Tag: muscular dystrophy

Now What?

On By Chris AnselmoIn Uncategorized8 Comments

I took my final steps on May 11th, when I fell in my bathroom at home and had to be helped up by paramedics. To continue trying to walk was just too risky. Two months have passed since that day, and I have had a lot of time to think about what losing the ability to walk means for my life going forward.

I see my legs every day. I can still move my toes, bend my knees, and flex the flabby remnants of my calf muscles. I can still feel the pain of tense muscles, the ache of sore hips. I still get random itches on my feet that never seem to go away. My legs are still very much a part of my life, and I am thankful I still have them.

But in the task they were designed for, to get me from point A to point B, they don’t work. They are accessories, not workhorses.

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More of Me

On By Chris AnselmoIn Uncategorized2 Comments

For as long as I can remember, I have weighed somewhere between 155 and 160 pounds. I rarely checked my weight growing up, as it wasn’t a major concern. If anything, I was frail as a kid. The only reason I knew my weight was beacuse it was part of my annual physical exam.

In the last three years, however, I have slowed down considerably. I sit in my wheelchair all day and barely walk anymore. As a result, to put it nicely, there is more of me now than there was three years ago.

My body image doens’t really bother me. I am more preoccupied with my mobility than how I look. However, as one chin became two, it is undeniable that I’ve put on considerable weight. It is concerning. In the last three-plus years, I have put on 25 pounds. That is not ideal.

There are three problems with this.

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Boston

On By Chris AnselmoIn The Reluctant Traveler2 Comments

As I write this, I am back home in comfortable, quiet Connecticut. But my mind is elsewhere.

Recently, I had the opportunity to spend two weeks in Boston, my adopted home for 12 of my 32 years. To say that I was excited to visit the city for an extended period of time is an understatement. I was thrilled.

My years in Boston, from 2004-2016, were the most eventful years of my life. They formed me into who I am today.

Boston was where I went to college, worked for six years, and got my MBA.

It was where I first noticed symptoms of the muscle disease that would take over my life.

It was where I made lifelong friends and lost a dear friend.

It was where I fell many, many times.

It was where I questioned my very existence and the point of this frustrating, maddening hand I was dealt.

Most important, it was where I learned to pick up the pieces of my life and start over again.

Boston is where I grew up.

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Between Then and Now

On By Chris AnselmoIn Through My Eyes5 Comments

It’s been a while since my last book update.

I am happy to say that I am still making progress, albeit slowly. Working full-time only affords me limited energy at the end of the day to type coherent sentences, but it is progress nonetheless. In the beginning, I was keeping track of how many pages I had written. Although by now I’ve lost track, I am well over 300 at this point.

Instead of tracking page count, the way I measure my writing progress is by where I am in my story. Right now, I am in late 2012, right on the cusp of the most emotional two months of my life. January and February 2013 was a defining period that changed the trajectory of my life forever. Even now, it still elicits mixed emotions. The pain of loss. The frustration of dealing with a rapidly-weakening body. The nostalgia of living and working in Boston. The satisfaction of realizing just how much I’ve grown since that time. Continue reading “Between Then and Now” →

Back to Zero

On By Chris AnselmoIn Through My Eyes14 Comments

In the back of my mind is an internal clock, one that tracks the time that has elapsed since my last fall. Well, it doesn’t count the exact days (it’s not that good), but it knows that my last fall was on the Fourth of July 2018, a little more than six months ago. I remember that day vividly. I was in North Carolina visiting my sister, and after watching the fireworks on TV, I retired for the night. As I was about to climb into bed, my right knee bumped into the box spring, causing me to lose my balance and crumple to the floor. I was shaken up but otherwise unhurt.

To go six months without a fall, given my advanced weakness, is a miracle in itself. But I knew my good fortune wouldn’t last, that eventually the clock would reset one of these days, in sudden and violent fashion.

That day was Thursday.

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2019 Blog Topics – Welcome Your Input

On By Chris AnselmoIn Daily Musings2 Comments

Hi everyone,

I hope everyone is having a great start to 2019!

I am planning out my content calendar for the next few months and wanted to quickly reach out and ask my readers: Are there any topics you’d like me to write about this year? Anything related to my patient experience? Random subjects that have nothing to do with disability?

Let me know! I welcome your input.

At least, as long as it’s something I want to write about…

What I’m Grateful for This Thanksgiving

On By Chris AnselmoIn Through My Eyes5 Comments

Although my life is chaotic, with its share of frustrations and challenges, on the whole, I can’t complain.

It’s been a while since I’ve done a list, so rather than write a sentimental essay to commemorate Thanksgiving, I figure instead I’d rank everything that I’m thankful for this year. Why not?

Without further ado…

Things that give me joy

18. TV shows. Outside of sports, I never really watched a lot of TV as an adult. Now that I live with my parents and have the post-dinner energy level of a tranquilized sloth, I have become a fan of many shows. I don’t have Netflix, so I watch what’s on cable. Some of my favorites: Chicago PD and Fire, MacGyver, Hawaii Five-O, The Good Doctor, NCIS: New Orleans, and of course that hot new intellectual thriller, Jeopardy.

Bonus favorite show that my mom hates with a passion: The Curse of Oak Island.

Continue reading “What I’m Grateful for This Thanksgiving” →

Op-Ed in the Hartford Courant

On By Chris AnselmoIn Daily Musings8 Comments

Hello everyone! I hope you are having a great Sunday.

I wanted to quickly share an opinion piece I wrote for my hometown paper, the Hartford Courant:

http://www.courant.com/opinion/insight/hc-op-insight-anselmo-getting-up-afer-dark-times-20180710-story.html

I wrote the piece on a whim, after learning about the suicide of Anthony Bourdain, who I was a big fan of and got the chance to meet back in 2012. There is a lot of despair in the world today and I felt – I hoped – that by sharing my story, I could show others that what helped me through my struggles was not some innate desire or ability, but rather a skill that everyone has – empathy. It’s a skill worth fighting for, even in this broken world.

I hope you like it!

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First Place!

On By Chris AnselmoIn Daily Musings6 Comments

This afternoon, after waking up from a nap (what can I say, I get tired easily), I checked my email and learned that my blog post for the Clara Health writing contest won first place! I thought my entry was strong, but I never entertained the thought that I’d place, let alone win.

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As someone who rarely wins anything, outside of the occasional fantasy baseball league, winning this contest is a huge accomplishment for me. The cash prize certainly is nice, but even more important, the contest did a great job of highlighting and featuring an underutilized asset in the healthcare space – the patient experience. The contest was a great way to compile these experiences and showcase them to a larger, non-patient audience.

Here is a link with all the entries to the contest. It is well worth the read, and shows that there are a lot of talented patient writers out there whose voices deserve to be heard!

Paying It Forward

On By Chris AnselmoIn Through My Eyes1 Comment

Blogosphere,

I have some exciting news! I am happy to announce that I am raising money for an award at Northeastern University, my alma mater, called the Ralph and Theresa Anselmo Resilience Award, named after my parents. The award – which may end up being two awards when all is said and done – will be given to a sophomore, middler or junior-year student registered with Northeastern’s Disability Resource Center (DRC).

You can find a link to the GoFundMe page here. Any contribution is greatly appreciated! Even if you are unable to donate, sharing the link with your family and friends would mean the world to me.

At this point, you probably have a few questions:

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