Dem Bones

March 31, 2014 at 4:53 pm (Uncategorized)

“You really have bad luck.” This—or some version of it—is something I’ve heard quite a lot of since I fell down a flight of stairs and wound up with a broken right ankle to go with my broken left foot.

At first, I agreed wholeheartedly. I have rotten luck. Not only do I have sarcoidosis, but I have a particularly pernicious form of the disease that affects my lungs, heart, brain, liver, skin, and bones. As if it weren’t bad enough to have a lousy disease, the stupid sarcoidosis has hollowed out my bones. Hence the broken left foot.   What horrendous luck then—on top of all this other unluckiness—to crash down fourteen stairs and unceremoniously bust my right ankle so that I’m stuck in a wheelchair to get around my own house.

Focusing on my extraordinary unluckiness did wonderful things for my sense of self-pity. But not much else. If my goal in life is to feel sorry for myself, I was doing a great job.

There are two main problems with this approach. The first is that I have ambitions other than perfecting my “woe is me” outlook. I have a book to finish, an article to write, and a blog to maintain, not to mention a 10-year old to raise and a husband to love. Once a pernicious case self-pity sets in, I have trouble doing anything but feel sorry for myself. Self-pity is the Ebola virus of emotions: it reproduces rapidly and colonizes an entire personality—to an extremely bad end. The second problem is that it’s not even true that I have ungodly bad luck.  

What I do have is a bad case of connectivity. What do I mean by this? The run of troubles I have are all connected to each other. When you think about it like this, it actually kind of makes sense that I’m in a wheelchair right now. Here’s how it happened: I got stuck with a rare case of a rare disease. That’s definitely unlucky – I won’t argue that one. But what follows from that is a pretty natural case of cause and effect. The disease invaded my bones, which helped weaken them. To treat the disease, doctors put me on massive amounts of prednisone, which has the chief side effect of causing weight gain. I was on a lot of prednisone, so I gained a lot of weight. (Being bed-ridden because of the disease in my brain also didn’t help things on that front.) Carrying 60 extra pounds doesn’t advance the cause of hollowed bones. Nor does another side effect of prednisone, which is to decrease bone density and weaken ligaments and tendons. Given all this, it makes sense that I’d develop a significant stress fracture in my left foot.

But what of my fall down the stairs? Didn’t luck cause that? Maybe. Or maybe not. As she put my left leg in a cast, the doctor warned me not to put any weight on the broken foot. “Otherwise it won’t heal,” she said. This left me to toodle around on a knee scooter, if the surface was flat, or on crutches, if I needed to negotiate stairs. I should also mention that the sarcoidosis in my brain causes bouts of severe vertigo and occasional vision loss. I am not the most steady person on the best of days. Put me off-balance, on crutches, trying to get downstairs to make my kid happy, and it seems more like inevitability than lousy luck that sent me flying down the stairs and winding up with a broken ankle.

I’m not trying to play cute games with cause and effect here. This feels important to me. Rather than cast myself as a victim of dire fate, I’d like to see myself as part of a chain of connectivity. It’s less bleak, and I can live a little easier when I think of what happened in this light—that it’s all connected.

Maybe because I’ve been thinking too much about bones, I’ve had the old song, “Dry Bones” stuck in my head. It’s also a paean to the idea of connectivity: “Toe bone connected to the foot bone/Foot bone connected to the heel bone/Heel bone connected to the ankle bone/Ankle bone connected to the shin bone/Shin bone connected to the knee bone/Knee bone connected to the thigh bone…Dem bones, dem bones gonna walk around…Now hear the word of the Lord.”

It should only be a few weeks until my dry—and connected—bones are gonna walk around too.

I hope.

What’s connected in your life? What sequence of cause and effect has brought you to where you now are physically or emotionally?

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Fourteen Steps Down

March 26, 2014 at 12:10 pm (Uncategorized)

Last Wednesday night I fell down a steep flight of stairs and broke my right ankle.

This leaves me in a pickle, since my left foot is already broken and I’m not supposed to put any weight on it.

Here’s how it happened. Jay was working late, and Andrew I decided to order a pizza and watch a movie. This meant I had to make it downstairs to the TV den. No problem! I’d negotiated up and down those stairs a few times before on crutches. So I handed Andrew the pizza, parked my nifty knee scooter (which conveys me around flat surfaces), and headed for the stairs on my crutches. Andrew was right behind me.

