Thursday, December 22, 2016

Grandpa Ralph, Family Humorist




Grandpa Ralph was known in his earlier years for creating grammen and satirical presentations for family occasions.

On one of those occasions, in 1979, he created a "last chapter" for the book, "The Warburgs," by David Farrer (1975) (written about "the other Warburgs"). He entitled his pseudo-chapter "The Uptown Warburgs," and inserted it inside the book, so that it looked as if he were really reading from the book during his performance.


Chapter 22: the Uptown Warburgs

In the late 1930s, a new branch of the Warburg family arrived in the United States. If someone would question a member of this family whether they were related to the Warburg banking family, the glib answer would probably be, "Yes, there is supposed to be only one Warburg family, they are our poor relatives." A member of the Midtown and Wall Street branch of the family, when confronted with this remark, replied somewhat coolly, "No comment." But it seems that relations between the two branches have been cordial, although contact has been sporadic over they years.

The first-born of the Uptown Warburgs, whose original name was Hans, later changed to Joseph H., arrived in the United States first, with lots of clothing, a camera, and little else. One of the Wall Street Warburgs had provided the affidavit required for his immigration to the U.S.

Joseph was to be a pioneer for the family - he established himself and then the rest of the family was to follow. Joseph's younger brother Rudi, who showed independence at an early age and changed his name to Rolf without asking anyone, came to the United States less than a year later and again changed his name to Ralph M. No information is available on what the M stands for.

Ralph moved in with Joseph H. and soon decided to change a few things. First, there was an immediate change in the breakfast menu. Ralph was dissatisfied with tea only and insisted on changing to coffee, although this entailed an additional expense because the purchase of milk now became a necessity at 8 cents per quart. The next thing Ralph objected to was the living quarters because of a lack of light and air. Joseph H. was finally persuaded to move five streets uptown and closer to Central Park West, to a luxurious one-room apartment in a brownstone, with it's own kitchenette.

Ralph excelled at preparing frankfurters and baked beans and made them nearly every day, of which Joseph H. soon tired.

The two brothers showed evidence of their entrepreneurial acumen early on. They teamed up with a friend, and because they were now three solid customers, they managed to convince a hapless restaurateur in the neighborhood to reduce the price of their seven course dinner from 45 cents to 40 cents each.

Joseph H. was now a very eligible bachelor, and played the field extensively. He established two firm guidelines for himself: 1. To date at least two young females at a time, to establish that he was independent and not really serious. 2. To eliminate what Joseph H. called "G.U." - geographically undesirables. Any candidate had to live in Manhttan or The Bronx.

By this strategy, especially adhering to principle #1, Joseph H. continued as an eligible bachelor for quite a few years.

When the brothers' parents arrived, the family moved further uptown to a luxury apartment on Audobon Ave. and 185th St. As the reader may surmise by now, there seemed to be an urge to move farther and farther uptown. This is why the writer chose the term "The Uptown Warburgs" for this family.

Joseph H. was soon informed by the family that he was at an age when he ought to begin to think seriously of estalishing a permanent relationship with someone suitable of the female gender. Thus urged on, Joseph H. produced a lovely young lady of charm, intelligence and the best of upbringings, by the name of Ilse Bravmann. The family immediately took to Ilse and invited her for dinner at the Warburgs.

One episode connected with this dinner has been kept secret within the family for many years. However, a personal interview with one of the dinner paricipants who chose to remain anonymous, elicited the story of a crisis in the Uptown Warburg household.

Ilse charmed everyone with her wit, intelligence and perfect table manners, especially the latter, which always were deemed to be of supreme importance by this family. That is, all through dinner, until a dessert of pudding with strawberries was served. As is customary in the Uptown Warburg home, the invited guest was served first. It seems that all the strawberries had descended to the bottom of the bowl, but this did not deter Ilse. While the family was looking on with deepening anguish and despair, Ilse deftly pushed aside the pudding, with a proper serving spoon, of course, and managed to retrieve most of the strawberries for herself. The informant added, however, that to Ilse's credit, she did leave at least one strawberry for each of the other diners.

The dinner conversation is alleged to have become somewhat strained after this occurrence.

The family council convened the next day to discuss the matter. After a somewhat heated debate, it was decided to bestow the family's approval on Ilse, after all, but a resolution was passed that a different serving order would be followed at future dinners to prevent a recurrence of this near crisis.

In the middle of Joseph H's distinguished career in the United States Army, in November of 1944, Joseph H. and Ilse became husband and wife with the blessings of both the Bravmann and Warburg families.

No information is available about brother Ralph's social activities during those years. All members of the family have consistently declined comment.

However, he did manage to start a hardware manufacturing business shortly after the Bravmann-Warburg wedding. Of course, Ralph started in the style he was accustomed to, in one of the most modern industrial buildings of the decade, on Center Street. It seems that the late model coal-burning stove and the high-speed elevator were especially noteworthy. By the ingenious method of pulling a rope, it was possible to move the "elevator" up three floors in less than an hour.

Ilse ingratiated herself with her brother-in-law by sending a plant in a ceramic camel planter for the grand opening of this major industrial establishment. (This camel is still on display at the brothers' new Englewood plant.) Thereupon, Ralph invited Ilse for a visit to his opulent office. In order to let Ilse inside the office, Ralph had to get up and move his chair out of the way. Ilse was so impressed with all this splendor, that she decided to join the firm as soon as possible, which she eventually did, and has not left her post to this day.

To Ralph's dismay, because of the shortage of office space occasioned by the presence of Ilse, his penchant for hiring a young, single and "interesting" private secretary was squelched.

In 1946, Joseph H. completed his earlier mentioned distinguished career in the military service of the United States. He had probably planned some years earlier what was to follow.

In a typical takeover maneuver, which became commonplace only in the 60s and 70s, he had first conspired to install his wife and probable accomplice in the inner circle of the business. Then he moved in for the kill. Within two weeks, Joseph H. had acquired 50% of the shares of this now allegedly tremendous industrial enterprise which now occupied two whole floors of unknown size.

So much for the business venture of the Uptown Warburgs, except for the fact that Ralph is now vastly outnumbered because Joseph H's oldest son Ronald has entered the firm and is speedily climbing up the corporate ladder.

Joseph H. is reported to have become so prosperous that his main occupation in the firm consists now of engineering a fail-proof burglar alarm system to protect his assets. He is also a reknowned expert on all kinds of electronic gadgets and owns a vast and invaluable collection of calculators, short and long wave transistor radios, and alarms.

Joseph H. has developed a habit of disappearing for long vacations without notifying employees of the firm. This keeps the employees in constant fear of having Joseph H. reappear unexpectedly. A postcard from wherever Joseph and Ilse are vacationing will usually arrive a day or two after Joseph's return, which is of little solace to the firm's workers.

Ilse and Joe have moved even further uptown and north, beyond the confines of New York City, all the way north to Rockland County, where they live in great splendor surrounded by whispering pines and birches.

Ilse became a noted interior decorator and is constantly besieged by friends and acquaintances from far away for advice on their home decoration problems, which advice Ilse graciously despenses.

Joseph H. has become the "Kissinger behind the scenes" for the Jewish community. (note - Kissinger is another landsman from Nuremberg. DW) Joseph H.'s favorite remark is reported to be, "Don't make waves," when he is approached by anxious citizens regarding a crisis in community affars.

Ilse has developed a penchant for giving large and elaborate parties, and, according to local gossip, likes to "invite the whole world." She has a widespread reputation for her culinary capabilites.

This is also true of Ralph's wife Anita, who is the only Yankee in the family. When guests admire her dishes and ask for her recipe, she will invariably respond that they are from the "Moriah Cookbook," of which she is the editor-in-chief. Inevitably, two or three of her guests will purchase the cookbooks. At a price of $6.95 per cookbook, Ralph is often heard to mutter that it hardly paid to invite 20 or 30 or 50 people just to sell a few cookbooks.

Again, little is known about brother Ralph's activities, except that he seems to fancy himself to be the humorist of the Uptown Warburgs. His humor is so appealing, it is reported that every time he gives out with one of his rare puns or "jokes" at the dinner table, his children exclaim in anguish, "Oh, Daddy!"

It seems that he comes up once about every 6 years with one of his supposedy funny productions at some family affair. He claims that he has his audiences glued to their seats on these occasions, but none of the glues have really worked in the past. According to local sources, he has perfected a new kind of quadruple glue that really will hold his audience spell- and seat-bound. He just never gives up.

Since the scope of this book is necessarily limited, the writer will have to dispense with a detailed account of the two new generations of the Uptown Warburgs that have appeared in the 40s. 50s, 60s, and 70s. Although it would be well worthwhile to do so, at this point in time, the writer will leave this to an additional chapter to be added to this book about the Warburgs at a later date.

Just before the editor's deadline approached for this chapter, the writer was advised by reliable sources that Joseph H's and Ilse's children have conspired to hold a huge party in honor of their 35th anniversary at the home of their first-born son and his very lovely wife, Resa. Purportedly, Resa decided to match or surpass her mother-in-law's vast entertainmant endeavors. It is also rumored that Ralph will again be on hand with one of his "hilarious" productions. "The worst is expected," a family member confided glumly.

