Last Friday, I found myself scribbling down notes while listening in on a work call. Every few seconds, I would jot down an action item for follow-up, with an occasional inane doodle in between. I know what you’re thinking – it’s 2017, why am I still writing down my notes? You’ll be happy to know that I use my computer (Evernote) most of the time, it just so happens that, when I want to brainstorm ideas, write down a quick list of to do’s, or take notes passively while listening in on a conversation, nothing beats pen and paper.

Which is why this latest discovery was all the more unsettling.

As I wrote on my yellow legal pad, I noticed that it was taking a lot more effort than usual to get the pen to move on the paper. My mind may move a mile a minute, but my hand, I have come to realize, no longer can. After a few sentences, my wrist and hand muscles began to cramp up, followed by the unpleasant burning sensation brought on by fatigue. Towards the end of the call, I was capturing only the most important words, just barely enough to jog my memory later on.

When I finally put down the pen after the call, I flexed my tired hand and wrist, desperate to rid myself of the exhaustion.

Here we go again.

I’ve seen this movie play out in my life time and time again. Something that I once took for granted suddenly becomes difficult. Then, shortly thereafter, it becomes prohibitive altogether. It happened with playing basketball, running, climbing stairs, getting up from a fall, and getting out of a chair. On deck are brushing my teeth, shaving, walking, and apparently now, writing too.

None of this has been surprising, but, as you can imagine, it isn’t fun. I don’t write this looking for pity (you know that by now!), it just…is. It’s the way my disease works, and it’s a basic fact of life, like the sky is blue today or the Red Sox bullpen outside of Craig Kimbrel is a disaster.

Almost every moment, whether consciously or subconsciously, I think about the changes on the horizon. I long for stability – crave it even – but it just isn’t part of the equation. Lately, the uncertainty and constant change has ground me down into a pulp.

I knew my life would change when I graduated from business school last May, but even this has been more than I expected. It has been a test, plain and simple.

The tag line for Sidewalks and Stairwells is “The Long, Winding Journey from Ability to Disability”, and it rings true today more than ever before. Physically, I am undergoing the part of the journey that I feared – and continue to fear – the most, from life on two feet to one on four wheels. I wrote about it back in April, and all those sentiments and feelings still apply today.

The changes, however, are not just confined to my body. My family is in the process of moving out of the house that I grew up in. Although we are moving to the Connecticut shoreline – a beautiful, quiet part of the state – it still represents the closing of another chapter of my life. All the while, I still miss Boston terribly. I’m quickly approaching the one-year mark when I moved away, and to say that I’ve missed my friends and my old way of life is an understatement. I still believe that I will make it back someday. I have to believe it.

Our backyard, and the wilderness beyond.

So yeah, there’s been a lot on my mind recently. No wonder I’ve had writer’s block these last couple months! But this wouldn’t be a post from Chris (the last time I will refer to myself in the third person, promise) without mentioning the life lessons reinforced during this time.

In this life of great uncertainty, I have relied more than ever on what has gotten me this far. If you were to ask me seven or eight years ago how to deal with this disease, I’d emphatically huff and puff and say “I’m going at this alone!”, followed by you watching in dismay as my life unraveled. Nowadays, I know that when times get tough, internalizing it is the worst thing I can do.

This past year, I have looked externally for guidance and support more than ever – seeking out and trusting God more, and being more open about my situation with my parents, my friends, and my fellow 2B patients. I’ve also sought out other patient stories as blueprints for how to deal with the changes in my own life.

And you know what? It works, it really does. It doesn’t make everything perfect, but it gives me the emotional strength I need to compensate for my loss of physical strength.

To paraphrase the founder of the Hair Club for Men, I don’t just give resilience advice, I also use it. Oftentimes on this blog, I share what’s worked for me, but I am always quick to point out that I also need to use this advice every day. I am not immune to the ups and downs of life. No one is.

Over the years, I’ve accumulated many tips and tricks. Whether it’s focusing maniacally on my goals or seeking out support when I’m down, I have learned many ways to deal with this life of ever-present change.

At the same time, I am always seeking out new ways to cope. In the last few months, I have tried my hand at meditation, and it’s great! I mean, I’m not an expert at it by any stretch – again, my mind moves a mile a minute and…..oh look, a squirrel! – but it has been a major help in finding serenity deep within me that I can turn to when life threatens to spiral out of control.

Meditation is aided by nice scenery. One perk of moving is that I now have a nice, peaceful view of the forest in our backyard. My old view at home was of a busy street, but this new view is full of green grass, trees, and wildlife of every kind. I’ve seen deer, rabbits, birds, squirrels, chipmunks, even a cute-but-still-really-gross skunk.

Lately, I have been drawn to these beautiful white butterflies that land from time to time on the flowers in our garden. They are especially noticeable against the green backdrop of the woods beyond. In addition to their beauty, butterflies represent change personified. They bring meaning to the word metamorphosis.

I wasn’t able to get a picture of the butterflies. Hopefully this deer will appease you instead.

For this article, and to save myself from accidental embarrassment, I looked up the meaning of the word. The definition spoke to me, at least the one that didn’t involve immature insects:

A change of the form or nature of a thing or person into a completely different one, by natural or supernatural means.

I realize that what I’m going through is basically a metamorphosis – a radical change from my old way of life into a completely different one. To drag the metaphor out some more, I guess it means that right now I am in the cocoon phase.

If that’s the case, then I hope, when this transition is complete (then again it may never stop changing), I will emerge like a butterfly, with my own emotions, life experiences and perspectives forming my own unique and vibrant pattern. Rather than fear the changes, maybe I will learn to embrace them, and in the process build a better life for myself than I would have had without this disease.

I read that when butterflies come out of the cocoon, they are wet, tired, and unsure of how to use their new wings. Once they learn how to fly, however, life is never the same.

Now that is a blueprint worth following.


6 thoughts on “Metamorphosis

  1. Suzanne Haigh

    I am so grateful for your blog. I have been struggling with the metamorphosis that muscular dystrophy bring on and have to say you have given me a different view point on something I fight with all my might. Loosing ability is scary but I am even more afraid of loosing myself too. Just have to remember I will be an even more beautiful butterfly from these experiences.

  2. Linda Schneider

    Following you, Chris, is poetry in motion! I hope you can find a way to keep writing! It is your lifeline, I do believe… I hope when you move to Carolina shoreline that you will again have a beautiful scene from your window! Have your parents found a home for all of you, yet?

    I am sending you tender hugs and wishes for the best array of Butterflies that you have ever dreamt of, my friend! Keep us updated on your ongoing metamorphosis.

  3. Terrific musings Chris – thank you. We really need to reflect and recalibrate our focus more than most as we navigate this MD thing. You have a beautiful area around you.Take care 🙂

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