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Now! (from 11th grade)
If I were
asked to describe myself how would I describe myself? Would I
describe myself with the generic answer as being "in eleventh grade,
living in New York at home with my family and pet dog" or would I
describe myself differently than most? Am I really just an
eleventh-grader or is there more to me than that? I am more than
that and I have accomplished more than your average teenager.
This year I
started an organization for newly diagnosed children with SMA,
Spinal Muscular Atrophy. I started it in April of 2004. I started my
organization because Brenda, my caregiver/nurse, had made me too
many quilts. Brenda learned to quilt a few years ago and by April
she had made me more quilts than I needed.
Other than making blankets for my SMA buddies, I also enjoy making cards that I send out monthly. I send to about 100 kids/teens a month. I love hearing how a my little card/note makes a kid smile when they are having a bad day, and that is why I do it!
My Past...My Future
(Mostly written in 1998...Except when noted with a on either side)
When I was nine months old, my parents found out that I had Spinal Muscular Atrophy. That meant that I would never roll over, crawl, walk, stand, or even sit by myself. It also meant that I would get sick often, choke frequently, and have trouble eating. The doctors told my parents to take me home and love me since I would die before I was two. Were they ever wrong!
On January 3,
1989, my sister Emma Clare was born. We soon
found out that she had
Muscular Atrophy too. Emma and I
frequently got sick, but we still attended preschool. When I was
three, my mom was killed in a car accident
while on a lunch break from work. That was on June 4, 1991. My
dad took off work from A & S to take care of
us and so did a lot of my aunts and
uncles. In September of 1991 Brenda
came to live with us to take care of Emma and me. That was
wonderful. Right before Christmas of that year, I got a big
surprise...my first power
wheelchair! Finally I was able to go wherever I wanted. Yippee!
The sadness in my life didn't end that year, unfortunately. In March 1992, my sister Emma died during a nap. She had a hard time living because she was always in the hospital, and that made her sad. I believe that now she is 'free' to run, play, roll down the steps, and walk. Free like she never was during her life.
To help heal the pain of losing half of my family, we started to travel and visit my aunts and uncles. We went to Ohio, Colorado, Wyoming, and Florida in the next nine months. For some odd reason, after Emma's death, I became stronger and healthier for awhile. I continued to go to school and take long vacations, even making it to Iowa (Muscular Dystrophy Association Camp) twice.
I attended Elementary School for five years. During the second year, my breathing became weaker and I missed a lot of school. In third grade, my doctor wanted to put a hole in my throat to help me breathe...that's called a tracheotomy. He wanted me to use a special machine to push oxygen in my lungs (a ventilator), too. My father said no and so I didn't. What I did do was miss most of third grade because of pneumonia...it just wouldn't go away. With the help of a new doctor, though, I was healthy and ready to tackle fourth grade.
Fourth grade, and this time I missed a lot of school, not from pneumonia, but from having an operation to have my spine fused. The doctors told me that I needed to have the spinal fusion, but they warned us that I might die from the surgery. As you can tell, I didn't. I spent only five days in the hospital after a twelve hour surgery which amazed all my doctors, so much so that one is writing a paper about me. During the surgery, the doctor placed a metal rod that goes from my right hip up my spine to my neck and then back down my spine to my left hip. As a result of the surgery, I grew to my current height of 5' 4". After surgery I lost a lot of muscle strength in my arms from nerve damage and had to learn how to write and feed myself all over again. I also began having more problems with choking and I missed even more school.
so much school, I managed to graduate, to have a part in our class
play, and to sing a solo in "Romeo and Juliet".
Like many kids,
I collect Beanie Babies...all
types! I have over 300 beanies, and that's only since April, 1996.
