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.
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  • Speaking of lists, I have updated my list of Role Models, which was about a year out of date.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?)


What I’m Grateful for This Thanksgiving

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”


Looking back to August, my main concern was surviving business school orientation. Those three days were a whirlwind: meeting new people, getting acclimated to chaos, all while trying to come to grips with the demands about to be placed on me. In the months since, I’ve survived about as well as I could have hoped. The end of the semester is in sight. In the blink of an eye it is already Thanksgiving; it is crazy how time flies.

The constant stress and hectic pace have worsened my muscle disease, which I knew would happen when I made this decision. Experiencing it in real time is frustrating. I am in constant fear of falling and getting hurt, and being too weak to perform basic daily tasks. I still worry that I will not make it through the entire program in one piece. But I must press on. Fear is not an excuse to stop.

More importantly, I have a lot to be thankful for. Thanksgiving break is the perfect time to remind myself of why this struggle is worth it.

First and foremost, I am thankful for the people I am surrounded by in my life. My parents mean the world to me. I am more reliant on them now than at any point since I was a young child. I have a wonderful sister and a young niece whom I adore. My friends – what can I say – they have seen my worst days, and my best. They are always there for me when I need them.

I am also thankful to have made so many friends already at Boston College. Although the small size of the class wasn’t my only reason for deciding to attend the program, it has made all the difference in enabling me to thrive. People know who I am, and they know what I am dealing with. I have taken advantage of the platform of Eagle Talk, a sort of TED talk for our MBA class, to tell my life story, and it has lifted a tremendous weight off my shoulders. People know what I am going through now and understand my vulnerabilities.

Second, I have my health. I’ve been sick a few times this first semester, as I got acclimated to being a student again and being in a building full of germs. When I am sick I am miserable, especially since I am so weak. However, it has given me a great appreciation for my overall health. I also know others who are going through much worse. Keeping this perspective is very helpful. Besides love, there is no greater wealth in the world than being healthy. We only get one shot at this life.

Lastly, I am doing what I want to be doing, even though I don’t yet know what I want to be doing. That may seem ridiculous, but it isn’t. I am motivated by change – making a positive change in my own life (furthering my education, and hopefully my income), and in the lives of others. I want to help as many people as I can, especially those with disabilities. The MBA program will lead me in that direction. I am beginning to understand my true purpose, which I realize is something that not a lot of people can say.

My condition is not something that I enjoy. But with a little reflection, and some time off to breathe, I get to see that there is so much more to life than my frustrations. Life is worth fighting for, every minute of every day.