MY INTIMATE JOURNEY WITH LQTS

Looking back, the signs were there long before anyone knew what to look for.

I was a preteen when I first began fainting in the 1970’s—episodes that came on suddenly, without much warning, leaving me disoriented and afraid. At the time, they were brushed off as stress, low blood sugar, or “just one of those things.” But inside, I knew something wasn’t right.

By the time I reached college, the episodes hadn’t gone away. If anything, they had become more startling. One in particular still lives vividly in my memory. It was 1984. I was in my dorm/apartment home when the telephone rang. The call was from a boy I liked—a thrilling, heart-racing moment that should’ve made for a lighthearted memory.

Instead, my body short-circuited. A jolt of excitement surged through me, and I collapsed. I blacked out entirely, crashing on top of a counter of glasses. What I now know was a seizure-like episode prompted by a dangerous cardiac rhythm took over. I was terrified.

That episode led me to the Mayo Clinic in Rochester, Minnesota—an esteemed medical institution where I hoped to finally get answers. I underwent a full neurological workup. I met with specialists, endured tests, and sat in sterile rooms as they ruled out epilepsy, brain tumors, and other neurological disorders. The result? Inconclusive, seizure disorder.

What’s most shocking to me now is what wasn’t done—no cardiac evaluation. No one thought to look at my heart.

I left Mayo Clinic with a thick file of paperwork and a thin sense of reassurance. The experts hadn’t found anything wrong, but they hadn’t found anything right, either. I was still collapsing, still blacking out. Still scared. And now, I was also unsure if anyone would ever truly understand what was happening inside my body.

It would be years before I finally received the correct diagnosis: Long QT Syndrome Type 2—one of several types of inherited cardiac conditions now known under the broader category of SADS (Sudden Arrhythmia Death Syndromes). Type 2 is often triggered by sudden noises or emotional stress. Things like alarm clocks, doorbells, or—as it happened for me—a ringing telephone. My fainting spells were not neurological. They were electrical misfires of the heart.

There’s something deeply validating and heartbreaking about getting a diagnosis so many years after symptoms begin. On one hand, it makes sense of the past. On the other, it shines a harsh light on the gaps in our medical system, especially for women and young people whose symptoms don’t follow a straightforward path.

It was no longer just suspicion or possibility. The results were definitive: both of my daughters had inherited the same genetic mutation responsible for Long QT Syndrome Type 2. What I had unknowingly lived with for decades was now written into their DNA,

too.

The news landed like a tidal wave. At first, I felt guilt. Deep, aching guilt that something in my body had been unknowingly passed on to them. But underneath that was a rising sense of clarity—a shift that pushed me from confusion into conscious responsibility.

I couldn’t change the past, but I could show up for the future—fully.

That genetic confirmation became the call that awakened a more mature version of me. I was no longer navigating this condition alone, and that changed everything. I wasn’t just a woman trying to understand her body—I was a mother learning how to advocate, educate, and emotionally support two young women who would now carry this diagnosis into their own lives.

I began to read everything I could. I attended cardiology appointments armed with questions. I educated our extended family and became vigilant about medication risks, emergency protocols, and emotional stressors. But more than anything, I committed to being emotionally present—because I knew that fear, uncertainty, and anxiety would

become part of their lived experience, just as it had been mine.

I realized that my daughters didn’t just need information or oversight—they needed grounding. They needed to see someone living fully, not fearfully, with this condition. They needed to see that life could still be joyful, that their identity was not limited to a diagnosis, and that emotional connection is as vital to the heart as any

medication.

That moment—when science confirmed our story—was the beginning of a new chapter in our family. One defined not just by risk, but by resilience. And I stepped into motherhood in a deeper way than I ever had before—not to shield them from the truth, but to stand with them in it.

Living with SADS and LQTS Type 2 means I have to be mindful of the unseen—my heart’s rhythms, the triggers that could send it into chaos, the medications I must avoid, and the environments I must plan for. And, it means, my parenting role would take on a whole new meaning and purpose. It also meant I now would carry the weight of what could have happened during all those years when no one knew what was going on.

What’s remarkable—almost surreal—is that all of this was unfolding in 2013, a year that split my life wide open. While the pieces of our medical puzzle were finally falling into place, another truth was rising to the surface: my marriage was quietly, but unmistakably, falling apart.

Life doesn’t wait for us to process one trauma at a time. It collides. It converges. And in my case, it demanded that I face the truth on multiple fronts all at once.

As I stood on the precipice of understanding a life-altering diagnosis—not just for me, but for my daughters—I also had to confront the emotional void in my marriage. My then-husband, their father, was emotionally absent through it all. Unmoved. Disconnected.

