A few years ago I learned the meaning of the word redemption. Take a couple of seconds to click on the link and breathe in the meaning of this powerful word. It's definition—rich, it's implications for our lives—profound.

After reflecting upon the significance of this word, I am led to this question: Is it really possible to experience redemption? Even in those small areas of our lives, which may seem insignificant, but are in fact, a source of personal loss and deep pain?

As a child, I felt as though I experienced loss and pain in both big and small ways. I'm sure if you thought about it, without too much trouble, you also could recall a memory of an incident that wounded your spirit in younger years. One memory I have is getting ready for recess in elementary school during the winter. It wasn't uncommon for me to be asked to stay in a few minutes from recess to finish some seat work and then head out into the hallway alone to bundle up.

I found this process of getting dressed to be perplexing:

• Shoes have to come off first, but boots have to be put on last.

• A sleeve is a great place to store hats and mittens, but they have to be temporary replaced in order to put on a jacket.

• Wearing your mittens on your hands while sticking your arm through your coat sleeve would seem to make the most sense, but it's actually a detrimental move because covering your fingers prematurely makes zipping your jacket nearly impossible!

Navigating situations that require problem-solving is challenging for any young elementary student, but because I also have poor fine-motor skills and hand-eye coordination, I not only found getting dressed to be challenging, I found it overwhelming.

It took me so long to get dressed that by the time I reached the threshold of the recess door, I would hear the whistle blow signaling that recess was over. I missed my free-time in it's entirety. I wish I could say that this happened just once, but..... It happened repeatedly and I never told anyone.

As I grew up, I learned to cope. I found outwear that had fewer zippers and ties. My hand-eye coordination improved somewhat as I matured, and eventually I completed assignments with efficiency, allowing me to get outside on time, but the sting of what had happened to me became a painful memory that I carried inside me through the years.

Can a pain like this one be healed? I can only imagine dialoguing with a counselor as an adult. I imagine she might listen to my story and then say:

• “I'm sorry this happened to you.” (So am I. While kind, your sympathies are not helping.)

• “Have you discovered the wonders of Velcro?” (As a matter of fact I have! I happen to own adult Velcro boots. They make me feel and look prematurely old for my age.)

• “I hope you've since learned how to ask for help.” (Sometimes, but the truth is that I am fiercely independent.)

Can pain like this be redeemed? A few years ago, I would have said no. The pain I experienced as a child getting ready for recess will always linger in my heart. There is no possible way that what happened to me could ever be repaired or restored.

Today, I hold a different perspective.

Today I work at an elementary school where I watch as the young students around me endure some of the same struggles to prepare for recess as I did. I found myself experiencing pain day after day as I watched first graders come in from recess and not know where to place their hats and mittens. I grew stressed as the bell rang at 2:15. I would observe students attempting to get dressed quickly and pack their bags in time to catch the bus. Memories of similar struggles flooded my mind.

You can imagine my shock and delight when one day, our Dean of Students approached me and said, “Jenny, will you show the students on the news how to hang up their coat and place their hats and mittens into their sleeves? Some of our students are struggling.”

I put my heart and soul into my demonstration and was asked for an encore presentation the following day. Eventually a video was created demonstrating this process and is shown annually. When a student stops me in the hall as they head out the door to recess, asking me to help them zip their coat or tuck in their gloves, I smile with thankfulness that redemption is possible, even in this little piece of my life. -- Jenny Hill http://jwalkinguphill.blogspot.com

The Sweetest Treat of All

 

In college I was required, along with all other pre-service teachers, to take a special eduction course.  One of our assignments was to spend 20 hours around people with disabilities.  I split my time between two places. During the day, I visited a middle school classroom comprised of students who were mildly cognitively impaired.  Approximately 10 adolescents learned together in a classroom with one teacher and three paraprofessionals.  I read with them in small groups using materials that reminded me of those used by the students in my mom's first grade classroom when learning to read for the first time.     Regardless of their reading level, I learned these students were smart!  One of them picked up on the fact that I startle easily, so he made it his mission to poke me every day until I jumped high enough to meet his satisfaction.  Occasionally, I would fail to startle so he would look at me with frustration and ask, “How come you're not doing it?” as his index finger jammed repeatedly into my side.  Just thinking about this makes me laugh.  I also met a girl with cerebral palsy which affected her speech.  One day while walking down the hallway, she looked at me and slowly formed the question, “Why do you walk like that?”  I looked into her eyes and said, “I have cerebral palsy.”  She lit up, “So do I!” 

