Lessons I’ve Learned After Accepting My Cerebral Palsy Diagnosis
Cerebral Palsy (CP) is the most common lifelong disability. CP describes “a group of permanent disorders of the development of movement and posture, causing activity limitations, attributed to non progressive disturbances that occurred in the developing fetal or infant brain” (Source: Frederick M. Azar MD). It is often accompanied by disturbances of sensation, perception, cognition, communication and behavior, epilepsy, and by secondary musculoskeletal problems.
There are four types of CP: dyskinetic, spastic, ataxic, and mixed. The most important fact to remember is: Cerebral Palsy looks different from person to person. I have mild spastic diplegia as a result of brain damage after being born at 24-weeks (6 months) versus the normal gestational age of 40-weeks or 9 months. (Cerebral Palsy Foundation)
There are many misconceptions about the lives of those of us who live with CP. I hope to help someone who may be living, loving, or just learning about Cerebral Palsy. The lessons I will share are based on real life experiences, and many have come in the wake of my anger and frustration. My hope is that others will feel validated and know that they aren’t alone – all of which I have felt before.
First lesson: There is freedom in fully understanding and accepting the truth that this is something I am living with.
It does not mean it is all I am; it also does not mean it’s all I want to talk about ever or that I am the best person to ask about it. It does mean that many things may look different for us and much of my life often will need to be adapted around living with Cerebral Palsy. Some examples of this in everyday life can look like:
- Choosing a booth seat over a table or bar stool at a restaurant
- Opting out of buying a drink with a to-go order to avoid the mess (especially if we’re alone!)
- Turning down an apartment because there are no first floor units available
- Asking about accessibility before agreeing to an outing or vacation
- Working full-time in an inaccessible office environment
Those are just a few ways that our lives can look different from others on a day-to-day basis.
Second lesson: Choosing not to be an advocate for other people living with your same disability will never make you a bad person.
I recently had an interesting conversation about this with another friend living with Cerebral Palsy. Being a person who has chosen to be a self advocate, and having worked in advocacy and disability-related roles for my entire professional career so far (almost five years), it was interesting to hear another side. It is so easy to grow fatigued when surrounded by disability 24/7. Living with it, there is no out. So, I completely understand those who make a conscious choice not to work in the field. Boundaries are important and should exist in every area of our lives. With boundaries and choices the guilt will follow. Choosing not to professionally pursue disability/advocacy or anything of that nature, is an amazing opportunity to show diversity, depth, and most importantly it teaches that just because we can doesn’t mean we have to.
Third lesson: Surround yourself with a community and others who share your diagnosis. It will help you in more ways than you realize right now.
Can I be honest? (not that I haven’t been up until this point). It took me decades to realize the importance of having friends or acquaintances that I can turn to when I feel alone in my disability. It’s possible to feel overwhelmed by symptoms that may come over time. For example: I had a friend (a little older than me who is also living with CP) encourage me to try a muscle relaxer. Because of my severe anxiety, I do not like taking medication – not because there is anything wrong with it. There absolutely is not but, because I am so worried about long term effects that at times I lose sight of the fact that medication is sometimes needed to alleviate unnecessary pain and discomfort.
Others with cerebral palsy may know that muscle relaxers (flexeril, cyclobenzaprine, or others) should be a part of our daily regime. Some, like me, opt out of taking them. Until my friend shared her experience with me. This was eye opening, and showed me that not only was I battling internalized ableism, I was choosing to make life harder than it needed to be. Upon realizing this, I called my doctor and requested a script for muscle relaxers which I have gladly begun to take when I need them– and my body thanks me.
If you are in search of a community here are some ways you can find one:
- Safely search for closed Facebook groups, listservs, or discords to join – like, Club Capable or the Diversability Facebook Group
- Ask your physician or nurse if the facility hosts a support group. If not, start one!
- If you attend any form of therapy, ask if there is a way to be connected with others
- If you are comfortable doing so, share your experience on social media and let your followers know you are open to sharing more with those living with the same diagnosis
If it helps, I successfully did option one and four. All of which are still happening!
I have learned so many lessons after fully accepting what my life is today. Some came later in life, but regardless of when, I have always allowed myself to learn from them. Sometimes I learn things about myself, other times I learn things about others. My biggest, most prominent, and the lesson that continues to show up for me is help does not equate to weakness. Help is just that. Help can lead to so many things for us (and for others!). Help can mean recognizing that medication is necessary to relieve pain or discomfort temporarily and as long as it’s done safely, it’s okay. Help most importantly makes space for education, which ultimately leads to understanding which we all want and sometimes need.
Want to learn more about Cerebral Palsy? Check out some of my favorite resources/accounts:
- The Cerebral Palsy Foundation: https://yourcpf.org
- ADAPT Community Network: https://adaptcommunitynetwork.org
- Keah Brown - Creator, Writer, Advocate with CP: www.instagram.com/keah_maria
- Caroline and Briella Naif - Mom & Daughter Duo, sharing lifestyle, therapy, and more. Briella lives with CP: www.instagram.com/briellaandme
- Steph Hammerman (Steph The Hammer), Crossfit trainer, advocate with CP & owner of Stay Driven Fitness: www.instagram.com/stephthehammer
- Joseph Bird, Creator, advocate with CP: www.instagram.com/cptruths
- Imani Barbarin, Creator, Advocate with CP: www.twitter.com/imani_barbarin
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There are many misconceptions about the lives of those of us who live with CP. I hope to help someone who may be living, loving, or just learning about Cerebral Palsy.
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