Caring Communities
Yom Kippur 5774
September 14, 2014
Deborah Katz-Downie
Sinai Temple, Champaign, IL
Our Minyan has a tradition of reaching out to all and inviting us to participate in any way that we can. I was SO honored when Garth phoned to ask me if I would do the Yom Kippor Drosh that I answered with a resounding ‘yes’!
Over the last 22 years, from ‘sitting’ inside the Kindergarten Room to ‘standing’ outside the Kindergarten Room to gathering here in our Davis Chapel, I have so enjoyed the Droshes by our congregants. Some are Torah Scholars, some are not, but each eloquently brings their truly unique memories and experiences to life for all of us to learn from. Each Drosh delivered is especially meaningful because in our Minyan we are here together as part of a caring community and are truly inspired by each other.
So, just to confirm, I am not a Torah Scholar but I am thrilled to have this opportunity to share my words with you today and I hope that I will continue to encourage each of us to care for one another as individuals, as a community, and as part of the world.
One year ago, someone wished me Happy New Year and said that they knew that I had endured a terrible year and they wished me a better year ahead. I replied, “Quite the contrary, I had a GREAT year, I AM HERE!’
For those of you who do not know, I was diagnosed with AML, Acute Myeloid Leukemia in June 2011. AML does not have specific risk factors that one would readily know about in order to hopefully avoid. AML is ‘turned on’ per se by specific mutations that are acquired randomly over ones lifetime – I just got lucky!
What is ‘luckier’ though is that we are close to Washington University and Barnes Jewish Hospital in St. Louis where the AML genome was sequenced in 2008 and groundbreaking research on AML continues. So as I went off to Barnes a friend quipped, ‘Any Hospital with the Word ‘Jewish’ in their name has got to be good!’
Five chemotherapies and an unrelated stem cell donor transplant later, I returned to Urbana in February 2012. Currently my immune system is doing well and I am now able to be out and about in our community, to travel and to come to shule. It has been wonderful to wish everyone a Happy New Year this year with a real hug instead of the ‘elbow to elbow greeting’ that we all learned to master.
I am not going to talk about how cancer affects all of our lives and how so many of us have unfortunately come to know and have lived through this already, but rather I would like to remind everyone that whatever hurdle we encounter that we are part of an amazing and caring community and how each of our interactions can affect the other. How you never know how
important you can be in someone’s life. How you never know what you may say to someone or do that can affect the course of his or her life.
All of you – and I use the general ’you’ to mean everyone so as to not commit a ‘sin of omission’ – have had a part in helping my family and me at some point in some way over the last two years. So many of you here and so many others in C-U participated in the ‘Lotsa Helping Hands Electronic Community’ to help my family keep life as normal as possible here while I was in St Louis. In fact, Stephen learned that so many people wanted to help but could not because as soon as the tasks were posted online, they would fill up!
My family here was thrilled to try new and interesting grocery items that people brought over and they questioned whether I had actually ever gone into the store aisles, claiming that everything I usually bought could be procured from just ‘around the edges’ of the store. Who knew that more than one variety of Oreo Cookies exist?
Rave reviews about all the meals you made for my family here were a daily delight to listen to and truly provided inspiration to me even though I ate little or often-odd things in the Hospital like Lime Popsicles, green peas and tea.
You said a ‘Mi sheberakh’, you visited me; you stayed with me in St Louis, or drove back and forth with me to St Louis for check-ups. You posted encouraging comments on my ‘Deborah’s Daily’ Blog. Made hats for me, helped me shop, sat in our yard or ‘walked me’ around our neighborhood. Sometimes it was just a phone call, an email or a ‘hello’ from a chance encounter with one of my family members or myself that was so comforting and reassuring; unrecognizable as I was for quite a while because I had to don that blue breathing mask in public and occasionally had to chase you down to show you it was really me.
Stephanie Pregent, our Educator and fellow congregant, who organized a Stem Cell Donor Drive here at Sinai Temple in 2011 may not have realized at the time the long lasting and worldwide impact this event actually had.
Although I was unable to find a stem cell donor match from our own C-U community, the awareness and understanding we all gained from the experience was phenomenal and it is certainly possible that someone from our community who registered at that event will become a match for someone, somewhere in the world and have the opportunity to save their life in the future.
This was certainly the case for my donor who I met this past August at the 20th Annual Bone Marrow Transplant Patient Celebration in St Louis. As an undergraduate student she made regular blood donations at her college campus. Because she had an exam one day and was late getting to the Blood Mobile, she was unable to donate blood but was instead offered to do a ‘cheek swab’ and register as a stem cell donor. One year later she accepted the call to donate stem cells for me.
