Welcome to attitude ad nauseam. I thought we had beaten this particular subject to death. Then a thoughtful note from Esther, who lives north of Boston, showed up in my Journey Man email. Esther is not comfortable with the tone of many of my posts about MS. “I think that your opinions are quite negative and do not reflect the opinions of those who have a positive attitude towards life. I watch my wonderful Stephen live his life with so much joy.”
Esther’s husband was diagnosed with MS in 2008, in a wheelchair by 2010. “I watch my wonderful Stephen live his life with so much joy, laughter and love. He is always the center of attention and we enjoy all that life has to offer.” I think that is great. Why would Esther assume I live a life without those fabulous things?
Of course, someone else in my house usually becomes the center of attention. That is okay. She deserves that honor. I like to think that I enjoy a full life. Charles Dickens did not dream me up. Esther does make a good point about the benefits of the positive attitude. I am not a perfect person and slip; onto the dark side occasionally. I know that and am trying to keep the curtains open.
As I told Esther, I believe there is a distinction between negative and realistic. There is not enough dialogue about the real coping that must be done. I do not intend to frame this “scum sucking pig of a disease,” as Teri Garr puts it, as anything but miserable. I applaud Esther and Stephen for staying positive, but if they really are happy campers, I am missing the boat.
MS sucks. It just does. I am not beating my breast or playing the victim, but it is not a vital piece of my good life. Actually, I could live without it. I do not consider that negative. I hate it when others call me negative. Not to sound negative. I understand Esther is not claiming Illness as a good thing, but she does not appear to have a critical bone in her body. Good for her. Really.
I told Piers Morgan I have a great life, and I do.