Stay tuned!

Dear readers,

I will be taking a hiatus from TAOA for a little while. I definately plan on continuing the blog though my posting will become less frequent, but at least once a week. I hope you have enjoyed yourselves here at TAOA and that you will continue to check in and see what I'm up to. I will continue to chronicle my quest for a service dog, along with the comings and goings of life. Interesting things can be found in the mundane, you just have to stop for a moment and look. Thanks for listening and stay tuned for more!


Let's talk winter safety

When the winter season comes along complete with snow and ice, everyone's safety is at risk. And if you're not willing to uproot yourself to a place where winter is almost nonexistent, and therefore a non-issue, then listen in for some safety tips!

Usually when people think winter safety, they consider traffic crashes and winter sports accidents. Instead, let's consider another everyday interaction with winter weather: walking. Simply getting from point A to point B and remaining upright can be a challenge. When I walk around in a winter wonderland, it is not a matter of if, but when I will fall.

The inevitability of falling at least once in a winter wonderland leads me to the importance of prevention. There are products on the market that are made to promote the smooth sailing through ice and snow on foot.

Shoe stabilizers can be slipped onto the bottom of yur shoes or boots to give you better traction in the snow. They are similar to cleats in their purpose and are often made of rubber for a tight fit and easy removal.

While the benefit of shoe stabilizers is more universal, my favorite winter mobility tool is the ice tip. To put it simply, it is a rubber crutch tip with the added bonus of a tiny ice pick on the bottom. How awesome is that?! The crutch tips are designed so that the metal component can be inverted for transition from outdoor to indoor use.

I anyone is interested I found a quirky list of "winter slip and fall safety tips" which provide obvious do's and don'ts as well as a play-by-play of how one might fall and what to do when one is falling. Enjoy the ride, courtesy of University of Tennessee, Iowa State University, and University of Alaska Fairbanks (very collegiate work there, guys).

Campus accessibility: the grass is always greener

As a college student who has cerebral palsy and uses crutches to get around campus, accessibility is very important to me. It affects my everyday life as I go to class, the dining hall, the library, and my dorm. I wrote an article for my school newspaper at The Saint Rose Chronicle about accessibility.

As a student journalist, I found it interesting and frustrating that I had to keep my perspective out of the story. I could not interject my voice or my opinion about the accessibility of a campus I have become familiar with over the past three and a half years. I had to separate myself because journalists are to act as conduits for information without bias.

So I gathered my sources two of which work in the office for students with disabilities one is a current student and the other graduated in 1993. What they had to say was interesting and perplexing to me because I didn't necessarily agree with them. The outlook of my disabled peers on campus accessibility was much more positive than my own perspective was at the time. When I was conducting the interview I thought to myself are we talking about the same campus?

Whenever an elevator or a button to open a door was not working, I would utter a popular phrase on campus, the St. Rose difference. Using the college's old slogan in a negative light which is perhaps why they have since changed their slogan.

Earlier in the semester when I was writing the article I was also thinking of transferring to Siena college hoping to find a different atmosphere (difference in what way, I do not know). I just wanted a change. So I took a tour of the place and made a very ironic discovery. The office for students with disabilities was in the oldest building on campus, the only one without an elevator! I had to go around to the back of the building to get to the bottom floor where the office was located.  The staff also had no knowledge of e-text, which is an integral part of how I read my textbooks and therefore how I function as a student.

Siena College was my dose of perspective. Everything about it was comparable or worse than St. Rose. Accessibility being one of those things that were worse. Visiting another college reminded me that even while campus accessibility may not always be ideal and certainly has some glitches, at least it's not stuck in the Stone Age without elevators or e-text in vital places.

An undeserving revelation

The other night I was lying awake trying to figure out why I have stopped and started the service dog application process so many times. People ask me if I really want the dog, sighting my procrastination as an indication that perhaps I do not. I do truly want to get a service dog. I do believe that having a service dog would enrich my life in many ways. Being partnered with a service dog will make me more independent and give me a greater sense of self-confidence.

My revelation came in the form of this thought: I do not deserve a service dog. But now I must ask myself why?

For some reason I feel like my physical restrictions are not as severe as that of other people seeking service dogs. But at the same time, I must remind myself that although demand is greater than supply, I am not preventing someone who needs a service dog from getting one just because I am pursuing the same goal.

I must relinquish the idea that I do not deserve a service dog if I am to be successful in completing the application process. I hope I can do that, but it is more than a hope, it is a must. It's time for a paradigm shift towards success.

From green light to red light

In a previous post, I mentioned my goals for the upcoming break that would lead me to greater independence. However, one of my major goals has been crossed off my list and not by my own choosing (thus the major strike through of one entire paragraph in my previous post).

I planned on taking my road test in the next few weeks. My driving instructor recently promised me that winter break would be the best time to take the test and that I would be ready. Today she recanted her statement so in all likelihood, I will not be taking my road test. And as usual, the timeline in my head is considerably shorter than reality.

This is the second time that she has made such a promise and broke it. I'm really angry and disappointed! Getting my license means so much to me and my independence. I was so excited that after spending 15 months taking lessons, I would finally reach my goal. Now my timeline is postponed further. I wish she had not gotten my hopes up!

Cerebral palsy on the big screen

Inside I'm Dancing, also advertised under the title Rory O'Shea Was Here, released in 2004 is a story about the friendship between Michael, who has CP and Rory who has Duchenne muscular dystrophy. Michael and Rory both live in a residential home for the disabled. Their unique friendship allows them to communicate despite the fact that Michael has nearly unintelligible speech.

My Left foot released in 1989, is a film based on the life of Christy Brown. He has severe cerebral palsy, with his speech being limited to gutteral sounds. For the first ten years of his life, people believed that he was retarded. Through mastering control over his left foot (the only part of his body he had true control over), Christy is able to realize his true potential as a painter, poet, and author.

Gaby: A True Story is a film that was released in 1987 about the life of Gabriela Brimmer, severely affected by cerebral palsy, and only able to control one of her feet which she used to type on a typewriter. Gabriela attended the National Autonomous University of Mexico and later became a poet, painter and activist for the rights of the disabled.

To try

In less than a week, the fall semester will be over. I am excited to take a hiatus from academic life. One month free from papers, textbooks, and Chaucer!

