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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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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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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Am I Lying?

May 8, 2013 at 7:14 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , , , , , )

It’s been a difficult time. This past trip to Johns Hopkins has left me running on very low energy. There’s been a lot of sleeping, a lot of powering down, a lot of what I call “spoon banking”, times where I purposefully go into low energy mode because I have a lot of high energy commitments coming up, and I want to feel as good as I can when they happen. I’m looking at one of them this weekend, going to an event I’m kinda nervous about for a lot of reasons.

It’s been hard. The wound VAC experience hasn’t been as wonderful as no one told me it would. Basically, to be a little graphic, three times a week a nurse comes to my house to rip out foam that’s been stuck inside my wound, under negative pressure, which has partially adhesed to the wound. It hurts, each and every time, and it was only my mentioning that they used lidocaine when I was in the hospital that the nurse even thought of it.

I’ve started many blog posts, both for here and my other blog, but none of them have grown into anything worth posting. I usually only have a few paragraphs in me before I start to fade, or when all the drugs I’m on kick in and I get all fuzzy and it becomes very hard to focus. I know that people are interested in what’s been going on, have been waiting to hear how I’m feeling and how I’m recovering, but I don’t know how to make a meaningful post out of ‘Ow, sleepy, more ow, more sleepy.”

But even when I’m not actively blogging on a regular basis, I still do check in with WordPress. I read some of the other blogs I subscribe to. If I feel like I need a kick in the pants, sometimes I took at my stats. Mostly I just look at the numbers as they slowly decrease – and that makes sense, as less people read my blog when I’m not writing anything – but I also enjoy reading the search terms, the phrases that people put into search engines that lead them to my blog. Most of the time I find them either educational (I may actually write more about my experiences about both panniculectomies and hernia repairs, as many people come here looking for information about them), or humorous. My most favorite of all time is “If I eat a crow, will I get sick?”, which I assume lead the person to my post about going gluten free.

This week, however, I had a search term that made me ponder. I read it, and it made me think. It said, very simply, “Is Del Tashlin lying?” (I added the capitalization to my name.)

I am not as surprised as you might think I am. I have detractors, and I’ve written about them before. I’ve always been the kind of person that people either really like or really hate; very few people meet me and think, “eh, whatever”. I never delude myself into thinking that there aren’t people out there who have had extremely bad experiences at my hands, or reading my words, or being a part of my life. I know I’ve hurt people, I’ve alienated them, I’ve done or said something that made them think I’m a terrible person.

I honestly believe that’s true of just about anyone. In fact, sometimes it’s easier to find people who think a specific person is a terrible, awful human being, than it is to find someone to stand up for them and speak to their strengths.

When I first met the now STBX, I asked around about him. I didn’t know him very well, and we didn’t have any friends in common, so I was hoping to find someone I could trust who would calm my fears about dating someone so far outside of my social circle. And as the story goes, he had a few friends who I knew tangentially through others (gamer geek circles tend to overlap) who told me he was a stand-up fellow, and I decided to date him. He even admitted to me on our first real “date” that he had cheated on his first wife. I took that to mean that he was willing to be honest with me about both his strengths and his weaknesses, and that was attractive to me. I admire someone who is willing to offer up a full picture of who they are when you’re starting to get to know them. Usually, we’re too busy trying to put our best foot forward, to look as attractive as we can, in hopes of roping the suckers in. It meant a lot to me that he was so honest. It gave me hope.

And before we jump to the end of the story, there was definitely a middle. There was struggles and successes. I refuse to lock all of my good and uplifting memories of our relationship into a box and only focus on how things ended. I am doing everything within my power to continue to see him as I did in the beginning; someone who is neither all-bad or all-good, but a complicated person with as many successes as failures in his life.

In that vein, I’ve asked my lovers, family, and others close to me to keep their thoughts and feelings about the separation to themselves. I have asked them to be civil with him and his new family when they find themselves in social situations with them. Even though many of them are as hurt as I am, feel personally betrayed by the whole situation, because they bought into much of what they saw and felt about him as being not just a good partner for me, but a good person in general. But I think part of what makes that complicated, is that we all try hard to see our friends and family-of-choice as being generally good people. We try to downplay the parts of them that we don’t agree with, or aren’t as pretty or good or civil. How many times have you been in a relationship where you’ve done something to hide your partner’s lesser qualities? I think we’ve all been there, whether it was me explaining away the rampant anti-social behavior of my first husband, making excuses for the anti-semitism of another lover, the untreated alcoholism of yet someone else, etc. I don’t claim to be perfect, and I don’t date perfect people either.

In fact, when I fall in love with someone, I try as best I can to fall in love with their weaknesses, their imperfections, the things that most people would see as negative. I don’t go rooting around looking for them – I know they’ll show their face in good time – but when they become apparent, I open my heart even harder and tell myself that if I’m really in love with this person, I’m in love with all of them – even the parts that embarrass me, or that aren’t socially acceptable, or the parts they hate the most.

Sometimes this can be healing: I’ve loved many people’s bodies when the owner of that body couldn’t. I’ve loved people’s fight with their sexual orientation or gender identity. I’ve loved them as they made choices that would turn out to be bad for them, or bad for both of us. I strive to love beyond just the good parts, the hidden parts; to me, that’s the ground where real intimacy lies. When you can look into someone’s inner monsters and tell them they are loved.

How does any of this have to do with whether or not I’m a liar?

I used to be a really big liar. Growing up, lying was like breathing. I remember telling kids in the new school I found myself in, 4th grade, that I had a metal implant in my leg. Whenever I felt ignored or left out of something, I would go to one of them I had spun this tale to, and would say something like, “My ‘ML’ hurts!” and they would immediately leave whatever they were doing to spend time with me.

I find that story funny now, for somewhat obvious reasons. Now a days, I am terrified to talk about the depth and breadth of my disability, specifically for many of the reasons that I lied about it when I was 11. I don’t want people to be my friend out of pity. I don’t want people to stay away from me because my chronic illness makes being my friend/lover more difficult. I don’t want to shake the “I’m in the hospital” banner too often, lest it start to feel like a child crying “wolf”, and not being able to rally support when I really need it.

