The day does not pass in a blur. It passes slowly, slowly, a microcosm of my father’s illness of the past 25 years. I get the phone call and crumple. My flight is not until one in the morning, and it is only three in the afternoon. I pack, clean up from lunch, do laundry, do more laundry, rearrange the toys and take out the garbage.
Time passes slowly, slowly. The baby squirms and wiggles and cries the whole flight and I resent him, my husband; everyone on the flight who is not my mother. We land and inch along in the painfully slow traffic.
My mother calls. "He's still here, Dina."
"Oh--"
"He's waiting for you."
But he is not waiting for me. Or at least, he is not only waiting for me. Because I hug him and kiss him and cry and tell him I am here and I love him. His mouth gapes, bloodied and sore. His eyes are open, glazed and unseeing. Or maybe seeing everything.
But still, he waits.
He shouldn't be here, the doctor says. No one can live with failed kidneys and their lungs filling with blood. He is brain dead, he says. He had two cardiac arrests and is bleeding out from everywhere. He is not really breathing, the machine is.
Don't unplug him, comes the startling answer from the Rabbi. Do everything you can to keep him alive.
Is he alive? I keep feeling like he is going to turn to me and smile.
My parents had a vision of the kind of household that they would run, and they worked together as only those who love each other very much can to make their dream a reality. My parents’ house has four doors, one on each side, like Abraham’s tent, and fittingly, I grew up alongside people who started off as strangers and ended up moving in. So many people refer to my parents as “Ima” and “Abba,” it’s hard to differentiate between their biological children (and there are many of us!) and those who became honorable members of the family. Ours was a home full of music and laughter and love, just as my parents wanted it to be. Then, when I was nine years old, my father was diagnosed with an illness that crushed their dreams to dust.
My father had been sick for almost as long as I can remember.
Almost.
I can call little overused memories to the surface of my mind, memories of walking down the street holding my father’s hand, pride in my heart, knowing how people looked at him, so tall, so handsome. I remember being held against his chest when something frightened me, listening to the steady beating of his heart and knowing that in his arms, nothing can hurt me.
My father has not been able to hold me in his arms for many years now.
I wish my father could embarrass me like that again.
I remember my father standing in the hallway of my elementary school, reading a poem on the wall out loud to me. “Dina! Listen to this! ‘A smile,’” he read, “’costs nothing but gives much.’” Girls walked by and stared as he went on to read the whole thing, and I wanted to melt into the floor.
I wish he could embarrass me like that again.
My father’s legendary heart is encapsulated best when he brought home a woman and a child late one night. She was a single mother and new in town. She was lost and alone. They stayed in my house for months.
Money needed for our rusty station wagon went to fund a needy family. To my father, everything we owned was viewed in terms of how it could be shared.
We hosted Jews from all walks of life at our table, and my father, a baal teshuva himself, never lectured, never delivered thundering speeches. He was a quiet man, a sensitive man who would cry when reading children’s stories to us, and we would run, giggling, to get him tissues. He changed people’s lives by leading a life of Torah with his heart on his sleeve.
We sing a lot to him. The nurses don’t mind; not in this ward. We sing the old songs, the ones we grew up with. The ones we remember dancing to with him after Havdala every motzie Shabbos. I say Psalms and daven slowly, carefully. There is no rush. I have nowhere to go.
This time that I have with him is an unexpected treasure, one last gift from him. So I tell him everything. I tell him about my hopes for the future. I tell him about my plans for now. I tell him about my pitfalls, how my selfishness gets in the way of me being who I want to be and how I wish I was more like him. My siblings come and go. We are sad, but we are altogether, and a round of “remember when?” ends in ringing laughter. Some visitors do not know what to make of this, the laughing vigil, and honestly, I don’t know what to make of it. There is no place in my mind to put this.
His eyes look lifeless, but his soul is here, right?
He is here. He is not here. I want him to live forever. I want him to go; it’s just too much pain in a lifetime of pain. The vacant eyes, so dry from being open for days at a time, the mouth a hole where his smile used to be, and the feeling that he hears every word I am saying...
I call my daughters, ask them about their day. They sound so mature on the phone. They ask for presents. I promise presents. I am 6,000 miles away from them promising gifts and love and then hanging up on my children while I am walking the streets of New York arm in arm with my sisters waiting for my father to die.
