Years ago, I would sit in the empty church where Michael and I met playing music and tried to take all my fears of the bad diagnosis and leave them there. I would sit quietly and not ask for a cure but for understanding and guidance. What was I to do with this horrible diagnosis because I was not going to fall to it? I was not going to die on cue, as expected. I was not going to be depressed or miserable to live with. I was not going to give up in anyway.
As my life with a bad diagnosis unfolded, suddenly I found myself being able to comfort and give information to people who were newly diagnosed. I had a gift for it. It took a few years for me to realize that this was the reason I got this disease. I thought my job working with kids, music and business was the peak of my life. The culmination of my life experiences. The perfect job. Then, I realized that it was only the portal to becoming ill and that experiencing this illness is my real life's work.
Sitting on a Board at our university hospital, speaking with newly diagnosed people in pulmonary rehab, being a member of the ILD Support Group and speaking to groups of doctors has been so satisfying for me. I feel like I am making a difference. The most time consuming, but most satisfying, is when I am speaking one-on-one with a person or family dealing with all the issues of having a chronic lung disease. I so hope I offer hope and confidence and information.
I often say that I am just a bit further down the road of experiences with the disease.
Today, Michael and I are having lunch with a couple who need a conversation. It is an honor that they are allowing me to meet with them. Hopefully, I can offer information and hope.