Melissa Phares-Chair Scholars Award Winner  laurel speaks at the FA Charity Dinner SA 2010

Young People with Ataxia Speak Up Contact Us to contribute.

On This Page:

This I Believe - Ashley Hartigan, May 2010
The Color of Life - Allie Kittel, October 2007
A Night's Adventure - Jane Kraemer
An Inconsiderate Crime - Aaron J. Smith, June 2007
Chelsea's Musings - Chelsea Chamberlain, May 2005
I'm Sorry I'm Not Perfect - Tyrel Pavelec, January 2005
Things Change - Doug Spooner, 1984 to 2004
Joy - Goeffrey Fox

Other Pages:

Brooke's Journey from Majority to Minority - Brooke Chelsey Ziegler, November 2011
The Upside of Disability - Phillip Bennett, August 2005
Adventures - Brianne Konanz





This I Believe Return to Top
by Ashley Hartigan, May 2010

I am faced with a gigantic challenge each and every day; that challenge is to walk. Because of this challenge, sometimes I use a wheelchair. Whenever I am in my wheelchair I am constantly judged as something I am not. My wheelchair is an accessory, like a purse, not the person carrying the purse, or me, who is sitting in the wheelchair.  When I go to the mall I get strange looks.  I believe that people who are in wheelchairs are the same as people who can walk.

On the outside it may appear that nothing is wrong, like I am just like you, but I am different. I have a health problem that compromises my nervous system; therefore my struggle to walk is not my choice. Sometimes I lie awake at night, in my bed, staring up at my palm tree wind-chime I got on my Make-A-Wish trip and wonder, Why me? What did I do to deserve this? Why can't people see me for me instead of the wheelchair? The answers to these questions bring tears to my eyes. I am terrified that someday I will be in a wheelchair permanently.

At night I have cried myself to sleep before, not because of a horrible day, but because everywhere I looked, I was silently judged. I try my best not to let stares or dirty looks ruin my day; however, sometimes I just can’t help it. I can have an amazing day, but by the time I go to bed I am hurt, sad, and mad that people can't see past the wheelchair and see me. My mom says that it's their loss, and that they are just insecure about themselves. Am I really that different?

When I get upset about the wheelchair my mom helps me to remember my true friends, who are able to look past the wheelchair and see me for who I truly am. Two of my best friends, Tara and Taylor, have been with me through all the changes, adjustments and struggles I have endured throughout the years.  In fourth and fifth grade especially, I remember talking on the phone with them every day.

My friends Anthony and Megan are a lot like Tara and Taylor. I have not known them since kindergarten, but they have been by my side since fifth grade. I am going through some of my toughest years, This year especially has been tough, because I know I will have to transition into a wheelchair for high school. If they are here for now they always will be. I know they will be by my side throughout my high school years, which makes me less nervous to leave Orangevale open and go to Bella Vista.

Another three people I can always count on are Donovan, Flannery, and Riley. I met Donovan and Flannery at a conference for my disease in November 2009 and we immediately clicked. Riley I met on May 2, 2010 at his Make-A-Wish Party. It is now May 7, but we are close now and always will be. They may not all live close to me, but we will be friends forever.

I am strong. This disease is not going to defeat me.  On the inside I am no different than people who can walk. I am patiently and impatiently awaiting the cure, that is soon to come.

The Color of Life Return to Top
by Allie Kittel, October 2007

Krog consists of everything usual, normal, and predictable.  The future is easily told because of the present.  All that is, will always be.  This state of being is unusual to us earthlings.  It may be hard to imagine now, but, at one time in our existence, we knew what this world was like.  Krog is practically the same as earth, in a physical sense.  There are buildings, forests, homes, lakes and, of course, people.  The whole world is filled with lifelessness.  Not really gloom, but definitely not joy. 

Everyone and thing lives in a world of black and white… metaphorically and literally.  Actually, it’s more a black world than white.  The reason there is no color, is the lack of light.  There is none.  No candles or lamps.  Although there is a moon, there was no sun to reflect of the moon’s surface.  It’s just a plain, colorless, emotionless, drab planet.  That way, things can be… predictable.  Nothing hurts, no one suffers, and no hardship that comes with change is experienced.

The ruler of Krog is known as Krognash.  He is the man in the moon that overlooks Krog.  He created this world and everything about it.  ‘This way,’ he thought,’ No one will experience pain or heartache.’  But very quickly Krognash realized the mistake that he had made.  Without pain, there could never be bliss.  A little too late to reverse his mistake, he decided to create another world.  He would call this one Earth.  He created Earth close to the moon that he dwelled on so that he would be able to watch both worlds.  And for this world, he created the sun and light, so the inhabitants could live in color and beauty, alive with excitement.  This was truly a beautiful creation, and Krognash couldn’t help but be proud.  He added gushing waterfalls, deep green seas, majestic mountains, and long stretching plains to acts as a drawing board for the animals and people. 

