Advocacy Day

Today was mini-advocacy day. I got to work early, ran through a few things, and headed out. Typical rush-hour congestion on the Metro, but I got a seat after people got off at Rosslyn. I took the train to Metro Center and, rather than transfer, I walked the extra block. It was cold with a light snow -- perfect weather, and I wished I was running.

I found my way to The Renaissance Hotel and meeting room 15 and, since I didn't know anybody, found an empty seat at one of the tables. It didn't take long for me to meet other people -- and other people with ALS -- and we slipped into the sort of conversations typical in this community: when were your first symptoms, when were you diagnosed, what was your onset, etc. I also met people who had family members who had ALS, including some of the association staff members. Two of the women from my chapter had lost a parent to the disease; their involvement with the Association did not cease after their parents' death. I think that is commendable.

I met one man whose son was diagnosed at the age of 18. The young man is now 27. His parents have cared for him his whole life, and he is now (according to his father) close to locked-in syndrome -- where nothing except the eyes work. Listening to this man speak, I was struck with the thought that he would have given anything to have borne this burden in place of his son. My heart ached with the thought of watching a child suffer with this disease. I was reminded of something I said in the early days of my diagnosis, that if my having this illness meant that someone I love did not, it was worth it. My heart goes out to this man and his wife as they care for their son. It must break their hearts every day.

The meetings on the Hill were interesting. We met with staff members in the offices of Congressman Moran and Congressman Wolfe, and made an unscheduled visit to Congressman Connolly's office. On the Senate side we split up, one group going to Senator Webb's and the other going to Senator Warner's. I was with the Warner group. All the staff members were kind and seemed interested, but you could also tell they were thinking about their next meeting and all they had to do. It was nice that they met with us at all.

All of a sudden, I am so tired I can hardly keep my eyes open. Sweet dreams.