Hanging In There

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

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

“I’m hanging in there.”

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

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

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

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

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

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

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

Too Intimidating?

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

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

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

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

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

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

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

I’m sure you get my drift.

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

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


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Dr. Awesome Saves the Day

December 21, 2012 at 8:03 pm (Hospitalizations, Medical, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , )

This was an odd week, full of really big ups, some pretty scary downs, and a lot of moving in between.

I’ve been somewhat quiet around here (although I have been keeping up with my other blog. Part of it has been that I’ve just had more to say that didn’t fit here, but there’s a lot of layers to it.

As you may recall, I am now in the headlong stretch towards my radical panniculectomy on December 28th. I’ve had my presurgical appointments and test, and now it’s just a big waiting game for the most part. We’ve been running around on the Wiggio I set up for those who are actively participating in the process in some way, trying to settle all the last minute arrangements and details for those who are traveling to be with me before, during, and after the surgery. In that, there has also been significant spiritual set-up and ritual prep, and I’m very lucky to have two priests and two shamans I trust who are handling that side of things with little input from me.

Yesterday was a pretty eventful day, even though that’s not what the calendar said when I woke up in the morning. I had a little pulminologist appointment so he could clear me for surgery, and a plan to go get pedicures with my boyfriend and my girl. Nice, slow, lazy day.

As I got out of bed and starting getting ready to shower, I made a move that didn’t take the drain (currently attached to my abdomen by stitches) into consideration, and felt a shocking amount of acute pain. (My boyfriend was on the phone with his very Christian mother at the time, so although I wanted to express my dismay at this discomfort, I somehow managed only to stammer with my mouth closed and make some pretty exaggerated body language.) After a minute or two, it went from being intense to being bearable, so I decided to go ahead and take the shower. As I stepped into the bathroom, I realized my drain site was bleeding – more than just a few drops, but not a deluge. My panicked brain considered calling 911, but then I remembered they would take me to the rinkydink rural hospital in the town I’m squatting in, rather than Johns Hopkins which is about an hour away. So I took another deep breath, and called for my boyfriend. After we got the bleeding under control with some gauze pads and pressure, I made a slightly less panicked phone call to Dr. Awesome (not her real name, unfortunately) who is the general surgeon who is monitoring my drain. I explained the situation to her voicemail and then sat down for a bit to get myself together.

Forgoing the shower for the wonderful bath wipes I keep on hand for days when showers are too difficult, I was still able to get myself together enough to get to the pulm appointment on time. After wrestling with the poor check-in secretary who had to deal with all the convulutedness that comes with a legal name change (first *and* last, which I guess is much less common and therefore doesn’t have a lot of set protocol around it), all the while nurses are in the waiting room trying to sweep up the glass from a broken sliding window. It takes what seems like way too long, and then they ask me if I have the relevant records from Johns Hopkins. I sigh heavily, as I *know* that both Rave and I called them earlier this week to make absolutely positive that they had them, and we were assured that they had arrived. They had not.

I go back into the examination room, and I hear the doctor talking to the nurse about how really, this appointment is kinda pointless without the records, and maybe we should reschedule. I interrupt to add that although they are important, I’m also here for presurgical clearance for a surgery on the 28th and unless they can reschedule me before then, we might as well do what we can. He comes into the room and introduces himself, and sits down. “So explain this to me, then. What are you here for, exactly.”

I sigh. I am all too used to having a new doctor look at whatever information they have about me and have no idea where to start. I explain, “Well, there are two reasons, and I guess they relate to each other. I’m having a radical panniculectomy on the 28th, and the lead surgeon was adamant that I see a pulminologist to get clearance; in the whole crazyness that lead up to needing the surgery, an accidental lung CT found a small nodule in my lung, and I think he wanted assurance that between that, my apnea, and my weight, that I was healthy enough to endure a long surgery.”

“How big was the nodule?”

“About 6mm.”

“Oh, that’s nothing. Standard practice with something like that is to re-image in six months and then go from there.”

