Leaving school behind was intensely painful. It wasn’t me that wanted to quit, it was this stupid body, these stupid lungs, that kept me from finishing what I had started. What I didn’t know at the time was that walking away from college was only the beginning of a long list of things I would never finish. My CF just kept getting in the way of my big (and little) plans. I had to mourn the loss of my future.
After I left school, I was placed on the lung transplant list. The allocation system was different back then and I knew I had a long wait in front of me. For awhile, I tried to continue on, business as usual. I auditioned for, and got, a part in a community theater play. Everything was going fine until I had a horrible coughing attack in the middle of a performance—the kind that comes from the bottom of your toes and there’s no holding it back. This was embarrassing for me and traumatic for my cast mates and the audience members. This was the last play I was in.
From there, I tried to move into directing but my declining health proved an obstacle once again. The stress and physical exertion it took out of me was too much. By the time the show was up and running, I was in the hospital with a raging lung infection and I never got to see the play I had worked so hard to pull together.
Little by little, all of who I thought I was got stripped away. Who was I if I wasn’t an actor or a director? What was the purpose of my life if I could no longer do the things that gave my life meaning?
And it didn’t stop with my career. As I became sicker, more and more of the things that defined me began to fall away. I got a job as a part-time receptionist but, despite my employer’s enthusiasm for my work, I quit after only a few months. The constant IVs and lung infections made even part-time work too difficult. About the time I went on oxygen full time I stopped dating, traveling, driving and living on my own. My independence had been lost. The world became a place filled with obstacles—even stairs became a threat to my well-being. There was very little left of who I had been.
That was when it happened. After the crying was done and I had mourned my losses, a new part of me began to open up. This was a part of me I had never known before—an inner world I never knew existed. I had met a new best friend, a person who made me laugh and always knew the perfect thing to say. The amazing part was: that best friend was me.
In time, I explored an inner landscape filled with new ideas and a raw honesty. I stopped needing to tell people about who I used to be and what I used to do. Those things no longer felt like an important definition for my life. Instead, I invited people to look past the oxygen tubing and the labored breathing and see the truth of who I was. Through my losses, I had made a brilliant discovery—The Permanent Me.
The Permanent Me did not need labels or job descriptions to know she was valuable. Nor did I need my health to enjoy living. Armed with my new best friend at my side (me) I felt more alive than ever before.
I don’t mean to suggest that I did not have days of pain or difficulty. Waiting for a transplant, after all, has many challenges. But even on my worst days, there was a part of me that was never scared, never sick and never tired. I had connected with the “me” who was fulfilled even if the day's major activity consisted of getting from the couch to the bedroom. I loved myself for merely existing.
Now that I have had two transplants and am enjoying the greatest health of my life, I struggle to remember what it was like to live without society’s labels. I am back in the world, working and trying to find “value” in the time I have on this earth. The idea of losing my independence and giving up all I have made my life to be strikes fear in my heart. I don’t want to say goodbye to everything. I like my labels!
Yet, when the day comes that I have to begin stripping away all of who I have become, I will take solace in knowing that The Permanent Me is waiting, ready to be my best friend again. The Permanent Me has taught me the greatest lesson of all: I am not illness. Even when my body is broken, I am beautiful and irreplaceable. I have nothing to prove—I am perfect just as I am.
My wish for all of those who must suffer the losses that come with illness is that they too will discover The Permanent Me inside.