I Have Become Irreverent. I mean, irrelevant. Yes, irrelevant. (Emotional Rant)

July 1, 2015 at 5:06 am (Being a Rock Star, Del in person!) (, , , , , , , , , , , , , , , , , , , , )

It doesn’t matter that you recognize me, that you know my stories, have heard of my reputation. It doesn’t matter that I’ve gone to great lengths to carve out a little corner of this mad world to share my ideas and my sick sense of humor. I received no badges nor awards for helping others feel less alone with their self-made stories of suffering and loneliness. As I have less and less to write about a world quickly becoming more foreign every day, my meaningfulness and perhaps my very existence becomes the business of a small few. The ones who can’t bear to see me slink away in the night. But that’s not what really happened.

I’ve been forced to dive into almost a decade of emails, chats, notes, cards, etc, starting from when I only got teaching gigs because I was part of SMS – although as I have watched that group evolve, I don’t really think I ever really belonged. But through moxy and chutzpah and all those other odd sounds we relate to stupid confidence we have permission to both hold awe and laughter at the same time, I got some wonderful chances to live in the rarified air of a “commUNITY” (or my preferred “demoGRAPHIC”) where I did really feel that although I was never a size 8, would never be a bastion of femininity nor masculinity, that what got me hard sounds illegal to people outside of our dildo-shaped ivory tower, I did hit a ceiling.

Del the hypocrite. Blasting Pagans in ever increasing rantypants blog vomitous that our community values lay persons as much as clergy, elders, leaders, and mystics, crying for real because an event organizer I went to great lengths for threw me away before he even knew what it was that I was actually doing at his beloved events. Oh, it was never official – no one would dare admit out loud that I had overreached when I pointed out exactly how many volunteer hours doing things I did not find enjoyable nor did I do them “for the experience” nor the “exposure”, oh no. We never say anything untoward to the person we’re dissing; we wait for the prerequisite fifteen seconds after you leave to collectively feel better because at least it wasn’t happening to me…yet.

I have decided that I’m semi-retired. I haven’t actually taught at one of the East Coast circuit of events in about a year. (I do not count Catalyst Con among that, because it’s a very different thing. You can start by thinking of a certain idyllic camp ground that I haven’t been to for two years.) Yes, it’s been that long. Sure, it’s easy to chalk it up to my spiraling health, but that isn’t all the tuna in that can. I just don’t feel it anymore. In almost a literal sense.

Love and sex have become poison to me. When I can even summon the energy and the arousal for a good wank, I usually stop halfway through because I’m already imagining what excuse I’m going to hear about how this was fun and all, but they don’t want to be around for the other stuff. I’ve had some really energetically-destroying break ups in the last five years, and as I’ve confided to some, I am physically unable to even imagine having sex. Not “I can’t find a good fantasy to wank to”, but “If someone were to propose a romp with me, I would have just about no idea as to what they meant”. Also not that I’ve forgotten how to do it (and have been told I do it well), but that when I allow myself the briefest of moments to actually feel pleasure at the mere idea, the entire weight of my rapidly collapsing sense of self immediately floods my hormone channels with a hundred different reasons that sex is poison, and not even a sweet-tasting one at that.

It’s probably ironic in the Alanis Morissette way  that the one time someone has accused me of become a sex-positive professional (as in, getting paid enough to sustain my existence and expenses doing just that), it was in a court of law to prove what a secretly duplicitous person I am. Yup, it is now writ in the American Court “permanent record” that I am a professional something or other, and it’s used to hurt me. That just about sums up how I feel about desperately wanting to suck someone’s cock and knowing at the same time that there isn’t a soul who would trust me with their junk between my teeth. (Which is a goddamn shame, because I get compliments from the gay menz about my fellatio capacity.) When I dismiss those lovely compliments, I’m not doing it as some sort of egoless dodge or a invented humility: I literally think you are incorrect, that somehow you have been deceived.

At Yule, my lovely Kindred did a very moving ritual where we had to sacrifice something we felt was holding us back from our true passions. It was the first time I let anyone other than Rave see what has happened to my lower abdomen due to the ravages of 2013-14, when my body was changing radically and the doctors were wrong, and then more wrong, for a whole year they were wrong until it got so loud and brash that it was finally posted on a billboard across the street from the posh offices of my world-renown-hospital specialists. And the damage was done, and cannot be fixed unless I’m willing to risk my life. Which I am not. At least, not for that.

