Archive | Light Lines

Sweet, bitter memories intertwined

Posted on 03 August 2017 by admin

My son turns 61 tomorrow. On a recent morning, as I wrapped his gift for mailing, I realized the nightgown I was wearing had a connection with his bar mitzvah 48 years ago, early in August 1969.  I had postponed vital surgery because of it, but would enter the hospital two days later — after the out-of-town family had left. I had told none of them about it.
The evening after the bar mitzvah was also Selichot. I excused myself from the ongoing conversation and went to my synagogue, to sing the start of the High Holy Days liturgy with our volunteer choir.  I’d been involved in choral work since elementary school and loved Jewish music best; I had no idea then that I would never sing with any choir again.
A tumor had grown around the facial nerve behind my right ear.  The surgeon cut a flap that enabled him to remove the entire parotid gland, reroute some salivary glands, and scrape the nerve clean.  I awakened with a Bell’s palsy that lasted for many weeks.  But even afterward, fully normal facial motion could never be restored.  I had bought that nightgown to take to the hospital with me…
My face was horribly deformed.  No one, including me, had been prepared for this. The children came to visit; my son was stoic; my daughter, at 9, was not: Tearfully, (sadness? fright? anger?) she averted her eyes, crying out “That’s not my mother! Take her away! Bring her back when she’s my mother again!”  The last thing I cared about then was a nightgown…
After weeks of daily electric shocks to my face, the damaged nerve finally responded — but only partially. To this day, my right eyebrow and eyelid cannot rise to the level of my left. If I’m not judicious about the spicy foods I love, I still salivate outside, on my right cheek.  I don’t smile much, and the old habit of keeping a Kleenex balled in my right fist, to quickly cover my crooked mouth when I laugh, still persists. My “revised” face is why I resist being photographed; when it’s in motion, most people notice nothing.  But a camera catches the whole truth, every time.
And the scraped nerve vibrates — so much that I cannot sustain a note when I try to sing.  This has stolen the joy of choral participation from me forever.
About that nightgown: like so much women’s personal wear then, it is made of pure nylon.  Garments like this — ankle-length, with delicate neckline floral embroidery — are long out of fashion. But they never wear out; they are the clothing equivalent of iron. I’ve worn and washed this nightgown so often all these years, and it still looks new; I’m sure it will outlast me!  And it’s forever locked into my memory of that bar mitzvah and that Selichot, my final songs with any choir…
People who didn’t know me before the surgery don’t know that this is a different face than I had for the first 35 years of my long life, while the others continue to remember me as I was. My daughter never got her same old mother back, but as she grew older herself, she accepted me as I was. As most others also did. However, my first husband dissolved our marriage soon afterward.
Fred, my dear second husband, was a “widowered” old friend from long before the operation. When we came back into each other’s’ lives so many years later, the first thing he did was touch my right cheek, ever so gently, and quietly say, “It must have been terrible for you.” That was when I knew I would marry him…
As I look backward, the bitter and the sweet mingle inextricably, as things in life so often do. This weekend, I will be remembering my son’s bar mitzvah, my last Selichot song…and Fred, while I observe his third yahrzeit on our forthcoming Shabbat.

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That distressing but unavoidable conversation

