Dear friends,
It is with tremendous sadness that I announce our friend, Marc James Turner, known by fellow patients as @Titan1, has passed away. After suffering immensely from PFS for a little over a year, Marc took his own life April 13th, 2022.
Marc was well known in the patient community. Despite the severe symptoms he endured, he was a friend and supporter of many, particularly Canadian patients like @Toughluck24. I know he will be missed by many.
I met Marc in June 2021 and got to know him well over the past year. We spoke for, quite literally, hundreds of hours over the phone. He was truly a remarkable human being: Highly intelligent, caring, sensitive, empathetic, curious and courageous. I can’t think of any other patient who isn’t involved directly with our charity who demonstrated such a willingness to look at the bigger picture of this issue, and what needs to be done. If you mentioned a scientific concept or strategic goal or anything related to PFS and Marc didn’t understand it, he would come back the next call and demonstrate a solid grasp of whatever it was. It was telling that PFS had consumed his life in this way, but it also provided a window into what he must have been like before. Speaking to his friends and family in recent days, it’s clear that whatever Marc became fixated on in his previous life, he would become an expert in.
Along with PFS, I got to know Marc better as a person. It was hard to learn about his interests before PFS, but over time, I did. Marc loved sports, and notably, the statistical element of sports. He and I had that in common, and we once spoke for over an hour about the movie Moneyball and the impact of Sabermetrics on baseball. He was amazed that I was a football fan, and we could talk about fantasy football draft strategy, or my favourite (but lousy) team, the New York Jets. Marc was a massive Tennessee Titans fan, so I used to recall my favourite memories of players like Chris Johnson and even old videos I had watched of Steve McNair. Although his zest had been robbed, I still got some glimpses into who he was before this all happened.
Marc always knew he would likely succumb to PFS, such was the severity of his symptoms. Once, Marc and I had a call where we compared the symptoms we both experience, and tallied them up. I thought my situation was bad, as I totalled approximately 25 symptoms that I experience to varying degrees daily. Marc had at least 40, some of them so severe they interrupted every waking minute of his life. This included physical symptoms such as extreme tinnitus and head pressure.
It’s a reminder of the extreme variability of this disease, and how as patients we have a responsibility to each other to always be kind, understanding, and accepting. Frankly, we are exhausted explaining this to patients who could never imagine the symptoms experienced by those like Marc.
Despite his immense suffering, he always knew what was the right thing to do and he was vocal about doing it. He always said what needed to be said. He wanted more than anything for our community to be united and pursue the right objectives so every patient would be free of suffering. Marc knew there was very little chance he would live to see even published results from our first study, let alone a treatment, yet he donated over 5000 EUR personally to PFS research. I’m sure his encouragement resulted in many more contributions.
In the strangest and most harrowing circumstances imaginable, we became friends. I will miss you very much Marc.
On one hand, this news is deflating, and a sobering reminder about the realities of this disease. Many suffering similarly will likely feel distraught. But I know that is not what Marc wanted. He wanted to leave a legacy behind. He wanted his story to create positive change, in this community and beyond.
I know that we have to keep going. We have to keep doing everything we can, so we can have justice for Marc, and the countless other men like him. We have to keep going so we can have answers, and safe and effective treatments for every patient. It saddens me - and is quite numbing to say - that we’ve had so many unnecessary suicides over the years. Each should serve as a rallying cry for our community to unite and do the things Marc was so vocal about doing.
Enough is enough.
Marc’s family has set up a memorial fundraiser in his honour, with all donations going to PFS research. I am so heartened to see his friends and family have contributed over 7000 EUR already. If you would like to make a donation in Marc’s memory, you can do so here.
Rest in peace my friend. We will never forget you.
and shocking. Let us all be together as a family.