31 Lessons Learned Living with Cerebral Palsy

31 Lessons Learned Living with Cerebral Palsy

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Living with cerebral palsy (CP) proves quite a learning experience. Lessons learned emerging from physical challenges the disability causes. Not to mention the emotional strife the condition may trigger. 

Unguided, the above turbulence could become defeating. To prevent this and instead preserve CP’s educational role, I decided to share 31 lessons I learned thanks to my cerebral palsy. Originally, I posted these to Instagram in 2021. Sharing the lessons learned one a day throughout March, a month recognized in the United States of America (USA) as National Developmental Disabilities/Cerebral Palsy Awareness Month.  

Please note, there exists no order to the list. Depending on your own experiences, certain lessons learned should rank higher than others. With that said, I present to you 31 lessons I learned living with CP.

31 Lessons Learned Living with CP

1. Accomplishments begin when you stop asking “What” and instead ask “How.”

Back in 2011 I read a memoir, Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy by John W. Quinn. The book left me wanting to challenge myself physically. An idea came to me to complete a marathon. Upon learning a marathon meant walking 26.2 miles I quickly changed my ambition and set a goal to complete a half marathon. Figuring, cerebral palsy would make a full marathon an “unreasonable” feat for me.

Yet fast forward to 2017 and I found myself crossing the finish line at the Towpath Marathon. What happened? I stopped looking at the what, my cerebral palsy, and focused on the how. To do that I needed to identify the challenges CP created for me and determine how to address those. For instance, keeping my balance while growing more fatigued. To counter that, I decided to use my cane to complete the marathon.

2. When obstacles emerge, improvise, adapt and overcome!

Credit for this lesson learned goes to Tim Wambach and Mike Berkson who spent years advocating for the disability community, performing their stage show Handicap This. Improvise, adapt, and overcome essentially became their motto. Whether a broken elevator, somebody’s unfair assumptions about you, or another unexpected obstacle, challenges will emerge in life. Rather than cowering to these challenges, Mike and Tim encouraged audiences across the USA to improvise, adapt, and overcome!

Once again, I could turn to my marathon experiences to provide a personal example. I could have easily used time as a reason I could not do a marathon. Even with the early start time the Towpath Marathon offered, I doubted I would finish the 26.2 miles before the race’s official 2pm close. Therefore, I improvised by reaching out to the race organizers. Set forth to adapt by inquiring about possibly even starting earlier. An effort I made to overcome the time barrier and become a marathoner.   

3. Life with cerebral palsy gets easier when you can share your experiences with a community who relates.

Already mentioning John W. Quinn and the guys from Handicap This feels fitting as back in December 2013 I had the honor to co-find a community with them, the live Twitter chat #CPChatNow. In the decade since, the platform changed names from Twitter to X. Nonetheless #CPChatNow continues to happen every Wednesday, starting at 8pm ET.

Through #CPChatNow I learned life gets easier when you can share your experiences with a community who can relate. With certain issues only others with cerebral palsy could truly empathize. Albeit understanding a fear of escalators, the loneliness CP may leave you feeling, or hearing the reassuring words “I’ve been there, and I can say life gets better,” finding a community to confide in makes a genuine difference. If looking for such a community, I hope you will consider #CPChatNow. However, if you do not want to deal with X, look for cerebral palsy communities on your preferred social media platform.

4. Comparing yourself to others is unfair to you. Just strive to be better than you were yesterday.

Earlier I talked about half marathons and marathons. Getting to the point where I could walk 13.1 or 26.2 miles began with conquering much shorter distances, like 5Ks (3.1 miles). Said conquering required both physical preparation and mentally sharpening my mindset. Learning to focus on bettering myself rather than comparing myself to others.

My first 5K experience, Lake View Cemetery’s 2015 Run Through History event, embodies this lesson well. After finishing dead last, temptation to feel defeated emerged. Thankfully event volunteers, my younger brother who accompanied me on the course, and my following online rallied around me with encouragement. In the moment I may have dismissed the encouraging words, but afterwards I realized comparing myself to other participants was unfair to me. No one else on the course faced the challenges I face in life. Thus, I should simply focus on me and being better than I was yesterday.

