutal and straightforward about distraction and what distractions support and uplift me and which ones make me depressed and unmotivated.

I will write more about the impending surgery once Dr. Sacks actually decides it’s going to happen. For now, prayer for discernment and clarity of communication would be the most helpful – and NO REIKI PLEASE.

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This is a Sacred Space

April 20, 2013 at 8:21 am (Spiritual) (, , , , , , , , , , , )

I’ve been doing this balancing act for a few days now. I don’t feel comfortable sharing all the details of my medical situation on the Internet any more, not even here. That feeling defeats the purpose of having the blog to begin with. It’s all garbled up in my head and I am trying to tease it out into a long, single strand that makes sense all around.

When the Regretsians first found my blog and started making fun of me and the stuff I write (and the stuff I believe in), I was a little hurt. Eventually, I put on my big boy pants and fucking dealt with it. I posted to the forum and I addressed them here as well. The story ended very well; even though I don’t really read or post there anymore, I still go back and can always find some person I knew (oh so many years months ago).  It’s worth noting that Loki was proud of me, proud enough that He had me mark the occasion permanently.

There will always be people who will take whatever I write on my blog and use it for their personal enjoyment. I think it’s despicable and low to mine a blog about my medical condition and chronic illness for such things, but my opinion doesn’t count and I’m okay with that.

But there is real harm happening. There are people who subscribed to this blog because they really do want to know what’s going on with me, and I find myself hesitant to write about anything at all.

I prayed about it, and this is what I was Told: This blog is a sacred act. It was, is, and will be a sacrifice on Baphomet’s altar. She wants me to delve deep into the places that hurt, that are vulnerable and scary, and bring them to the fore. He thinks that my journey is important to others, not just because they care about me and want to know I’m okay, but many people read these words because it gives them comfort and insight into their own journey with chronic illness, disability, pain, and death. They need to know that their suffering matters, that their tiny prayers whispered from inside the MRI tube are being heard, that when they awake in the middle of the night because their pain is so bad they can’t move Someone is still there for them. It may not be Baphy, but it will be someone.

Baphomet also said that the sacrifice is only more blessed, bigger and better and more holy, when part of the sacrifice is continuing to post in the face of ridicule and humiliation.

This is a sacred place. This is a sacred place not because I say so, but because the Gods do. So this is the last time I will be addressing my fear of posting. This is a sacred place because the people who come here say it is so. If you wish to defile my sacred space, you act against the Gods and people who have worked to make it what it is today, and what it will be tomorrow.
SMIB.

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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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Living and Dying At the Same Time

December 6, 2012 at 2:40 am (Death and Dying, Living, Mental Health, Spiritual, The Panniculectomy) (, , , , , , , , , )

This is one of those entries. I have a thought, something not quite formed into a fully functional idea, and before I’m even done having it I can feel Mr. Goatypants breathing down my neck, pushing his fingers into my discomfort, and I know in that moment I’m going to have to write another one of those blog posts that I don’t feel entirely comfortable sharing with a public audience. So there’s your disclaimer.

As I’ve said here and elsewhere, on December 28th I am scheduled for a fairly risky surgery that the doctors are being very clear with me that my survival chances are not 100%, or even 80%. I have found it difficult to write about all the stuff that’s been going through my head, because I really don’t want people to think I’m some melodramatic queen with his hand glued to his forehead running around hollering “Oh, woe is me! Woooooe is me!” It’s not like right now, sitting at my computer, I am the typical picture of someone facing death; I’m not sickly pale (at least, not any more that usual for this Irish/Germanic redhead), I don’t weigh 90lbs with a yellow pallor to my skin. I look like everyday normal Del, walking and talking like usual. The only clues you’d have that something is amiss is that I might walk a little slower than normal for me, or I might be using my wheelchair a little more often; maybe you catch a glimpse of the large bandage on my back, or a lump in my pants where my rather large drain is hiding from view. You might see me grimace in pain, or rub my belly to help get through a cramp. But there are lots of days when I could be at a party, or shopping in the grocery store, and you’d have no idea that with every breath, I’m contemplating my death.

