Anorexia or Gastroparesis? Part I The Lesson of Depakote
I hallucinated a great demon, with horns, a mouth that sought to devour. I think I must have called out, because my friend held me on a roof top in Chicago while I tried to fend the beast off. I can feel the wind in my mind, still, if I close my eyes. If I focus, I can bring the demon here, though now, years later the beast is without solid form. More like a hologram, less terrifying, but a reminder of what the wrong medication can do.
Later, I scrawled in large unsteady letters across a page in my notebook I do not want to take this Depakote.
I stopped taking it soon after. It would be years before I was able to get medication for seizures again, but the image haunted me.
The idea that the mind is that fragile, and we can bring it to a disinterested neurologist who will not see the beast and not feel its breath. They will say to give it another month. Let the body adjust.
There is no adjusting to hallucinations. They are real, and they are not. They panic in insidious ways, in dark corners of the mind. They force you to ask yourself… Am I mad? And they cause others to say… You are mad. And the sad thing is, when that pronouncement comes, they leave. They don’t wait for that month to see if stability comes. They leave.
That was the lesson of Depakote.
My mind, I’m not sure where it was that year. There were weeks I seemed to have seizures several times a day. I lost my speech. I tried to talk and my words were somewhere I could not access. The only place I could find me was the piano. I could play the piano, as well as I ever could at any rate, and I could sing. But I could not speak.
I didn’t have health insurance back then, so I didn’t see a lot of doctors. I would go once in awhile when something big happened, and be told I had anxiety or I had epilepsy or a seizure disorder or anxiety again… And I lost the relationships I had, to people who were well. To people who never felt the breath of a demon by way of Depakote. There was nothing I could say, because I had lost my voice.
After that, it isn’t too hard a push when the people you care about say you are crazy. Maybe? You think. Maybe.
That is a subjective state. It is whatever is misunderstood said by unqualified people to dismiss you.
I am unsure if it matters, now, as all those people are no longer in my life. All that is left is me, and my eyes which I close to recall the demon.
I moved across the country. I still didn’t have health insurance, so I suffered with allergies until I could no longer cope with it. The doctor was an older man. He accused me of being anorexic, that is the word, accused, with a firm tone. I denied being anorexic, and asked for allergy medication. He repeated that I was anorexic, and then he told me he refused to give me allergy medication unless I agreed to go to therapy for anorexia.
I was using up all my money seeing him! I didn’t have money to go to therapy! I didn’t believe I was anorexic. I was underweight, but plenty of my family is small and underweight. I told him that fact. He stood firm, and I left his office with nothing but a bill and frustration. Oh, and my allergies of course, those too.
I think of this doctor sometimes. I wish I could have a cup of tea with him because I do feel he was trying to help me, but that was the worst way he could have gone about it. That encounter happened when I was about twenty two years old, I’m guessing. For him, sending me to therapy for anorexia was obvious, maybe even life saving. For me, it was cost prohibitive and he was not addressing the main complaint I was going to him with. I think most people assume everyone has a support network they can extract resources out of, but some people, like me, do not.
For a do- over, I would like to offer him honey for his tea, and then tell him of course give the poor girl allergy medication. Then, instead of ultimatums, and rushes to diagnosis, suggest testing. I couldn’t afford the testing back then, either, but at least it is more practical then a rushed psychiatric diagnosis.
The bark dust blowing onto my apartment lawn caused my eyes to swell and I cursed that doctor, and I poked at my ribs. Again, that burning question. Am I mad? He’d set it to me again, and it churned in me for another few years before I’d go to another doctor who would affirm that yes, yes. I am.
I pleaded with her. I tried to explain myself, my low weight. It was a no go. She was convinced I was anorexic, and I was lying to myself. Was I lying to myself?
I try to be honest with myself, to the point of pain. Beyond pain, I chase consciousness down, I want to know why, and how, and who, and beyond the who because I remember what it is to be beyond, pushed down. In the ether. Where the shadowed hallucinations lurk, and the you is a suggestion. Saying that to the wrong person is dangerous, but I’m known to play with fire.
I get burnt a lot. I’m stubborn, I learn through scarification, I suppose. I tried to explain sensations running along my brain, in a migraine, the colour of aura. I’m not sure why it was important, but the doctor said my migraine was stress induced, or from PTSD.
I sat with that, in my darkened apartment. Where was the stress coming from? I argued with myself. Was it PTSD? I read books on migraines, on neurology, case studies. I read books on psychology. I finally braced myself, and read books on anorexia.
They didn’t fit right into my puzzle. The doctor kept mashing the piece in, but besides the obvious skeletal frame the rest just seemed off.
