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Today I received one of the most important emails I have had in a long time.
It came from someone who follows my writing about living with Progressive Supranuclear Palsy (PSP). The email affected me enough that I asked whether I could quote part of it anonymously. She very kindly agreed. She gave her blessing to publish this blog after I showed her the full draft.
I found it difficult to read. Not because it told me anything I did not already know, but because it described a version of reality that may one day become my own.
They wrote:
“I’m a carer for my husband with PSP. He started his journey back in 2017, and though he struggles to communicate, is totally reliant on a wheelchair and ceiling hoists to mobilise, doubly incontinent, he is still, with care, able to eat and drink and has morphine patches which to date keep him pain free. We make the best of the better days, which unfortunately seem to be on the decline.
Like you, I am a monitor and despite having read everything about the disease and not fearful of death, I fear the unknown we have yet to face.”
Most people reading that would probably focus on the physical realities. I noticed them too. Anyone living with PSP would. They are not pleasant to think about, and I have no intention of pretending otherwise.
Two things stayed with me. The first was the final sentence.
“I fear the unknown we have yet to face.”
So, do I.
I have written before that I do not fear death nearly as much as I fear that uncertainty. I fear the things I have not yet experienced, the things I cannot predict and the chapters of this disease that have not yet been written.
Yet, hidden inside a sentence about fear, I found something I never expected. Hope.
This couple’s PSP journey began in 2017, several years before ours. Their fear was not about today. It was about tomorrow. That small distinction mattered enormously to me.
For a moment I imagined myself several years further into my own journey. What would I be thinking? What would I be worrying about? Surprisingly, perhaps not very differently from today.
The circumstances may change, but the emotional challenge appears remarkably similar. We are all trying to live with an uncertain future. The unknown has not disappeared. It has simply moved further down the road.
I found that unexpectedly comforting.
When you are diagnosed with a disease like PSP, it is easy to imagine that people further along the journey somehow possess answers that you do not. That eventually everything becomes clear. Perhaps it never does. Perhaps learning to live with uncertainty is simply part of living with the disease. The fear is never replaced by certainty. Strangely, I found that reassuring rather than frightening.
What struck me was that people nevertheless cope. Not perfectly, and certainly not without fear, but they cope. They adapt.
For all the scientific papers I have read, this one email taught me something they never could. Knowing that other families are facing the same uncertainty, carrying similar burdens and somehow continuing gives me hope.
Then there was something else that shone through every line of the email. Love and kindness.
This reader is caring for her husband through challenges that many people would find overwhelming. They make the best of the better days. They adapt. They persevere. They continue together.
The email also reminded me of something I already knew. PSP is never experienced by only one person. Every patient is surrounded by people who carry the disease in different ways. The physical burden may belong to the patient, but the emotional burden is often shared. Carers help, support, lift, encourage and love, often without recognition or complaint. Their journey deserves just as much acknowledgement as ours.
Perhaps this combined lesson is what I took from this email.
Fear does not disappear. Patients feel it. Carers feel it. Families feel it. What changes is not the existence of fear, but the strength of the love, kindness and determination that grows around it. People somehow learn to keep living alongside it.
In my experience to date, the fear is almost always greater than the reality.
Not because the reality is easy. It is not. But because reality arrives one day at a time, one challenge at a time, usually with people beside you helping you carry it.
Fear, by contrast, tries to make you carry everything at once. In reality it is broken down into smaller pieces.
My thanks to this anonymous reader are beyond words. Her email reminded me that each of us walks an individual path, our journeys are different, but the road often feels remarkably similar and none of us walks it entirely alone.
None of us knows what tomorrow will bring. Perhaps nobody ever does. But after reading that email, tomorrow feels just a little less lonely.
