3/16/2018

Forty Years in Fifteen Days

I often say my life is full of ironies based on having Cerebral Palsy, for example I love antique cars, I can't get a driver's license. I love to write poetry but my handwriting is awful...... I

Day 1


It's a responsibility of mine to promote Cerebral Palsy Awareness during the Month of March. Those who know me know for years I ignored questions about having CP. I still cringe when people come up and say "Oh you have MS" or "Are you ret****" No I have Cerebral Palsy or I prefer "CP". BOTTOM LINE: My brain is going 100 MPH while my body goes about 5MPH. I will] turn 40 on March 15. For the next 14 days, I will post a fact about my life, and how CP has affected it. I WON'T POST anything else. I DON'T expect people to "Like" or "Share" what I have to say, BUT PLEASE READ IT. Consider it a 40th birthday present...........Day 1
Day 2


CP has been portrayed in movies, such as "My Left Foot" (1989) based on the life of poet Christ Brown (play by Daniel Day-Lewis), "Door-to-Door" (2002 based on the life of Watkins Company salesman Bill Porter (played by William H. Macy), Breaking Bad Walter,Jr. (played by RJ Mittes who has CP) and recently TV's Speechless, which the main character J.J. (played by Micah Fowler) really does a great job portraying a teen's life with CP because MICAH HAS CP HIMSELF. Ironically in the latest episode JJ turns 18 and gets a tattoo. NO TATTOOS IN MY FUTURE.......12 days
P.S. YES I originally said I wouldn't post anything else, I mean written or repost anything besides CP related material. However storm pictures are EXEMPTED from the rule

Day 3 Wasn't really a status update but I uploaded a graphic from the UCP website. Hey I wasn't sure if I could write fifteen separate status updates'!! So I cheated I used a meme!!! So sue me!





Day 4-CP has been portrayed in movies, such as "My Left Foot" (1989) based on the life of poet Christ Brown (play by Daniel Day-Lewis), "Door-to-Door" (2002 based on the life of Watkins Company salesman Bill Porter (played by William H. Macy), Breaking Bad Walter,Jr. (played by RJ Mittes who has CP) and recently TV's Speechless, which the main character J.J. (played by Micah Fowler) really does a great job portraying a teen's life with CP because MICAH HAS CP HIMSELF. Ironically in the latest episode JJ turns 18 and gets a tattoo. NO TATTOOS IN MY FUTURE.

Day 5-Alright I talk about my folks helping me a lot, but my grandma, Theresa Princiotto, was always there too. We'd go over there for dinner every Sunday She took me to therapy while my mom worked. During every one of my surgeries, the day I got out of the hospital she had me at her house so my folks could get some sleep. We had great times in Florida and Lake George. She had early on-set Alzheimer's Disease that started around 70, but she hung on for over ten years and passed away in 2008. Happy Birthday in Heaven Grandma I love you ....10 days!

Day 6- Was skipped because of the massive storm in Cape May


Day 7- Day seven means I should talk about a big one speech. Moving my mouth requires the greatest control and makes my body the tightest. It is by far the most frustrating aspect of living with CP,. So it makes perfect sense I love to talk! To make matters worse I have a great vocabulary. Despite this I have done some public speaking, I've spoken in front of Senators, Doctoral students, even little kids. I gave the best man speech at Chris Mattes's wedding.............. 

Day 8-First off Happy 30th Birthday to my cousin Charles Princiotto, born 9 years and 357 days after me.  I actually have three family members in this countdown, you should know the third will make an appearance in five days. Related to CP. well it's really two sides of the same coin. On the one hand they have helped me, sometimes more than they should. On the other hand I think I might have helped them in some ways too. Like all families together we've gotten through a lot. I'm lucky to have them!~

Day 9-  I decided when I was getting stuck I'd revert back to the basics. Here we go, EATING. I'm great with a folk, knife and spoon not so much. Makes it really interesting when I'm out to dinner without family. Ok I got to admit my first prom I nervously explained to a teacher I didn't want to have my date cut my food in front of the entire table. She asked the wait staff to do it in the kitchen. There are a few other tricks up my sleeve but you know I have 6 days left



Day 10- is dedicated to therapy, Physical, Occupational and Speech I went from the time I was six months old well into my 20's. Twice a week up to five times a week when I had surgeries. They kept me moving all these years. They also saw me through some challenging times with school. Fun fact they also helped raise my brothers, while I was getting "tortured" they played with them when they were babies. In fact in a way they helped raise ALL OF US. Seeing the same people every week for 20+ years doesn't make them friends.........it makes them family! Now I have a trainer Tyler Cotterell down here. My only regret is I wish I met him sooner

Day 11- Well I'm going to cheat! Last night was the PERFECT send off to my 30's, I was with my dad, Uncle Sal , brothers Chris Mattes & Pete and a combined crew of North and South Jersey friends. Definitely some amazing peopleI am lucky guy


Day 12- Alright I talked a lot about talking and\ walking, what about just standing? The first time I stood up completely unassisted, I was around five and it was October because I planted a pumpkin in our garden in our back yard. Every day my dad carried me out there and sat me down or leaned me up against the post to watch it grow. He loves gardening and it was HIS way to pass something HE loved onto his oldest son. That day he happened to have a camera. For what ever reason without thinking he just stood me up against a fence post and turned to get his camera, he was a professional.. I called him back, he turned around and I was no longer leaning on the fence I WAS STANDING. He snapped the picture scooped me up and ran back inside to tell my mother. She didn't believe him, the next day he developed the picture.



Day 13--HAPPY 35th BIRTHDAY to my youngest brother Peter (Petey) Yes I was turning 5 years old when my mother gave me a second brother. We had joint family parties and I always hated waiting two days to become older, now I don't mind. Petey has grown up= to be a smart caring and all around good guy. Wait I must still be asleep! We celebrated many memorable moments together. He also married Sue Mattes a wonderful caring woman who keeps him in line, well most of 
the time Love you brother!!!!


Day 14--Alright I wanted to cover writing, ah typing. I can write but every other body function goes down hill when I hold a pen. Actually I was five when I came home from preschool sobbing because I couldn't draw a sun. I knew how, I tried. Well That Christmas there was a big box for me under my grandparent's tree............an APPLE IIC COMPUTER, complete with drawing software/ That was a giant step forward for me



ALTERNATE VERSION OF LAST DAY Day 15.. I was born March 15,1978 in Ridgewood,NJ.. My dad, Peter, was born in Germany, mom, Mary born in Queens and both my brothers born in NYC. My mom actually went into labor on March 14th which, even though isn't uncommon I always thought was interesting. Now I know better to get into the details, but I wills say I have THREE LIVES. You see I was resuscitated TWICE and whisked off by ambulance to Columbia Presbyterian Hospital two days later. Admittedly birthdays for me are a double edge sword. On the one hand it's a reminder of what happened forty years ago. I often said it's llike a life sentence for a crime someone else committed. On the other I consider myself lucky to live this life for forty years. Do I get angry? You bet. Do I have self-pity? More than I ever admit. B
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