KEEPING IT REAL: Liz’s Mobility Story

KEEPING IT REAL: Liz’s Mobility Story

By Liz Venendaal*

Looking back it’s hard not to wonder what could have been different. Should I have done more stretching? Did all those surgeries do more harm than good?  If I just focused more on my posture or not dragging my feet…what would my mobility be like today? 

You see, as far as I knew, my cerebral palsy was not going to get worse. CP is defined as a “non-progressive condition”, which brought both my parents and I a great deal of comfort as I was growing up. We all clung to that truth. It is what it is. Right? What none of us realized then was the degree of function changes that I would experience over the course of my life.

In those early years I didn't understand what the diagnosis of cerebral palsy really meant for me. No one did. I had no idea that the lack of “progression” is brain specific, and has little to do with my body mechanics, mobility and pain. 

Throughout my childhood I had graduated from using a walker to holding someone's hand, or my environment for stability. It wasn’t until I was 12 years old that I was forced to reconcile with the fact that my abilities within the scope of my CP were ever changing. 

There was one particular shopping trip with my mother and two siblings that remains burned in my mind. I don’t remember where we were but I can still clearly remember walking around that store and feeling the absolute agony of my aching muscles. I remember wondering why, as hard as it always was, it felt harder. That frustration continued to build, quickly clouding what was supposed to be a fun family outing. 

I clearly recall reaching the point where as hard as I tried, I could not take another step. My mom: cool, calm and collected as always, told me that it was ok and helped me sit on the ground. She and my siblings continued to look at clothes on the nearby rack and I watched from the floor. It wasn’t long before I needed something to lean on to stay seated and I slowly slid into the clothing rack to find support at its center. 

As I slid myself back it felt like those clothes were swallowing me whole and in that moment, I felt relief. My body, heart, and mind needed support and I found comfort in the isolation. I felt so low, and so confused by how my legs and body, had seemingly failed me. I remember looking up, seeing my brother and sister shopping, and feeling like I was so far beneath them, both literally and in my capabilities. I was so far removed from what they could do and what I thought I could do before that day. Things had changed.

It may have been my growing body and an indication that I needed the multiple operations that would follow that coming summer, but my mobility and function were presenting challenges I hadn’t faced to that degree. My legs hurt, my muscles ached, and my balance was unreliable at best. Those were all elements of my CP that I faced before, but they were suddenly on overdrive and I have to tell you, I didn’t see it coming. 

Had I known then what I know now, I probably would have spared myself years of heartache and frustration. All I knew at the time was that I was told that my disability wasn’t going to progress. So, my natural assumption was that it must have been something that happened or didn’t. Had I known that function changes are a natural aspect of life with CP, my many questions and shoulda, coulda, wouldas (can you hear that in my NY accent?)  would have been put to rest. 

The fact is, with CP, function changes can be frequent and radical or slow and steady but they are a very real part of living with this disability. 

It took me a long time to wrap my mind around that truth bomb. For me, it required a major mental shift to let go of what I was told, and accept what is and what my life and body were showing me. The brain damage that caused my CP will not worsen. Yes! We can take that as a win. However, the many ways that my body and mobility will change has no stopping point as long as I live. 

That feels like a lot even as I write it. It’s hard but it’s real. With that knowledge is a level of clarity and renewed sense of peace. Sure, my life choices impact my health and mobility. That’s the case for everyone, after all, but the stakes feel much higher with CP. 

I have come to learn that the changes I’ve experienced were not uncommon. Most importantly, there are others with CP, over 18 million others, who have felt this struggle as well. The weight of it all feels so much lighter when I realized I was not alone. 

The 12-year-old me did not anticipate this significant function change. But with time came more awareness and I began to recognize the many factors of my life and circumstances that can and have impacted my CP and my ability to function.

As many of us with CP can attest, physical therapy is a regular part of the school schedule. I had PT at least three times a week from my early intervention days through high school. This may sound ridiculous but when I received that high school diploma, I was relieved to be done with high school and physical therapy. I checked that box, I finished growing and I could move forward. But I was so wrong.

It took time but I ultimately came to learn (the hard way) what a tremendous impact regular stretching and exercise had on my ease of movement, pain…you name it. In my early 30s I had SDR (selective dorsal rhizotomy) surgery which catapulted me back into physical therapy in order to not only qualify for the surgery but to prepare my body for the long, grueling, recovery. 

I reprioritized my health and fitness in a major way and I was seeing results. Seeing and most importantly feeling the impact of stretching and exercise, both before and after surgery was amazing. I was reaping the rewards of my hard work and my mobility, physical, and mental health were all on the upswing. 

…. And then covid hit.

I’d be lying if I told you I didn’t see that silver lining in the early days, weeks and months of the pandemic. The world took a pause and as scary as that was, it was also refreshing in a lot of ways. The shut-down put an indefinite end to my workout regime and the abundance of food delivery options served as my comfort in such an unprecedented time. 

It’s safe to say the pandemic has gone on far longer than anyone expected and the truth is, so did my own personal pandemic party. By the time gyms and physical therapy offices reopened in NY, I was so far removed from the discipline I had pre-pandemic. I had spent months indoors ordering pizza and Chinese food on a regular basis. I really enjoyed the new-found ease of having ice cream or vodka on my doorstep on a whim. Going to PT and stretching on my living room floor felt like a distant memory.

The pressure was off for so long that when my world began to reopen, my reality hit me like a ton of bricks. Those bricks slapped me in the face and must have landed on my feet because it was hard to move. So much of the strength, comfort, and ease I worked so hard to achieve in the years prior were lost. How could I let this happen?

I found myself left to face the fact that this time I knew better. It was something I did, and didn’t do. Pandemic or no pandemic, my cerebral palsy was continuing to put my mobility and function to the test and I stopped pushing back. As much as my body felt that defeat, the emotional toll felt harder to overcome.

As a professional life coach, it’s hard to admit such a huge, radical misstep. But anyone who knows me knows that I have somehow mastered the balance of being great at my job and honest about my own struggles. I don’t have it all together. But I am a huge believer in new beginnings and that is exactly what I needed.

I lost focus of my achievements and my goals. I had to admit that and being as emotional as I am, I had to feel it. I was really mad at myself and had many good, ugly cries. But as soon as I realized I hit that low, I could also see that there was nowhere else to go but up.  And that has been exactly where I have been headed ever since.

I recognize my role in my decline because in all of the control I don’t have with my cerebral palsy, there is a whole lot that I do. I made the choice to get moving again and reprioritized my health and mobility. I have to tell you — I still felt the weight of those bricks the first morning that I got up to take a walk after months of being so sedentary. It was tough and I didn’t make it far. But I did it. I was better off than I was the day before, and in the months since I realigned my healthy goals, I am all the more.

I have come to accept the fact that I will always have to push back. I will always have to be very clear and intentional about maintaining function and not letting my CP, the pandemic, or my life derail me. My greatest life lessons are often learned the hard way and this was no exception. I continue to move forward with a renewed sense of commitment for my health and a mental strength that my body will soon come to match.

*Liz's story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.