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 pneumoniaâ€”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 doctorâ€”and then FOXâ€”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:
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= )
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 inâ€” 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 see â€“ but 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 wayâ€”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 situationâ€”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 basementâ€”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.