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Sunday, March 26, 2017

BEYOND THE SMILE -- as appeared in Bina Magazine

A few weeks ago I returned home from our local Shabbos shiur in an incredibly rotten mood. Ironically, the topic was simchah. The speaker, a dynamic young woman with a bouncy blonde sheitel and a sparkling, picture-perfect smile, bubbled effusively, “Our faces are reshus harabbim. They are public property. When you smile, the whole world smiles with you, but when you look glum, it negatively impacts those around you.”

Yes, I’ve heard this idea a million times. And I know that it’s true. Our emotions are contagious.

I can almost hear you asking the obvious question. If this is something the author believes to be true and has heard many times before, then why did hearing it at a shiur have such a negative effect on her?

Simple. People with Parkinson’s (like me) often develop what’s known as the Parkinson’s mask. That’s because their facial muscles sometimes become so stiff that they follow gravity in a downward spiral. And when that happens, unless they are consciously concentrating on putting on a cheerful countenance to the world, their mouths slide into a frown and they look, well, sad, or (even worse), spaced out. So when I am concentrating on something, be it on my writing, or my exercise, or even figuring out how to navigate Yerushalayim’s crowded streets, my mouth gets droopy, or, even more embarrassing, drops opens (without my even noticing it) and I look, well, not at all like the intelligent, thinking woman I aspire to be.

It’s frustrating. According to what I just wrote, if you see me sitting on the bus looking deep in thought, chances are that I’m just worried about my appearance, but if I look totally spaced out, then probably my mind is busy conjuring up ideas for my next article, or I’m solving some weighty worldwide crisis. 

Although I don’t want to confuse you, in truth it’s not so simple. Parkinson’s is one of those crazy on-off diseases. So although at times, I can be perfectly fine and look like the picture of good health, I can just as suddenly turn “off” and become incapable of doing almost anything, including smiling. So that means that when I appear to be an intelligent woman deep in thought, I might actually be thinking about something important, rather than concentrating and looking intelligent, but then again, I might not, and when I appear to be spaced out, I might (figuratively) be landing on the moon, but then again, it’s very possible that my feet are firmly on the ground.

So now that you understand (or, admit it, you really don’t. But I won’t tell anyone) why a shiur on simchah put me in a bad mood, I’ll also let you in on a little secret: It didn’t last long. A Shabbos nap, a bit of ice cream (the panacea for all problems) and I was back to my jolly old self —- even if I couldn’t maintain a Colgate smile.

As I write this, I am trying to think of what deep message this story contains, one that can inspire the reader to greater heights in her avodas Hashem. And the truth is, I can’t think of anything incredibly profound, other than the obvious: "Al tistakel bakankan, ela vameh sheyesh bo, do not look at the vessel but at what is in it." Looks can be deceiving. It’s the pnimiyus, a person’s essence that counts.

And as for the importance of smiling, yes, I agree it’s a good thing, and I will, if I can. But if I can’t, I won’t. But I’ll be more than happy to talk with you, and encourage you, and daven for you — and even more than that, I’ll try to be your friend. I’ll be there for you, in a real, way. And isn’t that what’s really important, even if I can’t always brighten the lives of those around me with a happy smile?

Thursday, March 2, 2017

Growing in My Yiddishkeit -- this interview was published in 2008 in the Lakewood Shopper

an interview with Rochel Trugman 

I recently ran into Rochel at a memorial evening held for a common friend of ours, Meira Burkey a"h. We sat in a circle and reminisced about the wonderful things that Meira had done with her life, and how, in her quiet and direct way she impacted so many people. It was one of those magical evenings spent meandering down memory lane, looking back with foggy, gold rimmed glasses on a world that was – at least in our memories. As always, Rochel's comments were sharp and sensitive and mirrored her rugged individuality.

Debbie Shapiro: Could you tell us about your background?

"I grew up south side Chicago in a postwar baby-boom neighborhood. Our family attended a conservative synagogue. The rabbi, Rabbi Eliot Einhorn, was from the 'old country.' He spoke with a thick European accent and couldn't relate to us young Americans. His daughter went to public school with me. I thought that she was extremely brave for refusing to sing goyishe songs before their holiday. I had one friend who kept kosher. When I was fifteen, I visited her during Pesach and was flabbergasted when I went into the kitchen. Everything was turned around for the holiday! There was a record of Jewish music playing on their HiFi that I really liked. It turned out to be Reb Shlomo Carlebach, who would later have a very strong impact on my life.

