ucpcentralmn donate

Browse by


    • photo of jenny april 2011

The Walk

A blog by Jenny Hill

Welcome to “The Walk!

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

My name is Jenny Hill, I am 27 years old, and a previous scholarship recipient from UCP-CM as well as a person living with mild spastic cerebral palsy. I was raised in Sherburne County and spent six years studying at St. Cloud State University. I have a Bachelor’s degree in Information Media (2006) and a Master’s Degree in Educational Media (2008). I will be starting my doctorate at Bethel University (July 2011) to begin coursework towards a K-12 Principal Administrative License. I currently work as school library media specialist in a public elementary school.

I see this blog serving two important purposes:

  1. Highlight what is happening at UCP-CM and in the surrounding communities in which they serve. At least once a month, blog entries will focus on UCP-CM events, advocacy issues, or profiles of people with CP or those who champion people with disabilities. This blog is ultimately designed to be a resource for those who are involved with this organization and are interested in learning more!
     
  2. Acknowledge and give a voice to the unique way that people with CP view the world by honestly addressing routine challenges and observations that come with having cerebral palsy. Although I do not find it healthy to view people’s lives solely through the lens of limitation, I also cannot deny that having a disability changes the way people, including myself, view the world, altering both our physical gait and our everyday experiences as we walk through life.

Is this blog for you? I believe the answer is a whole-hearted yes! I believe it will enrich the lives of people living with cerebral palsy and other disabilities because it will be a place to find personal and relatable stories. I also believe people with able bodies will have the opportunity to expand their understanding of this condition in order to learn more about the experience of those around them with CP whom they love.

I look forward to walking with you on this journey! Check this site weekly for new blog postings, subscribe to the RSS feed, or follow this blog through United Cerebral Palsy of Central MN on Facebook and Twitter. Your comments are always welcome!


 

You are viewing 2 posts for January 2012

Frustrated By Fatigue

Frustrated by Fatigue I have always been a huge fan of DC Comic’s classic character The Flash. Ever since middle school when I was given the nickname Flash, my fascination was piqued by the Scarlet Speedster. He’s fast, wears a stellar costume, and has to be smart: hey, he’s one of the few members of the Justice League of America who has figured out that underwear are supposed to go underneath spandex pants! 

I was delighted when CBS’ hit show The Big Bang Theory made Flash popular again. One of its lead characters, Sheldon Cooper, shares a mutual affection with me for this speedy superhero. I found a flash costume in college and still wear it from time to time for Halloween parties or when promoting a book fair, but underneath the lightning bolts, mask, and red stretchy material lays a woman who wishes she had the boundless energy of her favorite superhero, but in reality, she struggles with fatigue.

This week I put in a rather long day at work, as many of us do, and proceeded to come home and continue working: dinner, laundry, exercise, homework…I finally laid my head on the pillow feeling GREAT for all I had accomplished….until I woke up the next morning, exhausted! (I know the description of my day sounds very typical, and it is, which makes this situation all the more frustrating! I want to ignore with every fiber of my being the estimation that it takes 3-5 times more energy for me to move than my peers, that the internet is littered with stories of young adults with cerebral palsy, also in their mid 20s who are struggling with fatigue, and that I too have occasional days where I’d rather not get off the couch or out of bed.)

I made it through the following day alright, but near the end, a colleague looked at me and said, “Hill, we must have tired you out! You’re moving half as fast as you normally do.” I looked at him, knew he was right; I was moving slow, too slow. When I got home, I climbed into bed, and on the verge of frustrated tears, took a much needed nap at 5PM in the afternoon. I felt so defeated and angry by this act of lying down, like fatigue had won today even though deep inside of me beat a passionate heart that had hopes of getting more tasks accomplished at home. When I woke up,

I was still discouraged with myself, frustrated by my fatigue, and filled with heated questions:

1. Why can’t I do more with my body, life, time, and energy?

2. Why do I have to battle with fatigue, I’m only in my 20s!

3. Why can’t I hide my limitations from my peers? Must I be so transparent? 4. Why can’t I be a superhero? I’m still wrestling with these questions, and if you have any insight on the answer to number

4, I’m all ears! In the interim, I’ve begun to consider that maybe saying “yes” to rest and welcoming the need to nap on occasion is the way in which I can actually accomplish more. 

