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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. 

Saturday, February 4, 2017

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.  


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. 


Tuesday, December 20, 2016

Life Ain't Boring as appeared in Binah December 19,2016

Life is never boring. 

Even if you’re over sixty. Really.

If you don’t believe me, well, let me tell you about Yaakov, the man who cleans our stairwell each week lichvod Shabbos kodesh. In addition to washing floors, he works at the zoo, where he’s in charge of feeding the lions and tigers and bears.  Every morning, rain or shine, he gets up at 3 a.m., when normal people are still sound asleep (and others are lying in bed, wishing they could sleep!), so that he can get to the zoo by four. When I asked why these particular animals partake of such an early breakfast, he explained, “Savta, you have to understand, we can’t feed the lions and tigers and bears when the zoo is open because they eat meat — sometimes live meat. It’s bloody…but I won't go into all the gory details.”

I was glad he didn't.

Yaakov is one of the kindest people I have ever met. He’s profuse in his praise and rushes to help anyone with anything. Every time he catches me schlepping a bag of groceries up the two flights of stairs to my apartment, or running (okay, hobbling) down those same stairs to take out the garbage, he grabs whatever it is I’m schlepping and booms, “Savta, it’s my pleasure! I love helping you. Save your energy for your grandchildren, Savta. Halevai when I reach your age, I’ll be as active as you are…” 

 I never know whether to laugh or cry, but I always accept his help.

Hoshana Rabbah afternoon, I was on the verge of collapse from the constant cycle of cooking, cleaning and serving. The floors needed to be washed (aka, sponja), while my body craved sleep. Suddenly, I heard a loud knock on the door. It was Yaakov, requesting asking for a bucket of water to clean  for washing the stairs. I had an epiphany. Perhaps Yaakov was the answer to my dreams, or should I say, my desire to be in dreamland? Yaakov literally jumped at the opportunity to sponja my floors. “Savta, really, at your age you should be saving your energy for your grandchildren. Isn’t that what we’re here for, Savta? To do mitzvos and help each other?” I couldn’t (or wouldn’t)argue with his logic.

One Thursday evening I had just returned home from walking two granddaughters to the bus after tutoring them in English and math, when a grandson walked in to inform me that he and his older brother (who are learning in yeshivah here in Eretz Yisrael) will be staying with us until the end of bein hazemanim. I was in the middle of defrosting the chicken for Shabbos, so I removed a couple more pieces from the freezer, lichvod Shabbos kodesh. Big pieces, because yeshivah bachurim like to eat.

Half an hour later, the same grandson informed me that in the end, he and his brother would be spending Shabbos with their Rosh Yeshivah in Bnei Brak. I was just about to put the still-frozen pieces of chicken back in the freezer when my daughter called to ask if her two teenage daughters could spend Shabbos with Bubby and Zeidy.

The chicken was not returned to the freezer.

The phone rang again. “Mrs. Shapiro,” said the sweet but slightly hysterical seminary girl. “I know it’s kind of late to ask, but could me and my friend come for the Shabbos morning meal?”

I took a few more chunks of cholent meat out of the freezer.

I really wanted to start cooking, but first I had to finish my sponja. Yawn. I hate sponja. I’d much rather sleep. Or cook. Or do anything else, but…

Then, like in one of those Eliyahu Hanavi stories, there was a loud bang on the door. It was Yaakov, asking for water to wash the stairwell. Of course I asked him if he could finish my sponja, and he was more than happy to comply. “Savta,” he boomed, “it’s a mitzvah. I love to help! You just stay healthy, Savta. Halevai I should be so active when I’m your age…”

As Yaakov squeegeed the last of the water out the front door, into the stairwell, he began to talk about his job feeding the tigers. 

Suddenly, I had another epiphany.

The window box outside my kitchen has become Jerusalem's main pigeon facility. Somewhere in the city there must be signs posted in pigeonese informing all birds that they can do their thing at the Shapiros. Now, I have nothing against pigeons, as long as they stay far away from me… but I really have no idea how to clean the mess, nor how to permanently close the facility. But I was sure that Yaakov would know.

Not only did Yaakov know what to do, he offered to come by next week and take care of the problem. “Savta, don’t worry. It’s no big deal, Savta," he boomed. “Savta, see that house over there?” he pointed to a brightly lit window on the third floor of the building across the street. “Last week, a rat the size of a large cat was hiding in their kitchen closet.”

I turned white. My grandchildren, who had been listening to the whole conversation in amazement, had to hold their stomachs to stifle their laughter.

“Oh, Savta, there’s no reason to get upset," Yaakov said when he saw my expression. " I didn’t mean to make you sick. There is no rat in your house. It was over there, Savta, across the street. I got rid of it for them by pretending to be a cat. Listen, 'meow, meow.'” He really did sound like a cat. “The rat wanted to get away from the cat, so it ran out of its hiding place and I—”

I won’t go into the gory details of how Yaakov managed to extricate the rat and cause its early demise, but the moment he closed the door behind him, after promising, of course, to return next week to take care of our pigeon facility, my grandchildren almost fell off their chairs as they broke out into hysterical giggling.