On the second of fourteen steps, I caught the bottom of my right crutch on the stair’s carpeting. “This can’t happen,” I thought, as I teetered out and above the six foot drop to the bottom. It happened. I went sailing down the steps, frantically trying to scratch a handhold on the banister. But I couldn’t. I crashed at the bottom of the stairs.

After any accident, there is a suspended moment of silence. Andrew broke it with a very small voice and asked, “Should I call 911?” I began to flail in the narrow stairwell and try to get up. “I’m fine. I’m fine. I think I’m fine,” I said, as I tried to get up and prove to him I was alive and well.

But I knew right away something was wrong with my ankle. It had made a horrible cracking sound when I landed. With any attempt at moving it, pain shot from my ankle up into my thigh. “Shit. Shit. SHIT!” I thought. My mouth tasted metallic from fear.

“Mom, you rode those stairs down! You stayed upright almost the whole way,” Andrew said. He was standing next to me now, and sounded impressed. I was not feeling impressive.

Since I broke my right ankle, it’s been really hard to do anything—get to the bathroom, roll out of bed, get dressed, or make it to the table for dinner—with two broken lower limbs. One is in a plaster cast. The other is in a giant orthopedic boot. I haven’t yet found a pain-free way to get around the top floor of our house. (I don’t think I’ll ever venture near those stairs again.) We have a walker, the knee scooter, a wheelchair, and, of course, those damnable crutches on hand. But none of them is quite right. Getting anywhere hurts a lot and is frustrating.

I’ve got another 4 weeks in the plaster class for my broken left foot, and a long road to rehab the broken ankle in the giant boot. I had my first physical therapy appointment yesterday.

Truthfully, I’m feeling overwhelmed, sorry for myself, and not quite sure how I’m going to get through the next month. I’d like to tell myself to take it one step at a time, but that doesn’t quite cut it.

My look for the next month.

My look for the next month.

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Third Wheel

March 11, 2014 at 1:13 pm (Uncategorized)

It’s hard to be practically useless. My left foot has been stuck in a cast for the last two weeks, and I’ve got at least four more weeks to go in it. I could deal with gimping around in a cast, but the doctor who diagnosed my latest sarcoidosis-related stress fracture also forbade me from bearing any weight on my broken foot. This means I’m on crutches or my spiffy rented knee scooter for the entire 6 weeks.

My conveyance for the next month

My conveyance for the next month

Here’s a short list of the things I can’t do when confined to the cast/crutches/scooter: drive, move while holding anything in my hands, go outside when it’s snowy or icy, take a shower without a plastic bag on my foot. Here’s another short list of the things that are difficult to do: go up and down stairs, cook, move anywhere quickly. Andrew and I have had to rely on Jay to do everything on these lists. Though they are short lists, they encompass almost every detail of daily life—especially life with a young child. Jay has been doing all the dropping off and picking up at school, all the cooking, all the dishes, all the laundry. He already does so much under “normal” circumstances, when I’m “just” sick with a chronic and unpredictable illness. Did I mention he also has a busy and stressful job that often requires he work extra hours?

I’ve mostly done a pretty good job of accepting that this is our reality—for the short term. I say “thank you” to Jay at least fifteen times a day. When he has to skip work to pick up Andrew or take me to an appointment, I try not to feel too guilty and simply express my appreciation to him. I figure that having a nervous breakdown about feeling useless isn’t going to make Jay’s life any easier.

Then, last Friday, we upped the ante. Long before I learned about my broken foot, we scheduled Andrew’s 10th birthday party with his friends. Andrew decided that what he wanted most was a sleepover party with four of his closest friends. He thought it would be fun for them to play some basketball and go swimming at the gym after school. Then they’d come home, eat a three course Mexican meal, hang out downstairs playing video games, and bash a piñata.

There was not much in Andrew’s itinerary that allowed me to help. When five boys came rushing into the house, hungry, after a couple of hours at the gym, I couldn’t greet them with food, as I normally would. When five boys got a little rambunctious downstairs with our giant stability balls, I couldn’t run down there and sort things out. When it was time to round the pack up to get ready for bed, I couldn’t do much but roll around behind them.

