Narrative Flow

June 18, 2007 at 3:13 pm (Uncategorized)

I receive the most amazing e-mails from folks who read my blog. Many of them offer me support; a few pass on some much-needed perspective on child-rearing. While they all share a street address in the city of chronic town, the folks who write to me are otherwise a diverse group. I hear from young men and older women; some live on the west coast, others on the east, and one in Australia; a few people have just gotten a sarcoidosis diagnosis, while others have struggled with this disease for decades; I’ll occasionally hear from a person with cancer, or M.S., or some other long-term disease; and a few times, I get notes from the family members of someone with sarcoidosis.

Whatever their differences, these people all share one common trait: they want to tell their stories and know that someone is listening, that someone will understand – or at least try to understand. And I’m no different. That’s why I labor on this blog when I could be writing snappy pieces about irrelevant topics for small amounts of money. But writing about sarcoidosis and the changes it has brought to me is sometimes the only way I know how to make sense of it all.
I believe that we all construct the narratives of our lives. What do I mean by this? Well, I should start off with the giant caveat that I was schooled in the philosophy of post-modernism. Although I got my degree in history from U.C. Berkeley, I didn’t actually learn much history of the kind we all were taught in high school – you know, important dates, important events, important trends in world history. Instead, what I took away from Berkeley is the understanding that the events we consider important are important precisely because we have chosen them to be so. In other words, there’s not this inherent “greatness scale” that accompanies one person’s life and not another’s or one event and not another. So, while we like to blare the trumpets whenever we mention, say, the Magna Carta, as some big, important step in the road to democracy, and some big, important event in and of itself, it’s essential to remember that the connection from the Magna Carta in 1215 (which was actually a document that shored up aristocratic privileges) to the U.S. Constitution is only a connection because we have decided to make it one. Plenty of people with Ph.D.s would argue that the Great Peasants’ Revolt (also knows as Tyler’s Rebellion) of 1381 advanced the causes of democracy in the long term much more than a bunch of lords protecting their lordly prerogatives in the Magna Carta.

“Very nice,” I can hear you thinking. “I’m looking for information about sarcoidosis and this weirdo is giving me a history lesson based on the principles of Michel Foucault. Now what does this have to do with e-mails and illness?” Well, if you imagine that just like historians choose to connect various threads to make a coherent historical narrative, so do we, as humans, connect what could be construed as random events to make a cohesive narrative of our lives. Whether or not we do it consciously (and it’s usually unconsciously), we tell the stories of ourselves by connecting certain dots and leaving others out. One person will tell you she became a painter because of a special art teacher in fourth grade; she links these two events, leaving out the equally special high school English teacher that made her think about becoming a novelist for a few months. Another will tell you that his marriage ended because he is the child of divorce. From the countless – indeed seemingly infinite and often chaotic – moments that comprise our time on this earth, we each construct and then tell the stories of our lives.

But what happens when a significant, intervening event – like being diagnosed with a serious and chronic illness – occurs? As all of us in chronic town know, getting news like this pretty much flushes down the toilet whatever conceptions of ourselves we harbored. Everything changes, and it changes quickly. Once the doctors tell you not to count on seeing your son graduate from high school, you realize you have very little control over what I fondly refer to as BAE –Big Ass Events – or, the matters of life and death.

As an added challenge, when you get diagnosed with a disease like sarcoidosis, you don’t even get to benefit from the pre-conceived stories of illness that come with diseases like cancer (which I’m sure are shockingly annoying to have to hear, if you have cancer). But, everyone knows about cancer; we all understand what those yellow, LiveStrong bracelets mean. People with cancer aren’t “sick” in the common parlance, they’re survivors. The general population comprehends cancer treatments and the sometimes horrible impact they can have on the human body. But tell someone you have sarcoidosis, and they’ll first squint at you like they can’t quite get your face in focus, and they’ll say, “You have what?” After you repeat, “sar-coi-dosis,” nice and slowly, they’ll squint again and say, “Well, what’s that?” Like you are personally inconveniencing them. And then you get to explain for the seven millionth time what sarcoidosis is, and all the while, you can just see them wondering if it’s a “serious disease.” Sometimes they’ll mention, “Well, you don’t look sick.” I actually had someone ask me in the grocery store if it was a “real illness, the kind that can kill you.” If only, if only, I was quick on my feet and had thought to tell them that, “No, I suffer from a fake disease.” It’s all a bit jarring – first, having your life made incomprehensible to you by disease, and then having society at large grapple with your confusion.

