Building a Better Me: A Journey Toward Hope and Renewal 

My Mom was told I would not live, and that I would not be able to think well or really do anything while I was living. In my life as someone with cerebral palsy (CP), several doctors shared opinions about what I would or would not be able to do. I’ve spent much of my journey working hard to overcome challenges related to my CP, stubbornly proving many doctors‘ opinions incorrect in the process! My medical challenges primarily involve my mobility and vision, and I have already had countless surgeries in my lifetime.

Prior to my early thirties, I was in a stable place with my cerebral palsy. I lived on the 2nd floor of buildings in college and during my time serving as a missionary and never required any assistive devices. Shortly after being hired for my current position as an exceptional student services paraprofessional, I began to have trouble walking. Mobility trouble progressed quickly and horribly. One morning I walked into the building...and in the afternoon I was rolled out in a wheelchair. Fast forward to a rainy Wednesday, I told my Mom to stop at Walgreens and we came out with a rollator because I just couldn't walk on my own anymore. I was in horrible pain, my abilities kept declining despite being under the care of doctors in rehab medicine at a very well known teaching hospital in my region. 

My cerebral palsy was controlling my life instead of being able to live life with cerebral palsy. 

A colleague of mine shared an article spotlighting a teacher with cerebral palsy who found healing, and restored quality of life, after she had surgery by a Weinberg Family Cerebral Palsy Center provider. I was beyond thrilled at the prospect of seeing a provider who knew from experience about truly helping adults like me! 

And to know there were doctors and surgeons who wanted to listen to me and believed I and my quality of life were worth restoring, was music to my ears and my heart!

My Mom was instrumental in helping me see my superhero providers! She reached out to Dr. David Roye, explained my sharp and continuing decline in abilities and quality of life, and received a reply within fifteen minutes. I saw Dr. Roye on the next school holiday. After reviewing my X-rays, explaining what they revealed, and discussing a plan of care to help me live life again, Dr. Roye called Dr. Roshan Shah, Director of Complex Adult Hip and Knee Reconstruction at Columbia University and partner of the CP Center. Without question, if I had not been able to be seen urgently by Dr. Roshan Shah, and Dr. David Roye, I’d be sharing an entirely different story.

My former provider wanted me to have a Baclofin pump implanted and to continue with Botox and muscle relaxers. Literally, the last thing he said to me was, "Call me when you need a wheelchair." As it turned out, I urgently needed a left total hip replacement!

This is a good time to remind you, patients: reach out and advocate for yourself. If a treatment or provider is not a good fit, you need a new treatment or a new provider.  If your provider is not listening to you, call and speak with someone at the Weinberg Family CP Center. Please don't take no for an answer or accept disrespect. I learned the hard way that speaking to different people at the same place can be key for getting urgently needed help.  

Without my superhero providers at the CP Center, I would have continued living in severe, chronic pain with no relief or hope of recovery in sight, unable to move without an assistive device. 

I received the gift of my new hip on December 15th, 2017. An anonymous donor surprised me by covering what I owed related to my surgery and hospital care!  The CP Center is imperative. Many people with CP need vital, expert care in this loving and life affirming place. By the time, I met Dr. David Roye and Dr. Roshan Shah, I was traumatized from my past and had nearly no fight left in me.

Every provider I have ever worked with at the CP Center and Columbia/NYP has been excellent. Excellent means: an active listener, excellently skilled within their specialty, professional, respectful, kind and compassionate.   

I now give what I can monthly to the Center from a place of deep and abiding gratitude for the many miracles God did to get me in to see Drs Roye and Shah, and to provide for all the details related to my total hip replacement surgery.  Giving is joining in with the beautiful and miraculous happening within this Center and hospital system. God bless you all for caring for us as you would want to be cared for if you were the patient. 

This excellent care set my body on a path to healing, my quality of life is nearly what it was before I started to lose my ability to walk independently. My mind, emotions, and heart are healing as well. We all need hope. It is sunlight for the soul. I also appreciated the help of Dr. Charles Popkin, an orthopedic surgeon who specializes in injuries of the knee, shoulder, elbow, and hip. When I had my initial appointment with him post hip replacement, I was mentally prepared to hear I needed a knee surgery, but instead he prescribed physical therapy to help my knee get stronger and a knee sleeve to help with overall strengthening and knee pain relief.   

This year, I am learning to walk my dog, Reesie.  He became my dog while I was using a rollator. It has taken physical and mental therapy to trust I can safely walk my dog. In 2020, I began giving blood regularly. I give blood because I know I’ve received blood and because I can now give blood. I want to give blood six times in 2021. I hope to earn a Masters in Teaching or a Masters in Psychology before my next hip replacement. 

Since I live in Georgia, I’m technically not a New Yorker, but I love many New Yorkers who choose to help others every day and, together, lovingly built a better me. I am invested in loving and praying for someone at NYP/Columbia regularly. Sometimes this means sending encouraging messages to providers. I believe in choosing kindness as much as possible and I’ll be the first to say, it’s the harder path. Yes, it is worth it. Life is hard. There is no such thing as too much genuine love or kindness, ever. I am blessed to be a blessing.  

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