I am hoping that this free time will allow me to make considerable strides towards independence.

After a few more lessons, I plan on taking my road test to get my license. I almost expect to fail the first time, out of nerves. Second time's the charm? I know I'll get there and reach that goal. I've had to be very patient because often the timeline in reality is very different than the timeline I have set for myself in my head.

I also plan on making a dent in my service dog applications. My major hurdle is the essays in which I explain why I need the service dog, my lifestyle, and ultimately this is where I ask for help. Therein lies the difficulty; asking for help. For me, asking for help like this emphasizes the fact that I have cerebral palsy. Something which I do not always wish to acknowledge, especially when having a disability makes me appear weak or needy in some way.

I hate that!

But I will suck it up and write the essays required for the applications. I must remind myself that these essays do not need to be of Pulitzer prize-winning quality. Most of all, I just need to write them and do so from the heart, without prejudging and over analyzing every word I put on the page.

I suppose it is most fitting that the word essay means to try. So, over this break, I will try. Sometimes that's all one can do is try. But with any hope, I will also succeed!

Path to acceptance

Any loss can be grieved.
Grief is not confined to death as society believes it to be.
Grief is a process triggered by loss or absence.
The five stages of grief are not fixed, but fluid.
With grief one can be in two places at once.
One can regress toward the beginning.
Or move toward the end.
Let grief run its course and it will result in acceptance.

Author's note: the five stages of grief as presented by Elisabeth Kubler-Ross: denial, anger, bargaining, depression, and acceptance. I have reached acceptance when it comes to having cerebral palsy. I will admit that I have regressed into moments of depression and anger but I live the majority of my life with acceptance. I live as a victor and not as a victim. This is my body, this is my life.

Trying to be a one-woman orchestra

I have a passion for music, but that doesn't mean I'm very good at it, unlike my passion for writing. I am an amateur when it comes to music, but I love music so that doesn't bother me. My musical endeavors started as the pursuit of fun and continue on that way. Even though I love to play my clarinet and try out other instruments such as viola, piano, and voice, there are certain things that get in the way of honing my skills.

The first time I played clarinet, my fingers ached with pain. Having CP means that my fine motor skills are lacking to a certain degree. I started playing clarinet when I was 20, though I had begged and pleaded with my parents to let me play clarinet at the age of 12. My parents and the music teacher agreed that it would be too difficult. I love the sound and the feel of the keys. Though, after playing it for a year and a half, I still have difficulty keeping my fingers where they need to be, covering the correct keys and holes to produce the right note. It's so frustrating! There is no real way I can see adapting to that particular problem.

Reading music is another matter entirely. I can hardly be called literate. When I look at a sheet of music the notes on the ledger lines run together. When I'm playing a piece of music, I cannot differentiate between a quarter note and a whole note when it's on the same line. So, I label my music with the note names, A through G.

Then I started associating certain notes with color. However, teaching myself to do so was limited in its effectiveness at first, as the association between notes and color is not always consistent or automatic for me. The correlation between notes and color is often associated with perfect pitch, a gift which I do not have, though at first I thought it could be possible.

Some people who have perfect pitch have something called sound color synesthesia. People who have this type of synesthesia associate certain sounds, whether it is music or everyday sounds, with color that is most typically seen in the mind's eye. I had once hoped that I too had sound color synethesia, but I am not gifted in that way. When listening to music, particularly a live performance, I have seen color in my mind's eye; however my experience is probably due to my creative imagination more than anything else.

Though I will continue playing the clarinet and hope to take piano and voice lessons, my several attempts at trying to learn how to play the viola have not been successful. I even modified how I played the instrument by playing it like the cello.  The dexterity required within such a small space on the neck of the instrument is far too tedious for me.

Even if I continued with the viola, I know that I would never attain the skill level that I hold now with the clarinet (a skill level which is still amateur). Today I will be returning my viola to Francis Morris Violins, Inc. feeling a bit defeated. As much as I love making music, I cannot learn every instrument that I find beautiful and inspiring.

I hope to God that I have better luck learning to play piano!

Age 15 or 30

My actual age is 21, but most of the time I feel like I am 15 or 30. Part of me feels ready to move light years ahead of my 21-year-old self. Move forward in life to a new chapter and start to feel like I am truly living life to the fullest. I have been told that living life to the fullest has a lot to do with your state of mind and does not necessarily have any correlation to age.

I have always gravitated towards adults since childhood, feeling more accepted and able to relate to them as opposed to my peers. That fact has a great deal to do with my having cerebral palsy. From childhood I have felt older than my age. Yet, as I start to face real responsibility, I doubt my ability to fulfill such responsibility and reach my goals in life.

Sometimes I feel like I am regressing to my 15-year-old self because I am not as independent as I would like or need to be. This fact bothers me to no end! I know that independence is the key to becoming the person I want to be. I still rely on my parents too much, though it is painful to admit.

I rely on my mother in particular for emotional support. My mother is my best friend, however, I have been told that my Gilmore girls-like bond with her is not the most healthy for an independent life. Can you say inferiority complex? I don't truly hold adult status in the eyes of my parents, especially my father. Complete independence is the only way they will consider me an adult. This is the only way for my opinion to truly be considered and respected.

If only it were easy to bridge the gap between 15 and 30.

Cerebral palsy health minute

There are various ways to treat cerebral palsy, aside from surgery. Here are some of the treatment methods available today:

Botulinum toxin, otherewise known as Botox can be used to lessen the spastisity in the muscles of those with CP.

The Today Show featured a story about robotic therapy used to treat and provide better physical outcomes to children with CP.

Constraint Induced Movement Therapy is a new technique being used to help people with CP and other neurological issues such as stroke, gain strength in their limbs.

Stem Cell Therapy is being used in some patients with CP whom have preserved chord blood from birth.

I hate grocery stores!

It is not the inconvenience of small-town charm that I fear. For example, when I want to get in and out quickly but someone with whom I have a tenuous connection shows up and I am forced to make small talk.  like when you want to get in and out quickly, but instead you run into someone you know whose connections to you is not quite tenuous enough for you to just not acknowledge them. 

Though these exchanges are awkward, that is not why I hate grocery storesIt seems that Every time I go into a grocery store, I automatically have a 50% chance of falling. Those chances increase when the weather is bad and the floors are wet due to rain or snow.  Really, I don't stand a chance.  A discarded receipt, or a rogue coupon will quite literally be my downfall.

