Seven Years

Monday marked the seven-year anniversary of the passing of my former coworker and dear friend, Carly Hughes. It’s hard to believe that it’s been that long. I had to double check. But it’s true. Seven years.

I was afraid that as the years passed, I would forget her. Although I may not remember exact conversations, I remember how she made me feel. She always made me laugh with her pranks and tall tales. She also knew how to get under my skin, in a way that was both effective and non-threatening. I still laugh thinking about how mad I got when I came to work one day and she had turned my desk around to face in the opposite direction.

Carly was a caring soul, one who always looked out for other people. There are many stories of her heroic dedication to her friends. Most of all, she knew how to be there for someone going through a tough time. She understood the importance of physical presence in an era when we live our lives behind our devices.

In the process of writing my book, I came across notes and old emails that helped take me back to 2011, when she joined Visible Measures and our friendship took off. By jogging my memory, these notes allowed me to live in the moment, as if it were happening all over again. I still to this day have not seen anyone drink a large Dunkin’ Donuts Iced Coffee as fast as Carly.

I still think about her often. Her passing feels like a lifetime ago, but I’m happy that the memories remain, as does her legacy. Words can’t adequately express what she’s meant to me. (I tried.)

There is a foundation named in her honor, and on the website are several stories about her that will warm your heart.

I’ve accepted that I’m never going to understand how someone so full of life could be taken from us at 24 years of age. Only God can answer that. But I’m happy to have her as a guardian angel, watching over me and giving me encouragement when I need it.

Just leave my desk alone, Carly.

 

More of Me

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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Crossroads

I was going to write an end-of-decade wrap-up last week. I was, I swear. Then I kept procrastinating, and procrastinating, and procrastinating, and next thing I know, it’s a new decade.

Oops.

I have to admit, I am not a big fan of contrived wrap-up posts. I tend to write only when inspired, which is on average about once per month. I don’t like to write just to write. But I had to at least acknowledge the conclusion of the 2010s. The decade was only about a third of my life, but for all intents and purposes, it was a lifetime.

At no point in the 2010s was I asymptomatic. It’s hard to wrap my mind around this fact, but I dealt with symptoms of my disease for the entire decade.

I can no longer remember what it was like to have full mobility, with no second thoughts about walking or running or climbing stairs. I don’t remember what it’s like to live spontaneously. So much has changed in just ten years: Continue reading “Crossroads”

Pete’s Legacy

The notification that I had been dreading for five years popped up on my phone Monday afternoon.

Pete Frates, ALS advocate who helped turn the ALS Ice Bucket Challenge into a worldwide phenomenon, had passed away.

This news did not come as a surprise. But regardless of whether or not it was expected, the news pierced my soul. It hurt. I felt like I had lost a good friend, even though I never met him.

I had followed Pete’s story ever since I first learned about the ALS Ice Bucket Challenge in the summer of 2014. Even as his physical condition deteriorated over the years, his spirit remained defiant. His perseverance through hardship was the example I needed during an incredibly difficult time in my life.

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Unsung Heroes

November was National Family Caregivers month. Which means, of course, that I waited until December to talk about it! But better late than never. It’s an important topic.

The premise of the month is to celebrate those who care for loved ones in need of daily help. The person may be aging, disabled, or some combination of the two.

It is so great that there is a month dedicated to caregivers. They are deserving of the recongition, as caregiving truly is a sacrifice of time, energy, and emotion. When you hear of someone living with a disease or disability, people often think of the person living it. But it has an impact on everyone, including friends and family. Especially family.

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Happy Thanksgiving!

Hi everyone!

I just want to wish a happy and relaxing Thanksgiving to you and your family. Unless you are in charge of the food or despise your in-laws. In that case, my condolences.

I’ve had some writer’s block recently, but figured I’d write a quick post and provide a few links and updates:

  • My travels have officially wound down for the year. In 2019, I attended conferences in Orlando, Philadelphia, Chicago, Boston and two in Washington, DC. We drove to all of them! Which ties in well with why I was in DC. In October, I spent 2 weeks in DC attending both the MDA Public Policy and Advocacy Confernce and the NORD Rare Summit. The MDA conference was all about policy, and one of the issues we discussed at length was air travel accessibility (or lack thereof). I wrote about my experience at the MDA conference here.
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Ah yes, I signed a photo release form. Fortunatley, this was a good picture!
  • Recently, I was profiled on the American Neuromuscular Foundation’s website. Also got the chance to shamelessly plug the work of my friend Monkol Lek.
  • Rather than write a new list of all that I’m thankful for, here is my list from last year. It is still relevant today, although this time I’d rank the socks and space heater higher. God. Then family and friends. Then warmth.
  • Speaking of lists, I have updated my list of Role Models, which was about a year out of date. I know there are many more to add, but I am about ready to take a nap and my short-term memory is MIA.
  • My friend and former boss Adrienne Harper founded an organization called Bundles of Joy (BOJ), in Westchester County, NY. They are doing great work! If you are looking for an organization to donate to this holiday season, BOJ provides essentials like diapers and clothing to vulnerable families in the area. So many families are in need of the basics, and just a little help can make such a difference in their lives.
  • This article about friendship really resonated with me. Certainly got me thinking about my own friends and how I can be a better friend.

 

Happy Thanksgiving, from the lurker.

(Seriously though – where are you supposed to hang up a giant photo of yourself?)

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A Weekend at the National Limb Girdle Muscular Dystrophy Conference

Three weeks ago (time flies!), I had the opportunity to attend the first-ever Limb-Girdle Muscular Dystrophy conference, which took place in Chicago over Labor Day weekend. Although everyone who attended the conference had to contend with the logistical challenges of traveling over a holiday weekend, it was well worth the frustration and hassle.

This was an opportunity too good to pass up.

The idea of having a conference for all limb-girdle patients, regardless of one’s subtype, is not a new one. There are Facebook groups with thousands of members where limb-girdle patients of all subtypes communicate with one another and share advice and experiences. Many are good friends, but have never had the chance to meet in person. Until this year, there has never been an opportunity to bring all these different patients together, under one roof, for any length of time.

Continue reading “A Weekend at the National Limb Girdle Muscular Dystrophy Conference”