Saturday, August 20, 2011

"Why Do You Walk Funny?"

“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. 
Photo by: A. Foreman, Zeteo Photography

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.”

Friday, August 12, 2011

Miracle Treat Day Pics

Sign outside of the St. Michael DQ

Good Morning!

Yesterday was an exciting day of DQ firsts!  I have never eaten 2 Blizzards in one day before!  (I consumed a mini Oreo Blizzard following my salad at lunch before taking three of my friends: Camry, Tiffany, and Katrina to DQ after dinner.  Our treats are pictured below.)
Two Midnight Truffle Blizzards, One Butterfinger, and One Double Fudge Cookie Dough

I have never in my life eaten a medium blizzard but had a Freudian slip while ordering and upgraded to a larger size without realizing it.  It was a great blizzard, BTW.  My friend Tiffany introduced me to the Midnight Truffle flavor, and now I am hooked!
Camry, Katrina, and I sitting in the parking lot at DQ.  Photos by: Tiffany Kubly

Finally, and most importantly, I have never seen so many people at the St. Michael DQ!  It was so crowded that we had to eat outside on the ground in the parking lot!  Yay!  There were many kids in the store, the drive thru was crowded, and the picnic tables were full!  I just kept thinking about how this money was going to be used to help benefit kids like me who are patients at Gillette.  I wanted to shake everyone's hand and thank them personally for ordering a blizzard, but I decided to restrain myself.  I did, however, wear my DQ Miracle Treat Day sticker proudly for the remainder of the evening.

Wearing my sticker proudly

I have not heard the official results of yesterday's fundraiser, but according to the Miracle Treat Day Website (, "Since 1984, DQ has raised over $86 million for Children's Miracle Network Hospitals-including $5.5 million in 2010." I hope their goal was surpassed yesterday!  I also learned from Gillette's Facebook page ( that if you happened to miss Miracle Treat Day, you can still give to the hospital.  Details are here:

Finally, I had one loyal friend, Aaron, send me a picture of a Blizzard indulgence.  Aaron, who I profiled on July 30, sent me a picture of his parents enjoying their ice cream yesterday:

I know several of you still purchased Blizzards yesterday, but didn't take a photo.  A huge THANK YOU for participating.  

Thursday, August 11, 2011

Miracle Treat Day 2011


I’ll never forget the first time I saw this symbol on the wall in the lobby of an orthopedic clinic. Next to the picture of a crooked tree tethered to a board were the words, “Orthopedics, to straighten the child.” My mom, sitting next to me said, “Jenny, that’s you!” 

Tree of Andry, Sculpted by Douglas Kiburz, MD
Image from

While most babies learn to walk between 9 and 18 months, I learned to “walk” at age two. Both of my feet turned inward and I was always up on my tiptoes. My left foot dragged upside down behind my right. I often had to keep my hands in the air so I could simply balance, but I fell often. Something had to be done.
How I used to walk

Thankfully, my family didn’t have to look any farther than Gillette Children’s Hospital in St. Paul, MN. Their Website states that “In 1987, Gillette opened their Center for Gait and Motion Laboratory and at the time, was the only one available in the upper Midwest."  In November of that year, I became a patient.
At Gillette's Gait and Motion Laboratory
November, 1987
Prior to the development of this diagnostic technology, a surgeon would operate on a child, cast, and observe a child post recovery, sometimes operating multiple times before gaining the desired result. While multiple surgeries are still often necessary for children with CP, the Gait and Motion Laboratory helps to provide accurate diagnostic information limiting the amount of necessary procedures a child must endure because the information helps to customize surgeries in order to address each child’s unique gait. 

Waiting in my PJs to enter the operating room at Gillette
October 1988
Following my visit at the Gait Lab, Dr. Steven E. Koop performed a surgery where my both of femurs were severed and rotated out. My tendons were also lengthened so my feet would stay on the ground. I was in a body cast for six months while I recovered. Months of physical therapy followed and I now walk with only a slight limp. Amazing! The care I received at Gillette changed my life because it enabled me to become independent for a lifetime. 

In my cast during Halloween

Learning to walk again during a physical therapy session at Gillette

I am grateful for the work that the professionals at Gillette Children’s Hospital continue to provide for children with cerebral palsy and other disabilities. That’s why I am asking for you to consider participating in the Dairy Queen Miracle Treat Day today, August 11, 2011.

Participating in Miracle Treat Day is simple. Go to a participating DQ today and purchase a blizzard. A dollar from each Blizzard sold will be donated to a Children’s Miracle Network Hospital. In MN, some of the proceeds will directly benefit Gillette and ultimately kids with CP. 

Image Source:

You can find a participating Dairy Queen location on the Miracle Treat Day Website. You can also peruse all the various blizzard flavors via DQ’s Website. The blizzard for the month of August is Nutter Butter with peanut butter crème filling. I tried a mini blizzard on Tuesday; if you love those peanut shaped cookies, that one’s for you! In years past, DQ has further shown their generosity to participants on Miracle Treat Day by giving coupons to their customers. Take a picture of yourself and your blizzard and I will post it on my blog.  (Note: If you want to send a picture, you can send it to Include your name, blizzard flavor, and DQ location if you would like and I will post that too. )