I have always thought of all the symptoms my daughter has had as pieces of a "puzzle". It turns out that there were more pieces than I initially thought—I didn’t even recognize small pieces here and there as part of the puzzle.
One would think, then, that we should write down every little thing we can think of to give to any new doctor. After all, we hope that any new doctor might recognize the whole from all the pieces. We don’t want to inadvertently leave what may be a key piece out of the puzzle.
Yet, what I have found is that when presented with even a partial list of nicely typed up puzzle pieces, some doctors will look at the presenter as a crazy parent and outright dismiss parent and child alike. It is a rarer doctor who will take the time to look at the whole picture. (See "Preparing For Doctor Visits" and chapters and charts in the book: "It's Not Mental.")
I was thus intrigued by an advertisement soliciting participants in a schizophrenia research program being conducted jointly by the National Institute of Mental Health (NIMH) and a few participating universities. The advertisement shows a partially put together jigsaw puzzle of a child, and requests that we help solve the “puzzle”.
That is precisely what I dedicated part of my life to—solving the puzzle for at least one particular child—my own. I often wonder how much of what we uncovered in the 20 years since her birth is applicable to other children. I do know that at least we have helped her in the "here-and-now" feel better and have a better life.
We are always happy to contribute to the schizophrenia, schizoaffective, and bipolar research to help future generations. I encourage everyone who can, to participate in these genetic research studies to help benefit humanity.
But, the help we give today to solve the puzzle will go towards helping children 20 years from now. We have children needing their own particular puzzles solved now. Not willing to wait while our daughter’s life was wasted, we went about solving her personal little puzzle.
At least, even with a few pieces still missing her own complex picture, we have her puzzle mostly "solved". We had to create a better picture of her own complex endocrine-metabolic-immune-neurobiology in order to tailor treatment. We had to meet her own body’s specific requirements.
That doesn’t mean we have a magic bullet treatment. Maybe that is what the genetics research may lead to 20 years from now.
But at least we have hobbled together piecemeal treatments for her that are giving her a better quality life than ever predicted. She has beaten the dire prognoses for her life.
But that only happened after we discarded the idea that her type of "schizophrenia" illness was "mental".
Explore More:
Related Books:
Property of: http://www.itsnotmental.com/
Last Updated: 7 August 2011
No comments:
Post a Comment