This article is based on a speech given by Rivky (Deren) Berman to a group of young adults shortly after she received a double lung transplant in 2011. Her positivity and intrinsic faith, as well as her love of family and friends, resonate with those who were fortunate to know her and those who did not. She passed away at the Duke University Hospital on May 29, 2016. The talk was adapted by the Ruderman Chabad Inclusion Initiative, of which Rivky recently joined as an advisory-committee member.
My name is Rivky Deren. Let me tell you a little bit about myself. I am one of eight children in my family. Four of us, including me, have Bloom syndrome.
Bloom syndrome is a rare disorder diagnosed in Ashkenazi Jews. The two main features are abnormally short stature and butterfly-shaped facial rashes after sun exposure. Other features may be chronic obstructive lung disease and a high-pitched voice. Another challenge that some people have is asthma, which restricts normal energy for even simple everyday tasks.
Because of my condition, I am also susceptible to viruses and have landed in the hospital very often. It has come to the point where the ER nurses shout out, “Hey, Deren! What’s up?” when they see me.
Because of Bloom syndrome I was labeled “different.” Being different in a negative way is not an easy life.
Life has been a challenge, a very big challenge. Sometimes, I just don’t know if I can continue . . . if I want to continue. And at that moment, that’s when I remember the things about life that help me get through these times; I think about the amazing, loving, supportive family I have. It’s not easy going into the hospital on 30 seconds’ notice. Yet every single time my parents are there, together by my side. My father, with his irrepressible and at times embarrassing sense of humor, asks the doctors who are trying to work on me to give me the biggest needle for my IV because that’s what I love most. My mother helps to get my mind off of what’s going on at that moment by describing long green meadows and the deep blue ocean. She buys me great funky cards that say things like “People who say laughter is the best medicine have never had morphine!”
Each of my siblings comes up with everything and anything that would keep me entertained and happy while I have to be in hospital. They constantly drop off a never-ending supply of food. They don’t stop for a minute because as long as they can, they are going to do everything possible to make something so hard just a little bit easier. Why? Because they care and because they love me, and for that, I can’t thank them enough!
On September 3, 2011, I became a new person! I was given a second chance at life. How so?
After months of intense testing, searching and physical preparation, I finally received a set of brand-new lungs! I became the recipient of a bilateral lung transplant!
Going through something like a lung transplant is no simple task. Even though I was told what to expect, I really had no idea of what I was about to experience. I arrived in Durham, N.C., with my mom on May 15, 2011, where we were scheduled to meet with a transplant doctor at Duke University Medical Center. I was excited, yet very scared at the same time. Had I known what it really meant to go through something like this, I don’t know if I would have agreed to it.
The countless doctor appointments, tests and procedures; the months of eating, sleeping, dreaming, walking and talking “transplant.” Unless you are really motivated, transplant is a process where there is no way a normal human can pull through.
So what was that motivation that got me through it all and still does today, as the challenges of being a lung-transplant recipient will be with me for the rest of my life?
In Chabad Chassidus, there is the well-known Hebrew teaching Moach sholet al ha’lev: “The mind rules over the heart.” Or, at least, the mind is capable of this.
This relates to another teaching in Yiddish: Tracht gut vet zein gut, which is loosely translated as “Think good, and it will be good.” As many of you may well know, my family and I have gone through many difficult times. Tracht gut vet zein gut became a common refrain in our lives.
Sometimes, this is on a simple level—starting your day with the attitude that it will be a good day can actually make that a reality. On a deeper level, we are taught that having this kind of bitachon—“trust,” “security” and “confidence” in Hashem—can actually help create the space for the good to happen. Even in situations where it is difficult for human beings with our limitations to see good, we can still find even small sparks of sunshine because we are confident that even if not right now, ultimately, Hashem will show us the good so we can see it with our own eyes.
Another way of saying this is that “everything ends up OK in the end, and if it’s not OK, it’s not the end.”
Psychology can give us the tools if the system needs fixing, but it is Torah, and specifically, Toras HaChassidus, that points us in the right direction and shows us where to go.
Our very own Rabbi Abraham Twerski tells a story of a man who brought his car to the mechanic. He told the mechanic that practically everything in his car was broken, from the wheels to the gears to the tires to the brakes. The mechanic agreed to fix it for the man.
When the man returned to pick up his car, he said to the mechanic: “Thank you for fixing it. Now where shall I go with my car?”
We have the tools to help us connect to G‑d, yet when we encounter a challenge, everything gets numb. You can’t move, you can’t think, you feel alone. There is a drink of water next to you; you pick that glass to take a drink, without thinking about the spiritual side of what you are doing. Yet when you make a blessing and begin to drink, you have just ignited the connection to G‑d.
When there are times that you can’t even do that, having the mindset of knowing that everything that G‑d does is for a purpose, even though we may not be able to see it right now, is helpful.
That reassurance that G‑d is always there—guiding and protecting us—relieves the feelings of isolation and loneliness, remobilizing and re-energizing me.
How do I know that it will be good? Because G‑d always comes through.
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