The Body Eclectic

March 22, 2017 at 9:38 am (Uncategorized)

I’m in a bigger body these days. I gained thirty pounds during my last three months in the hospital and thirty more during the three month hospitalization before that. That’s sixty pounds. Which is a lot, but then I’ve gained and lost dramatic amounts of weight before. What makes these extra pounds—particularly the last thirty—feel so cumbersome is that I gained them so quickly, all while flat on my back in a hospital bed. I didn’t get accustomed to my new body gradually over time, gaining a few pounds here, a few there. It’s as if some evil-eyed fairy godmother waved her warty wand, and voila, I’m fat again. I’m clumsy in my new, stretched out skin. I gauge spaces I might fit into based on mental dimensions that no longer match my physical ones. I’m constantly bumping into things, knocking over things as my brain scrambles to recalibrate. I also catch sight of myself in mirrors and do a double take. I’m not used to my wider face, the swath of flesh under my chin. With a pause, I recognize myself.

Surprisingly—for me—I haven’t fallen into full-bore self-loathing (well, most of the time.) What I feel more acutely is melancholy for what I cannot do with this extra flesh. A few months ago, I was hiking up to seven miles and even summitted Mt. Helena, the 6,500 foot mountain that looms above my little city. I was going to the gym regularly and riding the bike for an hour at a high intensity. I wasn’t svelte by anyone’s standard, but I was more functional. I miss that. I know I’ll get back to it, that what I need to do is start showing up at the gym and getting back on the bike for ten minutes and building up my stamina. I’m not there yet though. Right now I’m still adjusting to being up and around after so many weeks in the hospital.
When I talk about my weight with Jay, he usually says, “Now there’s more of you to love.” Back when I first gained a lot of weight on high doses of prednisone, I used to shrug off what he said and focus on hating myself. I wanted my skinny, athlete’s body back. I saw my new softness as weakness and could only imagine that others felt the same way. That was years ago, before losing one hundred pounds and gaining most of it back. Maybe I started to realize it’s not my fault that I’m heavier. It’s not like I chose a horse dose of prednisone or to spend a cumulative total of years of my life in a hospital bed.

But my new attitude towards my body is more than tolerance. I’m starting to see the steel behind the fat. My body is a survivor. It’s endured countless procedures, the indignities of surgeries, the years of illness and treatments. A defibrillator bulges beneath a gash of scar on my chest. I used to find this ugly. Now I see the beauty and the strength of my body. It’s fought for me, endured for me, carried me for thirteen long years in Chronic Town.

I miss hiking and my skinnier jeans. But I refuse to engage in self-hatred to get back to them. I’ll lose some weight by returning to daily life. I’ll find my way back to the gym. But I’ll do it with love and dignity. I’ll do it in this body and with this body.

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The Other Side of the Bed

March 12, 2017 at 8:34 pm (Uncategorized)

I was back in the hospital two weeks ago, two floors up and one room over from where I’d just spent nearly three months as an inpatient. The walls of this new room were the same deliberately soothing green; the floors were identical faux wood. Even the view of the mountain looming behind the hospital was familiar. Nevertheless everything was different—and shockingly so. I was on the other side of the bed. For once I was not the patient. I was a caregiver.

Like so many life-changing events, this one started off innocuously. To be specific, it started with a small bruise. Andrew accidentally got kicked in the shin during one of his intramural basketball games. The three of us thought nothing of it. Six days later, though, Andrew started having problems walking. His leg swelled, became hot to the touch, and broke out in an angry rash. Jay took him to the walk-in orthopedic clinic. The doctor thought it was probably a bad bone bruise. “Follow the RICE protocol,” he told us. So we dutifully rested, iced, compressed, and elevated the leg. It swelled more overnight, and the rash got even angrier. He spiked a fever. The next day Jay brought him to our pediatrician’s office. I don’t do pediatrician offices anymore—not with my compromised immune system—and anyway I was tired. I was nearly asleep in an early afternoon nap when Jay called. “They’re admitting him,” he said. “They’re what?” I asked, trying to push back my drowsiness and understand what he was saying. “They’re putting him in the hospital.”

I don’t think I’ve ever left the house so quickly. I stumbled into my clothes, remembered to grab my purse, and drove down the hill to the hospital with my hands sweating so fiercely I could barely hang onto the steering wheel. I arrived to find Andrew looking so small in his hospital bed. He’s a big kid, but he was shrunken in on himself. His arms were swathed in warm blankets to try to pop up his lackluster veins for an IV. He wasn’t crying, but I could tell it was taking all of his control not to. “I hate needles,” were the first words he said to me, through trembling lips. Since his hands weren’t accessible, I went to the foot of the bed and hung onto his feet with what I hoped was a reassuring grip. “I’m so sorry,” is all I could think to say. I probably should’ve launched immediately into a pep talk about how everything would be OK, and that yes, it sucked to get an IV but he would manage. I found those words later. But in that moment I just felt so profoundly sorry that he was in that bed, filled with pain. I would have done anything to change places with him. It’s my role to be in hospital beds, not my 13 year old son’s. He’s supposed to be healthy and invincible. But there he was, a little lump on the institutional sheets.