There have been books written, even an anthology of sorts, of receipts, grocery lists, and other discarded slips of paper.  The theory is that you can gain a small window into someone else's world by what they write on their grocery list.  But really, I'm not that interested in getting to know you when your discarded grocery list has caused me to be at eye level with the floor. Cleanup in aisle three!

One man's transformation through dance

I read an article yesterday in The New York Times by Neil Genzlinger which was published November 24, 2009. The article is about Gregg Mozgala, a 31-year-old with cerebral palsy who is overcoming his limitations through dance. 

The performance he has been working on for about a year with his choreographer, Tamar Rogoff will soon be on the stage as an hour-long piece.  Mozgala originally envisioned his performance would last about 10 minutes. However, given the benefits and improvements this training has afforded his body, an hour-long performance is more suitable given what he has achieved

The performance is entitled "Diagnosis of a Faun" and will premier on December 3, 2009 at La MaMa Annex in the East Village of New York City.  Mozgala is an actor with the theater group Theater Breaking Through Barriers. Despite going through years of physical therapy, Mozgala has not seen nearly as much improvement as he has through his work with Tamar Rogoff, " I have felt things that I felt were completely closed off  to me for the last 30 years," Mozgala stated in an interview with The New York Times.

The progress made by Mozgala supports and gives some hope to the theory of neuroplasticity, which means that there is potential for positive change within the body for those who have neurological disorders. Previously, neurological disorders like CP were believed to be fixed and unchangeable.

I personally find Greg's story to be inspirational. His success challenges my ideas about the reach of my own physical capacity.  I, like Mozgala, have found little success in physical therapy.  As a kid I was involved in many types of physical therapy; stretching, swimming, horseback riding, and even ballet.  My initial excitement for these activities would quickly wane as they often involved a great deal of discomfort, and even pain. 

I never liked participating in physical therapy because it kept me away from my friends and other things I'd rather be doing, but most of all because it reminded me of my cerebral palsy in a way that made it too real.  I could not just sweep it under the rug when doing these activities. I was reminded all too often that I would never have the physical capabilities of my peers.

If as an adult, I'm able to take away the stigma I attributed to physical therapy as a child (and sometimes still do) then maybe I could try something that while physically beneficial, would not fall under the category of physical therapy and therefore the stigma would be gone.

Anyone want to try yoga?

Handicapped parking fraud

I have seen many people parked in handicapped spots who don't have a right to be there. Sometimes I just let it slide because I see it so often; I figure its not worth getting angry over. But other times it irks me.

I stumbled across the website which promotes strict crackdowns on handicapped parking violations and allows for reports of fraudulent abuse of handicapped parking spots.

To park or not to park, a thought which goes through people's minds when considering whether to park illegally in a handicapped spot, suaging their guilt by telling themselves they will only be a few minutes.

Fines for illegally parking in handicapped spots in the city of Calgary, Canada are going to be increased drastically from $150 to between $300 and $500, as a deterrent.

In Albany County, New York a crackdown was conducted this past weekend, with the event of Black Friday promising that shopping malls would be overcrowded. Due to the mayhem, people will do anything including park illegally in a handicapped spot to ensure they get the deals their looking for. Since 1994, this annual effort has resulted in $217,470 worth of fines.

Victory for Ian Pearl

I wanted to follow-up on a story that I referenced in a previous post about Ian Pearl, as belated as this may be. Ian, who has muscular dystrophy, was set to have his life sustaining coverage ended this Tuesday, December 1, 2009, if it weren't for those who rallied behind him to fight his insurance company, Guardian.

On October 14, The Washington Times broke the story about Guardian's plan to deny coverage to Pearl. In his defence, Ian posted a blog on the Huffington Post entitled "I Am Not a Dog" on October19. Three days later, Guardian issued a press release acknowledging that it would be a mistake to deny Pearl and others coverage. Ian's mother, Susan, wrote a letter to the editor of The Washington Times, thanking journalist William Ehart for writing the story about her son.

The national attention garnered by the article has led to the drafting of a bill by the New York State legislature which may become known as "Ian's Law." Such a law would ensure that members who have high insurance claims cannot be denied coverage.

I want a segway!

A segway is a "self-balancing personal transportation device." Traditionally segways have two wheels, and are upright, but some come with four wheels which allows the person to sit instead of stand. The average segway weighs 120 pounds and runs costs anywhere from 5,000 to 7,000 dollars. Its top speed is 12.5 mph. The segway has made cameo appearances in pop culture, including use on MythBusters by Adam Savage. The segway also appeared in the movie Paul Blart: Mall Cop.

I would love to take a spin on a segway, just to try it out. The idea of it is very appealing, but not always practical. I like the idea of going down a sidewalk and not having to worry so much about tripping, but in crowded urban environments such as New York City, I imagine that the convenience of a segway would decrease dramatically. It would probably be easy to run over a few people in the street, on the way to work!

Still, I find myself wanting a segway. It would be nice to be able to tool around and not have to worry about the terrain of my environment or the condition of my joints. Call me lazy, but a segway would just be a different way of adapting to the challenges of my environment.

Live your dreams!

There are many talented people with CP and other disabilities who have alot to offer the world with their talents. Here are just a few examples.

I discovered Esté Yarmosh's guest post on the Blog Feminists With Disabilities (FWD)/Forward. She points out that even though it's good to be able to laugh at yourself, pop culture isn't allways tasteful in its portrayal of those with disabilities. She's living her dream in her pursuit of an MA in English at Simmons College after completing her Bachelors at Eastern Connecticut State University.

Daniel Corliss is indeed a remarkable person. In high school, he switched his mode of transportation from a walker to a wheel chair. However, after being hit by a car while in his wheel chair, he decided that he would walk again and began using his walker that he had not touched in 20 years. He is living his dream in pursuit of participating in the Little Rock marathon.

Frank Abate followed his dream to become a special ed teacher as well as baseball coach and yesterday he ran the Philadelphia Half-Marathon.

Shawn Murinko acknowledges that it is a balancing act to escape pity yet gain understanding from the outside world. Shawn followed his dream and has a law degree.

