In the words of E.R. Burroughs John Carter of Mars: "I Still Survive!!"
That small act of defiance to tweak the nose of my illness is a sort of anthem of mine. I wish that I could shout it from the top of a high mountain that I have climbed on my own two feet. Instead I whisper it in the night to the monster who steals my sleep. I chant it over and over in my head while I struggle to walk across a room or across a parking lot. I say it with a sigh of satisfaction after a busy day when I push myself to my limits to enjoy every moment. "I still survive!!"
Some days it is very difficult to utter that phrase. Those days I just want to give up, days when I just want the pain to stop. Days when a fog of pain is all I know. Yet, "I still survive!!"
Having good friends helps to give me the strength and the want to hang on, to reply to the prods and jibes of the D*mn Disease with: "I still survive!!"
Life is lived one day at a time, because every day is different for me. It is a difficult life, and 2010 is a milestone year for me. I have been "officially" severely disabled and practically housebound since 1990. Twenty years waiting in the hope that a cure will come, that maybe treatments will come that will at least free others from my fate. I would be happy if I could trade mostly bedridden for the practically housebound of twenty years ago. Any day that brings a smile and a bit of pleasure counts as a good day and that makes my good days more frequent than my bad ones and hence "I still survive!!"
I have traded hope in a cure for hope in more tangible things. I'm not advising anyone else to give up hoping for medical advances, but I will let them hold that hope for me. I cannot emotionally deal with hopes trashed any longer. Instead I put my hope into smaller things, things that allow me to take my life from that distant day when there is a medical miracle and place it in my own hands. Hope for a good day to celebrate a birthday. Hope of getting strong enough to board a plane and go and visit a friend in Florida, on the opposite side of North America from my home on Vancouver Island. Hope that I will find a dress that fits and looks good on me. Hope that I can sit in my garden and enjoy a few hours of peace and beauty. Small hopes, larger hopes. Hopes that I will someday cross things off of my "Bucket List" as done. As I do these things I smile and say with pleasure and pride: "I still survive!!"
It is a simple statement, but a profound one. This is my reply to those who ask me how I am doing:
I Still Survive!!