I tell people that I am the target of a large amount of slander, libel, threats of violence up to and including death threats. There has been a small escalation as of late, where I am pretty sure some incidents that have happened to and around our home were not coincidences. Another one of those times when I want to pick up a person desperately trying to be a shaman for Gods-know-what-reason and shake them and show them the notes on the windshield, the noisy investigations, the blog posts they don’t think I not only read but curate collections of. And no, I’m not talking about the obvious, because no. Oh, soon, I will have permission to loose my lips on some shit that has gone down, in a desperate attempt to have me die sooner, and with as much suffering as possible.

And I’m not making that up, either.

Am I depressed? Fuck, wouldn’t you be? I answer this the same way every time my primary care doctor asks. And she ups my antidepressants and asks about the last time I spoke to my counselor. I have regular meetings with the local Hospice palliative care nurse, at my house. I have a nurse who comes to give me meds and take labs.  I’m not exactly the life of the party I once was. And the pressure on and in my head that screams I just wish we could skip to the good part, and I’m absolutely okay if that good part is a remission of symptoms as much as any other outcome. Just right now, this, this quicksand of shit and rotted meat and broken oaths and broken windows and having to paw through decades of memories as though they hold no emotional sway, mere pieces of evidence of what a wretched human being I am for thinking that lying to me several, several times from the day we met until the day you decided this was too hard for you and completely abrogated the only thing you had to say to me as we officially parted ways.

I want to be clear. This is NOT* about my divorce. In fact, most of the time that’s a good source for a chuckle and a snappy comeback. It has something to do with the ridiculous amounts of completely irrelevant reams of paper that no one will actually read – but I’m happy to supply it. Because what is most appropriate for me right now is large amounts of paperwork as though Catbert were at the head of this thing.

This is about the role of the dying man – because we’re all dying, every single day. We play these elaborate games lest we remember that no one reading this in 2015 will live to see 2100, at least not in the living meatbag sacks we are today. (And please, this is not the appropriate time or place to discuss human life longevity or uploading your soul into a computer, okay nerds?) But I don’t share this early morning rant written on day three with absolutely no sleep because side effects, on the blog where it might seem most apropo. No, because this part of my job is directly related to the dehumanization that one experiences once you cross a line from virile to senile. From full of energy and life to barely being able to clothe yourself without a nap afterward. From remembering every embarrassing thing I’ve done in your presence to forgetting to close your garage or turn off the stove.

I don’t feel relevant anymore. I only have fleeting moments of feeling like lifeblood isn’t just pooling into my legs, cementing me in front of my computer even when I have friends waiting in my living room in hopes I can gain a spoon to share with them. I look at my class list and think, “When was the last time you actually did that, y’know, for fun?”

I never know how to end these cathartic blog posts. I just run until I hit empty, and then press the button. The rest of it is up to you.

* This word, which changes the entire meaning of the paragraph, and arguably the whole post, was inadvertantly left out when the entry was published.

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Spiral

April 21, 2015 at 7:59 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Living With Chronic Illness, Medical) (, , , , )

It’s been some time since I updated ye faithful readers as to what is going on with me medically.

Some of you may know that I’ve spent more time in Johns Hopkins than I have in my own home since August 2014. I was diangosed with right-sided heart failure and we struggled to figure out why I kept slipping into volume overload (when your body has a lot more fluid in the tissues) after being discharged. There are a lot of theories, but the story is about to change, so don’t jump to leaving a comment just yet.

When I get that swollen, the infected tissue from my pannus starts to hurt tremendously.

So the status quo since August has been:

  • Go to Johns Hopkins ED as directed by another doctor
  • Spend a month diuresing down to my dry weight
  • Deal with bad pain from my pannus
  • Get to dry waight, get discharged with plan
  • Do the plan by the letter
  • Notice that the swelling is back
  • Seven GOTO One. (in less geek terms, rinse and repeat.)

I’ve been in the hospital more often than I’ve been home in the last six months.

Things are moving quickly, but not in a way I would have chose.

Today I learned that my congestive heart failure now includes both sides of my heart (whereas before I had been diagnosed as having right-sided heart failure). This obviously affects my prognosis, and not in a good way.