Since this writer has become so deeply involved with the fame and fortunes of the Warburgs, it semed appropriate to close this chapter by wishing Ilse and Joseph H. a very happy 35th anniversary and many happy and healthy years together with their whole family.

Postscript: The writer was informed that a special, valuable gift will be presented to Ilse for her exclusive use by one of Ralph's offspring. (I think that was me and the gift was a hand-calligraphed Ayshet Chayil - DW)











The Other Warburgs




Over the years, I have often been asked if we're related to the famous Warburgs.

When we were children, we were told that all Warburgs were related. Later on, a member of our Warburg family did some genealogical research and determined that we are not related to them.

In any event, we are connected to them by the fact that members of their family provided the affidavit for a member of our family, Uncle Joe, when he emigrated from Germany in the late 1930's. An affidavit of support is a document an individual signs to accept financial responsibility for another person, usually a relative, who is coming to the United States to live permanently.

Note from cousin Ronnie Warburg:
Your father's uncle claimed that we were related to the famous Warburgs.
However, approximately 10 to 15 years ago, I went to the Jewish Museum and on that evening the famous Warburgs who now hail from Westport, Conn. were present and were signing the newly acclaimed book, The Warburgs, by Ron Chernow. I spoke with some of them, and I didn't get the impression that we were related.
At this point, I accept what cousin Herbert Warburg shows in our family tree- there were 3 Warburg families who took the name from a town called Warburg. None of them are related to each other- Our original name was Hirsch.

Here's Wikipedias' take on "the other Warburgs."

The Warburg family is a prominent American banking family of German Jewish descent, noted for their varied accomplishments in biochemistry, botany, political activism, economics, investment banking, law, physics, classical music, art history, pharmacology, physiology, finance, private equity and philanthropy.

They originated as the Venetian Jewish del Banco family, one of the wealthiest Venetian families in the early 16th century. Following restrictions imposed on banking and the Jewish community, they fled to Bologna, and thence to Warburg, in Germany, in the 16th century, after which they took their name.

The family re-established itself in Altona, near Hamburg in the 17th century, and it was there that M. M. Warburg & Co. was established in 1798, among the oldest still existing investment banks in the world. Other banks created by members of the family include: M.M.Warburg & Co., Warburg Pincus, S. G. Warburg & Co. (becoming UBS Warburg).

Noteworthy members

Felix M. Warburg



From Wikipedia, the free encyclopedia
Felix Moritz Warburg (14 January 1871 – 20 September 1937) was a German-born American banker. He was a member of the Warburg banking family of Hamburg, Germany.
Warburg was an important leader of the American Jewish Joint Distribution Committee, established to help the Jews in Europe in the period leading up to, and especially during, the Great Depression. Warburg actively raised funds in the United States on behalf of European Jews who faced hunger following World War I. As early as 1919, he was quoted in the New York Times discussing the dire situation of Jewish war sufferers.
As a result of his philanthropic activities, a new Jewish village established in Mandate Palestine in 1939, Kfar Warburg, was named after him. He was a trustee of the Jewish Theological Seminary in New York.


The Felix M. Warburg House, in New York's Upper East side was donated by his widow and today houses the Jewish Museum.
By Gryffindorderivative work: Fpo (talk) - Felix_Warburg_Mansion_006.JPGFelix_Warburg_Mansion_007.JPG, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=10490753


American Museum of Natural History - The Felix M. Warburg Hall of New York State Environment focuses on the village of Pine Plains and Stissing Mountain in New York’s Dutchess County, an area that includes mountains, natural lakes, forests, rock formations, and both wild and cultivated land. The hall’s exhibits highlight the changes in the landscape since Precambrian times, its seasonal and natural cycles, and its plant and animal life.
Cutaway views of the mountain and terrain, along with fossils, mineral specimens, and topographical maps, illustrate the geologic history of the area. Another series of exhibits describes the role of agriculture on the local ecology, with displays about crop rotation, the management of an apple orchard, natural fertilizers in the soil, and the cycles of nutrition and decay. Dioramas also showcase forest and wetland ecosystems.
An exhibit about life in the soil depicts animals living below ground in a farmer’s lawn and at the edge of woodland, with views of tunnels, nests, and burrows used by moles, chipmunks, mice, yellowjackets, Japanese beetle larvae, ants, and earthworms.
Hall Location


Paul Warburg


From Wikipedia, the free encyclopedia

Paul Moritz Warburg (August 10, 1868 – January 24, 1932) was a Jewish German-born American banker, and an early advocate of the U.S. Federal Reserve System.
The cartoon character, Oliver "Daddy" Warbucks in the Little Orphan Annie series, was purportedly inspired by Warburg's life and times.

Otto Heinrich Warburg



From Wikipedia, the free encyclopedia
Otto Heinrich Warburg (/ˈvɑːrbʊərɡ/; 8 October 1883 – 1 August 1970), son of physicist Emil Warburg, was a German physiologist, medical doctor and Nobel laureate. He served as an officer in the elite Uhlan (cavalry regiment) during the First World War, and was awarded the Iron Cross (1st Class) for bravery. Warburg is considered one of the 20th century's leading biochemists. He was the sole recipient of the Nobel Prize in Physiology or Medicine in 1931. In total, he was nominated for the award 47 times over the course of his career.
Cancer hypothesis (Warburg hypothesis)
Warburg hypothesized that cancer growth is caused by tumor cells generating energy (as e.g. adenosine triphosphate / ATP) mainly by anaerobic breakdown of glucose (known as fermentation, or anaerobic respiration). This is in contrast to healthy cells, which mainly generate energy from oxidative breakdown of pyruvate. Pyruvate is an end product of glycolysis, and is oxidized within the mitochondria. Hence, and according to Warburg, cancer should be interpreted as a mitochondrial dysfunction.
"Cancer, above all other diseases, has countless secondary causes. But, even for cancer, there is only one prime cause. Summarized in a few words, the prime cause of cancer is the replacement of the respiration of oxygen in normal body cells by a fermentation of sugar."
— Otto H. Warburg
Warburg continued to develop the hypothesis experimentally, and gave several prominent lectures outlining the theory and the data.
Today, mutations in oncogenes and tumor suppressor genes are thought to be responsible for malignant transformation, and the metabolic changes are considered to be a result of these mutations rather than a cause.
Survival under the Nazis
When the Nazis came to power, people of Jewish descent were forced from their professional positions. However, the Nazis were hypocritical in their implementation of this policy, looking the other way in some cases where they could use Jewish scientists to advance the technology of the Reich. Despite having a Jewish father, Warburg was spared. By this time Warburg was studying cancer. Although banned from teaching, he was allowed to carry on his research.
In 1935, Hitler had a polyp removed from his vocal cords. It is believed that afterwards, he feared that could develop cancer, which may have allowed Warburg to survive. In 1941, Warburg lost his post briefly when he made critical remarks about the regime, but a few weeks later a personal order from Hitler's Chancellery ordered him to resume work on his cancer research. Göring also arranged for him to be classified as one-quarter Jewish.
According to the Reichsbürgergesetz from 1935 (cf. Nuremberg Laws) Warburg was considered by the Nazis a half-Jew (Halbjude) resp. Mischling and in September 1942 he issued an official request for equal status ("Gleichstellung") with Germans which was granted.
It is believed that Warburg was so totally dedicated to his work that he was prepared not only to stay in Germany but also to accept the Nazi treatment of his Jewish colleagues and his Jewish relatives. This was despite him having received an offer from the Rockefeller Foundation to continue to fund his work if he emigrated. After the end of the Second World War he made inquires about moving to the United States of America, but his approach was turned down.
In 1943 Warburg relocated his laboratory to the village of Liebenburg on the outskirts of Berlin to avoid ongoing air attacks.

Otto Warburg (botanist)



From Wikipedia, the free encyclopedia
Not to be confused with Otto Heinrich Warburg, a distant cousin, Nobel Prize Laureate, namesake of the Warburg effect.

Otto Warburg (20 July 1859 – 10 January 1938), was a German botanist. He was also a notable industrial agriculture expert, as well as an active member of the Zionist Organization (ZO). From 1911–21, he served as the president of the ZO, which among other things, sought 'for the Jewish people a publicly and legally assured home in Palestine."

