Sick/Not Sick: Illness is Not Identity
I am sick. 
It’s a factor in my every day life. I woke up this morning and the first thing that happened was that my arm twitched; that is, it moved about six inches in a swift jerk and then returned to its prior position. I sat up and felt the muscles in my legs cry out in pain. I pulled myself up and out of bed and took very hesitant, slow steps to the bathroom, and my sense of balance was off. I woke up feeling tired and unfocused. My joints hurt and if someone called me up today and invited me to go for a walk or something I’d turn them down.
It’s also something that a lot of people know about me. I blog about my illness, I talk about it, I work it into my classes when it’s appropriate. For some people, it’s the one thing they know about me. They may not remember where I’m from, or who my partners are, but they remember that I suffer from significant health challenges. I have friends that I won’t hear from for ages, but when I post that I’m in the hospital again, they will send me well wishes. It makes me feel like I only exist in their world when I need their prayer. Like being sick is the only time I matter.
The concept of Del-as-sick-person is pervasive. This year, I’ve had to fight with two different employers to keep them from cutting back my commitments because of my challenges with wellness; these situations happened even though I wasn’t the one who introduced the idea that I may need someone else to limit me, to make sure I’m not overcommitting myself. I have friends who offer help in ways that makes me raise my eyebrows: there are plenty of things I am fully capable of doing on my own, and it’s of the utmost importance to me that I continue to do them as much as possible.
Now, this is as much my fault as anyone else’s. I’m the one who decided to write a blog focused on disability and chronic illness, and since most of my social contact happens online, it’s the only thing many of my friends hear about my life. They don’t hear the stuff that isn’t germane to this blog, unless maybe they read my Facebook statuses from time to time. In an odd way, I havebecome Dying for a Diagnosis, to some.
This experience is not mine alone. Many people who suffer from a chronic illness or disability find that their identity in other people’s minds (and maybe even their own!) starts to meld with the illness. We become “that aunt with fibro” or “the next door neighbor with MS”. As if we didn’t have an illness, we’d be a faceless member of the human mob that no one notices. This becomes much more prominent when you start using mobility assistance; I know I became “that guy in the wheelchair” pretty damn fast once I started using it in public; and I don’t even use it all the time!
I am not sick.
There is so much about me that functions perfectly fine. Even though I have some cognitive challenges, I am still able to participate in heavy conversation. I am still able to write clearly and concisely. I have a wicked sense of humor. I am still able to discharge most of my shamanic duties/obligations. I can still get my freak on. I still attend rituals and participate as appropriate. There is a depth and breadth to human existence that I am still a full participant in. And I do my very best to make sure I dive into those human experiences with both feet and a whole body, not to surrender and hide and wait to die.
There are times, mind you, where this “diving” hurts like hell. But I live with a general refusal to allow my pain to dictate the sole terms of my life. In a similar fashion, I do not wish to be fully defined by the fact that my body doesn’t process “life” the same way someone who doesn’t suffer from chronic illness does. I don’t want my eulogy to be “Del was sick, Del suffered, and Del died.” I want there to be crazy stories of adventure – risks taken, challenges accepted, art created, words weaved, etc. I want to be known for all the things I pushed myself to do, all the wild and wonderful situations I created for myself. I want people to remember me as the person who was there for them, who walked next to them when they were scared, or alone, or confused, or seeking a new lot in life. I want people to think of me as being a good and whole Del, not a broken and mangled one.
I know it sounds all PC, but that to me is the difference between “disabled person” and “person with a disability”. One is a definition: “Del is a disabled person.” It attempts to sum up all of my embodied experience in a single descriptor. However, “Del is a person who happens to be disabled” states my personhood first and foremost. It’s like the sentence can go on from there, “…and who also plays the trumpet.” or ” and who gives the best advice” or “and also worships Loki”. There are lots of other details about who I am that have nothing to do with being sick.
It’s of vital importance that I set the precedent here. That I do not allow my illness to define me. I must remember to not lead with it, to add it as one more flavor in the Del stew. The fact that I struggle with my health is a pretty big proportional part of what I do with my time, but it is not a big part of who I am. There’s a world of difference.
Holding Vigil
The entry before this one, “A Desperate Prayer”, is about my friend Jon. He is currently in the ICU at UMass.’
He was found on Monday afternoon unconscious and unresponsive. He was rushed to a local hospital, who quickly acertained that he needed more care than they could provide, and he was then transferred to UMass. The people he was living with found his mother, since ICU is blood-family-only, and got her to Massachusetts. Luckily, Jon was staying with a clergy person, and this clergy person has been able to go and pray over Jon. Also, Jon’s mother has been very open with the clergy person, and has been keeping us in the loop.
