As 2017 came to an end, I applied for a $10,400 grant to attend an exercise science facility in Canton, Ma. called “Journey Forward” that specializes in helping people with spinal cord injuries regain function. I was chosen as a recipient of the grant, but while the grant is a significant contribution toward my participation in the program, the funds I received would not afford me enough therapy sessions to accomplish my ultimate goal of functionally walking. Any donation would be appreciated. For specifics on what your financial contribution will cover please see my story below.
I have also provided links to the “Journey Forward” website, an article that was written about me in the “Dedham Transcript”, and a link to the NORSE institute website so that you can learn more about my condition.
1.Journey Forward: https://journey-forward.org
2.“Dedham Transcript” Article: http://dedham.wickedlocal.com/news/20170816/dedham-mans-spirit-remains-strong-in-face-of-rare-condition
3. NORSE Institute Website: http://www.norseinstitute.org
May of 2011: Senior Year of undegraduate at Emmanuel College, Boston (Pre-Seizure)
January of 2012 (Induced Coma Post-Seizure)
May of 2017: Boston University School of Theology Graduation
September 2017: Wedding (photo by Tiffany Axtmann Photography)
On New Year's Day of 2012 I suffered my first seizure. To give you some context, following that seizure I was diagnosed with a condition called NORSE, which is characterized as the sudden onset of seizures that cannot be controlled with medication. As a result, I was placed in an induced coma. While in the coma I suffered a collapsed lung and went into cardiac arrest. By the grace of God doctors were able to revive and stabilize me to the point in which I could be raised from the coma. That is just the beginning of the story.
Most notably, after being raised from the coma doctors realized that I was completely paralyzed as a result of lesions that had developed on my cervical, thoracic and lumbar spine . I could not do so much as hold my head up or move my hands. I was alive, but my future looked bleak. The day before I suffered the seizure I had been teaching sixth grade and coaching high school basketball while I waited to attend Teacher’s college, Columbia University in the fall of 2012. The seizure changed my plans and essentially my life forever.
The one thing that has not changed though, is my determination. When I could not move my body I still planned to be successful. I am a "walking" person and I have not allowed my circumstance to handicap me. Over the past few years I have proved that I am in fact a “walking” person, and this is not simply a mantra. After leaving the inpatient facility I had been in for physical and occupational therapy, I did not go to graduate school, I went home. From 2012 to 2015 I spent most of my time at home with my parents where I continued to “walk.” I read, practiced writing, attended church, and engaged in thoughtful conversation with my parents every night. My wife (then fiancée) traveled from Cape Cod to Connecticut every weekend to remind me that I am loved. These things reinforced the fact that despite using a wheelchair, by no means am I handicapped.
In 2015, rather than pursue a degree in education, I chose to go to seminary and pursue a Master of Theological Studies. I was accepted to the Boston University School of Theology and received the Howard Thurman Fellowship. I moved to Boston, MA and for two years I overcame the challenges of living alone and navigating a busy city, both of which I had never done using a wheelchair. In May of 2017 I completed my Master’s degree, something that seemed completely unrealistic in 2012 when I could not hold a plastic fork long enough to reach my mouth. When faced with another challenge I did what I know best, I kept “walking.”
After graduating from Boston University, I moved to Dedham, MA with my wife who unbeknownst to me chose Dedham because it was close to an exercise science facility in Canton, MA called "Journey Forward" that focuses on helping people with spinal cord injuries regain function. My wife had learned of the facility four years prior to us moving to Dedham while watching a news segment and felt "Journey Forward" was exactly where I needed to be to achieve my goal of functionally walking. Simply put, my wife had taken a "step" on my behalf.
Our next "step" as a couple was marriage. I felt strongly that we should not have a wedding unless I could stand long enough to dance with my wife and my mother. We chose to get married in September of 2017 meaning if I wanted to carry out my vision of dancing at my wedding, I had to work hard. Using methods I had learned doing traditional physical therapy I exercised tirelessly at home and gained the strength to stand long enough to dance with my wife and my mother at the wedding.
Soon after the wedding, my wife's act of faith paid off. In October of 2017 I received notice that “Journey Forward” would be offering a $10,400 grant for a select group of applicants to attend the facility for one year. I applied, and just after Christmas I learned that I had been chosen to receive the grant. By giving me this grant, “Journey Forward” has shown a commitment to helping me achieve my goal of functionally walking.
Now, I need your support. One of the stipulations of the award was that I match the grant with $10,400 of my own. Because of the generosity of numerous donors, we have raised enough funds to match the grant. We Did It!! With that said, because insurances do not cover physical therapy at “Journey Forward,” I ask that you make a donation. All contributions beyond the aforementioned $10,400 will allow me to participate in more therapy sessions, which increases the liklihood that I will achieve my ultimate goal. To offer you some context I will outline what a donation would cover: the facility charges $100 per hour for therapy. Each session is a minimum of 2 hours. My grant covers 1 (2 hour) session per week for one year. Thus, a donation of $100 covers 1 hour of therapy, and a $200 donation would cover one full session. A donation of any amount helps and would be greatly appreciated.
In the few sessions I have had, I have already seen improvement. One important component is that the facility functions as a gym not a hospital, which as an athlete, is physically and psychologically a more conducive and encouraging environment for my recovery. I respectfully ask that you make a financial contribution to help me achieve my goal. For me, your donation is equivalent to you helping me take “one step.” Walking happens one step at a time, and I am asking that you donate as many “steps” as you can to my recovery.
*My wife Andrea Joyner will be managing all financial aspects of my campaign.
- diana stork
- Ashley Johnson
- Neilda Alves
- Lyndsey Callahan
- Andre Barbosa
Organizer and beneficiary
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