Living with PSP can shrink your world—and everyone else’s—until it feels like the condition is the center of gravity. I’ve noticed this in myself, and honestly, it worries me. You start writing a blog, sharing your story, and before long, everything revolves around you. Even hitting “publish” on this post feels like feeding that cycle. But maybe acknowledging it is the first step.
Illness demands attention, but it can also pull loved ones too far into its orbit. Right now, our home is in upheaval because of renovations for my needs—a stark reminder that PSP affects everyone, not just me.
I’ve often written about caregivers remembering the person in the bed or wheelchair. But here’s the flip side: as a patient, I need to make room for others too. Especially those closest to me. I tell my kids often: your lives must keep moving forward. You have studies, jobs, dreams, and a lifetime ahead. I don’t want any of that parked for me. That’s not what a father works for. I want them to be better than me, to have great futures—not to hit pause because of PSP.
My wife, my primary caregiver, is 150% committed to my needs, and I’m deeply grateful—even if I don’t always show it. But I don’t want PSP to dominate every conversation, every decision. I know that’s a tall order, but I’m trying.
I want the same with friends and family. I want to talk about their challenges and celebrations, not just my issues. The other day, I gave a friend advice completely unrelated to PSP, and it felt amazing—a welcome break from my own reality.
I think I’m doing a reasonable job and my family are keeping me on the straight and narrow to a large extent, but the blog reminds me how easy it is to slip. In some ways, we all want our cake and to eat it too: to be cared for without impacting the lives of those we love. Reality doesn’t always allow that. So here’s what I remind myself:
Illness expands the void. I need to fight that temptation—for my benefit and for others. My late neurologist used to say about Parkinson’s: “Don’t let it be your life—let it be part of your life.” PSP makes that harder, but it’s just as important.
Even if I become uncommunicative, I want to make sure I never slip into “me first.” That’s my goal. It won’t be perfect, but I’ll keep trying. Professional care may help, and I’ve made sure my power of attorney knows my needs come second to my carer’s. PSP may dominate time and attention, but I don’t want it to dominate my intent or my passions. They are not PSP—and never will be.
Note – not to drag you further into the PSP vortex – I have updated the Intro to the site to give a clearer link to articles and a timeline of my story – Intro and Blog Guide
2 Responses
it is a tall order indeed – when I was in the midst of my cancer journey, I spent an inordinate amount of time each day talking about cancer and my illness. I don’t think a single day passed when cancer wasn’t mentioned. It does become all consuming – and to a certain extent that is normal and completely justified when you’re facing a very serious disease, a major challenge in your life and you yourself are consumed in coping with it, both physically and mentally.
I don’t have a silver bullet to offer here – it annoyed me when people (including a good friend who is a doctor) told me or my wife that I should try not to focus on my cancer all the time. At that time in my life, it was a very major part of every moment for me.
The only thing I could suggest is making a conscious decision during certain hours of the day to steer clear of the topic. It’s unrealistic to avoid the topic completely – in the same way the people around you are consumed by their daily challenges and activities (jobs, relationships, kids) and may speak about these things ad nauseum, you are entitled to speak about your greatest daily challenge (and indeed, it’s therapeutic!) – which happens to be PSP! But of course, it is not the only thing going on in your life so there are certainly other things to talk about!
Thank you Chaim