I don’t want to go into a lot of details here, but I will say that the cause seems to be a drug overdose/interaction. (Edited to add: This has been brought into question, and I will admit my information is third hand at best.) It is unclear if this was purposeful or accidental. He is young (27), but his health was compromised. He contracted an infection in the hospital, so on top of the coma he’s been running a fever.
Jon is a Hel’s son; relating to Deity as an offspring is something we have in common. We frequently talked about being “children in a spouse world”, since most of our friends are Godspouses or Godslaves. He is heavily modified; including a cutting on the small of his back that I augmented and helped ash. He underwent an annual hook suspension for Hel; I kept promising that one of these years I would facilitate it.
He spoke with a child-like lisp and generally carries himself with a lilt. He would playfully hit on me, but only when I was packing. I let him touch it once. He is adorably affectionate with those he loves, and rarely turns down attention. He is, in turns, deeply attentive and serious about his spirituality, and scarily unconcerned about the future. He is functionally allergic to planning ahead.
Jon has a beautiful tattoo to Mani on the back of his skull. He has a romantic relationship with Mani, and it is definitely mutual. When he speaks about Mani, his whole face lights up.
It is pretty certain that Jon will never wake up. If, by some miracle, he does, he will be severely disabled for life. Every day that passes, lowers his chances of survival. Tomorrow is either day four or six; we’re not sure how long he was unconscious before he was found.
I am keeping my schedule generally flexible so I can go to Massachusetts when it is time. I have asked to be a part of any rituals that are held in his honor or on his behalf. I admit, I’m not feeling optimistic at all. In an odd way, I feel like letting him go peacefully and quietly is the right choice, but it’s not my choice to make. All I can do is wait for the phone call. I have a candle flickering in the background; I prayed hard over it and asked Hel to use its light to guide him in the right direction, wherever that may lead.
Please pray for Jon, and for Jon’s mother. I can’t imagine what it must be like to know that your child’s life is functionally over, and all that’s left is to turn off a machine. I don’t blame her for taking her time, for looking for hope, for taking everything as a positive omen. But on the other hand, my heart tells me he wants to go. If you are friends with Jon, and this is the first you are hearing about this, please comment and I will send you full details via email.
A Desperate Prayer
Lady of the Final Breath, Who Straddles the Line between Flesh and Rot, Never Fully Alive Nor Dead, The Gatherer of the Straw Death, Daughter to Loki and Angrboda, I ask you to listen to my fervent prayer to you.
As he lay dying, I know his fate is in your hands. There is nothing anyone can do to make him choose life or death, nor would we want to. I accept that his life has been trying and he used inappropriate methods of escaping that hardship, which is unpleasing to You. If it’s one thing I’ve learned from You, is that Tools Have Purposes, and that using a tool for something other than its intended purpose is either genius or folly, but rarely anything in between.
I do not ask for clemency, as I know You would only laugh. I ask for gentleness and swiftness. Whatever he decides the best outcome to be, I ask you to bring it without delay, with as little suffering as possible. Should he choose to live, let it be joyous and bring about a new vision and vigor towards the flesh experience; if not, let his departure be painless and quiet, with only as much pain as necessary. Take him into Your arms and let him know he did his best, even in his mistakes, only his best.
I miss him. I hate to think I will never see him again, so it’s very hard for me to remain impartial. But it’s You who gives me my clinical detachment, You who taught me that rotting meat is rotting meat, whether animated or not, and that death is sacred, even when it’s hard to see the specific kind of death one is dealt as such. I admit, it is very hard for me to see this as sacred. Please, if there is a way to embrace it, show me the way.
Jon,
I miss you so much, and am terrified. Please make your choice in your own time, but know that we are worried sick about you and hope that whatever happens, it is for the best. We will do our damndest for you, no matter what. If you can use my help in making your choice, I invite you to visit me in your liminal state, and I will do my best by you as always.
So Mote It Be
.
Image copyright Robin M Weare.
Bound and Unbound
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.
Pushing the Limits
I am, at heart, a pusher of limits. If you tell me I (or you) can’t do something, I am literally obsessed with finding a way to make it possible. This may sound like a mostly positive thing, but as one may expect there are times when pushing a limit means falling off the cliff hidden behind it.
I did an image search for “pusher of limits” and this was one of the first images in the results. I’m not sure my Pusher of Limits looks like Grover, but I just couldn’t resist.
Things have been a little challenging for me lately, as evidenced by the fact that I haven’t updated the blog since April 18th. I’m very sorry about that; I am trying very hard to make at least one post a week, but as the warmer weather defrosts my schedule, my responsibilities as a traveling educator start to eat up what little post-surgical spoons I may have had lying around. Not only was I teaching classes at the event, I facilitated a very intense ordeal. So intense, in fact, that several of those close to me pulled me aside beforehand and very seriously asked me if I was physically up for the demands of what I knew (and didn’t know) would be expected of my corpus habitus.
