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I am a positive person. I love life. I consider myself extraordinarily blessed, deeply grateful for what I have, and excited by the things I can still enjoy and look forward to.
I have a wonderful family, a faith that sustains me, friends I cherish, and a continuing sense of meaning and purpose. I laugh, learn, write, watch sport, and enjoy the countless little things that make life worth living.
I genuinely want more of life, not less.
None of that has changed because I have Progressive Supranuclear Palsy (PSP).
What has changed is what I have to deal with every day.
Recently, chronic stomach problems have caused enormous pain and discomfort. My writing has reflected that, just as it reflects the many other difficult symptoms of PSP.
Some of it makes for pretty grim reading.
But there is a fundamental distinction.
My symptoms describe what is happening to me. My attitude describes how I approach living with it.
They are not the same thing.
If positivity means dancing around, shouting about how wonderful life is, perhaps releasing a single and putting on a pantomime for the holiday season, then I am afraid I won’t qualify.
I am 51, in a wheelchair, living with a progressive, terminal neurological illness, and dealing with a body that increasingly refuses to cooperate.
Come on.
But positivity doesn’t mean pretending everything is wonderful. It means recognising how much remains wonderful, even when some things are very far from it.
PSP is a horrible illness. I write about choking, constipation, losing abilities, powering down, my eyes refusing to cooperate, and the uncertainty of what lies ahead.
These are descriptions of my symptoms, not declarations of my outlook on life.
I can be deeply unhappy about what PSP is doing to me while remaining deeply grateful for the life I have.
There is also a difference between how I feel and how I appear.
PSP affects my facial muscles, movements, eyes, speech, and sometimes my ability to respond. I can look miserable when I am not. I can appear disengaged when I am fully engaged. I can sit quietly, apparently expressionless, while thoroughly enjoying myself.
Increasingly, my face does not tell you what I am feeling. I recently had a Zoom session with my therapist and could see myself on the screen. At one point, I was smiling inside, but my face remained completely rigid. My mouth simply couldn’t produce the smile I was feeling.
The same is true of my writing. Some articles are joyful, some funny, some reflective, and others frankly grim. All come from the same person, with the same gratitude, values, and love of life.
Recently, I have sensed that some people may perceive me as having become more negative. Perhaps that is understandable, given the subjects I have been writing about and the changes in my physical appearance.
But my symptoms have worsened. My attitude towards life has not.
Indeed, in some ways, my appreciation of life has grown stronger. As have my faith and my love for my family.
Of course, I have bad days. I get angry, frightened, frustrated, and exhausted. That is part of being human, especially when living with PSP.
I will continue to write honestly about PSP, including its most difficult aspects, because I believe that doing so matters.
And I will continue to enjoy life because, despite everything, there is still so much to enjoy.
My suffering is real. My gratitude is real. My positivity is real.
One does not cancel out the others.
And I intend to enjoy as much of this wonderful life as I possibly can.
