Spiral

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

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

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

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

So the status quo since August has been:

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

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

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

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

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

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

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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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It’s Not About the People, Lesson 1

November 18, 2013 at 1:17 am (Death and Dying, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , )

This post has been brewing in my brain all year. I guess I was sort of waiting for a specific moment of inspiration or insight to commit it to an essay, but since my task was to contemplate what it means, not figure out what it means (both for me and in general), I’m going to share some places my year-long project for Hel has taken me.

This simple statement – It’s Not About the People – has been one hell of a koan-like puzzle for me. And merely sitting with my confusion, rather than trying to find my way out, taught me the first of many lessons that I have since tried to apply to my life.

Lesson One: Your Job is not to make people happy, or tell them what they want to hear, or do things for them so that they will like you.

I will admit, I am a people pleaser. Growing up, I compensated for my lack of charisma and attraction by being the friend who makes you happy. If you need to laugh, I have funny jokes and stories. If you need someone to help you move, I was there and brought three friends. If you need a rare-edition book for your master’s thesis, I will devote time and energy to find it. Nowadays, I joke about my “magickal rolodex” being my superpower, in that I know such a diverse number of people who also have a wide range of skills, collections, and interests, that no matter what you might need in your life, I probably know someone who has it or can help you do it or someone who will do it for you.

But these things carry a price, something that I have to stop ignoring and come to terms with. As I am losing mobility, having fewer and fewer good spoon days, and my resources are dwindling, I just cannot afford to be all things to all people. Sometimes I can’t even afford to be one thing to the right person – looking at some of my recently failed relationships, it’s obvious to me that there were parts where I just didn’t show up and engage enough. And I’m not deluding myself into thinking that it’s all related to my physical health – I’ve been pretty depressed this year and sometimes my ability to engage with others was extremely limited because of my depression. I am taking steps to at least face how bad my depression has gotten, but right now I don’t see an immediate burst of sunshine on the horizon. My counselor reminds me that sometimes the true observation is “Things fucking suck right now.”

As I explored this facet of the koan, I really began in earnest to think about and enact some much-needed boundaries in my life. There were definitely areas that were sapping my resources fast and dirty, and it will not surprise you that most of those areas reacted with the biggest and more painful responses when I tried to stifle the flow a little. There were some people/places/things that had come to expect me to jump when they called, to never ask for compensation for my time and efforts (and in some cases, even refusing to reimburse me for monetary investments). It has cost me at least one friendship, which broke my heart. But at the same time, it gave me an intense sense of clarity as to how some people define what it means to be a friend – that for some, if you’re not actively adding benefit to their life in a tangible way, you’re not worth a phone call or email once in a while.

I also had to turn this part inside out, and I will admit that I am still a work in progress on this. I had to look at how I deal with the vast amount of relationships (not just romantic/sexual, but all different kinds) I consider important and detail to myself what levels of effort these relationships need. The obvious example is my relationship with email – I have a reputation of never answering my email, or not answering it in a timely fashion. I tend to hide behind physical excuses, although they are sometimes legitimate, about my inability to sit and type for long periods of time. (I have tried dictation, but it doesn’t work as well for reasons that I won’t get into.) But I’d be a big fat liar if I said that was the only, or even the most common reason why I don’t respond to emails, return phone calls, or other forms of communication. I did a lot of meditating on the whys and wherefores about this, and two flaws I have decided to work on. One is feeling overwhelmed too easily. It would be embarrassing for me to admit how small a day’s itinerary can be before I throw my hands up and freak out. Like most people, I have days when I am more or less productive, but the days I am less productive have become to far outweigh the more productive ones.

Part of that is a honest coming to terms with how much actual energy I have on an average day. Although most people have days where they plan much more than they can actually accomplish, that has become almost a daily occurence for me. I’m either wildly optimistic about how much I can do, or I’m overly pessimistic and do very little. The problem becomes that there are rarely days where I land somewhere in the middle – once I fail to accomplish one or two tasks, I throw in the towel and spend the rest of the day goofing off. It also has the effect of beating myself up over stuff I failed to accomplish, as well as a slowly increasing backlog that becomes really overwhelming (vs. my anxiety driven feelings of overwhelm, which may or may not relate to the actual amount of stuff I’m supposed to be doing).

