You, Individually, Alone

Sermon given November 19, 1999
at Beth El Temple Center
Belmont, Massachusetts

Naomi L. Zikmund-Fisher


Shabbat Shalom.

I'd like to thank Rabbi Kraus and Abby Fisher for inviting me to speak with you tonight. I've known Abby for about 29 years now, and it's nice that after all these years my talking to her friends is no longer an embarrassment.

In the parsha this Shabbat, we hear about Jacob and his dream of a ladder ascending to heaven. We hear God's promise to Jacob's offspring -- to us -- "I am with you. I will watch over you wherever you go and will bring you back to this land. I will not leave you until I have done what I have spoken to you." God promises Jacob the same divine promise given to his father and grandfather, "All the nations of the earth will find blessing through you and your offspring." In this parsha, like so many before and so many after it, we learn that we as Jews have a sacred relationship with God affording us special blessing.

We have come together tonight to honor that relationship. We are here to do what Jews do best -- be together as a people. We pray together, we eat together, we sing together, at Sinai we received the covenant together. In this week's parsha, we learn that Jacob dreamt of promises made to his descendants -- to us -- together. In the U.S. in the 20th century, we can especially be proud of the fact that we perform tzedakah together. As American Jews, we respond to social problems with a resounding voice, forming organizations to address a wide spectrum of injustices and then opening our checkbooks to support those organizations. We have UJA, CJP, JNF, NIF, ARZA, AJC, ADL, JDC, Mazon, Haddassah, and any number of other groups all working to make this world better for us, for other Jews, and for other human beings, so that through us the nations of the earth can be blessed. Our congregations are headquarters of social action projects. We do good, and we do it well, together.

If you're like me, you're probably more used to being on the giving end than the receiving end of that tzedakah. I've been blessed with a very comfortable life. I had no experience with the kindness of strangers until one day in March of 1998, when I was 6 months pregnant with my daughter. I was at work and the secretary came over the loudspeaker and said, "Mrs. Z" -- they call me Mrs. Z because the kids can't say Zikmund- Fisher -- "Mrs. Z, can you take a phone call?" "Well, no, I can't," I told her, "I'm teaching." "It's your husband. He says it's important." Now, in 7 years of marriage I can count the number of times Brian has called me at work on the fingers of one hand, and he's never interrupted my teaching. I went to the phone. My first thought was that someone had died, and I was already calculating whom it might be and how much time I could take off from work to go to a funeral. But what he said caught me totally by surprise and changed my life forever.

"My platelet count is 19."

Platelets are the part of your blood that make it clot -- without them you bleed to death. A normal platelet count is over 150. When Brian was a teenager he had an episode of an unexplained low platelet count -- it went as low as 45 and they never figured out why, but it went away. They told him at that time that it was possible he was in a pre- leukemic state. In March of 1998, he had gone in for a routine blood test and the count came back at 19.

Leukemia, I thought. It must be leukemia, it's finally happened. The hematologist wasn't nearly as concerned -- an "immune system fluke" was her guess, but they ran more tests just to be sure.

When the diagnosis came back, of all that I was told, all I heard was "it's not leukemia." I rejoiced. Good news!

What I did not hear that day -- what it took me almost a month to process -- was the diagnosis Myelodysplastic Syndrome, the description progressive, life-threatening bone marrow disease, the prognosis, a median life expectancy of 5 to 6 years, and the only potential cure, bone marrow transplant.

It soon became clear that Brian did not have 5 or 6 years. He probably had two at the outside. His platelet count dropped to the point where he needed transfusions. You cannot keep someone alive by giving them blood transfusions or platelet transfusions forever. Eventually the body builds up so many antibodies to the foreign matter you are pouring into it that it simply rejects the new blood. Brian needed a bone marrow transplant. His best chance for a match would have been a sibling, but he is an only child. Like 70% of patients in need of transplant, his was going to have to come from an unrelated, anonymous donor.