 “Bubby,” one of them gasped between bursts of laughter. “These things only happen in your house.”

I don’t know if that’s true. I really don’t know what goes on in other peoples’ homes. But one thing I do know. Life in my house is never boring.

Even though I’m over sixty.

Wednesday, December 14, 2016

MY NEW Project

I have been working very, very hard on this project. Anyone who can assist in any way, it's a HUGE mitzvah! I can be contacted at tikvah4parkinson@gmail.com


AND HERE IS THE NEW WEBSITE:http://www.tikvah4parkinson.org/

Here's a write up I made for the WPC:

How the WPC Inspired Me
Debbie Shapiro, PwP, Jerusalem, Israel
Parkinson is a very isolating disease. Your world grows smaller, and slower, while around you, the people you know, and love, are rushing, accomplishing, doing, at what for you is now a dizzying pace. It’s hard to explain to anyone not battling the slowness and stiffness of Parkinson what it’s like to wake up in the morning and have to literally force your feet to move. You want to crawl into bed, curl under the covers and do nothing, but you know that doing that would be a death sentence, that it’s crucial to get up and go, be with other people, exercise, work, and accomplish.
At the WPC I was together with thousands of others like me. I didn’t have to feel embarrassed if it took me a few moments to find the courage to step on to the escalator, or walk across the room. The people there understood me. They were there, together with me. We were battling the same enemy.
But it wasn’t just the camaraderie, the sense of belonging. There very air was charged with optimism. It pervaded every conversation, lecture and workshop. We felt unified, and that it is our obligation to do everything in our power to keep ourselves healthy, to continue living our lives to its fullest, despite our limitations. It was like being part of a gigantic cheering squad, urging me to stretch to my utmost.
The lectures and workshops touched on almost every aspect of living well with Parkinson, but even more, they gave me, as well as the thousands of others who had come because they believed that it’s possible to continue living well, despite Parkinson, a feeling of hope.
I returned home inspired to share what I had learned with my community. Sadly, in Jerusalem many people are embarrassed that they have Parkinson and as a result, they remain at home, isolated and sedentary. In addition, there are almost no programs available in Jerusalem for PwP, and none that are sensitive to the specific needs of the Orthodox community. As a result, I opened an organization, “Tikvah (hope) for Parkinson” for the Parkinson community in Jerusalem. Our vision is to educate the Parkinson community about the need to be proactive in their own care, organize support groups and Parkinson exercise/physical therapy groups, and advocate for better care for PwP in Jerusalem.
Our first event is planned for January 3, 2017 and includes lectures by Professor Nir Giladi, head of the Department of Neurology at Ichalov Hospital and Rabbi Gedalia Finkel, Rosh Yeshiva in Yeshivat Mirr, Jerusalem. To learn more about what we do, please go to http://www.tikvah4parkinson.org/ or contact me directly at tikvah4parkinson@gmail.com

