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Jewish World Review
Feb. 5, 2004
/ 13 Shevat, 5764
Mikey's song
By
Jonathan Rosenblum
A story of inspiration
http://www.jewishworldreview.com |
A saga that engaged the hearts of thousands of Jews (and non-Jews) around the globe ended last week in
Pittsburgh, with the passing of Mikey Butler. Mikey spent more than half of his 24 years, and nearly 95% of his
last two years in hospitals.
Born with cystic fibrosis, Mikey lived his entire life on the precipice of death. Doctors gave him little chance of
making it to his bar mitzvah. By his early teens, he was already directing the emergency room personnel every
time he was rushed to the hospital.
Two years ago, he underwent a lung transplant in the hope that he would finally be able to breath freely.
Subsequently, he twice developed lymphoma and had to undergo brutal regimes of chemotherapy. Both times,
he went into septic shock; once all his vital signs flatlined prior to his doctors bringing him back to life.
Eventually the lymphoma morphed into full-blown cancer, necessitating an experimental stem cell transplant in
which Mikey's own stem cells were harvested and then transplanted after three days of huge doses of
chemotherapy.
By early October, Mikey's lack of white blood cells to coagulate the blood had caused the linings of every organ
to fall away. His digestive system, kidneys and lungs were all failing.
Yet Mikey's story is not, in the end, one of terrible suffering, but of faith and triumph. Death was Mikey's lifelong
companion. Yet he graduated Yeshiva University, and hoped one day to go to medical school. After his lung
transplant, he was the lead drummer at the NCSY West Coast convention, and cut CDs. He kept in constant
Email contact with hundreds of friends around the globe.
Mikey, said Rabbi Yisroel Miller of Pittsburgh, was m'lumad b'nissim (a person to whom miracles happened.)
He was not supposed to reach adulthood or graduate college or survive the lung transplant. Fifty percent of
otherwise healthy people who go into septic shock die; Mikey's ravaged body survived it twice.
One of his mother Nina's constant themes in the Mikey Updates that reached thousands around the world was
using Mikey's story as a way of helping others to recognize the miraculous in their lives. The Butlers worried
about losing their sense of the miraculous in every breath that Mikey took, not just in the overt miracles that
accompanied him on his uncharted medical journey.
In early September, for instance, Mikey was scheduled for surgery to remove kidney stones that had clearly
shown up on two CATscans. But after being wheeled into the operating room, the flustered urologist could find
no stones. The non-Jewish doctor agreed, to quote Nina, that "miracle was as plausible an explanation as any
other he could offer!"
Neither Mikey nor his equally remarkable parents — Nina, principal of Hillel Academy, and Danny, a judge —
viewed themselves as heroes. "We are not unique; our circumstances are unique," wrote Nina, in one of the
Mikey Updates. Each Update concluded with the family's signature motto: Day by glorious day. And that is how
the Butlers live.
To deal with their ordeal, the Butler's relied on lots of hugging and kissing, and a certain black humor all their
own. Upon learning that Mikey was the first recorded case of someone to develop post-transplant lymphomatic
disorder for a second time, Danny observed brightly, "Well at least no one ever died of a second round of
PTLD." On one of the few occasions that Mikey complained of his situation -- "Abba, I can't see (from cataracts
caused by years of steroids); and I can't hear (from years of antibiotics); and I can't walk (from chemotherapy
dulling the nerves in his feet). . . ." — Danny replied, "But at least you've still got cancer!"
Through it all, Mikey and his family never lost hope for the future. After the stem cell transplant, Mikey was
constantly nauseous from the chemotherapy and in pain from the failure of almost organ. His doctors, however,
would not allow him to sleep for fear that he would fall again into septic shock. Yet even then, Danny wrote,
"Mikey doesn't want it to be over; he wants it to be better."
"I had a terrific Shabbes [Sabbath]," after a recent Shabbes in which he was able to spend 15 minutes on Friday night
and 15 more on Shabbes day with his brother Gavri, who had driven in from school in New York to be with him.
Never did the family doubt that there was purpose in Mikey's life. "G-d is good," Mikey mouthed to his father
two months ago, at a time when he could no longer see, hear, breath, walk, or talk. Mikey lived with the attitude
that even in the hospital he could find opportunities to do chesed, kindness, for others. The family hoped that if the
experimental stem cell transplant succeeded, it would become the standard therapy for overcoming rejection
of transplants.
Mikey's greatest gift was the inspiration he provided to others. The eighteenth birthday wish of Gila Kanal, the
daughter of one of Mikey's doctors, was to be able to donate blood to Mikey. The list of the most recent donors
in Pittsburgh was four single-spaced pages, and it was jokingly said in NCSY circles that the likeliest place in
Pittsburgh to meet one's friends was the local blood bank. For two years, a group of 20-60 people, led by
Danny's sister Feige, gathered weekly at the Western Wall to recite Tehillim (Psalms) for Mikey.
Somehow the Butler family kept readjusting its standards of normal life, and carrying on: walking back and forth
from Pittsburgh's Squirrel Hill neighborhood to the downtown hospital twice every Shabbes; in Nina's case,
managing, on one occasion, to be at both Hillel's high school graduation and Mikey's emergency surgery
scheduled for the same time. On Thanksgiving weekend, the Butler's hosted their annual Shabbaton convention for
counselors at HASC (Hebrew Academy for Special Children) summer camp, at which another Butler child has
been a long-time camper. Mikey encouraged his parents to attend a cousin's Shabbes bat mitzvah in Teaneck
less than a month ago.
Most exciting, Mikey's brother Gavri recently became engaged in January to a young woman whom he first met
through Mikey. Mikey sent out an Email in which he wrote of Gavri: "I love him and respect him in ways I cannot
and will not try to put into words. While I have been on a medical rollercoaster, he has had to grow up very fast
to fill in gaps no brother should have to."
Late Friday evening, before Mikey's last Shabbes, his doctor Dr. Joel Weinberg, who has devoted himself to
Mikey for years, giving up vacations, days off, even his dream of making aliyah (moving to the Holy Land), told him and his parents that
the lymphoma had returned. Late Friday night his parents visited him. He mouthed Kiddush sacrament (being unable to
talk on a respirator), drank a little grape juice, and did the same for HaMotzi and the special challah delivered
every Friday by Rabbi Raphael Wasserman. Then the family sang Shabbes zmiros (hymns), with Mikey, almost totally
deaf, lip-synching along and drumming in perfect syncopation on his tray table.
Mikey never realized his ambition of living a single day as a normal person, without 50-70 doses of medicine.
But he achieved something far greater — changing the lives of everyone who knew him or even knew of him.
Nina wrote in her last Mikey Update, just hours after his passing, "When playing Tug-a-war with G-d, He wins.
Turns out He was on Mikey's side. Now Mikey can hang out with Him. . . . [But] G-d DID listen . . . and we have
no regrets. Although it was WAY too soon for us, G-d has been awfully patient. . . .
"Mikey is hearing beautiful music — without hearing aids — breathing easily in a pleasantly warm place, playing
the drums and singing at the top of his full, vibrant lungs."
Every weekday JewishWorldReview.com publishes what many in Washington and in the media consider "must reading." Sign up for the daily JWR update. It's free. Just click here.
JWR contributor Jonathan Rosenblum, an author, translator and lecturer, is Israeli director of Am
Echad. Let him know what you think by clicking here.
© 2004, Jonathan Rosenblum
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