Then he got sick, and his digression was slow and incredibly painful to watch. Chronic Progressive Multiple Sclerosis, the rarest of all subtypes of MS, is like dying in slow motion.
Chronic Progressive Multiple Sclerosis is like dying in slow motion.
My parents tried their best not to let it change anything. We still turned up the speakers full blast every motzie Shabbos and danced around together in circles. We still invited a million Shabbos guests to our table. We even took in foster kids. Meanwhile, my big, strong, handsome father regressed from walking shakily to walking with a cane, to a walker, to a wheelchair, to a bedridden paraplegic, then paralyzed to a degree that is hard to describe. He couldn’t move his arms or legs. He couldn’t wiggle his fingers and toes. He couldn’t see. He couldn’t talk. He couldn’t eat, and finally, he couldn’t even breathe on his own.
My parents tried everything. They flew across the country to specialists. Nothing helped.
I am a mother now. How did my own mother care for my father, work full time to support us, and still maintain the household and give each of us the attention we needed? I know that sometimes she must have been crying on the inside, but both of my parents were determined to maintain their dream household. Though it wasn’t — it couldn’t be — the same.
My father let go of his pain, his grief, his questions and incredibly, he was able to do what he loved best: to give. His quiet acceptance of his physical state, his constantly playing cassettes of Torah lectures and praying by listening to my brother’s chanting on tape the morning service gave inspiration to all who knew him.
If you ask anyone what they bring to mind when they think of my father, they will tell you it was his ever-present smile.
The rain falls in sheets out the window next to his bed.
“It’s so...” my mother begins, searching for the word “appropriate.”
“Corny?” I supply. “I know. I already told God.”
We all laugh until tears came. It was so corny, the rain, on the day my father died.
My brother said viduy, the final confession, and my sister and I sang his favorite song — mitzvah gedolah l’hiyot b’simcha — it’s a big mitzvah to always be happy — as the line on the monitor went flat. His face did not change as he died. Nothing changed. It had just been his heart — as always — that had been keeping him alive.
And it is his heart that we will remember.
And the fact that, cliché as it is, as he died, the angels cried.
My father realized, long before the rest of us were granted the acceptance, that he wanted to do so many mitzvahs, but they were not the ones that were wanted of him. He wanted to sacrifice for God, and God demanded a very different sort of sacrifice.
And my father gave God what was asked of him.
My father gave Him his smile.
A version of this article originally appeared in Ami Magazine.
(31) Aviva, June 21, 2015 6:33 PM
Remembering Barry
Barry was a good friend when we were teens. He was gentle, loved to laugh and loved music. He taught me to play guitar. Your parents came to my wedding and I shared in their simcha as well. Your father's smile and his clear light blue eyes made him quite attractive. One of our friends described him as looking like Superman- tall and handsome and able to take on the world. Your mother,Yoni, was a tower of strength and an Aishet chayil par excellance. I am forever grateful to your aunt Beverly for inviting me to sheva brachot at her home so that I could see your parents and celebrate a simcha with them. At that time your father was able to reminise with me about our friends and our teenage years. I'm so happy for that memory. Tehi Nishmato Baruch.
(30) Yehiel Cohen Meghory, February 26, 2012 3:08 PM
He reminds me of my father!
As I read your story it moved me to tears. It reminded me of my father who had passed away 35 years ago and is till remembered by his many students. Both our fathers have changed the world for the better. Thank you for reminding me once again. Yehiel
(29) grandmacarol, February 9, 2012 11:21 PM
Beautiful
I'm not Jewish so I don't understand the exact meanings of many of the words used, but I do understand what is meant, just by the context. I wanted to tell you how very moved I was by your amazing story of your father. I have family and friends who are Jewish and that's how I found this site. I so often find stories that go across belief or religious boundaries and this is one of the most meaningful I have ever read. That your father was loved is a given. That his smile was a gift can be seen in the photos you chose for your story. That he loved all people regardless of standing or need is understood. The world is a much better place for him having lived in it. May you and your family and all those who loved him find peace and comfort in having him in your life and in your beautiful ability to tell those of us who didn't know him, his story. Thank you.