Pusher-of-Limits said, “I can do this. I will make it work.” Saner-Voice took steps to try to reduce the impact on my body.
Now that the event is over, and the season of events has begun in earnest, I’m seriously taking stock of where my health and my desires intersect. Pusher-of-Limits keeps telling me that nothing has to change, that I can continue to travel and go to camping events forever. Saner-Voice and Corpus Habitus disagree.
I turned to Ninja the first night I was at Ramblewood (a campground that hosts several alt sex/spirituality events during the summer) and said, “I shouldn’t be here. I can’t hack this. I need to rethink some stuff.”
I won’t lie. Even with having a personal golf cart, and two service people plus my spouse and friends who don’t mind lending a hand, it was fucking hard. I was frequently in pain, even if I didn’t show it. My incision, which is still healing (but doing nicely) hurt like a mo’fo most of the time. I didn’t get to do or see as much as I would have liked, spending heaps of time in bed with my Nook banking spoons for my obligations. I did get to have a little fun, but it was short and sweet and sporadic.
Wanna know a secret? I am scared to death that I can’t do this anymore. I was scared every moment that I was there that something would go wrong, that I’d be rushed to the emergency room in a strange place and have to find a way to explain why I was at a campground three weeks after surgery. I am terrified that the level of ability I have now is dwindling, and each event I attend I have a moment of “This may be the last time I can do this event.”
Doing these events for me is “being with the people”. I spend so, so much time in isolation, sometimes only seeing my spouse and my slave for weeks at a time. Other than doctor’s appointments, I rarely go out just for fun, and three times out of four I have to cancel because I feel like crap. The artifice of “obligation” that comes with being a presenter for events helps motivate me when really, if it were just another social outlet, I’d likely cancel. Even while at the event, there are times that twenty minutes before class time, I’m in my bed desperately summoning spoons so I can just get through the next ninety.
So it was with great trepidation that I saw Dr. WLS yesterday. I knew my drain had been very active while I was away, and my scar was aching at a pretty intense level. I honestly don’t know if he’s just so focused on ending our relationship that he wasn’t concerned, or if I’m really doing better than I think, but he “advanced” my drain (moved the tubing out about three inches) which is a step towards having it removed. He looked at my scar and said it was healing very well and didn’t look infected at all.
Today, the limit pushing is a different one. Now that I’ve realized Dying for A Diagnosis, and have a general feel for the difference between blogging and journalling, I’m seriously thinking about starting a second project, where I can talk about spirit work/shamanism and ordeal/kink, which only sometimes is appropriate for what this blog is for. I need to figure out if I have enough writing spoons to take on this new blog without neglecting this one. Baphomet is skeptical; if it were up to Hir, this would be my focus and I’d write in here every day, pumping out as much content on chronic illness and spirituality as I possibly can before I die.
I am aware, as I ponder this, that DfaD is more than a blog. It’s a devotional act, a very important vehicle of communication for those who feel vested in my health, and a meaningful tome for those who suffer from chronic illness and need to hear our stories told in honesty and truth. I need to evaluate my reasons for wanting this other blog, and what commitments I can make to it while still striving to post here at least once a week as health provides. There are a plethora of blogs about shamanism and ordeal/kink, but not as many about the spiritual experience of dying.
Can I push my limits a little further? Or is it time for Saner Voice to rule?
I made a promise, and sealed it with death. I will live up to my promise first and foremost, and will not shake the responsibility You have put on my shoulders and in my heart. Hail Baphomet! Rex Mundi!
Breathing in, Breathing Out: Tonglen
There are two topics that have been vying for blog post-dom, and then I realized that maybe they can coexist in a single post. One is how I use the meditative practice of tonglen to help deal with my health issues, and the other is how I struggle with well-meaning people who think I don’t know how to google. I know, it doesn’t sound like they can be the same post, and it may take some literary magic on my part, but let’s give it a try.
First, I should explain what tonglen is. Most Pagans, when utilizing meditation as a way to deal with stressful things, visualize that the in-breath is the inhalation of that which is good/useful/healing for the situation, and the out breath is the exhalation of that which is unwanted/bad/hurtful for the situation. Breathe in relaxation, breathe out stress. Sound familiar?
Tonglen, a Buddhist practice, looks at this practice and sees that it’s kinda backwards. Sure, it works in the visual sense, but not in the physical sense. When someone is inhaling, their muscles are tensing as their body adjusts to the action of the intake. Breathing in, in this fashion, is an action. In comparison, when someone is exhaling, their muscles are relaxing as their body returns to a base state. Breathing out is a reaction to breathing in. Do it now – take a deep breath in, and then let it out. After which one do you feel more relaxed, more at peace, in general, better?