Wednesday, December 7, 2016

Exceptional Times

Exceptional Times

Motzoei Shabbos, I was sitting with my husband, nursing a steaming cup of tea, wondering what in the world I was going to write for my upcoming article. “It’s due in two days. Give me some ideas,” I said to him.
“How about something on how to buy an esrog.”
“Ah, c’mon. That’s not for the ladies.”
“Well, maybe something about the sukkah. Lots of interesting halachos there.”
I rolled my eyes. Obviously he was not getting it. That’s because, well, as they say, men and women are from different planets, and besides, although the article is due in Elul, it will only be published in Cheshvan. By then, even Martians won’t be terribly excited by an article on Sukkos.
But Hashem is very good to me, because Sunday morning I had an interesting conversation with a seminary principal about what it was like to come to Eretz Yisrael in 1971 and that, of course, got me thinking, which, in turn, turned into material for an article.
Life in Eretz Yisrael was so different back then. On a physical plane, it was like going back in time to when my parents were young (and that really was a long time ago!). Yes, refrigerators had recently replaced ice boxes and almost everyone owned a washing machine, but dryers (and disposable diapers) were still unheard of. Two burner gas stoves had only recently replaced the primus, a primitive camp stove, as the standard mode of cooking, and ovens were an almost unheard of luxury; people baked in little round pots call “Wonder Pots.” In 1974, when I became an olah chadashah, the primus was included as part of my aliyah package, together with a sponja stick and shmatta, a straw broom, a metal bed, a straw mattress, a stool, a table and a roll of toilet paper!
The first time I traveled to Yerushalayim I was shocked by the absence of street lights on the narrow two-lane highway connecting the Holy City to the rest of the country. Yerushalayim boasted only one traffic light, on the corner intersection of Yaffo and King George, but it was really only there for show as there were almost no cars on the roads.
A friend of mine once got into a minor traffic accident with another woman driver. When she said to the sergeant at the police station, “The other woman suddenly stopped,” he interrupted her story to let her know that he already knew the other driver’s identity because (I kid you not!) there were only two female drivers in the city!
Physically, Yerushalayim was much smaller. I was friendly with a family that lived in the old (which at that time was the new and only) Kiryat Sanz neighborhood. The eight story apartment blocks sprouted incongruously from surrounding empty hills. At night, when I walked from Rechov Eli Hakohen down the hill to Kiryat Sanz, I would hear foxes at the side of the road (and occasionally, I even caught a glimpse of their eyes!), while from the zoo on the other side of the road (now Minchat Yitzchak) the lions roared (and I quivered inside!). But there were other animals too; it was not uncommon for an Egged bus to stop to allow a flock of sheep to cross the street.
Readymade clothes were expensive and difficult to find. There was but one dress shop in all of Geulah and Meah Shearim; we called it the “hole in the wall.” Seamstresses would make home visits to sew the family wardrobe. The entire family was recruited to help, and of course it was considered a valid excuse for all the girls to remain home from school. Faded outfits were turned inside out and resewn. Old sweaters were unraveled and the wool recycled.
Phones were a very difficult-to-attain luxury, which made life very complicated for us seminary girls hoping to get a taste of the country via Shabbos invitations. Postcards were sent out weeks in advance, and sometimes we’d travel across town to ask if we could come for Shabbos, only to be told to, “I have to ask my husband. Come back tomorrow for an answer.”
But although the country was small and undeveloped, the people I met were giants. They each had their own personal story of mesirus nefesh. They had journeyed to Eretz Yisrael via Auschwitz, or Siberia, or on a camel, or had miraculously managed to catch “the last boat.” They had learned in the great yeshivos, under the Chafetz Chaim or HaRav Elchanan Wasserman, z”l. They had studied in Cracow under Frau Sarah Schenirer. They had lived through exceptional times, and I was jealous of them. After all, I was living such a mundane life.
But looking back, I realize that I had been wrong. These giants had lived in an exceptional era, but I also lived in an exceptional era. And today, we are also living in amazing times. Fifty years from now, we will look back at our nisyanos and marvel how we not only managed, but how we succeeded in growing and becoming greater as a result.
And hopefully, by the time this article goes to print, all of us will be able to look back at Elul, which is when it is being penned, and wonder how we survived without the Urim v’Tumim and the Sanhedrin to guide us.
And even Martians or Plutonians, as well as those of us from Jupiter or Venus, will be able to relate to that.


Debbie Shapiro is a wife, mother, grandmother and longtime Jerusalem resident. Her latest book, “Women Talk,” is a compilation of interviews with great Jewish women. Debbie can be contacted via Binah Magazine. She’d love to hear from you.

Tuesday, November 29, 2016

The World Parkinson Congress

“What did I gain from the WPC?” Parkinson is a very isolating disease. Your world grows smaller, and slower, while around you, the people you know, and love, are rushing, accomplishing, doing, at what for you is now a dizzying pace. It’s hard to explain to anyone not battling the slowness and stiffness of PD what it’s like to wake up in the morning and literally force your feet to move. You want to crawl into bed and do nothing, but you know that doing that would be a death sentence, that it’s crucial to get up and go, be with other people, exercise, work, and accomplish. Parkinson’s forces you to live in a slower reality. Things that once upon a time you were able to do without thinking now requires total concentration, which is difficult for others to understand.
At the WPC I was together with thousands of others like me. I didn’t have to feel embarrassed if it took me a few moments to find the courage to step on to the escalator, or walk across the room. The people there understood me. They were there, together with me, battling the same enemy.

But it wasn’t just the camaraderie, the sense of belonging. There very air was charged with optimism. It pervaded every conversation, lecture and workshop. We felt unified, that we were in it together, and that it is our obligation to do everything in our power to keep ourselves healthy, to continue living our lives to its fullest, despite our limitations. It was like being part of a gigantic cheering squad, urging me to stretch to my utmost.

The lectures and workshops touched on almost every aspect of living well with Parkinson, but even more, they gave me, as well as the thousands of others who had come because they believed that it’s possible to continue living well, despite PD, a feeling of hope.

Of course all of this was possible for me, as a religious Jew, thanks to Sparks of Life. I don’t know how I would have survived without their three glatt kosher meals (with a mashgiach tamidi!) each day. And it was wonderful to have a quiet area of my own, in the middle of this enormous, busy conference, where I could relax and socialize with other frum Yidden, who, like myself, were facing the challenge of Parkinson from a place of emuna and bitachon. Thank you Rabbi Gruskin. Thank you Sparks of Life.