5. Run, walk, roll, limp. However you move, MOVE!

You may notice when I talk about races, I use the word “complete.” Most people seem to use the word “run.” Early in my racing days I felt compelled to correct people and say, “Well, I walk.” Technically though, you could call my walk a limp. Here enters the valuable life lesson I learned. Run, walk, roll, limp, however you move, MOVE!

How you move remains secondary to the fact you are moving, living an active life. Seeking to encourage others to live active lives, I even put the message on a shirt!

Wearing my pink "Run, walk, roll, limp. However you move, MOVE!" shirt at the Fight for Fording 5K.

6. The difference between cool and uncool exists within your perspective.

During my freshman year of high school, I remember standing outside by the parking lot waiting for my ride home. I left a period before everyone else because I was continuing to recover from major back surgery I had over the summer. Due to complications from the surgery, I also found myself recovering from temporary paralysis in my right leg.

Anyway, as I waited for my ride I suddenly heard, “Hey Zach!” Looking up, I saw my classmate Justin hanging out a second story window. “It’s cool you get to leave early,” Justin commented. Meanwhile I found the accommodation anything but cool. Leaving early made me feel different when at the time all I wanted was to blend in and be like everyone else. Little did I realize most of my peers would have loved to leave after 10th period. A fact that goes to show the difference between cool and uncool exists within your perspective.

7. One way or another we are all different. If everyone is different, what does that make “normal?” A myth!

Thinking back to the years where I desired to blend in and be “normal” makes me laugh. The humor stems from the fact I am adamant about the opposite now. I frequently put the term “normal” in quotes to demonstrate my belief “normal” does not actually exist.

In one way or another everyone has something different about themselves. Said difference could manifest through a disability, family makeup, financial history, sexual orientation, etcetera. Realizing everyone is different leads to the question, “What does that make ‘normal’?” In my opinion, at best “normal” is a myth. At worst, “normal” is the most harmful misconception impacting self-esteem.       

8. Asking for help shows self-awareness, not weakness.

Another misconception you will likely come across living with cerebral palsy equates asking for help with weakness. Help such as asking a friend to carry a drink for you or give you a hand to go up or down some stairs without a rail. Rather than weakness, the ask shows a trait more people should possess, self-awareness.

So, think about asking for help as modeling self-awareness to others. Plus, you will likely enjoy a baseball game more asking your friend to carry your beer to your seat as opposed to wearing half your $10 beer because you worried about appearing weak. Especially if the clouds block the sun from drying you off.      

9. Strength develops from consistency and persistence.

Admittedly, becoming comfortable asking for help will take time. Yet that applies to any strength, albeit self-awareness, physical strength, or what not. Bringing us to the next life lesson I wish to share. Strength develops from consistency and persistence.

During my marathon training I experienced moments where I stepped, stumbled, and lost my balance. Falls stopped occurring as much though, as I started to catch myself more. An accomplishment I credit to strengthening my core. I enhanced my core by doing a set of reverse crunches every day. At one point I only did reverse crunches on days I did a full exercise workout. While helpful, I noticed an even greater improvement once I started doing the reverse crunches daily. That every day consistency added up and made me sturdier on my feet.    

10.  Learn to laugh. Cracking a joke can turn a potentially awkward situation into a humorous memory.

One tip which helped me achieve my marathon goal came from the previously mentioned Tim Wambach. He advised me, “Don’t forget to smile.” He explained, “As silly as this might sound, a smile will help you endure when the inevitable difficulties arrive.” Advice comparable to a lesson I learned growing up. Learn to laugh. Cracking a joke can turn a potentially awkward situation into a humorous memory.

A particular moment from my college years comes to my mind. Walking into the college’s dining hall I slipped on a wet spot on the floor. The slip threw my already compromised balance off, leading me to fall. Quite the potential awkward or embarrassing situation. However, before anyone could laugh at me or make me feel bad, I shouted “Dry campus my a$$!” using a play on words to cause others to erupt in a different laughter. Friends and I still fondly recall that moment.    