I sigh. I have now heard this three times. I get it. I add, “Well, I guess maybe they’re a little concerned because I also have inactive TB, for which I’m now on INH. But I haven’t had any cough, no bloody sputum, all the signs I’ve been instructed to be on high alert for.”

He shakes his head, confused but somewhat resigned. “Do you have COPD? Emphysema? Asthma?”

“Nope. And I’ve gotten through several surgeries without issue.”

“Okay. Well, since I don’t even have the time I need to do the testing anyway, and you seem like you’re going to do fine, I’ll write the letter. I just don’t understand why he didn’t send you to a Johns Hopkins doctor.”

“Well, I tried calling, but none of them had any availability until March; even when I told them my surgery was in December.”

Anyway, you get the drift. He made me a follow up appointment to deal with the nodule after surgery.

Afterwards, I was able to secure an emergency appointment with Dr. Awesome for Friday. Still a little woozy from the surge of adrenaline, I decided the three of us (Rave, Alex, and I) would go down to the pedicure place where we had an appointment as a sort of pre-surgery relaxation thing. I almost cancelled it, because I was feeling kind out of it, but decided to push ahead. It turned out to be a really good idea, especially since Rave had never experienced a pedicure before, and watching her face as they took out the various tools was delightful. We ended the day with dinner at my favorite diner.

Today, I saw Dr. Awesome and it was a really good and calming appointment. She assured me that some of the irregularities about my surgery that I saw on the 14th had been cleared up, namely that it was posted as an inpatient, rather than outpatient surgery (oops) and that they had a bed for me in ICU. She threw two extra stitches into my drain to keep it secure, since I only have to have it for another week anyway. Then she sat with me and talked, about the ragey way Dr. Sacks had spoken to me the week before, and answered some of my questions about surgery and afterwards in a much more calm, collected, and caring way. Before I left, I told her my nickname for her was “Dr. Awesome”, and she blushed.

This weekend looks to be a nice one. We are still in high gear in getting the house ready both for visitors prior to surgery, as well as starting packing since we should be moving pretty soon. We’re also going to be stepping up the house looking stuff, since we’ve only been able to see a few places and none of them have worked out one way or the other.

I will try to write one last entry before surgery, but if I go dark for a week or two, you’ll know why.

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Bound and Unbound

May 16, 2012 at 3:06 pm (Death and Dying, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , )

What we Westerners have come to know as “Enlightenment”, a state of union with All That Is, can also be translated into English as “Unbinding”, disconnecting the self from all that holds it back from communing with the Universe at large. It is important to note that there is a distinct difference between loving something and being attached to it. Attachment comes from the fear of loss; we desperately cling to something because it feels like it is valuable and somehow that adds to our own sense of value. Love is ephemeral and, when applied correctly, comes with few or no real attachments. So unbinding ourselves from the attachments of this world means losing our fear and seeing our value as intrinsic, rather than based on the things that we own, the places we frequent, or the people we surround ourselves with.

Pagans have conceptions around the word “bind”. We think of a binding spell or working as something done to keep someone from engaging in maladaptive or destructive behaviors. We bind people whose magickal decisions we disagree with. We bind politicians who fight to silence us. We bind the visions of the past to keep them from tainting our future. It is an ending, a banishment, the making of an outcast. When I have a bad breakup, I bind the ex from influencing my future in any but the most positive ways. (No, it doesn’t always work.)

We also spend a lot of time “grounding”, binding our energies to the Earth. People who seem focused, centered, and in the moment are said to be grounded. We think of those who are too open energetically, unfocused, vulnerable, and slightly disassociated as being in need of grounding. People tend to ground after a ritual or other ecstatic experience. We value an attachment to the Earth; it makes us feel purposeful and connected to the flow of energy that comes from it. However, this can also work against us. Those who are too “earth bound” tend not to be open to visions, or to work magick, or to influence the flow of Wyrd. “Block heads” (a terrible term, but one that is used in my local community) lack the ability to experience possession, and that is sometimes due to an over-attachment to their bodies, or being too tightly tied to the Earth.