It wasn’t just that he didn’t understand the gravity of what was happening—it was that he didn’t seem to care.

I remember moments that should have been defining in a different way: the late-night ER visits, the terrified looks on my daughters’ faces, the complicated decisions about medication and prevention. I faced them not as a partner in a marriage, but as a mother alone. It became painfully clear that the partnership I thought I could lean on in crisis had long since disappeared.

After everything I had lived through—the diagnosis, the storms of betrayal, the physical shocks that kept my heart beating—I found myself standing at the edge of something new. Not just recovery, but revelation.

There’s a strange clarity that comes after surviving the unthinkable. Once your heart has been shocked thirteen times and still finds its rhythm… you begin to wonder why. Why am I still here? What is my life asking of me now?

That question didn’t haunt me—it called to me.

I realized that my survival wasn’t an ending. It was an invitation.

For years, I had helped others organize their homes, manage their moves, and navigate chaos with practical support and compassionate presence. But now, I saw with fresh eyes that my true work was so much deeper. I wasn’t just a professional organizer—I was a guide through transition. A companion in disorientation. A woman who had walked through medical crisis, divorce, trauma, and estrangement—and come out alive. Scarred, yes. But stronger.

My own story became the soil for something far more meaningful than a career. It became a mission.

I began to shape my business around what had always come naturally: helping others find clarity in the mess. Not just physical clutter, but emotional weight. Not just relocating things, but helping people reorganize their lives—starting from the heart.

With my training in HeartMath, I finally had language and science to articulate what I had felt all along: that the heart has intelligence. That coherence between the heart and mind creates healing. And that creating outer order is only sustainable when we address the inner disorder we’ve learned to tolerate.

I could now hold space for clients going through death, divorce, downsizing, and diagnosis—not as someone who read about it in a book, but as someone who had lived it. I knew how to stand in the rubble and still see the blueprint. I knew what it meant to lose everything familiar and still rebuild something beautiful.

This work became my medicine.

Each person I helped, each space I reset, each story I listened to—it all reminded me that I hadn’t just survived for myself. I had survived so I could serve.

To walk someone through their chaos with grace is one of the most sacred things I know how to do. And every time I help someone clear what no longer serves them—whether it’s a room, a relationship, or an identity—I feel my own heart beat stronger.

Because healing isn’t just about the shocks that saved me. It’s about the peace I now help others find.

And as I stepped more fully into my purpose, something else began to shift—quietly, steadily, and beautifully: my daughters began healing, too.

We had walked through fire together—medical trauma, emotional uncertainty, and the destabilizing grief of family rupture. But now, we had knowledge. We had tools. We had each other.

I watched them step into their young adulthood not just with fear, but with fierce self-awareness. They knew their limits and their triggers, but more importantly, they knew how to listen to their inner compass. They learned that their bodies weren’t betraying them—they were speaking to them. And that they, too, could live full, intentional lives

with hearts that had once scared them. Now they advocate for SADS and LQTS in their own powerful ways, empowering others.

In 2017, my father passed away suddenly from cardiac arrest. It was a devastating loss—one made even more painful by the knowledge that his death may have been preventable. He had declined both beta blockers and ICD monitoring despite medical recommendations. At the time, I didn’t yet realize the full extent of how deeply this condition ran through our family line. But his passing brought that truth into sharp focus. It was a sobering reminder of what can happen when a silent condition like Long QT goes untreated—and it deepened my commitment to taking nothing for granted when it comes to heart health, advocacy, and informed choices. His loss was a chapter of sorrow, but also a call to stay awake, stay informed, and protect the future for my daughters, myself, and those I serve.

I watched my daughters step into their young adulthood not just with some fear, but with fierce self-awareness. They knew their limits and their triggers, but more importantly, they knew how to listen to their inner compass. They learned that their bodies weren’t betraying them—they were speaking to them. And that they, too, could live full, intentional lives with hearts that had once scared them.

Their journey is still unfolding, just as mine is. But there is strength in knowing that our family carries not only a shared diagnosis, but a shared devotion to living awake—fully awake—to what matters.

If there’s one thing I’ve learned through all of this, it’s that healing isn’t linear. It loops and spirals and doubles back. But every time we choose truth over silence, presence over avoidance, clarity over confusion—we take another step toward peace.

So now, I live and work by this quiet mantra:

“When the heart speaks, listen. When it breaks, honor it. When it begins to beat stronger again—follow it.”

That is how I’ve learned to survive.

That is how I help others begin to thrive.

Yet, still, our healing came with sorrow.