 

 

Volunteering in this capacity was an eye-opening and humbling experience for me.  I was overcome with thankfulness that the first time I had seen the inside of a special education classroom was not as a child, but as a college student.  I was mainstreamed in general education courses throughout my K-12 schooling experience, pulled out only to work with the adaptive physical education teacher to stretch my leg muscles a few times per week.  On its own, CP does not affect intelligence.  However, it is often co-morbid with other disabilities such as mental retardation, seizures, and speech impairments, none of which, I have ever experienced.  I would often reflect on how much I have been spared while I drove back to campus.  As the semester came to a close, I realized I needed more hours of service to complete my assignment, so a friend suggested that I volunteer for United Cerebral Palsy's (UCP) Halloween Party.  Every year, UCP hosts a party for kids with all sorts of disabilities.  Dressed as the Flash, I staffed the bean bag toss for the majority of the evening.  Like volunteering in the classroom, I also found this experience to be incredibly humbling.  I saw a wide range of kids with disabilities, many who dealt with greater challenges than I do every day of their lives.  I was also struck with the fact that unlike a special education teacher who can leave the experience of disability when the school day is done, family members deal with this experience continually. 

 

This led me to reflect on my own family's experience, especially around Halloween.   Let me start by saying this:  I am a die-hard trick-or-treater.  In 1986, before I had surgery, I could hardly stand on my own and struggled to walk.  My brother had to support me in this endeavor, but we still went out trick-or-treating.  The Halloween Blizzard of 1991 did not stop me from going door to door!  Little comes between this girl and her chocolate!   There is however, one Halloween that will forever be ingrained in my mind—Halloween 1988.  That year I had told my mother that I wanted to be Minnie mouse.  She painted my nose black and found me a red top to wear along with mouse ears.  However, that year I did not have to worry about trying to squeeze a jacket underneath my costume because I had under armor of a different nature...a plaster body cast.

 

Earlier in the month, I had undergone an intensive orthopedic operation in order to correct my gait. My leg bones were broken and my tendons were severed.  I was placed in a body cast for six weeks to heal.  This experience impacted our family.  For a time, I had to stay in the hospital, usually one parent stayed with me, while my brother was at home with the other parent.  When I finally was able to come home, part of our house had to be rearranged so that I could sleep in the living room.  Carrying me upstairs to my bedroom was out of the question!  Getting me into and out the car required multiple people, I had to be flipped every couple of hours to prevent bed sores.....

 

At times, I suspect my elder brother of three years, Jeremiah, felt lost in the mix.  However, it was on Halloween that I remember him showing love and care for me in a tangible way.  While my mother or father wheeled me down the street through our neighborhood, it was my brother who took my candy bucket up steep driveways to the door for me, rang the bell, and explained to the greeter why I couldn't come to the threshold.  Without complaint, he collected candy for both of us that year, which we later went home, sorted in piles, and enjoyed!

 

Why am I reminiscent of this memory?  My brother Jeremiah is now a father to two precious little girls, Lily who will be turning two in December and Tizi (pronounced TC) who will be turing 4 early next month, just about the age I was when I had my operation.  His family has recently moved into a house in our childhood neighborhood and he will likely be taking the girls around the block to the very same houses we visited as kids.  When I think about this, I am again humbled and grateful.  I am grateful that while the girls will also be able to experience the care of my brother, they will not have to have him collect their candy because they are able to walk to the door themselves.  Their childhood will most likely not involve children's hospitals, invasive surgeries or long recoveries.  They might have to learn how to wear a coat under their costume (a trick for all MN kids!), but probably not a body cast.  Tizi spends Tuesday afternoons not at physical therapy, but at dance class. 

 

The walk of life living with a disability is a sometimes courageous one—one filled with challenge, and struggle, and insight.  I've certainly learned things along the way that have been profound.  I applaud those with disabilities who rise each morning, facing all of life's challenges with joy and perseverance.  I will admit that having CP has formed my character and in many ways has positively affected my outlook on life.  However, if am completely honest, there are some childhood joys that I wish I could have experienced: learning how to skip, wearing flip-flops, and riding a bike without training wheels to name a few.  Tizi and Lily will be able to enjoy all of these things and so much more—for this I am grateful, it is the sweetest treat of all.

 

Happy Halloween!

 

See Halloween photos here: http://www.facebook.com/media/set/?set=a.917462471251.2345705.56005890&type=1&l=84e4c65e37

“Why do you walk funny?” I often hear this question being asked of me by children when we meet for the first time. Peering into their eyes, I often see a look of compassionate curiosity on their faces, reflecting an honest desire to simply understand why I don't move exactly like the other adults they have met. They're trying to “connect the dots,” but they don't have all the information they need to figure it out.