Posted on 27 July 2017 by admin

I recently sat in a small circle of people in someone’s living room, learning how to have The Conversation. Capitalized, because it’s such an important conversation, one most of us don’t even want to think about it, let alone have. It’s the advance talk about what we, and our loved ones, want for the very last of our lives.
Yes, it’s open talk about dying. But the emphasis is on making life’s end — the inevitable for all of us — the way we choose. So first, we must be honest about accepting that inevitability, and then we can go about having The Conversation.
Some people are unlucky enough not to have any end-of-life choices. They’re killed in a random drive-by shooting. They’re hit on the head by something heavy falling from the top of a tall building when they just happen to be passing by. Or they’re marched away by a Hitler henchman, as so many of our people were in a past time we don’t dare forget. But for us who are living, and thinking about living but aging family members, having The Conversation should be at the top of the to-do list.
In the quiet room where I so recently sat, Laurie Miller led us through The Conversation’s steps. She knows how to do it, because for over a decade she’s been caring for the sick and the elderly in our community, and now she’s working with the Senior Source, the Dallas Area Gerontology Society, and other service groups to get the word — and the words needed! — out to many others.
Everybody is going to die, regardless of anything else. It’s interesting, I think, that it’s Jews who are leading this effort to make personal choices for end-of-life living: This project was the brainstorm of Pulitzer Prize-winning Ellen Goodman, the Boston columnist who first articulated the need for The Conversation as her own parents aged. And Laurie Miller proudly announces her local temple membership along with the work of her company, Apple Care and Companion.
We didn’t have The Conversation itself in our little group; we spent a couple of hours of learning when and how to broach the subject, and what should be talked about. Everybody got a Conversation Starter Kit outlining a Ready-Set-Go method of approaching those we should be talking with, a gentle path from thinking about matters that nobody really wants to talk about to acknowledging the reality that we must confront them. Because if we don’t, our final decisions are likely to be made by dispassionate strangers.
The Conversation itself will include such simple things as a preference for where to die: at home, or in a hospital or other care facility? Personal comfort: sheets tucked around the feet or not? Pain: ask for medication, or let others make that decision? Company: someone to hold your hand? (And who should that someone be? Or would you rather be left alone?)
Music? Words being read aloud? (It’s widely believed that the sense of hearing persists almost to the very end of life, so what — if anything —would you like to hear?) Would you or your loved ones choose to have a rabbi or other clergy person — remember, this is a non-religious project, open to all — pray with you? These decisions should all be made in advance of need, in addition to estate plans and wills for taking care of post-death financial matters.
The Conversation Project also puts emphasis on the people who will make our end-of-life medical decisions when we can’t do so for ourselves. In addition to the Starter Kit, it provides an invaluable second booklet on both choosing a health care proxy and on being one ourselves.
In our little group, some people cried. Many asked questions. Everyone said thank you at the end, and meant it. I’m hoping many more will soon prepare to have The Conversation. The Conversation Project, now a recognized nonprofit, is ready to help.

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All Jewish kids deserve camp experience

