Rubber Bands

October 3, 2015 at 5:10 pm (Uncategorized) (, , , , )

I am finally coming back to life. It’s been not quite six weeks since my 33-day stint in the hospital, but it’s really only in the last few days that I feel myself picking up the fight again—the fight against the disease determining who I am, the fight against the god-awful tiredness and pain I feel every day, the fight against the part of myself that just wants to crawl into bed and never get up.

I used to bounce back more quickly after heath catastrophes. Or, at least it feels that way. Back in 2013 I was in the hospital for a grand total of 40 something days. They were 40 something terrible days of pain, vertigo, periods of blindness, and fear. But I picked myself up and shook the dirt off within a few days of getting home.

This last hospitalization was different. It’s not that I felt more pain or worse symptoms. But by the end I felt totally broken down. I could not stop crying when I got home. I cried if someone said something nice to me. I cried when my pain escalated. I cried when I thought of how much hurt my hospitalization had caused Andrew. I cried when I saw how exhausted Jay looked. Typically I’m not a weeper. But night after night I curled up on Jay and bawled my eyes out until his chest was sodden and I could not get enough air between my sobs.

It wasn’t just the crying that concerned me. After being flat on my back for 33 days, I lost a lot of physical strength and resiliency. I needed to sleep for 16, 17, or 18 hours a day. I woke to shuffle around the house a little, and then fell back into dreamless sleep that did not sate my fatigue. I’m ashamed to admit that I liked being in bed. I really didn’t want to get up. I was so out of shape that doing a simple task around the house like unloading the dishwasher wore me out. Plus getting out of bed and trying to do fold a load of laundry caused the pain in my head to escalate. It felt better and safer to curl up in bed listening to Scandinavian mysteries on my ipod.

The hardest part of getting up was running into Jay and Andrew and feeling horribly guilty at the impact my hospitalization had on them. Intellectually I knew that it wasn’t my fault any of this had happened. But emotionally I was raw with guilt. After absenting oneself from a family for a month, it takes patience and effort to muscle your way back into place. It took a few days after my return for Andrew to make eye contact with me. And Jay had to stay in constant motion to do everything around the house after working a full day. He looked brutalized by exhaustion. It was easier some days just to stay in bed instead of facing the damage I had caused.

What I’m describing is emotional and physical brittleness. It’s an aspect of chronic illness that’s hard for “outsiders”—all you healthy folks— to understand. I am fundamentally a different person than I was before I was diagnosed with sarcoidosis nearly 12 years ago. Each year of health crises, medical procedures, news of the disease traveling to a new organ, threats that I might die, rounds of chemotherapy, all wear me down a little more. Picture a new rubber band. Now imagine snapping that rubber band over and over. For a while the band will keep its shape—its innate resiliency. But eventually, the rubber band will start to stretch and sag. Keep up all that snapping and you run the risk the band will fray and break. I am that rubber band.

It’s easy to berate myself for being weak. If I was made of stronger stuff, each snap to my emotional and physical self wouldn’t break me down. There’s a lovely man who posts regularly to the Facebook support group for neurosarcoidosis I belong to. He looks to be in poor health. He posted photos of himself in the hospital, some from physical therapy where he was hooked up to oxygen on a treadmill. No matter how dire the image, he writes a version of the same thing: “You got this. Keep fighting.” It’s that kind of spirit I fear I’ve lost.

But I’ve begun to wonder if perhaps all this isn’t so starkly binary, strength or weakness, health or sickness. Living with a chronic illness means you are pitched out of a world of blacks and whites and into a vast land of grey. Maybe I didn’t feel strong during the two months since I got out of the hospital and maybe I opted out of some challenges on a daily basis. But when I look at what I’ve been doing more often than not, I feel some hope for myself. Even though it’s been incredibly hard–and at times feels impossible–I’ve been rebuilding. I’ve started going for walks to regain some of my lost physical strength and stamina. I had a heart-to-heart conversation with Andrew about my hospitalization and listened without crying while he told me how hard the month was when I was gone. I’ve begun to go back to work, picking up my never-ending book project. I’ve started cooking dinner again—not every night, but when I can—and showing up for Andrew’s soccer games. Maybe I too “got this.” So all you folks in Chronic Town—and all those in the “normal,” healthy world—keep fighting.

