Melissa is one of our clients here at Breakthrough. She is an amazing, determined, and motivated woman who has inspired us since the day we met her. She wanted to share her story here and we thought you may find it inspiring too! We thank Melissa for her contribution and for sharing her unique point of view.
“It is estimated that two out of every 1,000 newborn children will develop cerebral palsy and approximately 40% of those born with cerebral palsy will have a severe case. Right now, about 10,000 babies and infants are diagnosed with the condition each year. In 2002, the number of cerebral palsy cases in 8-year-old children was found to be 1 in 278. It is the most common motor disorder in children and is second only to autism as the most common disability in children.” There are three types of CP: “Diplegia refers to involvement predominantly of the legs although children with diplegia always have involvement in the arms to a lesser extent. Quadriplegia refers to dysfunction of all four extremities and arms/legs are involved equally or the arms somewhat more than the legs. Hemiplegia refers to individuals with unilateral motor dysfunction; and in most children the upper extremity is more severely involved than the lower.” (www.mychildwithoutlimits.org)
Melissa’s Story
I was born on May 10, 1985. I was born three months premature and due to lack of oxygen, I have Spastic Quadriplegia. I was diagnosed in 1988 when I was three years old. If asked, I always say having CP is the best thing that ever happened to me. Without CP, I would have never had the relationship I did with my Grandfather (Pa). I wouldn’t have had to, I wouldn’t have needed him. I always heard stories of how Pa hated children, but when I was born all of that changed. Being a soldier in the army and the fact that he traveled so much, his mother raised his three children. People claim it was him trying to “make up” for not raising his kids, I couldn’t disagree more. I was his first granddaughter. Alexa and Jessica followed ten and twelve years later. Alexa in 1995 and Jessica in 1997.
I was his world. It had nothing to do with anything but love. Pa took my diagnosis hard and did everything he could to give me the best quality of life. I wasn’t raised as though I had a disability. I had a normal childhood. I walked (albeit with Pa’s hands holding my hips, but I walked nonetheless), I rode bikes, swam in the pool, climbed trees, blasted music in my room and hung out with my best friend Beth for hours. I did everything a typical child would do. I had physical therapy when I was younger but I didn’t want any part of it. Why do therapy when I can hang out with Beth? I kick myself for those decisions now, but as they say, “if I would’ve known then…” Then again, I didn’t know I had CP.
My life changed dramatically in 1998 at the age of 15. At the age of 57, Pa was diagnosed with terminal skin cancer. Faced with death, Pa had to make a huge sacrifice. He sold our house because he couldn’t handle the upkeep. Beth lived across the street. For me, this meant no longer seeing my best friend every day. I was destroyed.
One fateful day in 2000, I was in my room, W-sitting on the floor (PARENTS: DO NOT let your children do this!!) listening to my favorite song “Running from an Angel” by Hootie and the Blowfish when Pa walked in my room. When I was listening to that song, people knew not to bother me as I was rocking out and just wanted to be left alone.
“We need to talk” Pa said, sitting on my bed.
“Okay…can you wait until the song is over?!” I answered, nastily.
“No. I’m dying.”
“Okay…did you call Uncle Buddy, Aunt Rose and Joey because it’s 5pm and I’m hungry?”
I didn’t understand the severity of the news. As my Grandfather’s cancer worsened, so did my CP. I went from walking to becoming a full time wheelchair user. Pa died on July 19, 2000 at 4am, at the age of 59. From then on, I became fully dependent on others. These days, I have 2 college degrees, an Associates of Arts in Liberal Arts and a Bachelor of Science degree in Music. I decided to have the Intrathecal Baclofen Pump implanted in 2009 to control and lessen my spasticity. That’s another article for another time.
I started the process for Self Direction in 2014. I moved into my own apartment on January 5, 2017. It was through the LONG ISLAND CSS & FRIENDS Facebook Group, that I discovered Breakthrough Intensive Physical Therapy and Christine. When I initially saw Christine for the consultation, it wasn’t the right time, I didn’t have the right support staff. I revisited the possibility of seeing Christine this past summer. This time at our consultation, we discussed my goals in depth. I was recently told by my Neurosurgeon, Dr. Steven Schneider (to me, he’s simply known as Neuro God), that my Dystonia was progressing and getting worse. Dystonia is “a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.” Any type of stress is a huge factor in the worsening of Dystonia as well. After freaking out for a few days, I called Christine and explained the situation and my dire need to see her. I needed to slow down the (Dystonia) progression at any cost. I was determined to do just that.
In the short time that I have been working with Christine, I have seen dramatic improvements in both my disability, Spastic Quadriplegia Cerebral Palsy and the underlying condition associated with it, Dystonia. For the first time in my life, at 33 years old, I ENJOY Physical Therapy and I hate missing sessions. In my first session with her, I was doing something I hadn’t done in 18 years since Pa was alive, I was walking independently using the track system in the cage. That doesn’t matter though, I was walking!! I COULD WALK AGAIN!!!!!!!!!!! For me the belt system that Christine uses replicates Pa’s hands, and represents freedom. Freedom to walk, freedom to hope, freedom to dream, and freedom to overcome the disability that has had a hold on me and dictated my life the past 18 years. I hate taking it off.
With the support of my assistant Danielle, I am going to start using my walker and leaving the wheelchair behind. I know going back is impossible, but I wish I met Christine sooner. All I can do is make up for that time, and years lost now. I have eighteen years to make up for, all the necessary supports and no excuses. In the words of someone very special to me, “Mind over matter.”
Watch Melissa walking by herself! We are so proud 🙂
She discovered her passion for the neurologic pediatric and adult population during her clinical affiliation at a special services school in Cape May, New Jersey. She is an active member of the APTA and continues to take post-graduate course work related to treatment methods for neurological diagnoses.
- Run to Break Through – The Perfect Day - November 17, 2021
- Episode 11: Autism mom and children’s author, Amy McCoy, shares her journey as mom and Advocate for Inclusivity - April 14, 2021
- Episode 10: Living with Cerebral Palsy Part II: Sharing Experiences, Outlook, and Challenges with Irene Dashiell, LCSW - March 16, 2021
