On September 25, 2007, my sister Diane had surgery that changed her life, The surgery to remove a tumor from her optic nerve went terribly wrong, Diane was left with severe brain damage to the left frontal lobe. For months, the doctores told us she wasn’t going to wake up and if she did, she would be in a vegetative state. No one could offer any hope for her future except to suggest that we prepare for the worst. Once Diane defied all of the predictions of her doctors and not only woke up from the coma, she was alert and aware of her surroundings. she was blind in her left eye and could not move her right side, but her left arm and leg were strong. Her speech was profoundly impaired, but she did manage to communicate with single words and gestures. While she was hardly her robust former self, my sister was still in that severely damaged body and for the first time, we had hope for her future. maybe the same medical profession that “broke” her could offer some way for her to regain at least a protion of what she lost. At first, she made steady progress with traditional speech and physical therapy. She was working on regaining some independence and we actually have some video of her getting up on her own two feet and walking with a lot of help from her therapists. But after she suffered some setbacks due to seizures and bouts with pneumonia, her progress palateued and her insurance stopped allowing her to have therapy. Since she wasn’t progressing quickly enough, she was not eligible for any therapy at all. I never realized that there was no such thing as gradual progression or therapy at your own pace in the world of medical coverage – both private insurance and medicaid – Diane had both and neither could help her get what she needed. Still we hoped that there was someone out there with a therapy or treatment that may help improve the quality of her life. Surely someone must be doing research into brain functions and nerve regeneration or re-purposing?
I started searching for places that may offer specialized therapy for someone with Diane’s severe level of brain damage. Unfortunately, I found many organizations who lobby for funding and several doing research but only a few offering actual treatment and none offering anything innovative for someone with Diane’s severe problems. I had always thought that the problem would be funding the treament Diane needed, but now I realized that the treatment may not exist. the reasons for this are not entirely clear, we can treat cancer with amazing success now, AIDS is no longer the certain death sentence it once was but we still haven’t unlocked the mysteries of the human brain. There have been studies showing that despite the long help belief that brain cells do not regenerate, this may not be true and in fact sometimes functions done by that lost cell can be taken over by other cells. So many possibilities, but so little that we can actually do to help Diane regain her ability to talk, walk and do anything independently. so, with treatment limited to things that will just keep her alive, Diane sits in a nursing home that provides her with basic care but that can’t offer her any treatment or therapy that might improve her future. My question to all of these lobbying groups is where does all the money you successfully lobby go? Where is the data from the research you have funded? How much of the funds have actually gone for research and how much of it has gone to fund additional lobbying?
We all realize at this point that there is no miracle cure for Diane’s condition. However, it is frustrating that even with good insurance and a specialized care account that will provide anything she needs that insurance can’t cover that her treatment options are so limited. At this point, we are willing to send her anywhere if there is hope for some improvement for her. Our dream is that one day she will be able to spend days with her family and friends at the beach or even just sit around the kitchen table with us at family gatherings. We would like her to have all the support and therapy she needs to stay as healthy and active as she possibly can. With all of the amazing technilogy we have in this modern enlightened word we live in , we still don’t fully understand what makes our bodies function the way they do.