Last week, I had the exciting opportunity to speak on the opening panel at the NORD Breakthrough Summit in Washington, DC. NORD, which stands for the National Organization for Rare Disorders, is a patient advocacy organization dedicated to individuals living with rare diseases and the organizations who serve them.
The purpose of the conference was to bring together different stakeholders in the rare disease space to discuss topical issues that affect the community. The theme of the conference was “The New Era of Patient-Focused Innovation,” and my panel, titled “The Next Generation of Rare Disease Advocates”, was slated to be the keynote. I wish you could have seen my face when I found that out! It looked something like this:
As the keynote panel, we had the task of setting the tone for the entire conference. The plan was to have each of us share our personal story and how we became a rare disease advocate. Once I learned who else was on the panel, I knew we would knock it out of the park. I was thrilled to take the stage with such a distinguished group, and even more thrilled that I still qualified as “the next generation”.
I love conferences, especially when I can participate as a speaker. Conferences are a great excuse to travel and meet new people, and more importantly, to get out of the house. They are also great for free pens.
This opportunity was all the more special because I almost didn’t apply to be a speaker – I didn’t know if my story was the right fit for the conference. But at the last minute, on a whim, I decided to apply just for the heck of it. What did I have to lose? Considering what I know now, I would have missed out on quite an experience.
As the conference grew closer, I could hardly contain my excitement. I counted down the days like I was waiting for Christmas. After weeks of anticipation, the day finally arrived to leave for D.C.
And not a moment too soon.
Unfortunately, since early September, I have had a rough go of it physically, and to some degree, emotionally. I haven’t been sleeping too well. My mind keeps wandering to the future – what my body is going to be like, my health, my family’s health, the fate of the world, that sort of thing. Weighty thoughts that don’t allow for restful sleep.
In addition to tossing and turning at night I have also felt a bit run down. For a while I was fighting some sort of cold/allergy hybrid that left me coughing, sneezing, and achy. Although I got over it, it left me weaker than before.
In the week leading up to the conference, I began having difficulty lifting myself up out of bed with my walker. My upper body balked at the movement, as if deciding it no longer wanted to comply. Each lift out of bed was a little bit harder, but I powered through in the end, giving full effort in the process. But I knew what the difficulty meant. I knew I wouldn’t be able to lift myself up like this much longer.
That realization put me into a funk emotionally. I wasn’t sulking so much as I was wrestling with the implications of what this latest weakness would mean for my future, especially since I was now also in the process of acquiring a power wheelchair. Milestones that once appeared distant were now in front of me, and no amount of mental preparation could prepare me for reality.
I am so grateful that I had the conference to look forward to, a chance to share my story with a brand new audience. This kept my mind focused on positive, productive thoughts, which helped me through this difficult time.
The Saturday before the conference, my parents and I drove down to Maryland, staying over in Hagerstown to split the trip into two parts. This way we could arrive at the hotel early afternoon Sunday and relax before my big day Monday. Being on the 8am panel was both good and bad. Good in that I’d get it over with right off the bat, bad because it was at 8am and I am not a morning person. Although I knew I should have gone to bed at an early hour, I was faced with a formidable obstacle: Both the Red Sox and Patriots were playing. As a dedicated Boston sports fan, it was illegal for me to not watch both games, no matter my responsibilities the next morning.
Thankfully, both teams allowed me to go to bed before midnight and in a good mood. If they had lost, let’s just say that 800 people would have had to listen to me grumble incoherently about the Red Sox bullpen or how the refs were out to get the Pats.
Somehow, I managed to get up at 6 and make it to the conference room by 7:40, chugging my coffee along the way. After an opening welcome from the CEO of NORD and a moving video message from NBC News chief foreign correspondent Richard Engel, whose son Henry has Rett Syndrome, it was time to head on stage. My dad wheeled me up, turned me around, and all of a sudden, hundreds of people were staring back at me.
Any residual sleepiness was gone. I was awake now!