11. Control what you can control.

Choosing to make a joke about my fall in the dining hall also demonstrates this next lesson on my “31 Lessons Learned Living with Cerebral Palsy” list. Control what you can control. Falling literally left me losing control over my balance. While too late to stop my fall, I still possessed control over how I responded.

Meanwhile, on a day-to-day basis control what you can control can entail taking specific actions. For instance, due to how I walk I get calluses on my feet. Those calluses remained one reason I initially dismissed completing a full marathon as “unreasonable.” Ultimately, I walk how I walk. I cannot control that. Nonetheless, I could control how I care for my feet. Adopting a regular foot care routine which included a pumice stone to shave down my calluses aided me in neutralizing the callus issue.

12. Come prepared. Preparation helps to neutralize obstacles.

Alongside controlling what you can control, preparation goes a long way towards neutralizing obstacles. If you know what to expect, you can take the necessary actions to get prepared. Although, sometimes knowing what to expect comes from unprepared experiences.

As I previously mentioned, I arranged an early, early start time for completing the Towpath Marathon, which I completed in both 2017 and 2018. Starting in the 5:00am hour meant starting in complete darkness. Thankfully, my marathon partner James had a small flashlight in his truck he ran back and grabbed for 2017. Learning from that experience, in 2018 I came better prepared with a headlight I could attach to my hat. Such preparation remained one reason why I improved my finish time so drastically from 2017 to 2018 (finishing an hour and a half better). 

13. In your world, you decide.

Before delving into this next life lesson, I must confess. I borrowed the following wisdom from legendary artist Bob Ross. See, I enjoy taking celebrities and characters from pop culture like Bob Ross or Saved By the Bell’s Zack Morris and envisioning scenarios where said person has cerebral palsy. Visions I bring to life through impersonation. For Bob Ross, I imagined he would use art as a metaphor to instruct others on how to make their life a masterpiece.

Bob Ross’s relaxed demeanor offers opportunity for optimism. You could add a dab of humor to turn a fall into a “happy accident,” as I did with my dining hall fall. Ultimately, Ross gives you power with his re-occurring comment, “In your world, you decide.” You could let frustration lead you to doom and gloom. Or, you could take a deep breath. Let go and echo Bob Ross by softly saying, “Whatever, whatever.” Then decide to find a way to make whatever you are going through a positive.       

14. One small task completed regularly gradually leads to a big impact.

Sure, making the decision to stay positive proves incredibly challenging at times. You will need to minute by minute, hour by hour focus on altering negative self-talk. The same principle applies to any ambitious and potentially overwhelming activity. Enter the life lesson, one small task completed regularly gradually leads to a big impact.

Writing and publishing a book offers a perfect example. In my time as a cerebral palsy advocate, I spoke to others with CP who wish to share their story by writing a book. One small task, like writing a certain number of words or writing for a set amount of time, done daily, makes said ambitious endeavor feel achievable. I would know, as I am an author with two memoirs to my name. My first, Off Balanced, details my emotional journey from embarrassment over having CP to embracing the disability as a part of who I am. The second, Slow and Cerebral, explores accomplishing the “unreasonable.” For me, that meant not letting my CP stop me from becoming a marathoner. I needed two years to write, edit, and publish Slow and Cerebral. The regular work gradually led to multiple five-star reviews and rewarding reader feedback. What could you do regularly which would benefit you and your goals?       

15. Get creative! Creativity stands a powerful problem-solving tool.

At first glance cerebral palsy may seem limiting, creating challenges. Rather than letting those challenges discourage you, use them to initiate one more challenge. To get creative! Creativity stands a powerful problem-solving tool.