I wish I was a perfectionist. I am haphazard, wild haired, a deep into the night reader with dark circles carved beneath my eyes. I have stacks of notebooks and empty Lego cups filled with pens, unfortunate piles of hoodies on a chair so I can easily don or shed them… I am a reflection of my internal noise. Tornado like, I revise myself in a windstorm of energy and then the calm of the storm.
While, like most anyone you could ask, I would like to be more attractive, I don’t fixate overmuch. I don’t fuss in the mirror for hours over a flaw. I’m aware of what they are, but whatever.
I spend more time thinking about other faults, really. Like, how dare I not be better at understanding some arcane scientific thing or why the hell am I not Lindsey Buckingham? I watch him play the guitar, and I weep for his musicianship.
I don’t look at the beautiful women and think seriously that I could starve myself into being beautiful like them.
They won the genetic lottery of beauty. I knew early on I had lost that battle, so I turned my attention to being interesting. That was what I could be, and if I fail at that… well. That is truly a shame.
None of these points mattered, and I found myself in an eating disorder treatment program. The doctor had convinced me that I was on the verge of death if I did not go. I was too underweight, too sick, I didn’t see it because I was mentally ill.
I talked to my assigned therapist, tried to explain myself. I combed through my history for why I would possibly be anorexic. I came up with a theory involving the prophet of the religion I’d been raised in and how they’d had specific rules for how and what to eat. I realized I never ate pepper because the prophet had said it was forbidden, even though I’d left the church as a teenager. Diligently, purposefully, I poured pepper on my food in the hospital to prove to myself I would not be held hostage by old beliefs. There had been rules about heavy creams and sauces, basically any extra item you put on food to enhance pleasure. I added extra pats of butter to my pancakes, pats of butter in addition to the ones I was required to eat by the program.
As I ate, I noticed a strange thing happening. My thoughts increased. It was as if a fine web was growing and stretching, connecting.
The emotional stuff I loathed. Loathed. I hated the parts where we were supposed to discuss our feelings, one by one. I didn’t feel anything much, at least not anything much I wanted to share with a group of strangers. If Depakote taught me anything, it was that sharing is not safe with friends and so it is definitely not safe with strangers no matter how many times I’m assured in soft tones that it is a safe safe. Bullshit. No space is safe unless you are the lord of it. And that is bullshit too. Because you aren’t in control of you. At any time, your vision can just go, your body can just go into a seizure, your voice can not come out, your consciousness, your you… you can just not be you at all. No space is safe.
So I punted. I said the minimum I had to say. I listened to others who got a lot out of therapy, and that’s great, but therapy for me…
It’s a nonstarter. I think the closest I’ve gotten to therapy that has felt real has been with Dr. Tom when I asked him what I should do if I want to kill myself because I’m in too much pain, because I’ve read studies of others in my condition killing themselves, and he said to me, “Just don’t do it!”
And we laughed.
Because no space is safe, and no space is sacred, so we may as well laugh at it.
My stomach hurt so badly as I gained weight. I’d throw up, and then have to make up for it with extra Ensure. It was torture.
I decided I didn’t want to die, which is why I was drinking the Ensure, because I wanted to see what happened next. You can’t see what happens next if you’re dead.
I gained more thoughts with the weight, but I lost the ethereal pure feeling I had with being so underweight. It is a fair trade, now that time has separated us, but it feels almost spiritual to be that underweight, because the mind is tamped down and your hands are tingling with lack of oxygen, and you feel- light? Made of lightness.
It is intoxicating and hard to give up that feeling. Like a drugged space.
So that is where I am unsure where the madness and the physical meet.
I think they are linked, but perhaps anorexia ought to be expanded in definition outside of the stereotypical image. It made me harder to treat because I did not respond to any of the stuff besides the cold clinical facts- I wanted to turn my brain on. I didn’t know it was dialed down. That was wild information to me. I didn’t care about anything else, the colouring pages, the circle of feelings, the endless asking for my emotional outpouring. I’m just not built that way.
Tell me what is better than my current state, and now we’re talking.
After I gained the weight, I stopped reporting symptoms to my doctor because I did not want to go back to therapy. I still threw up. It wasn’t on purpose. I dug through my mind. It definitely was not on purpose. But no one believed me. My stomach swelled after I ate. I remembered why I stopped eating so much to begin with.
Pain, nausea, GI bleeding. I’d feel full after eating the smallest meal.
I wondered if it was all in my head, because that is what I’d been told over and over and over. I was mentally ill. This was stress. I ate gelato almost every day to keep my weight up to avoid having to go back into the eating disorder treatment program.
Welcome to recovery.