The Only Way Is Up

I don’t mean this literally, but it is the attitude I choose to embrace when my emotions let me. Reinforcement matters, especially as the disease progresses. Some messages are worth repeating.

I had a standard check-in with my neurologist this morning, though I was not feeling great going in. The headline is simple: no new news. We discussed the earlier concern about a TIA and agreed it looks unlikely. Whatever happened was probably secondary to the PSP itself.

After a lot of thought I have simply decided the following. There are moments when you simply don’t have all the answers and you have to decide how to interpret what little you do know. My case is atypical. The core signs of PSP are clear and very evident, but alongside them a cluster of features don’t fit the standard pattern (I am not alone). No clear precedent. Without all the facts, I could take that uncertainty in the darkest direction. Most of the time, I choose not to. If there is no clear precedent for what I have, there is no fixed trajectory either. I do not have to inherit someone else’s timeline or someone else’s outcome. I will myself forward and do my best to stay as healthy and as happy as I can, for as long as I can.

Easier said than done. It requires a lot of willpower. But it seems the only real course of action available to me.

Over the past few days I have had time with oldest and dearest friends, and in general it has been truly special. There were weak moments, and I don’t think anyone was fooling anyone. But we had a genuinely good time. It transported me back to old days and was a lovely interlude.

Today also had its dark comedy, and it was genuinely funny. For part of the journey to the hospital, I was locked in a world of pain and hypersensitivity. Even through sunglasses and a cap, the light was bothering me. Every small noise sent chills through me. My knees ached. I was not good company. My sister was driving.

She became so hyper-aware of my discomfort that she was scared to use the indicator. She braked hard once and immediately knew from my face what it had done to my knee. It was, she later said, the most stressful drive she can remember. When I finally came out of the fog, we laughed. Really laughed.

What happened next was even funnier. My mouth muscles locked into a grin worthy of the Joker. Genuinely unpleasant. Also genuinely hilarious.

I don’t have all the answers after this morning’s appointment. But I am still here, still pushing, still trying to make the most of whatever quality of life I can hold onto, for as long as I can hold onto it.

I have no other choice. As Yazz sang in 1988, the song I found myself listening to this afternoon: the only way is up.