Other notable members of the Warburg family:

Moses Marcus Warburg (1763–1830), founder, with his brother Gerson Warburg (1765–1825), of M. M. Warburg & Co. in 1798.
Sara Warburg (1805–1884) married to Abraham Samuel Warburg (1798–1856), her cousin[9]
Rosa Warburg (1833–1908), married to Paul Schiff, director of the Creditanstalt of Vienna
Siegmund Warburg (1835–1889), married to Théophilie Rosenberg
Abraham Samuel Warburg (1864–1933)
Georg Gabriel Warburg (1871–1923)
Siegmund George Warburg (1902–1982), founder of S. G. Warburg & Co, London
Moritz M. Warburg (1838–1910), married to Charlotte Oppenheim
Abraham M. Warburg (1866–1929), German art historian
Max M. Warburg (1867–1946), banker
Eric M. Warburg (1900–1990), founder of Warburg Pincus, married to Dorothea Thorsch
Max Warburg
Marie Warburg, married to Michael Naumann (1941–), journalist
Paul M. Warburg (1868–1932), father of the Federal Reserve, married Nina Loeb (1863–1912) in 1895, the daughter of Solomon Loeb
James Warburg (1897–1969), economist, banker, advisor to Franklin D. Roosevelt, married to Kay Swift (1897–1993)
Andrea Swift Warburg, married to Sidney Kaufman
Katharine Kaufman Weber (1955–), novelist, married to Nicholas Fox Weber.
Katharine Warburg (1870–1935), married to Isaac Dorfman (1868–1929), philanthropist, banker.
Felix M. Warburg (1871–1937), New York banker with Kuhn, Loeb & Co., philanthropist, married Frieda Schiff (1876–1958), daughter of Jacob H. Schiff, in 1895.
Gerald Felix Warburg, well-known cellist and conductor, married Natica Nast (1905–1987), daughter of Condé Nast
Edward Warburg (1908–1992), philanthropist and benefactor of the arts.
David M. Warburg, lawyer, partner at Seyfarth Shaw.[10]
Ian Warburg, married to Jane Green (1968–) author, philanthropist.
Olga Warburg (1872–1895)
Fritz M. Warburg (1879–1962) living in Stockholm during World War I and II, father of Eva Warburg who organized Kindertransport to Sweden in 1938 and -39.
Louisa Warburg (1879–1973), married to Julius Derenberg (1873–1928)
Walter Julius Derenberg (1903–1975), legal scholar







Grammen




Grammen are ditties sung to a particular tune, usually on Purim. Here's a random example that I found on youtube.





In our family, grammen are also sung at family celebrations, such as Bar Mitzvahs, and may be set to many different tunes. Are they still really grammen sans the holiday and tune? I don't really know, but that's what we called them.

Grandpa Ralph used to be the official composer of the lyrics, but I have been in charge for a while now.

This one is engraved in my memory. At the time that I performed it along with Lennie and Karen, we were 10, 6, and 4 years old.

Written by Grandpa Ralph, we sang it at cousin David Warburg's Bar Mitzva in 1966 to the tune of "Erev Shel Shoshanim."

Debbie:
I am Debra Sue
I'm known to most of you
At Ronnie's Bar Mitzva there was only me
Now we are three

Lennie:
Lennie Mark is my name
I have one claim to fame
On Ronnie's Bar Mitzva I was born
Early on that Shabbos morn

Karen:
I am Karen Ann
I'm the youngest of the clan
I'm four years old and a mazik I am told
A mazik I am told

Refrain:
We're happy to be here
to wish David good cheer
Mazal tov and bracha
to the whole mishpacha

All:
David was a model child
but some mothers though him wild
when he came strolling down the street
all the mothers yelled, "Retreat!"


There were some other verses about David, the Bar Mitzva boy, but I can't remember them, except that one ended with the notable phrase:
"and stuffed one up his nose."


This is actually cousin Ronnie's Bar Mitzvah (please note that it confirms my verse in the song - of the three siblings in my family,there was only me!), but I haven't any picture from David's.


Would you repeat that, please?


Hearing loss runs in our family on both sides, so it didn't come as a surprise when, around the time I turned 50, my children started complaining about my not responding to their attempts to verbally attract my attention. Hearing tests showed some loss, but not enough to have me considered eligible for a hearing aid. Then, at age 55, after repeated testing, I did qualify.


Although I was willing to do whatever was necessary to improve my hearing, I was happy to find that I needed the smallest kind of hearing aid that fits inside my ear and is not noticeable unless you are looking for it, pictured on the far right in the above image.

I have equal hearing loss in both ears, so I now wear 2 hearing aids.

It's nice to be able to participate in conversations without straining to hear or playing a guessing game - I usually hear vowels sounds but not consonants without the hearing aids, and sometimes I had to fill in the blanks.

At times, the guessing game could be amusing, but it was more likely to be frustrating. I would hear something like, "Please don't make it snow!" in the middle of the summer, and think, "OK, what sounds sort of like that, but makes sense?" It turned out that my workmate was saying, "I think it's time to go!"

The hearing aids only help in certain situations. If I am in a quiet room with one person who is speaking sufficently loudly and enunciating their words, I can often hear them without the hearing aids. On the other hand, it does help with mumblers, a lot of whom seem to attend my afterschool art classes for children. If there is a lot of noise in the background, everything is amplified, and the hearing aids don't help me single out the speech parts of the general noise.

The first time I wore the hearing aids, I was on a bus, going home from the hearing aid lab. I was surprised to be able to very clearly eavesdrop on a conversation going on at the opposite end of the bus. I also heard the bus' mechanical noises very clearly.

My hearing aids are digital and can and have been adjusted to accommodate these issues somewhat, but, so far, background noise is still a problam. I may need some more adjustments.

I enjoy hearing the birds tweet nice and loudly, but hearing myself swallow and brush my hair, not so much.

My hearing aids are subsidized by my Kupat Cholim, but I was told that had I been of retirement age when I got them, I would have paid even less, about half of what I paid. Now, I understand why it makes sense to give pensioners a discount, but from my point of view, it felt like I was being punished for having lost my hearing at a younger age.

If you live in the Jerusalem area and need hearing aids, I highly recommend Ozen Kashevet and their technician, Leonid. He is both a mensch and good at his job.

Ozen Kashevet
6 Ben Maimon Blvd.
Jerusalem 92261
Israel
+972 2-566-6640




Wednesday, December 21, 2016

Thank you, Dr. Heimlich! (1920-2016)

or
The time that Yishai choked








When Yishai was about 18 months old, I laid him down on the changing table one day to change his diaper, and heard a click in his throat. His eyes went wide with fear. I realized that he knew that he was in trouble, and that there was something stuck in his throat.

I followed what I had learned about the Heimlich Maneuver for toddlers as well as I could remember, holding him vertically with his head down and his feet up (he should have been more on a slant), and gave him a whack on the back. A 10 agora coin came flying out.

I then sat and trembled for what seemed like a long time, but probably wasn't.

Thank God, Yishai was fine.

So, thank you Dr. Heimlich for the invaluable lifesaving technique that you gave to the world!




Saturday, December 10, 2016

My big fat botched gall bladder surgery

or
The three times that I could have died



If you've read my previous posts to this blog, especially Remembering Simcha and Tzvi and Yaakov's Journey, you may be thinking, "C'mon, another medical debacle? How many things like this can happen to the same family?" Well, I assure you that they did and I have the scars to prove it. It's one of those examples of truth being stranger than fiction.

And I think that with this post, barring unforeseen circumstances, I'll have covered the subject of family medical dramas.



The first time that I could have died (1976) occurred about a year after my preemie twins were born and died (see post Remembering Simcha and Tzvi).

I went to the emergency room on Shabbat Shuva with severe abdominal pain, and was diagnosed with a urinary tract infecion and sent home with antibiotics.

Then, on Erev Sukkot, while at work, I again experienced severe pain and an ambulance was called to take me to the emergency room. By the time the ambulance arrived, I experienced temporary blindness - I could hear what was going on around me, but my visual field was completely black. It lasted at least a couple of hours, or until I was under general anaesthesia, and was extremely frightening.

I have never been given a satisfactory explanation for the loss of vision by a medical professional, but this is my lay self-diagnosis:

Conversion Disorder
Wikipedia
Conversion disorder begins with some stressor, trauma, or psychological distress. Usually the physical symptoms of the syndrome affect the senses or movement. Common symptoms include blindness, partial or total paralysis, inability to speak, deafness, numbness, difficulty swallowing, incontinence, balance problems, seizures, tremors, and difficulty walking.


The surgeons opened me up not knowing what they were going to find, but it turned out that I had an ectopic prenancy, with the fetus growing in a fallopian tube, which had to be excised, as continuing growth of a fetus outside of the uterus can kill the mother.

Thankfully, when I awakened from the surgery, my vision was totally restored.

A short while later, a friend told me that his sister-in-law had experienced the same symptoms on Erev Pesach. Not wanting to worry anyone, and intent on finishing her Pesach cleaning, she told no one of her pain and was found dead on the floor.

The second time that I could have died is described below.

The third time occurred about 3 years ago (2013), when my blood glucose level climbed to 565.

The doctor at the emergency care center told me that most patients with such a high glucose level come in to them in a coma. If I had fallen into a coma, it might not have been discovered for quite a while, as I was alone at the time.



The second time I could have died (1996)

After weeks of intense pain, I was diagnosed with an inflamed gall bladder and gall stones.

I was the stereotypical gall bladder patient: female, forty, fat, and fecund.