Posted on 20 July 2017 by admin

Bradley Laye, the Dallas Federation’s CEO, recently wrote to our community praising the beneficial effects of Jewish summer camp on children’s future lives. I’m seconding his motion, because my love for Judaism, and all my involvements in it, are rooted in that experience.
My camp began at the turn of the 20th century as a needed getaway for overworked immigrant women and their small children living in a teeming, smoke-filled city. A wealthy family first endowed a settlement house to help with Americanization, naming it after a daughter, Irene Kaufmann. The camp came next, named for Emma. Because the site was a quiet place in the farming area 30 miles outside Pittsburgh, Emma Kaufmann Camp quickly became known as Emmafarm!
My childhood home was Jewish in name only. Mother, a social type, served as president of her Sisterhood but attended synagogue only on the High Holidays. Father didn’t even do that; remembering his unhappy childhood in cheder (and when I read Philip Roth’s amazing story, The Conversion of the Jews, I know what he went through), he would never again walk into a institution headed by a rabbi! But as a doctor who was a declared, although never devout, Jew, he volunteered annually to do all required pre-camp physicals for kids going to Emmafarm at no charge.
The summer I would turn 9, he asked if I’d like to go to camp, too. I said yes. And the time I spent there 74 years ago shaped my Jewish future!
It wasn’t the physical place that did it; Emmafarm was practical and undistinguished. Far away from any lake front, it had only a pool. The flat main campus, like a rectangular college quad, had four large buildings running down each of its two longer sides — on one, the boys’ units; opposite on the other, the girls’. All were named for birds: Girls began as wrens and eventually grew up into woodpeckers; boys progressed as they aged from robins to eagles.
But at the head of the quad was the dining hall, and that’s where Jewish magic took place every Friday evening. We would file quietly into that huge, echoing room, which was full of chaos three times a day every other day as kids reached and grabbed across tables for whatever bowls and platters they wanted, hardly deterred by their exhausted counselors. Yet with Shabbat approaching, without anyone having to say a word, the mood shifted into something totally different. Something quietly wonderful…
First of all, the tables were clothed in white. And so were we. Everyone, all white, from head to toe. And as we entered, we sang that old, old hymn: “Come, O Sabbath day and bring … Peace and healing on thy wing … Thou shalt rest. Thou shalt rest …”
I recently read a piece, written by a minister, suggesting that Christians should look again into their hymnals and bring back the singing of some very old songs. I think we Jews should do the same. I don’t know how many of my fellow campers (and many of us, including me, continued on as Emmafarm counselors) still remember that song. But I sing it to myself, in my head, every Friday evening as I walk into synagogue. That one hymn alone was enough to make me Jewish for a lifetime!
I don’t know, either, how many others those Shabbat evenings similarly affected, but I do know that Emmafarm “graduated” an astounding number of adult Jewish professionals — teachers, social workers, camp directors and — yes — rabbis! Among them: the distinguished Earl Grollman, who served a Massachusetts congregation for 36 years while establishing an international reputation for his counseling and writings on bereavement. (And, btw: He met his wife at Emmafarm!)
So: Thank you, Bradley, for reminding our entire community that every Jewish child deserves a Jewish summer camp experience. Truly, its positive effects will last forever!

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My birthday prayer at 83

Posted on 13 July 2017 by admin

This-coming Shabbat will mark my 83rd birthday. It might be an occasion to celebrate my second bat mitzvah — if I had had a first …
When I was a youngster, I went to Sunday School, of course, but I couldn’t attend weekday Hebrew school. And I couldn’t stand on the bimah of our shul, or hold a Torah.
I don’t say I was denied these experiences so much as brought up to recognize that they were meant only for males. I wasn’t resentful, just resigned. But I wasn’t happy with the restrictive roles that Judaism then assigned to women. I didn’t question the expectations: Certainly I would marry and have children. But I didn’t like the centerpieces of that life: I was totally un-fond of the kitchen, and hated dusting, sweeping, washing, ironing, and all the other routine chores that fell to my sex.
Years later, as my children still recall, I once told them that some mothers stay home and bake cookies, and other mothers do other things; like it or not, life had given them one of those “other mothers.” So I stepped outside my home, working even when that was frowned on by the traditionalists surrounding me. In this I was enabled by a neighbor woman who had sought help from her minister: Staying home and baking cookies caused severe depression. She was able to face down the local critics only because she’d received “permission” to take a paying job and hire some household help.
A journalist, she opened the local newspaper’s door for me. I compromised, working only when my children were at school; my understanding employer granted me the freedom to leave my office when those children were doing something at school that mothers should be attending. (How interesting: Nobody ever thought fathers had to attend those daytime functions …)
But look at all that’s happened since! Women not only learn Hebrew; in non-Orthodox congregations, they stand on their bimahs, holding Torahs, leading services — even as rabbis! And soon, after a struggle of years, I thought they would be able to worship openly and freely at the Western Wall, in an egalitarian venue created specifically for this purpose. Imagine a woman standing by her son for his bar mitzvah instead of having to peek at him over a barrier! Imagine her there, with a daughter or granddaughter becoming a bat mitzvah!
But the voices of dissent to all of this are loud ones. Not surprising, because Israel, with all its exciting freedoms, is still bound religiously by traditionalists who cling most closely to the old, women-restricting ways. The backlash has not been pretty, and even reasonable protest has been less effective than hoped for. However, although the Torah tells us that Eve was brought forth from Adam to be his helpmeet, it does not say that she or her female descendants should be relegated forever to kitchen duty and household chores. Yes, it says she will bear children for them both, in pain, while Adam sweats to earn a living for them. But nowhere does it specify that the Torah and its mandated reminders, those threads of blue, are altogether forbidden to her.
When all the women of my generation are gone, these dichotomies will have virtually disappeared in modern Diaspora Judaism. However, I continue now to straddle the issue, with one leg firmly planted in my traditional upbringing, the other steady in the camp of the more non-restrictive life my heart and soul long ago led me to pursue.
Today, I applaud each bat mitzvah of my congregation as her parents present her with her own tallit. I do not wear one myself. I do not carry a Torah. But maybe, just maybe, I will do both — if I am privileged, someday, to stand by the Wall in Jerusalem, in a place that our once-and-forever homeland will see fit to grant for women. This is my 83-year-old birthday prayer…

