Thought 12: What are you afraid of . . .

The year I turned 12 years old was a big transition time for me and my family. I saw my oldest brother go off to college, which was hard for me. My family moved from Titusville, the only town I had ever known, to Tallahassee, a huge city in my eyes. I was so young for my grade, so my parents decided to use the transition time and new school to have me repeat 6th grade. It was a gift and gave me an extra year to mature emotionally. However, with all of these changes, I was so scared to leave behind my friends and everything familiar. 

I live with a lot of fears, some valid and some irrational. Some could be labeled worries I guess as I have developed worrying into an art. When I was thinking about what I had shared through this blog so far, I knew there were significant parts of the story that still needed to be discussed. I have shared what happened and some of the feelings behind it. I want to be motivational and show how well I am doing now. However, I am not doing my story justice if I don't explore some of the darker moments and more difficult feelings.

We all are met with moments in our lives when we are faced with our worst fears. I have unfortunately had a few friends experience this over the past week. Although I have done my best to stay positive over the years, I have had moments when my fears just took over. I remember when I was sitting in the patient room at the Mayo Clinic in Rochester with my parents and Bob. After a series of tests and evaluations, they confirmed with me that I had Crohn's Disease. The only experience I had ever had with this diagnosis was through my dad, which was many years of being extremely sick and a surgery that almost took his life when I was four years old. I sat there feeling so very sick, and with very little education and information, I was terrified.

Another moment was standing in the hallway of a hotel in Tampa trying to muster the energy to go to my grandmother's funeral. I was in the worst pain of my life, holding onto the wall while I walked to the elevator. I had just had my first surgery two weeks before when they removed most of my large intestine. I insisted on coming down to her funeral. I thought the pain would eventually go away. We were all so naive back then. Little did I know that I had a perforation at my incision site that I lived with for 5 days. When we flew back to Michigan, my mom and Bob took me straight back to the hospital. If there was ever a moment when my life was in danger, this would have been it. I was terrified. They performed emergency surgery on me in the middle of the night.

I will never forget when Bob and I were sitting on a bench outside the University of Chicago. My surgeon in Michigan had tried everything he knew to do and I was just not getting better. He referred me to a doctor in Chicago to get one more opinion. I had reached the end of my road with options and the one thing I was trying to avoid was coming back as my only option - a permanent illeostomy (www.ostomy.org/ostomy_info/factsheets/facts_ileostomy_en.shtml). My dad has had one since his surgery that saved his life. I had already had two temporary ones throughout the course of my surgeries in the years prior, but I was trying everything to avoid this life-altering change. Looking back, I wish I had the surgery for a permanent illeostomy from the very beginning. It gave me my life back and enabled me to return to the healthy person I am today. Bob and I were so scared sitting on that bench in Chicago, on the phone with both our parents, knowing what we had to do. I have been fearful of making this part of me public, but I am not ashamed. It is my ticket to having my life back. I want severe Crohn's patients and others faced with this decision to know that a better life is possible.

Outside of July 28, 2009, the day we lost my beloved mother to ALS, the most fearful moment of my life was when my mom called me from John Hopkins University Hospital and she shared her diagnosis. I was in Detroit and had just left work at the Detroit Symphony Orchestra. I pulled my car over and sat there in shock. Her life, my life, my family's world was shattered. We were not expecting this and we all just stopped in our tracks. I immediately got on a plane to Washington D.C. to be with my parents and my aunt and uncle that lived there.

So, these are a few of my more difficult moments, along with many in between. We all have them and live with them. There are many fears yet to be realized, but I know the experiences I have had along the way and the strength that I have gained will guide me through it. One thing I have learned is you cannot live in fear. Over the years, especially waiting and trying to be parents, we put things off because we were scared things would not work out. This fear of moving forward only leads to regret. You have to sit in your fears sometimes and work to understand them. I remember how scared I was the day the doctor called me back to tell me that I had a malignant tumor in my left kidney. I was at the park with Megan and standing in the middle of this big field with my friends watching Megan on the side. I did not know at the time it was operable. The same month I had it removed I lost two friends, in their 30s like me, to breast and colon cancer. Now, those are deep fears.

When it comes down to it, my greatest fears now reside around the health and well being of my family. Beyond that, I feel like we can work it out some how. I am blessed in immeasurable ways. But fears and living with them is a part of life. I am lucky to be surrounded with the most special family on both sides and the greatest friends. I continue to work through the emotions of what I have been through. This blog is one way I am trying to let some of those feelings go and use my experiences to help others. Life is so hard, which is why we have to all be in it together.