As you probably gathered by now, CP creates many challenges for me to walk. To safely get from point A to point B and avoid injury takes constant concentration. Instead of seeing this constant concentration as a burden, I turned to my creativity. Reimagining my marathon training sessions not as just walks requiring continual focus, but an obstacle course similar to the television show American Ninja Warrior. In my head I become an athlete on a show called Cerebral Palsy Ninja Warrior. By transforming the mundane need to concentrate into an obstacle course, I create my own fun out on the sidewalks.   

16. Treat people kindly. You never know how much the smallest interaction can mean.

Way before becoming a marathoner and publishing Slow and Cerebral I released my debut memoir Off Balanced. Prior to publishing, I reached out to different classmates to seek permission to mention their names. A task made possible by social media.  

Upon receiving a message from me, I am certain at least a classmate or two reacted by thinking, “I forgot about that. I’m surprised Zach remembered.” I am talking about the smallest interactions too. Small talk before class started, where my peer went above the general polite conversation of asking, “How was your weekend?” by following up asking, “What did you do?” Such a seemingly insignificant conversation mattered to me because I lacked much social interaction. CP leaving me rather shy in high school. Enter the life lesson to treat people kindly. You never know how much the smallest interaction can mean. 

17. Being different makes you standout, not stick out. When you standout, you excel.

One reason for my shyness goes back to me feeling embarrassed about my CP. As previously mentioned, at the time I just wanted to blend in. Instead, by making me walk with an awkward gait and creating the need for additional accommodations in school CP left me sticking out. Reflecting back however, I realized the power behind rewording.

In a speech to students at Wickliffe Middle School, I challenged them not to see their differences as cause for sticking out, but rather a trait which makes them “standout.” As I explained to the youngsters, when you standout you excel. For me, focusing my blog around CP and writing books about my experiences with cerebral palsy leaves me as a standout blogger and author. Praise I am not showering myself with, but holds merit based on the recognition my blog has received and the feedback readers continue to give my books.   

18. Success looks different to different people. Define what success looks like to you.

One person pivotal to getting me to standout with my cerebral palsy was my friend James. Heck, James came up with my “CP Vigilante” moniker. To risk sounding dramatic, I credit James for a life-changing moment. Early in his YouTube series, #IBBTop3, James asked me to come on and give my top three keys to success. This inspired a powerful brainstorming session where I realized my first key. Success looks different to different people. Define what success looks like to you.

By defining what success looks like to you, you avoid losing yourself in other people’s idea of what success is. To illustrate this point in my #IBBTop3 I discussed my first 5Ks. Initially feeling tempted to measure success by comparing how I finished to other people. Positioning myself against participants without CP. Soon though, I learned to define success by comparing my performances to my past performances. Putting myself on an equal playing field, where I could elevate and better myself.   

19. Share your concerns. Conversation could generate new ideas.

If some concerns keep you from pursuing whatever you decide to define as success, speak up! Share your concerns. Conversation could generate new ideas.

Throughout today’s post I continuously refer to my marathon training to illustrate the life lessons I learned living with CP. Focusing on the physical aspects and mindset involved. In addition to those elements, conversations with experienced runners and marathoners played a crucial role. Through these conversations I learned about items like hydration belts and dri-fit socks. Items helpful in my marathon pursuit, but I would not know about if I did not first start a conversation.     

20. Hiding within life’s negatives, you will find some positive. The key to finding said positive remains adjusting your perspective.

Earlier I mentioned the temporary paralysis I had to recover from due to complications after my back surgery at 14 years old. A recovery which extended two-plus long years, requiring me to learn to walk again, undergo intense therapy to rehab, endure emotional strife, and much more. Basically, you could call the experience a negative one.

Nevertheless, hiding within life’s negatives, you will find some positive. The key to finding said positive remains adjusting your perspective. Prior to the paralyzing experience, I found myself focused on what I lacked in life. The recovery process taught me to change my perspective. I grew grateful. Gaining gratitude for everything I once took for granted, like walking unaided and the ability to ascend and descend stairs, even if I need a handrail. Like in the above instance, finding the positive in life’s negatives can take time. Be patient and believe you will eventually discover the perspective to find the positive.       