Joining me on stage was:
- Dr. Anita Gupta, the panel moderator, who shared her inspiring story of being both an accomplished physician and a rare disease patient
- Taylor Kane, a 20-year-old carrier of the X-linked recessive disorder, adrenoleukodystrophy (ALD). Her father passed away from the disease when she was 5 years old and ever since she has been motivated to raise awareness for ALD, including starting an organization to advocate for other females who are x-linked recessive carriers
- Gabriel Low, 17, who lives with hypokalemic periodic paralysis and who biked across America last summer to raise awareness for the disease that also affects his mother
- Harjot Randhawa, a medical student passionate about educating fellow physicians about rare diseases, an often overlooked subject in medical education and training
It was an honor to share the stage with such a powerhouse panel. Each of us gave a 7-10 minute introduction before Dr. Gupta asked a set of prepared questions in the remaining time. By chance, I was the last to present my story, which proved to be beneficial, as it allowed me to mentally gather my thoughts and familiarize myself with my surroundings. There were 800+ people staring in my direction, but I was still able to find a level of comfort after a few minutes.
28 minutes in (how do I know this? I was positioned in front of the intimidating countdown monitor), it was my turn to talk. By now, I know my story down pat, however it doesn’t always flow easily when I tell it. This time, however, I was firing on all cylinders. Maybe it was the caffeine kicking in, but I managed to share my journey and my road to advocacy with a level of ease and comfort I’ve never experienced before. I was proud of my speech, which is a big deal considering I am by far my toughest critic!
After a few minutes of follow-up questions for the panel, the monitor clock hit 0, and our time was up. I let out a sigh of relief. Now I could relax and enjoy the rest of the programming at the conference. I left the stage feeling accomplished and exhilarated. We had kicked off the conference with a bang.
One benefit to being on the first panel is that for the rest of the conference, it was easy to meet people. Some came up to me to introduce themselves and exchange business cards, others let me know they enjoyed my talk. For someone like myself whose mortal fear is 1-on-1 conversations with strangers, it was a welcome relief to have my talk be an effective ice-breaker. By sharing my story, I gave others the permission to come up to me and share theirs. And it made connecting so much easier! Everyone I talked to was so nice.
But after a full day Monday, I was exhausted. The Red Sox were off that night, which is a good thing because, dutiful fan that I am, I would have watched the game until the wee hours if need be. As soon as I hit the pillow I was out. I ended up sleeping in a bit Tuesday, so much so that I missed breakfast and the opening session. But it was worth it. My body was heavy and tired, but I powered through. I wanted to make sure I saw some of the sessions, since there were many interesting topics being discussed, from accessing rare disease drugs to the latest innovations in drug development. I also had a couple work meetings for MDA that I had to attend. Thankfully, there was plenty of coffee available which kept me coherent and cheerful.
Tuesday came and went, and before I knew it, the conference was over. Just like that, it was back to the real world. Back to the grind.
As I stared out the window of our van on the ride home, I thought about what awaited me back in Connecticut, but I also thought about what I had just experienced. I met so many special people during the conference, people from all walks of life, representing different diseases and organizations, many of which I had never heard of before. Leaving this conference, I couldn’t help but feel that I had joined a rare disease family I never knew I had.
It was these happy memories that sustained me on Wednesday when life decided to strike me hard.
We returned home mid-afternoon and I went right to sleep. After getting up a couple hours later, I tried to get out of bed. Attempt #1 was a failure. I pressed down on my walker with all my might but my shoulders and arms just couldn’t do it. I slumped back into bed. On the second attempt I succeeded, not before pulling every upper body muscle in the process.
That was the last time I got out of bed on my own. I haven’t tried since. Now, I call to my dad who lifts me out. It is an unsettling feeling, a humbling symmetry to my life. When I was born, I was lifted out of bed by my parents, and 32 years later, I am being lifted out of bed by my parents once again.
It is a hard thing to accept, but I knew the day would come. But as I said before, these are not the thoughts I choose to dwell on. They are in my subconscious and to the best of my ability, that is where they will remain.
This conference could not have come at a better time. Although I left for this conference able to do something I can no longer do on my own, it is what happened in between that matters most in the end. The love and support of my parents and my new rare disease family is what allows me to face the future in confidence and in hope.