By Heather Urick
“You got to roll with the punches to get to what’s real.”—Van Halen
Living with a progressive, terminal, neuromuscular disease for more than 20 years has not been an easy burden to carry as part of my soul plan—but it’s never stopped me from living a full life and literally rolling with the punches.
Called Freidrich’s Ataxia, it is a form of Muscular Dystrophy that is autosonomal recessive, meaning that the chromosomal deficiency (carrying the diseased trait) had to be present in both my mother and father. Neither of them showed any physical signs of the disease. I was diagnosed at age 12. I simply stumbled a lot in those early years; however, the disease has taken its toll over time. I am now 40 and in a wheelchair, with a substantial amount of muscle weakness and a loss of motor control.
Despite the advancing physical limitations, I pursued an education, volunteered time with the Muscular Dystrophy Association (MDA) for promotions and fundraisers, worked and volunteered with Centers for Independent Living in three states, and I was crowned Ms. Wheelchair Arizona 2005.
Fighting against discrimination and stereotyping is an ongoing battle. While I don’t pay much attention to it anymore—because I know who I am—it still hurts to be labeled. Case in point: I began using a wheelchair when I was 19. People’s scorn for my limitations turned into pity overnight. I hadn’t changed, but the label society gave me did. Suddenly, I was seen as “disabled.” While difficult to swallow, this realization helped to fuel my now lifelong passion to help shift society’s perceptions around those of us who are physically challenged.
The bottom line: I believe in and promote an Independent Living philosophy, empowering people with disabilities to advocate for themselves and put the ABILITY in DISABILITY.
In the summer of 1996, I was 22 and eager to learn both in and out of the classroom. I had transferred from the University of Northern Colorado (UNC) down to Northern University (NAU) to be near a childhood friend. While attending NAU, I registered for a class entitled “Death, Grief, and Bereavement.” I joked to my good friend that we would take a class fieldtrip to the cemetery on the most beautiful day of summer. I soon found out this was not far from the truth—the class was required to visit a funeral home.
One of the class discussions was about Near Death Experiences (NDEs). Our professor, Dr. Harold Widdison, told us about a man who had Cystic Fibrosis, caught pneumonia, and died in a hospital. He reported traveling through a tunnel and speaking with a “being of light.” After viewing flashbacks from his 40 years of life, the “being of light” asked the man if there was anything else he would like to know. He replied that he wanted to know why he had had to live out his life with a debilitating disease. “You really want to know?” said the being of light. When the man replied “yes,” a flashback from a time before the man was born was shown to him. He was asked to choose an experience that he would like to learn from in his upcoming lifetime. He chose to live out a lifetime with Cystic Fibrosis.
This was a life-changing event for me! I had always viewed my disability as a cross to bear, a punishment, an uncontrollable force that was destroying my body from the inside out.
Understanding that my disability was my choice gave me control back over my life—something that had been missing for more than a decade.
Based on this revelation, I was planning to write a book with my father that included his perspective as the parent of a child with a terminal disease. It never came to pass because, in an unfortunate twist of fate, I outlived him. He passed away unexpectedly in 2005 from Squamous Cell cancer—but his strength and the memories of the amazing times I shared with him continue to live on in my heart every day.
My fondest recollections: I was approached about being part of the Ms. Wheelchair Arizona Pageant while attending a Spinal Cord Convention for work in October 2004. I had no idea there was any such thing, but the pageant actually has been in business since 1974. A local bridal salon donated beautiful gowns for all of the contestants, and I was honored and excited to be asked to participate. It brought back memories of my Grandfather (ironically, my dad’s father), who had recently passed; he would always announce my arrival in a room by chanting “Here she comes, Ms. America…” So I entered the pageant in his memory. I didn’t expect to win, but I did!
With this new title, I became an advocate—not a model. I made appearances around the city, at the March of Dimes walk, the MDA Telethon, etc. On September of the following year, I was booked for a 20-minute (yikes, 20!) speaking engagement with the Paralyzed Veterans Association (PVA). My dad had a lumpectomy just six days earlier, but he still managed to come at the last minute. It was the last time I would—unknowingly—see him alive, and we spent the entire two-hour drive to Flagstaff, AZ, frantically revising my speech.
“This isn’t going to be that bad,” I thought when we arrived at the venue. We were led to the front, close to the stage. I sat with my back to the audience, not paying much attention. When I got on stage and turned my chair around, I saw that the crowd had grown—a lot. All the tables were full and people were standing EVERYWHERE! Video cameras and microphones lined the back wall. I made it through with no eggs or tomatoes thrown at my head.
My last words were to my dad. It was a night honoring heroes, and it was his birthday. So, in front of 400-plus people (my dad LOVED the spotlight), I named him my personal hero and wished him a happy birthday. During the applause, I saw tears glistening on his cheeks for the first and last time.
In closing, I want to remind you that deep down we are all heroes—and that is the one label we all deserve to have bestowed upon us. We come to earth to live and learn through challenges that we help orchestrate at a higher level. May you always look at them as blessings rather than curses—and learn to roll with the punches along the way.
Heather Urick has a degenerative, neuromuscular disease. She 40 years old now and she needs to reestablish herself physically, emotionally, spiritually and intellectually about every 4 years, which is the rate at which her disease progresses. Heather views this as an opportunity to ‘recharge her batteries. ‘ She has chosen to view her life as an opportunity to teach and learn. She feared that her work as an advocate was over when her voice began to deteriorate, but she is grateful to have been given this rare gift of being able to reach people with her words. As an advocate, she has learned that life is not about what you deny yourself or choose not to do, it’s about the choices you make and what DO choose to do. She is grateful to everyone who has helped her get to this place in her life! Visit www.thewheelchairdiva.com.
This article is a chapter from the book Transform Your Life! written by 60 real-life heroes and experts and available at Amazon.com, BN.com, www.Transformation-Publishing.com and all ebook formats.