I’m also aware that I’m going to feel like a pretty big dolt if I come through the surgery with flying colors, regardless of whatever spiritual journey my soul takes while I’m under anesthesia. I mean, we can all hope that the on-call cardiologist will be sitting there reading the Wall Street Journal (or, if my life is at all predictable, 50 Shades of Gray). Instead of a 12 hour marathon, it has a chance of being a 6 hour jog. With luck, I’ll only have to spend a few hours or a day in ICU to stabilize, rather than the grim prediction that I will wake up on a respirator and take days to come off of it. I will feel incredibly embarrassed if I got all emo about things, only to find out it was a normal day at the office for everyone.

I’ve also been kind of vague as to why something as ho-hum as a tummy tuck carries all this risk for me. I have my reasons, and the biggest one is it’s (finally) a detail that Baphomet has not forced me to share, and I’ve learned to take my privacy where I can get it. I’ve been answering a lot of email, and started a small working group on Wiggio for those who are actively interested in helping out. They get the brunt of my Victorian wailing and detailed outpourings about how I think every single thing that has happened to me in the last four months is somehow of utmost importance now.

So where does that all leave me? Inside my head, there’s this giant grandfather clock, ticking away every second between now and 8am December 28th, when I plan to inhale from that intimidating mask (and this time, they can’t trick me into thinking it’s oxygen…fool me once!) I look at my calendar, and all I see is drudgery – doctor’s appointments, looking at apartments, finalizing my handparting with STBX, dealing with the bureaucracy involved with my shiny new legal name change – and then over the weekend, where I was very much having fun with the Boyfriend, I had a thought…

You know all those awkward conversations you have with people when you’re first getting to know them? Where you ask them questions like “If you could have any superpower, what would it be?” (Paint. That is the superpower I would want. Ask me sometime.) One of those question is usually something like:

If you have 24 hours left to live, what would you do with the time you have left?

Well, I’m pretty damn sure that in all the times I’ve asked someone that question, their answer was never “Go to three doctor’s appointments, make a hotel reservation, and check your bank balance to make sure you have enough money to pay that bill.”

So I started looking at December again. Whether or not I’m actually going to die on the 28th, who is it going to hurt to take a few chances, to get in some fun and enriching experiences, while I still have the time. I started looking at the available days I have left, and daydreamed about the fun stuff I could do.

I won’t list the entire list here, but I’ll give you a taste:

  • Go to a strip club and get a lap dance from the most attractive (or skeevy, depending on the joint) dancer
  • Go to Rocky Horror at least once
  • Make one day memorable in some way for the handful of my closest peoples.
  • Go out to a ridiculously expensive and lavish dinner. (I’m thinking either steak or sushi. Who’s in?)

Then, while I was lost making my mental list, I ran across this very thought provoking post by Ivo Domiguez Jr, on the concept that Life and Death are points on a spectrum, rather than a binary. Obviously, as someone who is a big fan of the idea of spectra vs. binaries, my eyes perked up. Although I find this post fairly basic, I’m waiting with baited breath for part two.

It made me realize, too, that this month I have to find that tipping point on the spectrum being Living and Dying. Although it’s my Job-with-a-capital-J to be “The Dying Man”, I best remember to spend some time this month being “The Living Man” too. So who is up for some shenangians? Email me! I’ll likely say yes to whatever wackiness you’re willing to drive me to!

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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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This is not all of me.

July 4, 2012 at 12:09 am (Living With Chronic Illness, Medical) (, , , , , , )

I haven’t made an official announcement on here, although many of those who read this blog already know – I have started a second blog, called Sex, Gods, and Rock Stars. As I have discussed on here before, in Pushing the Limits, I wanted a place where I could write about all the other aspects of my life – spirit work, sacred sex/kink, being an educator/presenter, ordeal, etc. Dying for a Diagnosis was always meant to be a very specific, topical blog: a place for me to talk about my medical condition as well as the spiritual aspects of chronic illness, dying, and death.