Carly Okyle, has several posts on the blog Your Tango. Of particular interest to me was her post on "Diary of a Disabled Woman Seeking Love," in which she describes the difficulty of dating.

Chris Ridgway appears in an article about a disabilities awareness program at West Chester University. He has followed his dreams to success as he is a two time Paralympian in wheelchair racing.

My live blog!

2:59 p.m. ~ A voice-over in J.D.'s voice expresses that it is best not to forget the kid inside of you and in the same closing scene, Dr. Kelso is seen driving out of the parking lot with the arms of the gorilla suit still on.

2:58 p.m. ~ J.D. lays some hard truth on his brother about how he's afraid to fail.

2:55 p.m. ~ Elliot is trying to mend the rift between J.D. and his brother but is not successful.

2:53 p.m. ~ Turk goes to the funeral of one of his patients that died on the operating table and forgets that patient's name in front of the widow, as a result he gets thrown out of the funeral.

2:50 p.m. ~ As punishment, Dan farts in the car with the windows locked and J.D. has to suffer the smell.

2:44 p.m. ~ Elliot is going out the lunch with J.D. and his brother to J.D.'s dismay. J.D. makes efforts to tell stories about how much a looser his brother is because he is embarrassed by him.

2:43 p.m. ~ J.D. and the janitor continue their daily feuds. The janitor is one of my favorite and more subtly humerous characters with more of the funniest single lines than most of the other characters.

2:41 p.m. ~ Its Halloween at the hospital and someone is walking around in a gorilla suit.

2:39 p.m. ~ "Stop your stupid laughing, it makes you look like a whore!" J.D. says to Elliot after imagining the sexual between his brother Dan and his on and off again girlfriend Elliot.

2:33 p.m. ~ J.D.'s older brother, Dan, shows up at the hospital to visit, gradually wreaking havoc on his life with his co-workers and friends.

2:31 p.m. ~ Turk and J.D. are shopping for a shower curtain, an employee at the store calls JD "Sir" which throws him into a crisis about his age.

2:30 p.m. ~ Now on to episode two, My Big Brother.

2:28 p.m. ~ The moral of this episode is accepting that people see you in less than a flattering light.

2:26 p.m. ~ Elliot embraces her new role as the hospital tramp, giving advice about sexual positions.

2:24 p.m. ~ Poor Ted gets in the way of Dr. Kelso's rage over Dr. Cox putting a patient in a clinical trial.

2:22 p.m. ~ Random nurse, Noel, asks Eliot where the G-Spot is because of her new reputation as a slut.

2:16 p.m. ~ J.D. messes up and causes a patient to lose his sense of smell.

2:15 p.m. ~ Ted the lawyer makes another timid attempt to give legal advice to Dr. Cox.

2:14 p.m. ~ J.D. feels left out of the boys club that is surgery.

2:12 p.m. ~ Word quickly gets around the hospital about her fling.

2:11 p.m. ~ Elliot has a one night stand with a new doctor, and asks him for exactly what she wants which is "Shirt on, lights off, no talking."

2:07 p.m. ~ Dream sequence one: J.D. meets a hot woman in a bar. Goes to kiss her, and a male opera singer pulls the wig off, revealing that she's a man singing "mistake."

2:03 p.m. ~ J.D. is wearing a new white Doctor's coat, and he feels spiffy!  Elliot says "do me, do me, do me! In the middle of a bar.

2:01 p.m. ~ Meet the cast of Scrubs

2:00 p.m. ~ For the next hour, I will be live blogging two episodes of Scrubs entitled My New Coat and My Big Brother. Scrubs is a sitcom about a group of neurotic health professionals told mainly from the perspective Dr. John Dorian and his goofy daydreams.

I will be live blogging Scrubs

I will be live blogging the sitcom Scrubs from 2:00 to 3:00 p.m. Eastern Standard Time,  on Saturday, November 21, 2009. Feel free to tune in to Comedy Central and comment as I post. It will be fun!

Five hour pre-licensing course

I am one step closer to getting my license, having completed the five hour pre-licensing course mandated by New York State on Tuesday, November 10, 2009 from 4 to 9 PM.

I signed in and the secretary instructed me to follow the signs across the carport and into the classroom. Once across the carport, I had two choices. The doors in front of me read "beware of dog," and "five hour course."

I walked into the classroom and I was hit by an odd smell. My first thought was welcome to hell, five hours of it anyway.  There was only one other person in the room, but by the time the class was up and running, I had 14 other people with which to commiserate.

Upon closer inspection, I realized that our classroom was not really a classroom, but a poorly converted garage with no heat.  The five hour was held in a very sketchy part of the city and I was convinced that some harm would befall me if my friend was not on time to pick me up.  It is ingrained in me not to be anywhere alone at night. Not only do I feel vulnerable from the standpoint of my own physical weaknesses, but recent security alerts from campus security were on my mind.

Then we met our instructor, Bill.  Hey Bill! Bill reminds me of a stereotypical gym teacher. The only thing missing was a whistle at the end of a lanyard around his neck.  He had facial features which led me to a tenuous connection of his resemblance to Alton Brown, host of Good Eats on the food network except Bill was older and his humor very corny, kind of like a corny uncle.

I thought that I would be surrounded by 16-year-olds ready to take their driver's test the very next day, but I was wrong. They were all 18 years or older, some were from foreign countries. No one had a name that I could pronounce.

Three hours, then I was done with it. I started to zone out. I wanted nothing more to do with watching more videos about driving, circa 1982.  The oldest video was of inmates from Germany willing to drive in excess of 50 mph into a tree to demonstrate the life-saving power of their seatbelt. Really, who else would do that? By that point, I was running on only water and a 90-calorie Special K bar. I spent my last two hours there watching the clock and wondering if my friend wanted me to be another statistic.

Asexual mess I am not

Looking back on one of my old posts entitled strictly platonic, I wonder if people look at me and other people with disabilities as if we were asexual. Such assumptions are not true. A small percentage of people show complete disinterest in sex, and therefore could be considered asexual.

It is amazing what people can manage to surmise just by looking at another person, never having talked to them, or without knowing who they are. Some conclusions may be accurate but most of the time they are not. I have been wanting want to dispel such false conclusions as they can easily be made without my knowledge. And who really can correct a first impression anyway? Not every person that gathers a first impression of you will take the time to get to know you and prove or disprove their initial hypothesis.

