Fuzzy

At age nine three words were branded into my being, Stevens-Johnson Syndrome (SJS). SJS is a severe life-threatening adverse drug reaction. My SJS was triggered by a lethal mix of medications after being bit by a very angry rattlesnake. It was not the rattlesnake’s fault. Neither one of us wanted to be there. Our encounter was not by accident. It was purposeful. That story is for another day.

When I was nine the fatality rate from SJS was 75%. Those who survived the initial onset were treated in burn units because SJS burns you alive from the inside out. When I was nine, 75% of my body was covered in second and third-degree burns. Yes, I looked like a monster.

My first introduction to Stevens-Johnson Syndrome was my father's voice, "Penny open your eyes, it’s time to wake up." 

I was raised in a family that you did what your parents told you to do, so I tried with all my might to do as my father said. My body was cocooned in gauze and my skin was on fire. I was on fire. My throat, my nose, my ears were raw and dry and small. 

My eyes, my eyes were on fire. 

My father repeated a little sterner, "Penny, open your eyes, it’s time to wake up."

With every ounce of strength, I could muster in my 9-year-old shattered body I tried. I forced my heavy scorched eye lids open. I cried out, but no one heard me as loud erupting applause and shouts went up all around me. I began to cry, but I had no tears. SJS permanently erased all my tears.

You see, the reason for all their joy, as I had spent a week in a drug-induced coma because a nine-year-old child could not endure the pain my body was going through. The huge medical team caring for me were certain that if, not when I woke I would have severe brain damage from the extremely high fever I was running. I would be mute, deaf, and blind. They were also certain I would spend my life on a breathing respirator and feeding tube. I had just been through a fire. All the soft tissue in my body was singed or burnt and would heal into deep scar tissue. I had been through a fire, though no flames had touched me.

My father was a blur, but I knew he was there. My father asked me, "Penny, what do you see?" 

I replied in a whisper because that is all that my parched throat would allow, "Fuzzy." 

Another uproar of laughter and cheers erupted around me. 

My father's voice boomed, "Fuzzy? She wants to name this monkey Fuzzy!" 

Little did I know he was holding a stuffed monkey in front of my face. Fuzzy became and remains one of my closest friends.

You see when I woke and said that one small whispered word, "Fuzzy", it was cause for great celebration. I could hear. I could speak. I could understand what my father was saying. I could see, or so they thought. Fuzzy understood that I was not referring to him, but he kept his mouth shut and accepted the name. 

The three words that I was branded with, Stevens-Johnson Syndrome became my new roadmap. I was told I would die if I did not follow doctor’s orders. I took huge amounts of narcotics for the pain. I had ointments and drops and salves and inhalers and …. I went from being a tom-boy who spent the majority of my life outside to being a doped-up couch potato.  I could not exert myself on any level. My heart and lungs could not expand with all the scar tissue around them. As a kid, I envisioned that angry rattlesnake coiled around my heart and lungs keeping them small and tight.

When I was 10, I was finally allowed to return to school. The kids asked me the same question my father had asked me in the ICU Burn Unit, “Penny what do you see?” For the first time, I began looking around me. Yes, everything was fuzzy, but if I focused on what I could see and not on what I couldn’t see I found I could see a lot better than what the doctors told me.  I discovered I could still pitch in the baseball games if I focused on the contrast between the catcher’s mitt and the white shirt he wore. The trouble only came when the bat made contact with the ball, so I did my best to throw strikes. 

The narcotics I was taking kept my world fuzzy and not because of my eyes. At 19 I went against doctor’s orders and spent 28 days in a rehab center to learn to live without being medicated. It was hard and it hurt a lot, but I survived. I made the choice that if my heart was going to explode or my lungs were going to implode, I would rather be standing on top a mountain, rafting a raging river, or just being the woman, I wanted to become.

My heart has not exploded, but it did have the first of many hiccups on a beautiful hike between Bear Lake and Grand Lake. I summited my first 14er after one lung collapsed which is sort of like imploding. I survived because I had incredible people around me that believed in me and pushed me when I wanted to give up. I rafted the Grand Canyon with a group of blind teenagers as their mentor even though inside I was terrified the entire trip that I would encounter another angry rattlesnake, but I did not let the fear paralyze me and keep me from a trip of a lifetime.

I even became the woman I wanted to become! I have an awesome husband and two beautiful step-daughters that I got to watch grow into amazing mothers. Yes, I am a Nana and love every second of it. I have a dream career where I get to help people who feel they are broken find a purpose and desire to be all that they want to be.

I don’t know what I did right to be standing right here tonight at this moment, but I know I did not do it alone. I had extraordinary people in my life and some of them are here tonight. You know who you are. I am not extraordinary or strong. They are the heroes of my story.

I turned 50 this year. That is extraordinary! Things are still fuzzy and it still hurts. Somedays it hurts almost too much, but every morning I wake with my father's voice in my heart, "Penny, open your eyes, it’s time to wake up." 

Guess what? I do.