I've found that explaining cerebral palsy to children sometimes proves to be a challenging and delicate task. To begin with, I've never really heard a solid consensus on how “cerebral” should be pronounced. Is it “sir-re-bral” or “sarah-bral?” Merriam-Webster condones both pronunciations, almost like “toe-may-toe” and “to-ma-toe,” so in the end, the easiest thing I've found to do is call it by its abbreviation, CP. To further complicate matters, it's hard, even for adults at times, to grasp how CP really has nothing to do with my legs and everything to do with my brain. Still further, there are circumstances when disclosing the details of my disability feels much too personal to candidly discuss, but these feelings of reservation are far outweighed by my desire to encourage the cultivation of curiosity in children. Certainly any question asked without a malicious intent is worth exploring, so I welcome the opportunity to provide an explanation.

Kids generally like interactivity and movement, so here is what I like to do, especially in large groups, when explaining CP.

I have everyone make a clenched fist with their left hand and then place their right hand around their wrist. I then give the direction to have the kids relax their fist and open their right hand. Watching as they complete this exercise, I ask kids if they can feel the movement in their wrist. They usually nod with understanding.

I usually tell them that “When you move, your muscles get tight, like when you make a fist, and they relax, like when you open your hand. Some of the muscles in my legs do not ever relax; they are always tight like your clenched fist. That makes it harder for me to walk, and sometimes I trip and fall. The name for this is called ‘cerebral palsy.’”

I then have kids repeat the words “cerebral palsy” because they are not words we use in every day language, but I think it's good to expose them to the correct terminology at least once. Then I tell them that I know it's a big word, but they can call it “CP” for short.

Once I'm done explaining, I open things up for questions. The most frequent questions I am asked is if it hurts (no), is it contagious (no), and did I hurt myself? (No, it was something I was born with). Inevitably, a few kids will raise their hands and share about a time when they have broken a leg or endured an injury. I appreciate their empathy and desire to relate the information they are hearing with their own experiences. Once all the questions are answered, I'm rarely asked about CP again because their curiosity is satisfied. Once they understand why I walk the way I do, they're not distracted any more by a slight difference, and we can move on to the tasks at hand.

So, what about adults?

I was confronted with that question a few weeks ago, when I stepped off an elevator and found a man staring at the way I walked, trying to put the pieces together in his mind to better understand my gait. He was a little embarrassed and I was more than a little uncomfortable when we found ourselves looking at each other. He knew he had been caught starring at me and I didn't know what to say. Should I condone staring and pretend that what happened was not rude and devaluing? On the other hand, why should I treat his curiosity with any less openness and warmth than I do with children? Sure, adults should have more “social graces” and hopefully have matured through life's experiences, but what if they have never met someone with CP, or are not accustomed to interacting with other people who have disabilities and just want to understand what they see?

In this situation, I had the unique opportunity to get to know this individual over the course of a few weeks where I learned more about his background. When the opportunity arouse, I shared my experience of having cerebral palsy with him, and I think he appreciated the explanation because it helped us understand one another with more clarity. It certainly broke the ice. The tension of that unspoken interaction in front of the elevator was diffused.

Does it take courage to share your story? Yes. Is the vulnerability it takes worth it? I think so. When asked in kind, people's inquiry about a physical condition can actually be a welcome sign of interest and concern, even an indication that they desire to understand your experience in order to see you more clearly and comprehend more fully who you are as a person.

In the end, whether you are an able-bodied person asking about CP, or the one offering your own personal explanation as one who has this condition, it is important to be yourself. To those who want to want to ask another person about their disability, I will offer this perspective. As long as you employ good communication skills and ask with care, I think it's perfectly appropriate to ask another person about their experiences of having disability. If they are comfortable talking about the subject, they may greatly appreciate your attentiveness. If a person is uncomfortable discussing their experiences, I think the best thing to do is drop the subject. It's not that you are being rude or insensitive, it's just that the person you are speaking with may need some more time before they feel comfortable articulating their story. It may be helpful to know that accepting a disability is a hard and painful process, one that may take several years. Learning how to communicate about this process is a craft, but in time most people do master the art of finding their voice. If you wait patiently, eventually people will open up and your relationship will deepen as a result.

If you are a person with CP and have a hard time discussing your experiences , there is hope. Practice dialoguing with others you trust. My own comfort level increased when I came clean with my friends, admitted my struggle to talk about CP, and enlisted their help. I brought over a photo album and over dinner shared my story with them in an environment where I felt accepted. Having a few positive planned experiences like these in private helped give me the confidence I needed to have spontaneous discussions with people in public. Just like the kids I have met, I too have learned how to say, “cerebral palsy.”

Every year I teach third graders how to use The World Almanac for Kids. They love it! It’s filled with pictures of popular movies, weird trivia, sports facts, and more! One day while flipping through the pages, I came across a list of lesser known holidays. Do a Google search, and you will be amazed at what you find! It would seem that every day of the year has been tagged with a theme. According to some sources, Sunday, August 7th, will be Friendship Day. Wikipedia claims that Friendship Day is a Hallmark Holiday. Still another site claims that the holiday has been moved by order of the United Nations to today, July 30th. At any rate, I’d like to take this opportunity to write a tribute to my friend Aaron Kurrell. We have known each other for at least eight years and we both have cerebral palsy.

