I enjoy watching Oprah but today I had quite the emotional breakdown during today's episode. I don't get to watch it very often. I record it regularly but I never seem to find the time to watch. Today I happened to be home folding laundry while the kids were playing and I was able to tune in. Today's episode stopped me in my tracks. In 1987, AIDS patient Mike Sisco jumped into a pool and his town erupted. Oprah hosted a town hall discussion 23 years ago and in today's episode she returned to Williamsburg, West Virgina to interview some of those involved. The subject matter itself was riveting. So much has changed in 23 years. There was so much anger and fear about AIDS then. Here's the link with information about the episode: Oprah Returns to Williamson
At one point they had a doctor share information about patients living with AIDS and they shared that the average life span of someone with AIDS in 1987 was 18 months and now 23 years later the average life span of someone living with AIDS is 22 and a half years. As soon as I heard that everything seemed to snap. AIDS is being cured in my lifetime. The average life expectancy for someone diagnosed with AIDS today is years LONGER than the lifespan of someone with Sanfilippo syndrome. I have been rolling that thought around in my head all day long. Someone with AIDS will likely live longer than my daughter.
I absolutely believe that they will find a cure for AIDS in my lifetime, that thought doesn't seem far fetched to me. I don't have nearly the same confidence in a cure for Sanfilippo syndrome. I do have hope. But I'm also completely overwhelmed by feelings of inadequacy, I should be doing more, raising more awareness, talking to more doctors, fighting for more research. Instead I spent most of the afternoon cuddling and playing with Olivia. I'm just too overwhelmed and I don't know where to start or what I should do. I am so lost tonight.
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3 comments:
Hi Laurie - My cousin has Rett syndrome and for several years my family organized a bicycle race to raise awareness and money. I was in elementary school, so my memory is a little fuzzy, but I think we had 100+ participants and each person paid a registration fee. I'm not exactly sure where the money was donated, but it was for research. If you're ever interested in doing something like that, my aunt and uncle might be willing to share their experience. On the other hand, cuddling and playing is an excellent way to spend your time!!
You know what you should be doing and you are doing it. "I spent most of the afternoon cuddling and playing with Olivia" Love her. That is what she needs. I've had my moments this week as well. Maybe something with the holidays. You guys focus on a Merry Christmas.
Hugs to you, Laurie. I'm glad you're able to reach out with your feelings through this blog--I know connecting with others in times like this is so important.
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