This past Thursday evening was the last free concert-on-the-bay of the season. Jack and I attended all but one of these events. There were a slew of logistical challenges when he moved from the walker to the wheelchair. A lift had to be attached to our car, straps located to tie the wheelchair to the lift. My son is working on a deck so Jack no longer has to get out of the chair twice in order to get him down the steps and into the garage from the house. We now have poles attached floor-to-ceiling in the living room and Jack’s bedroom to help him to pull himself up from the wheelchair and into his lift-chair and his bed.
A lot of people dance at these concerts-by-the-bay. Some dancers are incredibly talented. Others move like uninhibited fools. Both groups are a joy to watch. Many couples, both young and old, do not dance, but sit and tap their feet or clap their hands as they enjoy the music. If I give in to my desire to dance, my back and hip scream for me to sit down and accept my limitations. If I persist, there is hell to pay for the following two or three weeks.
Since Jack is now getting around in a wheelchair, you might think we are a perfect match, the two of us sitting side-by-side, holding hands and swaying to the music. This is not the case. Jack insists on dancing. Because he has balance issues he tends to fall backward. When he pushes himself up out of the chair and begins to bounce and move, I know he is in danger of falling if he doesn’t have something, or in this case, someone to hold onto.
In fact, he says himself, after each and every dance, “Boy you saved my butt four or five times. I’d have fallen if you hadn’t steadied me.”
When my back simply will not allow me to dance with him, he scoots around in his wheelchair and asks other women to dance, or sidles up to them on the dance floor, rises from his chair, and sways until they reach out to provide him with balance.
This last Thursday, feeling overwhelmed with the logistics of getting him there with the wheelchair, I plopped myself on a bench and studied the dozens of couples sitting together and enjoying the music and the crowd. Some held hands, some talked quietly between songs, one couple threw popcorn to a curious harbor seal. All of them, it seemed to me, experienced the evening together.
I, on the other hand, sat alone while Jack scooted himself to the dance floor, struggled to push himself up out of his wheelchair and then did his version of dancing. People either moved out of his way or approached and offered help, which if they were female, he happily accepted. But he didn’t want help to get back to his wheelchair, oh no, certainly not, he wanted them to provide ballast so he could dance.
I admit, sitting there in a cold mist from off the bay, there was some self-pity going on in my heart-of-hearts. On the way home, after the loading and strapping down of the wheelchair, I asked, “Why couldn’t you just sit with me and enjoy the music from your chair since you knew my back was really bad tonight? Be an adult for once?”
“I just can’t.” He grinned. “I’m a child. Never going to be able to listen to music and not dance. Never, ever, going to be an adult.”
The following night we had friends over for carnitas and margaritas. I had a wonderful time visiting. After dinner Jack insisted on cranking up the karaoke machine. Sometime after the third drink Jack pulled himself up out of his wheelchair using his new pole and began to entertain us with what can only be described as the world’s worst pole dance. Ever. The only thing missing was a thong.
There he was, half lit, unsteady to begin with, gyrating on a pole.
I could only laugh and hug the man. Because you see, while Jack’s inability to be an adult, to accept his limitations, is one of the most frustrating things for me to deal with as this disease progresses, it’s also the reason he’s still alive. He does not give up. Not ever. And, while I would have preferred to spend what may well turn out to be the last concert-by-the-bay we ever attend together, being, well, actually together, that is simply not who Jack is.
Jack is never going to be the guy I sit beside and enjoy a quiet moment.
He’s always going to be the guy wiggling his hips on the geriatric stripper pole.