So when practicing tonglen, on the in breath you think about all the people, places, and things that have experienced the same frustration, pain, or stress that you are dealing with. I breathe in, and I think about all the people who are at home right now trying to recover from surgery but real life keeps getting in the way. I hold the breath for a moment, to give myself the freedom to really feel the frustration and pain not only of my own situation, but multiplied by all the other people on the planet who feel the same way. Then, on the out breath, I send love and patience and healing to everyone I am sharing this experience with, including myself. After all, I am a subsect of “all the people struggling with recovering from surgery”.
I find this helps me in a lot of ways. It reminds me that there is no human experience that is not shared. No matter how much I feel isolated because of my complicated medical situation, I know that it’s statistically impossible that I am the only person on the whole planet who is as medically complicated as I am, and I bet there are many who are worse off. So before I even begin the actual practice, just the thinking that leads to it is useful. I am not alone, and people have survived this situation before.
Then I breathe in, and I really allow that sensation of frustration to tense my muscles, to contort my body in whatever way will give me the most focus on how yucky it feels, and how terrible it must feel to all the other people who are suffering in the same way I am. I give myself permission to feel bad about it, to feel a little sorry for myself, to fully engage in my emotions.
And then I let go.
My body relaxes. I cultivate love and patience for other people (which is usually much easier than doing so for one’s self), and then slowly apply that same love and patience inward. The more I breathe, the more relaxation I feel. The less tension I feel on the in breath. The more I feel like I am connected with a band of strong, inspiring people who struggle in the same way I do.
I practiced a lot of tonglen in the hospital. In – I think about all the people who are waiting in this ER, who have been here as long or longer than I have . Out – I send them patience and ease as they get the best possible outcome for their emergency. In – Many people are frustrated at their nurse, who is slow to respond and has her own agenda. Out – I send love to both those who lie in wait for care, and to the nurses who are having a bad day due to inpatient patients.
It is invaluable to me when I get totally overwhelmed by all the medical shit that’s been going on for me. I was just telling a friend that if you had told me six months ago that I was in the calm before the storm, I would have laughed at you. You mean having inactive TB and dealing with a new neurologist is the “calm” time? Right. Now things have grown so exponentially more difficult and complex, I can barely make it through the day without crying.
When I get frustrated, I frequently post to Facebook, or to my blog. As I’ve discussed before, my friends and readers want desperately to feel of use, to do or say something that might help the situation. The current favorite is to tell me to report Dr. WLS to “the medical boards”. They post links that take a few minutes of googling to find. I breathe in, because I, too, have google and have looked at those same pages, usually before you post them. I breathe out, because I know that they did that because they love me and want me to be happy and well. But what I can’t seem to communicate effectively is that my medical situation is a big tangled web, and the only person who really knows how it all works is me. I’m willing to share it with someone who really wants in, but being in means a lot more than reading my blog and trading a few emails. It means going with me to the doctor’s appointments to hear what they’re saying. It means personally understanding what it’s like to have doctor’s appointments three days a week when you don’t drive, and most of them would cost more than $50 by taxi. It means understanding that I, too, have Google, and do actually spend time researching things like where to effectively complain about Dr. WLS.
You'd think this is an exaggeration, but replace Blondie here with a fuzzy haired Del and it's about accurate, books and all.
I breathe in for all those who hate Dr. WLS for what he’s done to me, and I breathe out patience. Yes, technically I could probably seek out another surgeon to take over my aftercare. But they aren’t the surgeon who performed the surgery, and therefore they’d be relying on whatever Dr. WLS tells them (and not me, because I am not a surgeon). This is what I was told when I cold-called another general surgeon about possibly being seen as a ‘second opinion’. Starting from scratch with a brand new doctor in any situation is difficult, and I know this because I’ve seen five different neurologists, two different infectious disease doctors, two different primary care physicians, etc. So in the end, I choose to get frustrated and abused by Dr. WLS then go through the rigamarole of seeking out a different surgeon. If this means you’d like me to stop complaining about him, because it’s my choice to see him, then I will.
I try to illustrate my current medical situation this way: Imagine a Del. Now imagine over the Del’s head are a series of balloons. Each one represents one of the medical situations I’m currently facing. One balloon says, “Emergency ab surgery/recovery/scar in a place on the body under a lot of stress/too much edema”. Another balloon says, “Unexplained chronic pain”. Another says, “Needs a D&C and ablation or could get cancer.” Another one is labeled “Has inactive TB, which could go active at any moment, and really the only organ we know how to help if it gets attacked is the lungs. Also, you have a history of infection, so it’s likely to go active.”
Kinda like this.
