Thursday, November 22, 2012

Waiting for the time...

I've been waiting for the time to write another blog entry. It's been exactly a year and a half since I last wrote something! The time has flown by. Since May of 2011, I have been living My life! I've often thought to myself every month 'Hey go write a post', I know people who don't live near me have wondered if I am OK. I've gotten a few emails asking if I was still here. Obviously, the answer is yes. Something amazing happened after that last post. For the first time in my adult life I was able to start living and not worrying about my health. For the first time that I can ever remember I would have mornings where I would wake up, jump out of bed, get ready for my day and not even think for one second that I had Cystic Fibrosis! I have simply felt that good. That “normal”, the way everyone should feel.

As a child growing up with a disease like CF it is impossible to ignore the disease. It is always in the back of your head. I've been waiting for the time when the thoughts in my head did not start with my health, or of how I was going to feel that day. Of just making it through the day.

The last 18 months, I have been absorbing life, the earth, and humanity. Living more in the moment, reaching out to people, acknowledging people's struggles, people's stories, taking in the surroundings, the time of now. I've been fortunate to continue to get stronger and do so many things: Hiking up in the mountains in Vermont, reaching a mountain waterfall and jumping 20 feet into the water below. Camping with the boys, road biking (albeit briefly), going for runs, swimming again, Crossfit! Being the parent representative in the Coaches/Parents team relay at the divisional swim-meet for the boys (winning my leg I might add). Watching the boys be successful and more relaxed with their lives and their journey. Putting down their guard, finally, and feeling safe that I am not sick anymore. Going to the Ocean and body surfing. Skiing in Rockies with my best friend. Taking in the air, the altitude, the peacefulness of being alone on skis. Traveling to visit friends when the desire or opportunity presents itself. Seeing Phish in San Francisco with 7k other excited people. Testifying on Capitol Hill about CF Research and funding needs. Speaking at fundraisers and sharing my story. Challenging myself to see what might be possible, but living my life, and doing what moves me. Anything is possible...

I have had some smaller issues, life has not been perfect. The immunosuprression is challenging. My sinus issues are more intense, I develop staph infections with just the smallest cut or pimple. My skin and hair have dried out, I might be actually losing some hair! Haha, but I can not look for any sympathy on that one, I have plenty to spare. My circulation and 'prograf' brain are real issues that if you are lucky enough to get into the 3rd year of a post transplant life you realize are issues that are here to stay. These changes though are a small price to pay for being alive. For being able to watch Simon and Matias grow up. For hanging out with the people you love and realizing that there are so many incredible people out there.

I was waiting for the time to be able to meet with Randy McGowan, Clayton (my donor's) father. We were able to meet down in Chapel Hill for one of my doctors visits. We spent about 4 hours with each other. When we stood face to face it was as if we already knew each other. Not many words were necessary. But by the end of the day we could talk about anything. Whatever difficult set of circumstances that brought the two of us together will never be understood, but it exists and the power of it needs to always be remembered.
This disease never truly leaves your mind, once you are exposed to it. Either through your own diagnosis, or by someone you may know who has CF it is a part of you. Over the last 2 years, I have known people who have lost their battle. Who died waiting for a transplant or who did not qualify for a second, after the first failed. I see the courage that my friends with this disease exude when still dealing with major issues either before transplant or after, like I did. Your time here is not guaranteed, all that is guaranteed is the love and friendship you develop between people. The human connection and spirit.

So on this Thanksgiving Day, I am thankful for all my friends, new, old, and future people yet to meet. Thankful for the opportunity to be alive. I thank all my doctors, surgeons, and nurses through the years. I'm thankful that this blog has come full circle. The original title 'Down with disease'. I've been down with this disease my whole life, but my wish has always been that I would defeat it and leave it behind me, “Waiting for the time that I can finally say, this has all been wonderful, but now I'm on my way...” I thank everyone for your support and for following me and caring about me, but for now and the future know that I am OK, I'm great and I am on my way....

Love to all,
Thanksgiving Day

Mitch and Randy McGowan-Claytons's Dad
PS: This original blog was started and dedicated to my Mom, Gayle, for her tireless effort in making sure I survived. The blog ends with adding a dedication to Clayton McGowan, my donor. Clayton, I dedicate the conclusion of this blog to you, for your selfless act of thoughtfulness which made you check that box on your drivers license application...

1 comment:

Anonymous said...

I've been out 7 years since my transplant and I've learned that my lungs are now failing, it's been such an emotional rollercoaster. Any advice on how to make it through this process a second time? My first time was very difficult, afterwards I soared. But I know the second time is even more riskier than the first time. And I'm having a hard time keeping an eye on the prize, so to speak