"In the sixties a non-Jewish friend and I traveled to California to seek the truth. We visited all sorts of interesting places -- missions, cults, ashrams – in our search for emes. One of the stops along the way was a Jewish commune called the House of Love and Prayer in San Francisco. Had anyone told me that it was really a synagogue, I would have never step foot in the place! I remember walking into the door and being warmly welcomed by Miriam Succot (today her husband is a rav in Jerusalem). It was time to light the Shabbos candles. She invited me to light one and helped me make the bracha. Standing there, surrounded by all the other women lighting their candles, I felt as if I had finally come home.

"The House of Love and Prayer, Reb Shlomo Carlebach's synagogue in San Francisco, was an odd mishmash of spiritual seekers and nuts. The people who were looking for emes found it. Most of us continued to grow in our Yiddishkeit. Some didn't.
"After spending almost every Shabbos at the House of Love and Prayer, I was determined to move to Israel. I remember marching into the San Francisco aliya office, telling them that I wanted to make aliya to Eretz Yisrael, to the holy city of Jerusalem. They tried to convince me to travel there as a temporary resident, to see if I like it before taking such a drastic step, but I was determined to make aliya. 'Israel is the only place for a Jew to live,' I insisted. 'I want to ascend to the Holy Land.' 
"I left San Francisco in the beginning of 1970. All my friends came to the airport with their guitars, drums and tambourines to see me off.  It was very emotional; lots of singing, hugging, dancing and tears. I was living the dream. I was on my way to the Promised Land; I was ascending to Jerusalem, the holy city! I was so young and idealistic – and naive.

"When I came to Israel my entire Hebrew vocabulary consisted of just three words: 'ken,' 'lo' and 'shalom. In the taxi that took me from the airport to Jerusalem, I kept asking the driver how much longer it would take before we arrive in Yerushalayim! That's when I learned my fourth Hebrew word: savlanut (patience)!

"I found myself a small apartment near the center of Jerusalem and attended every available English language shiur -- but there weren't very many. One day Rabbi Refson, Neveh's founder and dean, drove up to my building in his little motorcycle and asked me if I would be interested in attending the women's yeshiva that he was starting. I jumped at the opportunity."

Debbie Shapiro: The following year, 1971, I came to Israel to attend Neveh Yerushalayim Seminary, which was then beginning its second year.  But first had to go for an interview with the dean, Rabbi Refson. We arranged to meet in an office above Kikar Shabbos. He walked into the office carrying his motorcycle helmet! I was flabbergasted and whispered to a friend who had come with me, "I will not go to a school run by Hell's Angels!" Then I politely explained to the rabbi that instead of going to seminary that year, I had decided to volunteer on a kibbutz (that was the only excuse I could think of at the spur of the moment)! In the end, I attended Bais Yaakov Yerushalayim, today known as BJJ. As for the motorcycle, I soon discovered that motorcycles were a much more common mode of transportation than cars, and certainly not a sign of belonging to a fringe element.

Rochel:  "The entire Neveh Yerushalayim campus consisted of one small top floor apartment in Bayit Vegan. We learned and ate in the living room; the bedrooms were the 'dorm.' After studying there for one year, I realized that as much as I loved the school, I needed to learn something that would prepare me to enter the Israeli job market. So I transferred to another seminary that issued a State recognized teaching degree.

"The first year in the new seminary I barely scraped by. The classes were in Hebrew. Although by then I knew a lot more than four words, I was still far from being fluent. The second year I did much better. At the end of the year I graduated with an official diploma.

"Armed with an official teaching degree, I found myself a job teaching art in the Israeli public school system. The children were from poor homes and very, very rough. Imagine, forty two kids, absolutely no art supplies; yet I was expected to teach art! But baruch Hashem by the time I left the job three years later, I was doing great. During this time I met my husband, Avraham Arieh, and we were married.