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Here We Go Again

September 5, 2015 at 12:44 pm (Uncategorized) (, , )

Brace yourself. I’m about to do what I’ve done for so many of my past blog entries—apologize for being gone so long from this written world, explain whatever misfortune has recently befallen me because of the rotten chronic illness I’ve got, and vow to do better as a blogger.

So here we go. Again. I am sorry for being absent from this blog. But unfortunately I’ve been having quite a time of it. Starting in July, my sarcoidosis began to flare. The pain in my head quadrupled. I wasn’t able to get out of bed. To make things worse, a combination of the neurosarcoidosis in a particularly non-sexy manifestation called diabetes insipidus along with the side effects of a medication to control this weird symptom of weird disease caused my blood sodium levels to drop to dangerous lows. Who knew that sodium is necessary for proper cardiac and neurologic function? I sure didn’t, but I learned quickly, when my heart began racing so wildly that my defibrillator kicked in and paced my heart for nearly 48 hours straight.

I couldn’t cope at home. So I wound up in the hospital, for 33 long days and nights. They took very good care of me. My doctor and his team of nurses are truly extraordinary, both in their skills and their kindness. But, still, it was the hospital. I was hooked up to a pain medicine pump. I was poked and prodded, given intravenous steroids that made my moods erratic and mysterious. Even the intravenous drip from the pump couldn’t contain the exploding pain in my head. I’m sick of calling this particular affliction a headache. It so minimizes the catastrophe in my head—and the catastrophe it wreaks on my family’s life. (I just might have a contest to see who can come up with a better, more severe sounding word than headache for something that lands me in the hospital for over a month.) There were bright spots, of course. My sister came out for a week to help Jay and Andrew and me make it through this ordeal. So did my parents. Overall, the month was bleak. But I improved enough to make it home, and now I’m slowly regaining a little bit of all the strength and stamina I lost by laying flat on my back for 33 days. It’s millimeters, not miles, a day.

The problem with landing in the hospital for a month or two every year or two (or a couple of times a year, depending on the disease’s fickleness), is that it becomes routine for everybody else. Except me. At least 75 percent of the nurses remembered me. This was nice, but it made the whole process feel disarmingly familiar. Jay and Andrew immediately went into crisis mode. Jay figured out a way to sleep at home with Andrew and make it to the hospital by 5:30 AM for the doctor’s morning rounds. It involved sleep deprivation. Jay and Andrew exhausted our town’s to-go options and we ate dinner as a family in my room most nights. Jay texted all my close friends updates about my condition and I got lovely responses, which all included some version of, “It really sucks you are back there.” But my terrifying pain, my loneliness, my anxiety that I would never get out, never be able to get away from the rank beast of pain crouched in the corner of my brain, felt all new to me.

Coming home was hard. For a week, I literally could not stop crying when I spoke to people. Their kindness, especially, did me in. I had the shakes for a good while too, and I seemed to have picked up a nervous tremor that I cannot yet ditch. I had to face Jay’s exhaustion and Andrew’s pain at losing his mother for a month with no warning and no guarantee that it won’t happen again.

So while in one sense, I could plug this blog post into my familiar template, and I joke about “here we go again,” in another sense, this is all terribly wrong. This trauma was unique. It may fit the narrative flow to classify it as “another one of Rebecca’s long hospitalizations.” But for me, it was a month of pain, my month of pain, which was like nothing that came before it.

I’m tempted nonetheless to follow my old format and promise you that I’ll be back here, writing X days a week. But I won’t. I can’t. I am creeping back to a life not spent entirely in bed. I only cry occasionally now. But Jay, Andrew, and I are not back to normal. We are carving out a new place for ourselves in Chronic Town. I’ll write again when I can, and I’d love to hear from you. Keep me in your thoughts, please, as I try to figure out what recovery looks like.

So, what would be a better word for headache? Can you think of any word or phrase that does a better job encapsulating the severity and duration of mine?

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