It’s Lonely Having a Weird Disease

July 23, 2011 at 4:41 pm (Uncategorized)

I was listening to a low-brow mystery in bed last night. I was feeling lousy. The unholy trinity of neurosarcoidosis symptoms—vertigo, short periods of blindness, and a piercing headache—had decided to pay me a visit. After several years, I’ve learned that the best way to get through these bad spells is to distract myself. Mysteries—the less literary, the better—are particularly good at taking my mind off the electrical storm in my head. Stories of mayhem, madness, and destruction keep me from dwelling on my own pain.

Suddenly, through the haze of pain and the fog of pain medicine, I heard the narrator say, “sarcoidosis.” What? I rewound the book and listened more carefully. There it was again. Sarcoidosis. I hadn’t imagined hearing it. About midway through Bare Bones, Dr. Temperance Brennan (a forensic anthropologist who solves all kinds of crime by analyzing skeletal remains) discovers a corpse with sarcoidosis. Her colleagues think this murder victim had leprosy, but the wily Brennan correctly diagnoses sarcoidosis.

I bolted upright in bed, forgetting for a moment the headache’s roar, and hollered to my husband, Jay, “Oh my God! There’s sarcoidosis in my book!” I felt strangely happy that “my” disease had popped up in a bestseller. I didn’t even care that when she went on to explain sarcoidosis, the intrepid Dr. Brennan minimized the disease in the same way that drives me crazy when other people do it. She tells her colleague that most of the cases are benign and cure themselves, that most people with sarcoidosis don’t even know they have it until a routine chest x-ray illuminates the disease’s presence.

Jay came into the bedroom. “Wow! That’s really cool,” he said. He didn’t have to ask why I was excited at such a passing reference, or why I should care about any mention of my disease at all. Jay gets why it felt like a small vindication to read about sarcoidosis in a book that isn’t a medical textbook about granulomatous disorders. He knows how lonely it can feel to suffer from a disease that nobody knows or cares about. We’ve both heard too many times from well-intentioned acquaintances, “Now what is it that’s wrong with you/her?” or “You/She don’t really look that sick” or “When are you/is she finally going to get well?” They’re not malicious in not being able to recall the weird name of my weird illness. Sarcoidosis truly is a tough word to learn and remember, especially if you don’t have to say it. They’re not calling me a faker when they tell me I look perfectly healthy, or a malingerer when they ask when I’m going to be done being sick. After seven years of serious illness, most people think I should be either dead or well. That’s because my disease doesn’t follow the script of better known ones like cancer.

At the beginning of our voyage to Chronic Town, we were no different than these blundering acquaintances. I’d certainly never heard of sarcoidosis until I was diagnosed with it. For my first weeks with the disease, I took to calling it “sarca-whatever” because I couldn’t remember the odd word for the “condition” I was actually happy to have. Yes, you heard that right. I was too busy being relieved that I didn’t have lymphoma, which is what my doctors first thought was the reason for my terrible fatigue, chest congestion, and enlarged lymph nodes, to bother worrying about this sacra-whatever. My doctors told me I’d dodged the proverbial bullet by having sarcoidosis instead of lymphoma. They assured me that though I’d keep feeling tired for a while, and my hacking cough might persist, eventually, the sarca-whatever would spontaneously remit—and I’d be able to go right back to being a new mother, an emerging writer, and a dutiful wife.

If only. My sarca-whatever did not go away on its own accord, as promised. Instead, it devoured me. I turned out to have the chronic and aggressive form of the disease that doctors seem to forget exists, one of those 20-40% of cases (like so much of sarcoidosis, there’s a lot of uncertainty around these numbers) that doesn’t spontaneously remit. Sarcoidosis moved into my heart, my liver, my brain, my joints, my skin, and my bones. In an attempt to arrest its potentially deadly course—or at least stall it—my previously optimistic doctors threw an increasingly toxic stew of medications at it, and into me. Ironically, I ended up getting two of the same chemotherapies that are used to treat lymphoma. With lymphoma, at least there’s a chance these drugs will cure it. With sarcoidosis, however, the hope seems to be that the chemo might “manage” it.