I also had to face a big challenge from Loki during my shamanic crisis. One of the things He demanded from me was that I never lie. I can bend the truth, I can embellish for storytelling purposes, I can avoid talking about something or omit details: some people see these things as equitable to outright lying. And maybe it is. But the promise I made was that I would never say something that was out-and-out untrue.

I am not perfect. When I am upset, especially when I am in an argument, I am apt to say whatever comes to mind in the moment, including things that are said merely to wound the person hearing them. Frequently, these things are untrue. In the moment, I find it extremely difficult to hold back from doing that; my passion takes over and my desire to hurt the person who is hurting me takes over. I hate it, it’s a part of me that I see as imperfect, a part of me I would hide from people if I could.

I sometimes know what I have to say in order to get a certain response. People who see me in the hospital sometimes comment that maybe the reason I run into problems with pain management is because I can look at a doctor and calmly tell them I’m in 9 out of 10 pain. I’m not crying, or rocking back and forth, or breaking down. I can be emotional about some things, but pain is no longer one of them. I deal with pain so often, almost always, that it is totally possible for me to truly be in excruciating pain and still have a calm demeanor. With these new bandage changes, I would be completely wrecked every other day if I let the pain take me to such an emotionally rendered place. I need to stay stoic so I can get up, go on living my life. If I let all the pain I feel all the time control my emotional state, I would very likely never get anything done ever, and would spend every single day in bed falling apart.

That’s part of what has made the last two weeks especially difficult for me. I’m not far from that. The bandage changes are Monday/Wednesday/Friday, first thing in the morning, and I find that at least for now, those days are basically “survival” days. I’m happy if I do more than just watch streaming video and use the bathroom those days – feeding myself is a victory. This weekend will be a test, to see if I can heal enough from Friday’s change that by Saturday, I can have a little fun and teach some classes. I’m totally up for the challenge, and I have to be: sometimes wound VAC treatments can last more than three or four months, and I have a very deep, very big wound. On the brighter side, I am showing some small signs of healing already, but it’s not going to be a short journey. I will be working in and through this for a long time, and I know that I am going to have to start making those days more productive if I’m going to get through this mentally.

I understand that I could choose to take more time off, to decide that this isn’t going to get any better and just close myself down until the wound is better. The problem is? I just did that, from August to February. I don’t want to do that anymore. I have a strong emotional and mental need to get out of the house, to get back to a semblance of a normal life, or as much of one as I can handle. I know I can’t be a superhero all the time, and that I will have to make choices all along the way to remind myself that I’m still not “well”, whatever that means these days. But I refuse to just sit in my house and feel sorry for myself and my pain for a year or longer. Seven months was enough.

I also accept that this is the new normal. I know a lot of people use the idea that “someday things will get better” as a way to keep their spirits up and hope alive. I have learned, through the last year’s experiences, that saying that to myself is lying. I struggled in my marriage to remind my spouse that there was no magical day coming when I would no longer have chronic pain/illness/disability, that there was no magic doctor out there waiting to give me a magic diagnosis that was going to fix everything. To me, where I am in the process, that sounds about as realistic as winning the lottery and marrying royalty and living in luxury for the rest of my life. I know that’s not my road, I know it in my bones, and I refuse to let anyone around me live in that illusion, so I have to start with myself.

I have to accept each moment as it is, not as I hope it could be, or how it might be someday. I have to accept that even if the wound VAC does what it’s supposed to and keep me from getting any more abscesses, it doesn’t mean that I won’t still have chronic pain, worsening diabetes, diminishing mobility, etc.

When I was in the hospital this last time, someone I’ve been kinda sorta flirting with came to see me. That was a big deal to me, because I still struggle with being completely open with potential lovers about the reality of my health situation. My STBX really made me gunshy about that; I don’t want to feel like I’ve sold someone a bad bill of goods by convincing them I am more healthy/painfree than I reall am, but at the same time, I don’t want them to think that every single day of being in a relationship with me will be about doctors and hospitals  and medical devices. It was hard for me to have my crush there, but it was also important. I needed to know that they understood that this is an integral part of my reality now; that for me, being in the hospital is a somewhat “normal” event, rather than the earmark of an emergency. I needed them to see what it’s like to wait for days as doctors try to figure out what they’re going to do, which is very unlike the image we get from television that doctors are obsessed with just your case and is putting all of their resources towards you until they have an answer. There’s a lot of hurry up and wait in the world of dating someone with a chronic illness.

It’s hard, because in some ways it’s like leading the conversation with your inner monsters. You don’t get the option of hiding it, or waiting until something happens to reveal what makes you less than perfect. From the moment you spend more than a few minutes with me, my imperfection is brutally honest with you. It’s there, in a way I can’t lie about.

Am I lying? Man, I wish I were. I wish I had the luxury of making all this shit up, when in actuality I’m in great health and having a wonderful time day to day. I wish my life was full of all the things I wish I could have, the things I expected I would be doing at this age. I wish I could go out tonight to a bar, have a few drinks, hang out with my friends, and go dancing. I wish I could create a world where this wasn’t my day to day existence, believe me.

But I will always have detractors. I will always have people, for whatever reason, who feel the need to either highlight the honest imperfections I have (which I don’t mind so much), or make up shit to make me look bad (I mind a bit more). But in the end, the only weapon I have to win something like that is to keep on keepin’ on, living my life as honestly as I can, and prove them wrong by just being as open and honest as I can.

So in case you Googled “Is Del Tashlin lying?”, the answer is yes. Every day, Del Tashlin is downplaying how much pain he is in. He is pretending to be totally okay with all of his chronic health problems, and that his disability never depresses him or makes him angry. He lies to himself, all the time. But to you? That’s up to you to decide. Google won’t know the answer.