For any one person, this balloon (pick one) would be their entire existence. They would be focusing all of their free time on researching what to do, contacting doctors, going to doctor’s appointments, taking whatever treatments are prescribed, and changing their lifestyle to accommodate this balloon. I don’t have that luxury. I have too many balloons, so many that they’re threatening to carry me away to a place called Death. I’m doing as much as I can to keep up, without forgetting that I’m also a human being that needs to eat and sleep and spend time with friends and watch Glee and feel normal from time to time.
Maybe you’d handle it differently. Maybe you’d go all gangbusters and spend every waking minute doing whatever it takes. I can’t, because I feel like crap and I’m tired all the time and I’m in a lot of pain and there’s only so many kinds of effort I can give before I can’t anymore. In the end, it’s my body and my life and I have to do with it what I think is right, and many times I choose the “feel like a normal human being” over the “holy crap balloons”. On average, I have at least one doctor’s appointment a week (these days, it’s closer to two or three). I make at least six phone calls, emails, or other forms of contact dealing with my medical situation a day. I spend an hour or two with Google, looking related tI hings up (everything from who to send the complaint letter to about Dr. WLS that will actually matter, to how other people dealing with chronic pain cope with the added discomfort of surgical pain, to how long I can put off that D&C until I’m really risking cancer).
But for now, I will breathe in all of your frustrations, all of your desires to be of use, and to be helpful, and the feeling I know intimately of seeing someone you care about suffer and know there is nothing you can do. I breathe out love, and patience, and compassion, and understanding. I do love all of you, even when you drive me a little bonkers.
The Dreaded Follow Up
I saw Dr. WLS for my first post-op appointment yesterday. It was just about as bad as I expected. I have witnesses who will tell you it wasn’t horrible, but there were lots of questions and innuendos that I could have happily lived without.
I have many friends who live in disbelief that this guy, who already knows that I was denied WLS by my insurance once, is still pressuring me to get the surgery. As I waited for his assistant in the room, the Jaguar (my trainer/nutritionist) examined the poster with the various surgical options on it – the Roux En Y, the lap band procedure, the the gastric sleeve, and the duodendal switch – and even on the poster it listed the various deficiencies one has to deal with for life if one chooses that surgery. They all thrive on malnutrition. There are no long term studies on the effectiveness, or on how they impact other health factors. Some of the mid-term studies that are coming out now show that over 50% of WLS patients regain some or all of the weight due to restretching the pouch/sleeve. Many patients do not adapt to the lifestyle that comes with having the surgery, because they were so pressured into it that they never considered what life would be like five years down the line. It’s one thing to commit to a lifestyle change in the present, but it’s a whole different animal to learn that there’s no “giving up” if you don’t like it, if you don’t like the new you, if you don’t like how it changes your life.
Now, I know I have many friends for whom this surgery changed their life in a positive way, and I mean them no disrespect. I believe WLS is an incredibly personal decision, like any sort of body modification, and you shouldn’t be bullied, pressured, or otherwise pushed into having it, or even considering it, if that’s not what you want to do to your body. I feel like the treatment I have received from Dr. WLS is as though someone was standing there in front of a trans man telling him, “You won’t truly be a man until you lop your breasts off. You’ll never pass, no one will ever see you as a man, you won’t be able to live a full and meaningful life if you don’t have a masectomy right now.”
I can carve you up like an ice sculpture!
Do I feel that being obese (even morbidly so) is a good thing? I think it’s just a thing. We all have unhealthy things in our lives. Some of these things could be solved by surgery. Many of my friends have hernias that they’ve suffered with for years, but since they aren’t emergent, they haven’t had the operation. At any moment, my appendix could go rogue and explode on me, but I don’t feel the need to have it removed today. I don’t know anyone in perfect health, who couldn’t use some sort of medical intervention. But no one gets hassled about it the way fat people get hassled about WLS.
Anyway, so there I am in the room to talk about my hernia surgery. The nurse asks me a bunch of questions about my diet – and when I give her honest answers about being on a strict plan to help lower blood sugar, rebuild myelin, and the like, she writes nothing down. She asks if I have been supplementing with protein shakes. I tell her not only no, but if that’s mentioned I might stab someone, because the last time I was on the protein shake diet I got seriously ill. She definitely doesn’t write that down, either.
I took a picture of her intake notes and this is what it said.
Dr. WLS’s assistant, we’ll call her PA Perky, comes in. She claims to remember me from the last time I was there. Before she even asks about the surgery, she asks if “we can get back on the ball with the weight loss.” I tell her I’m not interested, that I am seeing a trainer/nutritionist who is helping me, and that the protein shake diet made me very ill. She gets very fakey-disappointed. As the appointment progresses, she decides to take out my staples. However, she calls Dr. WLS in to look at my scar, and together they decide that maybe they should only take out every other one, since the scar site is under a lot of stress. I tell Dr. WLS that a lot of my post-surgical pain is because the scar is in a very difficult place on my body – right where my belly ends and my mons pubis begins. He claims it’s in the same site as the old scar. This is not true – it is a good three inches lower. The assistant tries to give me the same song and dance about how my scar could “unzip” and I could have organs falling out. My trainer makes a face - she knows that my organs would have to miraculously make their way through my ab wall and the layer of fat before they’d do that, and that would take something traumatic, not just a little pressure on an external scar. But this is the exact line they used last time to scare me into WLS.
