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. 

Adventures with my Blank Screen Binah 519

A few days ago when I reviewed my calendar, I noticed that my monthly Binah article was due at the beginning of the coming week. Since I am never one to leave anything to the last moment (at least not by choice. As I’ve learned over the years, we are not in charge…), I spent an entire afternoon at my computer, composing the article..  It was magnificent, a real masterpiece, which made sense because I'd had lots of inspiration. Earlier that morning, my grandson came from Beit Shemesh to Yerushalayim to lay tefillin for the first time. He had come for the tremendous zechus of having Rav Yitzchak Tuvia Weiss, shlita, Gaavad of Yerushalayim, place the tefillin on his arm and head. Following Shacharis, my grandson and son-in-law celebrated this important milestone with a l’chaim in our living room followed by a festive breakfast. I had to hold myself back from pinching the almost bar mitzvah bachur’s sweet, apple-pink cheeks (ah, those dimples…). He appeared so grownup in his new suit, with the slightly too-large hat perched incongruously on his head.

The article was beautiful, nostalgic, filled with warmth combined with a deep and meaningful message. But it wasn’t meant to be. It disappeared from my computer. Completely. That’s right, for some reason it ceased to exist, not on computer, not on my backup; it just disappeared into nothingness. Poof!  I spent close to an hour using advanced search options in a vain attempt to track it down until finally, I came to the conclusion that the article was somewhere in cyberspace, and that instead of wasting my time crying over something that was not meant to be,  I should write a new one. Considering my computer’s whimsical sense of humor, it will most probably magically reappear on the very day that I decide to retire from writing forever.

I was stuck. Not only was I stuck without an article, but I couldn’t even remember what profound message I had hoped to convey. Since I had worked up a good sweat and it was almost time to go to bed (and I was beyond frustrated and couldn’t bear looking at the blank word document taunting me beyond belief), I went to wash up. And that’s when, with the steamy water cascading from the faucet and fogging up the bathroom, I came up with a whole new article, even better than the first, from an incredible catch-your-imagination opening to a meaningful hold-back-the-tears ending. I had no doubt that it was a real winner, but first I had to set it to paper before I’d forget my newest masterpiece (When will someone create a keyboard that is waterproof?). So I rushed out of the bathroom, soap hopefully all rinsed off, and sat down at the computer.

That’s where I am now. And once again, blank. I can’t remember what I wanted to write. Just a few moments ago, it was clear and organized in my mind, but now it’s disappeared. Completely. Poof!

As my kids would say (they’re Israeli), "OOOooofffff!"

My mind is like my computer. If a thought is not properly saved before being pushed off the screen, it is lost, gone forever. Irretrievable.

Erev Shabbos my granddaughter and I were sitting at the kitchen table, composing the shopping list, when, just as I was about to add another item to the list, she recited a loud bracha and waited expectantly for me to answer “Amen.” My train of thought was interrupted, and to tell you the truth, I still have no idea what it was that I had wanted her to buy.  But whatever it was, it obviously was not that terribly important, because we had a beautiful Shabbos without it.

From what I’ve heard from other women in my age group, forgetting is a normal part of the aging process. But it also has a silver lining, because for the most part, the things forgotten are really not that important. I might forget what I wanted to put on that shopping list or the name of some acquaintance that I barely know, but that gives me more room in my overcrowded brain to remember the people I love and the things that I really want to do. I might forget the reason, or even existence, of old hurts and grudges — and that, of course, makes it easier to forgive and move on.

And although I might forget the words I wrote, I most certainly won’t forget the lesson I learned: Important things must be properly saved.  

LEAVING MY COMFORT ZONE Binah

It’s challenging to be a bubby. For those of us blessed with a large family who in turn are themselves blessed with large families, we are often forced to decide how to divide our very limited time and resources among our growing tribe. And when we are bubbies challenged with a chronic illness, well, those decisions become even more difficult. I host my children often, and I love taking my grandchildren on outings, but I also pay the price. The nachas leaves me both invigorated and exhausted — invigorated with a combination of gratitude and pleasure, exhausted from the physical exertion combined with the sheer noise level of being involved with so many little, and big, people.

I took my exhaustion to a new, unprecedented, level and traveled halfway across the world, from my home in Yerushalayim to Portland, Oregon, where I attended the World Parkinson’s Congress, a four-day learning experience for medical professionals, paramedical professionals, Parkinson’s researchers and plain, old ordinary people with Parkinson’s. Although I was the grateful recipient of a grant that covered most of my expenses, the decision to make this journey was not an easy one. The congress concluded less than a week and a half before Rosh Hashanah, which meant that after traveling for close to twenty-four hours, I returned home and literally plunged headfirst into my erev Yom Tov preparations.

Yes, the trip was exhausting, and jet lag made it difficult to fully take advantage of everything that was offered during the four days that I was there (I had a tendency to doze off at the lectures). And of course, returning home so close to Rosh Hashanah was far from ideal. Yet, despite the fact that it took me close to a month to finally return to normal, I am glad I went, and would do it again if I had the opportunity.

Think back to when you had your first baby, and how you loved connecting with other new mothers. They, too, were juggling a whole slew of new roles while attempting to remain rational, balanced human beings. They, too, struggled with nights that seemed to begin at dawn, and tried to keep to a schedule that can only be described as a consistent variable. In their company you felt understood and validated.

That’s how it is with Parkinson’s. There’s a part of me that no one, except other people with Parkinson’s, can understand. During the four days that I spent at the World Parkinson Congress, I met dozens of people from throughout the world determined to live a rich, full life, despite their Parkinson’s. I was motivated by their enthusiasm, and learned from their experience.

Thanks to Sparks of Life, a Lakewood based organization devoted to helping Orthodox Jews living with Parkinson’s, I enjoyed glatt kosher meals and was able to connect with other frum people sharing the same challenge. Yes, the lectures and workshops were both enlightening and fascinating, and I even learned a few interesting tips, but what I really found exhilarating was being together with others who truly understand that unique part of me, even though it left me exhausted.

And that was a real lesson for me.

I don’t know about you, but I tend to get into a rut. I have a schedule, I stick to it, and I try my hardest to avoid anything that takes me out of my comfort zone. Traveling across the world is challenging. Coming home right before Yom Tov is even more challenging. And, of course, it turned my entire schedule completely upside down (Literally! There’s a ten-hour time difference between Jerusalem and Portland.). But I stretched myself and took the plunge. It wasn’t easy, and I paid for it dearly, but had I not done it, I would have lost immeasurably.   

Waiting for the bus this morning, I met one my “writing friends,” and asked her about one of her neighbors, a woman whom I view as a very dear friend, although we almost never manage to speak with each other. “Oh, Sarah?” my writing friend smiled, “I just got an email from her. She wrote it in Singapore (Singapore?!) while waiting for her connecting flight to New Zealand. She’s visiting her son there.”

“Wow!” I responded. “This fits right in with an article I’m writing for Binah. I admire Sarah so much because she refuses to let her schedule take over her life. Although she’s well into her sixties, she continues to grow and experience new things, even though she knows that she’ll have to pay the price. The importance of that vibrancy, that willingness to explore and grow, is what I want to convey to my readers.”

My friend nodded. “I hope you succeed,” she said. “It’s such an important message.”

And that’s exactly what I am doing now.