Most of my beanies have come
from writing contests I have won on-line. I also received over 100
beanies after my spinal fusion! My dad got me hooked on Sasha dolls,
and so I've collect three of them, too. I attended my first Sasha
Doll Festival four summers ago. I love to design clothes for them
and then have my father make them. I also collect Noah's Arks,
angels, and of course Barbie dolls. As you can see, I am an active
person. I am rarely home in the summer time because I travel. During
the school year, I kept extra busy attending meetings of the two
groups I belong too. As a Girl
Scout, I was incredibly active, earning 40 badges in Brownies
and 70 as a Junior Scout (as of 2000). Can you imagine how many I've
collected by the time I finished the Scouts? I've also belonged to
WOW (Winners on
In middle school, there were many things I like and many things I dislike about it. I'll start with the bad things to get them out of the way. First and foremost is the issue of accessibility. This school, like many others, does not meet federal laws. There are no regulation size elevators, accessible bathrooms or drinking fountains; the doors aren't wide enough and they're not automatic; there are no safe parking spots and no handrails on the ramps...and that's just the beginning. These are all things that I would fix if I were in charge. I would also make adults take a disability awareness class, so that they would be more aware of the difficulties faced by people who are disabled.
Now, onto the
good parts. The teachers were wonderful and were quite aware of my
differences and how they do and don't affect my learning. I also had
many great friends. I have one especially good friend who I can
share secrets with, knowing that she won't tell anyone. I also have
other friends that I can hang out and have fun with and not worry
about being in a wheelchair. Luckily, I am not teased much. When it
does happen, one of the kids from my old school steps in and tells
the other kids why I am in a wheelchair.
One good thing about being disabled is that I don't have to wait in line when I'm at theme parks. And the best thing about being disabled is being able to change people's attitudes about disabilities one at a time. I figure that if I could do that I could make the world more equal for everyone.
(I have to "wing it" here, because going back, I didn't write everything down in my journal)
My 5th grade was a bit rocky to say the least. As I said earlier, accessiblbility was a MAJOR issue. I had go around the building twice daily until I got a serious case (not that every case isn't serious) of pneumonia. The school finally decided to move all my classes to one floor. Other than that, my 5th grade year went remarkably smooth. I enjoyed my teacherers and friends and even made it to a couple of school dances.
6th grade was extremely difficult for me health wise. My lung function began to decline rapidly. I was a "medical mystery" to my doctor and family. Below is a journal entry written by me describing my feelings:
Thursday, June 29, 2000 at 09:43 AM (CDT)
Hi Everyone MJ here! I received a note from Dr. Bach. I will going to see him on Sunday. Yes, I said Sunday! I'm going to his house! Can you imagine? Me, Margaret Jo Purk, going to Dr. Bach's house. We will be discussing my trach. Finally! I'm a little scared, but I know it is what I need.
After the meeting:
(written by my caregiver, Brenda)
Sun Jul 09 20:52:31 EST 2000
Well, we went to see Dr. Bach last Sunday...boy was it interesting. Seeing him in a casual setting was different. We went out to dinner with him and his son and also 3 other people. The restaurant was noisy so MJ couldn't hear what anyone else was saying unless we played telephone!! Nothing was decided except that Dr. Bach needs the tests results from the sleep studies they did! MJ was disappointed in that there was no answer yet, but is waiting. We spent 10 days at the lake house. MJ's cousin was there and they had a good time. They spent lots of time sewing for themselves and their dolls. Thursday, I took them to the movies (Rocky and Bullwinkle) with their dolls and they were wearing matching outfits. (When we get the pictures back, I will post them online!) We also got to see fireworks at the beach and MJ's friend came down Saturday to the beach with us. We didn't go to the beach everyday because it was too hard on me to drag MJ's beach chair through the sand, so we hung around the house! We got home today. This week we will get haircuts and take it easy. I think we are going up to Florida, NY to go to the movies with MJ's friend, Liz. Keep signing the guestbook. MJ sure loves to see your messages!
(written by me again)
Ultimately, I didn't get a trach but have suffered the consequences of under ventilation. 6th grade was a nightmare for me both physically and emotionally. I was emotionally estranged from both my family and friends. I was ready for that chapter of my life to be over.
Over the summer of 2000, I drove to Wyoming with my grandma and my caregiver, Brenda. My aunt turned 50 and it had become a tradition for the entire family to travel to the house of the 50 year old. It was a great party!!