 

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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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Own Your Own Happiness

March 19, 2013 at 12:00 pm (Living, Mental Health) (, , , , , , , , , , , , , , , , , , , , , , , )

Your happiness relies on you. You rely on your happiness. It’s a reciprocal relationship, one where you feed into your happiness bank, and it pays you in dividends. When you are feeling less stressed, more relaxed, more focused, more satisfied with your life, it’s easier to achieve your goals, whatever they may be. If you don’t feed your happiness bank, your life becomes a constant struggle to find a moment of peace, and you get diverted from the things that you want to be doing, in an emergency-like feeling of desperately needing that release.

happiness piggy bank

The problems may start because the people in your life – your lovers, partners, friends, co-workers, clients, employees, etc – also somewhat rely on your happiness. When you’re not feeling sad or stressed, you’re easier to work with, more fun to be around, and more able to give and receive love without hesitation. So it’s in their best interest to try to make you happy, in whatever way they can intuit that. Because it’s hard to ask, and get an honest answer to, the question, “What would make you happier?” And even if you ask it, and get an honest answer, it may be hard to manifest exactly what that person needs.

We all want to nurture the people we care about. It’s an innate feeling, hard to fight. If they are physically harmed, we want to be there with band-aids and antibiotic cream. If they’re suffering from grief, we want to give them a shoulder to cry on and things to distract them. If they’re feeling unloved, we want to give them as much attention and affirmation as we can. And if we’re not careful, two very unhealthy and unfair things result from this.

The first is that we give so much that we aren’t feeding our own banks. Everyone has heard of burnout, but few people are savvy enough to recognize the beginning symptoms, so it gets discovered too late. We spend so much time feeding other people’s banks that we aren’t doing things that make us happy, or only make us happy as a side effect. Even if making other people happy feeds you in some way, if you aren’t getting anything in return – and it’s very hard for sad, depressed, angry, lonely, neglected-feeling people to give much, since they feel empty themselves – then you’re spending what little you have supporting others. This can work in short-term situations, like when your friend loses someone close to them, but in the long term it leads directly to burnout.

The other side of this, the more insidious and dangerous side, is that the other people comes to see you as their sole or primary provider of the happy. If they aren’t taught to find their own happiness, but instead are taught that complaining to others about their bad-feeling feelings results in getting time, attention, support, money, or whatever else makes them happy, they become mice in an experiment, pushing the “happy” button over and over again, addicted in a way, to whatever it is that others have done to make them feel better. They become resentful and angry when you can’t feed them as much as last time, or if you have other things to focus on, or even if you just need a break to refill your own ability to engage.

It’s a trap we all fall into. We see each other on both ends of the spectrum, the one burned out from trying to make everyone happy, and also desperately trying to milk whatever happiness we can get from those who support us. In this cycle, we totally forget that we are able to do both of these things on our own, and in the end, it’s a better and more reliable way to get what you need.

We all suffer

Think of it in terms of money, because it’s an apt analogy. If your friend is unemployed, and you give them enough money to live on (not just an emergency fund to pay a bill or keep them housed), eventually the motivation to get their own job and support themselves starts to evaporate. As you realize that you can’t keep it up long term, and you start to lessen or withdraw your financial support, the friend blames you for not being able to pay their bills, or to buy food. They can’t see past the fact that really, that responsibility was always on their shoulders, and they just chose to rely on someone else rather than their own ingenuity and self-worth to get it done. There’s nothing inherently wrong with taking a break from supporting yourself – whether financially, emotionally, or spiritually – as long as it’s a “break”, and not “a new reality”.

I heard somewhere recently that “depression is the grief that comes from the death of part of you”. That when you realize you have to make a big life change, where something you’ve relied upon for your strength, identity, or survival (or some combination thereof, like a marriage) is over; you go into a state of grief. Sometimes – oftentimes, mayhaps – this starts not when the change actually happens, but when you (consciously or subconsciously) realize that the change needs to happen. I had already phrased this differently, for my own life, as “depression is a sign that you’re afraid to change something.” So when I get sad, angry, lonely, frustrated, or depressed, I look around my life and start to sort out what change I’m resisting or running away from.

running away from home

What makes things difficult and complicated, is that sometimes – oftentimes, mayhaps – the gut reaction is to try to fix or change whatever is making you depressed, rather than facing what it really means. And this is where we start to look to others to feed us; instead of facing the fact that you’ve become radically insecure about your place in the world, and that you need to bone up and face that, work on it, change it into something better, you start to rely on your loved ones and family to make you feel more secure. Again, though, that’s something that’s best only done in an emergency-type situation – if it will keep you from, say, killing yourself or turning to self-harm (alcohol, drugs, cutting, indiscriminate sex, going into debt shopping, etc) – but it’s not the solution. It might feel like it, because in the short term you do actually feel better; but it’s only skin deep. You can’t keep burning people out in hopes that they will fill the hole in your heart; if you can look back and see a trail of dead relationships, well, you know what they say about seeing a problem happen over and over again – it means the problem is you.

OLYMPUS DIGITAL CAMERA

But it’s sounds so easy on paper – make yourself happy. In reality, it’s hard work. Sometimes it sucks, especially in the beginning. You need to figure out what you’ve been doing that keeps you unhappy – staying in a bad relationship, giving too much of yourself away, not focusing on what makes you feel good, etc – and get it under control. That’s where most people resist the hardest – they don’t want to do it. They don’t want to break up a bad relationship, they feel like they can’t, for one reason or another. And we’re fucking talented at creating bullshit reasons why we can’t do something that will severely mess up the status quo. “But this job that pays me shit wages will lead to better things!” exclaims the person who doesn’t have enough money to pay the bills, “And it’s fun, and it doesn’t feel like work to me, and I like the people I work with, and I don’t want to have to take a job that isn’t fun or convenient. So I can’t do it.” Yes you can. It will suck, and you’ll be unhappier in the short term, but when you go to sleep at night knowing that your bills are paid, you have better health insurance, and you don’t have to sweat out the next car repair, you’ll thank yourself. Not only that, but you’ll appreciate the hard work and sacrifice that you made to get to where you are – believe me.

