Finding My Purpose in Speaking About Scleroderma to MSU Medical Students
On Friday, July 28th, 2017, I was asked to speak on a panel alongside four others to over 100 Michigan State University second year medical students regarding scleroderma and how it affects our lives as a person, as well as emotionally, physically, socially as a patient who sees doctors for a chronic illness.
To be honest, I didn’t really know if I was going to do the disease justice. These were second year med students. Of course they are super smart and would most likely ask me all kinds of questions that I would have no idea whatsoever about the correct answer and would, in turn, make myself look like an ill-informed advocate for this disease. OK, worst case scenario! But still, it was a very real possibility!
I had known I was going to be speaking on this special panel since March. Mind you, I of course waited until the week of to actually start researching and studying my own disease! Here I was, a week before the panel, giving myself a refresher course on my disease. Reminding myself about the specific blood tests one gets when first diagnosed with scleroderma, and familiarizing myself with the new kinds of medical treatments that are being given to scleroderma patients. Trust me, the irony of it all was not lost on me! When Friday actually came I thought to myself, ”Amy, you are as ready as you are going to get!”
We arrived on campus at East Fee Hall at 9:30 a.m. Because of the size of the campus and all of the different halls, my dad brought my lightweight chair to wheel me around. So into the wheelchair I went and away we went to the side door of the building.
Just a little side note for you: As we were going into the building, my dad let go of my wheelchair to grab the doors to open them and neglected to put the brakes on my wheelchair. The next thing I knew I was rolling down the driveway of the East Fee Hall towards the street. In my most calm voice I called for my dad, who in turn let out a couple choice swear words and grabbed my wheelchair handles before I went to play in traffic!
Finally we make into the building and meet up with the other panel members and a lovely woman who was the coordinator for the day. We were given about 10 seconds to introduce ourselves, say hello and then we were split up and shown to our classrooms where we would be speaking for the first hour. Each of the other patients were paired up and put in classrooms. I, being the lucky duck I am, was put in classroom E105 by myself. Thank goodness I had my dad with me for support. Being nervous is so foreign to me. I cannot remember a time when I have ever been nervous. Especially about public speaking! I took it in college and aced the class, for cripes’ sake!
As I entered my classroom a few students were there and more and more were walking in to hear my lecture. I met the professor of the class. He was so nice and sweet. He ran through what the students had learned and what was expected of them to know about scleroderma, and I was surprised to hear they really only knew the bare minimum.
Then it was time for me to start. I introduced myself and explained where I was from. I told them how old I was now and how long I had been diagnosed with scleroderma. After those few short sentences the words just started to flow out of my mouth like a lazy river. It was easy! I just told the students my story.
How I was only 19 years old when I was diagnosed. How growing up into an adult with this disease has been difficult, frustrating and, at times, devastating. I spoke of how not every day of living with scleroderma is sad, and filled with pain. I told them about my support group on Facebook I put together and how I have met so many amazing, talented, kind-hearted people through the support group and through my own personal site called ”Staying Alive with Scleroderma.” I spoke about always trying to keep a positive attitude, and before I knew it, my hour was up and I wasn’t even halfway through with my story.
Now the rest of the scleroderma panel joined me in my classroom and we answered question after question from the medical students, the professors and the faculty. I even answered a few questions from the panel members themselves. All in all, the first half of the day went extremely well and I actually was excited to start the second lecture and panel discussion. I would have skipped lunch but we had to eat and take our meds, darn chronic illness!
By the end of the second and final panel I was a pro! I really thought I did well considering I had never done anything of that magnitude thus far. The whole day was so enjoyable for not only myself, but my dad had a blast too!
For the past five years or so now, I have been patiently waiting to figure out what my purpose is in life. Why was I given this disease and what am I supposed to be doing with my life since my original plan was blown to smithereens by scleroderma? Getting up in front of 100 plus people and educating them about scleroderma, my disease – disease I live, breathe and fight every day – was so invigorating for me. It opened my eyes to a whole other side of myself I did not know I was capable of! I can do this! I am an educator, an advocate, a counselor, a listener and a leader!
Speaking the truth about scleroderma is something I definitely am making a priority in my life from now on. I fell in love with sharing my truth and helping others – be it medical students, caregivers or total strangers to the disease – learn about scleroderma and understand that it’s not contagious, it can be treated and you can live a happy life for many years with this disease. This is something I know I can do, and I know now it is what I was put on this earth here with scleroderma to do. Now I just need to figure out where exactly to start!!!
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