I Want It As Much As You Do

January 18, 2013 at 12:15 am (Death and Dying, Living, The Panniculectomy) (, , , , , , , , , , , , )

I get the gentle reminders, the emails, the comments in conversation. I hear them and I feel kinda guilty. I sit in front of my keyboard, the ragged notes hastily jotted down in the ICU by my side, and I try to describe the experience I had in the Underworld on December 28th.

Part of the problem is that I’m still remembering, bits and pieces hit me at the oddest times. I’ll be drifting off in thought and then another memory, in full technicolor, will hit me, one that I haven’t had before. I try to write it all down, try to make it fit into clunky, odd looking words, for myself if for nothing else.

The first challenge, I recently figured out with help from my friend Hugh (a wonderful writer and poet in his own right) is that there is no narrative to my experience. I cannot draw a timeline in which things happened in a precise order. I can try to force the images, the blocks, the pieces of patchwork into some sort of made up fictional narrative, but it doesn’t seem to want to be locked down like that. How does one tell a story without the sense of linear time?

Secondly, as I’ve said before, parts of it are deeply personal. It would take me more paragraphs to explain some of the symbols and images I saw, because you don’t live in my head, know my entire life story, or have the same reaction to certain archetypes/images/thoughts/feelings as I. It don’t know if the story wants to be weighed down in lots of explanations and footnotes, because it loses something in the process.

I don’t feel ready. One of the bigger messages I got is that this is a year of contemplation, and it may be that I’m supposed to go over these notes, try to recreate all the little scenes and memories over a much longer period of time. I am pretty certain some things that I remember will only make sense once I’ve had a chance to go a little further in this journey, like when an author drops a seemingly random piece of information about a character in chapter 2, never mentions it again, and yet it’s that tiny little factoid that solves the whole plot. In some ways, part of me is still down there, sitting on a rock having a big think, hoping that if I give it more time to marinate, it will make better sense to me.

I feel like I owe you a story, something, some piece of wisdom that came from my experience. So here’s something I feel like I can talk about, but ask me any questions and I’m likely to crumble.

Everything is a choice, she whispers. So many people, especially those ‘spirit worker’ friends of yours, makes everything in their life out to be an absolute, it must be this way, the Gods told me so. They speak of it as though this life was thrust upon them and now they’re just following orders. You can always say no. You can always walk away. At any point in time, if you are doing something, anything, and someone asks you why you are doing it, you should be able to tell them about your choice. Not all choices are fabulous and wonderful; sometimes the right or best choice is the drudgery and the discomfort. But it’s still a choice, still something that you made a conscious decision to do. Every single day, you choose to go to work, because you think if you don’t you’ll lose your job and go broke and be homeless and eventually die of starvation. You create this future in your head where the only right answer is the one you’ve chosen, and every other option ends in ruin. But how do you know that if you take today off, you might just run into someone at the Starbucks who’s looking for a new such-and-so, making twice as much money as you’re making now, in a part of the country you’ve always dreamed of living in?

Don’t get me wrong; there are wrong choices. Or at least, choices that have outcomes that are uncomfortable, and steer you away from your Purpose. But even if you’re going to make a wrong choice, you need to do it with an open heart, knowing that part of being alive is that you have complete autonomy over what your body does and does not do. You might have to make accommodations for things like disability and disease, but if you want to sleep 18 hours a day, you can make that choice. If you never want to see the sun again, you can get a graveyard shift job and only shop at 24 hour grocery stores at 4am. Nothing about your life is written in stone – not even what the Gods want you to do. We understand that you always have the right to say no, to choose something else, and then it’s our job to meddle and push and try to convince you to make a different choice, but there are plenty of people we approach for one reason or another who just ignore us, convince themselves we’re just a manifestation of mental illness, or purposefully choose to do something else because who wants to be in truck with an Invisible thing that might tell you what to eat, what to wear, what job to take…it feels like you’re surrendering that choice when you take on the yoke of working for us, but even in that we know, and honor, and are appreciative of, the choices you make that benefit us.

People say they can’t meditate, and you know the truth – it’s more that they cannot find a way to choose to meditate. It’s not like it’s a terribly difficult skill, and it’s easy to get better over time, but it means making that choice, every day, to set aside time to do it. People do this about prayer, about going to rituals, about celebrating their faith – they think that spirituality is a frivolous task, only to be undertaken by force, habit, or boredom. The reason we keep reaching out to people like you, Del, is because you can be living proof that choosing a life that puts spirituality at the top of the priority chain can still be a full and enjoyable life. So when you get together with your friends and gripe about what the Gods ask you to do, you’re working against this very simple Purpose.

This transitioned into talk about my friend Jon, who factored heavily into my experience with Hel, and I’m not ready to talk about that yet.