I have faced this sort of thing so many times in my life, I start to wonder if my diagnosis of “Major Depressive Disorder” (having many depressive episodes over a long period of time) isn’t a misdiagnosis of something more simpler – “Afraid of admitting you’ve made a mistake and don’t want step up and fix it.” I’ve made tons of mistakes in my life; maybe more than most people. I had a vision in my head of what I really wanted, but every time I got close to it, I started sacrificing things that were vitally important to my sense of self to attain and maintain it. I married Mike because I wanted something resembling a normal home life – I wanted a husband, and children, and I wanted to feel safe and comforted in that sort of arrangement. Even when it became clear that children weren’t going to just show up on their own, I still clung to this idea that he and I were a family, not a relationship, and you don’t break up with your family, right? So when he emotionally manipulated me, lied to me, cheated on me, lied to my friends, cheated on his other relationships, used money to control and manipulate me, and demanded that I keep up this appearance that everything was okay; I fell into it. I fell so deep that when it came to leaving him, I ended up waiting until he left. Yes, even after I called him on all the bullshit, I was willing to stay and work it out, because you don’t break up with your family. Even after we were separated, I tried to keep him involved in my life in some way, keep him in the role of being my family, and the more he rejected me, the worse I felt.

But anyone who’s been by my side while this has all been going on, can easily tell you that the separation has done miraculous things for me. It has freed me from all of the things Mike was afraid of, namely my transition, but a million other things, too. I was able to reclaim the course of my life, and took power in sitting down and figuring out what was really important to me, because I had learned the long, hard lesson that other people was the wrong answer. I truly believe that’s why Hel did two things in the course of my ordeal – one, she wouldn’t accept other people as a valid reason to allow me to continue living, and two, she declared that I could never make other people my main focus in life.

But things are getting dangerous in that realm of my life, because so many people are trying to get my focus. All of them seem to only want a part of it, but when you add it all together, I can point to many little issues in my life coming directly from this. I have insomnia because often it’s late at night when one or another one of my friends, lovers, clients, etc, think/know that I’m not actively working/writing/doing spirit work, etc (even though often they are very, very wrong) and so they pick 1am as a great time to process what’s going wrong with our relationship. (It doesn’t help that many of my friends/lovers/etc have jobs or lives that allow them to have these conversations at 1am, either.)

...and that has it's own effects on my health and well being.

…and that has it’s own effects on my health and well being.

I get frustrated at myself, because a terrible side effect of this is that even when a person only contacts me once, asking when they might get a piece of my time and attention, I overreact. I react with all the stress, frustration, and unhappiness that has built up from each one of these requests, and there have been many. I also feel like crap, because I should be overjoyed that so many people love me so much that they want my time and attention, and I sound like a privileged brat when I complain about it. “Oh, I’m too popular! I only wish more people didn’t give a shit about me! Woe is me!”, right? It also has the added detriment of making the people asking for my time – probably because they’re lonely, or sad, or depressed, or in some other way feeling negative about themselves or their life – feel even shittier, because I’m complaining about getting exactly what they wish for; people who want to spend time with me.

There have been warnings, too. I’ve had two very clear, verified by outside sources, knocks on the Del skull that other people are starting to take focus away from what the Gods want me to be doing; which right now, that means mostly writing, resting, and contemplation. All three of those things don’t seem like they are as important as spending time with people, nor do people tend to feel bad for interrupting such things. I was ranting the other day, when someone dared hint that maybe working on the book was really my problem, that if I had a regular 9 to 5 job, in an office somewhere, that was going through a crunch time (I have a deadline coming up that I have to meet if I want my first book to come out in June, which is very important to me emotionally as well as financially), no one would dare insinuate or state that I should just stop working and spend more time with my family/friends/lovers. Now yes, if someone was in “crunch time” for, say, a year, I could see advising them to not forget that life exists outside of work. But I only got the book deal three or four weeks ago, and the “request” of spending the year in contemplation three months ago, so it’s not like I’ve been in my hidey hole for too long. I also do go out, although mostly to events, but there’s a social element to those things and it means I’m not just spending my time in front of my computer, getting a severe lack of Vitamin D for lack of seeing the sun.

I even got some outside verification that this current frustration could be a test – whether or not I will bail on my promises to Hel at the first opportunity, and make other people a priority, rather than manage to set clear and unbending boundaries around what Hel and I both want out of what time I have left. It’s not like either of us didn’t expect this; I spent much of 2012 spending time with people, making them my focus, and so like the friend who starts expecting you to pay their bills, I’ve made many people accustomed to getting my time and attention fairly easily.

The deeper lesson here, as I am beginning to realize, is this “happiness bank” analogy. I have a lifelong (even in my childhood) issue of being so afraid of not being liked, of being alone, of not having any friends or lovers, that I go way further than most to make my people happy. I mean, again, look at my last marriage; I stopped myself from doing things I really wanted to, to keep Mike happy. I wanted to change my last name. I wanted to bottom more often. I wanted to start taking testosterone. I wanted to buy more men’s clothing. I wanted to keep my hair short/shaved. I wanted to date other people. These, and so many other things, I deprived myself of because it might make Mike feel the least bit uncomfortable. He was so used to me doing these things, he didn’t even see them. And when I brought them to light, he would blame me for doing these things without being asked. That’s true. He never outright said, “Never bottom in public, it really upsets me and reminds me that you don’t bottom to me anymore.” What he did, was get very sad and withdrawn when I bottomed to someone else. I didn’t like seeing him like that, and didn’t like being around him. Easy answer, right? I fed his happiness bank with a little of my own; I gave up bottoming in public so he would feel better.

But where I seem to be failing in this lesson is that when I take a step back, and try to illustrate to my people (my shorthand for “friends, family, lovers, clients, etc”) that I need them to start feeding their own happiness bank, and stop expecting my weekly direct deposits, they feel like I’m doing something directly to hurt them, or am being mean to them. It feels hurtful for me to ask them to be responsible for their own sense of peace, because I’m taking something away from them. It is hard to stay resolute in that, and stand by my own boundaries, even with the God-threat of losing all of my relationships over my shoulder the whole time, because like every other human, when I see people in pain I want to make them feel better.

I can’t. My happiness bank is currently overdrawn, and I have to fix it now.

What everyone's happiness bank should look like!

What everyone’s happiness bank should look like!