"My husband and I dreamed of living in a rural religious community. Someone told us of an abandoned Nachal settlement that belonged to Poalei Agudath Yisrael [PAI]. They were looking for a garin, a seed group, to establish a moshav there.  The moshav (which we later called Moshav Meor Modiin, because the Amshinover Rebbe, Rav Meir Kalish ztz"l, blessed us with hatzlacha and bracha) was located in the middle of nowhere, not far from the old Jordanian border. Six (!) different seed groups had tried to settle there before us – and had failed.

"We were a group of seven idealistic American couples – dreamy eyed and with almost no practical experience. We moved to our new home – a barren plot of land -- in the summer of 1976. Originally Moshav Meor Modiin was founded as a moshav shitufi, a cooperative moshav, which is similar to a kibbutz in that everyone owns everything, yet different in that families receive a monthly paycheck to use as they see fit (eventually we privatized). Most people assumed that we'd last just a few months. Thirty two years later, the Moshav is flourishing!

"Today Moshav Meor Modiin, bordering the newly built city of Modiin and just minutes from Kiryat Sefer, is centrally located. But when we settled there, it was extremely isolated. We were an hour and a half drive from Jerusalem. All around us were mountains covered with lush forests. What is today the major Jerusalem-Modiin highway was nothing more than a rarely used two lane country lane. We did our weekly shopping in the Lod shuk, winding our way between the vendors selling camels and sheep! 
"We wanted to create a place where we could invite the whole world to taste the beauty of Torah. We wanted to dance and sing, and recreate the atmosphere of San Francisco's House of Love and Prayer, only here, in Eretz Yisrael, it would be centered around families and children, and everything would be according to halacha."
Debbie Shapiro: While writing up this interview, I did some research on the moshav and wanted to share this tidbit, taken from Moshav Meor Modiin's official website, with my readers. "… The very next day he hitched a ride to Modi'in. When he reached Gimzo Junction he waited an hour for a ride, hut no cars passed, so he walked the last five miles."
"The families with children were given small, two room houses that were built like bunkers to withstand Jordanian bombs. We were housed in a tiny one bedroom (if you could call it that!) caravan. There were no gardens and only few trees, but if you were come today, you would never believe it -- the moshav is lush with greenery, most of which we planted ourselves! At night, we were entertained by the jackals howling in the surrounding woods. But after we convinced the Jewish Agency to purchase electric guitars for us, we made enough noise to frighten them off."
Debbie: The Jewish Agency purchased electric guitars for you? That's amazing!
"The Jewish Agency was a bit shocked at our request for electric guitars. Most moshavs requested things like tractors or help in building factories, not musical instruments! The Jewish Agency had purchased a plastic bag factory for the previous garin. But we were all American hippies cum baalei teshuva and into health food and ecology. We couldn't imagine devoting our lives to producing something as mundane as plastic bags, although tractors would have been helpful for growing our organic vegetables! Eventually the plastic bag factory was converted into a whole wheat flour mill, as part of our health food industry.
"It took some persuading on our part until the Jewish Agency was finally convinced that we were really going to use the guitars to support ourselves, and not just to have fun. Once we had the guitars, we opened a band, Modiin' L'Simcha and started playing for schools and weddings and performing at concerts. We succeeded in our goal of spreading simcha and Yiddishkeit, while supporting ourselves at the same time. In addition to playing music and producing granola, we also tilled the land. We planted avocado and apricot trees and grew wheat. We worked hard, but we were young and idealistic. I felt like a pioneer. I had changed from an idealistic hippy to an idealistic yet tough pioneer woman.
"In 1977, the Moshav started working with youth groups, hosting them for one day programs. Although we did not have the space or facilities to house and feed groups for overnight or Shabbat programs, in the winter we hosted programs in the community's shul and dining room.
In 1984 the Moshav opened the Meor Modiin's Medrasha L'Yahudut, which worked with all sorts of groups all year round.  My husband was the Medrasha's director. Our programs were extremely successful, with over 5,500 participants annually. But in 1989, with the beginning of the 'Intifada', youth group tourism virtually came to a halt, and the Medrasha ceased to function.
"When the Medrasha closed down, my husband and I decided to go to the States for a few years to work in kiruv. Avraham Arieh got a position in Denver, Colorado, opening a new NCSY (National Council of Synagogue Youth, the OU's official youth group) region. Originally we were planning to stay there for just three years, but when my in-laws had health problems we realized that we couldn't leave and remained for seven years.