I’m not trying to get into a “my disease is worse than yours” contest with lymphoma here. Everyone in Chronic Town has a lousy sickness. There’s no profit in thinking that sarcoidosis is more dire than some other disease. It sucks to be chronically or seriously ill—whatever the cause. Sickness is lonely. It threatens to take away everything familiar—ultimately your very life, but first your work, your body as you know it, the dynamics of relationships, and your time. Whether it’s more lousy to be inflicted with a disease that no one’s heard of isn’t something I’m really in a position to evaluate, having so far (thankfully) avoided the poster children of cancer or muscular dystrophy.

What I can say for certain is that I wish more people knew about sarcoidosis. Doctors, first and foremost. But the rest of the world, too. Like I said, it can be isolating to fight for your life. I think it’s extra isolating to be fighting for your life against a foe that no one else has ever seen, thought about, or understood. I imagine it’s something like having a son in the special forces. You wave goodbye as he heads off for…where? All the other Moms are tying yellow ribbons around trees and sending care packages off to Iraq or Afghanistan—and hopefully deriving at least a little support from knowing they’re unified against a common enemy—and you can’t tell anyone that your boy is in North Korea or Saudi Arabia, or even that he is fighting at all.

The disease equivalent of Iraq and Afghanistan is breast cancer. The campaign against breast cancer is one we’re all aware of and all engaged with. That’s a good thing. We should be working very hard as a society to fight breast cancer. I don’t begrudge a single dollar spent on breast cancer research, and I show up to support the Race for the Cure every year I’m well enough to be out of bed and walking. I just wish sarcoidosis had its own version of the Race for the Cure. I imagine it must be, well, nice, for a lack of a better word, to know that so many people are working to cure your disease and admire your courage in fighting it. It must be breathtaking to participate in the Race for the Cure as a breast cancer survivor. To stake your claim as a warrior against a terrible disease—and have your whole tribe out cheering you on—must spur you on to keep fighting, to make it to the next race the next year. Those of us with sarcoidosis—or lupus or rheumatoid arthritis or multiple sclerosis—don’t have this.

Let me be clear. I’m not for a second suggesting that we take research dollars or community support away from breast cancer to give them to sarcoidosis. No way. At a practical level, I’m probably going to need all those resources someday because my cocktail of immunosuppressants makes it exponentially more likely I’ll get breast cancer in the not-too-distant future. But beyond that—way, way, way beyond that—is my belief that we all have a moral obligation to fund research and care for all diseases. As a nation, we don’t feel very rich right now as Congress and the President squabble over the debt ceiling. But I don’t for one instant think we couldn’t or shouldn’t scrounge up funds for more cancer research—and toss in some money for sarcoidosis and other “weird diseases.” If we can afford to bail out Wall Street bankers and gigantic insurance companies, we can fund a lab here or a disease-awareness campaign there, and some clinical trials everywhere.

It’s logical that diseases that threaten more people will get more attention. I understand that. However, understanding it doesn’t make it less lonely. I get drug infusions (the lymphoma ones) twice a month at the Cancer Treatment Center at the local hospital. There are always fliers posted in the waiting room for support groups for cancer patients, or support groups for family members of cancer patients. Lately, there are fliers offering free yoga classes at our town’s new gym for cancer patients or cancer survivors. I’ve been wondering if I could show up and explain that while I don’t have cancer, I’m still pretty sick and I’d love to learn yoga too. Would I be crashing the cancer party? Or would they let me sneak in?

I understand why Helena’s only hospital doesn’t have a support group for sarcoidosis. It’s not like they’re trying to exclude the auto-immune set. There are lots more cancer patients than sarcoidosis patients. But that doesn’t stop me from craving support. My family and friends have learned along with me how to live with sarcoidosis. We’ve figured out through trial and error how to stay alive in Chronic Town. As hard as they try to be with me in sickness, though, they’re still not sick. While they can sympathize and empathize with me, they simply can’t get it in the same visceral way. That’s why I launched this blog. I wanted to connect with my neighbors on our dimly lit Sarcoidosis Street in Chronic Town. I wanted to offer support and derive support.