Before you say it, I’ll be clear, here. I am never having surgery with this doctor again. Next time, I *will* go to one of the other hospitals in hopes that they will see how serious I am about not wanting to discuss WLS. I just have to put up with him through the aftercare of this surgery, and then I am never going to see him again. Unfortunately, it’s going to take some time, because my drain is still putting out a fair amount of drainage, which means I will likely have to have it in for a few weeks.
And this time around, Dr. WLS has even more invested; he now sells a line of protein shakes and vitamin supplements in house, where I’m sure he makes a nice percentage. He also has a sleep study doc in house, so maybe this isn’t the first time he’s gone tete-a-tete with my neuro (whom I met when I needed to have a sleep study as part of my pre-WLS examinations). But a friend reminded me of something I’m going to use from here on out when WLS is brought up – since my insurance doesn’t have it as a covered benefit, and we know that for certain now, every time they bring it up I’m going to ask if they’re willing to do it pro-bono. If not, they can stop offering me a procedure that isn’t covered by insurance, please and thank you. (Although I’m almost scared that he’d say yes.)
This is Not The Surgery I Ordered, Sir
I got a gentle nudge that I hadn’t written anything about my surgery in specific, and how the recovery is going. I can’t promise I’ll share all the horrid details, but I hope you’ll feel like you know what’s going on.
So last Thursday I started having lower abdominal cramps around 4pm. (Right after I posted, in fact.) I get these from time to time, and lately I’ve had some serious hurty bouts of them, so I figured it was one of those and slowed down and started watching my Netflix and trying to wait it out.
About two hours later, I started getting seriously nauseous. Also not alarming for Dels, so I took one nausea med, and then the other, stronger one when that didn’t seem to help. The cramps were getting pretty serious, and showed no signs of slowing down.
I really fought the idea of going to the ER, because I’ve been to the ER with ab pain before and one of two things happen – either they find nothing and I go home and eventually feel better, or on rarer occasions, it’s something really serious and I end up going through a medical ordeal. Neither of these appealed to me, and usually if I just wait, they go away.
I tell Ninja that if I”m still in pain at 8:30 I’ll entertain the idea of going. It comes and goes. Maybe the cramps are getting better, or maybe I’m convincing myself of this so I don’t have to go to the ER. 9:30 comes and goes, and it’s getting worse. Finally, at 10 o’clock we decide that at the very least, I might be able to get some heavy duty pain meds if I go, so we find someone to take us (yeah, remember that we both don’t drive? So we were calling friends at 10:30 at night looking for someone to take us!) and go directly to the actual hospital and not the more local ER extension. Although I’ll be seen faster at the extension, if it’s serious there’s only so much they can do before they have to transport me via ambulance to the “real” hospital, so we might as well just go there.
Let’s cut to the chase and say that I was in the ER for 36 hours without sleep or food. They kept moving me around, and once tried to move me to Labor and Delivery. They let me know that I needed surgery by telling me they had called The Weight Loss Surgeon (we’ll call him Dr. WLS) with whom I have some bad history. I wasn’t thrilled, but I knew why they did it – he’s also a general surgeon and because of his experience with bariatric patients, he’s the best surgeon to do abdominal surgery on someone like me. I later learned that I had a ventral hernia – my second – and it needed to be fixed.
This is what a ventral hernia looks like from the inside. Basically, part of your intestine breaks through the abdominal wall and can get trapped. It hurts quite a bit.
Dr. WLS shows up and the first thing he says to me is, “Weren’t you supposed to have weight loss surgery by now?” He and I have a bit of a back and forth, with me telling him that my neuro thinks that the rapid weight loss I experienced while under Dr. WLS care last time caused or exacerbated my neurological condition. Dr. WLS disagrees, telling me I likely have early onset Parkinsons (!!), and he demands to know who my neuro is. I tell him, and later on he actually called the neuro to demand why the neuro told me this when it was impossible. The neuro stuck to his guns, but Dr. WLS just dismisses this.
Anyway, I tell Dr. WLS that I’m not interested in weight loss surgery. He tells me that I have 3 options – I can go home and do nothing, but this is dangerous and can lead to serious complications, I can go to another hospital that “specializes in hernia repair” (he actually listed two other hospitals with bariatric units), or I can listen to his lectures on weight loss surgery and he’ll do the repair that night. He is surprised when I tell him I need time to think it over. I call patient advocacy and they aren’t pleased with these options.