Oh, the people!  He knew he had forgotten something.  He wanted the krognites to experience love along with pain, and to also enjoy this creation of his.  He would take a couple at a time (there is no death on Krog) and start them on the journey to Earth.  They would enter earth as babies, that they might learn a little at a time and not be overwhelmed.  Although, it was inevitable the babies would be confused… Krog is extremely different from Earth.  This world is a little too much for firstborns so they keep their eyes closed often and sleep a lot.  It is too bright for them to see compared to a lightless world. 

Over time they get used to it and forget about Krog.  But they grow up. And they make mistakes, learn, grow, and create; a wonderful gift to have.

A Night's Adventure Return to Top
by Jane Kraemer

“The dumb alarm keeps going off! How many times do I have to listen to that infernal thing?!” I think right before I smack the snooze button. The clock’s long, glowing finger points at number eleven. I have five more minutes. Peering off across the blackness, I hunt for the unlocked door. “She’s not here yet. Good.” I roll to the side and clamp my eyes shut. “Five more minutes…”

In the unconscious realm, I find a young girl huddled beneath a bright light. She is diligently writing, but I can’t make out her words. I sit behind her in the dark, waiting to learn her story, to understand how she appeared in my dorm room. Then, I catch my eye on the postcards, perfectly taped to the shelf above her. The wheelchair bound girl fades away. A new, independent woman runs the streets of Paris, hunting for a corner to hide in. She flies past the police and into the shadows. I can hear her heart pound with excitement.

“It’s time to wake up…” The dream blurs from my vision. I feel Mai Allyn’s warmth as she rubs my hand with delicacy. What curiously dark eyes she has and a simple smile. Gently, she speaks, “Good morning, girly.” I stroke the goobers out of my eyes. “Morning already?” She nods and then wanders around under the covers, pulling out my legs and embracing my flimsy body into a sitting position. I am careful not to lose my balance, nor to capsize to the floor. We are ready for the transfer. Up, swing, and plop into the wheelchair—now, on to another day.

Eight years ago, I was diagnosed with a disease called Friedreich’s Ataxia (weird name—it doesn’t even sound like me), and I grew up with it, developing the symptoms with each day. While living at college, I hire students around campus to help me during mornings and evenings. The State of Michigan pays, and happily I have found enough friends to employ. However, during the day, I fight to reach books, to reach the light switch, and to transfer seats, especially between my power and manual wheelchairs. I knock on doors across the hall or holler to my suitemates. Neighbors will not abandon me even if they don’t feel up to the challenge.

This morning, like me, Mai is not entirely awake. She is a blunder! She dropped my toothbrush two times, grabbed mismatching socks, and handed me the deodorant instead of the water! “You’re fired!” I spat. She squealed. “I am not fired! You’re just a big toe!” What a dork! I mean really, a toe?! I laughed. She smiled, snatched the deodorant from me, coolly turned around, and gracefully returned with my water. I look up to Mai. We are connected not just by friendship. Her mother had Friedreich’s Ataxia, my disease. I have never met anybody with my disease; it is rare within itself. Maybe I am destined to have Mai as a sister. “Thank you, Mai. I had a lovely morning with you,” I proclaim in a sarcastic tone. “You’re welcome, gorgeous!” What sarcasm she uses! “Have a wonderful day, Jane!” She holds her arms out, expecting a hug. What the heck? I decide to give her one. Then, after a firm glance, I speed away.

The rest of the day passes with gloom. After lunch, my forehead begins to burn with fire. My palms leave moisture on all that I touch. Still, I roll into classes, copy as many notes as possible, and listen as the pain wraps snugly around my brain. Then, on the way back to my dormitory, I struggle through the snow. “What is the use of fighting?” I can barely keep my eyes open. Soon, my power wheelchair swerves into a snow bank. “Oh no! I’m stuck!” Tears spill from their dwelling.

An Inconsiderate Crime Return to Top
by Aaron J. Smith, June 18, 2007

Law enforcement should have a stricter penalty for illegally parking in a handicapped parking spot because this offense causes anyone who legitimately needs the spot to make an impossible trek from a main parking lot. It is a selfish act. One should think about who is affected by committing this violation. It is a shame when someone ambulatory is so inconsiderate. Society should be more aware the consequences of this act.

