Last Sunday, I had the pleasure of attending the Jain Foundation’s 2016 patient conference in Dallas, Texas. The Jain Foundation exists for the sole purpose of finding a cure for dysferlinopathy (my disease), so I am always eager to help them when the situation arises. They knew I was attending business school and had a story that might resonate with some of the younger patients. As a result, they asked me to share my patient story, with a particular emphasis on goal-setting and navigating the early stages of the disease.
I was thrilled to speak at this conference for several reasons. First off – I’ve never been to Texas. This is actually the farthest away from home I’ve ever been. Second, I would have the opportunity to meet many people I only knew online through the Discovering Dysferlinopathy Facebook group. The only other time I had met any patients with this disease was at the 2013 Jain Scientific Conference in Washington, D.C.
I prepared my presentation a few days in advance, after I had a couple days to relax from graduation. During this time I inevitably watched segments on the news about how awful the security lines were getting at the airport. As it was Memorial Day weekend, I was mentally preparing for chaos.
We got up at 3am Saturday morning (yup, it was as fun as it sounds) for a 6:30am flight out of Bradley airport outside of Hartford. Thankfully, we had TSA PreCheck and was able to avoid the security lines since my dad was rolling me around in a wheelchair. If we didn’t have PreCheck, I think we’d still be in line.
That morning was not without drama, however. Right as we got near our gate, a woman walking down the corridor, not five feet from me, proceeded to throw up all over the floor. My dad did not see this, and nearly wheeled me right into the puddle. As you can imagine, I began to freak out and pointed at it, nearly throwing a temper tantrum to get as far away from the puddle as possible. When he finally got me to the seating area by the gate, he wheeled me around to face the corridor, just in time to see her throw up again in front of the women’s bathroom. Gross, I know. It was 5:45 am, so she either was hungover or had some sort of stomach bug/norovirus that I wanted no part of.
As someone who gets motion sick very easily, it was not the most pleasant experience to have in advance of the flight. Thankfully, that woman was not on our flight, and we made it to Dallas without an issue. We arrived by around 9:30am central time, and checked in a little after 11. I fell right asleep. I did not get much sleep the night before, even though I went to bed at 9pm.
So, to be clear, the conference wasn’t technically in Dallas. It was at the Dallas/Fort Worth Airport, at the Grand Hyatt attached to Terminal D. Given that people from all over the country (and who have mobility challenges) would be flying in, it made sense to have the conference in this venue. I did get to see the Dallas skyline from afar which was cool, but the only thing that screamed “Texas!” at the airport was the set of taps at the hotel bar. You don’t see Lonestar on tap in New England.
After a few hours spent resting, my dad and I attended the reception in the hotel ballroom. It was a great opportunity to meet some of my fellow patients in advance of the actual conference the following day. I met several new people at my table, which was exciting up until the point where I lost all energy and started to fade. It was going to be a long Sunday, so I resolved to meet everyone else at that time when I surely would have more energy.
My dad and I both fell right asleep….only to get woken up by the craziest thunderstorm I’ve seen and heard in years. The rain (or was it hail?) pounded against the window, with incessant thunder and lightning. My dad slept right through it, but, light sleeper that I am, I was wide awake, irritated and fascinated by the spectacle taking place outside.
Somehow I got up Sunday morning, although I was in a groggy haze. I needed multiple cups of coffee just to be able to form a complete sentence. I was scheduled to speak at 11:30, but happened to step out of the room a few minutes before my talk, and since they were behind in the schedule they switched my time slot with someone else. As a result I didn’t have to speak until the afternoon, which actually worked out great, as it allowed me to a) wake up fully and b) get more comfortable with my surroundings. By the time mid-afternoon rolled around, I had met more of my fellow patients, which meant more familiar faces in the audience.
As I mentioned before, my talk (which you can find here) was part patient journey, part lessons learned. Although I am a perfectionist and can aways find flaws in my presentation, the barometer that truly matters is that of the audience. Gauging from their reaction, my talk resonated with them, which was my sincere hope going in. After my talk, many people came up to me to introduce themselves. They enjoyed what I had to say, which meant a lot since I wanted to help others who were in my shoes.
The conference as a whole was fantastic. The different presentations were informative and relevant to issues I was concerned about, touching on topics related to accessibility, advocacy and empowerment. Most importantly, I made several new friends. I succeeded in meeting a significant portion of the patient attendees at the conference (I’m terrible at estimates but there looked to be around 100 people total who came, including family members), although I was not able to quite meet everyone.
Having this disease is one of the loneliest feelings in the world. Not only is it incredibly rare, but no one in the general population (including family and friends) quite understands what someone with this disease is going through. I don’t mean that in a bitter or resentful way, but the truth is, like other rare diseases, not many people can relate, simply because they don’t have the disease. What made this conference so important to so many patients who attended was that everyone could understand what everyone else was going through. For many who attended, this was the first time they met someone else with dysferlinopathy!
As soon as the conference began, it was over. On Monday we left to return to our respective corners of the country. The flight home was a bit bumpier than the flight down, which meant I was holding on by a thread by the time we landed. Not packing dramamine was a major oversight.
Nausea aside, it was an amazing experience, and I can’t wait for 2017. I hope next year other patients who could not attend can experience the joy of meeting new people without having to explain why you look or move differently. It is a tremendous feeling and an even more tremendous relief.