(28) devorah, February 6, 2012 2:44 PM
WOW!
WOW! powerful!!!!! the tears dd not stop streaming down my cheeks- may you all be comforted and have all your tefillot answered for the good!
(27) Anonymous, February 6, 2012 5:01 AM
thankyou so much for submitting your touching story about your father. Ny father passed away in 2009 from his progressive desease of muscular dystrophy. My father also had a smile on his face eventhough he was so sick. At the end he was on a ventilater and a feeding tube. Despite all this, he davened and learned torah with every ounce of the the little strength he had. As tough as it was to see, it was at the same time in. spirationalOur fathers should be a strong meilitz yoshar for all of us.
(26) Ellen, February 5, 2012 1:39 PM
Keep This Post Up Forever
Hello, Dina. I heard about your post at a Shabbos table this week. What a treasure. Indeed, Hashem had "other" mitzvos in mind for him to do. People did bikur cholim, people learned other stuff than what they would have learned, people learned not to take their bodies for granted. What gadlus. I'm glad your family had the goodbye that you describe. And oh, little understatement, your mother's role in all of this, things I can't put into words. A million memories. We who knew him miss him and learn from his life. Who could sit next to your father, and see the zounds of pictures in the living room that showed life as it "changed" -- often at simchos -- and not respond? I'm grateful that I knew your parents "before." And even more grateful that I knew them during. Thank you for sharing your memories with us. This is a precious piece of writing indeed.
Elliesheva fine, February 6, 2012 9:11 PM
No words can express
I knew you when you were young. I am filled with gratitude for having known your parents and by their example my life is forever enriched. The words thank you do not do justice to what this essay means to me. With warmth, Elliesheva
(25) Moshe Cohen, February 2, 2012 4:08 AM
I remember him fondly
We lived around the corner and davened in the same shul. Your father was a special person. Tall, handsome, soft spoken, full of simcha. Thank you for sharing. May you all be comforted.
(24) Donna Perel, February 1, 2012 1:41 AM
You are so blessed
May you always see the blessings that your father gave to you when he was in this world. He and your family are very special. May you always see the tov.
(23) Michael, January 31, 2012 7:05 PM
Your article in itself is a wonderful gift to a lot of people.
Hi Dina. Your parents are a shining light to this world. How privileged are you and your siblings to have such amazing parents! I know it pained G-d, too, to see your father go, but I guess your father's mission on this earth has already been accomplished. Oh how I wish that he had lived much much longer (minus the illness) so that he could touch more lives. It is a treasure to have people such as your parents on this earth. But I guess our Father in heaven knows best, and even in death your father would still touch more lives through his life story.
(22) Anonymous, January 31, 2012 3:34 AM
Hi Dina, I felt as though I had written this article when I read it - although my father did not have CPMS, he collapsed one day and was in a permanant vegetative state for a year and a half and then passed away. Your father sounds like an incredible man, and I'm sure my father would have got along very well with him as they sound so similar. Its beyond painful.I think what gives strength is his memory and constantly trying to think how to emulate him and his incredible middot. Wishing you the ultimate nechama that only Hashem can give.
(21) Melanie Mintzer, MD, January 30, 2012 9:36 PM
Thank you for writing about your father
This memoir is quite meaningful to me personally and as a physician. You capture the amazing spirit of a man who lived with his illness rather than suffered through it. I will use it as an example with my patients and their families. Todah Rabbah
(20) Sara Yoheved Rigler, January 30, 2012 9:18 PM
A moving, inspiring article. How great your father was! How great your mother is! How great is the legacy he has left you!
(19) Yitz, January 30, 2012 8:23 PM
After years of making you cry, I kind of deserve one back.
Dina - I mentioned to many people that there are no words that can be used to describe Abba. It would seem like a perfect coincidence in that whoever was lucky enough to know him, knows that he was never really one for words. As you so accurately put, he " never lectured, never delivered thundering speeches". He was what one might refer to as an Ish Ma'aseh (man of action) and of course while always wearing that warm smile. He only practiced, never preached. That being said however, If I had to pick words to give someone a microcosmic peek into his life, I would pick your exact words. So soft yet so powerful. When he was still with us you always made him proud and now, as you continuously use your many talents to inspire people for good and help bring about kidush shamayim, I can close my eyes and see his lit up face smiling at you. Your brother Yitz
Rivky Kolodny, February 2, 2012 2:03 AM
AMEN
Yitz - you brought fresh tears on top of Dina's..... you summed up my thoughts so well! Dina put together a poetic mosaic of Abba's life.