I underwent laparoscopic gall bladder surgery at Shaarei Zedek Medical Center, and when I woke up from the surgery, everything seemed fine at first. I felt as good as I expected to a few hours postsurgery. However, when the nurses checked the drainage tubes in my abdomen, they became concerned. Apparently, bile was filling one of the tubes, and it wasn't supposed to.

The surgery had taken place in the morning, and mid-afternoon, the surgeons breezed into the room and asked the half-dozen or so visitors in the room, who were there for the patient in the bed next to me, to please leave, because they had something important to talk about to the Walks. They then proceeded to tell us that there had been a complication in the surgery and that I would have to have an additional surgery done, this time conventional (roux en y hepatic jejunostomy). An expert on the procedure that was to be done was being flown in and the surgery would take place at midnight. It was rather dramatic...

What they didn't tell me was that what they referred to as a complication was actually a surgical error. They had mistakenly cut the wrong duct.

While laparoscopic surgery has a fairly short recovery time, usually about a week, this surgery took me about a year to recover from, and I'm not sure I ever got back to the energy level I had had before the surgery. I was left with a Y-shaped scar impressive enough that if I ever have imaging done of my abdomen, it elicits quite a reaction in the imaging technician.

I've been asked if I considered suing the surgeons. I did, briefly, but eventually decided not to take any action in that direction.

Let me explain why with the help of an excerpt from the book, "Complications: A Surgeon's Notes on an Imperfect Science," by surgeon and author Atul Gawande.

"Today we've learned to take out gallbladders with a miniature camera and instruments that we manipulate through tiny incisions. The operation, often done as day surgery, is known as laparoscopic cholecystectomy, or "lap chole." Half a million Americans a year now have their gallbladders removed this way...

Removing the gallbladder is fairly straightforward. You sever it from its stalk and from its blood supply, and pull the rubbery sac out of the abdomen through the incision near the belly button...There's one looming danger, though: the stalk of the gallbladder is a branch off the liver's only conduit for sending bile to the intestines for the digestion of fats. And if you accidentaly injure this main bile duct, the bile backs up and starts to destroy the liver. Between 10 to 20 percent of the paients to whom this happens will die. And the survivors often have permanent liver damage and can go on to require liver transplantation. According to a textbook, "Injuries to the main bile duct are nearly always the result of misadventure during operation and are therefore a serious reproach to the surgical profession." It is a true surgical error, and, like any surgical team doing a lap chole, we were intent on avoiding this mistake...

Using a dissecting instrument, I carefully stripped off the fibrous white tissue and yellow fat overlying and concealing the gallbladder. Now we could see its broad neck and the short stretch where it narrowed down to a duct, a tube no thicker than a daisy stem peeking out from the surrounding tissue, but magnified on the screen to the size of major plumbing. Then, just to be absolutely sure that we were looking at the gallbladder duct and not the main bile duct, I stripped away some more of the surrounding tissue. The attending and I stopped at this point, as we always do, and discussed the anatomy. The neck of the gall bladder led straight into the tube we were eyeing. So it had to be the right duct. We had exposed a good length of it without a sign of the main bile duct. Everything looked perfect, we agreed. "Go for it," the attending said...

I got the jaws around the duct and was about to fire when my eye caught, on the screen, a little globule of fat lying on top of the duct. That wasn't necessarily unusual, but somehow it didn't look right. With the tip of a clip applier, I tried to flick it aside, but instead of a little globule, a whole layer of thin unseen tissue came up, and underneath, we saw that the duct had a fork in it. My heart dropped. If not for that little extra fastidiousness, I would have clipped off the main bile duct.

Here was the paradox of error in medicine. With meticulous and assiduous efforts to ensure that they have correctly identified the anatomy, surgeons need never cut the main bile duct. It is the paradigm of an avoidable error. At the same time, studies show that even highly experienced surgeons inflict this terrible injury about once in every two humdred lap choles. To put it another way, I may have averted disaster this time, but a statistician would say that, no matter how hard I tried, I was almost certain to make this error at least once in the course of my career..."


Human beings make mistakes. I don't believe that surgeons should be punished for being human. Perhaps if I had suffered serious injuries, I would feel differently.

Interesting side note:
This was one of two instances in our family in which family members experienced medical issues that seem related to the person after whom they were named.

My paternal grandmother, after whom I am named, died from complications of gall bladder surgery.

My father-in-law, after whom Yaakov is named, died from a complication of diabetes, namely an abscess that was located next to the same cranial nerve that housed my son Yaakov's tumor, and he had some similar symptoms: hoarse voice and a partially closed eyelid.

I have no idea what to make of this.




Wednesday, December 7, 2016

Our angel, Vicky





Vicky was the first in a string of angels sent to care for Mom and Dad. She took care of Mom for 15 years.

Vicky was originally hired as a housekeeper.

A multigenerational clan of gardeners has cared for mom and dad's lawn since we moved to Englewood in 1961. One day in around the year 2001, Mom opened the front door and called out to the gardener working outside, "Hey, do you know anyone looking for a housekeeping job?" The gardener said that he'd send over his cousin, Vicky.

Vicky began working for Mom and Dad as a housekeeper, and as mom's illness progressed, Vicky morphed from housekeeper into Mom's companion, and later into her caregiver.

Vicky told me early on that she thought of how she'd want someone to care for her mother and that's how she treated Mom, and she meant it. I never heard her lift her voice to Mom, even when things were very difficult. Everything Vicky did, she did with love and utmost respect.

I don't know if you'll ever see this Vicky, but we love you!

One funny note:
Vicky had a boyfriend named George Washington and Mom thought that it was absolutely hilarious. Whenever his name came up in conversation, Mom would burst into uncontrollable laughter. That may very well be what was happening when the above picture was taken.


Tuesday, December 6, 2016

Remembering Simcha and Zvi





Sometimes I share very personal stories, and I, and perhaps others, wonder why I am doing so. Truthfully, I just feel compelled to do it.

And then, inevitably, I am contacted privately by someone who had a similar experience and a bond between us is created. Hence my motto, "Keeping secrets separates people and sharing experiences connects people."


Remembering Simcha and Zvi, who were born and died in February, 1976

They were born when I was 19 years old, in the 27th week of pregnancy, during our first year of marriage. They each weighed about 2 1/2 lbs.

It was in the early days of ultrasound, and mine did not reveal that I was carrying twins. Only after Simcha was born, did the doctor say, "Wait a minute, there's another one!" and Zvi emerged.

For years after that, I had dreams in which the doctor repeated this sentence over and over until I had given birth to 6 babies. They looked like newborn mice and I carried them around in a shoe box.

We were visiting my in-laws in Malden, Massachusetts when I went into labor. I gave birth in Malden General Hospital, but the twins were soon transferred to Massachusetts General Hospital, which had a better NICU.

The NICU staff recommended that we give the twins names right away, as it helped their caregivers to bond with them. The local rabbi also encouraged this so that they could be better prayed for. We named then after two of their great grandfathers.

After 3 days, Zvi suffered a cerebral hemorrhage; he was brain dead. At the time, he was on a respirator, which was set at a very high oxygen level.

The topic of euthanasia was raised by the medical staff, and we appeared before the medical ethics committee of Harvard University Medical School, with which the hospital is affiliated. The committee consisted of 3 religious leaders: one Christian, one Jewish and one Moslem. We also consulted with our own rabbis.

It was decided that, although active euthanasia was not permitted by Halakha (Jewish law), passive euthanasia was. So, no new treatment was initiated, and Zvi was allowed to die. He died 5 agonizing days later, when he was 8 days old.

Meanwhile, Simcha was doing quite well. Although he was on a respirator, the oxygen levels provided by the machine had been gradually reduced as his condition improved, until the doctors decided that he could be taken off the machine entirely. The doctors recommended that we begin searching for a doctor who could accompany us on a plane trip back to New York, where we lived.

However, Simcha was unable to maintain independent breathing, and tests revealed that he had patent ductus arteriosis, a condition in which a duct in the heart that is open in utero, and usually closes up after birth, does not close. It is common in preemies.

Surgery was needed to close the duct. The doctors reassured us that they had never had a patient die as a result of the surgery. Apparently, Simcha was the first. He was 15 days old when he died.

The twins were buried in the cemetery in Massachusetts where my father-in-law was interred. There were no funeral, Shiva, or matzeva (tombstone), according to the custom for babies who live less than 30 days.*

The twins' father dealt with the loss by never mentioning them again, and requesting that I not mention them to him. He wanted to forget.

I needed to talk, but was discouraged from getting professional help. Life just went on, almost as if Simcha and Zvi had never existed, except in my mind, where I relived those 15 days, over and over.



Time passed. We went on to have 6 live, healthy children, B"H.

As time went on, the pain, trauma, and sense of loss lessened until I rarely thought of the twins at all.



One day, about 25 years later, I was watching a talk show in which one of the guests in the audience spoke of her infant son, who had only lived one day, saying that sometimes, in the middle of the night, when everyone was sleeping, the electronic toys in the house would suddenly turn on and make noise or move around. She believed that it was her dead baby's soul communicating with her.

