Written by Trisha Lynn Sprayberry
Las Vegas, Nevada
My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase in hand and a kiss to send me on my way, I was headed to Boston on a red-eye flight. I was attending my first patient conference, hosted by the FSH Society, and their inaugural #CureFSHD gala. It was at the grand Westin Copley Place Hotel in Boston, Massachusetts.
What makes this trip special for me is the fact that this was a solo adventure. Traveling alone is no big deal for most people, but for me, since I have facioscapulohumeral muscular dystrophy and am dependent on the use of a wheelchair, traveling alone to Boston was an anxiety-ridden challenge. A test, if you will, one that I was more than willing to not only face, but to obliterate
This was more than just a trip to Boston. This was a proving ground, and I had to succeed. Not because I want to show the world the capabilities and true independent power of those with disabilities, not even to demonstrate the true strength one can have with FSHD. I had to do this to prove to myself that if I can find a way to accomplish this journey alone, then I can find a way to accomplish anything.
I know it sounds like a cliché to say that, but it is true. This really was a magical and transformative experience, but even now, I fail to find an adequate way to describe the emotions that it evoked
Once I had parted from Erin, I went straight to the ticket counter. I checked my suitcase and was escorted through TSA and to my gate. By 9:50 p.m., I was separated from my power wheelchair and transferred into the airline’s aisle chair. When you are being strapped into the airline’s wheelchair, with the two shoulder straps and the lap belt, and then pushed backwards onto the plane and down the aisle to your assigned seat, it leaves you feeling like Hannibal Lector, sans the mouth guard and reputation, of course.
I settled into my seat, the rest of the passengers boarded, and off we went for a smooth flight, landing at Boston’s Logan Airport about 6:30 a.m. local time, Thursday morning. After de-boarding the plane in the same fashion, I was wheeled by an airport attendant to claim my wheelchair and luggage at the baggage claim.
The attendant kindly offered to call me a taxi, which I accepted, and then accompanied me to my ride. The second I reached the doors to exit the airport, my body tensed and seized my breath. It was freezing outside. I didn’t think much of the weather, though. I was just so relieved that my wheelchair and I both made it through the flight safely in one, functioning piece. That part of this whole trip was the thing that I had been the most worried about.
I arrived at my hotel and was checked into my room by 8 a.m. A huge thank you is owed to the FSH Society and SHIFT Communications for securing my accommodations for this trip. They had worked very hard the week before the conference on finding an accessible room for me, when ADA rooms at the conference hotel had sold out. Without their generous efforts, I never would have been able to have this experience.
After my look around the hotel room, I spoke with my family and went to sleep. After a long nap, I spent the evening unpacking, talking with my family, eating dinner, charging up my wheelchair battery, and connecting with fellow FSHer and dear personal friend, Susie, making plans to meet up the next day at the conference.
Friday morning went by like a breeze. I awoke refreshed and ready for the excitement of the day. The concierge called a taxi for me, which arrived within 15 minutes. The personal service of this hotel was above and beyond. Thank you, DoubleTree, for taking such good care of your guests!
When I arrived at the Westin, the entrance was crowded with bodies of people coming and going. Some of the bodies drew my attention. They were different from the others, and this made me smile. They were different in the same ways that I am, because they also have FSHD. When I saw those bodies, it was my body as it is, or as it was at an earlier point in my life. I had found a little piece of myself connected in this way to this world.
I followed the others inside and to the elevator, and the strangers waiting for the lift with me felt as familiar to me as family. This only made my eagerness grow. The two-floor ride felt like waiting to reach the top floor of the Empire State Building. I had grown so nervous, but I don’t think I was the only one. It was a very quiet ride up to the third floor.
I spotted my friend Susie outside the conference hall where the Patient Connect Conference was being held. She introduced me to her companion, her loving and supportive son. After touching base with them, I wandered around to find a bite to eat before things started up with the conference. It was worth the time to tour the beautiful architecture of the Westin Hotel.
I rolled my way back into the conference and found the table where Susie and her son were sitting. On my way over, I ran into Dan Perez, one of the co-founders of the FSH Society. I’ll admit, I felt a little bit star struck shaking his hand when we met, as he was zooming off to turn down the room lights for the presentations the researchers were giving.
I immediately was absorbed into the presentations. These researchers are on the frontlines of FSHD. These people are tirelessly dedicated to finding a cure for those of us affected. For me. And anything they had to say, I needed to hear.
I wasn’t the only one who thought this. Almost everyone in the room had either their pencils frantically scribbling notes down on their itineraries or napkins, or they had their phones poised to snap shots of the slides projected at one of the projection screens raised on both sides of the speaker’s podium.
