Proof That I Can Win

Yesterday was cast iron, gold-plated proof that I can win my battle with PSP. I know that sounds outrageous, but hear me out.

The physical battle against PSP I am almost certain to lose – it will almost certainly claim me as a cruel victim. But last night proved I can win when I measure success according to the five goals I set for myself (see link).

I didn’t set time-bound goals like making it to my eldest daughter’s wedding in March because I don’t want to limit myself. I want to be at all my kids’ weddings. I also don’t want to measure success by a factor I can’t control – time. I want to make the most of as much time as I can. The timing I leave to Him above, but I will do my best.

We had a very special family event last night, which it was my absolute pleasure to host with my wife and another wonderful family. It’s true that I couldn’t eat the food (friends and family made arrangements for me). I couldn’t dance either – though I’m not a dancer anyway, as my friends will testify – but I did some twirls in my wheelchair with my son and daughter. I was in agony at the end from five hours in a wheelchair, my eyes blurred and seeing stars, and I admit that at one point I almost passed out were it not for the fact I was sitting down. Lastly, I admit to one bittersweet moment when I saw my three kids dancing with my wife with such joy. But perhaps especially for that moment, I am the happiest person alive. Truly.

The evening was not dominated by PSP. It was not about PSP. People came and, I think, enjoyed themselves celebrating with us (I wish I could have invited everyone I know and everyone who has been so amazing in their support to us but it was simply not possible). PSP was not the star of the show. It had to take a back seat. In fact, at one point it took to being driven when my nephew had the best time sitting on my knees trying to drive me into the grass and mud outside the location. It was simply special, and this morning I reflected on the goals I had set.

Faith, Family First, Positivity and Joy, Dignity, and Purpose. I aced them all, in spades.

I will continue to do what I can to keep going. Sure, it will get harder and harder, and I will have to make more and more compromises on the health side. There will come a time when I am unable to attend such a gathering, but that happens to all of us at some point, and I will always have the memory of last night.

I proved to myself that while PSP will claim me eventually, possibly soon, I was proved 100% right that I can and will win – thanks to the amazing support group I have, thanks to the strength I take from my wider friends and family and now many people worldwide who have reached out to me because of my writing, and thanks to God. And I will add, possibly for the first time, a self-admission that there is a part of me that is a little proud of myself this morning for fighting PSP with a positive attitude (most of the time), but I don’t like self-congratulations so I will not say it again.

It truly is not about time. It is about seeing my goals achieved for as long as I am allowed, and I am going to push very hard on that front – but I can’t do more than that. One Olympic champion once said that to win the 100 meters, you have to race to the 110-meter line – you have to go through the finish at full speed. That’s exactly how I feel: I’m not stopping at some arbitrary finish line; I will keep pushing beyond it for as long as I can, and I will try to continue to keep adjusting as I go.

If someone had told me I would enjoy myself at such an event in a wheelchair, in pain, and eating the most limiting of food, I would have NEVER believed it – but I now have proof.