July 2020 Update

Hi everyone!

I hope you are enjoying summer and staying safe (or if you are in the Southern Hemisphere, enjoying winter). Even with COVID-19 wreaking havoc all over the globe, it is important to enjoy the little things when you can. For me, going outside is what keeps me sane. Not that it’s stopped me from talking to animals, but that’s another story.

A few quick housekeeping updates today. I just wanted to let you know that I’ve re-organized and added a few links to the right-hand side of the front page of this site. Some of the links no longer worked, so I’ve removed those as well.

Here are a few new links to highlight:

Optimize Yourself Podcast – I was honored to speak on Zack Arnold’s podcast in 2018 about my personal journey and to provide advice on dealing with adversity when life gets tough.

STAT News – On a whim one weekend in March, I wrote a letter to healthcare providers, during the height of the outbreak here in the northeast. My admiration for all healthcare workers, from doctors and nurses to janitors and front desk staff, remains just as strong as ever. The longer this goes on, the more we are going to need to support them once it’s all over.

I also have a couple of speaking engagements coming up this weekend, which is exciting. I always enjoy the opportunity to share my story. Although this is a small concern compared to everything else going on in the world, I really miss traveling to conferences. I miss speaking in front of live audiences. I miss meeting new people, seeing familiar faces, eating good meals, learning new things, and of course, the free swag.

This year, we were scheduled to go to Orlando, Cleveland, DC and Boston. And with the birth of my nephew last week (!), we would have gone down to North Carolina to see him. But unfortunately, that won’t be happening anytime soon.

2020 has made clear that life doesn’t always go the way we expect. Life often gets in the way of our hopes and ambitions, and we realize that everything we took for granted was fleeting all along. “When humans make plans, God laughs.”

But, life is all about how we respond to challenges. One such adjustment we have all had to make is transitioning to a virtual environment. Fortunately, several of these conferences are still taking place, and the panels I was scheduled to be on will be virtual instead. The only downside is I will have to wear a collared shirt and comb my hair. And maybe take a shower.

This weekend, assuming I can solve the challenge of looking like a real human being, I will be speaking on two panels. On Saturday, I will be participating on the Drug Discovery Roundtable at the MDA Engage LGMD Symposium, an online, one-day event focused on the latest research and clinical advances in Limb-Girdle Muscular Dystrophy. I am excited to share my perspective on how patients can participate in clinical research during this exciting time in LGMD drug development.

Then on Sunday, I will be participating on a panel for the NORD Living Rare Forum. This is the event that was originally going to be held in Cleveland this past May. I’m glad that the conference is still taking place, even in virtual form. NORD conferences are always a great time. The title of my panel is “Psychology of Rare: PTSD, Depression, Evaluation, Diagnosis and Therapy”, a heavy topic but one that is relevant to the rare disease community. It is a topic I know well, for better or worse, and I am confident that it will be a valuable discussion for all attendees.

All in all, I am keeping busy to the best of my ability. I am hoping and praying that we will soon be able to see one another safely again. In the meantime, please stay safe and healthy.

 

He listened for two minutes then scurried away. Even animals don’t want to hear about 2020.

 

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”

Road Trip, Part 1

Oh, hi there!

Yes, yes, I know. I haven’t written in a while. I am well aware. I guess you can say I’ve had a bit of writer’s block recently, and with the MDA Clinical & Scientific conference fast approaching, I also had a handy excuse not to write for a few weeks.

Which is a good thing, because the conference, and the road trip to Orlando, gave me a lot to write about.

Although I wasn’t technically on the road each day, I was away from home for three weeks, which seemed like an eternity. That is a long time to go without my adjustable bed.

But all in all, it was worth it. I had a great time at the conference, and also had a chance to see my sister and her family for a few days, which made the aches and pains of a long car trip bearable.

Rather than write a long narrative, I feel like making a list instead. I like lists. Most importantly, it’s easier to insert GIFs into a list.

This particular list is not ranked in any order. Instead, it’s 18 thoughts to commemorate the 18 days I was away from home. At least, that’s what I counted on the calendar. If it turns out to be more or less, too late.

This post is broken up into two parts. Even in list form, I can’t help but write thousands of words.

Continue reading “Road Trip, Part 1”

Storyteller

One of the greatest benefits of business school, besides the education of course, has been my evolution as a public speaker. When I started the program almost a year and a half ago, I was terrified to stand in front of an audience. I was fearful that my voice would crack out of nervousness or my mind would go completely blank. It also doesn’t help that I can’t stand for long periods of time anymore. My first presentation in school went about as awful as you’d expect – my mind went blank and I had to read word for word off the slide. It was painful to watch.

Thankfully, for both the audience and for myself, things have changed dramatically. I not only have improved my presentation skills, but I also have caught the speaking bug. Although I still get nervous and would rather not present on business topics, I can hold my own in front of my classmates. Part of my improvement has been due to public speaking classes I’ve taken at school. I’ve learned techniques and tips that have been extremely helpful in structuring my presentation and in controlling my body language.

However, the greatest reason for my success has been outside of the classroom. The opportunities I have had to share my patient story is what has truly gotten me over “the hump”. I am at my most confident when I am sharing my story with others, and talking about my journey, specifically what it’s like to go from ability to disability. After all, who isn’t comfortable talking about themselves?

