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.
Great photo and nice piece Amanda! I can certainly relate to some of your running experiences. The â€œIâ€™m never doing that againâ€¦â€ feeling you describe, normally comes to me the night before a race =(
Good luck this year! What race are you and Dan taking part in?
Thanks Emma! This year I have two new running partners: Matty & Michelle. Though Dan and I aren’t “official partners” he’s been keeping me on track with training for the Providence Half!
Very cool, Fois! So proud of your hard work, and excited for you!
Well written piece. You should blog more. Thank you for sending me the link and taking me on this journey with you. You work hard every day to achieve your goals. I’m proud of you.