Aaron and I first met while eating cafeteria food in the dining hall at St. Cloud State University. Introduced by mutual friends, Aaron and I quickly connected with each other because we both were studying to become educators. At the time, Aaron was pursuing a career path to become an English teacher, and I had dreams of becoming a school library media specialist. Our conversations often centered on our coursework, classmates, and the perceptions of our professors, not our mutual disability.

I’m usually uneasy at the suggestion that I would really “hit it off” with another person because we both have a disability. I often view having cerebral palsy as a physical characteristic, much like the fact that I have brown hair. I’m not automatically friends with brown-haired people any more than I am automatically friends with people who have CP, but befriending Aaron has been different. We became friends in spite of our common gait, but over the years I have come to appreciate how valuable it is to have someone in my life who personally understands the experience of living with CP. Today I would like to honor Aaron by sharing three things I have learned from him through our friendship.

The first thing I have gleaned from Aaron is a model of of self-confidence. When we met in college, I was struck by the fact that Aaron was so comfortable in the “skin he was in.” At the time, I was quite ashamed of the fact I had CP, and felt I was “above” the need for help or admitting that I had limitations. By stark contrast, Aaron neither wore his disability like a badge of entitlement nor did he walk around defeated by his limitations. Aaron simply accepted the fact that he had cerebral palsy. Without shame or pride, Aaron graciously accepted help when he needed it, and accomplished tasks independently when he didn’t. This attitude inspired me and ultimately helped me to become more accepting of myself.

Another thing I have learned from Aaron is that sometimes it is helpful to talk to another person with CP when interpreting awkward social situations. I’ll never forget the night I was at a party where someone watched me walk across the room and then exclaimed, “What are you, limping!?” Not sure what to do, I stammered, “I have cerebral palsy.” He replied, “I’m sorry.” I responded, “That’s okay, I have a very mild case, so a lot of people think I’ve been in a car accident or had an injury. It’s an honest mistake. ”

“No, I’m sorry you have that. ”

Suddenly, I was floored and furious. No one had ever offered me pity in my life! As soon as I got home, I called Aaron and lamented about the evening’s events. It was comforting to talk to someone who truly understood my dilemma. Over the years, Aaron and I have talked about many things including our shared startle reflexes, hatred of risers, long periods of standing, and stairs without railings. We both can’t keep our eyes open in photographs and struggle to walk while carrying items in our hands. We’ve both had public and private encounters with people who assume the need to pray for us for healing from cerebral palsy without asking our permission, and both park in “rock star” parking spaces. Aaron has more guts than I do when it comes to online dating—he doesn’t tell his dates that he has CP until he meets them, I like to tell them ahead of time so they’re not surprised. (This may be a gender difference; I’d love to hear reader’s opinions!) These sounds like quirky little nuances, and they are, but when I talk to Aaron about the little things that makes us different, it makes me feel normal.

Finally, Aaron has taught me patience. One difference between Aaron and me is that Aaron walks with crutches. This is insignificant except that when we walk together we have to move slowly so we don’t trip each other. I’ve also noticed that transitioning from sitting to standing positions takes a little more time with crutches; it’s okay not to rush when getting out of a car or standing to leave church.

In his book The Life You’ve Always Wanted John Ortberg was advised that if you want to be a spiritually healthy person, “You must ruthlessly eliminate hurry from your life” (p. 76). He even developed an evaluation tool to determine if you have what he calls, “Hurry Sickness.”  You can print out a questionnaire in PDF format. I tend to be someone who rushes through life whenever I can, oblivious to the world around me. When I’m with Aaron, I remember to appreciate the moment, take a deep breath, and observe my surroundings. Slowing down helps me to notice people, listen carefully, and be more fully aware and present. Ultimately, Aaron has helped me to become a better friend. Happy Friendship Day, Aaron. I’m blessed to know you!

References

Ortberg, J. (2002). The life you’ve always wanted. Grand Rapids, MI: Zondervan.

Becoming Dr. Hill

July 18, 2011

Tomorrow will be Tuesday July 19, 2011. Tomorrow's date may have little significance for you as a reader, but as for me, I believe that July 19, 2011 may turn out to be a landmark day in my life. You see tomorrow morning I will begin pursuing my doctorate degree at Bethel University in Education Administration.

When I think about the journey ahead a small part of me wonders if pursuing this degree might not be the smartest move I've ever made. There's a $300 monthly student loan bill that I will pay for the next decade upon finishing the program. I've been promised 12-15 hours per week of homework and am predicting that my free time and social life will evaporate as a result.

