Dearest Kay, Jerry, Lisa, Tom, Christina and Brian,

I share your grief at this sad time.  I was moved today by my love for Marc and your family to write some of my thoughts.  I hope this helps you to find some measure of comfort.

With love,

Murray

A precious soul.  A beautiful soul.  A precious and beautiful friend.

They say that the eyes are the windows to the soul.  I would have to say that in Marc’s case, his eyes and his smile were the windows to his soul.

I was greatly saddened today (at about 2am Israel time) to learn of the passing yesterday of this great soul, my friend Marc Giorgio.   Marc came from an extraordinary family, who, while totally consumed with the care of Marc for many years, never forgot the people around them.  Kay, especially, would reach out, not only to the extraordinary medical staff who took care of Marc round-the-clock, but to others who she did not even know (one example, the homeless who rode the subways in NY) who needed help.  Of course, Kay and Jerry were there for their friends, even as they were constantly there for Marc’s needs.  

I first walked into Marc’s life over 13 years ago, in the Fall of 2004.  I was to be his homecare physical therapist.  Marc, having Cerebral Palsy and developing hydrocephalus as a young child, was now, at the age of 39, having some increased motor problems, such as weakness in his legs which was causing him increased difficulty getting up out of a chair and walking.  His case was assigned to me.

I remember my first time at the Giorgio residence.  Kay was standing at the top of the inner stairs as I entered their home for the first time.  A home attendant, Claudette, who helped Marc in the afternoons was also there.  I remember Kay asking me if it’s OK to watch my PT session with Marc, and I responded that it’s OK with me if it’s OK with Marc, who readily agreed.  From the beginning, this was a family affair.

Kay and Claudette sat quietly as I got to know Marc that day, and started to devise a therapeutic plan for him.  Even though Marc was 39 years old, given his underlying CP and his delightful childlike emotions, I realized that our sessions would be somewhat different than I might expect from another 39 year old, with say, some orthopedic issue.  Over time, despite his precipitous decline, Marc proved to be a wonderful patient.  It’s rare that a clinician is blessed to have such a wonderful patient, one who becomes a friend for life.  Here, I realized, I not only gained a friend but also became part of this special family.

Two months into our treatment, Marc seemed to be losing strength and function, not gaining.  He was finally diagnosed with ALS, otherwise known as Lou Gehrig’s disease.  A devastating diagnosis.  From diagnosis to death is usually 2 to 5 years, if you’re lucky.  The body declines, the brain remains intact.  The only muscles left in one’s control are the eye muscles.  Our treatment plan needed to change.  I decided to stay with Marc as his therapist as long as possible.  We would try everything to help keep Marc as functional and comfortable as possible, as the inevitable decline took place.

Months after my first visit, Kay confided in me a dream she had days prior to my meeting Marc.  In her dream, she was out in the garden with Marc, who was sitting in a wheelchair.  At the time of her dream Marc had not yet been wheelchair bound.  When it was time to go back in the house, Kay was able to get through the hedges, but she was not able to get Marc over or through the hedges.  He was stuck in the garden.  Just then, Kay spotted a man walking down the street, who she asked to help Marc get out of the garden and into the house.  The man, sporting a yarmulke and beard, was obviously an Orthodox Jew, perhaps a rabbi.  He said “sure,” and lifted Marc, wheelchair and all, over the hedges and into the house.  In the dream Kay thanked the man, and asked him his name.  He replied “Deemer.”   Kay, with the telling of her dream finished, then looked at me and said, “Mur – you will be Marc’s redeemer.  You were the man in the dream.”

Unbeknownst to me that first day I walked into the Giorgio residence, Kay and Claudette were astonished to see me, an obviously Orthodox Jew, a rabbi, with my yarmulke and beard, walk into the home to become Marc’s physical therapist.  The day before, Kay had shared this dream with Claudette, but at the time it seemed nonsensical, out of context.  The Giorgio’s were an Italian Catholic family, with little connection to Orthodox Jews, let alone rabbis.  Now here he was, the man from the dream!

Our connection was obviously meant to be.  It was no accident that I was assigned to Marc.

I soon got to know a whole group of friends, as well as family, who surrounded the Giorgios.  There were great old friends, like Fran, who came every Tuesday to visit, bringing a movie video that she would watch with Marc, while she enjoyed conversation with Kay and Jerry as well.  There were friends from their Mt. Vernon days, who would come in every so often to visit.  There was a wonderful nursing and home attendant staff, which changed over the years.  Some amazing people.  Victor, Marc’s latest and longest running RN, is at the top of the list.  Claudette, Ventrice, Dorothy, Kofi, Jayson, among others.  All became part of the Giorgio family.  And, of course, Marc’s sister, Lisa and her family, who loved and supported Marc.

As the months changed, Kay and Jerry saw to it that each holiday in turn, major or minor, was celebrated with decorations, food, friends and festivities.  All for Marc’s benefit.  Marc loved all the holidays, from Christmas to Valentine’s Day.  Each holiday brought a new smile to Marc’s face. 

Marc loved playing a particular game on his computer.  Over the years, his computer needed to change from a regular computer to a special Dynavox laser eye-tracking and eye-controlled device, that could serve as a computer and a communication device.  Although it became difficult, Marc could still hold a computer mouse and, even if he could not move the mouse anymore, he could press the button on the mouse to play his game.  After my cervical spinal surgery in 2013, I could no longer be Marc’s therapist, and so I arranged for two outstanding therapists and human beings, Kathy and Krista, to continue to see Marc.  Among the many other things they did for Marc, they made sure that he could continue to play his game, which he so loved.

Over the years, Marc and the Giorgio family came to know my family.  Rena, our children, who were already adults, and some grandchildren, would visit Marc occasionally.  I’m very happy that my family was also involved with the Giorgios, for many reasons.  Kay and Jerry became models for us of selfless giving.  We will all cherish our memories, and we have some beautiful photos to remind us of those times.

Whenever I came to Marc, he would have the biggest smile in the world for me.  I loved his smile.  I think everyone loved Marc’s smile.  His eyes would twinkle.  His whole face lit up in that smile.  When he was still able to speak, Marc would ask me how I was, then how was Rena, and then he asked about each one of my children in turn.  I often showed him the latest pictures of my children and grandchildren, which he took delight in seeing.  As the years passed and Marc was no longer able to speak, he communicated the same questions to me by mouthing the words.  He would respond to my questions by blinking once for “no” and twice for “yes.”  It was all accompanied by the greatest smile.

And his laughter!  Marc could not speak, but boy could he laugh!  We all loved hearing that delightful laugh.  Many things tickled his funny bone and Marc would laugh easily.

Marc was one of the happiest people I’ve met.  Confined to a wheelchair, a trache in his neck, a machine assisting his breathing, not being able to take any food or drink by mouth and fed through a tube in his stomach, unable to move his arms or legs, and in the later years unable to speak – he enjoyed life.  He knew how to take delight in the small things, to appreciate each moment - his music, a movie, his computer game, visits from friends.  In the years that I have known Marc, and I saw him as his therapist 2 to 3 times a week for almost 9 years, I do not recall even one occasion that I heard a negative word from him, nor a complaint about anything.  And if anyone had reason to complain, he did.  He was a model of the way we should all be when faced with life’s adversity.

It’s a cliché, but as much as we gave to Marc and took care of him, he gave back to us.  I hope Kay and Jerry, the entire family, and all of Marc’s wonderful caregivers will find some comfort in the special spirit that Marc gave to each of us.  Marc – We love you.  I know that you will have a special place near God’s throne and that your smile will light up Heaven.  I know that you will have peace.

Murray Schaum