I Am Full - A Read-Aloud Requiem for Jacob Evan Yashinsky-Zavitz
A Story From Our Community - written by Dan Yashinsky
I wrote a book about our son Jacob as part of grieving his death in 2018. The book, titled I Am Full – a read-aloud requiem for Jacob Evan Yashinsky-Zavitz – is being published next winter by a Canadian publisher called Signature Editions. The dedication says: For everyone living with Prader-Willi Syndrome, and all the people who love them. I hope it helps spread the word about PWS, and about the loving and meaningful lives that are possible for people who have this condition. The book is written in the first person, as if Jacob himself was telling his many stories directly. It also features many of his own writings – poems, essays, letters, and speeches. Below is the text of a speech he gave in Guelph a few weeks before his untimely death.
Excerpt from the book:
I am in Guelph with my dad and Luisa to give a keynote speech at a fundraiser for Prader-Willi Syndrome research. It is May, 2018. Luisa helps me set up my jewelry display. The idea is I give the speech and then sell lots of jewelry. Good business marketing technique! Luisa also cooks delicious food and teaches me to cook, and to ALWAYS smell the spices and herbs before putting them in. I even cooked chicken parmesan for Wynee and me. And she gives good shoulder rubs whenever I ask her. She and my dad put the earrings on my birdcage display, which is hard to do unless you have good fine motor skills. Ryan Kelly introduces me and cries a little because he says I am his inspiration. He and his wife have two daughters, one with Prader-Willi Syndrome and the other with Down Syndrome. I’m glad they will hear this speech, which I worked hard on. It is for them, and all of my friends with all of their syndromes, and everyone in the world who is different. Luisa and my dad are sitting right in front of me, just behind a buffet table I plan to explore after my speech. I step up to the podium and begin.
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 Hyper Phagia 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 grade 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 favourite 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 jeweler 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.
Below is a photograph of a painting of Jacob by Toronto artist Gabi Caruso that was painted in honour of and to remember Jacob. Bernard Kelly took the photograph of the painting. The middle picture is a photo of Jacob and our close friend, the late musician Oliver Schroer. The last picture is of Jacob doing one of the things he loved best...fishing.