I suspect that at times I will be discouraged. Even though I absolutely love school and my endorphins seem to fire at the mere thought of studying, I am sure that pursuing this degree will not be a pleasant experience all of the time. In her wonderful book Expecting Adam, Harvard graduate Martha Beck articulates her feelings about pursuing her doctorate in such an accurate way:
“You might assume...[that] I found Harvard pleasant. Oh, how wrong you would be. Actually, I don't know if I ever met anyone at Harvard who found it pleasant. It seems to me (although I may well be projecting) that all the people there scurry anxiously from one achievement to another, casting wary glances over their shoulders, never quite sure that they've managed to throw failure off their scent. To me, being a student there was heady, exciting, even thrilling, but these sensations came laced with heavy doses of fear and misery. It was like having lunch with a brilliant, learned, witty celebrity who liked to lean across the table at unpredictable intervals and slap me in the mouth—hard. Was it interesting? Very. Stimulating? In more ways than one. Pleasant? I don't think so.”

What I have found pleasant was the excuse to purchase a new MacBook Pro and finally have high-speed internet installed at my house. My old laptop was purchased in 2002 and has a floppy disk drive, if you can believe that! When I purchased that computer, wireless Internet access wasn't widely used and no one had ever heard of Facebook. It feels good to have new technology at my fingertips!

What I have also found pleasant is the thought of how many doors this opportunity will open for me. I'll be able to increase my earning potential, meet a new cohort of people, and someday pursue career positions as a K-12 principal or make the leap into the world of higher education. I can't wait to crack open a book, engage in a lively debate, and write a research paper!

It's the sheer anticipation of this “heady, exciting, thrilling” experience that has lead me to reflect on how thankful I am to be moving in this direction of pursuing a doctoral degree. I'm thankful that I was raised in a family that values education. I'm also thankful for numerous people in my college career who frequently encouraged me to pursue a doctorate. I'm ultimately thankful that I found a program that fits my needs and I'm even thankful for the student loans that are making this journey financially possible!

Today has given me pause to reflect and discover that I am thankful that I wasn't born a generation earlier, or this opportunity may never have happened. It sounds inconceivable in 2011, but the reality is that had I started kindergarten in 1969, instead of 1989, I may not have had access to the public school system because I am a person with a disability.

Martha Minow, Harvard law professor, published a thought-provoking book last year called In Brown's Wake discussing how the landmark Supreme Court case Brown v. Board of Education continues to impact education today. Minow (2010) writes, “Compulsory education laws in the United States for many years exempted students with mental and physical disabilities, and many such schools excluded students or assigned them to separate institutions well into the 1970s” (p. 69). In 1975, the Education for All Handicapped Children Act (now known as Individuals with Disabilities Education Act, better known as IDEA) mandated that all public schools educate students with disabilities. In 1990, the language of this act was updated to include help for people with disabilities who wished to transition from high school to college. (See a complete special education history timeline).

Granted, I only have mild cerebral palsy, so the accommodations I have needed over the years have been limited. An Individual Education Plan (IEP) gave me access to adaptive education teachers who helped me stretch my hamstrings a few times a week during study hall. I worked with these professionals from kindergarten all the way through HS! It's challenging to keep a straight A student on an IEP, so eventually I transitioned to a 504 plan in HS so that my locker could be centrally located in the building and I could keep an extra set of text books at home so I didn't have to worry about carrying them while maintaining my balance.

While in college, I was able to receive much needed accommodations including extended time on tests in a quiet environment where I could concentrate, and priority registration so that my schedule allowed me to get across campus with as much time as I needed.

These are small things, but so often it is the little things that count.

Graduating on May 14, 2006 from SCSU was the best day of my life. My G.P.A. started with a 4, and my career ended with a speech. (Need some inspiration? You can watch my speech on YouTube!) My professors gathered around me with my family in a private lunch reception prior to the ceremony to share their sentiments and wish me well. After graduating, I continued on to earn my master's degree before entering the field of education. It was the family tradition (I am a third-generation educator and one of over 10 family members who teach) and the love of learning that inspired me to become an educator, but it is the students I have met that will keep me in the field. They truly have expanded my capacity to love!

I look forward to the years ahead toward becoming Dr. Hill.

Author's note: United Cerebral Palsy of Central MN played an essential role in my journey to obtain a higher education. I received numerous scholarships from UCP-CM, and was connected to a unique internship opportunity at the Library of Congress during my senior year. Due to budget cuts, there will not be scholarships available this year for students with cerebral palsy. Consider donating to UCP-CM today. Visit their financial assistance page for more information.

Sources Cited:
The except from Expecting Adam came from the New York Times Website: http://www.nytimes.com/books/first/b/beck-adam.html?_r=1

Beck, M. (1999). Expecting Adam. New York, NY: Berkley Books.

