Over the weekend, I got to attend the annual Spinal Muscular Atrophy (SMA) Conference. This was my first time being able to go (because it was held at the Westin Hotel in Kansas City about 20 minutes from my apartment), and while I feared that I was overly excited and had created far too lofty expectations, it turns out that I had no reason to worry. The conference, which was the second most attended conference ever for “Cure SMA,” not only met my high expectations, but surpassed them in every way. I had a phenomenal time, met some amazing people, and learned a lot about how to live with this horrible disease. In addition, I got the opportunity to share some of my own experiences about creating a successful life with SMA, as a member of a panel discussion that was held on the final day of the conference. After spending the first few days of the conference getting to meet and talk with some of the inspiring individuals trying to figure out how to give their disabled children and families a fulfilling life (much like my parents did many years ago), I felt extremely honored to get to pass on what I have learned from battling this disease for almost 30 years. This event touched me and impacted my life in so many ways that there is no way that I could fit everything I want to share with you in one post. So, in order to make sure that I adequately discuss all of the important things I learned, I will be writing several articles about the conference over the next week or two. Today you get the first of these posts, which discusses the first lesson that was passed on to me, and it was given to me before I had even made it into the hotel.
Before I get into the first part of my experience at the conference and the lessons I learned, I have to first tell you a bit about how well-run and efficient this event was. I cannot say enough about how great of a job “Cure SMA” did in making this weekend a success. If you have ever organized, worked at, or even just attended a large, multi-day conference, you know that events like this are incredibly difficult to run and often seem a little chaotic. There are just a lot of moving parts to keep track of both before and during an event of this magnitude, and no matter how much you plan and prepare for potential obstacles, there are always going to be unexpected issues that come up along the way. While I am sure that the SMA conference was no different, and it certainly had its own share of problems that popped up, from the outside as an attendee you would never have known. Everything, from the parking accommodations to the audio/video equipment to the scheduling of the various workshops, was carried out masterfully. The “Cure SMA” employees and the volunteers at the conference did an amazing job of keeping things running smoothly (and even more impressively, on time), and I believe I speak for everyone who attended when I say “thank you” to these awesome individuals. It is only through their abilities to prepare for everything they could and overcome the unexpected obstacles that arose (two skills that all of us with SMA have had to master and appreciate), that this year was such a success.
All of the time and energy that the “Cure SMA” staff put into organizing the conference is what made this event such an incredible experience. Like I said, while I have been to academic conferences and such over the years, this was my first SMA Conference. In fact, this was my first conference of any kind that focused on disabilities, so I was not sure what to expect before I arrived. It had been several years since I had been around lots of other people in wheelchairs, and I had never been around this many other physically disabled individuals, so I knew that this would be different from any event I had ever been to. During the days leading up to the conference I kept wondering what it would be like at the hotel. I kept thinking about silly, little things like how long the wait for an elevator would be at a hotel completely booked by people in wheelchairs. Or how loud a room filled with hundreds of ventilators and suction machines would be. These are obviously trivial things that would have no impact on how good the conference was, but for whatever reason these are the things I thought about (the elevator line was long, but no one was in a hurry). Thinking about these logistical challenges and such only fueled my intrigue and anticipation for the conference, and even though I had no idea what to expect, I was excited and ready for this adventure, which I knew would be full of surprises and new experiences.
The first sign that this was going to be different from anything I had ever experienced occurred before I had even entered the hotel. As we drove up to the Westin and turned into the circle drive by the front entrance to unload me and valet my car, all you could see was this caravan of conversion vans with wheelchair lifts. They were lined up on either side of the driveway in two long lines about 10 cars deep, and everywhere you looked you saw families packing up medical equipment, suitcases, and wheelchairs into their vehicles. You would think that this sort of controlled chaos and slow-moving progress, especially when you are trying to get on the road, would have made everyone involved irritated and grumpy, but despite the mayhem everyone I saw had a smile on their face. No one was blaring their car horn because they could not get out, complaining to the parking attendants about the accommodations, or arguing with other drivers for being slow. In fact, it was quite the opposite. Everyone was smiling, patiently waiting their turn, and even helping other families pack up their belongings. This was an unexpected, but heartwarming, sight to behold, and it illustrated one of the many important things I took away from the conference.
It took me a while to fully appreciate what this scene had to teach me, but after giving it some thought, I realized the powerful lesson that was being presented to me that day in the circle drive. On any other day, at any other event, a parent holding up a whole line of traffic to take care of their disabled child, who needs you to drop everything to give them a suction, would be met with car horns, foul language, and any number of colorful hand gestures. On this day, at this event though, this same action was met with nothing but patience, smiles, and understanding. No one was upset, and the reason for this is understanding. They were not upset, because two weeks, two months, or a year ago they were in the same situation. They know the frustration and embarrassment that comes with inconveniencing a whole group of people, because this awful disease has erupted yet again to make your life difficult. They know what it is like to have to burden others close to you, or even strangers, to make sure your disabled child has the best life possible. They know the struggle that comes with having a family that is affected by SMA. They understood.
This knowing that everyone around you understands what you have to go through can be a very powerful thing. In addition to witnessing this idea outside of the hotel, I also got to feel its effects first-hand throughout the conference. It was so refreshing to be able to introduce myself to someone and not have to explain who my nurse was, why I carry around a suction machine, or anything else about my disability, because they already understood. Inside that hotel, for the first time ever in my life, I was “normal.” It is difficult to put into words, and I do not know if this will make sense, but experiencing what it feels like to be the “normal” one was an extremely refreshing and empowering thing. While I did not feel abnormal or misunderstood in general, nor did I think about how nice it would be to be “normal” very often, getting to know what it is like to just be Scott had a major impact on me. I was the exact same person at the conference that I was the weekend before, but the way I felt about who I was completely changed as a result of being in this environment of understanding. It helped me to better recognize and appreciate the fact that even though my SMA is a part of my identity, it does not define me any more than my gender, ethnicity, or religion do. It is only the way that others (as well as myself) view and understand my disability that it impacts my life. Getting to experience what “normal” feels like and gaining this insight into who I am is something that I will always remember, and I am certain that I will lead a happier life because of it.
Witnessing the controlled chaos outside the hotel and experiencing what it is like to be “normal” for a brief time illustrated the powerful effects that understanding can have on our lives. Watching an entire driveway full of vehicles patiently wait for someone to move without any signs of anger or frustration shows you how much your own understanding of what others are going through can influence your thoughts and actions. Not only that, but having a strong sense that others understand you, and the obstacles you face, can also have an enormous impact on your life. The common experience of battling a disease like SMA changed a situation that would typically be filled with misunderstanding, awkwardness, and frustration into one filled with nothing but empathy and compassion. You will be surprised at how often this phenomenon occurs throughout your life, if you really think about it. Keep this story in mind the next time you angrily flip someone “the bird” for holding up traffic or get upset when someone inconveniences you. Remember that you cannot always see or understand the struggle that others go through, and that the lens through which you view a situation makes a big impact on your feelings. Try to be more understanding of those around you, and you will eventually find that you have a better understanding of yourself as well. If we can all just be a little more understanding of one another, just imagine how much happier the world could be.
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