Obituary for Matthew Fisk (1957 – 2005)
On December 24, Matthew Fisk of Jamesville departed this earth. He was 48 years old. Although afflicted with Down’s Syndrome, Matthew was an unforgettable personality who touched the lives of many. His loving hugs and limitless sense of humor will never be forgotten by those who knew him. He was a resident of the Jamesville Community Residence for nearly a quarter of a century and was attended by a marvelous staff who watched over him in a way far exceeding the mere duty of professional care giving. In particular Ms. Vicki Sass, almost a second mother to him; his long time advocate, Ms. Carlise Nesby; Ms.Linda Szatanek; Ms.Cathy Procopio and his personal physician, Dr. James Traver, contributed immeasurably to his quality of life. Indeed he was for them and they for him, family. Matthew is survived by his father, Dr. George Fisk, and his brother, Eliot Fisk, a concert guitarist who has performed frequently in the Syracuse area.
Agnus Dei: Matthew Hamilton Fisk (Sept. 5, 1957 – Dec. 24, 2005)
My dear little brother, Matthew, died yesterday afternoon around 4:30 P. M. East Coast Time.
One of the nice people who cared for him at the marvelous group home outside of Syracuse where he lived so many years of his life with a fairly stable community of other Down’s Syndrome people, called me and said, “Your brother has just had an episode whereby he stopped breathing for ten minutes. They have done all the possible resusticatory procedures to keep him alive. At the moment he’s not responding to anyone so there’d be no point in your jumping in the car and coming to Syracuse.. He is still with us. He’s in an ambulance on his way to the hospital. We will call you immediately if there is any change in his condition. We spoke to your father, and he thought it would be best if we called you directly.” 15 minutes later, a second phone call… me still expecting to hear “He’s stabilized and should be OK.” After all this is Christmas Eve! Instead, the same kind voice, “I’m so sorry to tell you that your brother has died. I’m so very sorry…”
My dear little brother, so pure and so sweet, gone from this life forever.
Agnus Dei, qui tollis peccata mundi. “Lamb of God, who taketh away the sins of the world.”
Matthew!! My beloved little brother. Mommy always told me your name meant, “Gift of God.” That is what you were for us and for so many others whose lives you touched.
You are my first memory of anything, you coming home from the hospital in that little sky-blue baby outfit. How cute you were as a baby, that indescribable sweetness, innocence personified and touchable…
I remember how we got up in the mornings in the house at Herford Place, dew on the grass, sun shining and how I pretended to race you across the lawn to the swing set. I’d let you win, and then how you’d laugh! We’d be at the swing set for quite a while, and then we’d play in the sand box until I got bored. Then I’d bring you back to Mommy, all my good intentions of taking care of you for the whole day exhausted.
You died on Christmas Eve, just as I was going to call you. Why didn’t I just call a little earlier? I could have tried to speak to you one last time.
How you loved Christmas time, hanging the tree, opening the presents! Mom always killed herself for us. Come Christmas morning she would have fetched dozens of gorgeously wrapped little individual presents out of unsuspected crannies, and when we woke up on Christmas day, there they’d be beckoning to us in a great mound of color and light from under the tree.
We always tried to make your presents the most numerous because you loved opening them so much. And sometimes you’d take other people’s presents and open them too. But that was later, at the house in Syracuse…
In the early years in Philadelphia we faced the challenge of finding a school for you. “Mrs. Corbin’s”, a mile or so down Lansdowne Avenue was a first alternative. It gave Mom a small break for a while. But this couldn’t work for long. You were growing up, and the difference between you and normal kids was starting to become more and more apparent. There were no local facilities for people like you.
Sometimes when I was walking in the street with you, holding your hand, the other kids would stare at us and giggle. I wanted to kill them all, the lousy pigs, staring at you with condescension when they were the inferior ones! I would glare back trying to look just as arrogant as they did, but it hurt to think they could look at you like that. They didn’t know how soft you were, how much love was in your sweet, goodnight hug.
One time you escaped from the house and walked the whole half a mile through the woods all the way to that dangerous road that used to scare me to cross when I’d walk back from school trailing my too-heavy book bag. That one time you got out, some neighbor we hardly knew brought you back, and we all sighed with relief that no car had run you over because at that point the path out of the woods lead right onto the middle point of that awful road.
