Within five minutes of meeting a new person, my mother will happily divulge the innermost details and dysfunctions of my health life.
“She didn’t used to be able to walk to the mailbox,” she says to my friend as we stroll along the rail trail with our Yorkies. I guide my dog, Bridget, away from a pile of turds and try to change the subject, to talk about the weather or my chili recipe or the Mountaineers’ latest football win, even though I don’t care about sports involving balls. I was a gymnast. That’s what I did when I was a kid. Before.
But it’s the after my mom wants to talk about. After I got sick. “When she started falling off the balance beam at gymnastics practice, I knew something was wrong,” Mom tells the hairdresser as he puts in my highlights. “Beam had always been her best event.” I hide beneath the foils, biting my fingernails. I count all the tiles I can see on the floor. I ask my hairdresser about the feasibility of layers given my face shape.
In conversation with the guy behind the counter at Blockbuster, my mother says, “The doctor was iffy about her traveling outside the country with her immune system.” I’m not even kidding. She says this to the Blockbuster guy. “The treatments she’s on only cover her for American germs,” she explains, but I’ve grabbed my copy of Season Two of The Tudors and hightailed it out the door.
My mother makes my private public. The entire state of Ohio, half of West Virginia, and a good portion of North Carolina know the details of my 25-year chronic illness. They’ve heard about how the whole family got the flu, only I never recovered. They’ve heard about the three years it took to get a diagnosis of Chronic Fatigue Syndrome. They’ve heard about how incredibly misleading the name is, how it doesn’t begin to describe the effects of the disease.
But here’s the thing — they didn’t hear it from me.
* * *
I have a scar above my left breast. It’s an ugly thing, a keloid, thick and worm-like. When I was a teenager, on intravenous gamma globulin treatments every two weeks to boost my immune system, I had a port inserted when my veins crapped out. The doctor told me the procedure would leave a scar like a thin line from a lip pencil. It didn’t. For a long time, I thought no man would ever love me, hideously deformed as I was. This preoccupation with the visible, outward sign of my illness seems silly now, years later, now that I’ve been loved, am loved. The scar is one of my stories, something I’ll share when my new boyfriend, José, asks me. (Shrapnel, I would tell some men, the ones I didn’t want to let in.) I don’t like to talk about it. I don’t like sharing the ugly story behind it. But at the same time, I want José to know.
I hesitate to talk about CFS, be it with the Blockbuster guy or my hairdresser or even my friends. My boyfriend. It’s no fun to think about, first off. It’s no fun at all. There’s shame involved, and guilt, and doubt. But I guess what you need to know is that not-fun part, what living in my body used to be like, and what it’s like now, and why that difference is so glorious. Why I just want to revel in the almost-normal, in the I can walk on the rail trail and the I can drive myself to Blockbuster of it all. Because it didn’t used to be like this. Not even close. Not even at all.
This is what it used to be like, for most of my life — it used to suck. Hard. The things you probably need to know about CFS are the things I hate to remember, can’t talk about. The years I spent completely debilitated, when I couldn’t walk to the mailbox, sometimes not even to the bathroom. When I just didn’t have the energy. When reading was too tiring, when my words got scrambled up when I spoke, when my right knee and the glands in my throat, under my arms, and in my groin, swelled with the slightest activity. The swelling still happens, actually, but at least now I can do more before I puff up. What I can’t talk about is how it felt to be ten years old, a kid who liked gymnastics, books, school, a kid whose life was filled with piano lessons and play dates, a kid who then got sick and had all that taken away. So that the only thing left was sick. And not only sick, but sick and disbelieved. Sick and undiagnosed. Sick and thought crazy. That also sucked. Hard.
So I grew up questioning my own sanity. I questioned whether or not what I knew in my body was real. What I knew was that I felt sick. Having CFS is not just feeling tired, not just an absence of energy, though there is that. It’s an absence of energy caused by a presence of something, a pulsing, poisoning, painful, draining presence in my body that causes sick while siphoning energy. It’s an absent presence. How ghostly. How Derrida-esque. But when all the doctors said they couldn’t find any reason why I felt this sick, when they asked whether my parents fought a lot (they didn’t) or if I got along with my brother (I did), I started to doubt what my body knew. For a long time, part of me wondered if I wasn’t just crazy. That was a tricky spot to be in as a kid, a good kid who always obeyed the grown-ups, to have the authority figures tell me that what I knew to be wrong in my body was not anything at all. And that’s another reason I don’t like to talk about it — I’m still afraid, to this day, that people will think I’m nuts. Or that I’m just tired.
