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.
March is best known for basketball and leprechauns, but I bet you didn’t know March is also Cerebral Palsy Awareness month!
Cerebral palsy, CP, is one of the most common types of disability. Cerebral palsy is a disability caused by damage to the brain before, during or shortly after birth resulting in problems with poor coordination, muscle stiffness, weak muscles and tremors. There may be problems with sensation, vision, hearing, swallowing and speaking. Often babies with cerebral palsy do not roll over, sit, crawl or walk as early as other children of their age. While the symptoms may get more noticeable over the first few years of life and as people age, the underlying problem the brain injury itself does not worsen over time.
Please remember that everyone is not the same. If you see someone different, be kind, smile and say hello. Maybe they have cerebral palsy and maybe they do not, but at least you now have some understanding of what cerebral palsy is. People with cerebral palsy often need to adapt/modify how they perform tasks, however, they typically like the same things as you and want to be included.
March 25th is National Cerebral Palsy Awareness Day in the United States, sometimes referred to as Go Green Day! This day began in 2006 by a nonprofit organization called Reaching for the Stars (RFTS), an education and advocacy group run by parent volunteers. They realized there was no national awareness day for Cerebral Palsy (CP) like there was for autism, Down syndrome, and practically every other disorder and disease. In partnership with the Cerebral Palsy Foundation (CPF), advocates decided on March 25th as National CP Awareness Day and the color green to represent the day. They wanted the day to follow St. Patrick’s Day since people were already embracing the color green and could just continue to deck themselves out in green all month.
March 2nd also marked Read Across America Day and as an avid reader (or book nerd depending who you ask... pssttt Dad) I would like to end this post with my top 6 books about cerebral palsy (CP):
Also noteworthy are The Running Dream by Wendelin Van Draanen and Out of My Mind by Sharon M. Draper, but these two books in my opinion were a little too inspirational to make it on my official list.
And if you really like the color green or like supporting an awesome cerebral palsy warrior, you can go green again after all of the the summer fun and sun on October 6th for World CP Day which began in 2012!
My Power was featured on my previous blog in December 2018.
My power is my own. I decide, I control and I embody my power and how I use it.
No one can take my power away from me no matter how hard they may try.
No family member.
No personal care assistant.
I cannot make other people change.
I may not have control over my body, and I may not always have my emotions in check.
But I do have control over my power.
In honor of October being AAC awareness month, I would like to introduce you to AAC and share how you can be a respectful communication partner.
AAC stands for augmentative and alternative communication. You may have seen someone write in a notebook to answer a question. Maybe you have seen people using sign language or other gestures. You may have seen someone push buttons on a computer that speaks for them. These are all forms of augmentative and alternative communication, or AAC.
AAC includes all of the ways we share our ideas and feelings without talking. It is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. The goal of AAC is to achieve the most effective communication possible for the individual in order to maximize their potential and lead the highest quality of life possible.
There are many types of AAC from alphabet boards to iPads with specialized apps to Dynavoxes or specialized computers. The Picture Exchange Communication System, or PECS, allows people with little or no communication abilities to communicate using pictures. People using PECS are taught to approach another person and give them a picture of a desired item in exchange for that item.
I am able to speak but it is often difficult for outsiders to understand me, you need to focus on what I am saying and not be distracted. I can not speak clearly or fast enough for strangers to understand and be patient. When I have a lot to say it can become jumbled and you may only get bits of pieces and a lot lost in translation. My parents, siblings and close friends are able to understand me especially in one to one quieter settings. I use my iPad to communicate with others. People make assumptions that I can not speak and or understand. If I only communicated through text people would not know I had a disability. People, including doctors, are impressed with my writing ability and it changes their view of me.
Be patient. Talk to me. Listen to me. These are key messages for good communication partners. Consider 10 strategies to put the AAC user first in your conversations.
For me, personally, if it is quiet I prefer to try using my voice first especially if the person I am talking to is patient or familiar with me, as typing takes a lot out of me and a really long time. However, sometimes words just get stuck and it’s just easier to use my iPad.
Everyone has their own unique voice, experiences and desire to connect and be included, no matter their communication style.
It is always important to ask the individual their own personal preferences, be patient and understanding, speak to the individual as an equal and a person, not hover over the individual, not touch the person’s device unless the person says it’s okay and always always put the person first!
You can also learn more about the 10 strategies to be a respectful communication partner as well as access a checklist to see if you are a good communication partner here: www.assistiveware.com/learn-aac/follow-their-lead-how-to-be-a-respectful-communication-partner?fbclid=IwAR0Thh3hi0lD0NSwXG--J6xdYLdX9hYA9y-utORq5mYK5V27uxNxBt5RuWI
September is dystonia awareness month! And no, dystonia is not a foreign country like Genovia in The Princess Diaries.
Dystonia is a little-known neurological disorder that presents with extreme involuntary muscle contractions that cause twisting, repetitive body movements and abnormal posture. It has painful and devastating effects on people's lives. There is no cure and many patients live with chronic pain.
Dystonia is more common than ALS and Huntington’s Disease combined, but I usually end up having to explain what it is.
Imagine being awake for days because excruciating spasms relentlessly grip your body. Imagine not being able to walk, swallow, speak or brush your teeth because you can’t control your movements. This is my reality and has been for the past ten years. It is also a reality I share with more than 500,000 Americans.
Dystonia can affect a person's entire body (generalized dystonia), like me, or it can affect a specific area(s) of a person's body such as their hand, eyelids or neck. Causes of dystonia can include brain injury or cerebral palsy, environmental factors, genetic factors, some anti-psychotic medications as well as unknown causes.
To learn even more about dystonia, please check out the Dystonia Medical Research Foundation (DMRF)'s website here: dystonia-foundation.org
Although this year's in-person Zoo Walks for the DMRF (Dystonia Medical Research Foundation) have been cancelled due to Covid-19, you can still join with people affected by dystonia all over the country at our Virtual Zoo Walk on September 12. Registration is FREE. If you'd like to, you can also purchase event T-shirts and support the DMRF in other ways on the event website. Here's the link to sign up and support and to the agenda:
IMPORTANT: Times shown are for Central Time. All events will happen an hour later in Eastern Time.
Since finishing college, the world has become infiltrated with coronavirus which has drastically altered everyone's way of life. I debated picking back up my college blog A Little Imperfect Entirely Me whose title was heavily influenced by my all time favorite book My Perfect Imperfections by Jalapa Williby, but because of some copyright policies by Google and different ideas I have I thought it would be better to create my own unique website.
I will continue blogging here from now on, as well as posting reviews of books and movies with a disability theme under the Media Reviews tab.
Much of my life is still the same. It is still obvious I look different than everyone else my age. I still rely on my power wheelchair. My body still likes to express itself by an array of uncoordinated movements due to my cerebral palsy and dystonia. I still rock socks instead of shoes. My speech still sometimes comes out as a slew of jumbled syllables. At other times my speech is more intelligible.
In many people’s eyes I am either an inspiration or invisible. I am not an inspiration. Nor am I a ghost. However, I am just trying to live my life as fully as I possibly can. And I believe I have a lot to say and offer the world.