A Journey With Cerebral Palsy

Twister was another popular game during my youth. It asked for a person to place their hands and feet in different places on a mat. Each mat or twister board had colored circles in different positions. The game had a small board in which to spin an arrow, when the arrow stopped it would dictate a color and limb of the body. For instance, it could read “left foot, blue” or “right arm, red.” Multiple people would be playing, requiring you to reach around other bodies to find the color required. All of this was done while balancing your body in the air. If the balance of your body was lost and you fell, the game for you would be over. Twister was another game while growing up that didn’t work for me to participate. Cerebral palsy caused the movements to prove beyond my ability. The disability was making my muscles tight, which sapped them of their strength. Cerebral palsy also made holding my body off the ground and in one position virtually impossible. However, just as hopscotch has become a training tool, so too has twister. The game provides a good challenge for Bernard to use with me today. We have just begun working with the concept. Twister has proven to be a process we will have to work with to improve.

Twister often would bring some feelings of isolation. However, while growing up there were many things I could participate in with friends. The activities always seemed more challenging for me, but I could keep up to some extent. Things like riding a bike or playing basketball with classmates in the back yard. Golf and skiing also worked, even though it became more challenging to keep up as we aged. My friends seemed to be gaining athletic ability that was hampered in my world. Twister was slightly different for me from an activity like hopscotch. Even though I couldn’t play twister, because holding my body above the mat simply didn’t work, there was a way to participate. The game called for someone to spin the wheel and tell people where to move on the Twister mat. So, that would become my role in the game with my friends. With cerebral palsy, there can be things that are too challenging to fully participate. However, many times things can be done to feel included, like doing something that can be done. Even though it was difficult to accept I couldn’t fully be part of the game, it was nice to at least be included to some degree.

Now, years after spinning the wheel for friends, Twister has become part of my training. Bernard brought out the circles we have been using to work on hopscotch. As he set the markers out on the AstroTurf, I didn’t understand what they were going to be used for. He set out a few of them and gave me a visual example of the exercise. It was basically an abbreviated form of the game Twister. Bernard wanted me to begin from a push-up position, he would then have me move a hand or foot on his command. Each of the circles were numbered with a post-it note. Holding myself in the push-up position has always been one of my most challenging tasks. So, having to hold myself above the ground and move my limbs would be a good challenge. On our first experience with the game, moving my feet individually seemed to be the easier task, even though it was far from easy. Moving my right hand from one circle to another was probably the next most challenging, but with effort could be done. However, moving my left hand to another circle was virtually impossible. Our first attempt was pretty challenging, as I kinda slogged through the exercise, not being able to move my left hand hardly at all.

The following week it would be time to give the Twister game another shot. This time we wanted to take video of the process. Filming the exercise allows for a couple things to happen. It allows for the tracking of progress from where we are today to where the exercise could progress. Showing that even with cerebral palsy, improvement of stability, coordination, and strength can really take place. The video allows me individually to take away a couple of things. It provides a tool for me to look at the things I can work on improving. Things I may not be able to see or feel while engaged in attempting the movement. Watching myself on camera also helps me further along my journey of the acceptance process. We have reached the point at which I can watch myself without much embarrassment or shame. So, from here it feels important to continue viewing myself under different situations. The next step I wanted to take in the journey was listening to myself speak during the video. Listening to my speaking voice has also been a challenge for me throughout life, but has become easier to accept through the last few months. So, we set up the camera on a platform, letting it freely record a portion of our workout.

