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I just had a strawberry yoghurt, I’m drinking an espresso, and I’m writing this blog. I feel good. Life is good.
“Life is good.”
That is completely ridiculous.
I woke up unable to see because both eyes were almost completely glued shut with the now familiar mixture of goo and crust that PSP seems determined to produce overnight. It took several minutes before I could clean them well enough to open them. Only then could I transfer into my wheelchair, a process that often requires help from my wife or my carer. When I stubbornly decide I can still manage on my own, it occasionally ends with me on the floor. Only then could I make my way to the bathroom, built for full disabled access, and begin the daily routine.
Fifteen or so tablets. Reflux. Nerve pain. Anxiety. Urinary problems. All of this whilst wearing rose-tinted glasses to reduce the light sensitivity that never completely disappears.
By the time most people are finishing breakfast, I’ve already negotiated a morning that would once have seemed unimaginable. The only difference is that it’s about 3:45 a.m., which, for me, counts as a good night’s sleep. PSP has robbed me of the ability to sleep properly.
The rest of my day is unlikely to be much different. I’ll move between the bedroom, the bathroom and the lounge, all downstairs because stairs are no longer an option. I don’t even know what upstairs looks like anymore. My wife has been making changes to the bedrooms. I have no idea what they look like because that part of the house is simply out of bounds to me.
My live-in carer will be nearby, helping me avoid falls and assisting with the countless tasks I once performed without a second thought. I wear incontinence products. I use a wheelchair. I need help getting dressed and going to the toilet. Even meals have changed beyond recognition. Most of what I eat bears little resemblance to what most people would call food.
None of that is remotely normal. Nor is it what most people would call a good life.
Neither is it the life I spent almost thirty years working towards.
I worked incredibly hard, and I really do mean incredibly hard. I imagined travelling with my wife, taking more holidays, spending time with our children and, G-d willing, one day our grandchildren, driving wherever the road took us, and finally slowing down after decades of running at full speed.
Instead, I’m largely housebound. My biggest journey today will probably be from one room to another, apart from my trip to the physiotherapist, where I’ll be pushed in my wheelchair wearing a double blindfold simply to stop the light from hurting my eyes.
PSP is a progressive disease. I know what the medical literature says. I know the direction this illness travels, even if none of us knows exactly how quickly. I understand that my future will almost certainly contain greater disability than my present. I also know that, statistically, my future is likely to be measured in just a few years at most, although none of us knows exactly how long.
Harder still is watching the people I love make this journey alongside me. I see the sadness in their eyes. I know this disease hurts them almost as much as it hurts me.
And yet I still laugh, not because any of this is funny, but because life still is. I laugh over a game of chess, whether I win or lose. I enjoy watching a film with my carer. The best bit today was the playful debate I had with my youngest daughter, who starts work at five o’clock, over who was going to make the coffee. I lost, and I found myself smiling.
And that’s when it hit me.
I could talk at length about faith, acceptance and learning to play the hand I’ve been dealt, but that isn’t really the answer. The answer is much simpler. I love my wife. I love my children, who, thank G-d, are growing into wonderful adults. I love my close family and friends. My world has become much smaller, but it is still full of the people who matter most, and that is enough to make me genuinely happy.
Yes, I would have chosen a different future. PSP and a shortened life expectancy were certainly never part of the plan. But none of us is promised the future we imagine. What I do know is that I can look at the next generation of my family with enormous pride, and that even now, dictating words I can no longer easily type, I am still able to do some good and reach people I will never meet. For that, I am deeply grateful.
The strawberry yoghurt and the espresso aren’t the reason life is good. They are simply reminders that, despite everything, I still have the capacity to enjoy ordinary moments. That comes from the people I love, from gratitude for what remains, and from my faith that G-d has not abandoned me.
I have every right to complain, and I don’t judge anyone who does. But, for me, right now, life is good.
