I Never Got To Apologize To My Sister Before She Died. Then I Found A Life-Changing Slip Of Paper In Her Desk. - HuffPost

“What matters is how we live and love and how we spend our dash.” — Linda Ellis I last saw my older sister Michelle in the ICU. Her face was chalk white. Her eyes were listless. The thumping of my heart drowned out all the beeping monitors she was hooked up to. “Did you ever think it would come to this?” she asked me. I didn’t answer her, probably because I was in shock, but, no, I never thought it would come to that. Michelle and I were diagnosed with cystic fibrosis when we were babies. We were three years apart in age and weren’t supposed to survive beyond elementary school. The author (left), age 2, and her sister Michelle, age 5. Courtesy of Lisa ZaccariaAs children, we were healthier than most people with CF. But as our disease progressed into adulthood, we spent more time in the hospital than we did at home, trying to keep our lungs healthy when bacteria wanted to destroy them. Still, we defied the odds and beat every statistic. However, this time was different for Michelle. Thick mucus blocked her airways, forcing her to breathe in ragged gasps despite receiving the highest oxygen levels from a machine by her bed. As Michelle was dying, I couldn’t help but think about how she lived her life as fully as she could. I was scared to get my learner’s permit, but Michelle got it the day she turned 16. I was afraid to fly to visit my grandmother in Florida, but Michelle often did. It seemed impossible that my sister was dying. She was so full of life. When Michelle’s body was too exhausted to breathe on its own, she needed to go on a ventilator and was given a 50% chance of surviving. My grandmother told her she’d be OK, but Michelle knew better. “You need to accept that I may not survive this,” she told us. “It’s a win/win situation. If I make it, I will be with all of you. If I don’t, I will be with family in heaven who died before me.” The author (right) with her sister Michelle. "This was at my high school graduation party in 1996," the author writes. "I was 18 and Michelle was 21."Courtesy of Lisa ZaccariaMichelle passed four days later at the age of 35, two years shy of the predicted life expectancy of 37 we received as children. She had accepted her fate rather than trying to fight a losing battle. There were so many things that were left unsaid, but it’s the questions I can’t ask her anymore that haunt me the most — especially did she forgive me for being cruel to her? I still desperately need answers. A couple of years before she died, she had sinus surgery, a procedure many people with CF undergo. Before her surgery, Michelle asked my mother and grandmother to be at the hospital with her. She was never afraid to show her vulnerability. Instead, she drew strength from being with the two people she was the closest to in her life. “It’s just sinus surgery. It’s no big deal,” I shouted angrily. “When are you going to grow up?” “You’re so mean,” her voice quivered. She bowed her head, walked quickly to her room and slammed the door. She didn’t know that beneath my tough exterior, I was worried for her, but I was more concerned about myself. I didn’t want her to make a big deal about sinus surgery because when it was my turn to have it, I wouldn’t make a big deal of it either. But it was a big deal. With CF, everything was more complicated, more serious and the risk more ominous. I never got to tell her how sorry I was for being unkind because I was frightened. Fear followed me like a shadow. With a death sentence always looming, I’ve spent most of my life thinking I was going to die. CF, diabetes and a host of other medical complications headlined my life. What was I going to get diagnosed with next? If I had a headache, I was convinced it was a brain tumor. If I had a bruise, I was sure it was a sign of leukemia. If I was tired, I just knew I had cancer. These thoughts gave me paralyzing anxiety that stopped me from truly living. A week after Michelle passed, I stood in her room looking through her things. I was still afraid to touch the shirts and pants hanging in her closet. She always knew whenever I borrowed them, even if I returned them exactly as I had found them. “Lisa!” She’d yell at me. “Why did you take my shirt without asking?” “Because if I asked, you would’ve said no.” I walked to her desk and smiled at the picture of her and her cocker spaniel, Jake. I turned and looked at him lying on Michelle’s chair, gazing intently out the window. I told myself he was bird-watching, but I knew he was waiting for his owner to pull up in her white Honda. The author's sister Michelle with her dog, Jake. "This was taken in 2009, one year before she passed away at 35," the author writes.Courtesy of Lisa ZaccariaI opened her desk drawer. There was nothing there but a neatly folded piece of paper. That’s weird, I thought. The other drawers were filled with craft supplies for her Cricut machine, which she used to make her own greeting cards. I unfolded the paper and found a poem by Linda Ellis titled “The Dash.” The verses referred to the dash on a tombstone between someone’s birth date and death date, and how, most importantly, that little line represents how they lived in between those years. As I read the lines, the last stanza of the poem awakened something in me: Would you be proud of the things they say I wasn’t proud of the way I was spending my dash. I wasn’t living, I was merely existing. At 32, I never truly lived because I was waiting to die. I was convinced that Michelle left that poem for me to find. On the speedboat in the middle of Key Largo Bay, I watched the technician prepare the parasail swing. The sun shone down on the vast, murky water that surrounded me. My hand gripped my chest, then the back of my neck, and finally landed on my head like it had a life of its own. “Are you sure this is safe?” I asked the technician. “How high will I be going?” The yellow smiley face canopy did little to calm my nerves. “About 400 feet. We have a 99.9% safety rating. You’re in good hands,” he replied a little too cheerfully. With my luck, I would be that 0.1% who fell, I thought. I chased the fear away because it had been chasing me for far too long. I reminded myself that “The Dash” poem was tucked safely in my pocket. I stood near the swing as the technician strapped me in a body harness. My hands gripped the rope, and my knuckles turned white. “You ready to soar? In five, four, three, two ...” “No, wait,” I screamed and closed my eyes. My mind was like a skipping record, jumping forward, overdramatizing worst-case scenarios. But I came this far. I conquered my fear of flying to be here, and now I couldn’t back out. I opened my eyes, looked at the technician and nodded my head. He lifted me from the deck of the boat. My dangling legs began to stiffen. As I rose higher and higher everything below me became smaller and smaller. I could almost touch the clouds and no longer heard the boat’s engine. The technician wouldn’t even hear me if I screamed. I took deep breaths and finally relaxed my grip. Weightless, like a butterfly, I welcomed the quiet calmness. The author parasailing in Key Largo Bay, Florida, in 2018.Courtesy of Lisa ZaccariaMichelle passed away 16 years ago. Before her death, I had built a cocoon, stuck myself inside, and was afraid to break free. It was a failed existence, and I missed out on so many things. After she died and I found the poem, I was propelled by adventure, made bold choices and took risks. Doctors tell me that the median age of survival for someone with CF is now 66 years, thanks to new life-saving medications. However, a cold, flu, or COVID could affect my lungs and jeopardize my life. Regardless, I am going to continue to move forward and live my life without regret. That is what living is all about. And even though Michelle wasn’t physically beside me, I believed her spirit was flying with me above that bay. I imagined her looking at me and smiling proudly, as I lived my dash — not only for her, but for myself too. And I smiled back. The author in Myrtle Beach, South Carolina, in 2023.Courtesy of Lisa ZaccariaLisa Zaccaria is a writer and a founding member of Prose Playground Writing Community. She is working on a memoir about what it’s like living with multiple chronic illnesses and defying the odds. Lisa lives outside of Boston and is 48 years old, which is 36 years longer than doctors first predicted she’d live. Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch at pitch@huffpost.com. 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