About two years ago I felt impressed to write my story of living with von Willebrand disease in the form of a song. By the time it was completed, I had added a PowerPoint presentation to go along with it. “Why am I putting myself through this?” was a question I asked myself several times as I worked on the difficult project. It wasn’t until I started sharing my song with others that I finally understood the answer to my question.
I discovered was that I had some unresolved feelings about my disease. I realized that I had not experienced closure with the death of my little brother. When he was born he had a brain bleed, was in an incubator for two days, and then he was gone. I never got to see him. There was no funeral nor was there a grave. I found a picture of an incubator online to represent him in my PowerPoint presentation. This gave me closure.
Through the years von Willebrand disease has been my enemy. It has always interfered with my life. By the time I finished my song, I started to embrace it as a part of me.
As I have had opportunities to share my presentation at vWD retreats, I have been able to connect with others who also have unresolved feelings and frustrations. My song has become a vehicle to help others with vWD, or any other chronic disease, feel comfortable to share their stories. I feel that is the most wonderful thing about my song.
Sharing my story is a two-way medicine. I feel better when I have someone listen to me, just as others feel better when I listen to them. There is much to be gained as we connect with each other.
I am grateful for the Utah Hemophilia Foundation that provides opportunities for us to meet together and share our stories. At those gatherings I feel comfortable to talk about blood and bleeding and not feel like I will offend anyone. I can talk about my concerns and receive empathy and encouragement. Our bleeding disorders community is important to me.