I mean that jokingly of course. The answer is me. I am not naturally someone who likes to be the center of attention, under a spotlight both literally and figuratively. The first time I spoke about my condition in front of an audience, I thought I was going to have a panic attack and throw up on stage. Now though, I can recite my story almost without thinking. What I realized is that my journey these last eight years is so ingrained in my soul that it is part of who I am. There is no memorization required; I just have to tell it like it is.

Over the last three years I have had wonderful opportunities to speak and share my story in front of various audiences. In April 2013 I was invited to the Jain Foundation conference in Washington D.C., where I talked about my experience with the disease and my participation in the clinical outcome study sponsored by the foundation. Thankfully I didn’t throw up on stage, especially since it was videotaped!

A year and a half later, in November 2014, I told my patient story at a fundraiser I helped organize called Strength, Science and Stories of Inspiration. That night was when I realized I was onto something special. There had to have been 200 people in the audience, including friends and my parents. Although nervous, I had control of the room from the start and it was a great success. More importantly, it made me realize that not only was it not that hard to share my story, but that my story was having an impact on people.

That belief was solidified a few weeks later, when I gave an “Eagle Talk” – the BC MBA program’s version of a TED talk. In front of 50-60 classmates and professors, I gave a 25-minute presentation that was extremely well-received. The talk also had the added benefit of finally putting me at ease with my classmates. I had been looking for a way to tell my friends what it was like to walk in my shoes, since this was the first time I had met a new group of people while disabled. Everyone else I knew – family, friends and coworkers – saw me transition from ability to disability. They knew me when I could run and climb stairs, only to see me weaken before their eyes over the next few years. This talk helped to put my life before business school into context for my new group of friends. I wanted them to know I was not always this way, but that I am also not ashamed of who I am.

I not only find it exhilarating to inspire an audience, I also like being able to tell my story on my own terms. When I speak, there is no editor, no filter between what I want to say and what is actually said. It is not written on paper for people to interpret or misinterpret. My story comes right from the source, and the audience can see the emotion and the vulnerability firsthand.

At the same time I believe, and make clear in my talks, that my story is not any more inspirational than the next person’s. I don’t have a monopoly on inspiration. There are countless people who are dealing with far worse hands and who are inspirations to me every day. Instead, I like to think of my speeches as helping to make others aware that any ordinary person has what it takes to overcome adversity and to fight through setbacks. If I can do it, anyone can. That is where I derive my greatest enjoyment, in helping others to realize this fact. I don’t share my story to have someone come away from it saying “Oh he’s so brave!“, as if it takes a great deal of courage to get up in the morning and try to live a semblance of a normal life despite my condition.

But I digress. Since that two-week stretch in November 2014, I have been looking for more opportunities to speak to a wider audience. I’ve given several presentations in class where I’ve been able to put my newfound confidence to work, but I’ve been yearning to go back to what has gotten me to this point – sharing my story and offering advice. It’s been over a year since I’ve given a talk, and I have to say I miss it a lot.

The speaking bug has also been gnawing at me this year as I search for a job. I keep asking myself, what do I really want to accomplish in my career? I realize now that whatever I do, speaking to crowds has to be a part of my life. Maybe I should be a public speaker – I’ve certainly considered it. It seemed inconceivable two years ago, but now it feels like a real possibility.

Over the past few months, in addition to class work and job hunting, I have been working hard to find opportunities to speak, which is why I am happy to say that more talks are in the works!

Without further ado, here is my schedule these next few months:

February 24th – I am so excited about this – I will be speaking to students at Northwest Catholic High School in my hometown of West Hartford, Connecticut. As part of their leadership curriculum, I will be sharing my story, and time permitting, sharing advice and the wisdom that I’ve accumulated over the last eight years. I’ve always wanted to convert my story into a talk where I can motivate and give others practical advice when dealing with adversity, and this is that opportunity!

February 29th – Five days later, I will speak at the Massachusetts State House for Rare Disease Day 2016. I was supposed to speak last year but the weather thwarted those plans. I am determined to be there this year, even if I have to sleep in the State House to do it. (On second thought, I am a bit of a germophobe so that may not be a good idea.)

March 24th – I will be on a panel at Northeastern, talking to students with disabilities about job hunting and the experience of declaring one’s disability in the job hunting process, something I have struggled with personally. I am hopeful and confident that I will be able to ease their concerns and show them that it can be done successfully, even if it is an added nuisance.

April 3rd – The third annual Strength, Science and Stories of Inspiration event will be held, location TBD. Although I will not be speaking this time (besides a short introduction), it is a great event that I hope you all can attend! More details to come once I know more….

May 29th – Still somewhat tentative, but I have been invited to speak at the Jain Foundation’s patient conference in Dallas. I’ve never been to Texas so this should be a fun time! It will be great to meet other patients with my disease. Any time you are dealing with something like a rare disease, it is imperative to meet others who are going through what you are dealing with on a daily basis. There is a level of unspoken understanding that is a huge comfort. The staff at the foundation are also wonderful people who I’ll be happy to see again!

So that’s it for now – I am open to other opportunities as they come about. As I’ve learned, oftentimes these opportunities pop up out of nowhere. It’s going to be a busy next few months, but at least it will be worthwhile. If any of them get videotaped I’ll be sure to share them!