Bernie Mac

August 13, 2008 at 1:45 pm (Uncategorized)

Bernie Mac died. At first his publicist denied that his sarcoidosis had anything to do with his death from pneumonia. But later, his sister came forward to say that his immune system was weakened by medications that kept his sarcoidosis in remission, but that made him vulnerable to two different strains of pneumonia. I assume it was the dreaded Pneumocystis pneumonia (PCP) that killed him.

Bernie Mac was never a spokesman for sarcoidosis. Unlike Michael J. Fox with Parkinson’s disease or Lance Armstrong with cancer, Bernie Mac, as far as I know anyway, never launched an awareness-raising campaign for sarcoidosis. Even when his face became almost as puffy as mine (I assume from prednisone) on his acclaimed television comedy, “The Bernie Mac Show,” he didn’t make much of a fuss about being sick.

After Bernie Mac died, the sarcoidosis-related chat rooms that I visit were abuzz with fury at the short shrift sarcoidosis was given in initial reports of his death. Although I didn’t see the footage (having a visceral loathing of anything related to FOX news), posts on sites such as Sarcoid Buddies said that Sam Shepherd of FOX trotted out a doctor who said the celebrity died of pneumonia—end of story. What particularly outraged the chat room folks was how this doctor seriously downplayed his underlying disease. She said something to the effect that most people who have sarcoidosis don’t even know they have it because it rarely causes any complications or symptoms and usually just remits. I assume the doctor—and then FOX—were simply parroting the press release Bernie Mac’s family supplied. It took a couple of days for his sister to come forward and talk about the disease, as well as for other doctors to note that 50-year old men typically don’t just up and die from pneumonia. Then it took a couple of days more for sarcoidosis itself to make its way into the headlines. The Chicago Tribune ran a piece using Bernie Mac as a lens onto the wider issue of the millions of lives wrecked by sarcoidosis. (You can find the full article at:
http://www.chicagotribune.com/features/lifestyle/health/chi-sarcoidosisaug12,0,5966562.story.)

I can understand the rage circulating in the sarcoidosis chat rooms. Many doctors downplay the disease. I remember when I was first diagnosed, the surgeon came to the recovery room to tell me the “good news” of my lung biopsy. We had feared I had lymphoma, but instead all I had was a “minor condition,” one with a funny name that tied up my tongue every time I tried to pronounce it. Four year after that good news, I won’t go so far as to wish I had lymphoma instead of sarcoidosis, but I do often ruefully ponder the fact that there is a known protocol for treating lymphoma, that doctors are finally beginning to understand the disease process underlying lymphoma, and that you can be “cured” of lymphoma. While many cases of sarcoidosis do indeed spontaneously remit, there are others that don’t. We who develop chronic, multi-organ sarcoidosis occupy what feels like the dimly-lit back halls of medical knowledge. Our treatment feels nebulous. Case studies of various therapies, ranging from antibiotics to chemotherapy to thalidomide, sometimes cite patient samples that number in single digits. I half-expect some sarcoidosis “expert” to bring out the leeches or the blood-letters, or maybe start talking about dangerous vapours or black bile causing my problems.

One woman on Sarcoid Buddies vented about what it feels like to have a severe form of a disease that White Coats too often minimize:

If Bernie Mac had been in remission, .don’t they know that he could have come out of remission?… Don’t they understand that our immune systems are messed up…? I don’t understand why they want to just sort of sweep the fact that he had sarcoidosis under the rug, so to speak. Is it because they don’t know enough about it and don’t want to look stupid trying to answer questions by the press?… To me it seems like a slap in the face to all of us who are suffering with the disabling problems and pain that can stem from this disease every day of our lives. Those of us who are unable to work. Whose dreams have been shattered. Whose lives have been changed. It makes us look like we are a bunch of hypochondriacs complaining about a disease that a doctor on Fox news said that usually has no symptoms at all and just goes away. We know that isn’t true in ALL cases. But, what can we do about it? How many of us have to die before they realize that it IS from complications of sarcoidosis? I’m just furious about the way this disease is downplayed when I know so many that have lost their lives to it. … This disease robs us of so much and now people are trying to rob us of our dignity when they downplay this disease like this.” (You can read the full discussion and this woman’s entire posting at http://groups.msn.com/SarcoidBuddies/general.msnw?action=get_message&mview=0&ID_Message=31470&LastModified=4675685466442838062)

