When I asked my husband recently how he would describe me, the first word he said was, “fearless”. This is what I have to remember: who I was before this illness. I don’t want to scare anyone by being honest in this blog. There are moments when I am completely overwhelmed with fear and there are moments when I deeply grieve and I will write about those times… It is helping me to articulate my feelings here the way writing poetry once did. But, those moments are not constant- not even daily. Mostly, I am trying to get stronger, trying to allow joy and laughter in, trying to do some house chores and some correspondence and plenty of meditation breaks. In a lot of ways, I am grateful for my perfectionist tendencies and my addiction to thoroughness and research – it is a thirst for knowledge, a desire to do things as well as I can, to be as informed as possible. My goal is not to change that part of me, but to get to a place where I’m the old me in this new life. The me that is fearless and feels she can come through anything. I’ve just had the wind knocked out of my sails, that’s all. Had my bubble burst. Had my parade rained on. And those emotions only overflow when my physical symptoms get worse, so, with symptom-management, there should be emotional stability.

Every day, I honour the parts of my body that are working and feel good. I am very grateful that my body- my oldest friend- has been through so much and keeps on going. And I’m very grateful that my mind never stops- even though it keeps me up at night and runs a little rampant, it is still sharp and doing its job.