Moments later, the smoke alarm outside the room that I was in started blaring. There was no smoke or fire and the battery was working, so that there was no obvious reason for the alarm to be sounding. I felt as if my babies' souls were calling to me. I heard them telling me that they were sad that I never thought of them.

I had only been to their unmarked grave site once, just before we made aliyah in 1983, as my father's German Jewish custom was that children do not visit cemeteries while their parents are still alive. At the time, I had no idea that I would travel back and forth fairly frequently between Israel and the US, and I was afraid that I might never see their burial site.

I asked my father for permission to go to the cemetery, and he granted it. After I went, I was able to keep an image in my mind of where they were buried. I found this to be a comfort.

Now, twenty some years later, I decided to visit them again. When I did, I felt that the souls of my boys were happy that I had come, and they "told me" that they would always be with me.

Later on, I was told by a Mekubal (Kabbalist), that the fact that they lived 8 days (7 + 1) and 15 days (7 + 7 + 1), was a sign that they were not one of the 7 reincarnations that exist within his understanding of gilgul neshamot (reincarnation), but rather angels, a different entity.

Today, at significant moments, I feel Zvi and Simcha standing by my side, like 2 guardian angels. And I feel their pleasure when ever I think of them.



* I understand that today, this custom is being challenged. I wish we had challenged it; it would have helped me to heal.

See "To Mourn a Child: Jewish Responses to Neonatal and Childhood Death," Edited by Jeffrey Saks and Joel B. Wolowelsky, OU Press, 2013







What the dead think of us



From Wikipedia
A chevra kadisha (Hevra kadishah) (Aramaic: חֶבְרָה קַדִישָא, Ḥebh'ra Qaddisha "holy society") is an organization of Jewish men and women who see to it that the bodies of deceased Jews are prepared for burial according to Jewish tradition and are protected from desecration, willful or not, until burial. Two of the main requirements are the showing of proper respect for a corpse, and the ritual cleansing of the body and subsequent dressing for burial. It is usually referred to as a burial society in English.

The task of the chevra kadisha is considered a laudable one, as tending to the dead is a favour that the recipient cannot return, making it devoid of ulterior motives. Its work is therefore referred to as a chesed shel emet (Hebrew: חסד של אמת, "a good deed of truth"), paraphrased from Genesis 47:30 (where Jacob asks his son Joseph, "do me a 'true' favor" and Joseph promises his father to bury him in the burial place of his ancestors).

At the heart of the society's function is the ritual of tahara, or purification. The body is first thoroughly cleansed of dirt, body fluids and solids, and anything else that may be on the skin, and then it is ritually purified by immersion in, or a continuous flow of, water from the head over the entire body. Tahara may refer to either the entire process, or to the ritual purification. Once the body is purified, the body is dressed in tachrichim, or shrouds, of white pure muslin or linen garments made up of ten pieces for a male and twelve for a female, which are identical for each Jew and which symbolically recalls the garments worn by the Kohen Gadol (High Priest). Once the body is dressed, the casket is closed. When being buried in Israel, however, a casket is not used.

The society may also provide shomrim, or watchers, to guard the body from theft, rodents, or desecration until burial. In some communities this is done by people close to the departed or by paid shomrim hired by the funeral home. At one time, the danger of theft of the body was very real; in modern times it has become a way of honoring the deceased.



Over the years, I've served on a number of Chevra Kadishas: in Atlantic County, NJ, in Miami Beach, Florida, in Efrat, Israel, and in Stamford, CT.

Each Chevra had its own character, ranging from Atlantic County, where there was a large elderly population and hence frequent deaths and only 4 of us on the Chevra (resulting in what I have come to think as my trial by fire - having to do 9 Taharot in the first week of my volunteering), to Miami Beach, where there was also a large elderly population but about 40 volunteers, so that you were able to choose between serving weekly, twice a month or monthly.

In all cases, everything was done with utmost respect for the dead, but I had one experience that completely changed my approach to doing Taharot.

There was a rebbetzin who served on the Miami Chevra who seemed to go beyond the usual respectful stance. When you watched her handling the dead, it seemed as if she were cradling her beloved newborn in her arms.

I told her how impressed I was with her manner of carrying out her Chevra duties, and she suggested I read the article, "What the dead think of us," by Aryeh Kaplan.

In the article, R Kaplan says that in the days immediately following death, the soul is still emotionally attached to the body, hovering close by and experiencing everything the body experiences. Only later is the soul able to completely let go of its corporeal existence.

It was so different to do a Taharah with that idea in mind, rather than just dealing with a body on its physical level. From then on, I carried out my Chevra Kadisha duties on a totally different plane.




Sunday, December 4, 2016

Back When a Sefer Torah Could Be Had for $130

or
The Congregation Ahavath Torah, Englewood, NJ - Oral History




The synagogue that we attended in Englewood when we were growing up was Congregation Ahavath Torah, which was founded in 1895.

In 1995, as part of the shul's centennial celebration, Phyllis Appleton, a member of the shul, interviewed old timers and published an oral history of the shul.

Here's a sample:

In midsummer of the year 1895, the eight Jewish inhabitants of Englewood met in the house of Jacob Reznick. They convened for the purpose of discussing the possibility of forming a Minyan for the forthcoming High Holy Days... Reverend Sher, the leader of the group, proposed that a Sefer Torah be purchased. Each present donated $10, a most generous contribution in those days, towards the Sefer Torah, making a total of $80. Rev. Sher and Israel Saben traveled to New York, where they discovered that a Torah could not be had for less than $130. They bought the Torah and agreed to pay the balance of $50 within 90 days...

In Edgewater, there lived a Jewish merchant whose child had died and the community, like Englewood, did not have a Jewish cemetery. Israel Saben, who happened to be in Edgewater on the day the death occurred, visited the bereaved father and proposed to him that the Jewish inhabitants of Englewood attend to the last rites of the child. Max Moskin and Louis Levenstein were delegated to attend to the burial. They rented a horse and buggy for the sum of four dollars, journeyed to Edgewater and with the deceased, traveled to Paterson, where they applied to the leaders of the Jewish community for permission to bury the child in their cemetery.

The Paterson Jews were moved by the sincerity of these men, and agreed to permit the burial without charge. On the day following the internment,the appreciative Jewish merchant from Edgewater presented Israel Saben with a check of $100 for the services rendered. Overjoyed, he hastened back to Englewood and presented the then fabulous sum to Rev. Sher. This occurred on the day the note was due. The $50 balance on the Sefer Torah was paid and after deducting the $4 rental for the horse and buggy, the Jewish community of Englewood had its first treasury of $46.





Saturday, December 3, 2016

The most humiliating experience of my life (so far)

or
What in the world was I thinking when I decided to do that?





From 1990 until 2000 I was involved in the activities of the (now, unfortunately, defunct) Israel Neurofibromatosis Organization (INFO). I was in charge of publications, organized a support group for patients and families in the Jerusalem area, and organized three medical conferences. It was my way of dealing with my child's unsolvable medical issues. Even if there was nothing I could do about his situation, at least I could change something for someone else.

At some point, I became the INFO representative to ZVI (צרכני בריאות ישראל) - The Israel Health Consumer Organization.

In 1994, in the course of drafting the Israel National Health Insurance Law (חוק ביטוח בריאות ממלכתי), ZVI was asked to send a delegate to represent the Israeli health consumer in a panel discussion about the proposed law that was to take place at a national social workers' convention at Binyanei Hauma, before an audience of 2000 people.

The other speakers on the panel were Minister of Health Haim Ramon, the CEO of Kupat Cholim Clalit, and a third person whose name and position I don't remember, but who had once served in the Knesset. Rafi Reshef was to be the moderator.

ZVI was having trouble finding a volunteer for the job because the panel discussion was to take place in the middle of the day, and most members worked full time. I was not working full time, so I ended up volunteering to speak.

Each member of the panel was to present their position for ten minutes and a discussion was to follow. I was scheduled to be last in the lineup.

Well, each of the first three speakers went way over their time limit (hello, moderator?) bringing us to the time listed for the lunch break, and I was told that I would only have two minutes to speak.

It was not easy for me to shorten my speech on the spot from ten minutes to two, Hebrew being my second language. I had planned to stick closely to what I had written out. As I spoke, droves of people in the audience left for lunch, but even worse, the other three panel members started yelling at me, "That's a lie!" "You don't know what you're talking about!" and "You're an idiot!"

Somehow, I made it through my presentation, but I cried all the way home on the bus, and every morning for the next few months, as soon as I woke up, I repeated my new mantra to myself, "I will never speak in public again!"

It was only 10 years later, when I went back to school and took a required class in speech, that something occurred to me. I was reading in my textbook about how important it is to keep your audience in mind, when the light bulb went on over my head: Those men had all served in the Knesset! That's what they do in the Knesset - they verbally abuse each other! It wasn't about me, it was all about them!