I hope it’s clear (but I know it’s not) that this – this blog and what it discusses – is far from everything to know about me. I was engaged in an online discussion today about how, because what they know of me mostly comes from here, they assumed that I am consumed by my illness. That somehow I am unable to live up to simple obligations, like having a conversation at an event, because I have limited spoons. I also have had events start to try to artificially limit my involvement because the organizers read this blog and think, “Well, if you’re that sick, we shouldn’t ask that much of you.”

This blog is not a journal. What I write here is a very specific subset of all that I am, experience, or know. This blog is a devotional act; I asked Baphomet to assist with my dying process, and S/he asked that I write about it in exchange. This is not the repository of all that is Del, or even a reliable source of understanding what my day-to-day existence is like. In fact, sometimes I end up taking long DfaD breaks because nothing interesting is going on in regards to my medical stuff.

I do have some things to talk about, medically, for those who are interested.

So as you guys know, I usually hate asking lay people for medical advice. I get more unsolicited advice than someone who publishes their phone number in the newspaper. However, I had these skin irritations that looked an awful lot like psoriasis, and I happened to have a friend with psoriasis, so I asked them if they thought that’s what it was. (It’s worthy to note that these irritations happen to be on a part of the body I need a mirror to see.) They flatly denied it, over and over again. So I kept trying to treat them with OTC creams and ointments, but they continued to itch and flake and be irritated for months.

In other skin related news, I developed these odd brown spots during a recent camping-in-a-campground trip. They weren’t bug bites or burns, and I had three of them (two on my arm and one on my breast). They just appeared one day and have faded a little, but not healed. They are definitely not bruises, either.

So finally, between the two things, I broke down and made an appointment to see a dermatologist. I saw Dr. David Lee in Damascus, and I highly recommend him. He was pleasant, efficient, and his office was very pretty. There’s something about dermatology (especially if you watch Grey’s Anatomy and remember the derm thing) that screams luxury, which is probably why I put this off for so long.

It turned out that the irritations are psoriasis. ::shakes head:: I need to listen to my gut more often. They will likely never fully go away, and I may develop more spots like these over time. It’s not uncommon for people with immune system issues to develop psoriasis, as it is in itself an immune dysfunction. I got some steroidal cream for them and it seems to be working well.

The doc was pretty sure the brown dots are nothing to be worried about, but the scary word “biopsy” was thrown around a lot. We decided in the end to wait three months, and when he checks on my psorasis he’ll also see if they’re still there – and if they are, it’s ‘take a bite out of Del’ time. Great. This will be the fourth cancer scare I’ve been through. Whoopie.

Anyway, there’s your medical update. Please go look at the other blog, and maybe subscribe to the updates there, too. I’d really like it if you online stalkers got a much more rounded view of who I am and what my life is like. Also, I write about sex. You like sex, right?

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Pushing the Limits

May 9, 2012 at 10:35 am (Chronic Pain, Disability, Living, Living With Chronic Illness, Mental Health) (, , , , , , , , , , , )

I am, at heart, a pusher of limits. If you tell me I (or you) can’t do something, I am literally obsessed with finding a way to make it possible. This may sound like a mostly positive thing, but as one may expect there are times when pushing a limit means falling off the cliff hidden behind it.

I did an image search for “pusher of limits” and this was one of the first images in the results. I’m not sure my Pusher of Limits looks like Grover, but I just couldn’t resist.

Things have been a little challenging for me lately, as evidenced by the fact that I haven’t updated the blog since April 18th. I’m very sorry about that; I am trying very hard to make at least one post a week, but as the warmer weather defrosts my schedule, my responsibilities as a traveling educator start to eat up what little post-surgical spoons I may have had lying around. Not only was I teaching classes at the event, I facilitated a very intense ordeal. So intense, in fact, that several of those close to me pulled me aside beforehand and very seriously asked me if I was physically up for the demands of what I knew (and didn’t know) would be expected of my corpus habitus.

Pusher-of-Limits said, “I can do this. I will make it work.” Saner-Voice took steps to try to reduce the impact on my body.

