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?