When the powers-that-be don’t know what’s causing something, when the corners of their diagnostic imaginations are stretched too far, instead of saying, I don’t know, what they usually say is, It’s all in your head. So when the government doctors didn’t know what caused an outbreak of seemingly connected, seemingly viral illnesses in Lake Tahoe in 1984, the same year I got sick, they gave it a stupid name based on the one symptom everyone shared: fatigue. Chronic Fatigue Syndrome was born. The name ignores potential causal factors, any legitimizing nods to brain lesions and impaired immune systems, both of which are fairly consistent in CFS. Researchers think, now, that CFS is caused by a virus. I don’t know if they’re right or not. It’s sad, but I’ve stopped getting excited about possible research breakthroughs. All I can tell you is it feels like a virus in my body. But I wonder how different my experience would have been if the name had been that of a specific virus all along and not CFS.
Chronic Fatigue Syndrome: it’s a ridiculous, trivializing name. Reporters dubbed it “yuppie flu.” Kathie Lee Gifford riffed on national television that it was a cop-out, that everyone gets tired. The name makes me feel like a loser — how weak must I be for something as inane as fatigue to mess up my entire life. And since fatigue is often a symptom of depression, people lump them together and assume I’m depressed, which annoys the hell out of me. I still cringe inside when I have to tell people the name, and I alternate with the slightly more reasonable Chronic Fatigue Immune Dysfunction Syndrome, CFIDS, or pretend I’m British and say Myalgic Encephalomyelitis. Those sound a little better. But Chronic Fatigue Syndrome is the name that the US government coined and stuck with, and so it was a double-whammy of being disbelieved for three years, and then getting diagnosed with something as harmless-sounding as Chronic Fatigue Syndrome that shaped a pretty hefty core of my identity between the ages of ten and thirteen. So that’s all there, somewhere at the center of me, in that defining space that doesn’t too often see the light of day. This is part of why I don’t talk about it if I don’t have to. But it’s also part of what makes me who I am, and sometimes I need to share that; sometimes I need for people to see. I need for my new boyfriend to see. Because without knowing this, he can’t know me.
* * *
There was a time when all I wanted to do was talk about CFS, raise awareness, be a warrior. Diagnosis was a curse because of the name, and little was known about the disease or its treatments, but it was also a blessing because it allowed me to connect with other people who were experiencing the same thing, other kids. We wrote letters, mostly, the other kids and me, kids from all over the world. Homebound, isolated, and virtually friendless, those letters saved me. I’m still in touch with many of those now grown-up kids. Most of them are better; some are not. Some were later re-diagnosed — Lyme disease or endocrine disorders. Some are completely recovered. One, Allie, died, her immune system too impaired to fight a secondary infection. We’re different people now; we have degrees, jobs, mates, kids. But back then what we had was CFS. CFS was a point of connection, something to rally around, and, whether I liked it or not, it gave me a sense of identity. I was part of the CFS community. I was part of something.
I got involved with the CFIDS Association of America, wrote columns about CFS for teenagers, worked my way up to the Board of Directors, and lobbied congress for increased funding for the disease. Once, at a board meeting, as I sat in my wheelchair around a square of tables in a fancy hotel, the founder of the association said that when he got better, he’d never want to think about CFS again. I was aghast, stunned. Who would fight for the children if we didn’t? Who would rally the troops? Who would find the cure so we could start living? Uniting for the cause was what I had, all I had.
And then, in 1998, the government misappropriated funds earmarked for CFS research, funneling the money — money I’d worked hard to secure, money I used precious energy to try to get—into investigating other, more real, diseases. That hurt. That’s when I stopped being an advocate, or being only an advocate, when I began to look for the other parts of me. I started college, slowly, one course at a time, still too ill to walk across campus, still needing my wheelchair carried downstairs by members of the football team to get to composition class. Still the Sick Kid. I wouldn’t be able to pass for normal for another four years.
* * *
It’s still a bit of a new idea for me to have the choice to talk or not talk about my health with people. During those years when I was very sick, disclosing couldn’t be helped. I couldn’t interact normally — provisions had to be taken, wheelchairs arranged for, rest breaks built into schedules; all these things had to be explained. I had to tell people.
While I searched for a cure, while I waited for my life to start, the pattern of my health went like this: get sick. Get really sick. Get sicker. Stay sicker. Get ever-so-slightly better. Think this means I can do the things I used to do at the pace I used to do them before the first inkling of sick. Do things. Get incredibly sicker. Crash. Push. Crash. Push. Crash. Push.
Twenty-two years later, it finally sunk in that I wouldn’t be able to lead a full-time life. If I tried to go to school and work, I would relapse. If I pushed, bad consequences ensued. I accepted, reluctantly, that some things would take me longer to accomplish, and that I might need help along the way. I paced myself. I rested when I was tired. I listened to my body. And then a funny thing happened.
