Living and Loving: Reflecting on My Sister’s Journey

“What matters is how we live and love and how we spend our dash.” — Linda Ellis

The last time I saw my older sister, Michelle, she was in the ICU. Her face looked pale, almost chalky, and her eyes were empty. My heart raced, drowning out the sounds of the beeping monitors around her.

“Did you ever think it would come to this?” she questioned me.

I don’t think I replied—maybe I was too shocked to respond. But honestly, I never expected it to end like this.

Both Michelle and I were diagnosed with cystic fibrosis as babies. A mere three years apart, we weren’t expected to live past elementary school.

As kids, we were, surprisingly, healthier than many others with CF. Yet, as we moved into adulthood, we found ourselves in the hospital more often than not, battling to keep our lungs functioning while bacteria threatened them. Still, we defied every expectation and beat the odds.

This time was different for Michelle, though. Thick mucus blocked her airways, and she struggled for each breath, even with the highest levels of oxygen flowing from the machine beside her.

As I watched her fade, I reflected on how fully she had embraced life. I was terrified of getting my learner’s permit, but not her—she got it the moment she turned 16. I was anxious about flying to visit our grandmother in Florida, but Michelle went without hesitation.

It felt surreal that my sister, who was so vibrant, was slipping away.

When Michelle could no longer breathe on her own, she was put on a ventilator, given only a 50% chance of survival. My grandmother offered reassurances, but deep down, Michelle knew the truth.

“You need to accept that I may not survive this,” she said calmly. “It’s a win/win situation. If I make it, I’m with you all. If I don’t, I’ll be with the family who passed before me.”

Just four days later, at the age of 35, Michelle passed away—two years shy of the life expectancy we had been given as children. In the end, she chose acceptance over a fruitless fight.

So much was left unsaid, but I often find myself haunted by the unasked questions—especially if she forgave me for being unkind to her. I crave those answers.

A couple of years prior, she had surgery for her sinuses, a common procedure for those with CF. She wanted my mother and grandmother with her in the hospital. Michelle wasn’t afraid to show vulnerability; she found strength in being with those she loved most.

“It’s just sinus surgery. It’s not a big deal,” I had snapped. “When are you going to grow up?”

“You’re so mean,” she replied, her voice trembling as she retreated to her room and slammed the door.

She had no idea that beneath my tough exterior, I was worried for her. I didn’t want her to make a fuss over her surgery because, if it were me, I wouldn’t have either. But with CF, every little thing was a big deal, often more complicated and serious. I never got to apologize to her for my harsh words; they still weigh on me.

Fear has been a constant companion for me. With a cloud of impending mortality looming over my life, I often felt like I was living on borrowed time. Cystic fibrosis, diabetes, and other medical issues have always been my reality. A headache would send me spiraling into thoughts of a brain tumor; a bruise made me suspect leukemia. It was paralyzing, really—this anxiety kept me from truly engaging with life.

A week after Michelle’s death, I stood in her room, hesitant to touch her clothes. She always knew when I borrowed something, even if I returned it in perfect condition.

“Lisa!” she would yell, “Why did you take my shirt without asking?”

“Because if I had asked, you would’ve said no.”

As I approached her desk, I smiled at the picture of her and her dog, Jake. He was lying on Michelle’s chair, looking out the window. I told myself he was bird watching, although I knew he was likely waiting for her to return in her white Honda.

Peering into her desk drawer, I found only a single folded piece of paper. That struck me as odd. Most of the other drawers were filled with craft supplies. Upon unfolding the paper, I found a poem by Linda Ellis called “The Dash.” It talked about the line between birth and death on a tombstone, emphasizing how important it is to consider what that dash represents.

In the final stanza, I was hit with a powerful realization:

Would you be proud of the things they say

About how you spent YOUR dash?

To be honest, I didn’t feel proud of how I was living mine. I was merely existing, not really living. At 32, I realized I had spent too much time waiting for the end. I began to think Michelle had left that poem for me.

It was clear to me that my life had to change.

On a speedboat in Key Largo, I watched as the technician prepared the parasail swing. The sun was shining brightly on the murky waters, yet my anxiety was palpable. I felt my hands grip my chest then my neck before finally resting on my head.

“Are you sure this is safe?” I asked, nervously. “How high will I go?”

The bright yellow umbrella offered little comfort.

“About 400 feet. We have a 99.9% safety rating. You’re in good hands,” he replied, perhaps a bit too cheerfully.

With my luck, I’d be that 0.1% who fell, I thought. Yet, I was determined to shoo away that fear, which had shadowed me for far too long. The poem nestled safely in my pocket reminded me of what I needed to do.

As the technician strapped me into the harness, my grip tightened on the rope, my knuckles pale.

“Ready to soar? In five, four, three, two …”

“Wait, no!” I shouted, closing my eyes. My mind was racing, spiraling into worst-case scenarios. Yet I had come so far; I had conquered my fears to be here. I couldn’t turn back now.

I opened my eyes, looked at the technician, and nodded. He lifted me from the deck of the boat, and I felt my legs stiffen.

Please, I thought, don’t let me fall.

As I soared higher, everything below shrank into oblivion. I could almost touch the clouds, and suddenly, the boat’s engine noise faded. I took deep breaths, relaxing my grip. It was like being weightless, and for the first time, I embraced the peacefulness.

Now, Michelle has been gone for 16 years. Before she left, I had wrapped myself in a cocoon of fear and hesitation. It was a wasted existence, one that kept me from truly living. After her death and finding that poem, I felt a surge of adventure, making bold choices and taking risks.

Doctors now tell me the median survival age for someone with CF is 66 years, thanks to new treatments. Still, a cold, flu, or COVID can threaten my lungs. Regardless, I intend to move ahead, living without regrets. That’s what life should be about.

Even though Michelle isn’t physically with me, I believe her spirit is soaring above that bay. I imagine her watching over me, smiling with pride, as I embrace my dash—for both her sake and mine. And I can’t help but smile back.