People often say many different things about time and also hope, and not many people say the exact same thing. As many of you know I love music, especially when I am having a particularly uncomfortable day and lately a verse from Colony House’s “The Hope Inside” has really resonated with me: “Maybe there's a reason why / I get dragged beneath the surface / Every kick against the current / I sink down deeper and I ask myself / Is there something more than meets the eye / That makes all these troubles worth it?” There are so many joys and there are also many disappointment going through life. Each day has a purpose and meaning unique to each and every special individual.
There have been a couple of times when I have been depressed and felt utter despair such as when I was first diagnosed with dystonia in 2010, when I was recovering from my spinal fusion and processing my new reality and coming to terms with how it unfortunately had to happen in order to keep me alive in 2013 and 2014, and again when I felt painfully visible but utterly ignored my freshman year of college. But May 16, 2015 and May 16, 2021 were two very special days for me.
May 16, 2015
May 16th 2015 will be a day I will always remember and what a wonderful day it was to wrap up my senior year of high school especially after my heartbreaking junior year. My best friend, Melanie Edwards, and I pulled off something really special and an amazing event that not many people have been able to duplicate. Mel and I named, organized and held the first ever Stomp Out Dystonia 5K walk at Robert K. Shafer middle school in Bensalem, Pennsylvania to support the Dystonia Medical Research Foundation (DMRF). I wanted to bring the community together for a fun day and also educate my community about how dystonia has affected my life as well as my family’s lives since my diagnosis in middle school, as well as the other hundreds of thousands of individuals and families also living with dystonia. I have always had a desire to make a difference in the world around me and I continue to hope that I can help motivate others to stay strong and not give up or give people the courage to try new things. Looking back at pictures and videos can only provide glimpses of the amount of work that went into organizing the event and the amount of pride over how marvelous the day Mel and I pulled off. Mel and I worked tirelessly for months organizing and planning this event, obtaining sponsors, participants and permits as well as coordinating back and forth through countless emails with the DMRF. Our school lunches became orchestrated planning meetings up until the very last day before our walk and I still remember counting T-shirts all spread out over my kitchen table the night before the walk for hours and hours and then going over to Shafer middle school to mark the course. I took charge of writing our sponsor letter and most of the press interviews. Mel, being her amazingly creative and talented self, designed our logo herself and it is still something all of our friends and family talk about. The day itself was beautiful and marvelous, with sunny skies and comfortable temperatures in the upper seventies - low eighties, over 400 participants, around twenty sponsors and a little more than $16,000 raised. It was truly a wonderful surprise to see so many people participate and even more of a surprise to be presented awards for our awareness efforts by the DMRF.
Flash forward six years and a pandemic later to my college commencement ceremony on May 16th 2021...
May 16, 2021
While it was a long time coming with numerous fights and battles, my college commencement ceremony on May 16th 2021 lived up to almost everything I had been dreaming about since kindergarten. I began my journey at Holy Family University in August 2015 and felt painfully visible but utterly ignored and lonely, but I wheeled through to earn my bachelor’s degree in communications in December 2019 leaving Holy Family University with many new ideas about family and inclusion. Like many in my class, I was heartbroken that we could not have our planned commencement ceremony in May 2020 due to the coronavirus pandemic. When my university announced plans to make up my class’s commencement ceremony I was overjoyed, however the two weeks leading up to the day I have been dreaming about all my life was a very emotional time hearing some upsetting news about accessibility plans and a reminder to never stop fighting for what you believe you deserve. Thankfully everything worked out and arriving the morning of commencement, I felt an awesome overwhelming feeling of “Yes! I did it!” Fortunately the morning wasn’t too hot and while not all the faculty and staff were able to attend due to capacity limits it was wonderful to see those who did including: Father Mac - our campus minister and one of the first people to make me feel welcomed at Holy Family, Shannon - my friend who is the one librarian at Holy Family who has always been supportive and has read my work out loud at different receptions, Keely - the director of disability services, who I am honored to call my friend and am extremely glad we are able to confide in one another as well as connect over many interests we are both so passionate about, and finally Dr. Sullivan - my lovable book buddy and a huge supporter who helped me get IDEA off the ground at Holy Family, and who I would also like to thank for helping me move my tassel from side to side.
Having the opportunity to have an in-person commencement ceremony, both my mom and my dad attend the ceremony with me, and sit with my peers and wheel across the stage to be recognized like every other graduate meant the world and so much more to me. I also loved my cap topper designed by my friend Christy which incorporated my all time favorite book ever My Perfect Imperfections, the book/movie Wonder, and the club IDEA that I started during my time at Holy Family. It was wonderful to graduate with my friend Rory and see him and Christy for the first time in over a year. Later that afternoon, my family and my best friend went out for a very nice early dinner to celebrate. I recall posting on my Facebook that night the video of me wheeling across the stage, my cap topper and saying, and writing some of what I was feeling that day and it still remains true: my victory is not only for me it is also for the kid who has been told “no you can’t do that...” or did not get invited to hang out with everyone else, for the parents who try so hard to comfort their children even when their hearts are breaking and there are no easy answers, and for everyone who has loved and supported me throughout my journey. My Perfect Imperfections Grew into a wonderful IDEA
Both days are ones that I can look back on and celebrate the accomplishments. Though the memories are joyful, they are also a good reminder of all of the hard work that went into it and the path that I took to get to where I am.
*One last note: As excited as I am about the future, I also have much anxiety and have to admit certain things are getting harder including typing and I probably will need to continue to take intermittent breaks from posting on my website like I did from my last post in March until now. I would also like to possibly explore opportunities to serve as a consultant to other businesses and organizations to improve accessibility and inclusion efforts.