Cerebral Palsy Perspectives Featuring-Lisa Marn & Mark Seifarth

October 6th is World Cerebral Palsy Day.

Since I’ve had cerebral palsy (CP for short) all my life, I consider myself very knowledgeable of the disability. While I can share about my own experience with CP, it affects everyone differently. No two people with CP are the same. For additional perspective, I’ve invited two of Ohio’s strongest advocates Lisa Marn and Mark Seifarth to share their CP journeys along with me.

Shari-This may sound strange to some people but at the age of 52, I’ve learned to appreciate my CP. Who can say that they accomplished something every day? I can! Whether it’s putting on lipstick, feeding myself finger food, or typing a blog post, I consider each one a personal win because I’m able to do them independently.

My CP and I have developed a great “friendship”. After all, it is an important part of my identity, and I wouldn’t be the awesome Shari you know and love without it. It’s true that as I age, CP may make more things difficult to do, my disability has also taught me to appreciate life and count my blessings. At the end of the day, I will always find a way to Make Things Happen despite my CP.

Mark– Cerebral Palsy (CP) is considered a physical disability due many times to oxygen deprivation and brain damage. My experience is that no two people with CP are the same. So, CP is an ongoing journey, different for each of us. For me, especially in my early years, it was a journey alone. I had great parents, have a fabulous brother, and great friends. My parents actually saved my life after surgery. After 10 days on the critical list, they suggested an attempt to inflate balloons to empty my fluid-filled lungs.

A constant journey of body and mind, CP includes surgery, spasticity, physical therapy, physical therapy, physical therapy, and pain that flows and at times ebbs. But perhaps most of all, CP is an ever-present and ever-changing teacher. With CP, my intellect and physical self are always communicating – sometimes disagreeing. As I near age 70, and my pain and stiffness increase, I learn new ways to work with it and be humbled by it.

CP both tires and enlivens me as it forces me to swim and move each day, so I don’t lose ground. Winston Churchill may have said it best: “Success is the ability to go from failure to failure without losing enthusiasm”. True success for me comes from resilience and passion to keep moving despite setbacks and even failures.

CP has also taught me to speak up for myself when a medical professional tries to place an IV in my hand, when I know that has never worked due to stiffness and will just bleed all over the floor. CP has taught me humility in life and before God as we all have seen and unseen challenges. CP has taught me to support and mentor others on their journeys, and to have gratitude for the many people (including my brilliant spouse of 38 years) who have been there for me.

Lisa-Living with cerebral palsy for 52 years has not been easy; however, it has made me stronger and more stubborn than the average person. When people see me, they assume I am unable to do much due to the severity of my cerebral palsy. Many people told me I could not do the things I wanted to do; like graduate with a bachelor’s and master’s degree, live on my own, buy my own condo, or find a job. But I have achieved them all! When someone tells me I cannot do something, I want to prove him/her wrong! It drives me crazy when people judge me or make assumptions about what I can do without getting to know me.

Getting older with cerebral palsy has been difficult. I have more spasms, more pain, and less control over my muscles. There is very little research on aging with cerebral palsy; most has focused on children. Therefore, my doctor is not sure what is going on with my body. I say this to point out that cerebral palsy gives me challenges almost daily. It would be easy to give up and lay around, but I am too strong and stubborn.

As you can see, Mark, Lisa, and I all have different perspectives about living with cerebral palsy. My hope is that our perspectives have helped you become more knowledgeable about CP, appreciate people with this disability, and encourage you to include them in all aspects of life. Thank you for taking out time to listen to us and Happy World Cerebral Palsy Day. P.S. – Don’t forget to wear green in solidarity!