I want to share it with you. And I will. Over time. In pieces. As I get to better understand them, and glean what needs to be shared from what should remain personal. I am honored that you’re interested in what happened, that you don’t just dismiss the idea that something significant happened to me that day, but I need more time to write it out.

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A “Good” Test Result

July 26, 2012 at 10:11 pm (Chronic Pain, Living, Medical, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , )

Today I finally got one of the tests that Neurologist number 5 prescribed back in November. (Things have been kinda hectic, medically, since then, so I put them on the back burner.) It was a EMG, specifically a surface EMG. This means they put conductors on my skin and ran increasingly strong shocks through my nerves to see how they reacted.

The test was quite painful. At the higher levels, it actually felt like my tics do, and some of the shocks caused noticeable tics for a few minutes afterward. This is a good thing, as I rarely seem to tic in front of a doctor during a visit, so at least a medical professional has now borne witness to the phenomenon. It may also end up helping me better explain what I mean by “tic” to doctors, too. But let me tell you, it hurt. I cried, and I’m no pain wuss. In fact, for several hours afterward I felt sore and my nerves were over-active.

Because this office is awesome, after the test was over the doctor came in and told me the results. (Usually, when you get a medical test, the tech can’t tell you anything about what’s happening or what they see, so you end up having to wait until your next appointment to find out what it all meant.) He was very concerned – I’m not entirely sure what it means, but he repeated that I had “low amplitude” several times. He first posited that this might be because I am obese, but I pointed out that my limbs are fairly slender and I carry most of my fat in my torso. He agreed with me, and became more concerned. He decided that since the results were markedly “low”, that there could be some “artifacting”, which I assume means that there was something wrong with the test or how it was administered.

To my dismay, his recommendation was to repeat the test at one of the Big Hospitals in our area. I’m starting to think that living in an area where I have access to two major cities, and thus their world-renown hospitals, may be a double-edged sword. I used to think it was a good thing, but with all the crap I’ve had to put up with from Johns Hopkins (including sending letters in the mail asking for an appointment and them going unanswered – after several attempts via phone and email), I am starting to dread the Big Hospital referral. The neurologist suggested other Big Hospitals (George Washington being the one I’m going with). I’m also unthrilled, obviously, that I have to undergo a pretty unpleasant test yet again; especially now that I know how bad it is.

There’s a second kind of EMG, where they test the nerves inside your muscles. This requires a needle-like probe; I’m not afraid of needles at all, but I had another neuro try this test with me and it was so painful I had them stop the test. This neurologist wanted to try that test, but seeing what shape I was in after the surface EMG, he decided I’d had enough “torture” for one day.

Part of me is kinda elated; finally, a test that proves that there is something neurologically wrong with me! After all the hoopla of getting various MRIs, and having to find stronger machines that can accommodate fatties like me, only to have doctors dismiss me because I couldn’t find an appropriate machine; this is actually progress. But part of me is scared: that list of disorders that abnormal EMGs can mean is pretty daunting. I did notice that Polymyositis was on the list, and that’s a diagnosis I’ve heard before from my pain management doctor. (It’s one of the ones that qualified me for the wheelchair.) It basically means “inflammation of the muscles”, which doesn’t explain half my symptoms, but it’s a word. And words are powerful.

Of course, since my neurologist is also a sleep specialist, he noticed I had not yet had my CPAP titration, and he is concerned that my apnea may not only be playing into some of my symptoms, but as he put it, “Neuropathy won’t kill you, but apnea will.” So he wouldn’t let me leave the office until I scheduled that. He did do me a solid – he wrote on all the paperwork “Patient may sleep on their side” – most sleep studies force you to lay on your back, but a) I don’t sleep on my back, ever, so it doesn’t accurately represent how I sleep at home, and b) sleeping on my back is uncomfortable and even painful from time to time. So I’m doing that next week.

A little news on another medical front: it turns out that even though I have most of August free, the OBGYN isn’t available for the D&C/ablation until September. In better news, however, he has decided that I can have both procedures at the same time, instead of two weeks apart. Scheduling-wise, this is a good thing, but I’m a little concerned that my manly-parts will need extra time to heal after such ‘abuse’. Right now, it’s scheduled for a week before a camping-in-cabins event where I have to be fairly active; we are actively trying to reschedule it for later, but my schedule really doesn’t have another big hole for recouperation until December. I have to decide if it’s more important to get it done sooner rather than later, or wait until I have copious enough time to heal at home. Like most things in my life, it will likely end up a compromise.

I’ve been having a fairly bad pain flare since I got home from Camp Out. For the first few days I was basically bed ridden and able to do little more than watch tv. My boyfriend came to visit and I was active while he was here (stop your dirty thinking…), and I also didn’t get the kind of sleep I’m used to (hey now…). I will tell you a secret: while he was here, I was smiling through a lot of pain. My desire to ‘live life’ was higher than my pain, so I tried as hard as I could to keep up.