I don't know why people think of the disabled as being asexual or sterile. I've been asked some strange questions regarding my sexuality and ability to reproduce. Such These questions have led to some of the more baffling and awkward moments of my life. Being pat on the head like a dog, and told "good girl" when a teacher's aide in high school asked if I was capable of having children and I responded with a confused "yes?!"

I mean really, why does this question pop into people's heads and go so far as to be considered appropriate to ask? I want to go up to random people and ask them "are you fertile?" and record their reactions in some way. How would you feel if someone asked you that, in an out of the blue context? At least kids only ask "what's wrong with you?" and don't take it further than that. I never thought I would consider a curious young child to be more polite than their adult counterpart.

The good side of humanity

Here are some feel good stories about people reaching out to help individuals with cerebral palsy.

Haley Christmas, a 27 year-old with cerebral palsy from Charlotte, North Carolina enjoys waving at cars from her golf cart. The golf cart was stolen, but the community pulled together to make sure that she would be able to continue smiling at passers-by.

James Rose, 24 who has cerebral palsy and Darren Brown, both of the United Kingdom, decided to go skydiving and raise money for charity while doing it. Brown, whose daughter has CP, raised money for Scope, an organization who advocates for the equal rights of people with CP in the UK. Rose raised money for the organization from which he obtained his service dog, Canine Partners and Comic Relief.

Blake, a five year old boy from Australia, gave the gift money he got received at his birthday party to Lucy Hibbert, a three year old with cerebral palsy in need of a power wheel chair.

The employees at a hairdressers in the UK chose one of their customers to be the recipient of their charity drive, eight year old Jake Hawkins. Jake has cerebral palsy and needs a specialized bike.

In New Delhi, India, 64 people participated in a 3.5 kilometer wheel chair race for charity.

I'm Back

I'm back here at The Art of Adaptation, having enjoyed my time over at Reese in Pieces which gave me the opportunity to write about writing, one of my life's passions the major passions of my life. Thank you to Abby for bringing a sports perspective to my blog. It was enlightening, and I learned a thing or two about sports for the disabled that I did not know before. I'll have to check out that movie, Murderball.

That's All For Now Folks [By Abby]

First off, thank you for hanging in there with me over the past week. A special thanks to Heather for allowing me to be a guest on her blog! I had a great time and I learned a lot about Cerebral Palsy, the life of people with CP and how sports and CP or other disabilities can be successfully combined.

You can now find me back at my blog Run Over Albany.

As Robert Frost said and a quote that I live by, "The woods are lovely, dark and deep, but I have promises to keep and miles to go before I sleep, and miles to go before I sleep."

This Made Me Cry [By Abby]

I watched this video twice and it made me cry both times.

Truly inspirational.

CPISRA- Cerebral Palsy International Sports and Recreation Association [By Abby]

Photo courtesy of: CPISRA

Photo courtesy of: CPISRA

CPISRA is the Cerebral Palsy International Sports and Recreation Association who's vision is a world where people who have cerebral palsy or a related neurological condition have the opportunity to participate in the sport and recreational activity of their choice. 

The sports that the CPISRA govern are Football 7-a-side (like soccer), Boccia, and Race Runner. Most of the sports I've been reading about over this past week are pretty self explanatory. My focus in Run Over Albany, my blog, is mainly on running. Because of that I've been looking mostly into running with CP or how running helps and affects the lives of people with CP. 

But after looking over the CPISRA website and numerous other websites one of the sports that was continuously seen is Boccia. I was initially intrigued because I have never heard of this before.

According to United Cerebral Palsy Boccia is a competitive game that can be played one-on-one, in pairs, or with teams of three.

It is played on a specially marked court, usually with a hard surface.

Photo courtesy of: UCP

The goal of the game is for players/teams to throw/bowl game balls so that they get them as close as possible to a special target ball. The game begins with a player throwing the white target ball onto the court. Opponents then take turns trying to throw/bowl their game balls as close as possible to the target ball. When the game balls have all been thrown, a referee determines the points awarded to individual or teams based on measurement of how near the game balls are to the target ball.

The use of chutes and ramps allows many individuals to participate who might otherwise be unable to compete.

Photo courtesy of: CPISRA

A player may use an assistant when using a ramp. The assistant is not allowed to view the playing court and must follow specific instructions from the player at all times.

Boccia is such an amazing sport because it can be enjoyed by people of all ages and by one to a large number of people. Boccia can be competitive or for recreation.

Most importantly Boccia can be played and enjoyed by people with a wide variety of disabilities.

Run With The Cheetahs Disadvantage Or Not? [By Abby]

Oscar Pistorius aka Blade Runner
Photo courtesy of FlyingTeachers

Oscar Pistorius was born in 1986 in Johannesburg, Africa, with congenital absence of the fibula in both legs. When he was 11 months old both of his legs were amputated between his knees and ankles because of this. Pistorius quickly learned to walk on prosthetic legs (the ones he uses now are called cheetahs) and in his early years became a very avid athlete in school.

He played rugby, water polo and tennis and in addition to all three sports he took part in Olympic club wrestling. In January 2004 he suffered a very serious rugby injury and was introduced to running.

He hasn't looked back since that day.

He began competing in the 100-400m sprints in the Paralympics. Most of the time winning and breaking world records Pistorius became known as the Blade Runner and "the fastest man with no legs."

One of Pistorius's biggest dreams was to represent Africa and qualify for the (able-bodied) Olympics.

In January 2008 and independent study stated that the use of his prosthetic's gave him an unfair advantage over runners with two whole legs, thus violating an International Amateur Athletics Federation rule that prohibits the use of technical aids.

Just recently on November 6th, 2009 a study found that prosthetic legs do not grant any advantage in sprinting.


Photo courtesy of IMBD

There are not many movies that show a good representation or a representation at all of people living with disabilities who are also playing sports. Among the few is Murderball.

Murderball is a film about paraplegics who are playing full-contact rugby. This movies shows the unimaginable obstacles they faced to compete in the Paralympics. The Paralympics are an international competition for physically disabled athletes.

