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Wednesday, February 15, 2017

Becoming an Activist Binah Feb 15, 2017

Recently I found myself propelled into the role of an activist. No, I’m not leading protests or picketing my local grocery store. Instead, I’m trying to change the reality for people living with Parkinson in Jerusalem.

As anyone who’s been following my articles in the Binah knows, I have Parkinson, and it is crucial for a person with Parkinson to exercise regularly. But the problem is that in Jerusalem there is a real lack of activities appropriate for people like me. So I decided to change that. After all, since I need this for me health, I’m going to make sure that I have it, even if it means creating it myself.

My first step was to speak to the medical askanim in our community to get an idea of the number of other people who might want to participate. They told me that many people in our community view Parkinson as something to be ashamed of, and are petrified afraid that people might discover that they have this “dreaded condition.” They remain closed up in their homes, with almost no physical activity, and as a result their muscles soon become stiff and stop working. The askanim pointed out that the first step to convincing people to participate in exercise and physiotherapy groups was to break the stigma surrounding the disease and raise awareness about the importance of physical activity for staying healthy. Only afterwards would it be possible to set up the actual programs. “It’s literally a matter of pikuach nefesh,” they added.

That’s the reason I decided to make an informational evening about Parkinson for the community. No, not for people with Parkinson (after all, if they are afraid that someone might discover they have the dreaded disease, they certainly will not go to an evening just for Parkinson patients) but for anyone with a friend or relative (and yes, we are related to ourselves) challenged with Parkinson.

So that’s how I ended up convincing the local community center to donate a hall, as well as arranging for three very chashuva and well known rabbonim (and excellent speakers) as well as one of the world’s top Parkinson specialists, to donate their time to speak to whoever might show up. And to tell you the truth, I really didn’t expect a crowd. People with much more experience than myself had warned me that I’d be lucky if thirty people showed up. The medical askanim pointed out that the numbers really didn’t matter, because all the people who were afraid to come lest someone might see them there, would somehow find a way to hear what happened. “And don’t forget to record it,” they added.

A few hours before the event, my grandchildren and I got to work setting up the hall for one hundred people, even though one of the rabbonim had pointed out that, “Nothing looks worse than a hall full of empty chairs.” Since the hall is difficult to find, the children made colorful signs with arrows to point out the way. My children and grandchildren schlepped tables and my son set up the mechitza. We even placed individual bottles of water on each chair to add a touch of class.

Well, to make a long story short, by the time doors were officially opened, there was a line of people waiting to come in! The one hundred chairs that we had so optimistically put out were soon filled, so my grandchildren scrambled to add more, and my son schlepped out additional panels to lengthen the mechitzah! In the end, although we put out 250 chairs, half a dozen people ended up standing in the back. Although I’m far from being a teenage, I am not exaggerating when I say that it was absolutely awesome.

Anyway, that evening was just the beginning, and now I am head of an organization to help frum people with Parkinson in Jerusalem. It’s been a whirlwind of meetings, phone calls, and plenty of surprises. Our organization, which is still not official, but soon will be, has been featured in local newspapers, and I’ve even been invited to give a presentation about the difficulties faced by the religious Parkinson patients to a board of doctors and government representatives. Oh, and yes, we’ve started support groups, as well as an evening program for the men and a morning program for the women!

In a way, I feel like a teenager, trying to find herself in her new role. It’s a blend of the new and the old, so I bake chocolate chip cookies to serve to the representatives of a drug company, and quickly get out of my robe and tichel before the neurosurgeon arrives to meet with me about how his department can assist us.

Life is full of surprises, and sometimes challenges can lead to new pathways. I don’t know where this path will lead me, but one thing I can tell you, I’m sure havin’ a lot of fun!  And who knows, perhaps by the time I turn 120 I will have figured out what I want to do when I grow up. 

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