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The Hope Within

Hi everyone,

I wanted to share a piece that I wrote a few months ago, and had intended to share before the craziness of the last couple months. However, I figure it’s more relevant now than ever!

This is a story about my spiritual journey – the good and the bad, the ups and the downs. Faith has sustained me in some of the darkest moments of my life. Without it, I wouldn’t be where I am today. I wouldn’t have peace. I would be a rudderless ship on a stormy sea, devoid of hope. It’s as simple as that. But the path to get to this point was not an easy one.

Please share with anyone who might benefit from hearing this message.

 

 

 

Quarantine Reflections

When I lived in Boston, it became a running joke that I was an accidental trend-setter. Every neighborhood I either lived or worked in became popular as soon as I left.

In 2008, I lived in an absolute dump of an apartment on Boylston Street, right behind Fenway Park. (It sounds cool on paper but trust me, it was a dump.) A year later, I moved out, and almost overnight, luxury apartments and restaurants popped up out of thin air.

In 2010, I was working for Thomson Reuters in Boston’s Seaport neighborhood. At the time, the building complex I worked in, a cluster of 100+ year-old brick buildings, was surrounded by lifeless parking lots. There were only two or three bars nearby. I left to go to another job, and once again, a new neighborhod pops up out of thin air, and is now one of the busiest places in the city.

Same thing with Oak Square, Brighton and Central Square, Cambridge.

Why am I telling you this?

Continue reading “Quarantine Reflections”

A Thank You to Healthcare Providers

Hi everyone,

I hope you are all staying safe and healthy during this unsettling time.

I find myself in a perpetual state of stress and anxiety. I have let go of the outcome and am trying to focus on what I can control, but it is easier said than done!

One of the ways I deal with anxiety is to write. It is my outlet. Lately, I have been thinking about all the healthcare providers I’ve interacted with over the years. Many of them are likely on the front lines right now, exhausted, but purpose-driven.

I see people applauding healthcare workers on TV every night. I live in a pretty remote area, so I’d be clapping to squirrels and birds (and possibly a roaming bobcat). To show my appreciation to healthcare workers, I decided to write a letter instead.

Continue reading “A Thank You to Healthcare Providers”

Rare Disease Day 2020

Although Rare Disease Day (Feb. 29th) has come and gone, the afterglow remains. It is one of my favorite days of the year now, right up there with Christmas, Easter, my birthday, and any day when I have a fantasy baseball draft.

I always try to attend or take part in a Rare Disease Day event when possible. This year, I had the honor of participating on a panel with my fellow rare disease advocates at MassBio’s Rare Disease Day celebration on Friday, February 28th.

It was a whirlwind of a day, but tremendously gratifying. To be in a room full of rare disease advocates, family members, state representatives, industry and nonprofit leaders, and other stakeholders was an empowering experience. We represented dozens of different diseases, but shared one purpose: to celebrate those living with a rare disease and to raise awareness for the thousands of diseases that often are forgotten and overlooked.

Continue reading “Rare Disease Day 2020”

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.

Continue reading “More of Me”

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”