Creeping Back From the Abyss

June 14, 2013 at 10:05 pm (Uncategorized)

I haven’t been able to write for the past few weeks—or do much of anything really. I landed in the hospital for 12 long days last month, and I’ve been slowly picking my way back to something resembling a normal life.

I’m still not sure exactly what happened. Like so many times in the past nine years in Chronic Town, the ground beneath me seemed to vanish, and I plummeted into a realm of terrible pain and sickness. On a sunny Thursday in May, I got my first infusion of a promising new treatment called intravenous immunoglobulin (IVIG). My doctors had discovered that my immunoglobulin levels are dangerously low. Immunoglobulins are antibodies that play an important part in your body’s ability to repel bacteria. Being so short of them helps explains why I had four months of nearly constant sickness. I was excited to start IVIG. Not only should it bolster my body’s defenses, but there’s some evidence that IVIG can help tamp down chronic auto-immune diseases. It’a not FDA-approved for sarcoidosis yet, but my doctor had some hope that it might help.

I remember getting the IVIG infusion. I remember two of Andrew’s buddies arriving on Friday for a sleep-over. I remember hearing the rhythmic grinding of the ice cream maker, and the giggles of nine-year olds not wanting to go to sleep. And then, I remember nothing but pain—and vomiting from the pain.

One of the ongoing problems I’ve had to deal with since sarcoidosis moved aggressively into my brain and nervous system in 2007 is pain. God-awful pain in my head. I am loath to call it a headache because that minimizes what I feel. I’ve had my fair share of migraines and other headaches, but the fury the disease unleashes in my head is like nothing I’ve ever experienced. This pain takes my thoughts, takes my words. I stop existing when the pain uncurls itself from the deep crevice in my skull where it’s been lurking and biding its time since its last appearance. There is not room enough in one head for my identity and this pain.

When the pain stretched out its scaly claws on that Friday after my first IVIG treatment, I thought it was another flare-up of the neurosarcoidosis. It would suck, but I could manage it with pain medication and however much time I needed to stay horizontal. The vertigo and regular blind spells that also accompany my sarcoidosis flare-ups began to escalate, but still, I thought I was on familiar ground.

Then the pain showed its full power. I thought the bones in my head would explode. When I wasn’t vomiting or dry-heaving, I curled as far under my pillow as I could, keeping fingers pressed to the sides of my skull, thinking I could somehow keep the architecture of my bones and brain in place. I lost my place in space and time. I was in pain. I was the pain. But the pain was not mine to control.

I learned many days later that I asked Jay to take me to the hospital. My doctor could not alleviate my pain with a morphine pump, so he tried simply knocking me out with a massive dose of Phenobarbital. I do not remember the pain releasing me to sleep, but it must have. My parents rushed to help with Andrew. I surfaced from my fugue state of pain and sedation to Jay holding my hand, and again to my father sitting next to me quietly, and again to my mother smoothing my hair, and again to my good friend Jan sitting quietly across the room, and again to my dear friends Martha and Molly. And after each breath of the world beyond the horror in my head, the pain rose up and swallowed me again. I could not bear light. I could not bear people talking to me. It wasn’t just that the sound aggravated the pain. But more that the pain was a jealous mistress and would not let my brain interpret the sounds into language. My mouth tasted of bile and metal. My vision, when it stopped swirling long enough for me to notice, was bleached like over-exposed film, with a flickering corona on its edges.

The last time I felt anything this terrible for so terribly long was when I had aseptic meningitis—back in 2007 when the sarcoidosis announced its presence in my nervous system. I wonder if I had the same thing again this time. I learned after I was home that aseptic meningitis can be one of the rare side effects of IVIG. I am suspicious of the drug’s role in whatever happened, particularly after my second infusion of it two weeks ago left me with a week-long headache. (I was able to manage that one at home at least.)

Anyway, determining the cause doesn’t help much in the rebuilding I now have to do. It is frightening to lose yourself so thoroughly. I feel shaky. I am getting back my stamina for daily life, though it’s incredible (and depressing) how much muscle and strength you lose after being flat on your back for 12 days. But what’s not coming back as quickly is faith that the pain won’t return again and seemingly without reason. Even though I don’t hurt the same, I sense it out there, growling, teeth bared, and it scares me. Taking things day at a time is too ambitious for me. Returning from the abyss is a prospect best navigated minute by minute.

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