I’ve gone ahead and canceled gigs through the end of the summer. Not only does travel become much more complicated when you’re terminally ill, but I can’t guarantee I’ll be out of the hospital, much less felling well enough. And that’s not fair to organizers.So if you’ve been hoping to catch up with me at Beltane, FSG or some other event I am usually at, you should start thinking about an alternate plan.

Tonight they are moving me to a different part of the hospital. I joke with my nurses that I’m trying to win “Hopkins Bingo”, where a patient must have a stay of longer than 24 in a building in order for it to count. When you’ve stayed in all of the different buildings, you win. I got a difficult square this time; Bloomburg is 95% pediatrics, but one floor is the cardiac ICU stepdown, which is where I was. That’s not easy to get at all unless you’ve been playing this game far too long.

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Reality Bites

March 1, 2015 at 2:40 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , )

This entry will be short and to the point. I know, so unlike me. Well, here it goes.

stoneandballoon

Today is my Mom’s birthday.

Yesterday, I met with a Hospice/Palliative Care nurse.

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Close Call

November 25, 2014 at 3:09 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical) (, , , , , , , , , , , , , , , , , , , , , , , , , )

Everyone in the room – the doctors, nurses, Rave, and even me – all thought the same thing, but no one wanted to say it.

For me, it became tangible when I realized I was having visual hallucinations and disturbances and couldn’t hear out of one ear. My blood pressure numbers were getting lower and lower and no one knew why. My chest hurt like crazy and I was struggling to breathe both out of pain as well as panic. The doc even asked me what my advanced directives were – like did I want a breathing tube – which they had never done before. That’s when I knew I might actually die, like, right now.

I’ve written a lot about how I hate asking people for rides, that it feels like panhandling. Even when people assure me that I can always ask and they like doing it, I still feel terrible about the whole process. After I left the hospital in October, my team had set me up with a slew of follow-up appointments; the idea was I was not well enough to go back home and return to normal life, but I wasn’t urgently sick enough to warrant staying in the hospital anymore. In particular, Johns Hopkins runs a “Heart Failure Bridge Clinic”, the “Bridge” being between hospitalization and home. You’re able to access services that regular doctors or cardiologist offices don’t offer, like IV diuretics.

I was able to attend my first Bridge appointment, and it was pretty standard. Other than a small med adjustment, it didn’t seem like a big deal. So when I wasn’t able to find a ride to the second appointment, I didn’t really stress over it. But then I missed a PCP appointment as well. It was a combination of people legitimately unable to make it and me not being in an emotional state conducive to putting as much effort in as I should have. Both Rave and I have been swamped with a preponderance of to-do items that are all “very important” and time sensitive as well.

I don’t remember when we first noticed that my blood pressures were off. I know I had started feeling dizzy and intoxicated without any cause. But however we got there, I started getting these ridiculously and somewhat unbelievably low readings with an average around 90/60. My home nurse told me to keep a close eye on it; well, that’s not exactly true, as she first recommended I go to the ER. When I told her I was feeling fairly okay and really didn’t want to go back to the hospital (can you blame me after a series of two-to-three week stays in the last four months?), she told me to keep an eye on it until I saw her later that week.

I decided to ask Dr. Google if there was some easy things I could do to bring my blood pressure up. This is when I was introduced into my current medical dilemma: as a congestive heart failure patient, I should severely restrict my fluid intake; but the one reliable way to raise and maintain a good blood pressure is to drink a healthy amount of fluids. So over the next few days I drank more fluids that I was “supposed” to and as it were, the more I drank the better I felt and the better my numbers were.

Well, not all my numbers. People with CHF have to weigh themselves every day because even small gains may be a sign of fluid retention and could require a change in your diuretic dosing. Every day I “cheated” on my restriction, the next morning would see the resultant weight gain; usually only a pound or two, but by the end of the week I was up over 10lbs. My nurse was pretty unhappy but we all agreed that since I had a Bridge Clinic appointment that Wednesday, I would just wait and see what they had to say.

Except that no one I asked could take me to Baltimore that day. By Tuesday midnight, I sent the message to cancel my appointment. I don’t know what my plan was, but until they invent transporters I didn’t have a choice. I couldn’t even decide to drive myself, because Rave’s truck is still too broken to pass inspection and she needs my car to get to work. I didn’t sleep well that night. If I called an ambulance, they would have taken me to Hillbilly Hospital, and that was NOT going to happen. I felt defeated and depressed.