I know, I'm a slow learner when it comes to certain subjects.

The second lesson I learned that day, was not to prepare for something like that on my own (not that I have any intention of doing anything like it again). I would have had much more confidence in myself had I prepared the speech along with other members of the group.

A possible third lesson: Prepare a few versions of a speech in different lengths just in case.



Friday, December 2, 2016

Yaakov's Journey

or
The Time That God Spoke to Me Through Two Magazines and a Newspaper







In honor of Yaakov's 30th birthday
Shared with his permission


Yaakov was diagnosed at 18 months with neurofibromatosis, a congenital condition that causes a proliferation of benign tumors of the nervous system; benign in the sense that they are not cancerous, but not so benign in the sense that they can still cause great damage to the human body.

When he was 5 years old, a massive tumor was found in his neck that stretched from the base of his brain to his aortic arch. The tumor encircled and constricted his larynx and trachea, and threatened to impinge on numerous organs, not only his brain and heart, but everything in between, i. e., his spine, lungs and thyroid. The ENT staff at Hadassah Hospital told us that it was a miracle that he was alive and breathing.

Yaakov had had noisy breathing for a few years already, but there had never been any indication that he had any trouble breathing. His doctors had, until then, attributed his symptoms to enlarged adenoids, which they were in no rush to remove. We were now told that there was no option other than to perform surgery to remove the tumor and sooner rather than later. The doctors were careful to inform us that the type of tumor that Yaakov had cannot be removed without damaging the nerve on which it forms. They also told us that despite the urgency of the surgery, they needed 6 weeks to prepare for it, both in terms of research and of obtaining the necessary medical equipment, not exactly music to a mother's ears. During those 6 weeks, my nerves were wound up about as tightly as they could get without snapping altogether.

The excision of the tumor took 11 hours and required 8 surgeons. As we were warned might happen, the surgery resulted in damage to a cranial nerve, leading to, among other things, vocal cord paralysis and consequently, reduced voice quality and swallowing issues. For a couple weeks after the surgery, Yaakov had no voice at all, which the doctors had cautioned could be a permanent result of the surgery. Thankfully, by the end of his 6 week hospital stay, Yaakov had regained his voice, albeit a weaker and hoarser version of the one than he had had prior to the surgery. For the next few months, he had to be readmitted to the hospital numerous times with aspiration pneumonia due to the swallowing problems.

I'll never forget an incident that occurred in shul on Rosh Hashana about nine months after the surgery. For a short time during the davening, I was separated from Yaakov by a large pillar that blocked my view of him. At the time, he was sitting on a chair consisting of a hard plastic seat attached to a metal base. Unfortunately, the plastic part separated from the base and fell off of it, leaving Yaakov suspended by his arms and legs from the top of the base in a position from which he was unable to extricate himself. He was crying hysterically, but no sound came out of his mouth at all and neither I nor any one else around noticed his predicament. By the time I realized what was happening, his face was bright red and soaked with tears. For those few minutes, he had been totally helpless.

The surgeons told us that at some point in the future, they wanted to perform a procedure that would strengthen Yaakov's voice and enhance his ability to swallow. It involved the injection of a liquid form of Teflon into the paralyzed vocal cord which would harden and permanently inflate the cord. They said that they were in no rush to do it and actually preferred to wait a couple of years, as they wanted that area of his body to have the time to heal completely and have a nice, long rest.

I was quite happy not to have to think about the future right away, as I, myself, needed time to heal emotionally from the recent events, not to mention from the fact that Yaakov's doctors repeatedly told us that he had a very poor prognosis. They told us that the normal course of the condition is for the tumors to grow back and that if they did, due to their location, the results could be catastrophic.

A year later, Yaakov was doing quite well. His voice was still weak and hoarse, but he had adapted to his new anatomy and was speaking a bit louder and more clearly and swallowing more easily. The days of aspiration pneumonia were behind us. There was no sign of tumor growth and Yaakov was happily back in school.

Despite the doctor's dire prognosis, life had returned more or less to normal and I started thinking about going back to school to complete my studies for a masters degree in biology. Thinking that I would have to get my brain back into science mode after not having been in school for about 15 years, I stopped into a branch of Steimatzky's and bought myself the latest copy of Scientific American.

When I arrived home and opened the periodical, I saw that one of the articles was entitled, “The Human Voice.” In the article, there were a few paragraphs discussing the Teflon injection procedure that Yaakov's doctors proposed to perform on him. The authors stated that that procedure was no longer performed in the US due to its many complications: adverse reactions to the Teflon, errors regarding the amount of Teflon injected, leakage of Teflon into other parts of the body, and the worst part of it was that the procedure was irreversible. They said that clinics had been set up in the US to deal with the complications of the procedure.

The authors recommended a newer, reversible procedure, a silastic implant, in which a hard piece of plastic was fashioned to the correct size and shape for the patient's needs. The plastic was inserted into the vocal cord under local anesthesia and, while still under anesthesia, the patient was asked to speak. If the voice quality was as sought, the plastic was left in and sewed up, and if not, or if any problems ensued, it could be easily removed, modified and re-implanted (or not). Another advantage of the new procedure was that the plastic was inert and did not produce negative reactions in patients.

At Yaakov's next ENT appointment, I, in one of my more brilliant moves, brought the Scientific American article along with me and showed it to the doctor. His response, in a rather imperious tone of voice, was, “This (Teflon injection) is what we do in Israel. If you want to do the other procedure, go right ahead, but you'll have to go to the US for that!”

I decided to put off the decision for a while. I was confused. I had trusted the Israeli ENT surgeons with the original, very complex surgery, so why wouldn't I trust their judgment regarding this much simpler procedure? I had even, in an effort to determine whether we had followed a good course of action in having the initial surgery done in Hadassah and offer us a sense of what would be the best course of possible future actions, taken the written medical summary of Yaakov's surgery and shown it to the medical director of the National Neurofibromatosis Foundation in New York, a world renowned expert on the condition. He had assured me that Yaakov's surgeons had used state-of-the-art techniques and that he could think of no better place to have had the surgery, or any future procedures performed, than Hadassah.

Did it make sense to trust the authors of a journal article, of whom I knew very little, more than the doctors at Hadassah?

When Yaakov was about 11 years old, I decided that it was finally time to come to a decision about how to proceed. Aside from the continual pressure that was being exerted by the ENT surgeons to do the Teflon injection, I had hoped that we would be able to help Yaakov have a stronger voice by the time of his Bar Mitzvah, so that he would be able to read from the Torah and have his voice heard, just as his friends were doing.

Around that time, I was reading a copy of Good Housekeeping magazine and came across an article on “The Best Doctors in the US” that listed top physicians in every conceivable specialty. This was in 1996, right around the time that I was beginning to use the internet, but I wasn't yet able to do a decent internet search. So, at that time, printed material was my major source of information.

I decided to contact an ENT surgeon listed in the magazine as a top throat specialist. In the end, I was led to another highly reputed doctor in that specialty whose practice was located not far from where my parents live in New Jersey, where we visited yearly. I corresponded with that doctor via email and he wrote, “Please!!! Do not consider a Teflon injection for your son! If it were my son, I would not go near it with a 10-foot pole!”

On our next visit to the US, we took Yaakov to see the throat specialist. On the morning of his appointment, I entered my parents' kitchen to have breakfast, and the first thing I saw was a copy of The New York Times sitting on the kitchen table. It was Tuesday, when the special section in the Times is “The Science Section.” Would you care to guess what the subject of the lead article was in the Science Times that day? You guessed it: the human voice. The article reiterated what I had read in Scientific American five years before, with some more detail and more current information. Just in case I had any doubts that I was headed in the right direction...

The ENT surgeon recommended that we wait until Yaakov was 16, when his body would reach its adult size, before having the silastic implant procedure done. The procedure was most successful in adult sized larynges, where there was enough space for a permanently inflated vocal cord and for air to pass through. So, my hopes for the Bar Mitzvah were dashed, but at least we had a direction in which to proceed.

For the venue of the Bar Mitzvah service and Torah reading,we chose the beit midrash at the yeshiva where Yaakov's father then taught, as it had fairly good acoustics and seemed to afford the best opportunity for Yaakov's voice to be heard. However, I hadn't thought of checking out how his voice carried to the women's section, and it turned out that we women were not able to hear a thing.

All the women present that day sat in perfect silence through the inaudible Torah reading, and tears flowed down my cheeks, for Yaakov and his losses, for my own losses, for Yaakov's continued good health, and for the wonderful kindness, respect and sensitivity of my female relative and friends.

When Yaakov reached the age of 16 and the time came to review the possibility of a silastic implant, we were living in Connecticut. Yaakov was still confounding his doctors' prognosis with his good health. We took him to a local ENT surgeon, who, after some testing, regretfully informed us that Yaakov was not a good candidate for a silastic implant, as the original tumor had permanently affected the growth and shape of his larynx and trachea, rendering his anatomy unsuitable for the procedure. If Yaakov's vocal cord were to be expanded, there would be no room left for air to pass through.

