Community

April 2, 2007 at 1:27 pm (Uncategorized)

I found out a few days ago that the father of a friend was diagnosed with sarcoidosis. I spoke with both my friend and her mother at some length about this strange new disease that had entered their lives like an uninvited guest. It gave me an odd sense of deja vu to hear their tongues trip over the disease name. Sarcoidoisis, sacadosis, sarcoidosis, what does it matter? Pronunciation means nothing when your everyday life veers off the paved road you’ve been following, and heads towards the hills on an unmarked path of scrub grass and tumbleweed.

The conversations I had with my friend and her family were eerily familiar in other ways, too. Her father had gotten from his doctors what sounded almost verbatim the spiel I heard post-biopsy. “You don’t have cancer. It’s actually good news that you have this weird-sounding disease that you’ve never heard of before. Sarcoidoisis is rarely fatal; it’s manageable. Most cases remit spontaneously. For most people, this will just go away.”

So I told my friend and her family everything I know. I agreed that for most people, this disease isn’t a death sentence. I told them to use me as a resource for information, but not to consider me as a typical example of the disease. Most people, I assured them, only have the granulomatous cells that characterize sarcoidosis in their lungs. It’s unusual for the disease to do as it has with me and play hop-scotch in the body: heart, brain, liver, spleen, lungs, joints. “But be sure,” I said, as clearly and firmly as I could, “that the local doctors do an eye exam and an EKG.” And then I added, “Just to be sure.”

Being able to talk with these folks – and pass along practical and reassuring information – was strangely comforting. I remember the early days of my diagnosis, before I discovered there were support groups on the Internet and doctors that specialized in the disease, when I would spend hours trawling the Web, trying to separate the fiction from the fact and the tales of doom and death from the realities of a disease with an odd name. It wasn’t easy, especially after I was diagnosed with cardiac sarcoidosis, and most of what I found on the Internet seemed to involve mortality statistics.

Having an illness, especially a chronic one, is one of the loneliest journeys you’ll encounter. Even the best-intentioned of our friends want us to be happy and healthy and will sometimes let slip the occasional, “You’re still sick?” The physical pain of our conditions isolates us, and we hate to constantly remind people of our how lousy we feel because it upsets people and makes them worry about us. So we end up hiding the fact that our bodies hurt and that we can’t catch our breath when we walk, or that we’ve lost the feeling in our legs, or that our hearts and souls hurt even more than our bodies. After all, becoming sick doesn’t mean we suddenly lose our pride or our natural desire to take care of ourselves and the people we love. So we don’t ask for help as often as we should. And that makes us feel all the lonelier.

Writing this blog is my way of combating the loneliness and the fear. Nothing makes me happier than receiving a note or a comment from someone telling me that I expressed something they were thinking or feeling. I believe that these small connections are like sparks in the great blackness that is disease.

But community doesn’t necessarily begin or end only with fellow travelers on the chronic illness path. The people that love us learn about our disease and help us. Just last week my parents came and helped me care for my three-year old son while my husband was out of town for work.

And last night, our “hometown family” of Martha and Geoff made life a little more bearable during a difficult day. I had to go to the emergency room because I was having fairly intense chest pains, felt short of breath, and was passing out. Martha and Geoff took Andrew for several hours without even hesitating for an instant to ascertain whether it was convenient for them. Then the hospital ran a bevy of tests, all of which showed that my heart was just fine – or just fine for me. They said that sarcoidosis can cause mysterious chest pains, that the fact that I had stopped taking my pain medication cold turkey (after melodramatically flushing it down the toilet while proclaiming, “This is no way to live,” and then proceeded to also flush my high blood pressure medication I’m supposed to take indefinitely even though I don’t have high blood pressure and it makes me feel like shit) probably contributed to the situation, and the fact that I’ve had a week-long stomach flu probably caused the fainting. I spent most of time in the hospital feeling an intense pressure in my chest that made it hard to breathe. I was fairly convinced I was going to die – if not on this trip to the ER, then the next. It was unbelievably lonely and terrifying. What kept me grounded was knowing that Andrew was safe at Martha and Geoff’s and that Jay was next to me holding my hand and wiping my tears as they fell one by one. The doctors got me hydrated, made me promise to taper off my pain meds with the pills they sent my way – not to send them swimming with the fishes – and told me that even though I felt like a lunatic, I was actually doing a pretty good job of staying sane in the face of a serious and debilitating disease.

You are probably wondering why I’m divulging such a deeply personal and terrifying experience. Despite the fact that I blog, I’m actually a private person, not prone to opening myself up to the world’s voyeurs. I guess it’s one more attempt to strike a spark in the darkness that threatens us. I don’t believe I’m the only one who has judged life unlivable when having to take a handful (or two) of pills everyday (and half of those pills make me feel like I’m living on an outer moon of Pluto not here in Montana with my family); I don’t think I’m the only one with cardiac sarcoidosis who feels a thrumming in my chest that I assume is a heart attack; I don’t think I’m the only one who knows this disease will kill me and worries that this will happen sooner rather than later. But just like I think I made my friend and her family feel a bit better by knowing there are others walking and talking and breathing with sarcoidosis, my writing is an attempt to prove to myself that we (all of us) can live in chronic town – even on the days we think we are dying or losing our minds.

So let’s pretend we’re at an eighties rock show. Hold up that cigarette lighter. That flame, no matter how small, makes a difference.

4 Comments

  1. Paul said,

    “lighter held high”

    rebecca

    Hang in there

    Paul

  2. rebecca said,

    Thanks Paul

  3. Elizabeth said,

    I to have thought of flushing my many handfulls of pills down the toliet. I have then thought f… it and just stop completly. I hate to have to “depend” on anything. I’m a bear to my family and feel horrible because I can’t do anything. I’ve come very close to taking my own life and just don’t want my kids to find me. Then I made a plan for elsewhere, wrote the note but a phone called stop me. I’ve realize that there are many days that are bad but I need to be here for my family as long as I can!

    It’s okay to cry! Many people do.

  4. Deborah Wiseman said,

    Thanks for your comments. I met a new friend this week who revealed that she has sarcoidosis and I wanted to look it up so I could better understand. Thanks for your thoughtful, funny and insightful dialogue. Keep that flame burning…=)

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