My donor is incredibly humble about the realization that she did in fact save my life and she told the crowd assembled at the Gala that ‘she really did not do much’, and that I had done the ‘heavy lifting’.
The hospital community is a unique, enclosed environment, a place that was lent to me, whose sole focus was to keep me healthy so I could return home. In part, I interpret the ‘heavy lifting’ my donor mentioned as me having been strong to reach out in my new community, to learn as much as I could about my disease so I could work with my caregivers, from the person cleaning my room or delivering food, to the nurses, to all of those on my Oncology Team, to develop trust and to work together daily for a better outcome.
As we all know, there are things that one can control in ones life and things that one cannot. I could not control my disease but I thought in working together with my oncologists we could have control over the type of drugs that I could use to help combat my disease. So it was a rude shock to learn just prior to my first chemotherapy that the drug of choice, Daunorubicin, was one of the many drugs in short supply Nationwide and that it would be several months until more would become available. Knowing the importance of obtaining this drug for my treatment immediately, the oncology pharmacist worked swiftly behind the scenes to search and secure the last dose of Daunorubicin at Barnes for me. My experience was emblematic and covered by the St. Louis Post Dispatch to bring awareness and attention to the continuing National Drug Shortage Crisis affecting medications for a wide variety of illnesses for so many patients in need.
I never expected that my little hospital room would become a place to think, reflect, connect and reconnect with all those who I have known in my lifetime. People reached out to me, some accidentally, some intentionally, but all heartfelt. Some apologized for hurts incurred decades ago, of which for me I had forgotten and already moved on, but I was glad that our long overdue communication enabled them to finally move forward in their own lives.
So what else helped me do that ‘heavy lifting’ in the hospital and kept me thinking about what I would or could do the next day, and then the next?
I drew strength from gazing at photos of my family and drawings from my little cousins in the middle of difficult times day or night.
Brainstorming with my daughter Alana, who at the time was a Wash U student and volunteer in the pediatric Oncology/Hematology Department at Children’s in St Louis about art therapy projects she could do with her patients and then getting to do those same activities with her in my room afterwards.
Never being alone for Shabbat, or any Jewish holiday for that matter. Someone was always with me and we joined with family and friends via SKYPE, sometimes repeating b’rakhas due to different time zones. The electric pair of Shabbat candlesticks that the hospital provided for me whose incandescent bulbs cast a brilliant warmth that even the nurses loved and looked forward to each week.
Finding High Holiday clips on YouTube with the same inspiring melodies we sing in our Minyan.
The Sukkah I could see from my hospital room window being built in the covered courtyard below was so absolutely inspiring and provided me with a real feeling of normalcy and connection to life outside of the hospital and better yet, being able to go in to the Sukkah last year during one of my check-ups.
The Hospital Rabbi Dale Schreiber who seemed to appear at just the right moment and always have something engaging and distracting to discuss.
My cousin Yaira who had for several years contemplated what she would wish for on her 11th birthday at 11:11am deciding that instead of wishing for something for her wished for my health and strength.
The noisy helicopter shuttling back and forth from the hospital roof was a constant reminder that people were working to bring life saving stem cells, organs or hospital care to those in need.
Just knowing that so very many people cared and reached out in so many different ways.
In preparation for the 20th Annual Patient Celebration, I was asked to be part of a video to be shown at the Gala to talk about how I felt to be able to meet my donor. I said that it is not possible to put ‘thanks’ into words and that the only thing that I can do to thank my donor and everyone, is to be here another day so I can somehow ‘give back’ to my family, my community to the world.
At this same time, a PBS producer from Florida started to work with one of my physicians to bring awareness to the desperate need for Stem Cell Donors and is currently involved in making a documentary titled ‘ Whatever Happened to the War?’ That is of course ‘The War on Cancer’ coined by Reagan. The opening scene of this documentary will be me meeting my donor this past August and the closing scene will be the 21st Annual Patient Celebration Gala in August 2014. I definitely plan to attend!
Sometimes it happens that someone begins to tell me of a difficulty that they are having and they stop and interject that their difficulty pales in comparison to what I have experienced. I am quick to correct them and remind them that we all come across hurdles and it is not the ‘height’ of the hurdle that deems it more or less significant to ‘clear’ and that collectively, as part of our caring community we can ensure that each of us helps the other to continue along our individual journeys together.
I want to thank you all and for all to know how you have so positively impacted myself and my family and to remind ourselves that such seemingly small gestures such as a smile, a wave or a friendly greeting, can be the spark for an interaction that positively affects some one for the moment, the day, or for the course of his or her life. G’mar Chatimah Tovah, May you be sealed in the Book of Life!