It starts with the most direct and dire situation – I need time to write, edit, re write, and produce the book. It’s not an exercise in ego, this project; it’s a direct line to making more money. I don’t want to get into numbers, but let’s say my alimony is barely enough (and sometimes frankly, not enough) to keep living life the way I have been living it. Events think I’m getting big in my britches when I tell them I can’t afford to pay for my own hotel, but really, it’s because I’m living on about an eighth of the resources I had a year ago. This weekend, I attended an excellent workshop on how to make more money as a presenter, especially how to do it without just demanding that events give you more in terms of compensation, and it wouldn’t be terribly hard to do some of those things. Of course, however, that they require my time and attention. This book is only one step in that direction – of being able to continue doing pastoral care counseling, teaching classes, writing blogs, facilitating ordeals, mentoring, etc – and not charge an arm and a leg to do it. It would be easier on me, and on the world at large, if I can ask many people to give me small amounts of money (paying for a download, buying a book, getting a reading) than it would be to only require my clients to pay me larger amounts of money in order to survive. I can help so many more people if I distribute my financial need among all the people I’ve touched with my words, my actions, my rituals, my classes, etc.

But I need the time, energy, spoons, to set these things up. That’s, understandably, have to come from somewhere.

Like many people who have found themselves in this situation, when I talk to people about this, they’re completely understanding – as long as that time, energy, attention, spoons, etc, doesn’t affect them. Like I have this secret cache of people to whom it’s much easier for me to say “fuck off, I need to do this other stuff.” Clients think I should tell my friends to fuck off. My friends think I should tell events to fuck off. Events think I should tell my lovers to fuck off. My lovers think I should tell everybody else to fuck off. And my Gods?

There’s that scary threat. That I’ll lose it all if I don’t do the Work. And like any good submissive, the prime directive is “take care of the property”, in this case, my life and ability to live.

So instead of writing sixty different emails to people about feeding their own happiness banks, I wanted to write a blog post that might help even more people. Maybe you need to feed your own bank. Maybe you’re burnt out from feeding other people’s banks. Maybe you’re suffering from depression because you’re afraid of the piece of you that has to die in order to make a change.

First of all, this is a universal experience. Every single human being experiences all of these feelings, at different points in their lives. Some people have it harder, especially if they have biochemical predispositions for feeling depressed, insecure, out of control, or in some other way not able to rely solely upon themselves for their own happiness. It is important to reach out to someone who gets paid to help you with that, though – because that’s the reciprocity. That’s why a therapist is better than relying on all your friends; the money makes it worth their time, and they can feed their kids and pay their bills at the end of it. (This weekend, I learned about the “resentment fee”, that is, how much money will it take so I don’t resent you for asking me to do this thing for you? It’s a useful tool for entrepreneurs who are trying to figure out how to price their services.) So if you are scared of the prospect of feeding your own happiness bank, especially if the need feels too great, it might be a good idea to seek out a therapist or other professional to get you on the right path.

Secondly, you need to know what makes you happy, and learn how to achieve those things without anyone else’s assistance. And before you tell me that “being around other people” is one of those things, you can go to a concert. Join a book club. Go to a bar. Throw a party. Do things where you create and control the situation, rather than relying on others. As I recently said, it’s so much nicer and easier for me to make time for other people if I don’t also have to invent the fun thing we’re going to go do. If you ask me out to a dinner and a movie, and you pick the restaurant and the film, I’m so much more likely to feel enthusiastic and willing to futz with my calendar to go; whereas if you just whine “I want more of your time!”, thus dumping the responsibility of finding said time, and then filling it with something more than just staring at each other, which makes it feel onerous and work-like.

wambulance

Take control! Make things that make you happy manifest. Throw your own party, instead of waiting to be invited to one! Go out and meet people, rather than expect your friends to invite you to places where potential new people might be. Put on your big kid pants and if you have to fake the confidence, the self-esteem, the security in your self, your attractiveness, do it. Practice little steps, if you have to. But I promise you, when you feel more in control of our own happiness, you’ll have more love and devotion to pour onto those around you, rather than sucking them dry of theirs.

So if you’re burned out? Say so. Don’t lay the blame at the people who have burned you out, because you chose to feed them as much as you have. It may be difficult to wean them, but in the end it will be worth it. Please remember that taking time for yourself, and solitary activities, is not self-indulgent. It is fucking necessary in order to be healthy and peaceful enough to engage with others without a bad attitude. Read books. Watch documentaries. Write a shitty novel (or a great one, whatever, just don’t pressure yourself about whether it’s good or not), it’s the doing, not the result! Take up a solo hobby by watching videos on You Tube. Make “office hours” – days of the week, hours of the day, that you respond to emails from friends, or take phone calls from them, or in other ways give to others – and make them public if you have to, so people know when you’re willing to engage, and when you’re busy taking care of yourself.

You can do it!

You can do it!

Don’t be afraid to unplug. Many of my friends have been reveling in the feeling of turning off their phones, disengaging from the Internet, not watching television, and then figuring out what to do with their time. We let so many things suck us in, distract us from the real flow of our lives, that sometimes we stop living. Mike was infamous for his “clicky games”, spending hours playing Farmville and online poker, and then complained that I didn’t spend enough time and attention with him. I understand the need for these things to help you relax, but honestly, I find they are usually just as stressful as they are relaxing. Maybe promise yourself two hours a week – a week – where you turn off your phone and disengage from the computer. Tell people if you have to, but sometimes it’s better when you don’t.

Remember that in our age of everything-on-demand, that you don’t owe anyone an immediate response. No matter if they call you, text you, email you, send you a chat, a message on social media, a comment on your blog, whatever; you have never made a promise to respond in a certain amount of time. Teach your friends by example that they shouldn’t expect you to be available to them at every hour of every day. If they complain, ask them what they expect in terms of response time, and then respond with something reasonable, taking the rest of your life into consideration. I had to make the decision that no one – not my mother, not my lovers, nobody – is owed immediate responses. If it’s an emergency, they’ll tell me so, and then I can decide if I can engage with their emergency or not. They have other people they can turn to, and if they don’t, that’s on them.

