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I write these words as therapy, and to share what it feels like to live with PSP. But if I’m honest, it’s easier for me in some ways than it is for many of the people around me. My family, especially those closest to me – and my close friends carry a different burden. They worry about me, they hurt for me, they hurt for themselves and some are quietly scared about what the future will look like. Others worry about how they themselves will cope when things get harder, and even after I’m gone.
And then there are those who worry about the people who love me, because this illness doesn’t just touch me – it ripples through every life connected to mine.
Sometimes I make it look too simple, as if my attitude is everything. I tell myself I’ve got this, that positivity is the answer. But the truth is, it is more complex. This is an orchestra, and I would be foolish to think I’m the conductor. I have some influence, yes, but so much is beyond my control. People around me are impacted in ways I can’t fix, and that’s hard to accept. Why? Because at the end of the day, this is a terrible, terminal illness. And it’s happening to me at a young age—when I have a relatively young family, friends who are trying to live their own lives, which is hard enough without this added weight.
I wrote my book about my faith, and to be honest, my faith is strong – but I also acknowledge in the book that it has been built over years of self-development and by developing the muscle of resilience and stubbornness. Others don’t have that experience, so it is simply much harder for them. They are going through this at a younger and tougher time, and I don’t have many of the answers.
I feel so deeply for those I care about, and I will try to do my part to help us all through this but I am starting to learn that I can’t solve everyone’s challenges and that alongside what I need to do, I must give space for the feelings people have and allow but help each person to find their own ways to cope. For some, this may mean a process of denial before acceptance, for others it may mean backing away and for others it may mean something else. I have to learn that it can’t just be what I want the way I want it.
As the patient, I want different things at different times. In my low moments, I want attention – I want someone to look at me and say, “I see you.” After all, I am the patient – this is happening to me. But then there are times when I want to disappear into the background, to let the people I love breathe and live without my illness overshadowing everything and to not be a factor. The truth is, neither is possible. We are family, we are friends, we are a community – and we need each other, whether we like it or not.
So, every time I say, “I think I’ve got it,” I need to remind myself that I don’t speak for everyone who is hurting because of this. I am deeply sorry for the pain they are going through. I wish it weren’t happening. I can’t change that reality, but I can try to be the most positive and healthy version of myself – and maybe that will make some difference.
At this holiday time of year, I hope we can look at each other as a team. I need to learn to give care and sometimes space to those who need care. Yes, I am the patient, but I am only one of many people affected by this disease. I need to remember that. And so, as we step into a new year, I wish everyone strength, hope, and faith—the kind I wrote about in my book. Faith to dig deep, whether you are the patient or someone walking alongside one.