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Wisdom from variety of voices

Posted on 06 July 2017 by admin

This week: words of wisdom culled from a wide variety of sources that stretch from medieval times to today. “Wising up” can even be fun! So here we go …
Let’s start with one of recent history’s most famous, influential men: Albert Einstein. Did you know he also had a sharp sense of humor? Try this, from the theoretical physicist who appears here as a pop philosopher: “The devil has put a penalty on all the things we enjoy in life. Either we suffer in health, or we suffer in soul, or we get fat!” Who would have expected that?
This bit is from Kahlil Gibran, a true pop icon about a half-century ago, with soulful writings that often found their way into wedding ceremonies. People called him “The Prophet” and thought he was from ancient days, but not so unless you consider the late 19th century to be “ancient.” Here’s a sample to ponder: “When life speaks, all the winds become words, and when she speaks again, the smiles upon your lips and the tears in your eyes turn into words…”
Way back in the 16th century, Dominican priest Giordano Bruno was already something of a forward-looking scientist; he believed that “Every human thought, like every speck of nature, is connected to all other things…human thought resembles the structure of the natural world…”
Now, moving into much more modern times, we encounter Bill Clinton, who as he was growing older recommended this: “Never waste a day wishing you could do what you can’t do any more.” Do you think all former presidents wasted, or still waste, time like that? A well-known non-president, Martin Luther King, Jr., also thought practically rather than philosophically when he said something about Americans that every one of us should be taking seriously today: “We all arrived on different ships. But we’re in the same boat now…”
The following quote was chosen to end a long obituary, written as a letter to a much-beloved woman and signed by “Your Adoring Family.” These are words of the great, remarkable Helen Keller: “That which we once enjoyed and deeply loved, we can never lose, for all that we love deeply becomes part of us.”
I haven’t (yet) been able to properly verify the source of this quote, but the writer is, or was, a religious Catholic, and I wish more people agreed with him: “There is a strong connection between Jews and Christians…Catholics and all Christians tend to forget the fact that Jesus was Jewish. This is a part of our heritage that’s been lost, and has to be regained.”
Let’s move once more far, far back into the past, to learn from the 13th-century mystic poet, Jalaladin Rumi, how to be a truly human being: “Be a lamp, be a lifeboat, be a ladder. Walk out of your house like a shepherd, and help someone’s soul heal…”
This amazing lesson was left by the late comedian Gilda Radner, quite serious at the close of her too-short life: “I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it — without knowing what’s going to happen next…”
Our own Ben-Tzion Spitz, former chief rabbi of Uruguay, recently applied the practicality of long-gone but certainly not forgotten novelist Henry Miller to today, using this quote in one of his weekly Torah Shorts: “There is no salvation in becoming adapted to a world which is crazy…”
And finally: “I learned a lot,” a bat mitzvah father’s friend said, “when Phil stood on the bima and told his daughter that he had no material wealth to give her, but that he has given her the culture and background of his people, which he hopes will shape her life.” Wisdom for us all!

