reflecting

Suddenly he found himself speeding along an unfamiliar country highway, and as he looked back over his shoulder neither the tollbooth nor his room nor even the house was anywhere in sight. What had started as make-believe was now very real. ‘What a strange thing to have happen,’ he thought (just as you must be thinking right now). ‘This game is much more serious than I thought, for here I am riding on a road I’ve never seen, going to a place I’ve never heard of, and all because of a tollbooth which came from nowhere. I’m certainly glad that it’s a nice day for a trip,’ he concluded hopefully, for, at the moment, this was the one thing he definitely knew. The sun sparkled, the sky was clear, and all the colors he saw seemed to be richer and brighter than he could ever remember.” – Norton Juster, The Phantom Tollbooth

Intentions… resolutions… traditions… new year’s.

Anyone that remembers the experience of childhood in the 1980s likely remembers visits to their neighborhood video rental store. They might remember associated excitement (and frustration) that came with selecting a limited number of movies for a limited period of time. Or the joy of watching a movie multiple times before returning it so that you could better remember your new favorite while you awaited the next time it might be available – and the seemingly eternal agony of waiting for that new favorite tape to rewind.

During the past few months, I have found myself noticing that recovery feels like the VHS tape of my experience with MS has been slowly rewinding. As my body works to recover, it revisits every bit of damage wreaked slowly over the course of the past 8 years (though let’s be honest – my symptoms started well before diagnosis, at least 20 years ago). In some cases, my body remembers that it can function relatively well without the burdens of an overactive immune system and associated inflammation. In other instances, my mind gets tripped up, looking to replay what it remembers… and then recognizes that part of my tape was erased. And anytime I am overworked or stressed, the old damage of my disease kicks into action, usually thwarting any progress, at least temporarily.

My HSCT Warrior family knows this to be the roller coaster of recovery. More extreme than any balancing act or thrill ride, this roller coaster is unlike anything Zoltar might imagine. Interestingly, I can witness the roller coaster any time my physical therapists chart the past 14 months of visits. Manifested in my physical ability – suddenly present today and maybe gone tomorrow – influenced by the weather (esp. extremes of barometric pressure), amount of rest and vitamins or amino acids, diet, and hormones (or lack thereof as my thyroid has been completely wrecked).

With all the transformation that occurs on the other side of HSCT, it makes sense that one would get caught up with all of the new-found (re)ability. Shedding the horrors of wondering what each new day might bring in the context of declining… trading them for the awe in noticing what each new day brings in the context of regaining ability. If not completely absorbed by the minutia – and all the things once taken for granted – it is challenging to sort, make sense, or keep track of everything that has changed, or even know for sure that it has (or hasn’t) in fact changed. What used to be a routine part of the day, slowly shifted as the ability (e.g. balancing on one foot, dancing, running) slipped away. It was hard to let go until it was really truly gone… difficult to accept, adjust, and forget. So when suddenly something (anything) seems that it might be possible (again), it is hard to find time for what isn’t part of trying to make it happen.

Despite my hopes for what might be, life goes on. The sun will rise and set. The tides will ebb and flow. There is work to be endured and play to be enjoyed. While it sometimes takes something significant as HSCT to open one’s mind to the possibilities of life and truly living, sometimes the opportunity for transformation lies in something as insignificant as a new year’s resolution.

Cheers to living in the moment and making space for resolve!

For what it’s worth: it’s never too late or, in my case, too early to be whoever you want to be. There’s no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you’re proud of. If you find that you’re not, I hope you have the strength to start all over again.” ― F. Scott Fitzgerald, The Curious Case of Benjamin Button 

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