Max was 2 or 3 years old when I first met you. I had been told about this conference happening in Sturbridge, Massachusetts. I really didn’t even know what it was for, but at that point I was desperate to be connected with anyone who had hemophilia.
It was a little shocking to be introduced to the hemophilia holocaust this way. It was also the best thing that had happened to me since I found out Max had hemophilia. He had been getting tested for HIV since birth because no one was sure that the risk had gone away. I had known a couple of men with hemophilia and HIV, but until that conference I didn’t really get it. I went to meeting after meeting and you were aggressive and determined; you never sugar coated what was happening. On the final morning we gathered and you asked if there were comments or questions. I vividly recall putting my hand up and thanking the Committee of Ten Thousand (COTT) for the knowledge I had just received. I recall saying I hoped I could have the courage to stand up for things the way the members of COTT did. To me it felt like my voice was shaking and I was sure I would be told to be quiet, but I wasn’t.
Fast forward across the years to various meetings and legislative events. There would always be the microphone in the aisle for comments. When it came time for those comments you would get up and get in line, waiting patiently until it was your turn to speak. You would talk about the really uncomfortable things. You would raise your voice and demand change. I often thought I didn’t know anyone with as much courage as you. I wished I could be so brave.
More years passed and when my son turned 17 he started telling me about these meetings he and his friend would go to at national events. Max talked about how he felt so connected with the older men because he hadn’t been raised on prophy and he often walked with a limp or had to use a cane or a cart. He talked about how important it was to know about our history. I felt like he was teaching me.
Because of him I even gathered the courage to talk to you. I found the guts to get involved when COTT asked for community members to join their conference calls and talk about what was important to this generation.
You know what I found out? You were bigger than your voice. You had compassion as well as passion. You had knowledge and experience. During these calls before the business started it was you that asked about everyone and their families. You never forgot who had said what and who had an issue they wanted to talk about. Through it all you spoke with that calm clear voice. When I’d see you, you always asked how Max was, and you gave him your experiences to try to ease his path, whether he wanted them or not!
The biggest thing I learned from you is to stand up, because to have stood up and get booed down was far better than never to have stood up at all.
Words on paper can’t express how you changed who I have become. Thank you is not nearly enough.
Maryann and her adult son, Max, live in New Hampshire.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.