Dr. WLS returns, a little cowed. We agree to disagree, and I make him promise that if he does the surgery, that he won’t bring up weight loss at all, or weight loss surgery in specific, until I’m seeing him in his office for surgery follow up. He agrees.
I am brought directly from the ER to pre-op, and I don’t know if I have a room to go to when they’re finished. They actually warn me that I may need to go back to the ER if they don’t have a room. This makes pre-op so much more fun. [insert Mike the Surgical Nurse story here]
The surgery goes well. I am wheeled into post op and I hurt all over. Not only from the surgery, but also from being in one position for so long, and also because I’ve had all kinds of tubes in me, some of which were still in (a nasal trumpet, which sounds more whimsical than it is, and a foley catheter). After a few hours, I’m taken up to a real room.
I was given an epidural to help with the surgical pain. It does okay – I still felt some discomfort when I moved, and I was hitting the dose button often – but I end up going into opiate withdrawal because they deny me my maintenance pain meds for over 48 hours and the epidural isn’t enough to ward that off. The hospitalist decided I am on too much OxyContin and cuts my (prescribed by my pain doc) dose in half. Somewhere along the way, they also tell me that my A1C is three points higher than it was six months ago, and now I need mealtime insulin. I’m baffled by this but do not argue.
Unfortunately, it wasn't tequila. Might have worked better.
Fast forward through some bad nurses. It gets to be time to remove the epidural. Dr. WLS tells me that they’re going to walk me from the epidural to IV pain meds to oral pain meds. This is not what happens. They take the epidural away and I am given less pain medication than I take on a day-to-day basis to cope with the surgical pain. Obviously, this fails to quell the pain I’m experiencing. I stop eating food, and when doctors/nurses try to encourage me to eat, I tell them that I want to, and I will when my pain is below an 8. It takes almost 12 hours before finally I’m given a bolus of IV dilaudid, and am given the option of IV push pain meds to supplement the orals.
However, I’m totally guilted by everyone – the hospitalist, Dr. WLS, and even the nurses – every time I ask for IV meds. I can’t go home until my pain is controlled by orals, they say. I tell them that it’s insane to think that my day to day maintenance drugs are going to be enough to cope with not one, but three incisions in my abdomen, one of which is on a part of my body that experiences a lot of pressure when I sit up or walk. Even the night before I was discharged, I got a dose of IV meds. But they’re so keen to send me home, and at this point I’ve had less than six hours sleep in six days, I just nod my head and agree to whatever they say.
I get home and call my pain management doc just to inform them that I was in the hospital, and that I was given a med to deal with pain but that it was cleared by the hospital with them. They tell me that no one ever told them about the med, and if I have already filled it I am in breach of my contract. Thank the Gods I hadn’t. I get their okay to fill the med, but only if I stop taking my other breakthrough med. This sucks because the hospital’s plan was to augment my regular drugs with the new drug, not replace one of them. So needless to say I’ve been in some pretty bad pain since I’ve been home. But I have slept like I invented sleep, and that’s been good.
Just keep going until you feel less sugary, I guess.
If that weren’t enough, I was sent home with insulin, but with no instructions on how much to administer. I had to call the hospital’s diabetes educator, who was deeply embarrassed and shocked when I told her that no one told me how much to give myself. What’s funny, is that since being home, I rarely test high enough to warrant insulin, and when I do, it’s just over the limit for the lowest dose. I am having my A1C retested at my primary care doc’s next week; I think something hinky is going on.
Tomorrow I see the pain doc, and I’m praying together we can find a way to get my pain under better control. As of now, I can basically lay down (on one side, because I have a drain in the other), sit up for short periods of time, and waddle to the bathroom. Anything more than that is too taxing, pain wise.
The other surgeries, the D&C and the ablation, are on hold for now. I’m hoping to be well enough by mid-May to get them then.
And I’m bringing my nutritionist/trainer to the follow-up appointment with Dr. WLS, so she can tear him a new one if he tried to put me on protein shakes or threatens surgery. I like having attack jaguars.
So that’s where things are. I hate that this happened, I hate the timing of it, I am very serious about wanting to address why I keep having hernias (I have a weak ab wall; my trainer is all over working on that once I am healed from surgery), but for now all I want to do is sleep a lot.
Mike the Surgical Nurse
I was admitted to the hospital on Thursday evening and had an emergency ventral hernia repair on Friday night. A lot happened throughout my six day experience, most of it pretty bad. I promise to give a more detailed account soon. But I had this singular experience on Friday night that I wanted to share all by itself, so that’s what I’m addressing in this post. More information to come.
