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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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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Still Not Dead

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

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

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

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

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

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

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

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

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

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

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

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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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Home

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

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

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

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

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

~”Home”, The Wiz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Surgery Tomorrow

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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Don’t Panic

April 14, 2013 at 2:06 am (Death and Dying, Hospitalizations, Medical, Mental Health, Spiritual, The Panniculectomy) (, , , , , , , , , )

The theme of this hospital stay seems to be “Don’t Panic”, like the large friendly words they put on the cover of the Hitchhiker’s Guide to the Galaxy. Except in my case, I keep being told not to panic over things that I feel pretty strongly are totally panic-worthy.

I come into the ER thinking I had liver toxicity, and it turns out that I have another serious infected pocket of tissue, and yet I am supposed to somehow be relieved by this news.

Then I find out that this new pocket, although smaller than the one that was removed surgically in December, has a “skin membrane” and also has “air pockets”, both signs that it will likely have to be surgically removed rather than treated via antibiotics. Yet the fact that it’s smaller is somehow supposed to make me feel less worried.

The fact that this time, they put a drain in and practically nothing is coming out, whereas the last few times it was so productive they had to use two or three bags at the moment of insertion to contain all the output, is supposed to be reassuring. Even when the nurses keep saying, “This probably means it’s not in the right spot.”

I almost never manifest a fever or other stereotypical signs of infection until it’s at “going to kill you if you don’t get to an ER” level of infection. Yet, the fact that I don’t have these stereotypical signs is supposed to make me feel good. In addition, since nausea is not a typical sign of infection (and yet every time I get an infection my nausea gets markedly worse), I shouldn’t be worried about my inability to eat (yay weight loss, says the nurse) or that the nausea is so strong I scared my nurse into giving me a EKG because of my symptoms.

Even though I’ve already blown three veins, when I start to feel the signs that the antibiotic they won’t be sure I need until Monday is burning through my IV line, I should sit tight and suffer until the line actually blows, because it’s really important. If I ask the doctor to wait to give me the antibiotic that burns my veins out until they can use a PICC line to infuse it, I am going against medical advice. (Yes, for asking.) I am being irrational about blowing out my veins, because using a caustic med before we know if it will actually treat me is rational.

When my pain quality and location changes drastically in the span of two hours, getting bad enough to wake me up after less than a hour’s consecutive sleep in four days, I’m supposed to be reassured that since none of my vitals changed, that everything is totally okay. I don’t know about you, but knowing something got much worse and there’s no apparent reason, scares me way worse.

I don’t know. I used to love Johns Hopkins, but now it’s just turning into another shitty hospital with nurses who don’t give a shit and doctors who hate you because you’re on pain meds. It’s another ER where I get shunted from room to room for 36 hours. I’m expecting Dr WLS to walk through the door any moment now.

And this hospitalization came at a really fucking terrible moment in my personal life. Yes, including the time I was hospitalized two weeks after my husband dumped me. I really needed, psychologically among other reasons, to have a few weeks where my health was not center fucking stage. I needed to spoons to have some big conversations, and instead the things I could have fixed three days ago are starting to fall apart. I’m losing my ability to be rational and objective, and just want people to stop being stupid jackasses, rather than have to spend an hour finding a nice way of saying, “Cut out your stupid selfish behavior you twat”. I need to get the work I’m doing, done. I need to be have the ability to answer emails. I was ready for this shit in December, but not now.

Things really, really suck. A lot. I am very depressed, and very disheartened. You may see me or talk to me and I’m all smiles and jokes, but inside I feel like I did all this fighting for a life that sucks, that I tried to save something that will just continually disappoint me. In a fucked up way, I feel the same way about my life as I did about my marriage in those two weeks before my STBX dumped me; like staying and fighting is the only decision I’m allowedto make, because of what I believe, but my intuition says RUN RUN RUN.

I don’t get it. I could probably handle this if it was something different, new, interesting. Hearing that I may have the same problem over and over again over the next few years is not comforting in the least.

Oh, and PS? They’re talking about more surgery. Possibly in the next few months.

Don’t panic, my ass.

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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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