A New Year’s Note of Hope and Perseverance

The poetry and inspirational message of Mattie J.T. Stepanek lives on years after his untimely passing in 2004 at age 13 from a fatal neuromuscular disease called dysautonomic mitochondrial myopathy. Here, his mother, Jeni Stepanek, PhD., who continues to battle the same rare condition, shares with Purist a powerful reminder to savor every moment we have.

By Jeni Stepanek, Ph.D.

I have been pretty ill the past week—routine stuff (another intestinal blockage from the progression of radiation fibrosis)—but this was the most severe cycle in a long time, and the first time I have missed celebrating Christmas since 2015. I was frustrated with the level of pain and the miserable symptoms, and also by the reality that this is never going to not be an issue. As my medical conditions progress, interventions cause new challenges that are also often life-threatening and progressive and incurable.

And of course, when one is “down,” all the little and big and other rough and tough truths about life also lurk in the head and haunt the heart. It is interesting, really, how it is easier for us to notice and delight in the nifty and nice bits of reality during the terrific times—when we are in the light of life. But it is also easier for us to notice and dwell in the negative and nasty bits of reality during the tough times—when we are in the dark of life. This week, I worried about the possibility of an intestinal perforation with this severe cycle, and then I wondered about the progression of my cardiac challenges and the abnormal cells that may end up as more cancer, and about other medical this and that. And then I wandered into professional and personal this and that—not questioning my commitment or purpose at the university or with Mattie’s Foundation, but tearing apart my competence and effectiveness in both realms, because there is just no way to know if anything I am doing is making any difference to any one in any place at any time. I even went “there”—and asked, am I actually working from an illusion bubble and doing things that matter to me but they are not really going to matter to the future? Is peace really possible? Due to disability, I can’t do all my tasks at the university, so am I still needed and contributing there? Is it even remotely realistic for me to achieve any of the specific goals I have for the coming year? I am behind on everything, and will not catch up in this lifetime, so why keep trying to continue—at any level?

Oh and woe and sigh…yep.

It was a rough week—physically, emotionally and spiritually, as I lay there wondering how long I can, or will, continue to battle or tread or bide or tackle any or all of this—at any level.

The upside:

I am… Mama Peace. I am… resilient. I am… a welcome mat. And I am… OK.

Even in the midst of misery, somehow I can—and did—come to the balancing vision that yes, I will keep having one thing after another, and more and more intestinal blockages and cardiac issues and muscle weakness and cancer scares, and I will not see world peace in my lifetime, and I will not be able to do all I wish I could do—that I used to do—personally and professionally because of a failing body, and more and more “will and won’t” stuff. But, in some miraculous way, that all led me to the good news. I will have the privilege, the opportunity, to deal with these challenges again, and yes, again and again—if I am lucky enough to survive each miserable moment or mayhem-challenge in my life journey. I am so blessed, because between these recurring and challenging and painful (and honestly, very scary) times, I have the chance to live—with purpose, and to be a source of peace, and to remind folks of the importance of Mattie’s philosophy: “Remember to play after every storm!”

Once I set my mind and spirit on this, it was easier to cope with the pain and illness and fear. It didn’t change the medical reality in the moment, but it did strengthen me with resolution to deal with this, yet again, so that I can (as Mattie said) “just show up—with purpose” in some next moment.

I offered a prayer of gratitude—to God and to Mattie—for the gift of hope, a very real power that when rooted in faith, becomes an energy that strengthens us as we move into and through and beyond each next moment—whether that moment is another miserable one or a mountaintop one or some mundane one. Every moment is…a moment. And every moment matters. And not everyone has the privilege or opportunity to embrace (or cope with) another moment in life. And, as I taught Mattie, with every privilege comes responsibility, which for me, means keeping positive and getting back to the purpose of doing what I can at work and play—with pride, and professional and personal commitment, and quality.

I will just show up for my university work, and be present and purposeful, and also grateful for all the amazing technology that allows me to continue serving others in some capacity. And I will just show up for Mattie’s Foundation—teaching peace to young and old who are near and far, and bringing people and places together so that we create communities of peace—where we can live differently, yet together, celebrating the “mosaic of gifts” that Mattie reminds us “we have, we are…to nurture, to offer, and to accept.”

Peace is possible. Mattie matters. Mattie’s message matters. Our world matters and our quest for peace matters. I matter as a seeker and maker and bringer of that peace—whether for one person or for gazillions. Every moment matters.

We cannot always choose what happens to us or around us, or to those we love and care for, in any moment. We cannot always choose what happens now or next in life. And we cannot choose or change what has already occurred or unfolded or led to any moment we are in. But we can always choose our attitudes and our actions in any moment. We can always choose our words and our wants. And we can always choose to be a part of shining light on the light—so the good and great truths shine. But more importantly, we can also always choose to be a part of shining light on the dark—so the tough and tragic truths are seen more clearly, which is an essential step for accuracy in understanding, which leads to less fear and the ability to sift and sort realities—with purpose and peace—and ultimately, create a better future, and, as Mattie said, “Rebuild the shattered mosaic of humanity.”

So that was where I was this morning when I opened my eyes and began looking into a new day, and recovering, and recommitting to purpose—again. I began the wee hours with my ritual—a “wow! and thank You!” to God—the first words I give my breath to when I realize I am on the other side of another midnight—something I don’t take for granted, ever.

As we head into a new year, I want to share with the world two of Mattie’s later New Year’s Day poetry offerings (an annual tribute and tradition of mine) and this simple yet profound statement from 3-year-old Mattie, that still resonates to this day:

“The stars in the Heavens are a gift to people who remember to look up, and give praise.”