Jacob Evan Yashinsky-Zavitz lived his life with enormous courage and humour, dealing every day with the intense hunger known as hyperphagia that accompanies Prader-Willi Syndrome. In creating a rich and meaningful life for himself, he also became a wise advocate for people living with PWS and people with disabilities.
Jacob died tragically as a result of injuries from a car accident at the age of 26. In his grief-journey, his father began to gather Jacob’s poems, speeches, letters, and his own record of his son’s sayings and doings – a whole book’s worth of “Jacobisms”. The resulting book I Am Full is Jacob’s story.
The excerpt from I Am Full below includes the text of a fundraising speech Jacob 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.
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 jeweller, 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,
Stomach grumbling,
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Knowing you’re out of date,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.
And worried,
Ashamed of your problems
Makes it hard to talk about things
Having no control over
Your temptations.
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 lunch boxes (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 hot dog in a sticky bun, Iouri’s European delights. This is how I became a multiculturally educated individual!
In middle school, lunch boxes 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 jewellery 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.