I started to get better.
It wasn’t all pacing. Figuring out blood pressure fluctuations, treating low gamma globulin levels that allowed infections to run amok, all of these treatments helped. And my CFS symptoms tend to come in systemic cycles, too, so I’d go from immunological issues to neurological ones, from stomach problems to blood pressure troubles. Recently the rotation shifted to the musculoskeletal, with pain in my joints and muscles, which is much easier to deal with than the other cycles. So I’m not saying that everyone with CFS can get better if they just rest and listen to their bodies. I’m not saying that at all. For a long time, I was so sick it didn’t make any difference how much I paced myself and listened to my body because my body was a mess. But it did help to realize that when I gained a tiny bit of energy, I shouldn’t spend it all at once, that I needed to ration.
It’s difficult—I’d missed out on a lot of my life, so when I started to feel the slightest bit better, I’d want to jump right back in and go to school full-time, do gymnastics, play in the band. Have a life. And, when I was told for so many years that nothing was wrong at all, it kind of made sense to think that when I gained a tiny bit of energy that they were right, I wasn’t sick, I could go back to how I used to live. Full throttle. Balls-to-the-wall. It sounds crazy to say it took me twenty-two years to learn the limits of my body, but it did.
My last relapse was bad. It happened after I tried to teach and take a full-time graduate course load at the same time, and I crashed to a level I thought I’d never fall to again, a sort of subterranean basement room of hell reserved for slow learners. I couldn’t wash my own hair. I had to move home. And there, lying in my old bed where I’d spent far too much time, I realized how stupid it was to keep pushing and crashing. How it was time to try something different.
I started back to graduate school taking one class. Slowly, I increased my course load. Slowly, I walked a little more then a little more then a little more without relapsing. I wasn’t all the way better; I’m still not all the way better. But for the past few years, I’ve been slowly cycling up. There’s an energy chart that some doctors use to diagnose and discuss CFS with their patients. It goes from one to ten, one being bedridden, up to the bathroom only, ten being a full work-week, social activities, exercising, and waking feeling refreshed. I’m at about a four-and-a-half right now, somewhere in between a four, which is out of bed, standing, walking four to six hours a day, and a five, performing with difficulty a sedentary job forty hours a week. I can work about ten, sometimes fifteen hours a week before my symptoms flare, before things start getting scary again.
This summer, trying to earn money for a trip to Las Vegas, I clocked in five hours a day of my little sedentary part-time job. After three days, I felt so pulsingly, painfully tired I didn’t think I could cross the street, could barely climb a flight of stairs. It was terrifying, feeling that old presence in my body, usually tamped down, rising to the surface like a sea monster. Reminding me that, if I’m not careful, it’ll pull me under. I’ll lose everything, and all that’ll be left is the Sick Kid. An identity of sick. I tried to deny it, to look the other way, pretend, keep moving. But my glands swelled, my throat hurt, my knee flared. After three five-hour days. I can’t work full-time. I just can’t do it. I don’t know if I’ll ever be able to do it, and it kills me. I live on disability and the money from those fifteen-ish hours. I’m on Medicare. My prescription insurance is through AARP. I’m ashamed of this, ashamed my body still won’t work right, that I have to accept help, ashamed I can’t support myself.
I know, too, that to see me walking around you’d think I was healthy. I’m vivacious. I have places I want to go and things I want to do. I’m not a depressed, tired-seeming person. In a way, that makes it even weirder to explain to people why I don’t work full-time, to explain that something is wrong with me. To make them understand that even though I seem fine, normal, I still can’t do everything I want to do without crashing, and I’m not willing to push and crash anymore. I wonder if they think I’m nuts, especially when they see me walking or swimming, active.
I’d understand if they did. I look fine. There’s no scarlet CFS branded on my forehead, no outward sign of illness. So how do I tell my new boyfriend and expect him to get it? And when? Not on the first date, but I can’t wait six months and then spring a lifelong illness on him, either. I like to start with vagueness, something along the lines of I have some health problems or I have a chronic illness. And he says, okay, what does that entail? I tell José I can’t live a full-time life. I tell him it took me eight years to graduate from college. I tell him the name, CFS, and I cringe. But I can’t tell him the whole story all at once. It’s too much. So I push through and I hide and I pass for healthy.