(18) Rivka, January 30, 2012 12:41 PM
Inspirng
I have never met u and yet I feel as though u r speaking directly to me. Truly inspiring. May u see only good things in the years to cone.
(17) Malki Hockman, January 30, 2012 8:29 AM
Hamakom Yenachem Eschem
Dina, Hashem should give you a true Nechama.
(16) Avi, January 30, 2012 6:08 AM
My Chavrusa
I learned Mishnayos with him a couple of times, even played guitar for him once. The one thing that made an impression on me was his smile. It was angelic. It transcended me, but was clearly for me. For the profound physical pain he must have felt, the smile was absolutely effortless! It was as if his love for humanity absolutely outshone everything else ... nothing else mattered. Our world is bereft of that smile, and our world can't even begin to comprehend what that really means. It's my commoner's blessing to you, and all his loved ones, that he continues his legacy through you - that you take on his example, and live your lives as he would have lived his. In my humble opinion, you truly can fulfill "zacher tzaddik l'brocha", simply by emulating his smile.
(15) Yehoshua Solomon, January 30, 2012 4:56 AM
What a zechus!
As a musician, I had the honor of entertaining numerous times for your father. No matter how much pain he felt, he always managed to grin as a way of showing appreciation. It was very moving. May your family only share in Simchos!
(14) rikki, January 30, 2012 4:04 AM
I as there and saw it
I have been at your house a number of times over the years. The pain and suffering your father went through and the way every family member was ALWAYS there for him was amazing. Your mother always had my deepest respect. She was living a life of no other and she did everything in her power to make your home the most beautiful place to be. Lastly, no one could miss how special you were in your fathers eyes. I saw it. As much as your parents were there for others, you children were their pride, joy, and beyond.
(13) Anonymous, January 30, 2012 1:14 AM
Thank you for being open in sharing your life with others in a way that is so Mechazek!! May Hashem give you continuous Chizuk to continue staying strong and following in your father's lofty ways.
(12) moish basch, January 30, 2012 1:03 AM
it is said that each generation is lower than the last.this is a result of being another dor away from maamad har sinai.after reading this article about dina'sfather--the midos tovos,love of people,and the way he accepted his illness with a smile---i am blown away and realize that there are people in every generation that have the ability to spring higher and be on a par or even greater than tzadikim of previous generations.may we all learn from this exceptional human beind and i am sure he is being mailitz yosher for our generation.
(11) shani, January 29, 2012 10:37 PM
thankyou
thank you dina, for sharing such a deep part of you. i hope to take a lesson from you, your family and your father. hamokom yinachem etchem bitoch sha-ar avley tzion biyerushalaym.
(10) Shoshana Kruger, January 29, 2012 7:06 PM
Wow!
From the moment my daughter, Yocheved, became part of your family, we sensed the specialness of your parents. The way you all took care of your father was a true Kiddush HaShem...and that will never die.
(9) Anonymous, January 29, 2012 6:52 PM
Todah
Alef todah for sharing this poignant, passionate story. Your father's life is a great inspiration. His commitment once again purs perspective on life. May you carry it on.
(8) ruth housman, January 29, 2012 6:23 PM
smile, an everlasting smile... the Rolling Stones
We cannot answer why some things, very deep, very painful, as this illness happened, to your Dad. And it does feel like a kind of sacrifice, and maybe one certainly not consciously taken, for who would ask for this? And yet, love was present everywhere in the presence of your dad and you described his smile as infectious and his great generosity as being beautiful. Who is to know? There are different opinions about what is merciful in terms of keeping a person alive, when it seems they are in other ways, no longer there. I have my own feelings, and I do not need a rabbi to tell me how to act, but my own heart, in plumbing what feels right, what feels like mercy. It rained when he died, and maybe he was supposed to die that day. We can never go backwards in our decisions and I do believe our days are numbered. I see the rain, so often as G_d's weeping, and I see the aural connect with He Reigns. And within the word Rain itself I see the sun, as in RAY..N. I know. I really do know, that G_d, the Master Storyteller, wrote us all into the most amazing story EVER told, and this is deeply about LOVE as in this most loving memory. Yes, what can happen when we smile at each other, and inwardly. A beautiful article about a beautiful man.