Minow, M. (2010). In Brown's wake. New York, NY: Oxford University Press, Inc

July 1, 2011

I hate exercising most of the time. It's a chore, it's a struggle, and I often find it to a frustrating and confining experience. I was mentioning these reoccurring feelings to an athlete who replied, “If you don't like to exercise, you haven't tried enough activities.”

Interesting thought.

Exercising alone, such as a walk around the block, can be okay, but I often find it lonely, boring, and lacking any sense of accountability.

On the flip side, I've found that exercising with others while maintaining a healthy sense of self-esteem is a hard thing for a 27 year old female with cerebral palsy to maintain in most public group exercise environments. When it comes to the local gym, it's hard to watch people right next to you twice your age run twice as fast for twice as long on the treadmill. It's hard to attend a fitness class only to feel overwhelmed and unable to keep up with your same-age peers who are seemingly running circles around you. It's also hard to interact with the instructors' questions, comments, and stares when they have had little to no training in adaptive athletics and despite their best efforts, have no idea how to accommodate your needs.

So, after hearing a few suggestions, and mustering up a little courage, I decided to take the plunge...into the pool.

Like many Minnesotans, I struggle with SAD and was desperate one winter to find some physical activity that I could engage in consistently and not absolutely loathe. I was willing to try almost anything to get my body moving and my endorphins firing.

I found water aerobics.

At first, I got flack from family and friends alike. “That's for grannies!” “I saw a water aerobics class once. There were about five people in the pool with a combined age of 3,000.” Pretty soon, I didn't tell anyone about my discovery of this one activity that I had grown to appreciate, because I didn't know how to receive people's teasing comments, weird looks, and general lack of understanding.

To the critic's point, water aerobics has its own unique culture. In the four venues where I have participated in a class over the past five years, I have only had one male classmate and one male instructor. This sport has apparently been taken over by the ladies!

At times, participating in water aerobics has made me feel old. (Currently, I think I am the only one in the pool who doesn't have the words to ABBA's Greatest Hits memorized.) Occasionally I look around at my classmates in the pool and realize that I am the youngest one there, sometimes by 25 or 50 years! Something inside my brain screams at me, “You shouldn't be having this experience right now, you're too young!” Like it or not, it is often among this group of people where I feel I belong. Many have mobility issues due to the aging process. Their range of motion is sometimes limited, they're concerned about balance, they can't do all the same activities as their peers on dry ground....little is separating us except a few decades. In many ways, these kind ladies who warmly welcome me each morning are my peers.

Yet, as I walk down the ramp stepping into the pool's cool water, I am immediately reminded of why I got out of bed at 6:30AM on my day off to drive across town in order to exercise with women who can order off the back of a Perkin's menu. I feel FREEDOM!

Suddenly, I am immersed in an environment that allows me to move in ways and in positions that I can not experience on land. Suddenly, I can cross-country ski instead of falling flat on my face! Suddenly, I can kick with greater stability because the water and the swimming noodle are holding me up. Suddenly, I don't loathe exercise, I actually like it!

I have been advised by physicians and long-time participants that you can't lose weight doing water aerobics because it is not a weight-bearing activity. The resistance of the water can help to build strength, but it is important to cross-train on land. The good thing about working out in the pool is that I can work my body harder and subsequently raise my heart rate for a longer period of time. The water environment encourages movement. If you don't move your body the entire time, you will become cold and miserable!

It's often when I come out of the pool after moving non-stop for 50 minutes that I ask, “Why do I feel like I just met someone in a dark alley with a large stick?” I have to remind myself, while I grab the Advil, that I did just work out. It's a funny feeling because you can't feel the impact of your activity while you are doing it in the water, but when you dry off, you can feel the effects of your work, sometime for days!

It is not only the freedom I feel and the health benefits I receive, but also the water itself that I enjoy. When I'm moving around in the pool, it is almost feels as if I am navigating within a giant hug. I feel warm in its embrace. My need for touch is satisfied. I also feel hidden. The neat thing about water aerobics is that if you are in the water deep enough, no one can see or critique any of your movements. They just see a floating head. I can work to the best of my ability without anyone making comments or asking why I'm not able to do the exercises in the same manner as other 20-Somethings. This discretion is important to me. It helps me not to make comparisons, doesn't challenge my self-esteem, and gives me the freedom to be myself.

I'll see you at the pool!

Note: I did some research online and found that water exercise is becoming an accepted therapy for people with cerebral palsy. Check out this video clip of 11 year old Sarah Grace. http://www.5min.com/Video/Walking-Under-Water-For-Cerebral-Palsy-175535659

June 21, 2011

June 19, 2011 was a landmark day for the Hill family. My grandfather, not only celebrated Father's Day, but also a milestone birthday; he became an octogenarian. A party was held at my parent's house in his honor. A small crowd of 23 people attended, with four more joining in via Skype.