Because I’m better, I’m really a lot better. The questioning is still there, the balance game of how much can I do before bad things happen, but now the game’s more fun. Now the questions are more like, can I walk two miles instead of one (usually), or can I sleep eight hours instead of ten (no), or would a spinning class cause a flare-up (don’t know — too chicken to find out). Every day is different. Some days, two miles is just fine and other days, hey, flashback, I can’t make it to the mailbox. Some days I sashay and saunter along the spine of that balance beam and other days I have to grip my toes while wobbling back and forth, fighting for control. Trying not to fall. Because every day I feel the virus inside me. I feel the slow throb and ache in my joints, my limbs, the glands in my throat and under my arms. Every day every day every day. But I can wash my own hair. I can make dinner and have energy left to eat it. I can live alone.
I can pass for healthy.
Nobody has to know.
* * *
I still get a little thrill of satisfaction when I realize that the new people in my life don’t have to automatically know about my CFS, that I can talk about being a farmer’s market enthusiast or a beachcomber or a doggie-mommy first and maybe never tell them at all. This works for casual friendships, and for my hairdresser, and for the Blockbuster guy, but when a new friendship, a new relationship, starts to deepen, I begin to feel like I’m lying if I don’t talk about my CFS. It may be as simple as getting to know someone means getting to know their stories, and most of my stories involve growing up as the Sick Kid.
I’ve never asked my mom to stop talking about my CFS with everyone and their grandmother. It’s part of her identity, too. Taking care of someone for years leaves a mark. For her as well, it’s difficult to develop an alternative individuality, one that doesn’t revolve around doctors and diagnoses and disease. It’s a struggle to find those other stories to share, the ones that don’t involve some aspect of life with a chronic illness. I can see why my mother continues to see me that way, as the Sick Kid who Overcame, and in a way, she’s right — that is who I am. The other parts of me, the ones not associated with CFS, still feel fresh, new. Like I spent a decade in cold storage, and then bumpily accumulated enough experiences to finally grow up and become me. José’s exactly nine and a half years younger than I am, but we match.
An ex-boyfriend once told me it depressed him when he asked me how I was and I told him I was tired. That it made him feel tired. How do I answer, then, the how are you? How do I answer honestly without being a drag, a downer? Because the truth is, I’m tired. I’m always pushing through levels of tired. I’ve adapted to tired, and I’ve started to figure out how to live with tired, but I’m tired. Maybe again it’s a matter of balance, of walking that line of disclosure. To answer I’m tired, but I’m writing an essay. I’m tired, but I’m taking the dog for a walk. Part of the balance, too, is realizing that I’m not obligated to explain my health to everyone on the street. I don’t have to let everyone in.
This summer, on my trip to Las Vegas, I saw a man in front of The Flamingo holding a Yorkie. I stopped to pat the dog and had a fairly lengthy conversation with the man. The dog was wearing a neon pink and yellow dress and a matching hair ribbon, so there was plenty to talk about. Here’s what that man knows about me now — I’m a Yorkie-mommy. My dog does not own any neon outfits, but she does hyperventilate with excitement over dresses studded with rhinestones. He knows I live in West Virginia. That his neon-bedecked Yorkie was the highlight of my Vegas vacation thus far. And that’s it. That’s all.
But then there are the people who I want to let in, who I need to let in. My new but dear friends. My boyfriend. I want to tell them. I want him to understand. I want to say, here, to love me you have to know me, and to know me, you have to know this. This not-fun stuff, this stuff that I still deal with every day, this stuff that I’m terrified you either won’t believe or will think is too much to handle. So I try to find a new way to talk about it, a new language for what I need him to see about how my body works. About how that does and does not make me who I am. When I’m having a bad day, when my body throbs with sick, I tell José that I’m feeling node-y, that I’m having a bad CFS day. My glands are swollen like an egg today, I tell him. Scrambled or fried, he asks. I tell my friends I’m too wicked exhausted to move, that I feel craptastic. And I tell them parts of the whole story, bits at a time, if they want to know, if they ask. But it’s much easier, much more fun, to pretend the struggle is over, when really it’s still there. Every day.
There are certain truths my body knows. How my throat hurts, how I’ve had a headache since 1984. How I never, ever wake up feeling like I’ve slept well, like I’ve slept at all. How my knee throbs a poisonous ache whenever I overdo. These are the truths I want the people close to me to know. But there are other truths, too. Other stories. Other things that have shaped me — books I’ve read, people I’ve loved, places I’ve been. It’s all me.
If you meet my mother, I’m sure you’ll hear about my gamma globulin levels and my MRI results and the psychologist who told my parents to treat me with Tender Loving Neglect. You’ll hear about that part of me, the part I don’t like to talk about, the part that lurks under the surface, the part that, try as I might, I can’t deny. But if you meet me, I’m going to tell you about my other truths — my love of the Outer Banks, the crush I have on William Faulkner, the amazing dinner my boyfriend cooked for me last night, and the exceeding adorableness of my dog, Bridget.
She really is the cutest thing you’ve ever seen.