As much as I understand the anger of what it feels like to have a non-trendy disease, I can also understand Bernie Mac’s reticence (which followed him posthumously in the press release circulated by his publicist). Even though I feel compelled to write about my experiences with this disease and the myriad ways it has distorted my life, I still long to return to a “normal life.” I’ve been so occupied with this sickness that I’m not even sure what this normality would look like, but I’m pretty sure it would involve not having a constant piercing headache, vertigo that makes walking around feel like I’m on a heaving ship, joint pain so severe there are days I can’t type or hold a pen, medical protocols that leave me sick and dry-heaving, worries that I too will die of pneumonia, so little energy that building Legos with my son exhausts me, and so forth. I crave the little things I have lost: my balance, my ability to drive, the feeling in my left leg, and, most of all, actually reading a book. (My father-in-law, Steve, has generously given me free reign of his audible.com account, so I can download books to listen to, but still I miss the sacred feeling of a book in my hand, the rustle of turning pages, the printed words taking shape before my eyes.)

In fact, my quest for a run-of-the-mill life gets me into trouble. The other night I wanted to take out the trash. It’s not that I was pining for a trip to the big garbage bin, per say, but, on a subconscious level, I think I did want to simply scoop up the stinky bag of garbage, traipse down the porch stairs, and toss the bag in—without having to analyze it. Unfortunately, somewhere between traipsing and tossing, my vertigo set in, the whole world started to spin, and I feel down the porch steps, landed on concrete below, re-injuring my knee (still painful from my last fall) and my “good” ankle (i.e. not the one with the ruptured ligaments.) As I lay on the pavement, with a weed poking into an open wound on my chest (another story, that, about having a port installed for chemo), I was enraged. “Fuuuuuuck!” I screamed, to the weed, to my vertigo, to my ankle, to my disease. That one vital scream summed up my frustration of having to wash my hands seventeen times a day to avoid the near occasion of germs, to inquisiting my friends about their health if they want to get together in case they might pass a bug to me that leaves me like Bernie Mac, to having a calendar filled with nothing but doctor’s appointments, infusion appointments, physical therapy appointments, and surgery appointments. I’d like to hold up a perfectly normal life for the world to seebut I’m too busy falling over, spontaneously rupturing ligaments, watching liquids drip into my body, and swallowing handfuls of pills in the faint hope that one of them might someday make this damn headache go away. No wonder I just wanted to take the trash out.

It’s bad enough to live this way, but worse still to have a friend, your doctor, or even some airhead “medical expert” on FOX news, tell you that the disease you have isn’t that bad, that all around you people are getting well. One way to deal with this is to put on a brave face, no matter how puffy the prednisone has made it, and be as normal as you can. Bernie Mac did this, and he was indeed brave. I try to do this too. Sometimes I succeed. Other times, I end up yelling obscenities at a weed. I guess I’m still trying to find that middle way—living with an awareness that I can do some normal things, but an acceptance that other basic tasks might end up with me and the weed having additional unpleasant conversations.

Jay and I used to watch the “The Bernie Mac Show” before Andrew came along and seriously reduced the number of hours we had available for television. I liked the program, which was a comical take on a semi-fictionalized version of Mac’s own life: Mac and his lovely wife take in his drug-addicted sister’s three children and raise them as their own kids in their affluent Los Angeles neighborhood. Usually he tried to control a situation—whether it was his rebellious teenage niece/daughter sneaking off to a concert or his wife trying to participate in his “boy’s night” poker game in the basement—but in the end, he often got his comeuppance and saw that he was being a bit too controlling, a bit too impatient, a bit too attached to his creature comforts. He wanted his life as it was before three needy, mouthy kids descended into his world, but he loved them just same. He learned anew, every time, how difficult but necessary change is. I relate to that. I think he kept the sarcoidosis-related changes to his life private, but the theme of his program resonates with my experiences with the disease.