 Photo courtesy of Paralympic Sport NYC

There are 24 sports in which the physically disabled can compete in. Some of the sports are split up by physical disability group. Traumatic brain injury, CP and stroke are all grouped together. The sports that this group can play are Archery, Boccia, Cycling, Equestrian, Fencing, Power Lifting, Rowing, Sailing, Shooting, Soccer, Swimming, Table Tennis and Track and Field.

Running Around Town: A Quick Link Roundup [By Abby]

Andy Sullman
Photo Courtesy of Media dis&dat

On my blog I do a weekly link round up on running and things that are going on around town. My hope for this week as a guest blogger is to first off learn more about Cerebral Palsy and second find a way to combine my love of running with Heather's life and challenges of having CP.

In doing some research I found this story about Andy Sullman an 18-year-old who lives with CP and who ran the Chevron Houston Marathon.

Running has helped him to overcome some of the symptoms of CP. He did in fact finish the marathon and he did it in a faster time than he had hoped.

There was also the story of Mike LaForgia who just completed the NYC Marathon as discussed in this previous post.

I began to wonder how common this is and I found some other stories of instances of this. Apparently running is often times easier to accomplish than walking for children and adults with CP.

Here We Go! [By Abby]

Here we are, as Heather so graciously introduced me in her prior post I am Abby and run my blog Run Over Albany. I am a fellow classmate of Heather's and am very excited about the opportunity to guest blog for the next week.

The excitement is mixed with a high dose of nervousness as my blog focuses on Running and Heather's is few and far between. I embrace this opportunity and hope I can do Heather and this blog justice. I look forward to spending the next week with you all! And again here we go!

That's all for now

This week I'm going to have a guest blogger here at The art of Adaptation. Her name is Abby and in an ironic juxtaposition, she is an athlete who runs track. Abby runs a blog entitled Run Over Albany and while she is guest blogging here, I'll be over at Reese in Pieces discussing life as a writer. See you in a week!

If it ain't baroque, don't fix it

I found ten dollars in my winter coat yesterday and I used it to buy a blue betta fish. His name is Bach, as in Johann Sebastian Bach. I named my fish after the composer as I've been on a baroque music kick lately. Even my ring tone is a snippet from Bach's little fugue in G minor. Now, if I could only find my keys. No matter how long it takes me to find them, they will be in the last place I look. They certainly weren't in the first place I looked, which was on the end of the lanyard around my neck!

I often spend my Sundays doing homework and getting groceries from the local Hannaford market. But this Sunday I will be at the local arts show helping a family friend who is a potter. I was his apprentice this summer. Though I enjoy throwing and seeing how my pottery turns out, if I had the chance to go back to school again, I don't think I would go back for that particular art form, but for a degree in music performance.  I'd like to go to Juilliard in New York City. I've only been to the city three times and I  find it to be very intimidating, but also very invigorating. In reality, I've got to stick with my English degree as I am not a very talented musician. It will probably take me another year and a half to finish school (five years in all which is only one less than the number of piercings I have in my ears).

My sister and I

My mother has always warned me not to compare myself to my sister.  My sister and I are quite often polar opposites in terms of personality, interests and abilities.

She is majoring in business management and I am an English major. She goes to school in Delaware, five hours away. I go to school in upstate New York, thirty-five minutes from my house. She has an athletic scholarship and mine is an academic scholarship. She is an extrovert and I am at times painfully introverted.

We were not best friends growing up, and certainly had our share of sibling rivalry. We are only a year and a half apart in age and we've gotten closer in the past couple of years. I guess not living together all of the time keeps us from getting in each other's hair.

Brianna recently said to me "I don't just love you, I like you. I have to love you, but I don't have to like you." Despite our differences, I miss her very much especially when she is so far away.

I like you too, Brie.

With eyes looking downward

I just can't help but look down at the ground before me. The consequences for not doing so are falling as I did today, walking down the sidewalk. Headed to the drugstore to by yet another ankle brace so that I don't have to choose which ankle hurts more and deserves bracing each morning. I found a few interesting things along with a lot of garbage discarded on the sidewalk, within the space of two blocks.

There are leaves everywhere and they are the most hazardous and the most abundant thing I find on the ground these days. More interesting to me would be the pink slip entitled "While you were out" which is a little form indicating a desire to communicate with someone and the manner in which you request contact. I wonder whose missing a white and blue sock, are you?

Idols through the years of my life

When I was five years old I wanted to be The Little Mermaid, perhaps in a subconscious effort to renounce cerebral palsy and exchange my dysfunctional legs for a mermaid's tail.

In my junior year of high school my English teacher nurtured my love for writing and literature. She was my confidant as I did not have friends or trust my peers. I wanted to get a PhD just like her.

Laura was like a second mother to me, she struck me as a strong woman, independent, free spirited and hard working. She was so kind and always thought of other people. I loved the condo she live in. I thought to myself when I grow up, I want to be like Laura from her kindness to her condominium.  In 2006 she was diagnosed with ovarian cancer, stage four.

I want to be a talented poet like Sylvia Plath without committing suicide at age 30. I wish to say goodbye to depression before that age too.

Sloane Crosley is an essayist who writes with what I would consider enviable wit and humor. If I can learn to tell a story as well as she does than I will be able to sell a book. Which means, I will at least be able to pay my electric bill.

I accept the fact that I am already like my mother. So many children try to avoid being like their parents, but I am already there so why not embrace it? It's not so bad. I love her, she is my best friend.

Advice on advisement

Academic advisement day is one week from today. There are many priorities on academic advisement day, the first of which is to seek counsel from one's academic advisor exploring options, counting credits and making a plan for the 2010 spring semester. In full disclosure, I myself have not yet signed up for my advisement day meeting.

Timing is key to this day, so don't be late! (especially to the meeting with your academic advisor). They only last twenty minutes at best, so don't procrastinate on planning out what you want your schedule to look like. Have a plan A, B, and C. As the times preassigned by the Registrar's office can be a cruel mistress.

Instead of using a weekday free from classes to study or spend time with friends, I will be taking the five hour pre-licensing course mandated by New York State. I suppose I'm not really escaping the class atmosphere with a five hour lecture on the agenda. Five hours, forty-five dollars and one slip of paper later and I will finally be allowed to schedule my road test.

My juggling act

Taken literally, the title seems quite absurd to me, as I cannot juggle due to poor hand-eye coordination. The juggling that I am referring to is quite common among college students and most people at large.

