Those are the words I managed to mumble to Dan Wilkens, my Running for Rare partner, around mile 12.5 last year; I couldnâ€™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: â€œIâ€™m never doing that againâ€¦â€
And I meant itâ€¦untilâ€¦I saw the yearly email announcing the Running for Rare Team pop-up in my inbox. Â My thumbs were possessed, forgetting the fatigue & discomfort of the previous year, I texted Dan to see if he was in for another year.Â 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 wasnâ€™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).Â 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:Â I Have PNH, PNH Doesn’t Have Me Â This year, my third year, I wanted to describe what it has been like to be a member of the Running for Rare Teamâ€¦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.