Not Doing Myself Any Favours…

It was two years ago today that I was interviewed by CBC Radio on the subject of rare illness in Canada. How difficult it is to recall that day; hope that a new treatment would offer relief from the pain (which it did to some degree for about six months), my husband cheering me on teary-eyed from the green room – telling me how very proud he was to be at my side throughout this battle. And he spent the next few days emailing just about everyone he knew to tell them about the interview, letting them know how much he appreciated that I continued to keep a smile on my face, that as best I could I was trying to keep life “normal”. It seems a very cruel joke that the particulars of that day stand out so clearly in my memory as I soldier on by myself.

What is normal? My days look very different than they did two years ago. If you visit me at home in my bedroom, besides the oxygen hose you might be hard pressed to know that I’m ill. I’m constantly told how well I look. If I try to stand it quickly becomes apparent that something is very wrong. Going without the oxygen means that I’ll have difficulty speaking. So in bed hooked up to oxygen is how I must stay most of the time.

What is a terminally ill patient supposed to look like?

Growing up, in my ignorance I believed terminally ill meant a patient confined to a hospital bed; machines clicking and whirring above the laboured breathing of the patient.

Until I met other terminally ill patients over the last two years did it hit me that one could know that death was on its way within a somewhat predictable time frame; yet the patient still look quite healthy. Still active with family and friends, perhaps even continuing to work.

I’ve come a long way in understanding what “living while dying” could look like. Sadly I’m now much closer to the scenario imagined in my youth; however I continue to engage in however many ways I can with friends and family.

I have no idea how to respond to others telling me “but you don’t look sick!” when they visit. It’s well-intentioned and caring, and I don’t dismiss that.

There’s a firestorm on the inside. Pain, discomfort, conflicting feelings about what is happening inside me and around me. A clear understanding that this battle is nearing the end. I refuse to say that I’ll have lost the battle when I pass, that would suggest I haven’t tried hard enough. You may interpret my decisions along the way as you wish, my definition of “trying hard enough” is my own personal business. I’m at peace with my treatment choices (or choices to forego treatment) and that’s all that should matter.

My gift to myself every day is to save whatever energy I have to take a shower (with quite a creative set up to accomplish this on my own), to dress and to put on a face. Not a lot of make-up, but just enough to add healthy looking colour to the sallow pallor that presents itself on my freshly scrubbed face. Then a rest of some length to recover from that process.

This daily ritual makes me feel better. If it’s all that I’m able to accomplish in a day, so be it. But being clean, dressed and made-up isn’t doing me any favours in helping others understand how the inside of me is being eaten away by this disease. But as a friend and I laughed about last night, is it any easier to be told that I look terrible?