While the doctors went to work trying to find him a donor, we went to work on a more immediate problem. Bone marrow transplants in Brian's situation, which is actually one of the better situations, still have about a 25% mortality rate. One out of four patients don't make it. One of the ways you can try to get on the good side of those statistics is to have as few antibodies in your system as possible. But Brian was getting platelets almost every week, and one unit of platelets usually comes from 6 different blood donors. That's a lot of foreign stuff for the body to react to. We wanted to find a single, dedicated donor who would donate platelets once a week for Brian.

So we did what people do in a crisis the 90's. We sent out email. We wrote to everybody we knew in Pittsburgh with this request: We need a healthy, A+ donor who is willing to donate platelets through a process called apheresis, where they spin the platelets out of the blood and return the rest to the donor, every single week for two or more months. The process takes about 2 hours at a time.

Now, what would you do if you found that request from a friend in your inbox? "Hi, it's Brian, could you please save my life?" Our friends responded in droves. For the most part, however, they couldn't help. Many were the wrong blood type. Others tested positive for a particular antibody which Brian couldn't have. Some were going out of town for the holidays. One friend, a Lupus patient who was on 10 separate medications, was ready to alter her medication schedule to try to be eligible to donate for Brian. At the end of the day, we had many offers and no donor.

Then the phone rang. It was a lecturer from Brian's department, a man he barely knew. He said, "My wife is A+, and she called the blood bank about that antibody and she doesn't have it, and she wants to help." For the next four months, this wonderful woman whom to this day neither Brian nor I have met, went to the blood bank on our demand, usually every 8 or 10 days, and donated platelets for Brian. She didn't know us. She got nothing out of it except the satisfaction of knowing that every 8 or 10 days, she saved someone's life. She got the call, and she knew that call was for her, individually, alone.

Meanwhile, Brian's search for a marrow donor went on. Through the National Marrow Donor Program, a humungous number -- over 800 potential matches and 58 full matches --were found. But as we started sorting through those 58, we learned that although Brian's serologic, or surface, marrow type was very common, his molecular bone marrow type -- the more detailed look -- was quite rare. The search dragged on. His counts dropped. We got scared, realizing that we were running out of time and we were probably going to have to go with a mismatched donor. And mismatched transplants are much more complicated and much more dangerous, as though a 25% chance of dying wasn't bad enough.

In early April, we got the call that every Bone Marrow Transplant family dreams of. They had a perfect match. A 28 year-old man in Australia was going to donate marrow and save Brian's life. We don't know him, and although we may have the opportunity to meet him someday, chances are we never will. But somehow, sometime, he got the call, and he knew that call was for him, individually, alone. My sister calls him "the mensch down under."

I'm not going to lie to you. Bone marrow transplant is by far the worst procedure modern medicine has come up with. In order to kill the diseased marrow, you have to give enough chemotherapy, or a combination of chemo and radiation, to kill the patient, and then give the new marrow to save their life. It is painful, it is scary, and it is not always successful. On Brian's 20-bed floor, four of his neighbors never left the hospital, and one died shortly after discharge. In this day and age of drive-through deliveries and outpatient mastectomies, the average marrow transplant patient stays in the hospital for about a month.

Brian's marrow arrived in a cooler carried by an Australian doctor on May 21st at about 9:30 PM pacific time. The transplant itself was a non-event -- essentially a blood transfusion done by a nurse in his hospital room. As the cells made their way down the IV tubing, Brian put "Fanfare for the Common Man" on the stereo. The hard part was yet to come. For that one night, it felt like all the forces of the entire world had organized to bring Brian his marrow. I sent out a Shehechiyanu over email to our friends at home, and thanked God for the mensch down under.

Brian had his transplant 3000 miles from home, in Seattle at the Fred Hutchinson Cancer Research Center, the oldest and largest center in the world. People go there from all over the world, particularly when their disease is relatively uncommon, as Brian's was, or when they are having a mismatched transplant. We got to see first hand what happens to people who can't find a well matched donor. It isn't pretty. Those who survive are often extremely ill for months or even years. Three of our close friends didn't make it.