So, while the information in the periodicals did not at that time lead to a solution for the problem of Yaakov's reduced voice quality, it did save him from a potentially dangerous procedure, and left me more knowledgeable regarding possible solutions and medical professionals who might aid us in the future.

Oh, I almost forgot. Before we moved to Connecticut and were told that the silastic implant could not be done in Yaakov's case, he had one last checkup with his Jerusalem ENT surgeon. Just as we were about to leave his office, the doctor said, “You know, I just came back from 3 weeks in the US learning how to perform the silastic implant procedure. If you'd like, Yaakov can be my first patient!” I politely declined.

My take on this story is that God speaks to us in any way that we can hear Him, or, that God is to be found wherever you let Him in. I don't read magazines much anymore, so any further messages will have to come from somewhere else.

When I think of Yaakov today, I am reminded of an idea that I once heard from Yaakov's father, Rabbi David Walk: What is the difference between a blessing and a miracle? Let's say that you have a packet of seeds that has a label on it that claims that on average, 97% of the seeds germinate. If you plant them and 100% of the seeds germinate, that is a blessing. If 101% germinate, that is a miracle.

Today, Yaakov is a mature adult, celebrating a milestone birthday, and, contrary to his doctors' endlessly repeated dire prognosis, he continues to do just fine. When I look at the healthy, happy, kind, caring, funny man he has become, I feel an overwhelming sense of gratitude to God and to His medical emissaries who cared for him over the years. The fact that the tumors never grew back, nor did any new ones ever appear is, at the very least, a huge blessing and perhaps even a miracle.

May God grant that it continue for many more years.


Thursday, December 1, 2016

G6PD Deficiency - Family Genetics - Knowledge Is Power




This story begins about 4 1/2 years ago with the birth of Tamar's fourth child, Benaya.

Neonatal jaundice is a fairly common phenomenon, occurring in approximtely 50% of newborns. It usually lasts a week or two and during that time, depending on the severity, is treated with phototherapy.

All of Tamar's children were jaundiced and with them, it lasted for 3 to 4 weeks. Until the birth of Benaya, it was ascribed to ABO Incompatilility.

Hemolytic disease of the newborn (ABO)
From Wikipedia, the free encyclopedia

In ABO hemolytic disease of the newborn (also known as ABO HDN) maternal IgG antibodies with specificity for the ABO blood group system pass through the placenta to the fetal circulation where they can cause hemolysis of fetal red blood cells which can lead to fetal anemia and HDN. In contrast to Rh disease, about half of the cases of ABO HDN occur in a firstborn baby and ABO HDN does not become more severe after further pregnancies.


For some reason, it was decided to test Benaya for G6PD deficiency, and he tested positive.

At first, I assumed that he had inherited from his father, who is of Turkish and Egyptian descent, as the deficiency is known to be more common among Sephardim. However, when I did some internet research, I discovered that the gene for the deficiency is X-linked, which means that a male can only inherit it from his mother, which meant that Tamar had the gene in at least one X chromosome.

If Tamar had it, what about my other children?

I suggested that they have themselves tested, and they answered with a "you first, Ima!" So I had my self tested and I too tested positive. I could have inherited the gene for the deficiency from either my mother or my father, so the next time I visited Englewood, I accompanied my father to his medical checkup and asked the doctor to test my father. He, also, tested positive for the deficiency.

Then Lennie was tested and also came out positive, which meant that he had inherited it from my mother, and that both our parents are positive for the deficiency. I think that this is rather unusual in an Ashkenazi family.

Since my parents have lived with the deficiency for 90 some years and undoubtedly were exposed to at least some of the triggers, I assume that our family has a fairly mild variant of the deficiency, but still, it would be prudent to avoid the triggers listed in the article below.

So kids, stay away from those fava beans!


Glucose-6-phosphate dehydrogenase deficiency
From Wikipedia, the free encyclopedia

Glucose-6-phosphate dehydrogenase deficiency (G6PD deficiency), also known as favism (after the fava bean), is an X-linked recessive inborn error of metabolism that predisposes to hemolysis (spontaneous destruction of red blood cells) and resultant jaundice in response to a number of triggers, such as certain foods, illness, or medication. It is particularly common in people of Mediterranean and African origin. The condition is characterized by abnormally low levels of glucose-6-phosphate dehydrogenase, an enzyme involved in the pentose phosphate pathway that is especially important in the red blood cell. G6PD deficiency is the most common human enzyme defect.

There is no specific treatment, other than avoiding known triggers. In the United States, no genetic screening of prospective parents is recommended, as the symptoms only show in part of the carriers and when that is the case, they can be prevented or controlled, and as a result the disease generally has no impact on the lifespan of those affected. However, globally G6PD deficiency has resulted in 4,100 deaths in 2013 and 3,400 deaths in 1990.

Carriers of the G6PD allele appear to be protected to some extent against malaria, and in some cases affected males have shown complete immunity to the disease. This accounts for the persistence of the allele in certain populations in that it confers a selective advantage.

Signs and symptoms

Most individuals with G6PD deficiency are asymptomatic.

Symptomatic patients are almost exclusively male, due to the X-linked pattern of inheritance, but female carriers can be clinically affected due to unfavorable lyonization, where random inactivation of an X-chromosome in certain cells creates a population of G6PD-deficient red blood cells coexisting with normal red cells. A typical female with one affected X chromosome will show the deficiency in approximately half of her red blood cells. However, in rare cases, including double X deficiency, the ratio can be much more than half, making the individual almost as sensitive as a male.

Abnormal red blood cell breakdown (hemolysis) in G6PD deficiency can manifest in a number of ways, including the following:

Prolonged neonatal jaundice, possibly leading to kernicterus (arguably the most serious complication of G6PD deficiency)
Hemolytic crises in response to:
Illness (especially infections)
Certain drugs (see below)
Certain foods, most notably broad beans
Certain chemicals
Diabetic ketoacidosis
Very severe crises can cause acute kidney failure

Favism may be formally defined as a hemolytic response to the consumption of broad beans. All individuals with favism show G6PD deficiency. However, not all individuals with G6PD deficiency show favism. Favism is known to be more prevalent in infants and children, and G6PD genetic variant can influence chemical sensitivity.Other than this, the specifics of the chemical relationship between favism and G6PD are not well understood.

Genetic cause

Two variants (G6PD A− and G6PD Mediterranean) are the most common in human populations. G6PD A− has an occurrence of 10% of Africans and African-Americans while G6PD Mediterranean is prevalent in the Middle East. The known distribution of the disease is largely limited to people of Mediterranean origins (Spaniards, Italians, Greeks, Armenians, Jews and other Semitic peoples).Both variants are believed to stem from a strongly protective effect against Plasmodium falciparum and Plasmodium vivax malaria. It is particularly frequent in the Kurdish population (1 in 2 males have the condition and the same rate of females are carriers). It is also common in African American, Saudi, Sardinian males, some African populations, and Asian groups.

Triggers


Carriers of the underlying mutation do not show any symptoms unless their red blood cells are exposed to certain triggers, which can be of three main types:

foods (fava beans is one of them),
medicines and other chemicals (see below), or
stress from a bacterial or viral infection.

In order to avoid the hemolytic anemia, G6PD carriers have to avoid a large number of drugs and foods. List of such "triggers" can be obtained from medical providers.

Drugs

Many substances are potentially harmful to people with G6PD deficiency. Variation in response to these substances makes individual predictions difficult. Antimalarial drugs that can cause acute hemolysis in people with G6PD deficiency include primaquine, pamaquine, and chloroquine. There is evidence that other antimalarials may also exacerbate G6PD deficiency, but only at higher doses. Sulfonamides (such as sulfanilamide, sulfamethoxazole, and mafenide), thiazolesulfone, methylene blue, and naphthalene should also be avoided by people with G6PD deficiency as they antagonize folate synthesis, as should certain analgesics (such as phenazopyridine and acetanilide) and a few non-sulfa antibiotics (nalidixic acid, nitrofurantoin, isoniazid, dapsone, and furazolidone). Henna has been known to cause hemolytic crisis in G6PD-deficient infants.Rasburicase is also contraindicated in G6PD deficiency.

Treatment

The most important measure is prevention – avoidance of the drugs and foods that cause hemolysis. Vaccination against some common pathogens (e.g. hepatitis A and hepatitis B) may prevent infection-induced attacks.

In the acute phase of hemolysis, blood transfusions might be necessary, or even dialysis in acute kidney failure. Blood transfusion is an important symptomatic measure, as the transfused red cells are generally not G6PD deficient and will live a normal lifespan in the recipient's circulation. Those affected should avoid drugs such as aspirin.

Some patients may benefit from removal of the spleen (splenectomy),as this is an important site of red cell destruction. Folic acid should be used in any disorder featuring a high red cell turnover. Although vitamin E and selenium have antioxidant properties, their use does not decrease the severity of G6PD deficiency.