So it was with an interested eye that I thought of this concept, this idea that Enlightenment=Unbinding. And as I wrestled with this idea and this entry, more and more facets of it came to light. It makes perfect sense to me that Buddha would see that a sense of complete non-attachment is equal to achieving the highest state of spiritual bliss and insight.

As I think about dying, I look at the attachments I have that I am wary of losing. There are aspects of life that I am definitely not finished with and will be quite sad about if they are radically different once I am no longer bound to a meatsack. Most of my attachments are in the shape of relationships and sensations; and then, I look a little deeper, and I see the Gods stripping these things away already, in slow and careful strokes so as to not arouse my suspicion. It was only as I started looking into this whole idea of Unbinding that it became clear to me. I do not feel as though my fear is being worked away from me, however; I do fear losing these things, but I do not feel stronger when they are gone. I mourn them, all the time, and I do not feel whole now that they are gone.

It started with my birth family. Over time, I have grown further and further away from them. I probably only see my mother once a year, if that, and my sister less, and my brothers even less than that. My half brother I now only see at family functions so laden with expectation that for one or both of us to skip it would be taken as some sort of statement (like my grandfather’s funeral). Now, they are like fictitious characters that I interact with in a very conceptual way; I speak to my mother on the phone, I read my sister’s Facebook updates. But really, they are voices and words; and they only see the parts of me that fit into a short conversation or a 140 character update.

Then my social circle shrank from feeling quite expansive to very intimate. Granted, I “know” a lot of people, but very few of them actually make the effort of spending time with me in the flesh or even in something slightly more intimate than reading a blog entry written for the general public. I can probably count on two hands the people I see between big events on anything resembling a regular basis. Now, I know some of this is me, and my body dictating my calendar; some of it is also that I have become much the introvert as time has gone on. I rarely go to big social functions out of any sense of community obligation anymore; I go if I feel like going or if there is a specific reason to be there.

As for my intimates, I remember somewhat fondly when I had so many “date nights” that I yearned for a simple “laundry night”; now I sit at home while Ninja goes out with his girlfriend or to a game night. The only relationships that are local enough for in-person time are Ninja and Rave, and both of them have active lives and other loves (or potential other loves) to spend time with as well. I have two long distance relationships, but rarely do I get any real intimate time with either of them unless it’s so orchestrated it’s practically rehearsed.

So I look and see my attachments to people slowly fade away. I make silly, sad comments to Ninja all the time about how I think a month after I am dead, people will likely barely remember anything good about me at all. He tells me I am wrong, but I have seen other people in my social circle die and fade into the ether. And there’s part of me that thinks that’s the right thing to happen. One person I can think of who died was practically trapped on Earth in spirit form after hir death because hir people kept “remembering” hir over and over again. Sometimes unbinding is an important step. Sometimes unbinding leads to ascension.

Then tonight, while once again I watched Ninja eat something made with chocolate and gluten and think, “What do I have left, in terms of sensations?” I remember when I was a smoker, I would tell people that I smoked because I was a hedonist, and it was more important to me to die having experienced the good sensations in life than to live a longer life without them. Not that I want to take up smoking again, but this moment of craving made me think hard about the sensations I have left. Some of the things that are gone are better off gone: I’m pretty proud of having quit smoking, but it’s not something I’d like to do again. Of all the “bad” choices I can make, not smoking is pretty easy. But now I have lost two things that are key to my enjoyment of having a body, and I don’t know how to fix it.

