Yesterday, I learned something new, and it was not pleasant.
It began with a torn shoelace, which meant, of course, that I would have to replace it. I was lucky; I had a pair of spare laces in the closet. But for some strange reason, the new laces did not fit through the holes. The original laces were rounded while these were not, so I assumed that that must be the problem. I asked one of my grandchildren to run across the street to buy me thin, spaghetti-like, laces that would fit done the holes. Instead, he took the laces that I thought were too big to fit into the holes and, within less than a minute, the laces were threaded through the holes and my shoes were ready to wear.
That’s when it dawned on me. The problem was me, and not the laces.
I know that Parkinson effects fine motor skills, but because the changes are gradual, I didn’t realize just how much. Yes, I make a lot more typing mistakes than I used to, and yes, it takes me longer to get dressed in the morning, but still, the shoelace incident was a not so pleasant revelation.
The day after I discovered the extent of my lack of dexterity I attended my Parkinson rehabilitation group. After we finished doing hand exercises with a special claylike material, Ayala, our wonderful occupational therapist, handed out sewing cards and laces, and instructed us to put the laces through the holes. Almost all of us had difficulty with this task.
Ayala explained that as we grow older, tasks involving fine motor skills become more difficult. That is true for everyone, and even more so for people with Parkinson, as Parkinson speeds up the normal degenerative process, in other words, aging.
All of that is absolutely fascinating, at least on an intellectual level, when the process refers to someone other than myself. But when it translates into ME losing these capabilities, it’s hit a bit too close to home for comfort. I like myself just the way I am, thank you very much. No changes (at least of those kind), please.
That afternoon I had my semi-annual appointment with the neurologist at Hadassah. Of course he told me that I was doing great, but he also instructed me to graduate from a cane to two walking poles (all the better to walk, my dear), and upped my medicines. And that didn’t sound so great to me.
I work so hard to keep the status quo, but I don’t always succeed. It’s as though I am racing up the down escalator.
Racing up the down escalator has caused my life to become extraordinarily busy; and sometimes, I feel that it’s a bit too busy for comfort. Tikvah for Parkinson, the organization that I opened to help people with Parkinson in Jerusalem, has grown at a dizzying rate. It seems as though the moment we open a new program, there’s need for another one. And as crazy as this might sound, although I opened these programs so that I could get the therapy I need, instead of participating in the program, I am constantly called out to take care of various emergencies.
It’s really a paradox. I truly and honestly believe that a person with Parkinson must make his health a top priority. And yet, I was so busy helping other people with Parkinson, that I lost my sense of priority. Forgot to take care of myself. I created a whole program to help people with Parkinson, myself included, yet I was rarely able to enjoy the fruits of my labor.
Did you notice that I wrote the last paragraph in the past sense? That’s because, after my shoelace wakeup call, I decided to become nasty and mean, well, kind of… Chessed needs borders. I am learning to say no, to tell people that they are going to have to wait until I finish what I’m doing before I can speak with them, to carve out time for myself, so that I can continue to be myself.
We Jewish women are amazing jugglers. We spend our entire life multi-tasking, juggling our responsibilities to our families, to the communities, and to ourselves as we try to keep our priorities straight. And even as the number of flying balls become less, it’ remains an incredible balancing act.
At our Tikvah group, whenever Gili, our physiotherapist, challenges us with a difficult balancing exercise, she says, “You ladies are capable. You’re strong. You have so much hidden strength. I know that you can do it.”
And she’s right. We do, and we can.