Still, I wanted to be helpful. But I couldn’t actually be helpful. I felt left out and agitated. All I could do was “suggest” Jay make the second course of the dinner a little more quickly than he was, or intervene a minute earlier when we heard an ominous crash from downstairs. In other words, I hung around the fringes of the party being a grumpy nag. “Just go lie down and rest your leg, sweetie,” Jay kept saying. But I wouldn’t. I couldn’t. My son was having his 10th birthday party, and I was going to be there and I was going to be helpful, so help me God. Later I apologized to Jay, for the nagging and my emotional disintegration. “It’s hard not be able to help,” I told him, “Especially when it involves your kid.” He forgave me. And I thanked him for the seventeenth time that day—for the hundreds of things he did for me, and for throwing such a lovely party for our son.

Surviving in Chronic Town—surviving in any town—means accepting help. As much as we like to tell ourselves that we’re independent, that we can do it all on our own, it’s just not true. In many ways, sarcoidosis has helped me accept my humanity. Before I became sick, I was very invested in being strong, in doing things on my own. All it takes to shatter this myth is a broken bone or a messed-up immune system—or having a child. We can’t go it alone. It truly does “take a village”—to raise up a kid, to survive sarcoidosis, to make it through the day. After 10 years in Chronic Town, I’m still learning to just say “thank you” when someone who cares for me provides the sustaining help I need.

Thank you Jay, for keeping me alive, for being my best friend.

What about you? Is it easy for you to accept help?

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It’s My Life

March 4, 2014 at 12:01 pm (Uncategorized)

I think I’ve finished the first draft of the first chapter of my book. Actually, it’s my third draft of that first draft, each covering the same time period. But it’s the first draft of my memoir with its “new” (over 18 months old) structure.

Writing this book is the one of the hardest thing I’ve ever done. It’s not just that it’s difficult as a craft and a punishing amount of work. Stringing together a long narrative, trying to develop themes and characters, keeping track of what I want to say and what I’ve already said are all new to me. I’m an essayist and a journalist by training. I feel like I’ve been dropped into a maze, blindfolded, with a broken compass all I have to get me out.

“Have faith in yourself,” I tell myself. But faith has never come naturally to me. Nor apparently does self-confidence. It feels like every word is shit, that my dialogue is clunky, that the whole thing is ponderous and boring.

Without faith or self-confidence what do I have? Grit—the same thing that propels me through two chemotherapy infusions a month and periodic weeks in the hospital. I have to write this book. I feel like I can’t move on without writing it. I’ve thought about it, dreamed about it, talked about it, worried over it. I can’t cut my losses and start something new. I just can’t.

I recently finished an essay in the New Yorker about Diana Nyad, the 66-year old woman who successfully swam from Cuba to Florida on her 4th attempt. She was 30 the first time she tried—and failed—to make the swim. “You’re never too old to chase your dream,” she said, when she stumbled out of the ocean, victorious at last, after swimming three days and three nights in the open sea. She also noted that she’d gotten kind of stuck before she was able to finish the swim. “I was very engaged in examining the past,” she said.

Why is it so important for me to write this book? Some of it is that I said to myself that I would, and I’ve dreamed of doing it – and of being done with it. I’m 42 years old with a chronic, sometimes debilitating disease. If not now, when?

My progress hasn’t been slow because I’m lazy. Or at least not just because I’m lazy. Since August, I’ve been in the hospital for 10 weeks, much of the time in so much pain and on so many pain medications that I was lucky to be able to remember my own name. I was not in writing shape. For the past four years, I’ve been getting at least monthly doses of one kind of chemotherapy or another. There are days when I’m too sick to get out of bed, much less write. Sometimes, these all seem like very reasonable reasons to give up on the book. But they’re not. My book isn’t simply about finishing a task I set out for myself. It’s not just about being gritty, or not letting the disease get me down.

Writing this book is about writing my own story. In darker moments I believe the sarcoidosis has taken the last 10 years from me, that one day I was a new mother with my life getting started, and the next I’m a middle-aged semi-invalid with a lot of broken dreams and unmet goals. This can’t be my story. Writing my book is reclaiming, disentangling my story from the illness’ version of me. Writing my book means that the last decade wasn’t solely about gaining weight, visiting doctors, watching helplessly as the disease flitted from one organ to the next. In writing my story, I can make my own meaning of those years. If I’m good enough and diligent enough I can convert them into something beautiful—into something that grabs at the hem of art.

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