Monday, October 02, 2000 at 08:39 PM (CDT)
Well, what a weekend we had!! We had a fun weekend in Vermont. We went to Ben and Jerry's and had a personal tour. MJ says it was like Willy Wonka's factory but Jerry was much nicer than Mr. Wonka!! MJ invited her friend Casey, and his family to join us and the two were the special guests for the day. We got a tour with Jerry (of Ben and Jerry's), got to go onto the floor while making ice cream (which they came in to do just for MJ and Casey), got fresh ice cream right off the line, and got tons of free gifts. Then we went to the Teddy Bear Factory and got a personal tour and MJ and Casey got a free bear of their own choosing. We ate Friday night with Casey's family at a restaurant, Cruisers. Saturday we ate at Aunt Chris's house, but didn't need lunch Saturday cuz of all the ice cream we ate!!! We ate breakfast before leaving Vermont yesterday with everyone again. Casey gave MJ two pumpkins he grew and they are wonderful!! We also stopped at the Yankee Candle Factory in Massachusetts on the way home. What a long weekend but very enjoyable!!
8th grade has been my favorite year for school so far. Despite my swallowing issues, which resulted in the temporary use of an NG tube, I enjoyed my year. I was thrilled to be the only kid my school to get a 100% on the state wide English test. At graduation, I was the only non Spanish speaking student to get a Spanish award.
Also in 8th grade (Brenda wrote this):
"Margaret won overall at the science fair, so on April 27th, she goes to the tri-county science fair. She did her project on Tolerex, the amino acid formula she drinks. Yesterday was the first day back to school full time, but during 6th period, her manual wheelchair broke. So, we drove over the bridge to get it fixed...luckily, they were able to fix it temporarily until the new part comes in. Margaret is also taking off from school the next three days while her class goes to Washington DC. She is going to stay at home, sleep, play on the computer (she got the new Sims Vacation game) and catch up on homework from being sick! That's all for now. Have a great week."
As you can see from my operations updates, 9th grade was extremely eventful. I missed a lot of school due to my surgeries and frequent illnesses. Besides my surgeries, I was hospitalized for a pneumonia. I bet that you want to read more about that, right? You're in luck!! I have that, just click my hospital journey!
Well that is me!!! I'm totally sure that more happened to me than I can remember. I'll leave you with some of my favorite quotes.
“I am not
confined to a wheelchair; I am mobilized by one. I am not
ventilator-dependent; I am a happy consumer of a lung-expanding
breathing device which allows me to continue doing the things I
love.” ~ The Honorable Justice Sam Filer, using a
computer-activated communication system
often and much, to win the respect of intelligent people and the
affection of children; to earn the appreciation of honest
critics and endure the betrayal of false friends; to appreciate
beauty, to find the best in others; to leave the world a bit
better, whether by a healthy child, a garden patch or a redeemed
social condition; to know even one life has breathed easier
because you lived, this is to have succeeded." ~Ralph Waldo
listen to other people's tendencies to be negative or
pessimistic because they take your most wonderful dreams and
wishes away from you -- the ones you have in your heart! Always
think of the power words have. Because everything you hear and
read will affect your actions! Therefore: ALWAYS be . . .
POSITIVE and above all: Be DEAF when people tell YOU that you
cannot fulfill your dreams!" ~ Unknown
"Humankind has not woven the web of life. We are but one thread within it. Whatever we do to the web, we do to ourselves. All things are bound together. All things connect." ~Chief Seattle
stumble through this life, help me to create more laughter than
tears. Never let me become so indifferent, that I will fail to
see the wonder in the eyes of a child. Never let me forget that
my total effort is to cheer people, make them forget, at least
momentarily, the unpleasantness in their lives. And in my final
moment, may I hear You whisper:
everyone with politeness, even those who are rude to you - not
because they are nice, but because you are. -Author Unknown
"Stick to your gun
if you believe in something no matter what, cause it's better to
be hated for who you are, than loved for who you're not." - Van
even if it is a sad smile,
isn't a destination, it's a journey.
argue with a stupid person.
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