I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.
Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).
At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.
When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?
I realized that her parents have somehow come to terms with uncertainty, as we all must.
In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.
I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.
But just as Monica’s parents have learned to deal with that uncertainty, so must I.
Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.
I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.
The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.
I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing, living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.
October 27, 2010