In the reverse, there’s nothing nicer than getting a message from someone that explicitly says that no response is necessary, or expected, or that I can get to it whenever I have the time. (Just, be truthful about this; if you know you’ll get pissed if you don’t get a response in two months, don’t say you don’t care at all.) So when you send someone something that requires a response, let them know they can take their time with it. After all, I’d much rather receive an answer when my friend is calm, collected, relaxed, and has time to spend on it, rather than a dashed-off, two word response that makes me feel disregarded and bothersome. Decide that quality is more important than quantity, and that you’d rather have a single email a month that was chock full of attention to detail, and interesting information, than six emails a day that are written while they’re simultaneously doing four other things.

short reply

If you’re in a relationship, be brutally honest about how much time you need from another person to feel engaged with them. Even if you’re afraid they’ll tell you they can’t meet it, it’s better to not be in a relationship where you feel hungry all the time, than to be in one where your partner is constantly feeling like they are neglecting you. It creates this terrible loop where no one is happy. And if the person you want can’t give you what you need, you have a decision to make. If you can get supplemental happiness from other sources (namely, yourself, but also other people, things, hobbies, etc), then know that you’ll be expected to feed yourself from those things in perpetuity while the relationship is happening. If you can’t, then no matter how sexy, charming, interesting, or stellar-in-bed they are, you’ll both feel crappy all the time, and it’s better off not to engage. If you’re already in the relationship and realizing that you have vastly different expectations in terms of time and attention, you have to be radically honest with yourself about whether or not you can live what what they give, and if you can’t, then you need to “take care of the property” and walk. Not every break up is about the lack of love or desire; sometimes, incompatibility is more than just liking different kinds of movies or having different hobbies; it can also mean that what you envision a “relationship” as, and what they envision, are too different, and neither of you will be happy. Fuck, read 50 Shades of Gray if you want a good example of what that kind of relationship looks like.

50 shades sucks

Beware of emotional manipulation. It can be really subtle, and most of the time, the person doing it isn’t even aware of it. But a statement like, “Oh, I really want to go with you on the cruise, and I think it would be good for our relationship, but alas, I don’t have the money…if only I could find some…” may sound like an honest statement about one’s financial situation, but it can also be a form of manipulation – implying that if the person wanted good things for the relationship, they’d happily pay your way on the cruise. But that way lies dragons, my friends. Big, ugly, nasty ones that I’ve fought time and time again. It starts out small, but once someone realizes it works, they will continue to do it. Model good behavior by stating your needs and wants in direct statements, rather than wishy-washy emotional ones. “That cruise sounds like fun, but I don’t have the money. Is it possible for you to pay my way?” I had an ex who would come over to hang out, but every time we left the house to do stuff, they wouldn’t tell me they didn’t have their own money until we were there. I remember standing outside of a nightclub, her having gotten all dressed up, driving over there, and only letting us know that she didn’t have the cover until we were on our way inside. It worked, though – for years, we paid her way into everything. I had another ex who, instead of telling us she didn’t have money for food, would just choose not to eat, and make a big dramatic show of it. But it worked; we paid for her food more often than not.

But what did those people also do? They also became exes. Because over time, they kept taking without giving. It’s okay if you don’t have the money once in a while, or if you’re up front when you’re invited – “I’d love to go, but I don’t have the money.” or “I’m coming for a few days, but I need to watch my budget when it comes to ordering food.”

The same goes from time, attention, emotional energy. It’s easy to give time to someone when you don’t have a lot going on. If you are asking me to give up time I need to be working on the book; then when I ask you for time during finals week, you better be ready to give it back. If you know you can’t afford to make that sort of sacrifice, then don’t ask someone else to do it for you.

tally

It’s not like you need to keep a tally of who did what for whom when. It’s more of a feeling. You should feel like spending time with your people is a fun, happy, feeding you sort of thing. It’s okay if once in a while, you decide to spend time with someone else because it makes them happy, even if it’s a little inconvenient for you. But if you see your friend calling, and always press “ignore” because you know phone calls with them inevitably last three hours; if you turn down invitations to things you enjoy because someone will be there who will monopolize your time; if you feel guilty posting about a fun night out with a friend because you know you’ll get five nasty emails asking why you had time for that but not for them; it’s time to take a step back and figure out where the problem(s) are.

At the core of it all, though, the one thing you have completely and utterly within your own control, is your own happiness. If you catch yourself thinking, “If so-and-so would only do things differently, I would be happy”, you need to take a moment and rephrase that. “Why is so-and-so doing things that way, and do I necessarily need to engage with them while they do it?” is a start. But really, the better questions are things like, “Okay, regardless of what my calendar says, what would make me happy this weekend?” “Instead of sitting at home, moping about having nothing to do and no one to do it with, I can be researching groups in my area that do stuff I like, or find a party to attend, or call up some friends I haven’t spoken to in a while.” Ask yourself, “What can I do, all by myself, to make this situation better?” If the answer feels difficult, or emotionally challenging, know that you’ve hit a much deeper hole, and it may take some time and attention to fill it, but you can. In a way, you have to. Because if you aren’t the arbiter of your own happiness, then you’re surrendering a level of control over your life; and you’ll still only have yourself to blame if it isn’t making you happy.

Do it. Make a list, right now, either in the comments, on your own blog, on your Facebook/Twitter/Tumblr, or even just on a piece of paper – five things. Five things that would make your life a little happier. A little less stressful. A little more carefree. And it’s okay if these things aren’t inherently fun in and of themselves – “saving up enough money to pay off the car note” doesn’t sound like a lot of fun, but if not having to worry about getting repossessed will make your life happier, then it’s still worth listing.

Then, hold yourself accountable. Each day, ask yourself what you’ve done to make one of those five things come to fruition. You don’t have to do them all in a day, and I’m sure many of them are actually made up of several microsteps of their own. “I brought leftovers to work for lunch, rather than ordering out, and took that $20 and put it in the ‘pay the car note’ fund.”

..and we all know how I feel about awesome metal lunchboxes, right?

..and we all know how I feel about awesome metal lunchboxes, right?

You, my readers, know that ordinarily, I’d post my own as an example. But in this case, some of them are involve other people, and I don’t feel comfortable posting that. But know that I have my own list, and I’m doing this too. And I welcome emails or messages about this exercise, as long as you understand that until my writing deadline is met, I have a limited amount of time I can spend on email (#3 on my list).

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By The Numbers

October 18, 2012 at 8:07 pm (Hospitalizations, Medical, Mental Health) (, , , , , , , , )

12/28: The magical date everyone’s been asking me about. This is the day my panniculectomy is scheduled. I guess 4-6 weeks meant 4 months, but that’s the way the cookie crumbles. I was much slower in reaching certain benchmarks, and we’ve just gotten to the point when it’s prudent to schedule the surgery and hope I reach them by then.

