‘Stories from the Road’: Pioneers in the Bleeding Disorders Community

We all enter history at a different point; our entry into the timeline of the world marks where the future of us begins as individuals and families. Sometimes, we accelerate into the on-ramp that launches us, and sometimes we bumpily move toward our mark.

On our first date, my now-husband remarked as he buckled up, “Oh, by the way, I have hemophilia.” This casual statement I consider rapid acceleration because, clearly, I was not expecting anything of the sort on the way to see “Legally Blonde.” When it comes to my daughter, the much pot-holed path would be more accurate, like a Washington, D.C., road in the summer, brimming with chewed-up and swirled-about steamy asphalt.

People in the hemophilia and bleeding disorders community use a multitude of linear expressions to talk about both history and the future, from the continuum of care to drug development timelines. As an English teacher and lover of words, I’ve spent plenty of time in the close reading of poetry; as a caregiver and advocate, words are my means of both expression and diversion — diversion being necessary for the sustenance of the mind and the soul.

In thinking through these on-ramps to our hemophilia timeline, the poem that repeats in loop fashion in my head is the oft-misunderstood, “The Road Not Taken,” by Robert Frost. Most of us learned this poem in school. Teachers, coaches, and parents often use it to guide us toward trying new things, taking chances, and being our true selves — all good ideas for growing minds and bodies.

But the reality of the poem is that it is not about any of these things. Frost illustrates, somewhat humorously, that the road “less traveled” is just a road — it is a choice, a time, and a place, and those choices are layers, not defining moments. I recently read Katherine Robinson’s eloquent analysis of the poem and her detailing of the trees, which brought new meaning to this idea of our own deeply personal timeline in history.

Due to the coloring of the leaves, Robinson asserts that the trees must be alders or birches, both pioneer species that repopulate a forest after its devastation. I’ve studied trees and plant life for years, and yet this correlation had never occurred to me.

If we think about this idea of a pioneer species as it relates to the bleeding disorders community — from our earliest recorded history with no cures and periods of near complete devastation, to today with ever-broadening treatments and the inclusion of women in diagnoses — this community is indeed a pioneer species.

Pioneering is never easy. As the great-great-granddaughter of land and sea pioneers, I know the stories well of choices, disasters, and disillusion, and most importantly, of survival. Hemophilia and pioneering are then synonymous: A setback is suffered, followed by a rebirth, and then moving ahead. With our community of patients, advocates, researchers, and medical professionals, forward is our only direction.

While it is a timeline and path often filled with frustration and despair, like the forest after a fire, each day, we move history forward.

Would I have chosen to get on a wagon headed west? Not sure. Would I have decided to board a steamship headed into the Atlantic and around Cape Horn at age 15 ? Not sure again. Did I wake up one morning 18 years ago and decide to meet someone with hemophilia? Also, no. But I did, and that’s the road I travel. It may indeed be the road less traveled, but most days, it is just my road — one choice layered on many. Are there troubles on the road? Most certainly. Am I alone? No.

As Robinson notes in her analysis, the act of assigning meaning is a function of memory. The defining moments of our timeline are the stories we create with our choices, not the act of choosing a particular path. Taking that first step onto any road is just a step. For those of us in the bleeding disorders community, our collective story is one from which we can seek and find comfort, knowing that pioneering is in our blood.

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Follow my new column, “Stories from the Road,” every other Friday on Hemophilia News Today. Here, I will focus on pioneering — as so many of our roads are new and evolving — with a special focus on aging with bleeding disorders, self-care, and women’s and girl’s issues, among others.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.