There were rounds of questions and comments from patients, family members, and other supporters of FSHD research, and the researchers, doctors, and members of the FSH Society provided great insight into the breakthroughs our FSHD warriors are making toward treatments and possible cure avenues, such as CRISPR, a gene-editing tool. Many also contributed intimate stories and perspectives into the world of those living with FSHD.
During the break, everyone had a chance to mingle. This is when I had the pleasure of meeting quite a few people who over the years had become so familiar to me through our FSHD community on social media. Carden Wyckoff was there. She and her brother just completed a piggyback trek in the Appalachian Mountains. Carden is quite charming in person, her smile infectious.
I also got to meet for the first time many whom I have grown to admire and respect, leaders certainly in the eyes of our community: various doctors, researchers, donors, and members of the FSH Society and other organizations. Sharing a hug with June Kinoshita for the first time was definitely my favorite moment.
I took advantage of the intermission to call a taxi ahead of time. I had decided before I left my hotel that morning that since the Westin was only a 10-minute taxi ride away, I should have the time to go back to my hotel and change into more suitable attire for the evening gala. Well, I was wrong. The taxi was late, and by the time it arrived, I was being handed my name badge for the gala.
The gala began with cocktails with the “rock stars of FSHD research.” Guests arrived in classy evening wear, accessorized with a passion for a cure. The wait staff went around the room offering morsels of coconut chicken, macaroni and cheese bites, and bacon-wrapped scallops, while the bar offered spirits tailored for the evening. The “Red Cure” was a delicious cranberry concoction.
Positive energy exuded from the 200-person crowd as the hum of small talk grew into a cloud of conversation engulfing the room. It felt electric, and, it felt like a blow to the chest, humbling me. I found myself holding my breath in awe.
We were all swept into dinner, a wave of bodies filing into the same hall where the patient conference was held earlier in the day, the space now transformed into a breathtaking dining room filled with white linens, vivid flowers, and the glint of glass in the candlelight. My table was in the back, which allowed me a view of the entire room.
My fellow tablemates had come from around the world. There was a family of three from Brazil. Their daughter sat to the left of me, and we chatted during our meal. She also has FSHD and utilizes a wheelchair. She was a character; her personality shone bright. One thing we had in common was a love of piercings. We had a lot of fun. There was a lovely woman from France who sat across the table from me, and there were several researchers working on various projects for FSHD.
Dinner conversations turned into muted whispers as the FSH Society played a heartwarming short documentary about living without limits while diagnosed with FSHD. The young woman featured in this mini-film was vivacious and strong, a perfect embodiment of an FSHD fighter. She shared with us glimpses of her athletic lifestyle and how a positive attitude can motivate you into doing anything you set your mind on. It was lovely.
The auction followed, and two 2017 Super Bowl tickets were snatched up by a New England Patriots fan, raising $8,500 for research toward a cure. The award ceremony came next (see story on page X). Dan Perez was presented with a commendation signed by Governor Charlie Baker, who declared November 11 “Dan Perez and FSH Society Day” in the state of Massachusetts. Thank you, Dan, for your 25 years of commitment to our disease.
Pianist Steven Blier and singer Miles Mykkanen entertained us with a rousing, beautiful program. And then the evening was winding down. Gala guests began making their last laps around the room saying their goodbyes. I called for an accessible taxi, figuring I might have a long wait. To my surprise, my ride arrived within 15 minutes, and I was back at my hotel room just before 11 p.m.
I arose Saturday morning eager to get to the second day of the patient conference. My flight home to Las Vegas wasn’t until after 5 p.m. that evening, so I figured I could get a couple of hours in at the conference before I headed for the airport to catch my flight.
That was my plan, but my taxi ended up arriving almost three hours late. The concierge at my hotel tried calling every taxi company in the city, but there was not an accessible taxi to be found. When one finally arrived, the driver spent 25 minutes futzing with a balky ramp. At that point, I decided not to risk missing my flight and headed to the airport.
Now, I could bore you with the details of spending four hours at Logan Airport waiting for my flight, but I think you can picture on your own staring out the window watching planes landing and taking off, wheeling back and forth through the terminal, playing with my phone, and grabbing a bite to eat from a food stand next to my gate before being strapped back into that narrow metal-framed aisle seat like an infamous serial killer and pulled backwards onto the plane.
Five hours later, I was back in Las Vegas, back with my family, and already anxiously looking forward to the next patient conference.
Most importantly, I did it!!!