As a member of the human race, the idea of a group of strangers standing around my unconscious naked body while it is being cut open and organs lay bare, makes me a fair amount of nervous. Even when I know it’s the best option to heal and feel better, once I have signed the necessary consent forms in pre-op I am now given a gentle sedative just so I can remain functional enough to follow instructions and pay attention to what I’m being told. And as this surgery was completely not on my radar when I went into the ER the night before, and there had been some crazy drama in the hours leading up the surgery, I was pretty emotionally wrung out and keyed up at the same time, which is difficult on a body.
I don’t remember from my previous surgeries if pre-op always seemed so rushed, or if it was this experience on its own, but there were two nurses and two doctors asking me questions and examining me all at the same time, while also instructing Ninja as to what he should be doing as well. I was really losing grip on any sense of stability, and that’s even after I started employing meditative techniques that I practice specifically for situations like these. I was also in a great deal of pain, which didn’t make things easier.
The sedative starts to slow down my heart rate and my breathing, and I see the socks. At first, I wonder if maybe the Versed is affecting me in a whole new way and I’m seeing things now. I take a quick assessment of the space around me, to see if anything else seems odd or unusual. Nope, the only unexpected thing in my line of sight is that this person has the bottom of their scrubs tucked into a pair of pink and green argyle knee socks.
Not actually Mike. I chose this photo because these are, colorwise, the right pinks and greens. Also, I'm pretty sure Mike is the hairy-leg kind of guy.
I unfocus my attention from all the bustle and questions and fear and take a moment to look at this argyled person. He was about six foot three or four inches tall, with a state-school-football-player’s build. He had rusty red hair tucked into the surgical hair net, and a short, just slightly wild looking red Van Dyke. The last two thoughts I remember in this slow-motion Matrix moment was that a) boy, it’s been a long time since I found a tradtionally-masculine-looking, cisgender man attractive, and b) boy, I find this traditionally-masculine looking cisgender man attractive. (I admit, I had no way of knowing if Mike was cisgender. I was more musing on the fact that he ‘read’ that way to me and it wasn’t a deterrent.)
“Nice socks.” I break out of the reverie and find myself feeling the Versed more, as usually complimenting someone I find attractive pretty damn nervewracking.
He starts talking to me, and all of a sudden I’ve completely forgotten that in just a few moments, someone is going to be slicing my belly open and unkinking my intenstines. He gets me into the stretcher to wheel me into the OR (which he calls “his”, even though he’s not the surgeon) and usually at this point, Versed or no, I’m beyond comprehensible thought. Instead, I’m able to help transfer me to the operating table while discussing our tattoos and how he flies home to Mississippi to get his done because that’s where the artist he’s been going to since he turned 18 is.
I have to get an epidural to help with post-operative pain, and because of my body shape I have to hold this kinda uncomfortable position while the anesthesiologist does whatever he needs to. Mike helps hold me in position, and we talk about my experience of getting songs trapped in my head when I go under general, and how he wishes they could allow patients to request what music they listen to before they go under. I don’t remember what was playing, but I remember we both liked it.
Should have known this was an odd looking "oxygen" mask
I laid back down on the table and went through some last minute positioning things. Mike rubs my arm as my eyes begin to tear up a little, because I realize that I’m going to be in the same position for an unknown amount of time and oh yeah, that’s because they’re going to cut me open and blah blah Del is made of meat and people die on the table and blah. He tells me I’m going to do fine, and the anesthesiologist puts a mask over my face and tells me to breathe the “oxygen”.
(That’s the one part of my actual surgical experience that pissed me off. Normally, they do the whole, “This is the general. Take deep breaths and count backwards from 100.” It’s purposeful, I know what’s happening, it’s all above board. This time, it was a little underhanded. I mean, I totally think they did it that way because I was having such a hard time emotionally they didn’t want me to have an anxiety attack when he said, “Okay, we’re about to begin.”)
The next thing I am aware of is being wheeled into post-op. I desperately try to figure out if Mike is there, but I’m too out of it and can barely keep my eyes open. I never see him again.
The PS to this story is that at another point later in my stay, I am seen by some surgical assistants. Either Ninja or I mentions Mike, and all of them go on about what a great guy he is and how they like working with him. Ninja then mentions that it would mean a lot to me if he would come by for a visit. I must have turned six shades of red.
He never came. But meeting Mike, and the emotional support he gave me through the scariest part of the whole experience, is something I not only won’t forget, but will strive to give to others. Ordeal workers need Mike the Surgical Nurse too.
"It's going to be okay in the end. If it's not okay, it's not the end."
A Patient Patient
I am in the hospital, updating from my phone. I went to the ER Thursday night with cramping gut pain; it turned out to be my third hernia and I had surgery Friday night to fix it. I am doing all right, but have some incision pain and I don’t walk so well. I should be home in a day or two; I will write a better update the