The first edit made to the video taken of our workout was my second attempt at Twister. Bernard took the circles we had been using the first time, which we also use for hopscotch, and placed them in an easier pattern than my first time. The circular pads were set up closer to my hands and feet, providing a situation where my limbs wouldn’t be required to travel as far. Again, he had me begin from a push-up position. The video provides a good look into how challenging the game has been. The first thing Bernard requested was for me to move my left hand, which has always been the most challenging. The movement of that hand requires all my concentration and the handling of my fear. Moving my left hand in that push-up position has always brought fear of failing and falling. It takes much of my concentration to simply muster up the courage to give it a shot. In the video, Bernard can be heard reminding me to “tighten up” referring to tightening my core. Remembering to tighten the core would make the movement more stable, but I seem more concerned with just being able to execute. It can become overwhelming. However, moving my feet and right hand, though not easy by any means, didn’t bring on the fear. The final movement of my right foot was also challenging, as my concentration was waning, I moved my foot in the wrong direction, then couldn’t get it back to the correct circle. Twister has shown itself to be a good challenge.

We made another attempt just a couple minutes later. During this attempt, Bernard didn’t have me move my left hand first. The first movement was of my right hand, then my left foot, next my right foot on the same mark as my left. The final stage would be an attempt at moving my left hand again. This time, moving the left hand at the final stage would be even more challenging. My energy and concentration was more depleted from the concentration involved with moving the other limbs to begin. When it came time for the final stage, I concentrated to the best of my ability. You can see me making a couple attempts to lift up the left hand for movement, but it didn’t want to budge. Finally, my left side simply broke down, without being able to move. When we gave it another attempt, it didn’t even come as close to the first one, my knees went down in support. It was time for the movement to change, the push-up position was proving too difficult for the left hand to be moved. My balance and stability would require more work in order to complete Twister from the push-up position.

There was a way to modify Twister, making it possible to begin from somewhere. Bernard introduced a mat to kneel on. We began the Twister game again with my knees on a mate. The idea was to provide extra support while working on the mobility of my left arm. This time Bernard made the movement of my left arm slightly more complex, seemingly due to the support of my knees. He wanted me to move my left arm across the body, touching circles on the floor, placed above my right arm. The first attempt was again too challenging for me to execute. My left hand touched the first circle, then the second, but there wasn’t enough stability to move my left arm back to its origin point. It was a struggle inside my mind again to think about moving my left arm back, having it fail to budge. When my left arm finally moved slightly, the body collapsed on me upon the attempt at getting the movement done. There was frustration in my mind at failing to have my left arm perform the task being requested. It almost makes me sad when the system breaks down in that manner.

With the collapse of my left arm again, Twister would require another modification. On our following attempt, Bernard requested that my knees be moved toward my arms an inch. I obliged, moving my knees an inch forward on the workout mat. The move would provide more stability with which to work the exercise. On our next attempt, my left hand found the stability to reach across my body, touching the two circles. As my hand returned to the origination point it was able to return almost the entire way. The movement had reached the point of success for me to improve. We had found the place where we could begin improving from. Bernard had me perform the exercise from my knees one more time. Again, my left hand reached across the body touching the two circles above my right hand, the return was again almost entirely back to its origination point. Reaching across my body, with my knees supporting me, was a more challenging arm movement, than the smaller arm movements being attempted from the push-up position. So, Bernard had made Twister easier by doing it from the knees, but still implemented challenges by having my left arm move across the body, instead of remaining on the same side, like in the push-up position. We will build from this place, hoping to eventually perform Twister from the push-up position.

Cerebral palsy makes life more challenging. But, challenges in life don’t seem to be a bad thing. It does however feel that we can go a couple different ways with our challenges. We can walk away from them, which appears the most convenient or easier path. The other option would be trying to embrace our challenges and take on the task of battling them. Cerebral palsy has often had me feeling discouraged and caused me to turn my back on the challenges. It wasn’t fun growing up while friends could play games that didn’t work for me to participate. Sometimes there would be ways to feel included, like spinning the wheel on the Twister board. But, I still wanted to find a way to take on the challenges someday. Thankfully, here we are taking on the challenge of many things that eluded me during my youth. It was a process of sticking with the challenge overall and finding people who could help. Now, we work the journey from different angles without truly knowing how much improvement can be made.