A blog by Jenny Hill
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:
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!
“What do I like to read?” My friend looked at me, repeating the question I had just posed to him and then looked away to think for a moment. “I don’t think I’ve read an entire novel since the ‘90s…”
It’s no secret—I love to read! With February tagged as I Love to Read Month, I’ve been considering the reason why I’ve been drawn to books ever since I sounded out all the words in Jan and Stan Berenstain’s Ready, Get Set, Go! I think the answer lies in the fact that books have always given me hope.
As a child… My parents needed to find a way to explain the hospital environment to me so that I could prepare for the experience of undergoing major surgery. One afternoon, while spinning the wire rack at the local drug store, I came upon a book entitled A Visit to Sesame Street Hospital where Grover needs a tonsillectomy. I learned from the illustrations that I too would soon be encountering friendly adults wearing masks and gowns and eating food off of tray tables. While different from life at home, I had nothing to fear! As memory serves, I entered the operating room with a smile on my face!
In fourth and fifth grade… My self-esteem began to plummet as I struggled to make friends at school. One evening my dad came home with an article published in Newsweek written by a sophomore at Wayzata High School named Angie Erickson. Her twin sister Stephanie was born with no birth defects, but Angie has cerebral palsy. Angie spoke to the tenacity, resiliency, and determination it was taking to endure people’s comments, actions, and exclusion towards me because of my disability. Then she posed an interesting thought: perhaps those who are acting this way are hurting more than I am….
In middle school… A courageous woman named Gianna Jessen was interviewed on Focus on the Family telling her story of her mother who chose to have an abortion at age 17. When the saline injection she was given forced her into labor, Gianna was born alive and, as a result, lives with cerebral palsy. The book sat by my bedside and I read it over and over again, intrigued to hear the story of another girl with CP, fascinated with the fact that she knew exactly why she had a disability, because the exact cause of CP, for so many people, is unknown.
Shortly after the Columbine High School Shootings… I sat at my own high school, reading Frank Peretti’s Wounded Spirit. This book was written partly in response to this tragedy, but also to share Peretti’s own story of pain and healing growing up with a highly visible condition called cystic hygroma. At the end of the book, Peretti makes an audacious claim: Adulthood may actually bring some relief to the awkwardness of being a teenager. I held on to the hope that there was life after Physical Education class, I wasn’t going to be swimming in a pond where I was being constantly compared to the physical abilities of others forever!
Towards the end of graduate school…. I wrestled with the reality that I was going to have cerebral palsy for the rest of my life, and wondered what its implications were going to look like as I began to journey into adulthood. While reading the book Waking, I felt as if it’s author, Mathew Sanford, (fellow Minnesotan and quadriplegic) pulled up a chair and began to mentor me on healthy living as an adult with a disability. I learned that I didn’t have to feel pressure to see my disability as something that needed to be conquered or overcome, but rather a reality that can simply be accepted. With every step I take my body is working as hard as it can, even in the midst of challenge, to move exactly as it was designed. This unique grace is in itself, beautiful.
Today… I am working on my own manuscript, telling of my with cerebral palsy. Someday I hope my story can offer hope to someone else the way so many others have already done for me. Why do you love to read? What books have you read which have offered you hope? Have you ever read a book where the characters helped you understand your life from a clearer perspective? Has your own reading journey ever compelled you to write?
A few weeks ago while out on a walk, my precious 4-year-old niece, Tizi, looked up to me with her smiling brown eyes and asked, “Who’s your husband?”
“I don’t have a husband honey.” I answer. Needing more information to understand my response she continues,“Then who do you have at your house to love you?”
“I don’t have anyone at my house.”
Perplexed, Tizi turned around in her stroller, faced forward, and we continued on our walk.
With Valentine’s Day this month, I’ve began to wonder: what effect does having CP have on marriage and dating? I did some digging, and I can’t say that I loved the results.
Consider the following statistics:
• Research has consistently shown that adolescents and young adults with CP date later in life than their peers and have fewer social relationships.
• An analysis of six different studies found that 10-15% of adults with CP were married with the mean average marriage rate falling around 12%.
• Marriages are also affected by those who parent children with disabilities. One psychologist noted that many studies do point out higher divorce rates; for families with children with autism, there have been rates quoted as high as 85-90 percent.
The implications of these statistics can be discouraging. I can’t predict the future, but I do sense, by reading these stats and by knowing myself that I am probably going to experience a period of sustained singleness.
If this is true, then here are three things that I wish people would understand about singleness:
1. Sometimes my adult responsibilities are going to look different than my married peers. I get a little frustrated when people say to me, “You don’t have any responsibilities because you don’t have a husband or children. You can take on... (fill in the blank: an extra committee, project, volunteer opportunity etc).” I’m starting to learn that instead of being hurt by these comments, I should take time to listen harder to those speaking to me, realizing that I don’t fully understand the commitment and sacrifice it takes to raise a family, and perhaps don’t always appreciate the freedom I have in my life right now to accomplish some of my goals. On the flip-side, I wish others would understand that I feel a strong sense of accountability having large amounts of unchoreographed time, and with this freedom comes responsibility. It’s allowed me to take on tasks such as drafting a manuscript for a book, pursuing my dream of obtaining a doctorate degree, working full-time, loving my nieces and nephew, and owning my own home.
2. Sometimes being single is glorious, and sometimes it is lonely. Like I’ve often heard about marriage, being single is both hard AND great! At times the quietness of my house greets me like a friend, offering rest at the end of a draining day. Other times, I experience the stillness of my house like someone who is giving me the cold shoulder. This can be hard to embrace, but I’ve found that being alone sometimes makes the interactions I have with others richer and deeper. I savor it.
A few weeks ago I came home feeling a little under the weather, wishing that someone was around to offer comfort, but 4:30PM is the wrong time to bother people as they transition from work to home. However, a few moments later I checked my voicemail to discover that a friend had called on her way to home to see how I was doing. We ended up talking for a delightful half hour. I felt remembered and she got a chance to vent about work-related stressors before picking up her son from daycare. It was just the TLC we both needed!
3. Finally, and most importantly to me, I need consistent, appropriate, non-sexual physical touch from family and friends. I know we all receive and give love differently, but touch is my tip-top love language. Even though I may have the opportunity to be around many people throughout the course of a day, it’s easy to go without being touched in healthy ways: a pat on the shoulder, a touch on the arm, a hug. I’m trying to get better about communicating this need to my family, and I find that my friends who know me best offer a hug voluntarily. This is particularly important to me because, as one blogger said, “Some researchers have described the need for touch as "skin hunger," suggesting the desire and need for touch is an actual craving, much like hunger for nutrients and water, exist in our physiology.” I’ve experienced this hunger and also the relief that comes when someone holds me in their embrace.
Singleness is a mystery that I have been asked to hold. The question of “Will I ever get married?” is one I will continue to frequently ponder, but like Tizi, I want to intentionally face forward and continue on my walk.
This Valentine’s Day, whether single or married, I hope you can realize that the single most important thing a human being can know is how much they are truly loved. Show love for someone today! Happy Valentine’s Day!
If you’re married.... What do you wish single people understood about marriage?
If you’re single.... Are you content in your singleness, or do you long for marriage? How do you meet your needs for human interaction?
If you’re human..... How do you feel about giving and receiving touch to others?