Today has been a day of mixed emotions for me, one of happiness and great loss.
I remember it like it was yesterday, reading the article telling us about the death of a young man named Stuart Ray. Wondering if he was the same “Stuart” praying that he wasn’t but knowing somewhere deep inside he was. Stuart was a bright young man who suffered from Ankylosing Spondylitis whose open and honest postings on our support group, changed the way I deal with this disease. I had always minimized what I was feeling or going through, trying my best to never burden or bother anyone with the struggles of my disease. I played the Tears of A Clown, routine with perfection. Never showing anyone the desperation, sadness and fear that clouded my life.
Stuart changed that for me. I was broken-hearted for his family knowing that he was found dead at his computer. That image has haunted me, and still does. He was like me and so many others who reach out on the internet to be connected in some small way to people who honestly understand what we are going through, making us feel less alone.
I feel in my heart that society and the medical profession failed Stuart, not as a patient with Ankylosing Spondylitis but as a person in need.
I wanted to do something to let people know someone honestly cares and no matter how bad it gets, you are never alone.
So I created The Faces of Ankylosing Spondylitis, where courageous people share their stories, forming a strong brotherhood of understanding to help us during the dark times and celebrating the good times of our lives.
I started on a mission to locate Stuarts family. I wanted them to know that Stuart mattered, that we cared and still do.
It was important to me to include him on Faces since he has been the driving force for me to do this site. I didn’t care how long it would take, I would succeed in this mission.
Today I did.
Many times in the past few months the phone would just ring… today it stopped and I heard “hello?”
In a moment of panic I almost hung up the phone afraid that in my need to do this. I would cause more pain or grief to his family. I was unsure of what to do. I asked her a few questions to determine if she was the person I was looking for.
She was. I spoke in great detail about the reason of my call, to say she was shocked is the understatement of the year. We spoke for a long time. It was wonderful, sad, healing and heartbreaking all at the same time.
Finally she told me that Ankylosing Spondylitis had left a huge hole in her family’s life creating such a deep sadness that there would never be any room for contentment.
She said as honored as she was and how much she admired me for going to such lengths that she isn’t sure about including Stuart on Faces. She said Stuart didn’t want to be defined by Ankylosing Spondylitis.
I pray one day she will change her mind, because my goal is to have Ankylosing Spondylitis to be defined by us.
It is my hope that one day when people hear the words Ankylosing Spondylitis they will remember the people who suffered with this disease and those who suffered along side of us. That the impact will be so strong that there is no possible way they can walk away unchanged. I hope by changing the person’s perception of this disease, we will come together to make a difference.
I pray that when we hung up the phone, a little piece of healing snuggled deep inside her heart, just as her son Stuart did mine years ago.
Today I am grateful that I followed my heart and did what my soul told me to… and that was to tell his family that Stuart mattered and will never be forgotten.