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A Letter to Us

A Letter to Us

Last week we got the following note from one of our amazing community.  His story is a powerful one, and one we thought worth sharing.  This is why we keep plugging along and why it matters.  

 

Hey Suffer Better:

I've mentioned it before, but the idea of Suffer Better really strikes me.  I got turned onto it because I watch and really enjoy the show Boundless, and I saw Simon and Turbo collaborating with you to raise money.  As I looked more into it, I was caught up by the simplicity.  What you stand for, suffering for a cause, really resonates with me.  Here's why:

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.  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.

18 months later 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 it 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.  Guanidino Acetate Methlytransferase 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 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.  The rarity of our condition doesn't necessarily allow me to race to raise money for a specific charity, although some groups are emerging now, so there may be an opportunity coming.  But 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 your 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 makes that suffering better.

Thank you for what you are doing.  I'm on board.

 

For more information about these creatine-related disorders, go here:  

https://creatineinfo.org/

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