Now that the event is over, and the season of events has begun in earnest, I’m seriously taking stock of where my health and my desires intersect. Pusher-of-Limits keeps telling me that nothing has to change, that I can continue to travel and go to camping events forever. Saner-Voice and Corpus Habitus disagree.

I turned to Ninja the first night I was at Ramblewood (a campground that hosts several alt sex/spirituality events during the summer) and said, “I shouldn’t be here. I can’t hack this. I need to rethink some stuff.”

I won’t lie. Even with having a personal golf cart, and two service people plus my spouse and friends who don’t mind lending a hand, it was fucking hard. I was frequently in pain, even if I didn’t show it. My incision, which is still healing (but doing nicely) hurt like a mo’fo most of the time. I didn’t get to do or see as much as I would have liked, spending heaps of time in bed with my Nook banking spoons for my obligations. I did get to have a little fun, but it was short and sweet and sporadic.

Wanna know a secret? I am scared to death that I can’t do this anymore. I was scared every moment that I was there that something would go wrong, that I’d be rushed to the emergency room in a strange place and have to find a way to explain why I was at a campground three weeks after surgery. I am terrified that the level of ability I have now is dwindling, and each event I attend I have a moment of “This may be the last time I can do this event.”

Doing these events for me is “being with the people”. I spend so, so much time in isolation, sometimes only seeing my spouse and my slave for weeks at a time. Other than doctor’s appointments, I rarely go out just for fun, and three times out of four I have to cancel because I feel like crap. The artifice of “obligation” that comes with being a presenter for events helps motivate me when really, if it were just another social outlet, I’d likely cancel. Even while at the event, there are times that twenty minutes before class time, I’m in my bed desperately summoning spoons so I can just get through the next ninety.

So it was with great trepidation that I saw Dr. WLS yesterday. I knew my drain had been very active while I was away, and my scar was aching at a pretty intense level. I honestly don’t know if he’s just so focused on ending our relationship that he wasn’t concerned, or if I’m really doing better than I think, but he “advanced” my drain (moved the tubing out about three inches) which is a step towards having it removed. He looked at my scar and said it was healing very well and didn’t look infected at all.

Today, the limit pushing is a different one. Now that I’ve realized Dying for A Diagnosis, and have a general feel for the difference between blogging and journalling, I’m seriously thinking about starting a second project, where I can talk about spirit work/shamanism and ordeal/kink, which only sometimes is appropriate for what this blog is for. I need to figure out if I have enough writing spoons to take on this new blog without neglecting this one. Baphomet is skeptical; if it were up to Hir, this would be my focus and I’d write in here every day, pumping out as much content on chronic illness and spirituality as I possibly can before I die.

I am aware, as I ponder this, that DfaD is more than a blog. It’s a devotional act, a very important vehicle of communication for those who feel vested in my health, and a meaningful tome for those who suffer from chronic illness and need to hear our stories told in honesty and truth. I need to evaluate my reasons for wanting this other blog, and what commitments I can make to it while still striving to post here at least once a week as health provides. There are a plethora of blogs about shamanism and ordeal/kink, but not as many about the spiritual experience of dying.

Can I push my limits a little further? Or is it time for Saner Voice to rule?

I made a promise, and sealed it with death. I will live up to my promise first and foremost, and will not shake the responsibility You have put on my shoulders and in my heart. Hail Baphomet! Rex Mundi!

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Milestones

October 11, 2011 at 9:30 am (Death and Dying, Living, Spiritual, Uncategorized) (, , , , , , , , , )

Today I am the oldest I have ever been.

-Seen on a T-shirt

Today is my 37th birthday. It’s one of those years that no one celebrates. For those of you who are younger, there comes a time where you stop really celebrating your birthday every year, and only wait for the ones that have some artificial meaning, like a new decade. The only association I have with the number 37 is this:

Dante: how many, how many dicks have you sucked?
Veronica: something like …36?
Dante: 36, is that including me?
Veronica: ummm …37?
Dante: 37!! (Turns to Customer) my girlfriend sucked 37 dicks.
Customer: In a row?