Epidemiology[edit]

G6PD deficiency is the most common human enzyme defect, being present in more than 400 million people worldwide.

G6PD deficiency resulted in 4,100 deaths in 2013 and 3,400 deaths in 1990. African, Middle Eastern and South Asian people are affected the most, including those who have these ancestries. A side effect of this disease is that it confers protection against malaria, in particular the form of malaria caused by Plasmodium falciparum, the most deadly form of malaria. A similar relationship exists between malaria and sickle-cell disease. One theory to explain this is that cells infected with the Plasmodium parasite are cleared more rapidly by the spleen. This phenomenon might give G6PD deficiency carriers an evolutionary advantage by increasing their fitness in malarial endemic environments. In vitro studies have shown that the Plasmodium falciparum is very sensitive to oxidative damage. This is the basis for another theory, that is that the genetic defect confers resistance due to the fact that the G6PD-deficient host has a higher level of oxidative agents that, while generally tolerable by the host, are deadly to the parasite.

Prognosis

G6PD-deficient individuals do not appear to acquire any illnesses more frequently than other people, and may have less risk than other people for acquiring ischemic heart disease and cerebrovascular disease.



The songs we sang

"Water to wash the dishes, water to wash the floor, water to wash Rachel and water to wash Tamar."





"Oh do you know my Grandpa Ralph, my Grandpa Ralph, my Grandpa Ralph, oh do you know my Grandpa Ralph who lives in Englewood."





"!יעקובי,יעקובי, אין כמוך בעולם"



I can't find a better version of this one





Grandma Anita sang us these:







We used to sing Shir Hamaalot to this tune:













The Tamir Goodman-Shaki connection



Our family connection to this story: My daughter, Tamar, is married to David Shaki, son of Avner, z"l and Nehama.

From http://www.collive.com/show_news.rtx?id=34275

Feb 18, 2015

The Rebbe's Bracha Saves...Again

A blessing from the Lubavitcher Rebbe to late Knesset member Avner Shaki obm was a life-saver for famed basketball star Tamir Goodman, many years later.

At an elegant Yud Shvat Melava Malka celebrating the 7th anniversary of Chabad of Baka, Mrs. Nechama Shaki, wife of the late Knesset member Avner Shaki z'l, and Tamir Goodman, Jewish basketball star, shared the fascinating story of how their lives became intertwined through the Rebbe's bracha.

Here is the story they shared, as written by Tuvia Bolton and posted on the Ascent website.

Career Hinges
by Tuvia Bolton

A week ago I attended the celebration of the circumcision of the eight day old son of a good friend: Tamir Goodman. Close to a hundred friends and family were there. In the middle of the festive meal, a well dressed, perhaps sixty year old woman suddenly stood up, asked for silence, and began to speak.

She introduced herself as the widow of the departed Knesset member Professor Avner Shaki, of blessed memory (a native of Tsfat --ed.). She then went on to explain the reason for her being there. About a year ago Tamir called her home, asked for her husband, and when he heard that he had passed away, asked if he could speak to her. He introduced himself and began thanking her profusely saying repeatedly, "You and your husband saved my life!"

At first she thought it was a prank from some old political enemy or from a madman until she calmed him down and heard his story.

Tamir Goodman, an observant Jew, is well known in Jewish circles as a star basketball player from Baltimore. In high school in the USA he had averaged 35.4 points per game. In 1999, he was featured on the cover of Sports Illustrated and interviewed by ESPN, 60 Minutes, and Fox Sports. A follower of Chabad, he wore both a kippah headcovering and a tallit katan fringed undergarment during all his games, and continues to do so until this day. In 11th grade, he was ranked the 25th-best high school player in the country.

In university all the games his team played were re-scheduled so as to not fall on the Sabbath; an unheard of precedent in America.

When he graduated college, the best team in Israel, Macabbee Tel Aviv, signed him to a long-term contract. It was in all the papers. He became the darling of the Israeli media and was interviewed countless times in all the newspapers and on television. He made aliyah, served in the IDF, married and had a daughter before this son.

But suddenly his luck changed. He began having troubles with his left knee. It was giving him such pain and discomfort that the team doctors were pessimistic. He had to sit out many games. The team that brought him over traded him away, he was demoted to a minor league, and the future looked dim. And the Israeli media that once adored him began attacking him like crows. Every week someone had a vicious remark to make about him which made his life almost unbearable.

Intense physical therapy helped only temporarily. There was no other recourse than to operate. But the experts told him that the chances for success were very small… maybe five percent.

So, being a follower of the Lubavitcher Rebbe, he decided he needed the Rebbe's advice and blessing. He went to the Ohel (the place in Montefiore Cemetery in Queens, N.Y. where the Rebbe's grave is) wrote a letter asking for help and read the letter aloud. He poured his heart out asking for some sign as to whether he should make the operation or not.

Then, exhausted, he left the Ohel and went to the Chabad House which is located adjacent to the cemetery. He sat down to rest in the reception room, where a screen shows around the clock thousands of hours of videos of the Rebbe speaking, often to individuals.

Mrs. Shaki continued, "The reason he called to thank me has to do with one of these videos. But I have to first give you some background.

"Some forty five years ago in 1963 the Israeli government passed a horrendous law that could have been low point in the history of Judaism and, indeed, threatens to this day the entire Jewish world. The law of 'Who is a Jew'.

"A certain officer in the Israeli Navy married a gentile woman from Ireland who underwent a illegitimate conversion and bore him several children. He then brought them all to Israel and wanted the government to register them as Jews to make them eligible for government benefits. (Israel is, ostensibly, a haven for Jews. The only question is…who exactly is a Jew. Previous to this awful episode, the Torah definition i.e. one whose mother was Jewish or who converted to Judaism according to Jewish law, was law). But the Israeli 'High Court' agreed to change it!

"They decided five to four that the Torah was no longer a factor! Rather anyone called Rabbi, whether truly observant of the Torah or not, could make Jews.
"True their pitiful decision had to be ratified by the Israeli parliament, but at that time the Knesset was controlled by a 'leftist' coalition of nearly one hundred out of 120 members that were all for the change.

"This is where my husband of blessed memory, Professor Avner Shaki, came in. His party, the National 'Religious' Party, was officially part of this ruling coalition, and their orders were to abstain, which everyone understood is the same as token support of the change. So although he, personally, was abhorred by and totally opposed all this, he was obligated by party loyalty to keep his opposition to himself.

"We discussed it and decided he had no recourse other than to bite the bullet. In any case his one vote would have no real swing value anyway, and if he broke coalition discipline we would lose everything.

"But then, the night before the vote we received a long distance telephone call from New York. It was the Lubavitcher Rebbe himself!

"The Rebbe asked for my husband and when he answered the Rebbe introduced himself and actually begged my husband to stand up and vote 'No'!

"My husband explained that to do so would mean the end of his political career. The leftist media would make mincemeat from him, and he would almost certainly get expelled from his party. And in any case his nay vote wouldn't be significant; one hundred votes were against him and the law would go through in any case.

"But the Rebbe replied as only the Rebbe could. He said SOMEONE had to be willing to sacrifice themselves for the truth, to M'kadish Shaim Sh'maim (publicly sanctify G-d's Name).

"Well, it was hard to believe and, look, after all, we are not Chabad Chassidim. But the next day my husband did it! He actually stood up, raised his hand and voted against! I don't know if such a thing every happened in Israeli politics.
"The Israeli newspapers and television ridiculed him; his fellow party members were blazing mad! They despised him. He made hundreds, if not thousands of political enemies. We were suddenly alone. But we refused to sell out.

"Shortly thereafter we went to New York to visit the Rebbe. When my husband entered the huge auditorium where the Rebbe was speaking to thousands of Chassidim, the Rebbe actually stood for him. Afterwards we had a private audience with the Rebbe that was videotaped.

The Rebbe thanked us for our bravery, especially thanking me for supporting my husband. But then when my husband complained of how he was fired from his party position and the media was descending on him, the Rebbe replied.
"Pay no attention to the media. And regarding your job; you are like a professional athlete; you are just taking a step back in order to jump ahead with doubled and redoubled power and success."

"Sure enough it was just like the Rebbe said. Several years later my husband, Professor Avner Chai Shaki, was asked by his party to return, but this time as its leader! He truly jumped to redoubled success. But we never understood why the Rebbe talked about athletes. After all, my husband was certainly no professional athlete.

"Well, about a half a year ago; twenty five years after the Rebbe said those words to us we found out.

"Tamir Goodman was sitting in the Chabad House near the Ohel wondering about his operation, when suddenly our video appeared on the screen before him and the Rebbe said the words he was waiting to hear:

"'Pay no attention to the media. You are like a professional athlete; taking a step back in order to jump ahead with doubled and redoubled power and success.'

"The words perfectly fit his predicament! The Rebbe was encouraging him. He returned to Israel and made the operation, despite the reservations of the Professor who was to operate. It was, thank G-d, a complete and miraculous success! That is why he called to thank us and that is why I'm here at this meal today!"

~~~~~~~~~~~~