Rare Disease Day 2018

Today is one of my favorite days of the year: Rare Disease Day. Held annually on the last day of February, it is a day to celebrate those living with rare diseases, and also to raise awareness for the many different types of rare diseases that exist in the world. And there are many.

I consider it to be one of my favorite days, not because I enjoy having a rare disease (let’s be serious!) but because it brings out all the wonderful feelings that make life so meaningful – love, community, passion – just to name a few. What you won’t find, however, is pity – just the opposite, in fact. Rare disease patients don’t want you to feel sorry for them, just to understand what it’s like to walk a mile in their shoes.

Continue reading “Rare Disease Day 2018”

The Reluctant Traveler: TV Star(?)

Today I had the pleasure of appearing on WTNH’s Good Morning Connecticut, which is Ch. 8 here in the state. It was a great opportunity to raise awareness for Rare Disease Day, which is taking place this year on February 28th, and also to talk about my personal experience with a rare disease. I always enjoy opportunities like this to break out of my shell and reach new audiences. Many thanks to Quinnipiac and Ch. 8 for setting this up!

Continue reading “The Reluctant Traveler: TV Star(?)”

5 Years

Five years ago today, my coworker and good friend Carly Hughes passed away from cancer at age 24. The day is forever etched into my memory. Part of me still wants to believe that she got better, came back to work, and resumed her life. It still seems inconceivable, even after all this time, that she is actually gone.

Continue reading “5 Years”

10,000 Hours

This is a continuation of my post from earlier in the week, which you can find here.

In Malcolm Gladwell’s famous book, Outliers, he talks about several factors that set high-achievers apart from the rest of the population. One of the main takeaways of the book is something called the “10,000 Hour Rule” – basically, anyone who has ever become an expert at anything has needed to immerse themselves in a task for at least 10,000 hours. This holds whether you’re the Beatles practicing to become the greatest band of all time, or Bill Gates learning to program a computer.

Screen Shot 2018-02-15 at 8.27.26 PM
An interesting read.

Although the premise has been the subject of intense debate, what is beyond argument is that the more you practice or experience something, the more of an expert you become. It’s rather straightforward.

Assuming the 10,000 hour rule is mostly true, I boldly assert that I am an expert at being a patient with muscular dystrophy. It’s an odd thing to say, but ever since it took over my life ten years ago, it’s always been on my mind. It has changed me physically, emotionally and spiritually. Many of my experiences cannot be adequately explained to the general population, no matter how much someone wants to understand.

Continue reading “10,000 Hours”

Crash and Burn

My life seems to be moving in fits and starts these days. Two steps forward, one step back.

If you have been following my journey for any length of time, you know this is nothing new for me. It comes with the territory of living with an adult-onset muscle disease. Pick your favorite metaphor – life with this disease is a roller coaster, a series of peaks and valleys, a twisting and turning road. Left, right, up, down – the path is never straight or level. The lack of continuity is often maddening, and always frustrating.

I’ve learned how to keep a level head through it all, but sometimes, life can be too much. Sometimes, no matter how hard I fight, I have to admit defeat. Not a lost war, but a lost battle.

Continue reading “Crash and Burn”

My Role Models

Note: This post is a supplement to an article I wrote for the Muscular Dystrophy Association’s Quest magazine, which you can find here.

I have also written about the importance of role models in this post

I have had many role models over the years who have helped me come to grips with my muscle disease. Some I have come to know personally; others I hope to meet one day. And of course, there are those I will never get the chance to meet.

The goal of this page is to list all the people who have helped me in some way. Each person, at some point in my life, helped pick me up when I was feeling down, and I am forever grateful.

Eventually, time-willing, I will write a blog post about each person to give them their due credit. As of right now, I will list them out, and provide a link to their story or website, so that you can learn more about them. If you are having a tough time, I highly encourage you to Google them or click on some of the links below. Contrary to how it seems sometimes, there are many extraordinary people out there in the world that we can learn from and emulate. Continue reading “My Role Models”

Loud Noises

The other day, as I was typing away on my laptop, trying to write a chapter in my book, the “F” key detached for what must have been the hundredth time. Somehow, the underlying pins broke off about a month ago, and, rather than spend $300 to have the entire keyboard replaced, I have been toughing it out ever since.

Enraged, I was tempted to take the key and throw it across the room, but knew that if I did that, the key would win, and I would have to avoid any words containing “F” for the rest of the book. Try to write a paragraph without the words “of”, “if”, “for”, or “from”. It’s not gonna happen.

Continue reading “Loud Noises”