I do know that I am one of the lucky ones. I got diagnosed with sarcoidosis promptly, and my local doctors had the good sense to send me to specialists who had expertise in my (primarily cardiac) manifestation of the disease. Unlike other stories I have heard, I didn’t have to beg my doctor to explain why I couldn’t breathe and why all I wanted to do was sleep for sixteen hours a day and get told there was some underlying psychological cause. However, I do get dozens of notes on this theme. One woman with pulmonary sarcoidosis was having heart episodes that made her pass out, but her doctor continued to tell her that she had a mild form of the disease and then refused to order the requisite testing to make sure she didn’t have cardiac sarcoidosis. Others have to fight to get medication; or fight not to be directly pumped full of prednisone four minutes after being diagnosed.

I’ve also been fortunate to have friends and family who don’t make it their life mission to minimize my illness. I’ve heard from more than one woman about spouses yelling at them for not being able to work; another person who did manage to drag herself to the office on a regular basis got fired. And now that everyone is so internet savvy, there are plenty of people who type “sarcoidosis” into a search engine, and read the first (and only the first) paragraph of the disease description, which invariably states that most forms of the disease are mild and spontaneously remit. Just what you need, another idiot who thinks he’s an expert on your disease. Luckily, no one in my life tries to tell me my illness is no big deal. But other folks aren’t so fortunate. They have to justify being sick to the people who are supposed to love them and care for them.

I would stop being sick in a heartbeat. I think we all would. I want my heart back; I want my joints to stop throbbing in time with my pulse; I want to stop getting experimental drugs that might cause cancer in a few years; I want to stop spending every spare moment in a doctor’s office; I want my parents and my husband and my son to no longer have to worry about me; I don’t want Jay to lay awake at night checking to make sure I’m still breathing. Illness is not virtuous, nor does it make us so. But I don’t have much choice in what illness was assigned to me. All I can do now is try to make sense of it, to try to learn from it, to try to rewrite my life’s narrative in a way that makes room for my illness. I am not now the same person I was before I first heard the term sarcoidosis. Fear of death, the ongoing traumas of this disease, have changed me irrevocably. But now it’s my job to lay claim to those changes. Writing is my way to connect. Writing is cathartic and calming. It helps me explain to myself who I am now. And reading the kind and wise words of you all has helped me too. I feel like together, in this online community, we can sift out the chaos, we can be heard, and we can re-find and redefine the thread that defines us.

Feel free to post comments, or write to me at chronic.town@hotmail.com.

1 Comment

  1. Mike Norwine said,

    Great article! My wife was diagnosed with sarcoidosis about 2 1/2 years ago. The doctor says there is a 90% chance that it will go into remission. But I don’t feel comfortable with the 10%. It seemed he was still learning about the disease so how can he tell us 90% while he is still learning on the job. You are so right when you tell people about the disease…they just give you a wierd look and assume it is not serious since they have never heard of it. I guess my wife is lucky that it has not affected any organs except her lymph nodes around her heart. She has had granulomas removed from her forehead but that is it so far. But she gets so frustrated that she is so tired all the time. She doesn’t want to give in to the disease but I tell her she needs to respect the disease and get all the rest she can. Do not overdue it!!! I guess she is still trying to figure out her limitations but it has been over 2 years. Well, I will tell my wife Janice about chronic town. Thanks for listening!

    Mike Norwine
    Buellton, Ca.

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