Today’s “Fantastic Friday” RRP story is a feature on Morgan Toll. I feel such a special connection to Morgan as we are both from the same area, have a story that really isn’t that far apart, and I know pieces of her family….she’s special and I hope you enjoy her story. This is Morgan in her own words and I am so thankful she agreed to be the first story! She’s amazing and it shines through!
I was eight months old when I was diagnosed with RRP, from then on, until I was around 12
years old, I had over 200 surgeries. The doctors said I had one of the worst cases they
had ever seen, having to go into have surgery every week, as if it were routine. I was young
and because I had grown up this way, it was all I ever knew. I never saw my illness as a
tragedy; I saw it as my life because I never knew anything different.
I’ve heard stories from my parents about how I would pass out, turn blue, and have to be
rushed in an ambulance for immediate surgery, or how the hospital once didn’t have the laser
to remove the papillomas, so I was put in an induced coma for a week to stay alive. Now
when I hear those things, it tears me apart because I can not even imagine how my parents
must have felt, feeling like they were losing their baby girl to this awful disease. I can tell
you that I remember the grape smell of the mask right before surgery, the toy room, and my
anesthesiologist that would perform magic tricks to calm me down. I remember my mom
and dad crushing up the Popsicle for me after surgery so I could eat it. I remember them
crying right before I was being pushed down long hallways as I spoke to my doctors, and
then, everything going fuzzy right before I fell asleep. When I was six, I went in for a check
up and they said I would go into cardiac arrest because not enough oxygen was getting to my
heart. I had to have an immediate trach put in. I remember them bringing in a puppet to
explain my surgery, but I didn’t really understand. Afterwords, I stayed in the hospital which
seemed like forever.
The trach, for me, is what set me apart and made me start realizing things were different. I
wasn’t allowed to do certain things that I used to be able to do, like going swimming or
taking showers, or playing in the sand. Every night I was hooked up to multiple upon
multiple machines. I remember it scared a few of my friends, and they didn’t really want to
sleep over anymore. I knew I was different and I didn’t want it anymore.
When I was ten, I saw a doctor in Colorado that began to change everything for me. He
started injecting the mumps virus into the papillomas which began making them disappear. I
also I had a rib graft done, where they took a piece of my rib and put it in my throat to
reconstruct the airway.
Soon after, the trach finally came out.
It was a miracle. I, one of the worst cases the doctors had ever seen, was being put into
remission. I could finally be a “normal” kid.
Even though the disease had disappeared from my life, it seemed to follow me.
My voice became the only concern in my life.
The constant questions and people thinking that I was sick became so ordinary but
the number one thing it has held me back from, is the one thing I love most, acting.
From the time I was small, I knew in my heart that being on stage was all I ever wanted to
be. Which is really ironic, given the circumstances I was in, so of course, everyone always
told me that it was not possible. In highschool, I felt like I had given up hope; I started to
believe everyone around me and believed that I couldn’t do it. So I pretended that it didn’t
bother me, that I never wanted to act, that I wanted to be behind the scenes.
I watched as people around me got parts, didn’t memorize their lines and fooled around. I
stayed behind the scenes, watching as others did what I wanted to do most of all. Then when
I went to college, I took an acting class which was required.
We were all paired into two and had to do a scene. Mine was a scene from the play “The
Beautiful People” and it was dramatic and beautiful, but I was terrified. I didnt want to act in
front of anyone, I didn’t want people to make fun of my voice.
Once I had performed the scene though, I was hooked again. I knew I couldn’t give this up,
not anymore. I became a part of an acting group in the school, and began performing in play
after play, and taking as many classes as I could, working as hard as I could, wanting to learn
as much as possible about this wonderful craft that I love.
People were still telling me that I couldnt do it, telling me the only characters I could play
were sick ones, but I stayed strong and refused to listen.
I didn’t let this disease I once had take control of me again.
In my third year in college, I auditioned for the play “Fools” and I got the lead. It was the
first time I felt like I was getting the chance to prove that I could do this. Not just to people,
but to myself. Members of the acting group tried to kick me out of the play, they said I
couldn’t be the lead because no one would hear me, I fought back again and even more.
The first night of the play, in this small theater, the audience was packed. People were sitting
on the stairs and some had to be sent away, it was crazy. I was so nervous, but felt this
energy inside me that bursted out and led me throughout the performance.
When it was over, everyone began to applaud and stand up. My eyes started tearing up. I did
it, I stayed strong and proved that I can do this, and it was amazing.
Nobody could understand how much this silly play meant to me, and I would hold onto that
feeling for the rest of my life.
Then, last year, things started to change again. I started feeling shortness of breath and my
voice was getting weaker than usual.
I went in to see a doctor and wondered if there was any way I could get my voice fixed, after
being in remission for so long.
The doctor told me that my airway was narrow, the size of a three year olds, and that there
was no way to ever fix my voice. That I would never speak normally again.
It was a lot to take in. It was a hope I had in the back of my mind that very quickly started to
I started seeing more doctors because of my airway. No one understood how it was getting
more narrow all of a sudden. The scar tissue, due to all the surgeries I had, was somehow
beginning to grow. I worried about having surgery, worried the papillomas would come
back if it was messed with, worried I would lose my voice all together.
I started going to the emergency room because I was feeling more shortness of breath. Soon
after, I decided to go to a doctor in Boston who chose to remove part of my vocal cord and
open my airway more. The surgery had successful results, but it did not last very long. After
I flew back to California, the scar tissue grew back, making my airway even smaller than it
was before. I became ill with pneumonia and spent three days in the ICU and on the fourth
day, I had to fly back to Boston to have another surgery. My breathing was getting worse and
worse; just getting up out of bed or walking across the room would cause me to be
completely out of breath.
Two months after my surgery in Boston, I went in for a check up at Johns Hopkins in
Baltimore and they told me I would have to have an immediate awake tracheotomy and I
would not be permitted to leave the hospital without one.
My whole world seemed to shatter in that moment. I was so scared, it was happening so fast
and I felt so alone. I couldn’t believe this was happening all over again and I didn’t
understand why, yet I knew it had to be done. Today I still have the trach, and my doctors are trying to figure a way for it to be removed eventually. I currently have zero vocal cords but I still have my raspy voice.
Despite all that though, I am okay. I am actually more okay now than I ever have been. I can
breathe, and let me tell you, people can really take advantage of the whole breathing thing
because you don’t know how amazing it feels to breathe that very first deep breath for the
first time after not being able to breathe at all.
I have come to terms with my illness.
I know that it is all in God’s plan and no matter what happens, it will all be ok.
A lot of people might think that I am weaker because of all of this, but i feel so strong.
I am strong because I’ve spent my whole life battling this,
I am strong because I refuse to let someone tell me that I am less than because of it,
I am strong because I refuse to give up,
I am strong because every single day I am so thankful to be alive and breathing.
I am strong because I have God in my life, right beside me everyday, telling me that it’s
going to be okay.
I of course have my days where my heart breaks a little because of the things this illness still
holds me back from, knowing I may never be on that stage again. But what keeps me
together is that strength, the strength that tells me that no matter what, I am never going to
That’s what I try and share with everyone. I want everyone out there to know, anyone with a
disability, an illness, or a feeling like you are less than, I want you to know that you are more
than you could ever imagine. You are more.
Normal is Boring!