“I Can’t Believe this is Really Happening…”

posted on April 04, 2016 by Amanda Foisy

Those are the words I managed to mumble to Dan Wilkens, my Running for Rare partner, around mile 12.5 last year; I couldn’t believe I was about to complete my first Half Marathon.

A few minutes later, Dan grabbed my hand, and we were crossing the finish line together.

A few minutes after that I was sitting on a curb thinking: “I’m never doing that again…”

2015 Finish Line

And I meant it…until…I saw the yearly email announcing the Running for Rare Team pop-up in my inbox.  My thumbs were possessed, forgetting the fatigue & discomfort of the previous year, I texted Dan to see if he was in for another year.  I told him I wanted a re-match against mile 10; which is pretty much the point in the race I considered laying in the fetal position on the side of the road.

A year later, I vaguely remember being consumed by fatigue & discomfort, but what I mostly remember is that my Running for Rare teammate helped me to accomplish something I wasn’t sure I would be able to accomplish.

Distance running requires strength & endurance, two qualities which are not usually associated with Paroxysmal Nocturnal Hemoglobinuria (PNH).  My first year on the team I described what it is like to live with a one in a million, progressive bone marrow failure disease:  I Have PNH, PNH Doesn’t Have Me  This year, my third year, I wanted to describe what it has been like to be a member of the Running for Rare Team…I realized that somehow, the former is easier than the latter.

It has been humbling to meet strangers who are genuinely interested in understanding what it is like to live with a rare disease; encouraging to see what can result when more conversations about rare diseases happen; and pretty awesome when those strangers become friends and we experience what the phrase: Alone we are Rare, Together We are Strong really means.