I hope that Bernie Mac’s death raises the general awareness of sarcoidosis and other auto-immune diseases. Indeed my fellow blogger, Alicia, on her excellent site, I’d Like To Buy A Bowel (http://idliketobuyabowel.blogspot.com/) makes me feel lucky that I have sarcoidosis and not the even lesser known Crohn’s disease. Illnesses shouldn’t have to compete with one another for eliciting compassion or research dollars, but, in reality, they do. What sarcoidosis needs is an eloquent spokesperson, with a media-savvy fund-raising machine behind her. I’m too damn tired to start such an organization, but I hope someone will. Sadly, I think it is likely that Bernie Mac’s death will result in a flurry of articles in People and suchlike magazines, before some other celebrity-related tragedy tops the news cycle and the world quickly forgets sarcoidosis again.

I’m sad that Bernie Mac died. He struck me as a funny, good guy. I wish he had publicized his struggle with sarcoidosis more during his life, but I understand why he didn’t. He just wanted to live a normal life. We all do. Rest in peace, Bernie Mac and you nameless thousands who have died from sarcoidosis.

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Stretch

August 4, 2008 at 2:28 pm (Uncategorized)

But one man loved the pilgrim soul in you,
And loved the sorrows of your changing face.

(from “When You Are Old” by W. B. Yeats)

I wasn’t thinking poetically when I caught sight of my belly and thighs in the mirror. I’ve written before about the tremendous amount of weight I’ve gained on my four-year course of prednisone, but I try not to think about the “new” me. And I certainly try to avoid looking at her. Me. The woman with a face bloated by corticosteriods and extra flesh, with a prednisone-induced buffalo hump on my back and a goiter that obscures my neck. I’ll apprize myself when I need to, say when I’m putting on make-up for a special occasion. But in these instances I keep focused on the component parts—my brows awaiting smoothing; the right color to accentuate my lips; the creamy smoothness of the concealer beneath my tired eyes—not on the whole of me.

Unfortunately, I’ve gotten stuck in front of the mirror lately. With my ankle injury, I can’t dart from the shower to the closet with nary a backward glance at my reflection, as I usually do. To make matters worse (and me even slower), I took a bad fall last week and came very close to breaking my knee cap. To say that I hobble would exaggerate my speed. I now creep, maybe inch. And in the process of doing so, I caught a look—which led to a full, horrified examination—of my flesh. The extra weight was the least of it. You can’t gain eighty-odd pounds and not notice new bulges and curves. No, what kept me entranced before my reflected shape were the stretch marks. They are etched into my pale skin like the representations of mountain ridges on topographic maps. There, down both sides of my torso, my thighs, my breasts, were enough raw, deep purple ridgelines to fill a map with the Andes, the Rockies, the Himalayas, the Sierras, and the Smokies.

I traced this new topography of myself. Where had these come from? Why did they hurt? I asked my new doctor, the Cincinnati Wizard, and even bashfully pulled up my shirt to show him the deepest, most painful ones on the right side of my stomach. “It’s the prednisone,” he said. “It thins this skin.” Was there anything I could do? Well, get off the prednisone. And try rubbing lanolin cream into them.

Jay wasn’t surprised by my stretch marks. While I had been running away from mirrors, he had seen me coming from the shower, changing clothes, and in bed. “How can you stand these?” I asked him, stifling a sob, while I silently resolved never to appear in anything other than a turtleneck and long pants in front of him unless it was utterly dark. Not dim, but black. Or, I could convert to fundamentalist Islam and wear the hijab. That would be even better than a turtleneck, which would only partially obscure my goiter. With the hijab, I could cover both the stretch marks and my moon face. His voice interrupted my inner pondering of whether I’d necessarily have to embrace the religion to get its clothes. “I love you,” he said. “You.” And the lump in my throat dissolved into a rainstorm of tears that washed down the new mountain ridges of my flesh.