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Remarkable spirit of writer Weiss

Posted on 29 June 2017 by admin

I pulled in last Sunday’s paper from my wet porch, silently thanking the delivery guy who bagged it in plastic, opened it up, got rid of that mountain of unwanted advertisements, and finally encountered …
… Jeffrey Weiss. On the first page of the Arts and Life section. Which has a bit of weird humor in itself: Jeff is an artful writer, and here he’s writing the story of his own life.
It’s not often that someone embodies this rare combination of circumstances: a terrible cancer history…a “way with words” to describe what it’s like to be walking in such uncomfortable metaphoric shoes…and the outlet to put those words before a huge reading public. But Jeff has all these things — in spades.
A longtime reporter for the Dallas Morning News, he’s had to cut back greatly in the last few years. But here’s a good thing: This paper doesn’t desert those faithfuls who cannot be full-time faithful any more. Jeff is the second such person I’ve known; No. 1 stayed on payroll until he passed away. Reality says this is what No. 2 is looking at now. But something else is different: Jeff’s able to write about what’s trying to kill him. He’s reporting on himself, in infrequent but long, thorough installments. The latest was in last Sunday’s paper.
Going Out Like Fireworks is what Jeff has named this detailed, honest series. His current disease — yes, he’s had other cancers before this — is glioblastoma. It has already subjected him to surgery in which as much of a tumor that could be safely gotten was removed from his head. Of course his head was shaved at that time. Now, several months later, it must be shaved all the time, to accommodate the newest treatment. Called Optune, it involves electrodes and a close-fitting cap. What will this be able to do for him? The most modern of medical knowledge can’t yet answer that question.
You may think it’s remarkable that this man can tell about himself and all the personal difficulties that are the continuing parts of his disease. But if so, you don’t know Jeffrey Weiss. He’s a veteran reporter, used to collecting and analyzing facts, then shaping them into stories that educate. And this is his current story. He wouldn’t treat it differently from any other — with thorough honesty. And, in this case, without making any bids for pity. News is what it is. This is his news, to write about at this time.
There’s something else you might find remarkable if you don’t know Jeff: He tells his story with an edge of humor. An aging Trekkie, he’s now taking his own trek through what he calls “The Final Frontier.” For him, it’s brain cancer.
The show, he writes, had seven seasons of airtime life. “Seven years of survival would make me a winner,” Jeff says, because the life of someone diagnosed with glioblastoma is about 15 months. He is already several months past the time of his diagnosis.
Jeff is grateful to his oncologist for the good efforts that provide him with the best chances possible. He’s grateful for his wife, who has the training, the will, and the love to care for him at home. In one of several pictures that accompanied Sunday’s story, you can see her shaving his head in preparation for yet another placement of that potentially healing cap.
Now, let’s let him also be grateful to us. Please, every one of you, send your prayers. Put Jeffrey Weiss on the mishaberach lists of all your congregations. Remember the words the late Debbie Friedman penned for her musical version of that abiding prayer: “…for renewal of body, for renewal of spirit…” Jeffrey’s body isn’t in our hands, but knowing we hope that the Force is with him will surely be good for his already remarkable spirit.
And if you haven’t yet read his whole story, everything is available online at dallasnews.com/jeffweiss.

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Sad, cruel results of Usher’s syndrome