21. Social media can strengthen your support system. That starts with finding the right chat or group for you.

Already in life lesson number three I mentioned how community can make living with cerebral palsy easier. Community you can connect with on social media. Regularly participating in an X chat like #CPChatNow or a Facebook group for those with CP will gradually turn strangers you met online into vital pillars in your support system.

Such growth almost becomes inevitable when you talk to someone week after week, month after month, and year after year. Bonds form as you relate to each other’s experiences with CP. Then evolve as friendship grows and you become there for one another through difficult times, whether breakups, sickness, or the loss of a loved one.

22. Maintenance deserves recognition.

Living my best life possible with cerebral palsy entails regular exercise and stretching. Exercising at least once a week and stretching multiple times during the week. Self-care for my physical wellbeing allows me to move at my best and manage my tight muscles so I can concentrate mentally on tasks.

One day I recall looking at my to-do list and thinking, “I’ll procrastinate and exercise.” Thankfully, I recognized the self-sabotaging thought and had the awareness to realize, exercise is not procrastination but maintenance for my mind and body. Ultimately, maintenance deserves recognition. Make sure to celebrate the activities you need for maintenance.     

23. Life is a team sport. You achieve more when you can work together with others.

Achievements in life, even individual ones like becoming a marathoner or writing and publishing a book, come to fruition from a team effort. In a way life is a team sport. You achieve more when you can work together with others.

A lesson already illustrated multiple times in this post. The conversations with experienced runners and marathoners which helped prepare me to become a marathoner myself. My friend James who encouraged me to standout, even coming up with my CP Vigilante moniker. Heck, the exercises I reference in the previous life lesson are routines I adopted from exercises my childhood physical therapist had me do. Without her giving me a foundation to build off, I am not where I am today.       

24. The most powerful opinion about you is your own.

Too often people tend to focus on what other people think. Doing so overlooks, or worse compromises the most powerful opinion that exists about you. Your own opinion! How you think about yourself greatly impacts the life you live.

For example, cerebral palsy affects my fine motor skills. Making a routine task like pinning my BIB number for a race to my shirt extra challenging. For my first races, I ended up asking the friend with me for help. My attitude towards the challenge dictated the outcome, I cannot. Then I signed up for a 5K I would complete alone, leaving me no familiar face to ask for help. Therefore, I had to rise to the challenge. As opposed to fixating on the opinion, “I cannot,” I believed I could do this. Summoning determination, I arrived early to the event to give myself extra time and intensely focused on getting each safety pin through first the BIB holes and then my shirt’s fabric. Since then, I have done dozens of races without needing to ask for help fastening my BIBs to my shirts. All because I first donned the belief or opinion I could.

25. Life becomes more manageable when you set priorities.

A huge adjustment to living with CP occurs upon the transition from childhood to adulthood. Support and resources feel like they disappear because so much attention around CP focuses on children. Oddly enough though, this disappearance engrained in me a valuable life lesson. Life becomes more manageable when you set priorities.

Said lesson I learned the hard way, through a physical toll. As a child I had physical therapy (PT) at least weekly. Once in adulthood though, my physical care solely became my responsibility. I wavered back and forth on exercising regularly. At one point even going a long 112 days without any PT type exercise. Physically, I ached. Mentally, my tight muscles interfered with my ability to concentrate. Fueling a cycle of constant frustration. Nevertheless, the experience emphasized to me the importance behind setting priorities. With my top priority needing to be exercise. Everything else falls into place afterwards.

26. You can wait for opportunity or make your own.   

Obviously, exercising takes time. Adding to a separate challenge many people face, time management. Whether living with cerebral palsy, another disability, or completely able, time tends to move fast. I bet everyone could relate to wanting a few more hours in the day. Hours you could use on that task you want or know you should pursue.

Well, you could hope and wait for such an opportunity to come OR make your own opportunity. That might look like waking up fifteen minutes early to stretch. Or, reaching out to event organizers to inquire about any potential accommodations. Much like I did with Canalway Partners when I reached out about starting the Towpath Marathon early.     

I made my own opportunity to complete a marathon by asking Canalway Partners about starting early.