While we waited for the nurses, Jay filled me in on what I had missed. Andrew had a severe case of cellulitis. Somehow—through some small fissure near the bruise though we’d never actually seen a skin break—bacteria had gotten into his lower leg. He needed IV antibiotics, but for how long, the doctor didn’t know. Before they could ascertain the scope of the infection, Andrew would have to get an MRI to make sure the infection hadn’t gotten into the bone. “It’s not fair,” Andrew whispered as Jay went through all of this. “I know. I know,” Jay and I both said. “It’s not fair, but you just have to hang in there.”

A trio of chirpy nurses hustled in. It was time to start the IV. Unfortunately, Andrew inherited my veins. They circled around him, assessing his arms like cuts of meat. “How about here?” one asked, poking at the top of his hand. “Nope,” said another. “I like this one.” They brought in fresh warm blankets. They gently slapped his hands and arms to get the veins to “pop.” They pinched and prodded. It was all to no avail. Andrew’s veins just suck. “OK, we’re going to go for it,” the head nurse told him. Their first attempt was on the top of his right hand. The needle went in; they finagled the IV into place. Blood bubbled up and out. But it was no good. They tried again, this time behind his left elbow. Nope. How about on top of his right hand? No, not there either.

Andrew was stoic through all of this. He traded quips with the nurses, didn’t shed a tear, and even stopped flinching when yet another needle went into him. However, I found the whole ordeal impossible. I’m no stranger to the drama of IVs. The last time I was in the hospital, I “blew” three IVs in an hour. They eventually had to install a picc line (a kind of semi-permanent IV) because of all the problems they were having with me. I didn’t flinch or cry either—when it came to my arms and hands being stabbed with needles. But watching Andrew endure this was unbearable. How can you stand watching someone you love being hurt? I stopped the nurses before they went for Attempt Number Four. “What will be different this time?” I asked, with more hostility than I anticipated. They decided to wait for the MRI nurse to install the IV. “She’s a pro,” they said. I clenched my jaw and held onto Andrew’s foot. “I’m so sorry,” I told him when we were alone. “It’s not your fault, Mom,” he said. I knew that. I was just so damn sorry for him.

The indignities kept coming. The MRI nurse was able to get an IV started (on the first attempt), but Andrew still had to get through the MRI itself. I’ve had literally dozens of these diagnostic tests. It got to the point that I trained myself to be able to think of all the rhythmic clanking and clunking as soothing and was able to fall asleep in “the tube.” But I worried about Andrew. He seemed so small, and the whole medical industrial complex into which he’d fallen so massive. Of course he made it through the MRI, just like he’d make it through the 5 AM blood draws, and being awakened every four hours all night long. When he blew his IV, he made it through getting a picc line placed, even though—unlike me and most patients—he went through the whole process stone cold sober. He also endured bad news. The local radiologist thought Andrew’s bone was infected, so the doctors braced him for a long hospital stay and then weeks of antibiotics. I gnawed my fingernails down to the quick and worried.

Being on the other side of the bed in the hospital was all about managing worry. It’s an entirely different kind of worry than I experienced as a patient. Of course I worried about myself when I was in the hospital bed. I was in blinding pain and nothing the doctors did seemed to help me. And of course I saw the worry that my loved ones felt for me, and I felt bad for inflicting this on them. But it was an entirely different matter to feel the whipsaw force of worry for Andrew. I lay awake in the hospital at 2 AM, stretched out on the pullout “bed” the hospital provided. My sister and my mother slept for weeks next to me in the hospital. I knew it was bad—the “bed” was beyond uncomfortable, the IV pump always took up beeping and blaring in the middle of the night, and the nurses and phlebotomists sauntered in whenever they felt like it, invariably flipping on the harsh fluorescent lights. But I never knew how paralyzing and enervating and all-encompassing the worry could be. I stared out into the not-quite-darkness of the hospital room and tuned my worry like a violin string. How could this be happening? How could this be happening to Andrew?

As quickly as we were pitched into our medical drama, we were pulled out. Our local doctors sent the MRI report to a pediatric infectious disease specialist in Seattle who determined that Andrew’s leg bone was not infected. Since he responded so well to the three days of IV antibiotics, they let him out barely 72 hours after they’d put him in, on a hefty dose of oral antibiotics. I was relieved when we got this good news, but I couldn’t just shut off my worry.

“How did it feel to be in the hospital and not the patient?” Jay asked me the other day. Horrible, terrible, painful, helpless. But I couldn’t access descriptive adjectives. All I could say was, “bad.” Language shrinks in the face of turmoil. For the most part, life is back to normal. Andrew returned to school, and we’ve returned to nagging him to make up all the work he missed. He’s even been back to the gym to play some more basketball. But I feel changed by what he went through. I now have a small sense of what life is like for Jay and Andrew, my parents, my sister, my brothers, my friends for the past 13 years in Chronic Town. To watch someone you love endure pain transcends language. But it is the essence of love—to worry, to watch, to stand by.

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