8:30am: The time on Tuesday when the stitch holding my drain pulled. I awoke to a sharp pain at the drain site and immediately knew what was wrong. It’s not surprising: drains are meant to last a few weeks, and this one had been in for exactly two months the day it failed.

3″: Approximately how far the drain “fell out”. It was all tubing, so I just took a deep breath and guided it back in. This turned out to be a mistake.

1hr: The time it took for my general surgeon, who was in charge of the drain, to respond to my email. She’s super awesome and my favorite doctor at Johns Hopkins by far. I called both her work cell and her office and left messages, but decided to email her in case that would be faster. It turned out to be the right call, as she saw it as she was coming out of an early morning surgery and was able to schedule me for an emergency appointment that day.

30ml: The “goal” daily output from the drain that was the benchmark I had to meet to have the drain removed.

60-100ml: Where the average daily output from the drain was when the stitch blew.

5: The number of messages I left with the lead surgeon trying to schedule a date.

50-80%: How much bed rest a day the general surgeon wants me to get. I told her I had just made plans to go out of town for the first time since the hospital stay, and she reluctantly gave me permission as long as I take lots of breaks and lay down at the first sign of pain or discomfort. Honestly, that will be kind of hard where I’m going, but I am going to bring my own chair so at least I know I have a place to sit down if I start to feel bad.

When I get back, I have a few other social engagements I desperately want to participate in, but I’m going to have to take everything one day at a time. Two days after the drain was removed, and I still feel like someone punched me in the gut hard enough to leave a mark. It hurts to walk around. I’m not looking forward to two months of bed rest, but it looks like I don’t have much of a choice.

10min: How long it took my general surgeon to get the lead surgeon’s scheduler to put me on the calendar.

60:1: The odds I give that I’ll actually make it to December 28th before I have to go back to the hospital due to the abscess causing problems. I’m going to try my hardest, as several people are planning to come in from out of town in order to be there for the day of surgery, but I secretly feel that this is going to turn into an emergent situation before then.

So what does this all mean?

Well, now the big fear, and a pretty likely outcome, is that the abscess will regrow. The way it was explained to me, is that the output was still so high because the abscess had become a deflated balloon, and so instead of just collecting fluid within it, it was going straight to the drain. Since the drain had to be removed (it could have been saved if I hadn’t pushed those 3 inches back in, but since I had, we had no way to know if it was in the right position, or if it had been exposed to bacteria – and with my history of infection, it was the better choice not to gamble), that fluid needs to go somewhere. There had been some hope that the wound would stay open and continue to drain for a few days, but it closed up the next day.

I also still have pain at the bottom of my pannus, from the other infected site. The Infectious Disease people are writing off all of my current symptoms – low grade fevers, feeling flu-ish, incredible fatigue, etc – to the infected tissue in my belly. My general surgeon isn’t so sure, but basically they’ve reached a stalemate, as there’s little the general surgeon can do about it.

I had planned to write this Tuesday night when I got home from Johns Hopkins, but I’ve been suffering from major fatigue and pain, and so I ended up making a social media announcement about the date because so many people had been asking. I spent most of today laying in bed in and out of sleep – it’s hard to get long stretches of sleep due to pain.

I’m going to do what I can to try to go to CT this Saturday. All the plans are in place and Rave is doing all my packing in hopes of saving me a few spoons, but honestly I’m having a bit of a brain vs body war over it. I really want to go for a number of reasons – the foremost being that Saturday is my fifth wedding anniversary and the last thing I need is to be home moping about my failed marriage and how frustrated I am with my STBX – but I know it’s not the best choice medically.

I’ve written about these sorts of choices before. If I just go by the numbers, I should stay home every single day between now and the surgery, but that would destroy me mentally. I now live pretty far away from most of my friends, so it’s not like people are just dropping by for a visit. If I want any sort of social stimulation, I’m going to have to go out and get it. I’ve cancelled all of my teaching gigs so I don’t have to worry about obligations or having to be “on”. Most of the social things I’m looking at now are casual enough that if I have to cancel, or modify how I handle them, I can make that call on the day of. Saturday’s a little complicated because it involves other people – the people I’m riding up with, the people I’m sharing a hotel room with, and the people I’ve told I’m going to be there – and although I know all of them would understand if I had to cancel, I don’t want to.

I need my mental health to get through this as much as I need my physical health. If I stay in bed and get lost in streaming videos and social media, even my antidepressants won’t save me from the terrible depression I’ll feel. It’s hard enough hearing about all the fun things my STBX has the money to go and do while I’m worried about each little expense; the loneliness and isolation would drive me over the edge.

Like all good things, I need to find a compromise.

But it’s not as easy as it sounds. As I prepare to grieve the loss of my Beloved Dead this year – two friends and my grandfather – and begin to solidify the end of my marriage, normally my response would be to fill my world with positive and distracting social engagements that remind me that I am still a fun, vital, interesting person worth knowing. However, the more time I spend out of bed and running around, the higher the chances of the abscess needing more intervention, which means time in the hosptial, which obviously means no social engagements.

I also have to struggle with another one of my mental illness issues – the more time I spend at home, the more frightening and overstimulating the outside world becomes. There have been times when I’ve been home for a few weeks, and merely going to a IHOP for a meal feels overwhelming. However, when I see people and go out on a regular basis, the less I’m afraid of random strangers. It’s not logical, but it’s how my brain works. This time around, it’s all aggravated by the paranoia I’m feeling about the social circle(s) I share with my STBX; I feel like I don’t know who I can trust, who I can be honest with, who I can share how I’m really feeling and the dirty details that I’m not making public. I’ve already learned that someone I thought I could turn to has decided to become closer to him, but I only found out when someone I trust told me about this. I feel like I’m surrounded by people I have to be careful around, and only have a handful of confidants that I can relax and say whatever’s on my mind.

I should be happy. I have been incredibly frustrated that I didn’t have a surgery date, so I couldn’t really plan what the next few months were going to look like. Now I have it, but so much is going on, I can’t even take a few moments to feel settled. Instead, I’m just depressed, tired, worried, and slightly agoraphobic. And yet I miss people, specific people but also just being in a crowd of people I can talk to.

