The Future of Healthcare

I could write for days and never fully tell all that is spoken through those eyes. I could detail wars, physical, mental, and emotional that would have decimated those who think they understand strength. And I may, but not today.

Today I will tell you to pay attention. Look closely. This right here is the future of healthcare. This is the face of hope. This is the face of grit and determination that comes only after you have dug yourself out of the trenches over and over again and refused to allow yourself anything less than success. This is the smile that says, “I will go the distance for you. I will not quit. You deserve better.”

You deserve better. YOU. The sick. The frustrated. The marginalized. The dismissed. Those of you on the very edges of that “bell curve” of medicine, in the places no one ever looks or understands. The Zebras in a world of horses. You deserve compassion. You deserve to be treated by someone who believes you can feel the best your body is capable of feeling.

It took a long time to see that smile. It may in fact have been the first time in close to two decades that I ever saw THAT smile. But, let me tell you, now that it surfaced, there is no stopping it.

This young lady told me many years ago she was going into healthcare to “do better.” And every single time we hug, my certainty grows. She will “do better” because she understands. She has felt it, lived it, and clawed her way through the depths of it.

Rare Disease Day is this month, a day when we try to raise awareness of rare diseases across the globe. As patients of one of those diseases, whose estimated occurrence rate in the United States translates into about 1,700 patients nationwide we feel this every minute of every day. We understand the urgency in ways that are impossible to articulate. We need to be seen. We need to be heard. We need healthcare professionals who will fight for US.

You don’t see the unsteady footing over there in lane 1, from two distinctly different-sized feet, and a leg still weaker than we’d like from a tumor buried just deep enough to make things extra hard. But, you see that focus? You see those eyes looking forward to the wall? You can almost hear the goals in her mind as she prepares to start the race. You have no way of knowing what it took for her to get there, on the block of this championship college swim meet. But, you don’t need to. You just know she belongs right there. She fought like hell to get there, and she will not be taken off course.

That race she is about to swim, it is 66 laps. A full mile of nothing but raw determination, and the ultimate head game. This kid is long game. She is not a sprinter. She never backs down from a grueling battle and she never gives up. She is the future of healthcare we need.

This kid. She is butterfly. Exhausting, like life. It can suck the wind right out of you. And yet, she has learned to breathe through it and sometimes make it look flat-out basic. This is the future of healthcare. We need to step into the room and tell our hard stories and tell them to professionals who can breathe through to the end. We need to ones who will not stop fighting the challenging races with us and for us.

This kid, she is not only a lone wolf. She knows that being part of a solid team is utterly essential to success. She will not miss the handoff, and she will fight like hell so that she and her teammates get where they need to be. This is the future of healthcare, where egos are less important than results, and when we work together EVERYONE is better.

These are smiles that say we don’t have to be on the top of the podium to get the job done. These are smiles that say, sometimes it takes a village and if we all do our part every single time we ARE better. THIS is what the future of healthcare looks like.

This swim meet last weekend was not all about swimming. It was about character, drive, and determination. It was about using what we have as a tool to get where we need to be, not as an excuse to stay behind.

This was about knowing that sometimes, you will hit a personal best every single time you go off the block.

It was about celebration, and accomplishment, not as an end, but as a means to press forward always.

It was about taking the time to cherish the successes because no one stays at the top of their game all the time. It was about remembering what it feels like to soar so that you can always dig back and remember you have more.

It is not always about getting a medal. But this weekend it was about that too. She wears that medal as a symbol that we are stronger than almost anyone realizes. She wears it to remind herself that the next time she is at the very bottom of the heap, wondering if she has the strength to get back up – she does. We all do.

We hugged for a long time in the hotel room that night. We talked about the others we “know” with Cowden Syndrome. We talked about how even in our small community there is such a wide berth of challenges. We took a moment to honor all of our “sisters and brothers” and dedicated that medal to all of them. Because a win for one of us, is a win for all of us.

And we talked about Ashton, our sister in Australia, gone far too soon. A bright light whose “you do you” mantra is one we speak with reverent smiles.

Sometimes you are on top of your game. Sometimes you can barely get off the couch. Sometimes you win. Other times you don’t. But every day we wake, work, fight and honor, and strive to be our best selves.

Remember this face folks. The future of healthcare is here. This young woman will be a Physician Assistant who makes a difference. She will make the world better for all of us one step at a time.

In solidarity with all of you, we remain


And, if you have a minute, unite us with RARE DISEASE warriors around the globe by leaving a comment here?

4 thoughts on “The Future of Healthcare

  1. You know, when we first met, I was the mom with a pten child who had probably 10 years under my belt at that point, and you were the mom just starting out, looking for advice. I am so proud of the warriors you have both become, but at the same time, I’m just devastated that your journeys have been pretty much as hard as ours and that sucks.

    You have a GIFT for writing my friend. I wish that I could tell my child’s story the way you tell yours. You are leaving a wonderful legacy for her in these posts.

    Meghan, what a miracle you are! Keep fighting girl – you are winning!

    Much Love,

    Eileen Shaughnessy

  2. I needed to read this. Your writing always manages to give me a little more hope when mine is waning. My daughter with Cowdens has just recently had a harmatoma removed from her calf and also loves swimming. She can’t wait to get back into the pool. Thank you for sharing!

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