My dad has always told me that hate is a strong word, and he's right. I don't hate college, though I throughly dislike it at times and certainly have the capacity to get stressed out to the Nth degree. Stress continues to plague me as midterm papers and presentations linger on over the course of three weeks!

As a result of my learning disability, it is just plain fact that it takes me longer to get my work done. I also have to rely on other people for help when my technology falters or stress consumes me.

I hate this, but it is true.

I just want to be done with undergrad and move on to grad school. Right now I feel like I'm in high school, and that part, I hate! But, facts are facts and it may take me five or six years to finish my Bachelors. So, for now I'm left dreaming of MFA and MSW degrees.

Taking life and running with it: a round-up

A Life Without Limits race was held Halloween day sponsored by United Cerebral Palsy of Northwest Alabama.

Michael LaForgia of Smithtown ran the New York City marathon on prosthetics made by A Step Ahead. In 2005 Michael became ill with bacterial meningitis but he doesn't let that stop him from running a marathon!

Nicholas Dronsfield of Victoria, Canada got his chance to carry the Olympic torch despite being initially thwarted by protestors. Though his primary mode of mobility is a wheelchair, he was determined to walk while carrying the torch!

The art of parallel parking: a poem

The art of parallel parking

Parallel parking is an art,
Not a science.
Unlike everything else,
I can't do it exceptionally well.
Attempting it certainly feels like hell.

My poor depth perception does not serve me well.
More than two feet from the curb,
As the other cars swerve,
To avoid hitting me.
I see a fender bender
In my future.
The art,
That is to parallel park,
Is no calling of mine.

By Heather D.

Inspiration for this poem was drawn from the frustration that is parallel parking, as well as two stanzas of Sylvia Plath's poem "Lady Lazarus."  The two stanzas appear below:

Is an art, like everything else,
I do it exceptionally well.

I do it so it feels like hell.
I do it so it feels real.
I guess you could say I've a call.

Four people and fifteen links

Mark E. Smith is a 38 year-old with cerebral palsy. He is the author of several books and founding editor of  On his website he maintains a blog entitled PowerchairDiaries. He is also manager of Pride Mobility Products, a wheelchair manufacturer. Thank you to Debbie for informing me of Mark's blog and his incredible story.

Ian Pearl, a Huffington Post blogger with Muscular Dystrophy has made the headlines recently in his fight against his health insurance company, Guardian. But it is not just a fight with his insurance company, it is a fight for his life! I am rooting for you, Ian! (A full post on this coming soon.)

Nancy Mairs has written several books and essays, the majority of which are devoted to what life is like with Multiple Sclerosis.

Shiloh Pepin, more famously known as "mermaid girl" was born with Sirenomelia or mermaid syndrome. Sadly, she died Friday, October 23rd at the age of 10 do to complications from pneumonia. May you rest in peace, Shiloh.

Run, Forrest, run!

I want my own "Run, Forrest, run" moment.

Sometimes I wish I could just purposely throw my crutches to the ground and then go into a full out run! No crutches, just my shoes hitting the pavement while I continue on, upright at full speed as the wind pulls my hair away from my face.  I daydream of this freedom every once in a while.
Sometimes I wish I could just run like as my sister does as an athlete on her college soccer team (with her very own scholarship). Or even just be able to run long distances as I see people jogging all the time. My mode of running of course is best when done on an elliptical machine, and that isn't even running at all. 

Some might call this self-pity; others would call it being human, wanting that which we cannot have.

I am only human, after all.

And like all people, I have dreams. Some just have greater possibilites than others at becomming reality.  I admit this dream is more like a fantasy, something that will never come true.  From time to time, I become hyper-aware of my CP and wish to abandon it if only for a short time to feel what it's like to be "normal" in the realm of physical functioning, something which Forrest was able to achieve.

Walking and rolling?

Today I went to see a new doctor, a physiatrist.

My orthopedic surgeon referred me to him.  His specialty translates into helping people with disabilities gain the greatest level of mobility. 

The main reason I went to him was to discuss whether a wheelchair might be appropriate for part-time use.  It is true that I am mobile on my crutches and get around quite well.  I will admit, though, that winters are difficult, mostly on my joints and my body as a whole.  The doctor explained to me that when I use crutches to walk, it is almost like bench-pressing all the time because I am supporting my entire body weight on two very thin metal sticks.

I was very anxious coming to the appointment, and feeling a little ridiculous too.  I felt torn, and still do about whether or not a wheelchair would really improve my quality of life.  When using crutches, I can separate them from myself.  They are in a way more detachable than a wheelchair.  It is easier for others to see me separately form my equipment when I use crutches.  I have a sense that when I start using a wheelchair even part-time, it will be harder for people to see me for me, and not the equipment first.

There was one positive to this visit.  I liked the doctor very much, something that cannot be said for my orthopedic surgeon who I have been seeing since I was two years old.  First, his attending came in and started talking to my mother as if I was not there.  She corrected him within seconds and then I was allowed to speak for myself.  Aside from his initial faux pas, the attending wasn't that bad. 

He actually asked me questions, for one, and wrote them down instead of using the Dictaphone and talking about me in third person without acknowledging me as my orthopedic surgeon does.  His bedside manner is completely ridiculous and nonexistent.  Good thing he's a lot better with a scalpel!  I have the scars to prove it. 

The physiatrist was much better in his bedside manner because he actually acknowledged me and my concerns head-on.

I've heard about Botox being used to help those who have CP before but never in relation to myself.  I never thought to myself. Hmmm, I should try that

The same is true for medications that would help relieve spasticity and muscle tension associated with cerebral palsy.  I've never thought of taking medication, nor did I know that you could take medication to treat something like CP.  This notion is foreign to me.  Even now that it's available, I think to myself, Why would I start taking something now, I've lived without medication for 21 years why do I need it now?   I'm trying to wrap my head around all of this.  I really don't like medication and only take it when necessary.  Aside from that, it makes you drowsy, which isn't really conducive to being a college student.

So I've opted out of medication for now and have decided to try the Botox instead.  The Botox is supposed to help my muscles loosen up so I won't constantly be at odds with my body, trying to stretch it beyond a certain point when it wants to go the opposite direction.  The Botox itself is not without conflict as well.  It is by nature a poison, after all.  The notion of injecting such a substance into my body does seem strange, and this certainly will not be a Botox party.  Not for vanity, but practicality.  I have been told I will need anywhere from six to eight injections in my legs and that this will need to be repeated anywhere from two to four times a year.  I suppose it's worth a try to see what the benefits could be.