I am pleased to tell you today that Brian is 181 days post transplant and doing well. He is a part-time stay at home Dad for our 17 month-old daughter Eve and, when he feels up to it, working on his dissertation. Because of the drugs he still takes which suppress his immune system, he is still not permitted to be around crowds, so he couldn't be with you tonight. His recovery isn't over. It won't be for a long time. But every day that goes by makes it more likely that he will make it.

My purpose in speaking to you tonight is to try to put a face on the need for blood and bone marrow donors. But the face I want to put on that need isn't Brian's, it isn't mine, it isn't even Eve's although that is a pretty cute face if I do say so myself. The face I want to put on the need for blood donation, the face I want to put on the need for marrow donors, is yours. Not yours as a group, not yours as a congregation, but yours, individually, alone. Yours.

Just as surely as God sent a promise to Jacob's descendants as a group, God also sent that dream to Jacob alone. When Jacob awoke, he vowed that if God would keep the promise, then Jacob would set aside a portion of that benefit for others -- he would tithe. Without the actions of Jacob, the individual, there would be no covenant, no reward, for the group which would become the children of Israel, which would become us. Jacob heard the promise to the group, and saw in it a call to himself as an individual, alone.

When Mazon or JNF or UJA comes calling and asks for money, we should act as individuals, but we have the option to hide in the group. We assure ourselves that if we don't write our check for $18, maybe someone else will write one for $36 and make up for it. We shouldn't do it, but we do -- we don't always act as a full member of our covenant community.

But blood donation and marrow donation don't even work that way. I cannot roll up my sleeve and give two pints for you. You have to give your own. I cannot call the National Marrow Donor Program and offer to give marrow for any patients who happen to match you, because they don't match me. You are called upon as a group, as a congregation, to act individually, alone.

If you are, and I pray that you remain, healthy, and you have never given blood, make tonight the night that you hear God's call to you as an individual to be a blessing to the nations of the earth, and sign up to give blood at the blood drive which will be held here on December 15. "But Naomi," you say, "I'm afraid of needles." Well, I understand that, I truly do. Brian in fact was deathly afraid of IV's and used to pass out when they put one in. He has spent the last 6 months with a permanent central veinous line in his chest. If he can overcome his fear, you can too. You are afraid of needles, but patients like Brian will die if you don't give. Hear the call. You, individually, alone.

If you give blood from time to time, maybe once or twice a year, make tonight the night you hear God's call to you as an individual to be a blessing to the nations of the earth, and start giving blood every 8 weeks. After your roll up your sleeve on December 15, go home and write "blood eligible" on your calendar on the page for February 9, which is eight weeks later. When that day comes near, call Red Cross and make your next appointment. Or, better still, find out about becoming a platelet donor. The sad truth is, if you are a blood donor you are part of only 6% of the eligible American population who actually does it, and estimates are that the blood supply will be 100,000 pints short this year. "But Naomi," you say, "I give once in a while. It's too much hassle to give more often." You're right, it is a hassle. But there is no substitute for human blood, and without you, individually, someone is going to die. A bone marrow transplant patient may need 100 or 200 donors during treatment. Hear the call. You, individually, alone.

If you are between the ages of 18 and 60 and in good health, make tonight the night that you hear God's call to you as an individual to be a blessing to the nations of the earth and sign up to be tested as a bone marrow donor. It's a simple blood test. I am told that the only reason a marrow testing drive hasn't been scheduled at this congregation yet is that they believe that everyone who is interested in being a marrow donor has already been tested. You know that isn't true. Knock their socks off. There will be a sign-up of interested people at the oneg. Make them run out of paper. "But Naomi," you say, "being a marrow donor means I might have to have surgery and besides, it's for someone I don't even know." Well, you're right. Being a marrow donor involves the possibility of minor surgery, but it's very safe. Your bone marrow grows back in a matter of days. It's a small price to pay for saving someone's life.