I was twelve years old February of 1999; it was then that my life changed forever. I was diagnosed with Friedreich’s Ataxia, a neuro-muscular disorder, which progressively deteriorates muscle and nerve functions. At the time of the diagnosis I did not fully realize the challenges I would have to overcome in the near-future. Now twenty years old, I have witnessed, first-hand, the selfishness of society. One everyday challenge I face is one that I should not.

I attend South Louisiana Community College and driving into the parking lot every morning is much like a game of chance. Will I have a parking spot in the six spaces designated for those with disabilities? Or instead, will I be forced to park in the rear of the building, where my strength will not be enough to propel myself over a four foot hill that the rear sidewalk is built on? I would also have to cross a road, a road with speeding traffic.

I did, in fact, lose this “game” a number of times. Every incident shared a common trait; all of the handicapped spaces were occupied by more than three vehicles without either a handicapped license plate or hanging placard.  On more than one occasion, I have been the last to take advantage of the reserved spaces and I have noticed people in adjacent handicapped spots waiting for friends or family to get out of their class. Rather than wait for these people in or on the side of the main parking lot, these people illegally take a handicapped persons parking space. In order to spare their friends or family an additional twenty or thirty feet of walking, these criminals opt to make it impossibly difficult for those with disabilities to make classes at all, much less on time.

Handicapped parking is not some sort of consolation prize awarded to those with disabilities, it is a necessary right. Since a $500 fine is not enough to deter an inconsiderate criminal, there needs to be a far harsher penalty.

Chelsea's Musings Return to Top
by Chelsea Chamberlain, May 2005

A few Christmas’ ago, I think it was Christmas of 2002; I was finishing my first semester at college.  Much to my parent’s irritation and concern, I was not yet using a wheelchair.  I did use it, however, for outings that would require a lot of walking… if only to minimize the time of walking like a ‘drunk.’  Anyway, a week or so before Christmas, my best friend asked me to join her and her family to Zoo Lights.  The Phoenix zoo dresses up the whole park in Christmas lights.  It is just a fun opportunity for friends and family to spend a nice winter night together and enjoy some hot chocolate and the cold… if you can actually call Arizona winters ‘cold.’  Jessica –my best friend-, her brother, a friend of his and myself were having a great time.  We were running around, well I was rolling as this was one of the few times that I was using my wheelchair, and laughing and having a fun night.  Jessica and I are always laughing about one thing or another; our laughing got us into some trouble during jr. high and high school. We were taking a break from looking around and decided that we wanted to share a pretzel and a coke.  She pushed me up towards the concession line.  We were making fun of her brother, or something like that… whatever it was that we were laughing about, was quite amusing to us.  We were waiting in line laughing when this little old woman came up to us.  It is hard to judge height when you are sitting down, but she could not have been more than 5’4.  She walked right up to me and pinched my cheek – no seriously, I have never seen this woman in my life – and says to me: “It’s so nice to see you people smiling.”  And I looked up at her, knowing perfectly who ‘you people’ were and asked: “Well, why wouldn’t I be?”

Seriously, why wouldn’t I be smiling?  I had and still have no reason not to.  I am alive, I have friends, I have family, I have freedom, I have an education, I have the ability to be anything I want, I am not hungry, I have clothes on my back, I have food in my stomach, and I always have a chair.  You know not many people can say that.  I never have to worry about finding a chair whether it be at a party, club, movie, or anywhere… I always have a chair.  Granted being in a wheelchair sucks on many levels. My parents probably hate that I just used the work ‘sucks’… they hate that word, I think it is a generation thing.  Sometimes things do just suck and being in a wheelchair is one of them.  There is no denying it, there is no way to sugar coat it.  It is not really the wheelchair so much as it is the reason why I am in one.  Having a neuro-muscular disease is hard.  The future is much more scary, daily life is that much harder, and remembering the past  - the days when I could do certain things – is hardest.  But a person cannot live in the past, and they certainly cannot live in the future.  The only place a person has to live is right now, today.  I have many things to cry about.  The fact that I have a terminal disease kind of puts a damper on things.  But I cry about other things.  I cry about getting a bad grade.  I cry when I fight with my friends.  I cry when I have boy problems.  I cry at sad movies and happy ones.  I cry at the really corny Hallmark commercials.  I have a lot of things to be afraid of.  I am afraid of snakes.  I am afraid of hospitals.  I am afraid of bees… ok, in my defense I cannot run away from them.  I am afraid when my friends push me in my wheelchair and they have been drinking.  And I am afraid of tomorrow.  But tomorrow is going to come whether I like it or not.  And being in a wheelchair makes all of this a bit more difficult, but it is nothing that I cannot handle.  None of us are given more than we can carry.