 Another thing I've been trying to wrap my head around is the idea of a wheelchair. Me + wheelchair = ? It may allow greater independence in certain environments; for example, if I had to travel several blocks daily to get from place to place in an urban environment.  In trying to wrap my head around the idea, I just keep repeating the word in my mind: wheelchair...wheelchair...wheelchair. 

In one way, I see it a wheelchair as a tool for greater independence in certain situations though not a replacement for my crutches.  And in another way, I see a wheelchair as acknowledging my CP in a way I have not don before.  I see doing so as almost a defeat, as if I am letting the cerebral palsy win and overtake me somehow.  I'm trying to shun these notions, the negative ones at least, but can't seem to shake them just yet.  I don't want to make myself seem more disabled than I  already am.  But I know people will probably react that way. 

There is a stigma with disability, but I perceive that it becomes greater the more severe it appears to the observer.  So I'm battling it out in my head trying to determine what is important and where I belong and how best to ambulate.

I do not want to let my CP win or overtake me or become part of my identity more than it already is.  Though I suppose the more I fight it, the more it becomes a self-fulfilling prophecy.  What to do with this I wonder? How do I turn this around and move forward in a positive way?

Can't drive 55

As originally sung by Sammy Hagar, a member of Van Halen "I can't drive 55." By my calculations, I have twenty-two driving lessons left, as I am allotted fifty-five in all. I know that I am lucky to have my lessons paid for by VESID as they are $175 per hour. The price can be loosely justified by the presence of the modified equipment.

But I don't want to go through twenty-two more bi-monthly lessons before I get my license.  I'm ready to put this in overdrive and make greater, faster progress towards my goal. Hopefully I can move forward with weekly lessons to speed my progress. I understand "getting your license demonstrates a minimum level of competency," as stated by my driving instructor.

However, having my driving license will open up so many opportunities to me. I can get a job and live in an apartment. I can go places without having to rely on other people. My drivers license is the key to so many pieces of my independence.

Say hello to Big Bird

Yes, I named my car.  Meet Big Bird, my gold Subaru Outback. My car has been modified so that I can drive using my hands only.  "Look, Mom, no feet!"

Pulling, or "rocking" the controls in my left hand causes Big Bird to accelerate. Pushing the controls forward activates the brakes. I use my right hand to control the steering wheel with the help of a knob which is fastened to the wheel. This knob is detachable so that a regularly-abled person can drive the vehicle.

The modifications also include a footplate which covers the accelerator and brake foot pedals so that my feet do not accidentally bump them. I typically do not to use this feature because I tend to position my feet far back so they are no where near the foot pedals. Also, I see the footplate as slightly inconvenient because when it is in place, my feet feel cramped and my knees tend to hit the metal rods below the steering wheel which connect the hand controls into the gas and brake system.

Warning: This vehicle has been modified with an adaptive driving device to be used by trained and licensed operators only
I love how Big Bird has a warning sticker when both the character and the vehicle couldn't be more rated G. The warning is very serious, however, as those unfamiliar with how to use the controls could easily get in an accident. The installers of the modifications have horror stories of their misuse. At a full service car wash, one of the attendants got behind the wheel of a modified car without knowing what they were doing. As a consequence, they plowed through a brick wall, pinning and ultimately paralyzing another co-worker!

Service dog files-vol. I

With the help of Capital District Center for Independence, I started pursuing the idea of a service dog two years ago and have been on and off with the application process ever since. Until now, that is. I have in my files six applications to fill out. The organizations I am applying to include Empire Servicedog Program Inc., Canine Partners for Life, Canine Companions for Independence, Canine Working Companions, Inc., and Paws with a Cause.

Each application follows the same basic pattern as far as requirements:

  • Service Dog Application (consisting of many parts)
  • Application Fee: $50 dollars each
  • Medical Information
  • Professional Reference Form
  • Veterinarian Form
  • Letter of Reference
  • Photo of Self

Looking at all these parts six times over is certainly overwhelming, especially when I have difficulty discussing my disability, let alone asking for help.

Part of the reason I have stopped and started it so many times is that I have difficulties describing and putting my exact form of cerebral palsy into words. Though pursuing a service dog will certainly enhance my life in many ways, I find it daunting because applying for a service dog is asking for help in a big way, and also acknowledging my CP to a degree that I have not done before.

It is for these reasons that I have shied away from it in the past, but there is only so much denial and procrastination that one can do. I can only benefit from doing this, but I have had doubts about it in the past, wondering if I would be perceived as a "good" recipient for a dog, having an odd fear that one had to be wheelchair bound in order to be a proper candidate.

A service dog is also a large financial commitment, with the fee being up to $20,000! So far I only have a quarter of that maximum amount saved in reserve for a dog. Otherwise, I'll have to take out loans or fund raise the remainder, though I've been told that fundraising for such endeavors has not been fruitful given the current economy.

It has occurred to me to post a wish on Wish Upon a Hero once I am placed with a dog to help pay for the remaining expense of the dog. However, I don't hold out much hope in this as I have participated in granting wishes on the site and seen people asking for the simple daily things I take for granted. So I am not sure I can be so bold as to ask for thousands of dollars from strangers.

I wish the world was flat

Sincerely I do. If the world was flat, and smooth I might add, it would make mobility much easier. I wouldn't have to stare at the ground as I walk. Sidewalks, in reality, are a particular headache when the roots of trees grow under and make it all topsy-turvy. I am not, after all, a Weeble. Even the natural seams can sometimes cause a problem. If placement of a foot or a crutch is not completed correctly, one might just end up kissing the sidewalk. That is to say nothing of cracks, which inevitably get worse over time.

Stairs are another issue of inconvenience, but they are everywhere. Ascending or descending, it doesn't really matter, though going down is always a bit more of a hazard.

Stairs are the primary reason I wish the world was flat.

In a world of flat surfaces with no peaks and just valleys, it should be deemed illegal to wax a floor, as this undermines the purpose of a perfectly flat surface altogether.  I would write my congressman!