Even though Rave has been in hot water at work over how much time she takes off (mostly to take care of me), on the off chance the PTO gods would smile upon her, she submitted a request before she left work on Tuesday to see if they would let her take me to the appointment. We were pretty convinced the answer would be no, but I didn’t have a lot of other options. We were both surprised that when she got to work Wednesday morning, she saw that her request had been approved. She hopped right back into her car and came back to Hagerstown to pick me up.

We made a mad dash to Baltimore as we were cutting it pretty close, and the Clinic is one of those draconian offices that refuses to see you if you’re more than 10-15 minutes late. We even called ahead to see if that would help, but no dice. On top of that, I had only been to the location once before, and it’s hiding in one of the regular towers (instead of in the Outpatient Center) and I didn’t know which parking garage we should use. To make matters worse, there was practically no available parking in the one we chose, so we spent another ten minutes driving around in circles. We breezed into the office exactly 15 minutes late.

The nurse practitioner took my vitals and saw both the weight gain and low pressure – 80/40. She left the office to call her supervisor. Rave and I figured it was to figure out how much IV meds to give me…until more than 20 minutes go by and she still hasn’t returned. Finally, I gave voice to what we were both starting to fear – that they were going to admit me on the spot. Which is sort of what happened. There weren’t any free beds in the unit I would stay in, and after taking my blood pressure a number of times and getting consistently low numbers she felt the best course of action was to send me to the ER so I could be monitored while waiting for a bed. I am very glad to this day that this is what happened, as if I had not been in the ER when things went south I don’t know what would have happened.

Now, it’s good to know that even though my blood pressure numbers were ridiculously low (normal/average blood pressure should be somewhere around 120/80), I was upright, alert, oriented. I felt a little dizzy, a little fuzzy, and I was struggling more than usual with my aphasia, but overall I felt okay. I was more upset at the prospect of yet another long stay at the hospital forcing me to miss something I was really looking forward to (Thanksgiving with some of my most beloved tribe of the heart) and more medical complications and/or restrictions. But then things starting getting worse.

The first thing that clued me in as to how serious things were getting was when they moved me into the ERs version of an ICU bed. I was wired and constantly monitored. They took my blood pressure in just about every way conceivable – while I was in different positions, on different parts of my arms, and with different sphygmomanometers. My numbers were getting even lower – 80/30. 75/45. 60/40.

All of a sudden one of my ears went silent. It both felt and sounded like someone had slapped a thick earmuff on one side of my head. And of course, doctors and nurses and other hospital personnel are asking me a thousand and one questions and now I couldn’t hear them clearly. I was also getting more confused and finding it harder to understand everything that was happening. At one point, someone offered papers for Rave to sign because I was acting so erratically. (Yes, it’s legal, as she is my designated medical proxy.) I do remember someone asking me to state what was in my advanced directives, mostly about whether or not I had a DNR.

That was the first time I really and truly thought to myself, “This could kill me. They’re doing this because it’s possible this could actually happen.”

That was also when I noticed the visual distortion. I saw fireworks everywhere. Lots of red and off-white lights danced everywhere I looked. After images were causing trails if I moved too quickly (or if the thing I looked at moved quickly too).The light was getting brighter, to the point where I couldn’t really see anything else around me. My sense of chronological/linear time goes fuzzy at this point, so I have no idea in what sequence things actually progressed.

I do remember starting telling people, “I’m really scared. I am really, really scared.” Somehow, my reasoning said that if I refused to lay down I wouldn’t pass out or die. I started breathing more deliberately, again thinking that if I just kept willing each breath I wouldn’t stop breathing. The lowest recorded blood pressure was 40/30, although doctors are skeptical that it actually got that low since, in fact, I didn’t pass out.

That was just about a week ago. I eventually made my way into the critical care unit (which they call “stepdown”, as it is a transition between ICU and a medical floor) where we found out what the hell was going on. It seems there were three forces at play, and all of them were playing to win – which in this case means “messing with Del”.