As much as I value this on-line community, it’s still a special kick to meet someone with sarcoidosis in the flesh. This happened a few weeks ago at a good friend’s wedding. One of the other guests was D., a woman with cardiac sarcoidosis. She’d read my blog and we had exchanged e-mails before. But actually laying eyes on her and talking about our shared experiences for a few minutes provided a sense of connection that was different. We swapped stories and pulled our collars aside to show each other our scars from our implanted cardiac devices (a pacemaker for her, a defibrillator for me). I walked away from the reception feeling buoyed. D.’s fought this disease longer than I have. She’s kept working in spite of a nasty case of it. She was funny, smart, active, and tough.

The best part of meeting was D. was getting to laugh about sarcoidosis and the craziness it brings. On my own, I do all too well feeling sad, overwhelmed, persecuted, lonely, lost, exhausted, and pitiful about being sick. Just a few minutes of laughter carried me for days. It’s hard to laugh on your own.

When it’s just me and my disease, it’s easy for me to lose all perspective. I forget that I exist in a context, especially when I’m going through a tougher patch like last night when the pain felt unmanageable. I need help to remember that there are better days ahead, that this too shall pass, that it can always be worse, and I’m not alone.

We don’t fight wars or fight diseases—or solve murders—on our own. Even Temperance Brennan needs help solving her murders. She’s got a sexy Montreal cop on her side that shows up at just the right moment to bail her out of a crisis. We survive by knowing that someone’s got our back.

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Can You Have A Mid-Life Crisis in Chronic Town?

July 16, 2011 at 5:55 pm (Uncategorized)

I’ll be turning 40 in 40 days. Not that I’m counting.

How did this happen? It seems like just a few heartbeats ago, I was 100 pounds lighter and 14 years younger, walking down the aisle to meet my Jay at the altar. Wasn’t it just yesterday that I held my squawking baby boy, Andrew, for the first time? But no, that was already more than 7 years ago.

How did I go from feeling like I was just barely launching my life to reaching its mid-point?

I know, I know. My realization is nothing special. Life goes by very quickly. We all watch decades swoosh past in the blink of an eye. We all don’t want to get old. We all can’t keep up with the roaring currents of time. At least a thousand writers—far more eloquent than this lowly blogger could ever be—have expressed how the grinding maw of time chews through our best years.

Time passes. Time is elusive. Time accelerates when we want it to slow down.

And time is different in Chronic Town.

I was 33 when I moved to Chronic Town. Andrew was three months old. I was filled with creative energy and ready to start taking my writing seriously. I’d spent my adolescence and twenties figuring out who I wanted to be. I thought it was my time to get going.

That was seven years ago—and also three major surgeries, two implanted medical devices, dozens of tests, three years of different chemotherapies, months stuck in bed, weeks stuck in the hospital, thousands of miles of medical travel, and thousands of miles of medical travel ago. I’m still ready to start taking my work seriously, to live the vision I saw for myself. But I’m turning 40, not 20. My husband and my friends have established solid careers and are saving for retirement, not figuring out how to break into their lives.

What the hell happened to my life? I had to fight for it so fiercely that I lost track of it. While Jay was at his office becoming adept at his job, I was getting infused with Cytoxan, a chemo drug derived from mustard gas (yes, you read that correctly). When I say that I lost two years of my life to the Cytoxan infusions every-other week, I’m not waxing metaphorical. Those months were consumed by my illness and the terrible side-effects chemo carries.

That feeling of lost time—as if I’ve been trapped in a time warp—isn’t just from the years of chemo. Chemo time was grueling, but I’ve mercifully blocked out much of it. (Really, how many memories of barfing up bile or of sleeping all week do I need?) But my years in Chronic Town when I wasn’t enduring Cytoxan have passed just as mysteriously. I think it’s because the experience of chronic illness can be so disorienting and confusing. Becoming sick with a chronic or serious illness is more dislocating and disruptive than moving to the other side of the world to live on a tiny tropical island. I know because I’ve done both.