"The intermarriage rate in Denver is seventy percent! We battled that by creating an orthodox social network for Jewish teenagers, hopefully inspiring them to become more committed Jews. We organized Shabbatons, picnics, outings, roller skating parties, weekly Torah classes, retreats, you name it! We also taught Torah classes in the public schools.

"Baruch Hashem, we had a lot of success. Many of the kids in our group became completely shomer mitzvos. We had one girl who lived an hour and a half drive from Denver. Her parents wanted her to have Jewish friends and drove her into Denver for all our activities. She was very popular and became regional president. Today she lives not far from Haifa, and is part of Zichron Yaakov's flourishing yeshiva community.

"When we returned to Israel in 1995, I went back to school -- Neveh Yerushalayim, my alma mater from twenty five years ago! I enrolled in Neveh's counselor program and got my master's degree in clinical sociology. As part of my course of study, we were supposed to choose a mentor to guide us. I had read Rabbi Pliskin's books and heard him teach at our college outreach programs here in Israel. Each time I was inspired anew, so sought him out and asked him to be my mentor. When I graduated, he gave me permission to do workshops based on his writings."

Debbie Shapiro: How has learning counseling changed your life?

"It taught me to be a better listener, to be less judgmental and more compassionate of others.

"My husband and I were hired to start a college outreach program called VISA and now we run our own program called Ohr Chadash. I like to joke that we graduated from high school – working with the NCSY high school students – to college! Since we started our college outreach in 1995 we have worked with over 25,000 college students.

Our Shabbatons and classes include lots of soulful singing and moving story telling. After our students return 'home' we keep in touch with them through email. Approximately 5,000 people on our email list receive divrei Torah on a regular basis. In addition we have a website,
www.thetrugmans.com  that provides audio classes on many topics including parshat hashavua. An overwhelming majority of the kids we touch end up becoming more religious. They also become part of our extended family.

"Every year our alumni in the United States arrange for my husband and I to lecture and give Shabbatons there. This coming Fall we're running programs in Washington D.C., Stanford, Connecticut, Boston, Denver and near Chicago. We get tremendous naches in seeing the strides that our students have made. Many have become Torah observant.

"We currently run a home hospitality program. Most Shabbosim we have between twenty five to thirty guests. There's lots of singing and dancing, good food, and connecting. People know that our home is a great place to be for Shabbos! Sometimes I feel that we should sell printed T-shirts saying, 'I've spent Shabbos at the Trugmans.' Some of our guests love it so much that they come back hundreds of times." 

Debbie Shapiro: How do you cope with all the physical work?

Rochel: Like Jewish women throughout the world, I start early. Wednesday is for shopping, Thursday for baking and Friday for cooking. A girl comes on Friday to do the cleaning.

"I cannot tell you how much I get from working with these kids. I feel that the neshomos we have touched are our extended family, and their children are my grandchildren! Sometimes, years later our students and guests just pop in unexpectedly – we're family, after all – to introduce us to their spouses and children. Each time I am moved anew.

"One time one of our former Denver NCSY kids showed up at our front door with his wife and three kids. He had just moved to Moshav Chashmonaim, a religious settlement near Kiryat Sefer. The last time we saw him he was eighteen years old and his father was dying in a hospice. We did our best to get him through that rough period. 

"We've also made a lot of shidduchim. One young woman who came to us was about to get engaged to a non-Jew in America. In desperation, her parents sent her to Israel, hoping that she'd find someone Jewish here and forget about her non-Jewish boyfriend. She met a young man at one of our programs -- and the rest is history! Today, she's married, religious, and living in Eretz Yisrael."

Debbie Shapiro: It sounds like you and your husband have really grown over the years, and are using your unique talents to impact people. How as the moshav changed during the last thirty two years?

Rochel: "It's much more beautiful! The children, and the trees, are grown. We're still a small rural community with only forty families. Most of our members are from the United States, with a sprinkling of Israelis. A lot of artists and musicians live here.

"Obviously in the last thirty two years we've matured. Religiously, our members are much more mainstream than they were then, and certainly more halachically observant. We're growing and changing, and hope to continue to grow and change."

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