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When Bucket-List Dreams Come True: Part One

If you’ve ever had that ONE thing on your calendar to look forward to - to count down toward that you’ve been anticipating for months - you’ll know the type of excitement I’m about to describe!

This time last year, I connected with a lovely woman from New York (NY) who was on her own journey toward SDR surgery in St. Louis. We got in touch through a Facebook group for adults who have had, or are seriously considering the surgery.

Liz and I were close in age, and - as I would soon find out - although our journeys with CP were different as children, our lived experiences as adults with spasticity were strikingly similar. It didn’t take long before a friendship was born. I couldn’t help but feel like I had somehow known this woman my entire life, even if we had only just “met” now in our 30’s. I knew that I had found a kindred spirit in NY. Tucked away in the back of my mind was the glimmer of hope that maybe one day, I’d get to meet her in person.

So when Liz sent a message on New Years’ eve mentioning that she might just be making a trip to Canada this spring, I couldn’t have been more excited! There was an opportunity for her to work with Mike Poole for a week, as he was hosting an intensive at Variety Village in Scarborough. It had long been one of her "bucket list" items to work with him, and she was eager to make it happen!

“Intensives” provide an opportunity for post-SDR individuals to work on exercise and strength training activities specific to their current abilities and future goals. They require a lot of HARD work and are not for the faint of heart, but they produce results that standard physiotherapy often cannot. I had the opportunity to meet Mike when he was here running his first Canadian course back in October, and so I knew fully that this would be a phenomenal experience for her.

Flash forward to last week, when I found myself waiting happily at the airport for her to arrive. There were so many points that morning where I had to pinch myself that this was actually happening. Not just because we were finally getting the chance to meet in real life, but also because Mother Nature had thrown a party two days before, blanketing the GTA in a winter ice storm that essentially shut down all of Central and Southern Ontario. And of course, the party was still going strong on the morning of her flight. I honestly can’t recall the last time we had a storm like that (let alone in mid-April!). At every turn it seemed next to impossible that our dream trip would work out. Yet….somehow, it did. (Liz’s flight was the only one heading to Toronto from the LaGuardia airport that morning that didn’t get cancelled!)

I can’t put into words what it was like when I finally saw Liz, smiling from ear to ear as she made her way forward! Simply, it was a “full-circle”, bucket-list moment I won’t ever forget. Part of why it was such an emotional experience for me too, was because I knew fully just how big this was for her.

Before SDR, Liz hadn’t traveled outside of the USA - largely because of how hard it had become to cope with the pain and declining function she was experiencing due to spasticity as an adult - that I know all too well. And now, just 9 months after her surgery, she had traveled - in one of the worst Canadian winter storms - and she had done it all on her own! For those who travel effortlessly and often, it might not seem like a big deal. But for Liz, and adults with CP who have to fight to hang onto our independence and physical abilities - it was everything.

As we settled in that night, I was filled with such gratitude. I was thankful for my cousin who drove an hour out of his way bright and early on Saturday to get me for the first leg of my trip, and grateful also to a dear friend who drove me to the airport in that insane storm the next morning, helping me to get to Liz. Just 5 years ago, I could’ve managed to travel out of town, to Scarborough to meet her by myself without giving it a second thought. But so much has changed for me physically since then because of spasticity, and without their help this wouldn’t have been possible.

In the days that followed, I simply soaked up every moment that we had together. I was filled with joy at the wonder of it all.

Just a year ago I was blessed to connect with this friend who understood me in ways no one else could...and now….here we were in person sharing laughs, hugs, tears, meals and memories together, just as it was meant to be. Our visit on its own would have been more than enough for me to last a lifetime...but it only got better from there!

Over the course of the week with Mike, I saw Liz experience so many break-through moments. He was teaching her how to move and walk and take control of her body in new ways that she had never been able to before SDR - and it was amazing to see. The 9 months of work she had put into her rehab up until this point was obvious. With that solid foundation in place, Mike then helped her to elevate her abilities, and to take her belief in herself to the next level. It was a privilege to witness, and a huge motivator for me as I look ahead to life after my SDR surgery, too!

It was also so refreshing to spend that week at Variety Village. The facility is one of the top in the world for inclusive athletics. Everywhere we went, there were adults of all abilities working out side by side. It was wonderful to be active in a space where we could comfortably blend in with everyone there - rather than feel like outliers among an 'all-able-bodied crowd' which is otherwise our norm.

It was insightful to observe Liz’s intensive program and Mike’s approach to SDR rehab. It was meaningful to see her train and be treated like an athlete rather than a fragile patient. It was re-affirming to me to see the power of SDR surgery and the transformation it provides in person. It was amazing to witness the undeniable difference this surgery has made for Liz not just in the gym where she can finally now push her body in new and exciting ways - but in every other aspect of her life too, where she can now truly live empowered, pain-free, and without the limits of spasticity holding her back. I’ve thought endlessly about how SDR surgery is “life-changing” because I've done my homework to know that it is - but seeing that reality in person was surreal.

During one of the sessions - after I had watched Liz be put through her paces - Mike turned to me with a grin and asked if I was now more (or less!) eager to pursue SDR surgery and the rehab like his that follows. With all that I had seen and experienced during our time together, I knew immediately what my answer was:

“It makes me impatient for my SDR”, I said with an exasperated but cheerful laugh. “I can’t wait to have the opportunity to do that!”

And with a hopeful heart I smiled to myself, knowing that somehow, soon...I will.

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