Posted on 22 June 2017 by admin

Shakespeare calls music “the food of love.” Of course, he qualifies his statement with “if it be.”
But if he’d said something about reading, I’m sure the comment would be fully inclusive, with no “if” about it.
To read is to pan for gold, forever bringing up bright nuggets to hold (in your head, if not in your hand), to turn around and to admire. The gems found in reading are treasures beyond measure, often surfacing in the most unusual places when you least expect them.
Recently, after reading much about it, I shared here some of the golden nuggets I’d unearthed when reading about Tay-Sachs, a sad disease often connected genetically to Jews of Ashkenazic descent. And now I’m reading about another such disease: Usher syndrome.
The book that was my starting source isn’t scientific or medical; it’s a simple memoir called Not Fade Away by Rebecca Alexander, a young Jewish woman who has Usher’s — a genetic cruelty that steals from its sufferers both eyesight and hearing.
This is by no means a great book, but it certainly deserves reading because of its message. One of its reviewers wrote this about Rebecca, the “messenger”: “You never know how strong you are until being strong is the only choice you have.” We Jews already know such strength from the stories of some very different others — Holocaust survivors come quickly to mind. Now, here, we meet a fraternal twin whose brother is not afflicted as she is, learning how she has thus far successfully navigated her life path of ever-increasing loss, and continues to do so because she has no other choice.
Usher’s reveals itself in several ways. In the first, a child’s difficulties may be present and identifiable at birth. But in the third — as in Rebecca’s case — the onset is slow; because of this, and because the syndrome is rare, it is very difficult to diagnose. Her vision problems came first; the hearing loss came later — an additional, unwelcome surprise.
Rebecca’s theory on Usher’s source is straightforward: Jews with origins in areas such as Kiev — where both her father’s and mother’s families had their genesis — routinely experienced their communities’ decimation by forced military service, pogroms and similar random attacks. These resulted in a diminishing of marriageable choices, which in turn led to cousins marrying cousins. This smaller pool of suitable suitors upped the chances of those carrying “bad” genes ultimately having children together. But no one knew about genes — good or bad — in those days …
There is one member of our local Jewish community routinely encouraging us all to support the Foundation Fighting Blindness, the main organization supporting advancement of treatments for this devastating disease, because her own grandson has it, in its worst form. But thanks to modern medical science, he is on his way to an adulthood of education and accomplishment, which is what the author of Not Fade Away has already achieved.
Here’s what Rebecca Alexander tells us about her own life’s purpose: “As early as I can remember, my father instilled in us the importance of giving back to the community and to the world. There is a Hebrew word, tzedakah, that translates as ‘righteousness’ or ‘justice.’ It is generally used synonymously with ‘charity,’ but what it really means is a balancing of the scales — that charity is not an act of pity, or mercy or even necessarily goodness, but of justice. You give back to make the world a better, fairer place — when you have an abundance, you share with those who have less. This was always an idea that resonated very strongly with me …”
… as it should with us. The Foundation Fighting Blindness welcomes our interest in its ongoing efforts. Visit www.blindness.org to read all about Usher’s syndrome; then read Not Fade Away. Alexander has subtitled her story, a true “giving back” of her personal triumph over adversity, A Memoir of Senses Lost and Found.

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Seniors shouldn’t lose will, ability to stay productive