I’ve also wasted time in Chronic Town. It’s time I can’t get back. For a long while, I waited to get cured so that I could return to my “real” life. That wasn’t an entirely conscious or deliberate choice. But I spent a long time putting off learning how to live in Chronic Town by yearning for how things used to be. For example, before sarcoidosis, I was an avid hiker. Jay and I loved hiking together. Walking—and talking—side by side was our exercise, our special time together, and our way of interacting with our world. We hiked up Mount Helena after work when we lived in Helena; we bushwhacked through the jungle in Palau; and we hiked like lunatics when we were on vacation in Hawaii, New Zealand, or Thailand. When I suddenly became too sick to hike, I stopped walking at all. Rather than learn how to live with new limitations, I simply quit. “I’ll get back to hiking when I’m well,” I told myself dozens of times. I engaged in different versions of this behavior for too long before it finally sunk that the “chronic” in chronic illness means what it says – the disease isn’t likely to go away. Keeping myself on hold wasn’t stopping time. I was merely not living as a denial strategy.

In my defense, I’ve got to say that it’s difficult to fully inhabit your life when you’re sick. While it’s true that I could have done a better job of walking around the block with Jay instead of waiting to be well enough to trek in Nepal with him, it’s equally true that it’s nearly impossible to walk around the block when you’ve got a piercing migraine, you’re vision is blipping out, and your vertigo is so bad that you fall over trying to get from the bed to the toilet. Sometimes it’s not a question of adjusting your mindset. Sometimes your health—and thus your life—deeply sucks.

I’ve worked like a demon to learn to appreciate the “small” joys of life—like drinking a cup of hot Earl Grey tea with just the right amount of milk, or sitting on the deck with Jay and watching the sun slink below the horizon on a warm summer night, or inhaling Andrew’s smell of sunscreen, mown grass, boy sweat, and shampoo as I lie next to him. I’ve learned these small moments aren’t small at all. Appreciating the thousand blessings each day brings has been sarcoidosis’ great gift to me. But I still miss the “big” joys of life—finishing a long, hard hike, wandering Bangkok’s alleys in search of the best green papaya salad, getting an article accepted, or becoming respected and successful in my profession.

I also yearn for easy stretches when I don’t have to try so damn hard. I’ve learned to love the details of living, but I wonder what it would be like to live without chronic pain, regular chemo infusions, periodic blindness, endless exhaustion, and the constant, gnawing worry that the disease will flare-up, worsen, or kill me. What would it be life to wake up with energy? What could I accomplish if I didn’t have a neurological disease?

Before I start sending out engraved invitations to my personal pity party it’s time to stop and think. Aren’t these questions—and the anxieties that underlie them—the essence of the mid-life crisis? Don’t we all sit up at 40 (and then 50 and 60) and wonder, “How did I get here?” or “Do I really like it here?” or “Is this all there is?” or “What if…?”

One blog reader e-mailed me long ago that whether or not we’re diagnosed with a chronic or serious illness, we all live in Chronic Town. She’s right. Although we don’t always want to face our diagnosis, we’re all living with one: it’s called life. There’s never enough time or energy to become everything we want to be. Life is too short; it’s unpredictable; it’s unfair; it’s needlessly difficult.

When I complained to a friend recently that I was feeling professionally unaccomplished and that I wanted back some of the years sarcoidosis took, she smiled and said, “You must be feeling better.” I gave her a blank look in response, so she went on, “You were too sick to worry about work last year.” She’s right. I was. And the year before that, and the one before that. I suppose it’s a sort of luxury to have a mid-life crisis. You can’t worry about your résumé or the meaning of your life when you’re losing it, or fighting for it.

As if to teach me to count my blessings, I had a terrible week of vertigo, blind spells, and headaches. It lifted, but I was left weak and frayed. And very thankful that the pain had ebbed, that I was alive, that the sun poured through the blinds, that Andrew came to kiss my hand, that Jay brought me tea, that I can write and think.

So I’ve decided to postpone my mid-life crisis until my 50th birthday.

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