So we had to find a school for you. Even Mommy with her inexhaustible energy was simply worn out. The anxiety, the sheer physical demands of having to watch you every waking minute of every waking day was wearing her down. You had the strength of a 6–year-old without the instinct for self preservation. Daddy had to work, I had to go to school… we just couldn’t take care of you any more ourselves. Mommy and Daddy came to the agonizing decision to send you away to school. You were still so young…
So you started at Pennhurst State School a good hour’s drive from home. We would pick you up on Friday and take you back on Sunday afternoon. That drive back to Pennhurst always felt like a drive to the gallows.
When Mommy and Daddy first took you there, a man came in to get you, to take you to your new home, sleeping in a big room with a lot of other kids. As we discovered over time, many of the residents had to be sedated so that the overworked staff could have half a chance. That must have been an awful change for you. You always had all the repertoire of human emotion, all that without any of the cognitive faculty to make sense of the inexplicable and think up a way out. I often wondered how you survived it. Did your heart want to break with loneliness, bewilderment? What did you think on those first nights in that new place?
That first time Mommy and Daddy had to leave you there, you were so trusting, so innocent, a lamb about to enter, without any way to prepare for it, a strange new world. Mommy told me later how the man from Pennhurst came in and led you away by the hand and you, trusting as ever, went away with him and walked right out of daily family life as we had known it. And Mommy and Daddy, left behind, burst into tears in each other’s arms.
Years later, when in a totally different context they came to wheel Mommy down to the 24-hour care unit at Pennswood , Daddy watched again as she slowly disappeared down the corridors of another institution and was rolled the first part of her own “transition into eternity.” Now you’re where she is – wherever “there” is, if it is, too.
But you were also so funny! Right from the beginning you had a sense of humor. Later in life you could imitate people in the family or outside of it with the gift of a stand-up comedian. You’d even wait to laugh until everyone else had laughed, just like a good comic allowing himself a little laugh at the end of one part of a routine before launching into the next episode. Around the dinner table at Uncle Ross and Aunt Fran’s you turned Aunt Fran trying to teach her daughters the French “magnifique” into “fantastifique” and had us all on the floor laughing.
When you were going through adolescence and would have those occasional violent episodes, I’d try to take you out for long walks to get you tired out. Do you remember that once we came to the end of one such walk in front of a beautiful sunset? You called it, “the red sky and the blue sky.” Thereafter if I wanted to take you out I’d say, “Hey, Maffie, want to go out and see ‘the red sky and the blue sky?’”
You touched the lives of so many people. No one ever forgot the pure, sweet, and simple way you could give a hug. But you knew how to put the insufficiently respectful in their place as well. Once you were in the hospital with one of those frequent pneumonias you used to get from inhaling your food instead of chewing it! Once when we visited you there, a doctor came in to check on you. He was obviously uncomfortable checking a Down’s Syndrome person. You allowed yourself to be checked but ignored him completely at the same time. Your expression was, “OK, Doc, go ahead and check me out! We both know who’s the boss here!”
And how you loved to eat! Phoebe’s Garden Café’ is where we took you in Syracuse. “And remember, Just one pastry!! No seconds on Carrot Cake!!” And of course after the meal recounting that we had given you thirds on soup, thirds, on salad, thirds on chicken, thirds on pastry!! Of course all these extra helpings were little tiny bites that Mom or I would “sneak” you (“Shhhhhhh!! Don’t tell!!”) And you would echo putting your finger to your lips as well, “Shh!! Don’t tell.!” And how you would giggle when the successful “secret” operation had been completed!
And the records!! 24 hours a day those same records, until there were holes worn through them practically: Johnny Cash, the Supremes, the Jackson Five, Michael Jackson, the Beatles, and above all “The Union” songs from the Civil War arranged into a cantata.
With all that sitting around listening to records your weight got out of hand at times and then the staff at your home would try to get you to swim and exercise and keep the weight down. We were blessed that my beloved high school friend, Jamie Traver, became your personal doctor, one of the many people who adopted you, brought you home for holiday meals, and just basically treated you like family.
