I’ve been thinking about vanishing white brain matter a lot lately. I’m a social scientist by training, so I don’t totally understand the brain’s composition of bundles of myelinated nerve cells. I just know that my immediate family is lacking some seriously important white brain matter. With the deterioration of white brain matter, one loses memory, motor skills and cognitive abilities. That old 1980s public service announcement from the Drug-free America with the frying egg on a hot skillet is what I visualize when I think of diminishing white brain matter:
My 7 year old daughter, who I most often write about here on the Hopeful Parents blog, has a fatal degenerative disorder that affects her nervous system and white brain matter. My 70 year old mother has Alzheimer’s. We are mortals, and we will all die. Krabbe disease occurs in about 1 in 100,000 births; 1 in 8 older American adults has Alzheimer’s disease. There is 100% guarantee we will not live eternally, but most of us don’t know under circumstances we will leave this earth and our physical bodies. However, much like my own breast cancer diagnosis a couple of years ago, I’m less distraught about my mother’s dementia diagnosis. Somehow as adults get older, it seems “normal” that our cells would mutate or diminish in measurable ways. I have grown to accept that as people age, we slow down, get weirder, go see the doctors more, get more teeth pulled. I have many friends who have lost one or both parents over the last few years or their parents are becoming increasingly frail. It’s a rite of passage for us—we are the ones doing the caretaking of and decision-making for their parents. We may be peripherally or intensely involved in the medical care for our parents. We also are becoming adult orphans—adult children with no living parents. For some of us who may not necessarily have had strong maternal bonds, such parental abandonment does not feel quite so different as when our parents were more physically well or living. To be a motherless (adult) child somehow does not feel that scary to me.
On the other hand, to lose my own child is a constant and scary prospect. Seven years into my daughter’s illness, I still cannot quite tolerate the freak collision of autosomal recessive genes that produced a fatally ill child while her twin sister is totally healthy and neurotypical. My partner and I are running a marathon here. I am forever grateful I have twin girls, yet also constantly fearful for Sylvie’s twin sister who will be left behind when her sister finally dies an early death. Thankfully for producing twins, I will not be entirely childless, but I will be less one child.
Kirsten Isgro in Vermont
Kirsten Isgro in Vermont