During my first year of teaching at the University of Cincinnati, the father of one of my students appeared at my office door one day. It was Ash Wednesday and he wore the requisite symbol of the occasion on his forehead. Initially, I was unsure why he had come, but once he began to talk I realized that he simply wanted me to know that his son had not always been the young man whose emotional outbursts and tendency to wander in and out of the classroom had disrupted and frustrated me for most of the term. Though I was prohibited by law from discussing the son’s behavior and progress with the father, I felt the intensity of his grief, so I did what any of us would: I let him talk to me. According to this father’s narrative, the confused and angry young man I knew bore no resemblance to the joyful and intelligent child he had once been—a child whose life seemed charmed and full of promise. As the grief-stricken father talked, he revealed that earlier that year his son had been diagnosed with schizophrenia; he also described the family’s harrowing battle to find help for his son in this country’s often insensitive and ineffectual mental health system. He told me that his marriage had disintegrated under the weight of that struggle. That was all he said. For the next few minutes I served as the accidental witness to his mournful weeping. I never again saw the father or his son, but I have thought often them both, the streak of ashes on the father’s forehead a testament to the grief he felt over the loss his son and the son who never finished my course.
Twenty years later, I look back and I understand from painful experience what it’s like to have your core life plans completely obliterated by a life change you could never have imagined. For that father, it was his son’s schizophrenia; for me, it was MS. When I was diagnosed at about this time of the year in 2008 I was initially convinced that my disease would not progress, that I would certainly be one of those people whose MS would be “benign.” By the time I finished my sabbatical in 2009 it was clear that I would not be able to return to work. For a long time – years – I was convinced that my productive life was over, that I had no way of leaving any kind of “mark” on the world. As I have begun to think about it, though, I have realized that there’s really no such thing as leaving a mark on the world – at least not in the way most people think about it. The only thing of any importance that we leave are the memories that resurface in our loved ones’ consciousness from time to time. In other words, what we leave is love. Of course, that sounds pretty sappy, especially for someone like me who tends to dislike the sappy. That said, it’s really true.
We will have done everything right if someone we loved looks at the colorful fall leaves we enjoyed so much and thinks of us, if someone passes a house we once lived in and thinks of the good times they had with us there, or someone remembers with great pleasure any time they spent with us. Those tender feelings we leave with the people we care about are our only necessary legacy. We need not worry about leaving anything else behind because nothing else matters. I have a set of computer files that are Word documents that have starting paragraphs for blog posts. One of them that I wrote recently is focused on the sadness I feel when I think about everyone else going off to school at the beginning of school year. That must’ve been just a few months ago. Honestly, with everything that’s happened I don’t remember writing that paragraph, but when I look at it now I find that I don’t feel that way any longer. I am happy with the life I built at home. The time I spend resting and otherwise taking care of myself makes it possible for me to interact with my children, grandchildren, and other people I love. In other words, I am able to live a life because I accept (maybe even embrace) the limitations this disease imposes on my life.
It has been more than 20 years since I saw that father or his son. I hope that those two decades have been kind to those men. I hope that the father has found some peace in his relationship with his son; I hope that the son has been able to find a treatment that offers as much relief from the disease as possible. As I’ve said in recent posts, I am in the process of returning to myself, of regaining a sense of emotional stability. Sometimes I remember some of the complicated feelings I felt during the year or so when I was having so much trouble with my medications and I become aware of how much emotional pain I was in. It’s hard for me to believe that the person who inhabited my body during that time is the same person who inhabits it now. People keep telling me that I am “back.” I feel that and I hear it in my voice and I see it in the way people respond to me. Part of returning to myself has meant truly accepting that my work in the world is not about leaving something behind or about resisting the limitations imposed by the MS or about trying to be submissive so that I will be lovable despite being handicapped. What I leave behind is not submissiveness; it’s power and love and taking up space in the world. Only that will leave lasting memories. And if I am simply myself residing in my own power and loving as fully as I can, then I have no need to even think about what I will leave behind; that will take care of itself.