The first I have lost by choice. I’m doing this paleo-esque diet because someone I trust has said that they think good things will come of it. I’ll say this much: I have not seen a reduction in weight, or blood sugar numbers, or pain, or fatigue, at all. Now, it may be that the intersection of this diet and me needing surgery was unfortunate, but I also tried acupuncture while detoxing off of fentanyl, so it’s not like I can create three medically uncomplicated months in order to try a different approach. And there’s plenty about this diet that is easy for me: I don’t miss most grains, although rice would be nice to have once in a great while. What I miss is decadence – and for me, that is very closely tied to sugar. The few times I have cheated on this diet, it has been not for cheese or bread or potatoes, but for sugar. I have not had the experience of losing my taste for sweet things; if anything, I feel acutely aware of that lack all of the time. And not just went Ninja noms some chocolate donuts; I dream about eating ice cream. I literally broke down and cried I wanted a milkshake so badly. I went to my favorite diner and stared at the dessert case, fantasizing about ordering two or three different things all at once.

Whatever makes you happy, kid.

I’m a fat kid. Food has been there for me when nothing else has. When I was poor, I couldn’t have comfortable clothes or bright, shiny toys or even a functional bike; what I could have was three ice cream sandwiches, if I quietly took them from the freezer when no one was looking. I could have as many of those terrible frozen pizzas we’d get in bulk from some wholesaler or donation place. As I have grown older, I recognize that sometimes I eat for the “wrong” reasons, but we all do things for the “wrong” reasons.

The other thing I have lost is sex. This didn’t leave by choice; it snuck out the back door and left me a note saying it would be home in a few days, but never returned. It started when I lost my libido. A combination of pain, fatigue, and dysphoria made sex complicated, and no one likes complicated sex. So for about six to eight months, I could care less; I thought that was terrible. But then it got worse.

My drive came back, but things in my relationships had adapted to me not wanting so much of the sex, and trying to get things back on track have proved, uh, challenging. I’ll be forthcoming and say that right now, it’s been almost two years since I’ve had any sort of sexual activity where my hitachi wasn’t the focus. And that is much worse than not wanting it, because at least when I didn’t want it, I still got messages from lovers and the Universe that I was sexy and desirable. Now I feel invisible and forgotten and I don’t know how to fix it. I have tried to radically accept my relationships the way they are, but at the same time I can’t force my girlfriend, who would oblige me in a heartbeat, to suddenly drive nine hours, abandoning her wife and children, so she can come fuck me silly for a week. Nor my partner, with whom I’ve never had much of a physical relationship with, suddenly decide to change his decision making process where he puts me nearer the top of his priorities.  And my poor spouse, who suffered the most when I dried up, is now having his own struggles; I can’t show him any less compassion than he showed me.

I look at my day to day existence and I’m kinda foggy on why having a body is a good thing anymore. I don’t get to use it for the things that bring me pleasure at all, and I’m not really interested in trying to find new ways to evoke those feelings. I know, I know, some people find solace in vigorous exersize or fasting, but neither of those are really options for me. I spend more and more time in disassociative states, through meditation and watching television and generally having a dissociative disorder. I disconnect from being a meatsack, unbind myself from being grounded, and yet I feel no closer to being Enlightened.

What attachments do I have left? What do I fear? I have been watching two different portrayals of men who, upon learning of their cancer diagnosis, make interesting, wild life choices to make up for the doldrums of existence up until then. (Breaking Bad is one example; the other is the last few episodes of House, MD.) How can I let loose, go wild, celebrate the fact that I’m still alive? I can’t go eat the food I want, or fuck the people I want, or spend the money I don’t have, or rent a car and drive aimlessly away from all of my obligations. And worse yet, I don’t have the convenience of a clear diagnosis to explain my behavior anyway. (I do think I might be able to pull some of that off if I could say, “I have cancer” or “I have AIDS”.) Not that I want these things, per se, but having a diagnosis unbinds you from the expectations of the living, and frees you onto the plain of the maybe-dying. I get to be grounded; Ninja won’t even let me talk about dying with him, much less try to convince him to add crazy adventures into our lives under the pretense that I don’t have many more days where leaving the house and doing crazy things are an option. The predictions for my future are pretty dire.