Posted on 15 June 2017 by admin

Modern medicine is working miracles in extending life expectancy. But the life experiences of three women have me wondering…
1. A local woman recently passed away at the age of 92. She had a long and distinguished career working with youngsters — she was a teacher of elementary schoolers, and the author of children’s books. Her extraordinary productivity was honed by a life of non-affluence; she had to work hard for everything she did that led to her many accomplishments. She even had to defer her second year of college and work instead to earn the money to return to school. But she did it!
However: the last few years of her long life were not productive at all; they were spent in the care facility where Alzheimer’s disease had sent her. I wondered: Even though she could no longer communicate in words or movements — could she think? And, if so — how could anyone know if — or what?
2. A woman recently called me — someone I had known well for a long time when we lived in the same city, but had seen only once since she moved away years ago. A voracious reader, she always shared her knowledge of books with others; she knew what would spark discussions in groups, what would enlighten people in classes, what would sharpen individuals’ knowledge and bring them joy.
She taught our Jewish teenagers in Sunday schools for more than half a century. But now — she is 96, with all the problems that old age can confer: Her physical mobility has waned; her hearing has virtually disappeared; her mental outlook even slid downhill to the point where she actually considered suicide. But of course she did not act on that, although she mourns her lack of productive activity more even than she would mourn her own death.
3. A woman in my old home town recently received something so simple, something most of us take for granted, something she had wanted for her entire life: a high school diploma. When she was a young child in a large family so many, many years ago, she was forced with a choice: Stay home to help out because of her mother’s illness, or continue in school. She was the good daughter who chose Option 1. But recently, at the celebration of her 105th birthday, surrounded by her grandchildren, great-grands and great-great-grands in the care facility where she lived, she finally achieved her goal: The same school district in which she had grown up presented her with an honorary diploma! Then, exactly one week later, she died.
Was this the final — maybe the only — item left on her bucket list? Was it fulfilling her life’s dream that gave her permission to say goodbye?
Old age is the growth industry of our time. Look at the number of care facilities already in operation, and the new ones being built. Reality says long lives await most of us. But within those lives, there are no guarantees. The first woman’s mind gave out long before her body. The second woman’s body has given out long before her mind. For both, productivity has come to an end. Does the first one even know that? The second one does, and the knowledge has threatened to kill her. But the third had a specific goal…
Years ago, I was privileged to hear Dr. Elizabeth Kübler-Ross speak on caring for the aged. Her stress was on productivity: “When a person is lying in bed and can move only one finger,” she said, “we must find something productive for that person to do with that one finger…”
I hope the doctors working their miracles to extend life will also think of that. If we are to live long, we must have lives of productivity in mind and/or body, or at least with the possibility of achieving long-desired goals. The cures for these ills must come soon …

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Tay-Sachs story tough, necessary read

Posted on 08 June 2017 by admin

Recently, a very special gathering was held here: The Tay-Sachs Foundation marked its 60th anniversary with a national conference at the Marriott Quorum.
So: what is Tay-Sachs? It’s a disease caused by the absence of Hexosaminidase-A (Hex-A), a vital bodily enzyme. If you have it, you’re fine. But without it, cells — particularly nerve cells of the brain and spinal cord — suffer from the pileup of a fatty substance called GM2. Most often, sooner rather than later, this will be fatal.
The condition is rare, and inherited; it occurs when a child receives a mutated gene from both parents. Death most often comes within the early months or years of life. But sometimes, those with it live to adulthood. When onset comes later, the disease’s progress is slower. But there’s a sad trade-off: This extended life is filled with physical problems including tremors, muscle cramps and slurred speech.
Tay-Sachs has been on the list of “Jewish diseases” for a long time, and potential parents have been advised to seek testing; they are then advised that if both carry the gene, they should carefully consider the odds of occurrence as they anticipate pregnancy. But I was surprised to learn that, at the recent conference, many attendees — actually most — were not Jewish. It’s now known that the disease is by no means “exclusive.” The more learning there is about genetics, the better the decisions that can be made. But for a couple with the genes, whether to have or not to have children will be a choice with potential heartbreak.
These days, you can read about Tay-Sachs in an easily accessible variety of online sources; after you do, you may want to join the Foundation in its fight against this genetic destroyer of normal life. But I think your heart will be better touched if you first read a part of a little book written by Sherri Manning, a Tay-Sachs mother who is currently president of the Foundation. She tells her story in the imagined, rhyming words of Dylan James, the son that she and husband Brian lost at age 4. She calls it If Only I Could Talk.
Manning “hears” Dylan saying this at birth: “…an angel whispered to me, ‘It’ll be OK. That’s what mommies and daddies are for…They will care for you like no other, and love you forever more. But you see, angel Dylan, you are one of us. You are very unique … God has special plans for you. Your mommy and daddy will receive the news before you turn two…that you’ll never be able to run or play hide and seek…’ ”
Here’s what might once have been called the exception that proves the rule: Neither Sherri Manning nor her husband is Jewish. However, among the Jewish attendees were two local women, good friends who are both very active in the organization’s efforts, because one lost a son when he was only 19 months old. Now — some 50 years later — she rose to speak extemporaneously before the entire audience. Many thanked her personally afterward, because they have the very personal, very sad understanding of all she went through so long ago, and had now shared so freely with them.
For those of you who want to learn more about this tragic killer and join in the fight against it, the best source is this website: www.NTSAD.org (yes — that means National Tay-Sachs and Allied Diseases! The name alone points out how very much there is yet to learn…)
Sherri Manning concludes Dylan’s story with a rhymed statement about what his too-short life has taught others: “…love, laughter, innocence, hope and compassion…” Its final words are “And so my mission, Dear Lord, is accomplished…without ever having to speak a single word.” This book is not yet available in bound form, but Dylan’s mother has secured her copyright for publication.
I hope all of us will be able to read all of it soon.