  • CHF/Edema – In order to avoid retaining fluid which makes my poor heart and lungs work harder, I have to stay under a certain amount of fluid intake a day. I also take “water pills”, aka pills that make your body absorb less fluid and just pee it out instead. However, if I flush out too much fluid it puts a strain on my kidneys, which are already starting to show signs of damage from all this stress. It also leads to…
  • Dehydration – I am only supposed to ingest between 1.5 and 2 liters of fluid a day, and that’s not just what I drink. It includes any substance that becomes a liquid by the time it gets to your stomach, like jello, ice cream, pudding, salad dressing, sauce, etc. But as we all know, bodies need a certain amount of fluid to regulate themselves. I’ve always had low blood pressure, and 9 times out of 10 that’s considered a good thing. But when I was feeling dizzy and ill and I was pretty sure it was due to how low it had gotten, Dr. Google said the best bet to raise it was to drink more fluid, so I did. And even though I had increased my intake to almost 4 liters a day, I was still dehydrated because…
  • Infection – My pannus (the hanging part of my belly, the part that the 2012 surgery was about) is super swollen, which I assumed was part of the water retention caused by the CHF. Turns out that was only half of the story. My pannus is, once again, riddled with infected tissue. There isn’t a collection, like an abscess, that can be drained or removed. It is diffuse through the tissues. So my body was using every bit of fluid to make white blood cells and other infection-fighting stuff, which leads us back to dehydration. The lack of available fluids meant that the infection could proliferate faster and more efficiently. It didn’t help that I had to skip taking some of my meds for a month due to some health insurance stuff, and some of them were my maintenence antibiotics. (Bad Del.)

Yesterday I was transferred out of the critical care unit back to a medical floor I have been to before, which is nice because I know and like most of the nurses here. It also means less wires and other restrictions. The infection is pretty bad and causing a great deal of pain – the doctors keep telling me it’s the kind of healing that gets worse before it gets better. I’m on the good drugs for now – vancomycin (antibiotic version of a nuclear bomb) and dilaudid (painkiller version of a nuclear bomb). I’m in a lot of pain, but in a weird way it’s a familiar kind of pain, which makes it a little easier to deal with.

Most people with CHF really struggle with knowing how much fluid they can safely have without causing problems. Unfortunately, for me it looks like the line between too little and too much is very fine, and I’ve been warned that not only will it take some time and experimentation to figure out exactly where that line is and that there will be a lot of fuckups along the way. Fuckups mean more hospital stays.

My primary care doctor has even mentioned that I could go live in a skilled nursing facility – basically, a special floor in a nursing home that’s reserved for people of all ages who are too medically complicated to live at home but not sick enough to stay in the hospital. The idea is abhorrent to me, but if my lack of transportation is putting my life at risk I can’t fully dismiss the idea. Rave and I have started preliminary browsing to see if moving to Baltimore is even possible. However much we hate living in Hagerstown, the place we have is a godsend of accessibility; Baltimore is full of three-story row houses which will very likely not work for us. But I can’t even think about moving with a full heart until I deal with the divorce settlement, because Mike is claiming I have a part-time job with which I can support myself and therefore he should not have to pay spousal support or cover my prescriptions like he’s been doing since we split. I can’t afford a lawyer and few lawyers do family law pro-bono unless there are custody issues. It’s a big morass I cannot deal with without getting chest pain – and I’m not saying that to be melodramatic, I’m saying it because it really does cause me that much stress.

That’s the story of my close call. The reality and tangibility of the end of my journey is coalescing, and it’s a lot more terrifying than I was prepared for. One of my doctors admitted to me that if he were in my shoes, he’d be freaking out a lot more than I am. He even offered to send me a social worker to talk to, which is probably not a bad idea.

If you wanted to send flowers or the like, you can email Rave at delandrave at gmail dot com and she’ll give you the information. It would be greatly appreciated. I’m feeling kind of lonely and sad these days.

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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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Contemplation and Dedication

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But for now…

Hail Hel, Lady of Mercy and Patience.

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

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

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

Hail Hel, Entropic Transformation.

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How Do You Mourn?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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I Want It As Much As You Do

January 18, 2013 at 12:15 am (Death and Dying, Living, The Panniculectomy) (, , , , , , , , , , , , )

I get the gentle reminders, the emails, the comments in conversation. I hear them and I feel kinda guilty. I sit in front of my keyboard, the ragged notes hastily jotted down in the ICU by my side, and I try to describe the experience I had in the Underworld on December 28th.

Part of the problem is that I’m still remembering, bits and pieces hit me at the oddest times. I’ll be drifting off in thought and then another memory, in full technicolor, will hit me, one that I haven’t had before. I try to write it all down, try to make it fit into clunky, odd looking words, for myself if for nothing else.

