a letter to my new doctors
by maureen k mccarthy

I was a member of a women’s group many years ago where our first couple of meetings included telling “the story” of our life in order to better understand where each woman was coming from. When I finished telling my story a woman across from me said, “You know, after hearing that story, I would’ve thought you’d be the biggest b____ I’d ever met. But how remarkable that you’re quite the opposite.”

I was floored by her comment, not because she’d expected me to be a bitter soul, but because I hadn’t perceived my life to be so terribly misfortunate. When WNC Woman Editor, Julie Parker, invited me to write an article for this month’s issue on Overcoming Adversity, the women’s group experience came to mind. Julie doesn’t happen to see my life as adverse either. She said to me, “This is not about 'poor Maureen, isn’t she so brave.' It’s about understanding that there is so much more joy to be had no matter what is going on.” Well that got me thinking about how telling “the stories” of our lives help us provide others a window into how we see the world. And how can I better understand my own stories and filters that shape and create the life I live?

Last year I went to see a physician for the first time in 5 years. I have a rare, fatal disease that has filled my lungs with tumors and left about 15-20% oxygen capacity. I haven’t been able to get insurance for years and have massive medical bills, so for me doctor/hospital visits were out of the question. In July 2004 I was put on Medicaid and was able to find a local internist and pulmonologist. It’s a large practice and I wasn’t sure who I would be seeing or how much time I would be given. In preparation for my first appointment I wrote a letter to the doctor.

At that first appointment I was fortunate to meet Dr. John Rogers who, after speaking with me and reading my letter, downheartedly told me he was leaving the practice in two weeks for a new job at an urgent care center. He said that after meeting me, he almost wanted to reconsider. “You’re the kind of patient that made me want to go into medicine in the first place.” We had a wonderful, heartfelt conversation about our life’s work and our great desire to be a force of good in the world. He then told me he would like to refer me to another doctor in the practice, Dr. Kim Morris, because he felt she would be a perfect fit for me. Boy was he right. Dr. Morris then read the letter, came in to meet me, and a year later she’s one of my favorite people. Dr. Rogers also referred me to an excellent pulmonologist, Dr. Gail Clary, who again is the perfect person for me. She understands the way I live and think and is a great partner in making decisions. I adore her. Thank you John Rogers!

I wrote that letter because my experience over the years of having this disease, is that there are a lot of cultural, maybe even human expectations around having an illness and being told you’ll die soon. We expect it to be hard, we expect to be sad, we expect people to fight death at all cost. And even though the medical community would disagree with me clinically, I know that I am the healthiest person you’ll ever meet. The letter happened to be my way of letting my physicians know those weren’t the beliefs I held, which in turn has made them care for me in a more personal manner.

I believe we are all a culmination of our stories. Everything we think and do is driven by the stories we experience and buy in to. Our society has a lot of stories around illness and death in particular; how we should feel about it, how difficult it is, what it means to us and our families. I found many of these cultural stories caused me and others pain. More pain didn’t really interest me. People say things like, “Knowing you’ll have two young children left behind when you die must be horrible. It must be hard to get through the day with such high levels of physical pain. Losing your own child must be the worst experience imaginable.” These words to me are nothing more than a story, and I have the ability to buy into them or not. I’m not saying those stories don’t have their place, they do. I just thoroughly enjoy saying to myself, do I really want to believe them? Do they really serve me? Where’s the law that says this should hurt? I’m not someone who sees a hurdle and is amazing at jumping over it. I actually don’t see the hurdle at all, so for some reason I keep on walking and am rarely hindered. It seems bizarre, but it works for me.

I know I’m healthy. I don’t need to do anything to be healthier, to me I live life fully, every day. What more could I ask for?

I always found it funny that my doctors were so happy to see me when I came in for an appointment, until one of them told me it’s because most days all they see are patients who are sick and irritable. Most people walk into the doctor’s office focused on their pain and the doctor is the one to hear all about it. By the time many people get to the doctor they’re frustrated about being sick, and because our cultural story says it’s awful to be sick, their interactions might reflect that. A doctor’s daily interactions are generally about the difficult, rather than the joyful. I’d never thought about it that way and it gave me a much greater appreciation for the work they do.

Adversity is defined as a state of misfortune or affliction. It’s related to the word “adverse” which means negative or contrary, “a life of hardship”, “a stroke of ill fortune”. I know people might consider what life has dealt me as ill fortune, but I beg to differ. I know that I am the luckiest person you’ll ever meet.

Maureen McCarthy lives an outrageously great life in Flat Rock, NC. She is co-creator of The State of Grace Document with Zelle Nelson and has 2 children Kate, 13 and Kerrigan, 11. She would like to find a huge fields of sunflowers to lie in before she dies.