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Weiner’s criminal actions gives us all bad name

Posted on 01 June 2017 by admin

So Anthony Weiner has finally confessed to the specific behavior that will earn him a jail sentence.
Not too long ago, the former U.S. Representative stood before a judge in his home state, New York, and confessed his sexual indiscretions. Many of them. But the one that finally brought him before the bar of justice was “sexting” a 15-year-old girl in North Carolina.
I first heard this on the radio, which I always listen to in the car. Much safer than texting (although I wouldn’t be surprised if Weiner had done more than a bit of that himself). When I got home, I watched the clips on television. The next morning, I read all about it in the daily paper.
My reaction was, I suspect, exactly what that of my Boubby the Philosopher would have been: “I hope to God this man isn’t Jewish!  That would be bad for the Jews!” But of course, he is. I had pinned my hopes on learning otherwise because his first name isn’t one most folks would consider particularly Jewish. But Anthony does, indeed, belong to him. (His father’s name, for the record, is Mort.)
I have been in rehab at what used to be Legacy Preston Hollow three different times in recent years. When you’re rehabbing from broken bone surgeries and knee replacements, as I was, the routine is simple: every day you have physical therapy, and if you’re not moved by the day’s activity offerings, you stay in your room and watch a lot of TV. Other than attending Rabbi Howard Wolk’s always-interesting sessions, I mostly stayed in my room and watched a lot of TV. And I have a clear memory of seeing Anthony Weiner making public excuses for himself, vowing to do better (which meant less of what he was doing in the sex department) in the future. I’m not sure exactly when that was, but appearing with this man in disgrace was his wife — near him but a bit behind him, looking downward, as if she’d been crying her eyes out: a classic picture of Stand By Your Man. When the long-running series The Good Wife began airing on television, I wondered if that poor woman had been its inspiration.
A Bronx native, Weiner began what might have become a distinguished public service career as a Democratic congressman from New York, making his first headlines with pleas in the U.S. House urging better health care provisions for emergency responders. But his later headlines went downhill from there, a toxic mix of sex and politics. His wife, Huma Abedin (a Muslim who never took his last name) was a right-hander to Hillary Clinton, which embroiled Weiner in some other problems during the last presidential campaign. But like a “good wife,” she was long-suffering yet forgiving: The New York Post noted, sarcastically, just a couple of months ago that she kept downplaying her husband’s indiscretions: “Fool her four times and she’ll still take you back” was its published remark.
But no more. I’m certainly not going to repeat here what you can find so easily (and in full) in both online and print sources these days: to follow the trail of his dalliances, in person and in pictures, offers the same sort of sick fascination as watching a snake swallow a mouse. However, it seems that Huma is quite human, after all; she has finally filed for divorce. And Weiner, now marked with a lifetime brand of sex offender, cried as he admitted that his actions were both morally and legally wrong, but that he could not overcome his “evil inclinations.” He will be sentenced Sept. 8 — perhaps to 10 years in prison.
Full disclosure here: One of my nieces is a senior attorney in New York’s Southern Federal District, where Weiner will be learning his fate. I have not asked her any questions about this.
She would not have answered them, anyway…

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