The anticipation of this day jogged my memory to a YouTube video that had been forwarded to me years ago about an inspirational father/son triathlon team, better known as Team Hoyt. Once a lieutenant colonel in the Air National Guard, Dick has since retired from the military. His son Rick, now nearing 50, holds a degree in special education from Boston University. Rick also is a non-verbal spastic quadriplegic due to cerebral palsy.

Perhaps you have also seen their story on YouTube. Search Team Hoyt, and you will find several results. Look them up on Facebook, and you will see their wall is covered with messages from all around the world. However, it was Dick's recent book (2010) Devoted: The Story of a Father's Love for His Son, that really got me thinking. (Read more of the story, see the video, and find the book at:http://www.teamhoyte.com)

While in HS, Rick heard of a charity run to raise support for a teenager who had been in an accident leaving him paralyzed. His father agreed to run the race, while pushing Rick in his wheelchair. Following the event, Rick typed on his computer, “Dad, when I'm running, I don't feel disabled anymore (p. 87).” The rest, is history.

To date, Team Hoyt has run over 1000 races including the Boston marathon, numerous triathlons, and even the prestigious Ironman Hawaii competition. In each race, Dick pushes Rick in his wheelchair, pedals behind him on a specially designed bike, and pulls him in a floating dinghy through the water. As if that is not already amazing, I was shocked to learn that Dick wasn't even an athlete at age 37 when all of this started!

Dick had never learned to swim, and only mastered the skill once Team Hoyt began triathlon racing. He also hadn't ridden a bike since he was a child, and hadn't settled into a consistent exercise routine as an adult. Becoming physically fit to compete with world class athletes is a feat for any middle-aged person, let alone someone who is going to add a 110 pound plus companion to the workout!

I was further floored to learn that the Boston Athletics Association wasn't going to allow Team Hoyt to run as official entrants in the marathon unless they could qualify in Rick's age division, even though it was Dick who would be running the race, pushing his son Rick in his wheelchair. With a little training, they were able to accomplish this goal. Dick is now in his 70s, and the pair are still racing, making it a priority to appear at Boston every year.

Dick has been asked on several occasions to run by himself, but has never accepted an invitation. I think it may be because what drives him to accomplish these seemingly unbelievable tasks comes directly from his son. In his book Devoted, Dick writes about what empowered the strong team finish of the grueling Ironman Hawaii race.

“I knew the credit went to my son. He was my motivation. Something gets into me when I am competing along with Rick that makes us go faster. My strength comes from him, as if it moves from his body into mine. The strength that I got from my son that day enabled us to become Ironmen (p. 130).”

As I reflect upon this story, I am inspired first by Rick because of his perseverance and determination to live his life. He was 12 years old before a machine was built that would allow him to communicate. Dick says, “[Rick] told me later that he could handle not being able to walk or move his arms, but the inability to communicate is what bothered him most (p. 65).” I believe this is true. After speaking at a church service this spring, I was introduced to a young man with CP who was non-verbal and was immediately humbled by the experience. I've learned to cope with the way I move, but I would be lost if I was unable to speak; it's such a big part of life.

I am also inspired by Rick's commitment to obtaining a higher education. It took him nine years to complete his Bachelor's degree, taking only two courses per semester because it took him six times longer than his classmates to complete his homework.

His very involvement in the world of competitive sports makes me wonder what physical activity I could accomplish, if I would only try. Team Hoyt's motto of: “Yes You Can!” speaks of achieving lofty dreams and exploring endless possibilities.

It is Dick's story too, that also provides me with hope and inspiration. When someone dear to me is suffering, I often feel a deep desire to take their place. Rick expressed a reciprocal feeling when quoted in a 2005 edition of Sports Illustrated, “The thing I'd most like is that my dad sit in the chair and I push him once (p. 88).”

I recently met a girl with cerebral palsy in a body cast who is recovering from the same orthopedic operation that I had as a child. While visiting, I wished I could crawl up into her cast and endure her pain, immobility, and road to recovery that lies ahead. “I could do it again,” I thought. “Why does another person need to suffer when I already have? Can't I just do it in her place?”

The reality is, sometimes we cannot change people's circumstances or take their place, no matter how strongly we may feel. It is in those times, we may feel stuck, helpless, and doomed to merely watch what is being played out in front of us, but what I have learned from Dick Hoyt, is that maybe we can help others to bear their circumstances, finding ways to get behind people, so they can “stay afloat,” and move ahead in life.

I love the sentiment Rick shares of his father that is quoted towards the end of the book ( Read What My Father Means to Me online).“He is not just my arms and legs. He’s my inspiration, the person who allows me to live my life to the fullest and inspire others to do the same (p. 197).”

Happy Father's Day!

Sources Cited:

Hoyt, D., & Yaeger, D. (2010). Devoted: The story of a father's love for his son. Cambridge, MA: Da Capo Press.

