“How this GAMT Dad Deals” – Jerry
I recently came across an organization that, when I took a look at their mission and what they based their mission on, really resonated with me. They are called Suffer Better (sufferbetter.org), and their tagline is “give your all, and give back.” It reaches out to endurance athletes who take on grueling training and events, and who also have a charitable side. I myself have been testing my own resolve for years in endurance events. But after reading about Suffer Better, I started to think deeply about what makes me keep going when it hurts. The folks at Suffer Better ask followers to send them personal notes, and I decided to take the time to put down some of my thoughts. Below is what I chose to share:
I’ve been silently suffering for a long time. Ages ago, I was a collegiate runner. Not elite, just doing it for the love, the camaraderie. Post-college, I got away from it, and suffering was the furthest thing from my mind. About 5 years later, I found myself overweight and out of shape, going through the motions of life with ignorant bliss. Then the greatest thing happened, my wife got pregnant with our first child. I realized that she was about to go through something extraordinarily hard, and I wanted to do something to show her that I was committed, too. So I decided that, for each child, I would run a marathon. Mind you, I was a sprinter when I ran. Nothing more than 400m, so this was a real stretch for me. But I made the first one mind over matter. It wasn’t pretty, but I finished. I guess I consider that my intro to suffering.
And it was about 18 months later when we realized our first child, a son, had some developmental delays and was missing milestones. We were first time parents, and just trying to figure out what to do, and where to go. By the time he was 3, he had a little sister, and we still didn’t know what was wrong with him. He struggled with walking, he did not yet talk, and he was never fully responsive. He began having seizures, and then the seizures became intractable, even with cocktails of medications. Neurologists, geneticists, developmental pediatricians. Constantly, sparing no expense. No one had a diagnosis, just attempts to treat the seizures, and therapies to address his developmental delays. Cutting-edge genetic testing proved nothing. He seized, we treated, and on and on. I began to understand suffering, but it wasn’t physical, and definitely wasn’t better.
Our daughter was now 3, and was lapping our son with regards to development. We added a third child, another daughter. A blessing, really. Because at about 9 months, we realized she was following the same path as our son had almost 6 years earlier. That was the worst news possible. But it forced us to revisit root causes, because having two with the same thing means it has to have some genetic linkage. We changed hospitals. New doctors, new eyes, new rounds of tests. And shortly after, a diagnosis. Guanidinoacetate Methyltransferase Deficiency, or GAMT for short. An error of inborn metabolism where their bodies do not manufacture their own creatine, and therefore they are depleted of key fuel for muscle and neurological function. Incredibly rare. Less than 100 cases worldwide at the time of diagnosis. When left untreated, it is very damaging, as we had found out with our son. But, there was a treatment regimen of special diet and supplements that we could try. We went at it very aggressively, and what an amazing thing. Our littlest one, she made tremendous progress. Diagnosed at about 14 months, by the time she was 4, she had no signs of any developmental delay. Today, she’s a typical 2nd grader who dances and plays, as long as she gets her 3-times daily dose of supplements and maintains her special diet. And our son, who had suffered so mightily from seizures and delays, stopped having seizures altogether under the treatment. The delays still remain, and the neurological damage is done, but he slowly continues to make progress, and his world is a much happier place than it would have been without diagnosis and treatment.
And for me… my suffering changed. Having a child with special needs never gets easier, but having clarity and understanding helps. What early on was emotional suffering became something for me to channel into running, and continues to drive me forward through training. Just as I had wanted to suffer in empathy for my wife during her first pregnancy, now I found that I wanted to suffer for my son, who may not get to feel the joyous pain of competition the way I have. I’m still not elite, and could care less about that. But I try real hard, and I now have something to focus on when the hurt sets in, that pulls me forward when I don’t want to keep going. Something that makes the suffering “better”.
And so it is that the single phrase, “I Suffer Better” rings so loudly for me. I’ve shared it with friends and relatives, and get asked about it all the time when I’m flying the flag on a t-shirt or hat. It has a special meaning for me, and I hope that there are loads of others out there who can feel the same connection, the same resonance, and that something that allows us to not have to suffer silently any longer. It’s understanding how lucky we are to be able to suffer, and finding a motivation to make that suffering better.
I shared this with the crew at Suffer Better. They were taken by it, and asked permission to post it to their website and newsletter. Along with my approval to share, I also gave them some background on ACD, and shared the website link with them, which they posted along with my letter.