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How My Scars Act as My Survival Guide Through Life

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“Holly! This stuff would be perfect for you!” one of my girlfriends said, nearly spilling her wine as she tossed a bottle of lotion my way. A bunch of us were enjoying a girl’s night, some time away from our kids. I squinted to read the small print on the label. Apparently, this lotion magically faded even the most horrible of scars.

I had plenty of those. The most obvious, a small circular scar that looked like a cigarette burn on my neck. Years before, weeks after I had my baby, I nearly died from complications of a rare disease called Guillain-Barre syndrome (GBS) — an autoimmune disorder where your own body mistakenly attacks your nerves, paralyzing you. Most people have never heard of GBS, but two out of every one hundred thousand people are diagnosed with it each year. “Bachelorette” contestant JP Rosenbaum and Dallas Cowboy’s center Travis Fredrick’s mild cases of GBS brought recent media attention to this rare disorder. Though some cases are mild, about 30 percent of patients go into respiratory failure within the first week of symptoms, requiring mechanical ventilation to keep them alive. I was on life support within 72 hours of my diagnosis. The scar was from the breathing tube in my throat.

Though my daughter, who I could not care for as an infant, was now an energetic second grader and I was a fitness enthusiast in the best shape of my life, the vivid memories of being in the ICU hadn’t faded. The constant beeping from the ventilator beside my bed. The sensation of air pushing its way from the machine through my lungs. The throbbing muscle aches as I tried to move my paralyzed body. I was on so many painkillers — so severely depressed that I felt that life wasn’t worth living.

“Just…let…me…go,” I mouthed to my mom, as my family sat next to my bed day after day. Every morning my husband brought my daughter to the hospital to be with me.

“You’re going to get better,” mom sobbed. The paralysis eventually fades in GBS — most patients recover, though some are left with permanent disabilities. A small percentage die from complications. I shook my head. She’d said that to me so many times in the two months I’d been in the hospital. I struggled with excruciating pain that made me feel like my nerves were on fire and relentless vomiting from all the medications I was on. Paralyzed from the neck down, trapped in my own body, I couldn’t even hold my daughter in my arms. No matter how hard I tried, my body never moved.

I wasn’t getting better.

“Take me off life support,” I pleaded.

“I can’t do that,” my mom said through tears. I knew she would never give up on me.

“Then get my respiratory therapist,” I mouthed. The person in charge of my breathing.

“I want a DNR,” I asserted to the respiratory therapist when she asked what I needed. When I was first admitted to the ICU, I signed a form stating if I stopped breathing, they’d perform CPR to save my life. A DNR, or a “do not resuscitate,” is an order for them to respect my wishes and let me go.

“Please!” I cried. “Turn off the ventilator and let me die.” My therapist grabbed my hand.

“You can’t give up, Holly. You’ve come so far. And you have a baby that needs you.” She choked back tears. I kept begging. She held my hand tight and told me to keep fighting.

The truth is, I never wanted to die. I just wanted the pain to end. I didn’t know how I could make it through another minute of that nightmare.

Six years later, sitting on that couch with my girlfriends, chatting about our kids over wine, it was still hard to believe I survived. From breathing on my own, learning how to walk again to a complete recovery, it was as if my time in ICU never happened — if it weren’t for all the scars. In addition to the scar on my neck, a routine procedure meant to deliver medicine had ruptured my femoral artery; I almost bled to death, which left two horrific scars on my inner thigh and down my torso. I had a scar from the feeding tube in my stomach, and another from the IV tube in my arm. At one point, I wasn’t sure I’d ever accept my scar riddled body.

But that was years ago.

“Nah, I’m good,” I said with a smile and passed the diminishing lotion back to my friend.

Not only do I accept the scars on my body, I embrace them. They are as much a part of me as the dimple on the left side of my face or the unique blue and yellow color in my eyes.

My scars are my guidebook to survival through life — from divorce, a new home, to relationship, work, and parenting challenges.

My scars are a constant reminder that life tried to break me, but I fought back.

And I survived.

This story originally appeared on Holly After GBS

Originally published: January 13, 2020
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