6 Things I Wish Everyone Knew About My Journey with Cerebral Palsy

1. Please stop apologizing for my condition.

For me, cerebral palsy is just part of who I am, like my brown hair and eyes. Personally, I believe God created me on purpose for a purpose. I like myself, and while sometimes I might wish for more mobility, when people express regret over my circumstances, it makes me feel like they think I might be a better person if I could walk. We can’t know for sure, but I could very well have become a totally different individual. Also, keep in mind that I am not any more broken than anyone else; some of my shortcomings might just be more visible than others. I don’t need to be fixed. Having come this far trusting God, I think that He is using me right where I am at. If He chooses to heal me now, fine. If not, I can wait until I get to Heaven.

2. I don’t see myself as particularly brave or inspirational.

I believe I am just a child of God, falling short like everyone else. Dealing with the hand I have been dealt is a challenge, but I try to do so with positivity. If I do confide in you about my struggles, it is not because I seek attention, it is because I trust you. Sometimes I just need to be real about what is happening in order to keep my sanity. Deep down,  I fear causing people to feel annoyed, or burdened by my troubles.

3. I am so happy you found a treatment that works for you, but…

Feel free to share it with me, but keep in mind that my diagnosis is complicated. I have a team of specialists I consult with regularly. Ultimately it is my decision whatever course I take with my health, so please respect my choices. Remember that you most likely have no idea what it is like inhabiting my body. I will do the same for you.

4. Words are important.

I am sensitive about this because I am a writer. It is important to me that people use phrases that protect my dignity and also that of others. Don’t refer to my cerebral palsy unless you have to. It is a component of who I am, but it doesn’t comprise all of me. In my book, the most offensive terms are “handicapped” and “crippled.” I understand you might not comprehend the “correct” descriptors to utilize. That’s OK, but be prepared to embark on a lengthy discussion on why I am offended, especially if you are the fifth person to call me something I consider derogatory in a given day. If you are stuck, my name is Carolyn. I prefer that to anything else. One last note, my wheelchair is not confining, and I do not suffer from my disability. My mobility device gives me freedom, and I gravitate towards verbs like “battles,” “conquers,” or “lives successfully with” to describe my experiences with cerebral palsy.

5. I get that you want to protect me, but if you are close to me, keeping me in the dark on relevant issues will not help.

Yes, I balance a lot of elements every day, but that should show you I can handle tough situations. I am a grown woman, and I want to support you by lightening your load, the same as you do for me.  I am smart, resourceful,  and might be able to come to your aid. While I lack the ability to leap tall buildings in a single bound, have you thought about what I do well? There are many areas I excel in. Trust me, if I find out I am the last to discover something vital, my feelings get hurt beyond measure.

6. Suffering is personal and relative.

I really try hard to count my blessings, but if I am having a bad day, I don’t necessarily want someone to remind me that others have bigger challenges. In that moment, I am at the end of my rope, and I just need to acknowledge my unique valley before moving on to a happier place.  If you have experienced similar issues, I appreciate your sharing, but make sure it is equivalent. Stubbing your toe in the middle of the night may be devastating to you, but it is light years away from spending 38 years unable to control your muscles. Just consider if you have actually “been there, done that” before you speak.

Follow this journey at Carolyn’s Creativity Circle.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.