Keep your fingers crossed that I’m able to get away this weekend. It will do a lot for my depression, and I am making several contingency plans to take care of myself as best I can. And if you’re interested in coming for a visit, we have lots of room.

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You Get The Choice You Asked For

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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3am

September 9, 2012 at 4:45 am (Death and Dying, Living, Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , )

The hospital, as an organism, never sleeps. In the hallways, it’s perpetually noon with the bright lights and the temperature control. There are people wide awake, doing their jobs like evry other day. They aren’t surprised that you’re awake, crying, holding your abdomen in pain.

They realize it’s time for more pain meds. You sigh a little. They help, at least the IV ones do, but your pain is a seven and your best hope is to get it to a five. You start to feel a little disomfort in your arm, but you don’t really care because your belly hurts worse.

The nurse comes back and starts to push the opiate, but it doesn’t feel right for both of you. Your arm starts to swell, and swell, and burn. She disconnects the highly acidic antibiotic and pulls the IV. She tells you that even at 3am, they can get an IV tech to put in a new line.
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Reality and Fear: Being Disabled and Separated

August 25, 2012 at 9:56 pm (Death and Dying, Disability, Living With Chronic Illness, Mental Health, Uncategorized) (, , , , , , , , , , , , )

This entry is for Winter, who suggested I write something about this.

Being separated when you’re disabled is scary. I mean, being separated is pretty damn tough on anyone, even if they know or suspect that it isn’t permanent. I don’t mean to make myself look like a special snowflake, but I’m feeling like being separated when you entered into the marriage a fairly-healthy individual, and are leaving it chronically ill, presents its own buffet of new and interesting challenges.

My spouse supported me throughout most of the marriage. I made money from time to time, but in such small amounts that there’d be no way I could ever support myself in the real world without someone to pay the bills. I never took applying for disability seriously, mostly because he seemed pretty happy and willing to provide, and he made enough money that my lack of a steady income didn’t hurt us in any way. In hindsight, this was a giant mistake, and I knew it the whole time, but between feeling ill and being terrified of bureaucracy, I made it anyway.

 And here I am, now living at a friend’s place temporarily, trying to figure out how I’m going to afford the future. There’s no question I’m entitled to spousal support/alimony, but we seem to have very different views on what that looks like. I’ve started the lengthy SSDI process, but I figure I can’t even begin to dream about that money for at least a year if not longer. I’m seriously looking at some ways to make pocket change working from home, but in such a way that doesn’t threaten my chances with SSDI.

And it’s not only the money, although sometimes it feels that way because it’s the biggest monster peering out at me. I lost the one person who walked through my whole downward spiral with me – who knew me when I was relatively healthy, and saw all the incremental steps towards chronic illness. I lost a person who cared for me, in a physical sense, in that he massaged my legs when they hurt, and stayed with me in the hospital when I was sick, and who did kind things for me when I was unable to do them for myself. He made me feel as though love could actually be unconditional, at least for a time, as he tried very hard to make me feel bad about my failing health.

However, I would be lying if I didn’t think that my illness didn’t play into how things fell out. I needed him to see reality for what it was – to accept that there was no mythical day coming when I woke up and felt completely well again. I think he chose to start a new relationship behind my back because he needed an escape from ours – a place where he was the one taken care of, rather than doing the caring. I think he needed a pair of arms that made him feel masculine and virile, and for some reason I had been failing him on that account.

On my side, I was frustrated beyond belief that he couldn’t see how much living in one room day in and day out was affecting my mental health. No amount of me begging and pleading for him to find accessible housing – or even somewhere I could make due – encouraged him enough to take any real action. As recent as a few months ago, he was trying to convince me that if I could just stick it out for one more year, then we could buy a house rather than rent and wouldn’t that be better? And yet he didn’t understand when I told him no, that wouldn’t be better. I did want to own our own home, but it was a million times more important to me to live in a house where I could move around safely and without pain. When I walked out of that house, I knew for certain that he still doesn’t understand that.

 But enough about our shit. I want to talk about the challenges of being on my own, and how life is changing, now that I am separated.

 

  • I am terrified for my financial situation. There’s all the regular expenses that one has to deal with, like rent and food and utilities; on top of all that, things like health insurance and my many prescriptions weigh heavily on my mind. For now, I am still figuring things out, and hopefully with the help of an arbiter we can come to an equitable solution.

  • I am coping with the feeling of abandonment, especially during a time where my health has been more of an issue. I’ve both been in more pain and had less mobility, and also feel closer to an answer than I have in the past. Losing the one person who’s been with me since the beginning (and who has stated that they are no longer interested in hearing about anything medical going on, even emergency level things) has been very difficult for me to swallow.

  • Not being in the place where I have grown to feel most comfortable in, which has been my shelter from the world for a very long time, is challenging. It doesn’t help that where I’m staying now (with very open-hearted hosts, mind you) is much further away from all of my regular doctors. So what was once a ten minute trip to see my GP is now an hour long trek, and that’s if traffic is in our favor.

  • I am irrationally afraid that this will start some sort of chain reaction, where my other lovers will somehow come to the realization that being in a relationship with me is more difficult because I am ill. It also makes me fear that I will meet no one else who will ever want a spousal relationship with me, seeing as I am very damaged goods.

  • Through many difficult conversations, I have come to realize that living alone is not a real option for me. Thankfully, I happen to have someone in my life who just also happens to be looking to relocate, and so I was able to come to an arrangement with them about finding somewhere together. However, there’s a little part of me, the part that feels abandoned, that hates that I can’t just strike out on my own and prove that I can survive without him; and I fear that this new arrangement will only serve to highlight how very much I can’t stand on my own two feet. Many people have theorized that the reason he betrayed my trust is because he assumed I was physically incapable of leaving him, and I’m worried that’s in fact the case.

 

That’s about all I feel comfortable sharing with the blogosphere at the moment. Obviously, I have a lot of feelings about the situation in general, and I don’t want to lose the point here. I want to find a way to plumb the depths of this experience and find a way to express how it relates to being a disabled person, a person with a chronic illness, a person who has lost the partner they thought was going to walk the whole road towards death with them.

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