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When I was first diagnosed with PSP six years ago, I made a decision about how I wanted to face whatever lay ahead.
I wanted to stay positive. To appreciate what I had rather than constantly mourn what I was losing.
Looking back over this blog, one thread runs through it from the very first post to today: contentment, gratitude, relatively little anger, and hope.
Not hope that PSP will get better. I know what this disease does, and I have written very openly about what it is taking from me. But hope that I can keep finding happiness, meaning, and purpose in the life I still have.
And it has taken a great deal.
I have lived with nerve pain. I have dealt with severe constipation. I have moved from walking to using a wheelchair. I have lost a career I loved and worked hard to build. I now wear a diaper. I have a live-in carer and live downstairs.
I don’t write that list for sympathy. I write it because it is the honest test of everything I said at the beginning. It is easy to be positive when the losses are still theoretical. It is harder when they are your daily reality.
This wasn’t something I wrote in an optimistic moment early on and then quietly abandoned as things became harder.
It is still how I live.
Not because I never get angry or miserable. I do. Sometimes very much so. And certainly not because I think my response is better than anyone else’s.
But because, through all of it, I have held on to who I am.
My circumstances have changed beyond recognition. My outlook on life has not.
I don’t know whether I will always be able to keep it. I hope I can. I pray I will.
But six years in, the answer hasn’t changed. And I think I am entitled to take a little pride in having come this far with that part of myself still intact.