(7) blima, January 29, 2012 6:13 PM
Your family was there for me
Dina I am so moved. Your parents opened their home to me. I will never forget the love I saw
(6) Judy Moran, January 29, 2012 6:09 PM
Thank you for sharing
Thank you so much for your generous, heartfelt conversation about your father. I am 63 years old; my mother died unexpectedly in 1985, and my father died after two years on dialysis in 2002. As silly as it sounds, I feel like an orphan. No one can ever take the place of good parents. No one will ever love us unconditionally as much as they did, and no one will know all about us like they did. It is a wonderful thing to have memories to fall back on, and I try to share them as often as I can. I usually apologize if I cry during the conversation, but to not talk about them at all is to pretend they were never here, and that is not an acceptable choice. My heart goes out to you for your loss, but it is also lifted by the joyful memories you have. Thank you for sharing yours --
(5) Chavie, January 29, 2012 6:08 PM
A true tzaddik!
I heard your mother speak on kol haloshon. She is an aishes chayal. When I saw the picture of your father, with his beautiful radiant smile it reminded me of my brother who also suffers from M.S. and also has a beautiful smile despite his horrible suffering. Hashem should send you a nechama and may your father's legacy continue to inspire.
Anonymous, January 30, 2012 8:56 AM
Investigate Dr. Roy Swank's dietary treatment for MS
Dr. Roy Swank of the University of Oregon neurology department had a very successful dietary plan for MS. He used this plan to treat a few thousand patients and had very good results. It's worth a try, it doesn't cost money and it has helped many people! You can find information about it on drmcdougall.com as well as a few stories of women who have ms and are doing very well on this plan. Refua Shleima!
(4) cindy mytelka, January 29, 2012 4:43 PM
beautiful
I cried so hard, it took me so long to read, I couldn't read through my tears.. I could never fathom how your parents coped, showed such strength, and lived with so much simcha, even when your father was well, never mind when he wasn't. I have never met people quite like them. Your father left a legacy for you kids that is unequaled. B'ezrat"H, your mother should live for many more healthy years, and should have menucha and a lot of nachas from the beautiful family that came from her and your father. I, having lost both of my parents, struggle to recall the memories of when they were well. My bracha to all in the family is that you are easily and often able to remember with fondness and respect all of the happy, inspiring, and wonderful times that you had with your father. Those memories should hopefully be a source of nechama happiness, and teaching for yourselves and your children. I am sure he is so proud of all of you, he always was, he always will be.
(3) vicky, January 29, 2012 3:43 PM
I hope you will write more stories about your father. This was incredibly moving and meaningful - and the pain, strength and courage that you and your family experienced is vivid here. What a special man to bring home people from everywhere and have them stay in your house - I am sure this is one of so many stories. please keep sharing.
(2) Rachel Levin Weinstein, January 29, 2012 3:12 PM
Oh my... I was one of those guests for many years and I remember nearly everything you described Dina- in fact, I remember you as you were in the picture of you and Dad in the article. Your parents are and were special people, but then so were all of you to let so many people in and out of your home and lives. I too hope that I make Dad proud. And I distinctly recall looking at your parents as models for the kind of loving couple I hoped to be a part of, and have blessedly been a part of for over 17 years. Please, please send mom and all my love, my sympathies, and gratitude for all the Shabbatot she served carrots, assorted other veggies, and topped it off with my fav- brownie cake!
(1) SaraK, January 29, 2012 1:58 PM
Dina, I am sobbing...
Beautiful tribute. Honored to be part of your family.
Aunt Bev, January 29, 2012 6:42 PM
Dina, everything you wrote was so moving and so true. It broke my heart also, to watch your Abba's suffering. Ema, all ten of you, spouses and of course 19 grandchildren is what sustained him for all those years. There was nothing that made him smile more than watching all of you light up his days the way each and every one of you did with your hearts and souls. Love you all and miss his teasing, jokes, sensitivity, kindness and of course his beautiful smile.