Contributed by Dan Yashinsky
Our son Jacob, at age six-and-a-half, said to me once: “Could you get me paper? I’m going to write about superheroes.” Jacob Evan Yashinsky-Zavitz was, himself, as close to a superhero as I’ll ever know. He lived with PWS, and as all the readers of PWSA | USA's Pulse newsletter know, that takes more courage on a “normal” day than most of us can ever imagine. Despite the many challenges he faced, Jacob never lost his extraordinary sense of humor, his kindness and generosity, and his understanding for others who, like him, lived with an often-daunting disability.
He died at the age of twenty-six from injuries suffered in a car accident. The journey of grieving him led me to reflect on how much he gave to us and to the wider community through his presence, his (mostly) buoyant philosophy of life, his poems and speeches about living with PWS, and his large and loving heart. That’s when and why I started to gather the stories that wound up in a book. Jacob’s older brother Natty suggested that people beyond our own community would find them useful, and that’s how I Am Full – Stories for Jacob was born.
Stories are a way for someone’s spirit to stay alive, and through this book, I hope he keeps inspiring people to believe a life lived with Prader-Willi syndrome can be rich, meaningful, and full of love. I hope it gives all the people who read it a strong sense of Jacob living, not Jacob lost. I hope it can be a model for being a “story keeper” for a loved one who leaves our world far too soon. “A person is not dead unless he has been forgotten,” goes the West African proverb. This book is a small way to keep his voice, his laugh, his wisdom, and his joy in life alive.
ABOUT "I AM FULL - STORIES FOR JACOB"
The book is a mix of things Jacob himself wrote, and things I narrate in his imaginary voice. Being a writer and storyteller by trade, I have always kept a journal. This became a major source of the memories, anecdotes, and experiences that wound up in I Am Full. The publisher, Signature Editions (based in Winnipeg, Manitoba), has a list full of interesting, experimental, prize-winning work, and I was thrilled when they told me they wanted to publish my book. I wrote the book in Jacob’s imagined voice, and it also includes many things he wrote himself: speeches, letters, poems, riddles. The excerpt below includes the text of a fundraising speech he gave in Guelph, Ontario, two months before his death. He got a standing ovation for it, and brought the sold-out audience to laughter and to tears. You can find a video of this speech by clicking HERE.
Hello Everyone! Before I begin, I would like to thank Ryan, Kelly, and anyone else who helped organize this event for inviting me to talk about my personal experience with a disability. I would also like to thank everyone for coming out and supporting this cause!
My name is Jacob Zavitz. I am twenty-six years young (I say years young, because I too like to flatter myself and ignore how old I really am!). I am an unadulterated adult who has never committed adultery. I am also a poet, photographer, a jeweler, and I work for Toronto Police Services as a crossing guard!
I have come to this event today to talk about my first-hand experience living as an individual with a disability. I was diagnosed when I was four years old. My parents didn’t understand much about what I had at the time and didn’t try to explain to me what I was going through or why my life was noticeably different from others’ until I reached the age of eight years old.
By the time I was twelve, I had attended many conferences and on occasion heard the doctors speak about my disability. They used a lot of medical terms which I didn’t understand, and found boring. This is what I heard:
Symptoms of Prader-Willi Syndrome are and not limited to blah blah blah Hyperphagia blah blah blah. Prader-Willi Syndrome is caused by blah blah blah lack of or multiple chromosome WTF’s blah blah blah.
I would now like to take this opportunity to explain in the simplest words and in the form of a poem by twelve-year-old Jacob Zavitz about his perception of what Prader Blah Blah Blah Syndrome is:
Stumbling Through Hunger
Stumbling through hunger,
Looking for food,
Walking through hallways
Due to a feeling
That you need to eat,
Led off your feet,
To start your seek,
Fuel gauge busted,
Your memory rusted,
Not remembering what you ate,
Knowing you’re out of date,
With your unknown weight,
Nervous about a lot of things.
Ashamed of your problems
Makes it hard to talk about things
Having no control over
You cannot stop.
It cannot end.
When I was in Elementary School, grades 1-6, I ate the food my parents packed for me and ate the food other parents packed for their kids. The lunch boxes were in bins outside of the classroom. With very little supervision available for kids with disabilities at the time (mid-2000’s), I would select an item from various lunchboxes (to avoid suspicion), therefore providing for myself another lunch to eat. My favorite lunch items were: Hong Guen’s Korean red bean and walnut cakes, Brien Diep’s Chinese hotdog in a sticky bun, Iouri’s European delights. This is how I became a multiculturally educated individual!
In Middle School, lunchboxes and bins were extinct, so I decided to pay other students to deliver pizza to me, and I would store it all in my locker, and take several (*cough*cough*) washroom breaks.
The hardest challenges of my life started when I attended George Brown College for a goldsmithing education. I learned forms of goldsmithing, hand fabrication, and model-making out of wax. However, I did not have any support from anyone for the first three years, and bought extra food every day, gained lots of weight, and carried my life’s stresses on my broad fat shoulders. I was happy to have been accepted into college, and have the opportunity to learn something cool, and was proud of myself for it. However, having an eating disorder and being constantly hungry, and not having support, I had to eventually swallow my pride and ask for help. My family hired a support worker, and despite our differences at times, having support helped me feel more comfortable in the last two years of my semi-independent college life.
I am now an adult. My challenges haven’t really changed day to day from when I was younger. However, my quality of life has become greater because of my ability to cope with or find solutions to reduce my day to day challenges by making better decisions. I still have an eating disorder. I still have hyperphagia, and I still break into the forbidden fridge at home on occasion. You may be wondering after what I just finished saying, how could my quality of life have improved if such challenges re-occur?
Well, as an adult I have learned to embrace my disability rather than ignore it.
I have learned to ask for help rather than to become sicker from my secrets.
I have learned that, although I have a disability, I am able to do many things and succeed at them.
I am not Prader-Willi syndrome but have Prader-Willi syndrome. Living with a disability doesn’t define who I am, because I am who defines who I am.
I am a crossing-guard for Toronto Police Services.
I am a jewelry designer.
I am a photographer.
I am a fisherman.
I have Prader-Willi syndrome.
I AM Jacob Zavitz!
(And at this line everyone starts clapping and I see people crying and I see my dad and Luisa smiling so proudly and I look at the crowd and feel so much joy that I improvise something that wasn’t in the speech. I pretend to read my script and I say: “’Break for applause’ was actually built into the script …” And then there is a great roar of laughter and I’ve never heard such laughing at something I’ve said, and I understand how important it is to the people in front of me who are parents and grandparents of people with disabilities to hear someone like me being so funny.)
I will start to close my keynote by offering a few pieces of advice and mentioning a couple of other things.
Don’t think about what doctors say your child can’t or is unable to do. Instead, wait and be patient and you will discover what your child is capable of doing.
Lock your fridge and pantry early in your child’s life, so as they grow up it will feel normal.
If you plan to go out to a restaurant as a family, look at the menu at home with your child and agree ahead of time on what they will order.
Compliment your child whenever you feel they have done something they should be proud of.
The last couple of things I would like to mention are:
I have donated a pearl necklace to the auction. For those interested, you should bid on it, because adrenaline is good for you. For those of you with questions, come on over to my jewelry table, and I will answer any of your questions with the purchase of any jewelry item. For those who do not have questions, come to my table anyway and purchase a piece of jewelry. It will help me buy my next fishing rod, camera body, lens, or help pay my Visa bill.
(And they all stand up and clap and I am crying a little bit from all of this love and Luisa is there with a hug and we go to my table and by the end of the night I sell $1,000 worth of necklaces and earrings.)