And yes, chances are that if you are ever called as a donor it will be for someone you have never met. And I have to say to you . . . so what? If you are called as a donor the chances are great that you are the only person in the entire world available to save that life. You, individually, alone. If you would do it for your brother or sister or spouse, if you would do it for your child or your friend to save their life, and you know that you would, why is the life of a stranger any less precious? Why should their sibling or spouse or parent have to suffer through their death any more than you should have to suffer through the death of someone close to you?

I want to take a minute to tell you about my friend Jeff. I met Jeff and his wife Cathy through a support group for marrow transplant families. Jeff is in his early 50's and he has leukemia. He has a very rare bone marrow type, and he's Jewish, so his best chance to find a match is another Jew. Jeff was lucky enough to find a match -- his brother. But his brother refused to donate for him. We need you as a bone marrow donor for strangers to make up for people like Jeff's brother. To be there when the ties of family break or were never there in the first place.

Becoming a bone marrow donor is kind of like entering the Publisher's Clearing House Sweepstakes -- you win only if you have the winning number, and the chances of that are pretty small. But the prize for winning is far more valuable than 10 million dollars or even a visit from the prize patrol. If I told you for certain that you could save Jeff's life or Brian's life, I know for sure you would do it. Now I'm telling you that there are literally thousands of people searching right now, today, for their match. Many of them are friends I've made in the course of Brian's treatment. If that match were you, how could you live knowing you didn't help? I beg of you, hear the call. You, individually, alone.

There are things the Torah teaches are right to do. But I also believe there are things which are so important that not only are they right, but not doing them is wrong. Saving someone's life is one of them.

And if you are not in great health, or not as young as you once were, or, and I bless you if this is you, you are already a regular blood donor and a marrow donor, there are still ways you can help. There are still times when opening the ol' checkbook is the best thing to do. As I mentioned earlier, when Brian was searching for a donor they told him how many potential matches and how many full matches there were. You see, when the National Marrow Donor Program began, they only knew about four antigens -- four criteria -- for matching bone marrow. Now they know about upwards of 12. About half of the registry has had full serologic typing -- that takes care of 6 of the antigens and it's a good first pass at finding your match. But the other half of the registry has still only been typed on 4. Finding a match from those people is like finding a needle in a haystack. Sure, it narrows it down, but not enough. Many people we know who were looking for a donor simply didn't have time or money to wade through all those four antigen matches and see if their full match was in there.

So Brian and I started a fund, the "Brian Zikmund-Fisher Fund for DR Typing," to help pay for typing on 6 antigens instead of four when people register as donors. That information is available to patients when they search, which makes their searches faster and more efficient at worst, and at best saves lives since people don't take an inferior match because they run out of time to look for a better one. It's incredibly hard to do fundraising for this because, as you might have gathered, it's kind of technical. Of course I hope that you will help us with this effort, and more information will be available at the oneg. But let me underscore something here.

I don't want your money. I'll take it, sure, I'm not a total idiot. But it's not at the top of my list. At the risk of sounding like a vampire, I want your blood. I want it to be donated to patients who need transfusions to stay alive, and I want a few tubes to be tested for the National Marrow Donor Program. And when you've done that, if the checkbook comes out too, OK.

It is written that those who rise from prayer changed, their prayer is answered. I am here tonight to ask you to make a change. Make tonight the night that you hear the call of God to you as an individual. "Through you, all the nations of the earth shall find blessing." If you are eligible as a blood and marrow donor and you don't give, you have not heard that call. You have not made that change. But if you do give, if everyone here gives, then as a community of individuals, you will truly be worthy of the promise God made to Jacob in this week's parsha, and of the name that Jacob gave to your congregation. For when Jacob rose from his dream, as you are about to rise from your prayer, he said, "God, God was in this place, and I did not know it." And he called the place Beth El, the house of God.

Shabbat Shalom.

© 1999 Naomi L. Zikmund-Fisher


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