Time to decide what matters…

Life used to feel like a luxury liner – so many choices, so many options, so many things to do. Sadly, for much of that time, I wasn’t looking at the beautiful sights but had my nose buried in a computer or a phone. That chapter is behind me now. Thanks to PSP.

I raised a beautiful family, traveled the world, drove fast cars, and worked like a dog for far too long. I had options and possibilities. Within the bounds of kashrut (kosher food), I could eat what I wanted, when I wanted.

Now, I’m on a lifeboat, carrying only the bare minimum, heading into turbulent, uncharted waters. My options have narrowed considerably – even down to what I can eat and drink. I’m one step away from a feeding tube (some say I’m already there) and one step away from a fall that could be fatal.

It’s hard – emotionally and physically. The renovation isn’t complete, so I’m still using the stairs. This morning, as has happened before, I didn’t just freeze – I ground to a halt. The battery ran out. My vision blurred, my eyes closed, and I couldn’t move. I slumped on the stairs – luckily with control – onto a large step where the stairs turn at 90 degrees. Sliding down gracefully on my backside, I realized how lucky I was.

And then I reminded myself, as if I needed to, that everything I truly want is right in front of me: my family and friends. Life has slimmed down in choices, but I’m okay with that. I have the right choices.

I’ve worked hard investing in what matters all my life, and now it’s time to cash in. I’ve been blessed in the fifty years I’ve had, and now I want to enjoy the fruits – watch them grow – and have as much humor and fun in the process as possible.

It’s about what matters now.

It’s time to play a defensive game and take every precaution to slow the progression of PSP. There are still choices – I’m not giving up. For now, a feeding tube would compromise my quality of life too much, but I know the day will come when the trade-off is necessary. The lifeboat will narrow, but I’ll cling to what matters.

Physically, it means moving downstairs as soon as the fitted accommodation is ready, resting, and eating and drinking with extreme care. It may not have the allure of fine dining, and my favorites – crispy French bread and crunchy grapes – may be gone, but priorities matter. What counts is what I have in the lifeboat.

There are moments I get frustrated that other people’s lives carry on as before, but it doesn’t help. The other day, I was in a funk: “I’m all alone, everyone’s busy, no one has time for me…” It was pitiful, but I forced myself out of it by making a smoothie. I’ve learned that not forcing myself to snap out of it is a recipe for disaster – oddly, when people tell me to snap out of it, my defensiveness kicks in and I dig deeper. Stupid, I know.

I understand why so many people with PSP experience depression – around 60%, compared to 10% typically. It’s obvious. And yet, statistically, most don’t. I totally empathize.

Three ways I’ll do my best to avoid it:

• Spiritual: By knowing this is G‑d’s plan – even though I don’t know why – I accept it for what it is. I truly believe that, though it hasn’t stopped the occasional funk. I wish I were at the level where it did.
• Emotional: I need to avoid looking back at what could have been and focus on enjoying the now – taking every moment of humor and happiness that exists in this small ship. I still have skills, and I need to use them to keep my brain engaged: music, writing, learning, chess, a little work, and yes – even audiobooks.
• Physical: Keep exercising and doing yoga, but take every precaution as if my life depends on it. That doesn’t mean being housebound – I want to walk by the sea and get fresh air – but my window of risk must shrink.

I have to move from attack to defense and prioritize what truly matters.

Change at such a rapid pace is hard – but not as hard as I thought. I truly thought giving up the basics of good food would be unbearable, but in the scheme of things, it isn’t – just don’t wave a rib-eye in front of me. Or a piece of fruit.

For people with PSP: It seems to me that you have to get over this hump and be happy nonetheless. Meaning still matters. And right now, I truly have it. Honestly, in many ways, I have more clarity and calmness of thought than ever before. It will get harder and I am aware of that but I hope to carry with me the same attitude.

I appreciate feedback and your ideas – they give me the chance to discuss, share, and learn. So please, feed me your thoughts.
Have a good week, all.