I returned from Hawaii to requests to post these powerful statements of our efforts to get help and to help ourselves:
- The WPI’s response to the Singh study. link
- Angel Mac’s notes from her wonderful, authentic CFSAC testimony. link
- Mindy Kitei’s moving testimony before the CFSAC. YouTube
- Demonstration before the Department of Health and Human Services. YouTube link to Rivka’s write-up
- Updated healKick social networking for young adults. link
I got called on my description of myself as being at 90% by a number of people. I was foolish to attempt to quantify it. I certainly didn’t mean that I felt recovered to 90% of my baseline when I got sick in 1995; I meant that I was feeling pretty close to what I might expect of this body now, which has definitely been through the mill. I am still doing very well since returning home, even after the red eye and missing a night of sleep. I expected to feel the altitude by now and I do feel a little weaker, but I don’t feel particularly sick. More like I’ve been sick for a long time and need rehab. I can get up at will and do what I need to. I’m not short of breath, though I haven’t exerted myself like I did in Hawaii. Still sleeping well. No real physical suffering at all. Ali however continues to struggle. Nothing fair about this disease.