They tell you to pack your bags, but you are not sure what to take along. A Tehillim and a package of tissues are a good place to start. Important medical papers are a must and a compact toothbrush may come in handy.
And then there’s the shopping list, a little unusual. Never mind the weight, you’re traveling to a different planet now.
When a loved one becomes ill, it’s like landing on a new planet, one so different from the one you lived on before.
When we first received the diagnosis, it didn’t really register. ALS is hard to describe and doctors hesitate to paint the whole picture as the disease progresses differently in each patient. We immediately registered at the Neurological Clinic in Hadassah Medical Center where a special unit for ALS had been created. The staff, headed by Dr. Marc Gotkine, were patient and caring.
Attached to this unit was Anat, a wonderful social worker from ISRALS, the Israeli organization dedicated to helping ALS patients and their families. At each session, she gently prepared us for the future, giving us clear guidelines on how to proceed. Its motto is “hope is stronger than fear.”
Still, there was no way to be completely ready and the unexpected became the norm. Daily functions, which we had always taken for granted, now became a challenge. I say we, but I was the bystander, painfully watching as my husband bravely struggled to remain independent. Never complaining, he accepted his lot even though he had done much more research than I had, and knew what was coming. I never heard him question why this happened and when people came to visit, he always had a smile. And thus he remains, until this very day.
R’ Dovid’s greatest love in life was learning and teaching Torah. Throughout this period, almost up until the time when he had to undergo an emergency tracheotomy, he taught in our home – practical Jewish law and insights on the weekly Torah reading to women and the laws of kashrut to a group of young men who were preparing for the Rabbinate. It hurt when he had to stop.
About three years ago, R’ Dovid’s struggle with ALS took a turn for the worse. Almost without warning, his breathing capacity decreased to the point where he needed an emergency tracheotomy. After a month’s stay in Hadassah, we came home to a new reality. Almost completely paralyzed and permanently connected to both breathing and oxygen machines,
R’ Dovid needed 24-hour surveillance and help in all areas of daily functioning.
In the beginning, we continued with one caregiver while my older children and I took the night shift. However, staying awake all night and then going straight to work or school in the morning proved to be debilitating. On the verge of collapse, we hired additional help, not covered by government insurance. In fact, insurance covers less than half of the cost. When we found ourselves sinking into debt, we had no choice but to set up a fundraising campaign. These funds, donated by caring people from around the world, enable us to provide our beloved husband and father with the best of care at home, surrounded by his loving family.
But, sorry, I am drifting. I started off describing life on a new planet. Oh, yes, the shopping list. Not exactly like the one for the supermarket or the one you give your relative who is coming from the United States. This one included a ramp from the street to our apartment, the latest features of electric wheelchairs, nursing tables, oxygen machines, hi-low office chairs, the Yad Sarah catalogue alongside websites of technicians who could design all kinds of gadgets, anything to give R’ Dovid more quality of life… and some happiness.
The “to do” and “to learn” lists were just as long. I had to learn the “ins and outs” of a myriad government agencies, the Ministry of Health, the National Insurance Institute, the Immigration Office, etc. I had to learn how to administer medicines, operate machines and give injections and, believe me, the one thing I never wanted to be was a nurse.
Do I sound like a superwoman? Well, I wasn’t and still am not. I do, however, possess a secret weapon sent straight to me from Heaven, because G-d never leaves you alone. The weapon is called people or, in other words, family, friends and even complete strangers. Without them, I would have sunk a long time ago.
My children and children-in-law, led by the sterling example of our oldest, stood solidly by our side from the outset, changing work schedules, leaving their own families for days and nights, dealing with bureaucracy and doing anything else that was required. Our extended families as well have helped in so many ways, even from across the ocean. One distinguished and very busy rosh yeshiva never misses a Friday visit to bring joy to R’ Dovid, even when he has just stepped off the plane. Old friends from all over the world came to our rescue, giving of their time and money just when it seemed that we would have to give up.
The wonderful community we live in comes forth with endless offers of assistance. Accepting help is not easy and very humbling. My neighbors, however, insist that I was doing them a favor – at times they almost convince me!
My close friend brought me rice and potatoes from my neighbors “up the hill” for over a year. When things were a little calmer, I felt it was time to stop. A month or so afterwards, she met me in the store. “Do you know,” she said, “the week I stopped bringing you food, our 20-year-old car finally died. We really need a new car, so can you please let me start bringing you rice and potatoes again?”
As my son’s bar mitzvah approached, I did not know how I was going to handle it. It turned out that I really did not have to. The entire bar mitzvah was designed and executed by loving friends. “No problem, it was so much fun,” they said. (They stayed up half the night to set up the buffet and got up at six in the morning to lay out the Kiddush, done gorgeously in silver and blue.)
And, of course, there is our beloved Bikur Cholim head, who has an antenna hidden somewhere in my house through which she is able to pick up exactly what I need. She never takes no for an answer. One day, I am going to write a cookbook dedicated to her and all the other wonderful women who insist that “my family loves this dish and they are so happy that I am making it for you and them as well.”
Forgive me for not being able to mention everyone. Not only your acts of kindness, but your kind words as well are stored forever in my heart.
And then there are the strangers – and here is where I discovered something that just floored me: most people are intrinsically good! It is just not possible that I just happened to meet all of the nice people in the world, because almost everyone I met was nice.
The workers at the National Insurance Institute guided and encouraged me every step of the way. Taxi drivers took my number to find out helpful information and actually called me back! Total strangers from all over the world opened their hearts and pocketbooks. An untold number of top doctors and professionals did and still do not mind when I pester them, even during their vacations. We have also been blessed with dedicated caregivers, who, even though they are far away from their homes and families, always show patience and truly care.
I will never forget the words of the young Arab nurse who was assigned to our case when R’ Dovid had to be hospitalized. It seemed to me that she had just finished nursing school and this was her first time on the ward. She made some error and I must admit that I was not very nice about it. Later, I apologized, explaining that I was dealing day and night with a life-threatening situation and was a bit stressed out. She could have reacted coldly, but instead she said words that warmed my heart, “I admire your dedication. I believe it is your religious beliefs and your faith in G-d that give you the strength to deal with this.” Those words actually gave me the strength to go on. I wish I had written down her exact words; she said it so beautifully.
In the hospital there are no politics, no disputes over land, no ideological differences, just good people who want to help. It gives you something to think about. If all the wicked and selfish people would just leave us alone, we could live in peace.
And oh! About that planet. Well, I have to tell you a secret. The truth is it’s not really a different planet at all, it’s our very own. Not the side that the newspapers write about, but the other side, the beautiful one full of beautiful people. And it has been my pleasure to write about the place that I have come to know and love: Planet Earth.
One lesson I have learned over the past few years is the power of kindness. Kindness is a mindset. You don’t have to be rich or powerful, you just have to train yourself to think about others. Sometimes a small deed, one kind word or a smile can save a person. We have included this idea in our web spot.
Please pray for the speedy recovery of Dovid Yehoshua ben Leba Malka and all ALS patients.
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If you would like to help the Frid family to continue providing their beloved husband and father with the care he needs, please visit www.youcaring.com/medical-fundraiser/father-of-8-with-als/241499.