This started off as a blog entry but ended up something entirely different! I'm thinking I would like to use this as a talk at CF fund raisers and such...Wuddya think?
I don't know about you, but I'm a person who needs something to push against. At work, I need a deadline or I won't get it done. In a game, I need a competitor or I won't care enough to play. In conversation, I most enjoy when I can assume the role of devil's advocate.
Perhaps it's this mentality that makes it possible for cystic fibrosis to be such a perfect companion for me. At every turn, I have something to push against--even if it's just to live my life to the fullest before the clock runs out.
I have been lucky in so many ways. One of those is that I never really went through the "why me?"s for more than a few minutes. I guess, deep down, I always knew the answer to "why me." From my earliest childhood memories, I knew CF was a part of my life for a reason. I won't say I chose it, that's a bit too strong, but I understood that it had a purpose and I understood it was there to teach me.
(Perhaps, before we are born, we do get a chance to choose our teachers. Perhaps, I did choose CF. I don't know.)
I don't mean to say that all of my lessons were easy ones. As a child it was difficult to not be able to run like my peers...gym class was a nightmare. Being so sick so often was not something I faced with glee, certainly. Being young and facing mortality, I mean really facing mortality, was heartbreaking.
But out of all those difficult things emerged qualities of myself of which I am most proud.
In my younger years, I was set apart from my peers in many ways, all of them physical. In a society that is focused on sports and beauty, I didn't measure up. I tried to play sports in school, mostly those forced upon me as I mentioned above in dreaded gym class. I was clumsy and struggled for air. (I imagine I'm clumsy naturally, but I'm just going to chalk that up to CF, okay?) My classmates didn't understand what was wrong with me and they would ridicule my performance.
It didn't take very long for me to find a sport that I could do and really enjoyed--at six I began horseback riding and did that until graduation from high school. With that true love waiting for me after school, it was easier to handle my inabilities on the soccer, basketball and, oh god, dodge ball field. Who invented dodge ball anyway? They really should have kept that bright idea to themselves!
As for my appearance, in middle school I was often teased for being so skinny. Not to mention, I had a really strange hairdo, wore an unfortunate selection of clothes and
smeared bold lines of gray and fuchsia across my eyelids. Even still, the thing that the girls really seemed to hone in on was my weight. "Tiffany Toothpick" was my nickname and I was often the target for the popular crowd's emotional sport. I won't pretend that wasn't a difficult time for me. The end result, however, was that I didn't fall in line with what "all the kids were doing." Their cruelty was my fuel to figure out who I was as an individual. Had I been a part of that crowd, I shudder to think how I would have turned out.
As for being sick so often--that taught me many profound lessons. Live in the moment is one of those. Nothing is permanent is another. But, perhaps my favorite lesson is one that I stumbled upon when I was in college.
I was attending North Carolina School of the Arts in the actor training program. We had many unusual classes during the day. A favorite of mine, and many of the rest of my small class, was an acting course taught by a Turkish woman named Cheedem. Before every class, Cheedem turned off all of the lights in her room and left us alone for about ten minutes. During that time, we all sat on the floor in a circle and meditated. The purpose was to ground us and help connect us before we began working together. Usually, Cheedem would come in and watch us for a minute or two before quietly whispering that it was time to "come back" and get in our seats. The people in my class cherished this time of stillness and peace.
On day, we did our meditation, just like every other day, and Cheedem came in after about ten minutes and sat down, just like usual. On this day, however, she did not sweetly whisper that it was time to get up. Instead, she screamed and clapped and yelled "Get up, Get up, Now Now Now!" People flew up off of the floor, wild eyed and confused. When everyone was standing, she barked "Do what you feel! Do what you feel!" Now, keep in mind, these are drama students--the reactions were oh, so dramatic! A few people stormed out of the room. One woman screamed in Cheedem's face. One guy cried. A lot of people beat the wall. My reaction? I walked back to the place where I had been sitting and sat back down.
For weeks, I thought about that exercise. I felt dull and uninspired because my reaction had been so much less "dynamic" than those of my classmates. One day, Cheedem bumped into me in the hallway and pulled me to the side. She told me that she was puzzled by the reactions of my class and that she was startled by the level of anger and confusion they displayed. She had thought most people would do as I did. After thinking about it more, Cheedem said she realized that it made perfect sense. After all I had been through in my life, I had become accustomed to handling unexpected disruptions and had the ability to recover from them in a way my peers did not. Cheedem touched on something that day that I carry with me always. I am resilient. I will fall, but I pop up like a spring! This resiliency is something I am so proud of. CF taught me that in a profound way.
Finally, I mentioned facing my own mortality. Not in a theoretical kind of way--in a real, no kidding kind of way. There are so many things I learned from that. I had to write a book just to list them all! (Don't forget to get yourself a copy of Sick Girl Speaks! by the way!) Perhaps the most important of all of those lessons was the discovery of who I truly am. When I used to hear people say that, I assumed they meant that they were nice, or smart, or loving or whatever. What I found was a bit deeper than that.
The first part of facing my mortality was going through what I call the Illness Identity Crisis. Essentially, I had to figure out who I was not. I was not an actress--I gave that up when I became very ill. I was not funny--my sense of humor dried up the sicker I got. I was not spiritual--God and I had a falling out for awhile. Who was I if I was not all of these things? I had no idea and I felt very lost. I had no identity, no purpose.
As I became sicker, it began to become clear. It was like the pealing of an onion. Finally, when all of the layers were gone, I was left with the core. I found my core. I can't tell you what that is, unfortunately. There are no adjectives to describe it. There are no duties to define it. All I know is that my core is the permanent part of me that is never sick, never tired and never scared. This depth of knowledge about myself is a gift I carry with me all the time. CF gave me that gift, and so many others.
Today, I am 34. I am healthy and happy. That doesn't change the fact that I need something to push against. I am working to make a living as a public speaker and educate patients and doctors about all that I have learned in my career as a patient. Every day, I push against CF by saying "I will live today so that, when it is time to say my final goodbye, I will be proud of the life I've lived."
I don't ask why me. I am simply humbled by the wisdom of having CF as my life's companion. I have something to push against. While I'm not always happy about it, I can not deny, CF is my greatest teacher.