I stand at a rather complex crossroad. I have an intense, heart-gripping crush on someone, but I haven’t told them for a number of reasons; one of which is because I don’t know if starting a new relationship is the kind thing to do to someone. My diet choices are my own, and I can say Bugger Off and go eat a Vermonster, but it’s not like the plan set before me made no sense – it does , and is sensible, and has a lot of merit. I just don’t like it very much. I could resign myself to no more sex in this lifetime – just take it off the table so I stop thinking about it altogether – but someone would have to communicate this to my hormones and my genitals so they stop asking. (I now think I know what it’s like to be a young boy experiencing erections outside of his control, because my body doesn’t know the appropriate time to remind me that sex is fun, so it happens at the weirdest moments, like during a life insurance ad.) I could dive in, retie myself to living life, and risk more attachments; or I can fly out, move away, and detach and remove until there’s nothing left at all. Neither sound like the right choice, but I don’t see much middle ground, either.

In some ways, I feel very unbound. I see lots of things I used to feel very attached to, whose presence in my life defined who I was and what I was here for, taken away or having been given up. I have very few actual ties; other than friends who might miss my presence, I could disappear tomorrow and the hole left wouldn’t be all that big. Already in my life have I literally left everything I owned and everyone I knew behind and started on another journey; I know I have the strength to do it again if it is asked of me. When I was told that I do not have much time left to breathe air and dance around fires, I knew that part of the reason I was given that information in advance was so I could disentangle myself slowly, prepare myself for my departure, which is actually something that brings me great comfort.

At the same time, I am completely bound to this plane. I have big plans for the next year, including three book projects, a super secret project that I really hope falls into place, some kick ass teaching opportunities, and other life experiences that I feel very connected to. I have unresolved business in the form of relationships that need tending, and exploring, and finding that sweet spot of interdependence that brings me joy and pleasure. I have much to teach, not only the general public, but my apprentices and students and others. I know that I need to leave a very big legacy; ways for people to access my voice for years to come.

I have been accused of being Enlightened. I am, at my core, a deeply spiritual person of faith. My faith is one of the most important parts of my life, if not the most important. I see the interconnectedness of many things that others do not, and that vision gives me insights that others crave. I am blessed to have a fairly clear and accurate “god phone” (two way communication with Gods and Spirits) that I use to facilitate others having a better, more deeply rooted experience of their own spirituality. Other people have used words like Guru and Bodhisattva to describe me; inside, I think of myself as a fellow journeyer who happens to have a better map than some – and not even the best map, or Gods forbid, GPS. I use the words Shaman and Spirit Worker because Loki told me that I had to; I had to use words others understood so clients could find me. (“Shaman” still sometimes rubs me the wrong way, and sometimes I wish I could use a more traditionally Norse word for the job instead; however, I work with clients who worship all sorts of Deities.)

I have also been accused of, spiritually, not knowing my ass from my elbow. That my insights are not all that earthshattering, and my practices can be dangerous. Heck, there is even one detractor who thinks I’m a sociopathic predator who seeks out impressionable people to turn into sex slaves. (I am not exaggerating.) I work extremely hard to remain humble, and to emphasize to those who idolize me that I am merely a meatsack just like they are. I work closely with Hanuman to remind myself that the servant is as holy as the king, and most of the time moreso. I know I get lost sometimes, and think that I know the right answer or have the only right opinion, but the Universe is pretty swift at kicking me in the asshole when I do.

So all this leaves me to wonder where I really am in this journey of Unbinding, of Enlightenment, of really seeing All That Is in a way that my head organ meat can understand. I don’t know if giving up everything that is perceived as unhealthy to my body has done me much good overall. I am still confused as to whether I’m actually as prepared for what lies ahead for me, both physically and spiritually, as I think I am. Heck, sometimes I can barely figure out what time it is. But I accept that this is an ongoing process, and the process is sacred. The process is the Work; the products of that process don’t matter as much. We get too attached to the end results, and overlook the holiness of liminality. And it’s in those spaces where the real insights that matter are found.

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