-Clerks

Not really something I want to think about. (Not that anyone I know has celebrated a birthday year by trying to suck that many cocks. I have no friends like that at all.)

I’m not doing anything super spectacular for this birthday. I have a few friends coming over for dinner, and then later on this week I have a date night with Ninja planned. I already got my present from Ninja at Disney, so I don’t really have anything like that to look forward to either.

I just feel like I’m older than I’ve ever been. And yes, I know 37 is not very old in our era, but just like I felt like turning 30 was the end of my life as I knew it (and in some ways, it really was) the fact that I’m a year older now just makes me feel closer to death. Instead of thinking about the year ahead, like I did when I was younger (“Now I’m 9! Think of all the wonderful things 9 year olds get to do!”) I think about the year behind. 36 was hard.

I should feel triumphant. My life has been pretty rough – I survived a pretty challenging childhood, a terribly bad young adulthood, a complete nervous breakdown, a marriage that turned out to be a mistake, a commitment I thought was going to last the rest of my life and then didn’t, a complete destruction of my personality and sense of self and rebuilding process that took place hundreds of miles from anywhere familiar, the death of one of my parents, and now this mystery chronic illness that is slowly eating away at my ability to enjoy life. In the last year, I ended a relationship that meant a great deal to me, I have had even more intrusive symptoms that make life harder, and spent more time at home in bed than I ever have before.

On the up side, I am still here. Even as recently as this weekend, I was able to give someone a Message from the Gods that they desperately needed. I received one of the most touching love letters I have ever had yesterday from my girlfriend Ruth. I have this wonderfully strong marriage that bends and changes as we bend and change, that gives me hope and support and makes me want to wake up every morning. I get little notes from my friends reminding me that I am important to them. I know that I still make a meaningful impact on the world, in my own strange way. So it’s a good thing I have lived another year.

Instead of celebrating, I almost feel like I should memorialize the year behind. Let it go, dissolve into the ether; let it’s lessons mark me and make me stronger and let the hurts and disappointments give me resolve to look for more happiness in life. Along those lines, I reached out to someone I’ve been crushing on and made a move. Let that be my birthday present to myself. I still have hope.

In these last years I have left, I feel like I should be looking at each one like a vintage. Condense the feelings and emotions, the memories and the sensations down into something spiritually tangible. That way, when I look back at 36, I can soak in what I want to remember from it in a mouthful of complex tastes and smells, but have it be a singular experience. 36 would taste like bitter red wine, but the rim of the glass would be coated in opiates that made you feel withdrawal the next day. It would smell oaky and dark, be chewy like wine is chewy, but with a small whiff of cinnamon and tabasco. The aftertaste would be slightly acidic and the sulfates would roll along the sides of your mouth. If you drank too much of it, it would give you a really shitty hangover the next day; but just enough would give you moments of dark ecstasy, like indulging in a fetish you haven’t really come to terms with. It would definitely cling to the sides of the glass like blood, and is best served in big glass goblets that would make even the manly hands of a drag queen look dainty.

I don’t know what my hopes are for 37. I can only say that I have some. Even as I do the Work I need to do to prepare to die, I’ll take today off and think about what I need to do to prepare to live. It’s the much harder of the two, but it’s also the most fun.

Hail Loki, who gives me the fire of life through my veins, who gives me my purpose and keeps me pointed towards the Ultimate Goals;

Hail Odin, who reminds me that the journey is a gift of joy, if you put your back into it and do the Work;

Hail Erzulie Dantor, who gives me love and affection when I am lonliest;

Hail Erzulie Freda, because I should;

Hail Ogun, for challenging me to be a man;

Hail the Lady, for Her healing presence and Her inspiration;

Hail Baphomet, who in His own way reminds me that my Decay is a spiritual process worthy of reflection, but that in the end, all efforts to save our lives will fail. Even when others wish to lend their strength, it is I who must walk towards the Other Side alone.

Hail all the spirits that guide and support me, and may they give me another year of life towards my Purpose.

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