This leaves me in a pretty obvious quandry: If I make “make people happy” or it’s corollary, “Do things so people will like you”, my first priority; but I am coming to stark terms about exactly how much I can expect to accomplish on a regular basis – something has to give. And although in a dream world the solution would be to find the power-up magic pills in my real-life video game and suddenly have more stamina/less pain; the harsh reality in my real-life documentary is that I can’t always make people happy if their happiness is contingent on me keeping up with correspondence or doing other forms of work (especially for free – but that’s less about money and more about reciprocity).

Hel comes to remind me, or maybe just school me, that my first and most important priority is serving the Gods, and the work that They ask of me. So learning how to create better boundaries and knowing my limitations when it comes to “the people”, helps me be a better shaman and God-employee because They get my best. Many, if not all, the people in my life give lip service to understanding this, but I can probably count on fingers how many really grok how that has transformed my life. It has been difficult, because obviously what I would like to do with my life and my time is sometimes at direct odds with what They want from me. And in some cases, I have been tasked with doing the same thing over and over again until something happens (that is outside my control), and it feels downright wrong to spend time on something that has a high chance of being shoved back in my face, rather than spend time answering email and being social. But this is only one of the harsh realities of the price I paid to live in December, that although I had already forfeited my Will to Loki, that the deal with Hel included forfeiting most of my Life. This is compounded by the other, less obvious “benefit” that I have several Divine Bosses, and even a few that just Boss Me Around, and the tangible web/chains of the many oaths and Relationships I have developed over time has made me very circumspect about my own cavalier attitude I once held about accepting the offer of Whatever God Showed Interest, rather than really sitting and figuring out if I had the time and energy I would be asked for.

In short, I started acting with the Gods the way I acted with my schoolmates when I was in Junior High School. I didn’t care if you were a Jock, a Prep, a Freak, a Stoner, a Bad Kid – if you showed me the least amount of attention, I would do almost anything you asked as long as you continued to be my friend. I mean, I had more than one person say, to my face, that they really liked being my friend but they didn’t want the people at school to know (because then they would become secondary targets to the teasing/torture I got on a regular basis), and made me agree to keep our friendship a secret. I am not quite so desperate when it comes to Gods, but I know people who have been, and continue to be so. They are just so happy that Someone, Anyone is paying them attention, that they don’t really think through what the consequences might be. Loki may be showing you some attention, but don’t come crying to me if your life gets completely upended and you can’t seem to make heads or tails of anything anymore – invite a God of Eternal Change into you life, you get exactly what’s on the tin. Odin may propose marriage to you, which sounds romantic and important and satisfying, until you learn that He wants you to abstain from human relationships, or decides that you should quit your only-means-of-financial-support job and travel around the country helping the homeless and doing ritual for Him. There are lots of stories like this, and they tend to be the stories that you don’t find on the Internet – they are the ones told around campfires, or after rituals, or during pastoral care sessions.

This is where lesson 1 bleeds into lesson 2, so I will let you know what lesson 2 is as foreshadowing for my next essay:

Being a shaman means that you work for the Gods, not for your clients.

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He’ll Look Around the Room; He Won’t Tell You His Plan

January 1, 2013 at 1:59 am (Hospitalizations, Living, Living With Chronic Illness, Medical, Spiritual, The Journey Towards Diagnosis, The Panniculectomy) (, , , , , , , , , , , , , , , , , , , , , , , )

Maybe it’s all the opiates, but I keep wanting to say something profound about how this year was full of upheavals for me and sound all poetic and mystical and intelligent. But really, I think it would just be rehashing stuff I’ve already said and done, and after surviving my ordeal I have very little desire to look backwards anymore – at least for now. I am choosing to look towards potentiality, towards the empty status update box, the (mostly) empty Google calendar, the blinking cursor at the beginning of the open Word document, and taking a nice deep breath.

