My Grief Story
The starting point for this blog is my own experience with grief, so I’ll give more background here. My first-born child, Jesse, was born with hydrocephalus. In hydrocephalus the ventricles,or cavities, that produce cerebrospinal fluid which cushions the brain from the jackhammer blows of running, walking, and standing, fail to drain their excess fluid. They become engorged and put pressure on the brain while expanding the size of the head. Without treatment, death comes early.
Jesse had three operations for hydrocephalus during the first eighteen months of his life and was asymptomatic for the rest of his life. His parents’ and later his step parents’ worry did not disappear with his remission, and Jesse, a talented artist, drew thousands of huge-headed, mostly comic, characters throughout his life.
At age 15 Jesse was diagnosed with ulcerative colitis, an autoimmune disease that produces angry red sores on the inner lining of the colon down to the rectum. At seventeen he had surgery to correct this condition but was diagnosed with early-stage cirrhosis.
At age nineteen Jesse received a liver transplant, but a perforation of his colon and delay in finding it led to many follow-up surgeries, accompanied by hope and despair for him, his family, and the many doctors and nurses who cared for him.
I suggested last week that the biography of the grief—the grieving person’s relationship to the deceased, the conditions of the person’s death—can shape the person’s grief.
The biography of grief for me and my family includes:
—the gift of life made possible by the misfortune of another.
—a drumbeat of optimism aimed at normalizing and encouraging (prospective) participation in a process that is not normal and carries high risk.
—the possibility that medical error occurred.
—the death of a child before his parents, who expect their children to survive them.
—the fear that even the sacredness of death will get buried as day-to-day life goes on.
And our biography includes long-time grief. We live our lives, have ups and downs like others.
We tell hilarious Jesse stories. Grief, in some ways, enriches our lives by reminding us of the preciousness of, how quickly it can pass, like a shadow down the street. And we have hope in our lives. There is no ‘false hope,’ a term that, unfortunately, good people including doctors sometimes use. There is hope that is more or less likely to be fulfilled, but there is no false hope. Hope is, as grief is.
There are many other grief occasions and forms that I will explore as well, starting with the next blog.
