That I’m writing this with a positive tone says everything about my first day using a wheelchair, and the fact it was probably overdue.
But It wasn’t easy. I chose to rent one in the morning, it felt better than buying outright, and then went to a wedding using it. I nearly backed out twice from embarrassment and self-consciousness. But thanks to my friends, and especially my amazing wife, I made it.
Three unexpected benefits came with using the chair. First, I genuinely enjoyed the event with a real sense of liberation, happiness, and independence. Second, I avoided any dreaded incidents like a fall or choking, which was a huge relief. And third, I realized just how unsafe, slow, and attention-seeking my loud shuffle with the walker would have been, the difference was stark and undeniable.
In line with a friend’s advice, I didn’t feel more disabled or invalidated in the chair than I did using the walker. In fact, compared to a regular wheelchair (which might be my Shabbat option, TBD), this was a much better experience. And I didn’t knock anyone over… at least not that I know of!
Most importantly, I didn’t leave the wedding exhausted or ashamed, as I have in the past, whether from a fall, choking, or drawing unwanted attention. I didn’t steal focus from the celebration, which was my worst fear. Instead, I was able to truly enjoy the wedding, stay present, and leave feeling happy that I had genuinely participated..
When people have asked to pray for me, I’ve always said that my quality of life is just as important as the quantity. The fact that I get to take part in weddings, have meaning by telling my journey, and have the kind of family and friends I do, fills me with real positivity. That’s what makes the difference. It is, for me, the definition of quality of life.
I’m grateful to the groom’s parents for their thoughtfulness and care. I learned I couldn’t do gravel tracks, so I stayed at the back, just one of a million lessons. My friends magicked a ramp out of nowhere, I owe you so much. Those who treated me like a person made a real difference. And my wife, who was by my side the entire time and aced the drive, I love you, honey.
The shift in perspective was surreal. I’ve always been one of the tallest at weddings (6’4″), and now I was one of the shortest. With PSP affecting my vertical gaze, my neck was stiff. To the person who came and sat with me, thank you. I now understand what my friends and family have done for decades to talk to me. A taste of my own medicine.
This chair won’t define me. I’ll still use the walker or cane at home when I can. But having some independence again is a huge relief. Tomorrow, I’ve got a Accupuncture session across town becuase of course my knees are seriously hurting from all the low sitting (I am adding an extra cushion), but I can drive there. The chair has a 5km range!
I remain grateful to G-d for every chance to live, not just as someone with PSP, but as a person. I couldn’t attend the wedding of a dear friend’s daughter in LA. Travel is likely off the table for good, given my decline. But he sent me the most beautiful message. I was there in spirit.
I dedicate this post to all those facing illness, friends, family, and especially the kids of friends. One of my trainer’s brothers is battling cancer. I asked for his name, and we joked I might not be the best person to ask G-d for healing. But for those who can add a prayer: Aviv Ben Gila Yehudit.