When I asked that old lady why wouldn’t I be smiling?  That made her so happy.  She bent down and kissed me right on the cheek.  As sweet as that was, it was highly disturbing.  Jessica and I have now added that into our book of memories.  It was a good night.  I have had many good nights in the two years since that has happened.  Now I am 21 and using a wheelchair full time now.  I have had to break boundaries with my wheelchair.  I have had to break my comfort zone many a time.  I have to do it each and every day.  Do I like it? No.  If I could change it, would I?  Hell yes.  But it doesn’t matter if I like it, and I can’t change it, so I have two choices.  Closet myself away so that I do not have to feel pain and people do not have to see me in my wheelchair, or take the pain and live my life.  I choose the pain.  Sometimes it really wares me down and I fear defeat is coming.  But I am like Rocky, just when you think I am down, I come up swinging.  I take the pain, because along with that I get comfort, love, joy, and laughter.  I have so many wonderful memories that if I were to leave this world tomorrow, I would have no regrets.  I laughed, I loved, I believed, I cried, I yelled, I got in trouble – still do actually – I have lived the life of any other 21yr old with a few alterations.  I am grateful for each day I have been given.  I refuse to guesstimate how many days I have left, because really, that just takes the fun out of life.

I'm Sorry I'm Not Perfect Return to Top
by Tyrell Pavelec, January 16, 2004

Stand up straight people yell
I want to tell them to go to hell
There are days that I run into you in the hall
I try and stay close to the wall

But sometimes I can’t help but fall
These floors are not the softest and can even make me ball

Live a day in my shoes
You’ll be accused of drinking booze
So many of you have been blessed with talent it could ooze
And it really makes me mad to see you take a chance and lose
I’ve been chosen because you probably couldn’t handle it
It’s a whole bunch of nonsense and bullshit.

We’re all going to die someday
So I’ll eat hay
I’ll make things out of clay
And lay by the bay
I just may
What do you say?

Actually, I’m going to be a part of finding a cure
And when I do die, my heart will be pure.

People that make fun of me may not fair so well
Because they are going to go to hell

Getting Friedreich’s Ataxia is a 1 in 50,000 chance
I’ll just hang out and watch you dance

Unfortunately, I was a chosen one
The world will be a better place after I am done

It’s not always easy to stay positive
Finding a cure will help me to live

I hate it when
Fat people make fun of me – and they can lose weight
I’m stuck with this crap forever

Saying HI to me in the hall
Doesn’t cost you anything at all
It makes me feel so happy that I want to ball
So always say HI to all
Or pick up the phone and give me a call

Things Change Return to Top
by Doug Spooner, October 4, 1984 to December 13, 2004

It seems like just the other day I was running around the baseball diamond for little league.  But time passes and things change.  They have changed for me more than most of my peers.  I now use a wheel chair.  I no longer have dreams of playing professional sports.  However, I still think of myself as a normal teenager, if there is such a thing.

My disease keeps me from doing certain things with my friends, but they are reasonable and find ways to include me.  I go to movies with them, even though they may whine about loading my chair into their cars.  We play games and joke around with each other.  They don’t feel sorry for me; they shouldn’t.

My family and I now have to plan where we go more carefully.  We need to make sure that the places are accessible.  We even had to remodel part of our house recently, so that I can learn to be more independent.    I’m not sure what I want to study in college, but I am somewhat interested in marketing.  It’s not football, but it works for me now.

My disease is called Friedreich’s Ataxia.  It affects the nervous system and gets worse over time.  I prefer not to think of it as a disease, just more as a change in my lifestyle.  To tell the truth, I usually prefer not to think of it at all.  I try to not let it change the things I do and the ways I think.  It does limit the things I am able to do, though.  I am, for the most part, a normal kid.  There is nothing I can do to get rid of my disability, and I don’t plan to let it get me down.

Joy Return to Top
by Geoffrey Fox

We
One
Mine
She's
When
She
She
Showing
We
And
Where
I
Her
Her
I
I
She
Bad
I
I
My
She
I
My
all have heroes
we wish we could be
is my sister
a hero to me
she is scared
doesn't run and hide
stands up for what she believes
nothing but pride
share the same genes
suffer the same fate
she learned to love
learned to hate
courage is uncanny
fight is unreal
want to be like her
want to feel
has managed to turn
into good
am trying to be like her
know that I could
hero is my sister
is the real McCoy
love her to death
hero named Joy


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