There were so many who worked with you over the years who did this: Vicki Sass, who became your second mother, Clarisse, your wonderful advocate; Linda Szatanek who a few years before you died took a hit from a boom box that you threw at her. Because of the injury you gave her she’ll never raise her right arm again above shoulder height. But do you know what she said about you, “I still love him the best. He’s still my baby!” That ‘s the kind of love you could inspire. There were many others I never really got to know who made a difference in your life in the group home where Mommy managed to place you after a long battle with the bureaucracy. That group home was a blessing, a stable refuge despite the budget cuts, where you could live out your life with dignity.
Now you’re with the angels. As Raquel would say, now you’re with Dr. King in heaven. I am so happy we got to see you… all of us, Daddy, Zaira and Raquel… one last time over Thanksgiving. I was thinking of you so strongly on Christmas Eve. Several times I almost picked up the phone to call you, but some trivial thing stopped me from calling.
Until the kind voice (Joan Chistiana) called me at 4 in the afternoon. At first I was so happy. I thought, “Isn’t that nice! They’re calling to say “Merry Christmas’!” Now I look out the window at a slate grey winter sky on the grey day after Christmas and miss you and tears come into my eyes and I know I can never hug you again and try to show you how much I loved you.
So I will try to put the love into music and into life and try still to be a worthy brother to you, remembering all you gave and all you were always, my beloved little brother, always there with me, part of me like my own heart beat, along the journey of our life.
To the group home staff who took such loving care of my brother:
January 1, 2006
Dear Friends,
Thank you all for being here. And thank you all from the bottom of our hearts for having “been there” for my beloved brother Matthew in so many ways emotional and practical over such a long period of time. For us you are all family.
All of us who have lived with Down’s Syndrome people know that what they give to us is more than we can ever give back to them. Although they are handicapped in so many ways, their eternal innocence, their capacity to show love is a continual example of what it means to be truly human. It is they who help to make us civilized, not the other way around. They teach us empathy, patience, and the great wisdom of small steps taken patiently over the slow arc of a lifetime.
I wish it were possible to thank all of you personally once again, to put my arms around each of you individually to express the eternal gratitude my father and I will always feel for all you did to make the last 24 years of my brother’s life such good and happy ones.
Having endured the horrors of a state with low taxes, we are also grateful to the State of New York for having provided a truly compassionate system that does indeed take care of the defenseless even at a time of shrinking public funds. There are no words to describe the agony of being forced to entrust your child, your brother, to a state system that is under-funded and therefore necessarily incapable of giving the kind of care that any civilized society should give to the less fortunate.
But our debt of gratitude goes way beyond the material. The gift of love, unquestioning, all-forgiving, all-generous love, such as all who have come today gave to my beautiful brother cannot be willed. You all serve nobly. You all do your duty even in the most difficult of cases. But what you have given to my brother is truly the greatest gift any human being can give to another; it is perhaps the only gift that human beings can give that matters at all measured against the infinite expanse of eternity. Truly everything else is “as sounding brass and a tinkling cymbal”…
Although this is a sad occasion, we must never forget that my brother was naturally one of the funniest people on the planet. All of us have enjoyed his talent as a mimic, his stand-up comic’s sense of timing, his impish joy at crossing the boundary of the forbidden (“DON”T TAKE OTHER KIDS’ PIZZA!!”). How many times did he have us all rolling on the floor with laugher!
And his music! Oh my God, didn’t he love those records and CD’s? In his hey day he could listen for hours. In fact, it seems that that is what he was doing when he stopped breathing last Christmas Eve.
It is practically certain that if I had never had Matthew as a brother I would never have become a musician at all. Certainly I would have been much less of a musician. From the day he entered my life, the first memory of anything I have at all, he touched my heart, caused me to feel things I would never have known, contributed more than any other person except my parents to anything that is good in me. So in a way in my musical career I have been his ambassador to the world.
For all of us Matthew’s passing leaves a great void. He was an unforgettable, an absolutely unique character. Although I saw him far too infrequently, he was always with me, and my love for him never wavered. He was a given in my life, like the sun coming up in the morning. Now that he has gone, there is that great emptiness where his hug used to be. But viewed another way, he will never leave us. His sweetness and grace will be with us forever reminding us of the better place that he came from and to which he has now returned.
Eliot