Reilly, R. (2005). Strongest dad in the world. Sports Illustrated, 102(25). 88.

Every year, the faculty that I work with has an end of the year staff party. This year it was decided that we would go golfing, playing a round of 9 holes. This proposal piqued my curiosity and evoked my imagination.

The thought of me driving any motorized vehicle is a bit hilarious to think about in the first place, let alone one that goes off-road along an uneven terrain. The thought of then stepping out of said vehicle to whack a tiny ball hundreds of feet using my gross (like the play on words?) motor skills and hand-eye coordination was only going to predictably lead to frustration.

The solution: I asked to only putt once our team was on the green and to be a passenger in the golf cart.

The result: I had a really great time! I sunk the putt on the last hole helping our team make par in our golf scramble game. Want to watch me putt? Check out when I totally missed the hole on YouTube(www.youtube.com/watch?v=3uGB6aeYaRY).

It takes a lot less force and much more control to putt than I anticipated. Fortunately, everyone was encouraging of letting me simply experiment with this sport.

While I was out on the course, I made the following observations about the culture of golf:
1.) The setting is gorgeous. We had a really nice day and I was able to bird watch (one of my favorite activities) while my colleagues teed off. I was so engaged watching a great blue heron fly across the pond that I forgot I was in the middle of a game!

2.) I love the accessories! I had no idea there were so many items golfers can purchase to enhance their game. I was surprised to learn about magnetic place holders that can connect to gloves or a visor when not in use and the Never Bend (www.neverbendgrips.com) grips that can be placed on putter handles so you never have to bend down to pick up a ball on the green again!

3.) Riding in the golf cart was certainly a fun experience; driving one should be a sport in itself.

4.) Golfing is a fun way to spend time with friends and celebrate summer!

If you enjoy playing golf, you may want to check out UCP-CM’s annual golf tournament on June 20th , 2011, starting at noon, at Wapicada Golf Course (www.wapicada.com). It’s $90 per golfer, and all the funds raised go to support a great cause. More information is available on the UCP-CM homepage.

May 23rd, 2011

In her young adult novel Speak, Laurie Halse Andersen writes, “Gym should be illegal. It is humiliating.”

I certainly felt that way as a fifth grader when it came time for the swimming unit in physical education class. Having never learned to swim after repeated attempts at the sport, I was embarrassed by my lack of ability, and scared to let my peers in on my secret. I remember crying in angst while my parents held me in their arms the night before swimming started.

Prior to sending me off to school the following morning, my father affirmed my feelings in writing and encouraged me with these words, “Be courageous. It is hard to be on display, exposed for all to see.”

I was reflective of this childhood memory one weekend because I found myself leaning on my father’s words of advice as I got ready for church. I had agreed, along with several other people, to be part of a flash mob during both morning services.

(On a side note: A flash mob it is a well choreographed dance for groups of people to perform in public in the midst of unsuspecting crowds. Oprah’s staff pulled off a surprise performance during the premier episode of her 25th season when the Black Eyed-Peas were performing. Check it out here: http://www.youtube.com/watch?v=GqfHkjyC8aM&feature=related. Now, back to the story )

I was all excited to perform until I woke up Sunday morning and realized what a vulnerable act I was about to commit! Dancing is for professionals. Sure, I have all the words to Michael Jackson’s Thriller memorized, (to which I’ve been known to dance around my house from time to time pretending to be a zombie), but I wasn’t looking forward to dancing in public; I wasn’t relishing the idea of putting on display the fact that I don’t move well.

So, I once again took my father’s advice: Be courageous! I put on my back shirt a friend made for me, which reads “Agents of Awesome,” ( I needed all the moxie I could muster!) and headed out the door.

How did it go? The dance was taped using six different cameras and posted to You Tube. Check it out here: http://www.youtube.com/watch?v=StpMdtigNEI

I have to admit, my heart pounded the whole time while I waited nervously in my seat to join the dance. I also have to admit that I am glad it is over and now I can cross it off my bucket list: I have participated in a flash mob. Finally, I have to admit that it not only takes courage to dance in public, but maybe even more courage to enjoy myself and the way that my body moves. I often find it challenging to fully relax and engage in recreational physical activities, or appreciate other’s enthusiasm towards them, when such activities often serve as poignant reminders of my imperfections. It is in that moment that I need to pause and realize how much fun I could be having if I would simply change my attitude and perspective. The truth is, I enjoy dancing to music (I just prefer to do it in private)! It is fun to move my body to a good beat—even if I look ridiculous. I may not excel at dancing, but that doesn’t mean I should exclude myself from the joy it brings! Life is short, and there are many opportunities out there to have fun that involve movement—all it takes to is a little courage and a catchy beat!

Welcome to “The Walk!

Greetings readers and welcome to my new weekly blog through United Cerebral Palsy of Central Minnesota (UCP-CM)!