A lot of my recent Underworld journey* put my feet on a very specific path, and the first step, 2013, is about being a year of contemplation – and really, things have all fell in line to make that very easy. I’m moving into a house where I will need much less help taking care of myself; both in that it is all on one floor and therefore I can make my own food, do my own laundry, and the like, but also because I will be living with my full time slave who receives such joy in her service. (And boy howdy does it make a difference when someone who you rely on for assistance does these things with an open and happy heart, rather than a resentful and lazy one.) I have much less teaching commitments, and I’m not really planning on chasing down more. (My plan is to submit to events I’ve never taught at before, just to see what’s out there, and possibly choose to ::gasp:: attend a few new things, too.) I have enough money to pay my bills and just a little extra to have a nice day now and again. I have the ability to focus on doing a little more work from home when I need more scratch, and a little less when I don’t.

Except for the all the follow up doctor’s appointments and the regular medical merry-go-round, I really don’t have a lot of reasons I have to leave the house. I mean, I love my friends and will want to see them from time to time, but there’s something to be said for the fact that we looked really hard to find something in the much more accessible city of Frederick, only to end up in the much more out-of-the-way city of Hagerstown. A casual trip to Baltimore or DC would be much more of a drive now than it was before, and we really only have a handful of friends who live less than 30 minutes away from H’town. On top of that, we found a tiny little complex that’s mostly meant for senior citizens (who were cool with us moving in when they found out I was disabled), so I expect our neighborhood to be quiet and respectful as well.

After the crazypants monkeyhorseplay that was 2012, the idea of spending a year in sacred contemplation sounds absolutely, well, divine to me. I know it scares some of my closer friends and lovers, because I do have a tendency to cocoon away from the world and not notice how long I’ve been gone until someone comes in and pulls me back out again. But I will have to find a balance, because I need this time of quiet, stress-free thinking and feeling if I am going to truly figure out what happened to me on Dec 28th.

I know many people are waiting with somewhat baited breath to hear about what happened to me and why it was decided that I was to return to the land of the living, but unfortunately it’s going to take me some time to piece it all together. Instead of something like having a dream, or even a living/waking experience, it was more like I came to in ICU with a head full of foggy memories that weren’t there before, even though I didn’t have the physical connection to those memories. I am fumbling at words here, and most of the examples or metaphors I would use might only serve to confuse the matter. For those of you who have had ecstatic trance experiences, or dissociative episodes, or perhaps even possessory experiences when you were the seat/horse, it kinda felt like that – like you’ve come back to your body, and you know it’s seen and done things that your consciousness wasn’t present for, but every so often something triggers a memory, a foreign thought, that feeling of being right on the tip of your tongue but not quite there.

Luckily, Rave was at my bedside and ready to jot down notes of the things I remembered in the immediate hereafter, when I was still in ICU and hadn’t yet fully realized what my brush with death was. I just had all these memories that both did and did not feel like they belonged to me. Like I said earlier, I’m grasping at words and failing quite a bit.

Over the next few days, I did some talking to various mystical types who were able to just listen to what I had to say and give their insight when they had any. I know when I get to the new place and set up my altar, some of the images will coalesce. When I get time to journal freely, and to get back into a meditative practice, and do all the shaman/spirit worker type things I have been putting off for a while now, it will all come into view.

So for now, I leave you with two thoughts based on my Journey:

1. Everything you do is a choice. You may feel like you have no say, like it’s the proper thing to do, that it is required of you, but in the end, the only things you have to do is “stay black and die!” (-Joe Clark, Lean on Me) That is, everything that is outside of your autonomic system is a choice. Spend a day being conscious of all your choices, every one. Do you always drink coffee that way, only because it was the way your mom drank coffee and so that made sense to you? Do you have to be someone’s girlfriend just because you slept with them last night? Do you know why you chose not to shower today, why you put your hair up, why you were mean to your coworker? Think about it, and become painfully aware of every single choice you make, and wonder what would happen if you fell out of step, made a different choice, went in a completely different direction?

2. Every time I go into surgery, I get a song stuck in my head. I have no idea why this was the song of my panniculectomy, but it was also heavily used as the background music for my Ordeal. It is “Pumped Up Kicks” by Foster the People. It is about school shootings, so that you’re trigger warning.

I like this second version a little better; and yes, I first heard this song on The Voice. Sue me.

 

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