I keep waiting for Jay to come to his senses and loathe me. After all, I’ve heard plenty of true tales about men abandoning their sick wives (one, two weeks after their honeymoon when she was diagnosed with lupus.) It’s not just that I’ve gotten fat, have stretch marks and disintegrating ligaments, a constant headache, and vertigo that literally topples me every other day or so. Nor is it that I’m unable to work, that my proud husband is forced to accept financial help from both our families while he works full-time and picks up contract work that keeps him up after midnight. It’s not simply that he does the yeoman’s work on caring for our four-year old son, who cannot be in daycare or preschool because my immune system is compromised and he’d bring home too many germs. It is Jay who rises early on the weekends to take Andrew on play dates, to the farmer’s market, to the library. It’s not that he perpetually turns down job offers for more lucrative, more interesting work in the private sector. He received one such proposition just last week from his dream firm. But moving would mean taking me away from the web of family and friends who prop me up when I am especially ill; also, no small law firm could cover my insurance costs. It’s not that we can’t travel abroad—return to Palau, backpack through China, or kayak down the Mekong River in Laos. Hell, I’m not even sure I can accompany him to Portland in a couple of weeks, for a mini-vacation close to home. It’s not that a hot date for us now is an hour spent quietly together while I get my chemotherapy.

Rather, it is all of these things distinct and taken together. Sarcoidosis has brought me a life I didn’t plan for, dream of, or want. It’s living, but I don’t always feel deeply alive. We’re not hiking through the towering peaks of Glacier National Park, or wending our way down the Pacific Crest Trail as we had hoped to do. We’re not raising a brood of kids and shepherding them through new places with us. Sarcoidosis has brought Jay this more limited life as well. A life where we must choose between chemotherapy (which might make me well) and future children (the toxic brew will likely leave me sterile). When I tell him all of this, when I try to apologize for what a mess I’ve made of our hopes and our dreams, he turns his eyes on me and shushes me. At these times, his eyes are like polished stones left out in the sun all day to gather warmth. “This—is—not—the—life—you wanted,” I sob and shudder into his shoulder. “No, but it’s the life I have with you,” he says, again and again. “And that is all the life I want.”

Jay is not a saint. Nor am I. We quarrel like every other couple over the ridiculous minutiae of our days—the thermostat in the winter, whether or not to run the air conditioner in the car in the summer. Both he and I can be total jerks. Like everyone else we try to find ways to be together, as a couple and as a family, in ways that are meaningful. The obstacles are perhaps a bit greater for us, since there are frequently days when my head hurts so badly I cannot even turn over in bed, much less get out of it. I try to apologize for this, but again, he won’t let me.

Whenever I speak aloud in my inner critical voice, Jay becomes angry. His warm eyes become harder and darker. “Don’t talk about yourself that way,” he says, when I begin my litany of my fatness, worthlessness, and non-contribution. “You’re pissing me off,” he warns. “No one talks about you that way—including you.” I whine that it’s true, that I am fat, worthless, and not contributing. “I love you,” he says.

Is it possible that love, like skin, can stretch a self so markedly? While he acknowledges my bigger body and supports my desire to lose weight so that I’ll be healthier, he says that he finds me lovely as I am. While he pushes me to write, he understands the horror of my headaches and the days I cannot even imagine words, much less produce them. While he relishes a break on the evenings when I am able to cook dinner or put Andrew to bed, he uncomplainingly will floss our grumpy boy’s teeth and read him to sleep on the nights I am too ill. While he ardently hopes for a cure (even if it means we’ll have no more babies of our own), he says he can go on as we are—with me, my sarcoidosis, and his love for me and Andrew. Is it possible? I know if our roles were reversed I would not flee the sweet smell of his skin, the sharp wit of his mind—even if he became fat and unable to work, even if he kept my travels closer to home. Why can’t I take his love with the same faith I offer mine?

Perhaps there is a lesson in my stretch marks. They are a visible sign of accommodation, of making room for what was not planned for, or expected. They prove that life marks us; yet in the marking, we do not explode or combust. We stretch. We love.

I’ll close with the words of one more eloquent that me. In “Last Night’s Moon” Anne Michaels writes:

If love wants you; if you’ve been melted
down to stars, you will love
with lungs and gills, with warm blood
and cold. With feathers and scales.

And with stretch marks, too?

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