I even went through with the plans to get a new tattoo – the funny part being that the pain in my legs hurt much worse that the ink – but I think I’m starting to pay for all my fakery. I feel like I might be coming down with a cold or the flu or something like that – a little sore throat, a little flu-like achyness (which doesn’t feel like my regular pain), my ear acting up – which is a typical Del-body response to pushing too hard. It probably didn’t help that I did a fair amount of spirit-work type stuff (channeling, etc) while he was here, and that always throws my body for a loop. I need to find a way to draw a boundary around how much of that happens while we’re together – he kinda relies on me for messages from his God, since his “god radio” is fuzzy at best, but at the same time I don’t want our relationship to become rooted in me doing spirit-work for him. There’s a post for SGRS coming up on this part of our relationship, mostly because I feel there’s a dirth of writing about being the partner of someone with a God-relationship.

I’m going to go into spoon-recovery mode for a few days, so if I’m not super responsive to email/FB/etc, you know why.

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Two Roads

January 26, 2012 at 2:41 pm (Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , )

When I saw this image on Facebook, it neatly summed up a question that a friend posed to me some time ago that I’ve been doing a lot of thinking on.

It’s an honest question, one that makes a lot of sense to me, but at the same time, seemed like such an odd thing to ask.

“So if you gave up all your woo stuff, does that mean you’d get better?”

I thought about approaching the answer from a series of directions. I asked spirit worker friends of mine to write little vingnettes about how sometimes our work is non-consensual. Fala posted a great answer to my question in her essay “You Can’t Go Home Again“.

But I have absolutely no real idea if this is actually a non-consensual part of my spirit path. It never occurred to me to say No. Now, that could be conditioning from years of working with Deities – that although sometimes No is the right answer, sometimes not questioning what you’re told is also the right answer.

And then stuff happened in my life. My spouse had two tonic-clonic seizures within a week of each other, which has never happened before for him. (He has epilepsy, but usually we see a seizure once every other year.) I had a falling out with dear friends that I had no idea how to fix. I got some spirit work that needed my immediate attention. I had a lot of teaching-kink work that needed a lot of administration (my least favorite part of the gig). I had some clients who needed my attention. You know, life and things.

So I made the conscious decision to put my health stuff on the back burner. Yes, I need to schedule an EMG and have some blood work done; I need to chase down an ID doc at Johns Hopkins; I need to start researching a new GP; I need to contact a few people for health-related stuff. But I just said “Fuck it. I’m dealing with the rest of my life instead.”

Now, this treads a dangerous line for me. I was Told, under no uncertain terms, that I couldn’t just ignore this stuff. I know I have a strong desire in me to just give it up, to stop seeing doctors and digging for TEH ANSWER OF IT ALL, and just stay home and let whatever is going to happen, happen. But I was successful in putting it off for a few weeks, and it’s only been the last few days when I’ve been feeling Tapped On The Shoulder about dormant medical stuff. Not a strong Do It Now, just a gentle, “hey, there’s also this stuff.”

And throughout it all, I’ve been deeply pondering the whole “What if I told Baphy to fuck off? That I didn’t want to die in some spectacular public fashion, that I want to just hole up and live the rest of my life in peace? Would I die faster, slower, or not at all?”

That’s not even the question I was asked. But it’s the closest I can come to wrap my brain around. Because the way my mind works, I believe all this spiritual woo-woo shit is 50% psychological, 50% metaphysical. And in the case of my illness, I’d substitute “psychological” for “physical”, or at least maybe 25% of each. I believe that I have a chronic illness because it runs in my family, because I have shitty genes, because I haven’t taken the best care of myself, because sometimes shitty things happen to people, as much as I believe that I have a chronic illness because my Imaginary Friend made me this way so I could pontificate on the spirituality of suffering, disability, illness, and death from a first hand perspective. Both are equally true.

When I seek it out internally, though, there is only one road. Maybe it’s crazy, maybe it’s true, maybe it’s both; but I choose to believe that all of this has some greater meaning; that my suffering should not be in vain. If I can help one person by reading what I write and knowing that the Gods care about their suffering, too; that in those moments where we are necessarily alone (like in an MRI tube, or late at night when we’re awake because we hurt and everyone else we know is asleep), there are Imaginary Friends who are actively interested in our existence; We Are Not Forgotten.

Being disabled can make you feel invisible. Being in a wheelchair makes you feel like the world is made of butts, and that’s not a very pleasant world to inhabit. Being sick when your friends want you to come over and hang out all the time makes you feel like a lesser member of society. If putting my faith in the idea that This Has Purpose gets me through the dark times, then I’m glad I only see one road. That I choose to believe that this is not something I can walk away from, as much because of my Invisible Friends as for the others I give voice to. Otherwise, my life is watching Netflix videos and reading ebooks and hating being alive.

I like the road I’ve chosen.

I hope this answers your question, Friend-I-Have-Not-Identified.

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