Perhaps by delaying my desires for productivity one night may in turn give me the stamina I need to accomplish more the following evening. Perhaps I don’t need to see fatigue as a sign of defeat, but rather as a pathway to restoration. Do you struggle fatigue from time to time or frustration with your own limitations? Do you welcome or resist the need for rest in your life? What is one thing you could do this week to slow down or delay your own gratification in order to accomplish more in the future? References Picture Source: http://www.writeups.org/fiche.php?id=4699 CP and Fatigue: http://www.cerebralpalsytherapy.net/cerebral-palsy-and-fatigue.html


Are You Ready for Some Football?

Are you ready for some football? “Jenny, do you know who Adrian Peterson is?” My colleague asks me while sitting in the teacher’s lounge. “Hmm…” I ponder, “He plays for the Vikings right?” These types of exchanges are common in my daily life because in my world there are no sports. I doubt I could identify a picture of Brett Favre if you showed one to me. Perhaps it is because I could never participate in athletics I have never learned or paid attention to the rules of football. When people start to discuss the game I feel completely shut out of the conversation; they may as well be speaking in another language about something I have never seen before. I have no idea what people are taking about or why they are so enthusiastically fixated on this game of brutal attack. All of this makes me wonder: why do people like watching football? In the hours of broadcast footage that leads up to, includes the Super Bowl, and its post game analysis, there is only an estimated 11 minutes of action taking place on the field. For the uneducated viewer, this can seem like a waste of time. Sure, there has to be skill involved. Moving a football stealthily down a field reminds me a bit of playing chess, each player carefully executing his role, but when players tackle each other and dance in the end zone, I wonder if the fascination with the sport is vicarious in nature. Perhaps the people watching wish they were out on the field, demonstrating their own strength and brutality? Aware of my ignorance, and in search of answers to my burning questions, I made it a goal this year to learn about the game of football by the Super Bowl…except so far I have “fumbled” in my efforts. Let me give you a quick “run down” of my “game plan.” 1. I asked a friend who coaches to send me a YouTube video explaining football. He kindly sent a video entitled, “Helping Women Understand Football - Tammy Burgess & Jim Harkema”. Perhaps my lack of understanding is gender-related, but I found this video to be confusing. I got lost at the coin toss—I’m not kidding! What in the world does deferment mean? 2. So, somewhere between turkey and pumpkin pie, my uncle Mike, a high school football coach, explained this concept of deferment to me during the course of Thanksgiving dinner. He also used his knife and fork to explain the process of scoring. I somewhat understand how this works, but… 3. The following weekend I was invited to a friend’s house for lunch and an afternoon of watching the Vikings. I realized then and there that not only don’t I understand football; I don’t have the motivation or drive to grasp the rules of the rules of game. I simply have no prior knowledge to which I can attach new information, because there are only three things I know about football, all of which I have learned from reading books; perhaps I can teach you a thing or two: a. The term “blitz” is named after the German style of “lightening war” called Blitzkrieg used in WWII. b. The huddle was first used at Gallaudet University so the students who were deaf and hard of hearing could conceal their signs they made to each other while planning their next play. c. Eli and Peyton Manning have authored a children’s book called Family Huddle. So will I be in front of a TV on February 5, 2012? Absolutely! I may not understand or appreciate the game, but the food is always delectable, (the first time I had ever had homemade pizza cooked on a stone was at a Super Bowl party; I now own two of them), the half-time shows are epic (I was first introduced to Michael Jackson in 1993 when he performed at half-time. I asked my brother if it was Sandi Patty singing because I had no idea who it was and I was a third-grader. LOL! I am now a hard-core fan and even dressed like him for Halloween), and it’s the commercials that everyone really seems to love (My favorite one from last year is below). In the end, with the season I hear the Vikings are having, perhaps ignorance is truly bliss. Darth Vader Commercial: http://www.youtube.com/watch?v=R55e-uHQna0