27. A “small” matter to you could mean a lot more to someone else. Stay mindful.

Beyond living with cerebral palsy, I consider myself a CP advocate. I mean the header on my website does read, “Online home for author, public speaker, and all around cerebral palsy advocate.” Attempting to advocate for an entire group, especially one where severity varies immensely, requires staying mindful. Remembering a “small” matter to you could mean a lot more to someone else.

Such a wide range in experiences means people will respond to the same situation differently. By dismissing someone’s situation as a “small” matter, you dismiss their lived experiences. Rather, work to keep their perspective in mind.   

28. Every step in the process matters. Miss one and you will fall short of the finish line.

Every step, whether a literal one on the marathon course or metaphorical one as in an exercise session or interaction with others, matters. These steps build momentum, enabling progress. Missing one step will leave you finishing short of the finish line. Once again, either a literal or metaphorical finish line.

Take the importance of my physical therapy exercises in my marathon training. Those exercise sessions helped keep my ankle loose, hamstrings stretched, leg range of motion in good shape, and balance sturdy. Although not actual distance walking or running, all these traits remained essential to building the endurance to walk mile after mile for 26.2 miles. To re-emphasize, every step in the process matters!  

29. Patience goes far when interacting with others.

Surely, living with CP or having a loved one with CP, you experienced that moment. A stranger or even friend makes a comment meant as a compliment or takes an action intending to provide help. However, the comment or action comes across as condescending, reinforces disability stereotypes, or proves counterproductive. Temptation to snap at the individual might surface. Take a deep breath and practice patience. Patience goes far when interacting with others.

By practicing patience, you create opportunity for discussion and learning. During the Towpath Marathon in 2017 I fell twice. Once at mile three and once at mile fifteen. Reacting to my fall at mile three, my friend James burst into action. Preparing to grab me under my arms and pick me up off the ground. Admittedly, I failed at applying my own lesson. Instead, shouting “NO!” The environment became a little tense once back on my feet and we were moving again. Eventually, we talked out the situation. James defending himself, saying, “I was just trying to help,” and me explaining how I need to basically perform a self-check when I fall to check for any injuries. The conversation proved worthwhile as when I fell at mile fifteen, James did not spring into action. He calmly asked, “What can I do to help?”   

30.  Stumbles and falls are also learning experiences.

Certainly, you could say my falls doing the 2017 Towpath Marathon ended up a learning experience for James. However, stumbles and falls are also learning experiences for yourself. I stumbled and/or fell multiple times during my marathon training. Since then, too!

Those skirmishes with gravity typically come with a lesson though. The lesson could be as simple as “Slow down and pay attention to the surrounding area.” Or something more profound like, “One fall can change everything and ruin plans. Focus in on this moment.”

31. Don’t blend in. Blend out!

Whether my blog posts here or my YouTube videos, I spent years ending my content with this life lesson. Don’t blend in. Blend out! Blending in, like I once desired, keeps you from fulfilling your potential. However, blending out leads to a more exciting life. More impactful as well!

Choosing to share my experiences living with cerebral palsy has enabled me to live out my life mission to make a positive difference on the lives of others. Albeit parents writing me to tell me Off Balanced made them cry because they saw their child with CP in my words or someone with CP connecting with me to express how I helped provide them encouragement via my advocacy efforts, I know I helped other people. All because I chose to blend out. You or your loved one can too. You do not need to start a community like #CPChatNow or publish a book to do so either. Just live unapologetically you.

By doing so, you will not blend in. You will blend out!


P.S. If you enjoyed what I shared today, you will likely enjoy my memoirs Off Balanced and Slow and Cerebral. Check those out over on Amazon!

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One response on “31 Lessons Learned Living with Cerebral Palsy

  1. Nurse

    Hi, Zachary!

    Thank you for such a motivational blog post. You included so many positive ideas and the ones that stuck out to me were to focus on what you’re in control of and to celebrate what you do to maintain your life.

    I hope you do a follow up post and give us more tips like these.

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