The first challenge, I recently figured out with help from my friend Hugh (a wonderful writer and poet in his own right) is that there is no narrative to my experience. I cannot draw a timeline in which things happened in a precise order. I can try to force the images, the blocks, the pieces of patchwork into some sort of made up fictional narrative, but it doesn’t seem to want to be locked down like that. How does one tell a story without the sense of linear time?

Secondly, as I’ve said before, parts of it are deeply personal. It would take me more paragraphs to explain some of the symbols and images I saw, because you don’t live in my head, know my entire life story, or have the same reaction to certain archetypes/images/thoughts/feelings as I. It don’t know if the story wants to be weighed down in lots of explanations and footnotes, because it loses something in the process.

I don’t feel ready. One of the bigger messages I got is that this is a year of contemplation, and it may be that I’m supposed to go over these notes, try to recreate all the little scenes and memories over a much longer period of time. I am pretty certain some things that I remember will only make sense once I’ve had a chance to go a little further in this journey, like when an author drops a seemingly random piece of information about a character in chapter 2, never mentions it again, and yet it’s that tiny little factoid that solves the whole plot. In some ways, part of me is still down there, sitting on a rock having a big think, hoping that if I give it more time to marinate, it will make better sense to me.

I feel like I owe you a story, something, some piece of wisdom that came from my experience. So here’s something I feel like I can talk about, but ask me any questions and I’m likely to crumble.

Everything is a choice, she whispers. So many people, especially those ‘spirit worker’ friends of yours, makes everything in their life out to be an absolute, it must be this way, the Gods told me so. They speak of it as though this life was thrust upon them and now they’re just following orders. You can always say no. You can always walk away. At any point in time, if you are doing something, anything, and someone asks you why you are doing it, you should be able to tell them about your choice. Not all choices are fabulous and wonderful; sometimes the right or best choice is the drudgery and the discomfort. But it’s still a choice, still something that you made a conscious decision to do. Every single day, you choose to go to work, because you think if you don’t you’ll lose your job and go broke and be homeless and eventually die of starvation. You create this future in your head where the only right answer is the one you’ve chosen, and every other option ends in ruin. But how do you know that if you take today off, you might just run into someone at the Starbucks who’s looking for a new such-and-so, making twice as much money as you’re making now, in a part of the country you’ve always dreamed of living in?

Don’t get me wrong; there are wrong choices. Or at least, choices that have outcomes that are uncomfortable, and steer you away from your Purpose. But even if you’re going to make a wrong choice, you need to do it with an open heart, knowing that part of being alive is that you have complete autonomy over what your body does and does not do. You might have to make accommodations for things like disability and disease, but if you want to sleep 18 hours a day, you can make that choice. If you never want to see the sun again, you can get a graveyard shift job and only shop at 24 hour grocery stores at 4am. Nothing about your life is written in stone – not even what the Gods want you to do. We understand that you always have the right to say no, to choose something else, and then it’s our job to meddle and push and try to convince you to make a different choice, but there are plenty of people we approach for one reason or another who just ignore us, convince themselves we’re just a manifestation of mental illness, or purposefully choose to do something else because who wants to be in truck with an Invisible thing that might tell you what to eat, what to wear, what job to take…it feels like you’re surrendering that choice when you take on the yoke of working for us, but even in that we know, and honor, and are appreciative of, the choices you make that benefit us.

People say they can’t meditate, and you know the truth – it’s more that they cannot find a way to choose to meditate. It’s not like it’s a terribly difficult skill, and it’s easy to get better over time, but it means making that choice, every day, to set aside time to do it. People do this about prayer, about going to rituals, about celebrating their faith – they think that spirituality is a frivolous task, only to be undertaken by force, habit, or boredom. The reason we keep reaching out to people like you, Del, is because you can be living proof that choosing a life that puts spirituality at the top of the priority chain can still be a full and enjoyable life. So when you get together with your friends and gripe about what the Gods ask you to do, you’re working against this very simple Purpose.

This transitioned into talk about my friend Jon, who factored heavily into my experience with Hel, and I’m not ready to talk about that yet.

I want to share it with you. And I will. Over time. In pieces. As I get to better understand them, and glean what needs to be shared from what should remain personal. I am honored that you’re interested in what happened, that you don’t just dismiss the idea that something significant happened to me that day, but I need more time to write it out.

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Remote Support for Surgery: Part II

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

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

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

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

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

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

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

3.Respectfully address/invoke Hel.

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

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

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

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

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

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

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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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