At 4 years old, you never expect to end up in one of the largest hospitals in Boston, surrounded by doctors in white coats, enduring test after test, prick after prick, all in the name to walk again.
But I did.
Let me back up. 25 years ago this coming April, started out like any normal month. I was an active four-year old. An only child of two wonderful parents. I was in pre-school, and was getting ready to enter kindergarten in the fall. I loved arts and crafts, playing on the swing set, and just being a typical kid.
At 4 years old, I had learned to walk just a couple of years prior. I was starting to become more independent. I was finally becoming a big kid. I wasn’t a baby anymore. Well, at least in my mind I wasn’t.
But in a just a couple of day’s time, that all changed. I had been fighting a virus. Like every other child that spring. Except mine had ulterior motives other than to keep me off the playground.
The details surrounding my diagnosis are a bit fuzzy. I was four after all. So bear with me.
This is what I can remember from that fateful April morning, in bits and pieces.
I remember riding my bike in a circle in our small garage. I still wasn’t feeling well. I remember falling off, and landing on my knees. But I was having trouble standing, and walking. I remember my parents rushing me off to my pediatrician’s office and him asking me to walk down the hallway. My pediatrician knew what was happening just by my gait. A rare illness called Guillain-Barre Syndrome.
I remember being rushed to Boston in the back of my parent’s blue station wagon, while lying across the backseat. I can’t remember if falling off the bike and going to my pediatrician’s all happened in the same day. But I know it was pretty close together.
My parents told me when I was older that my pediatrician wanted me to go by ambulance. That I would get to Boston faster. He made a call to Mass General Hospital and they were ready for me. But my parents didn’t want me to be traumatized, or scared, by the ambulance ride. I was 4. I didn’t know what was happening to me. I just thought I was having trouble walking.
They also told me later on that they had never driven so fast. They were pulled over as they neared the city, and my dad explained what was going on to the police officer. He told them to go. To get me there as fast as they could. If I could meet that cop today, I would thank him. He didn’t keep my parents waiting for a speeding ticket, when they could have at the hospital, trying to figure out what was happening to me.
They were ready and waiting for us. They whisked me off for test after test. I remember being surrounded by doctors on a hospital bed and covered with white sheets. I was in the pediatric ICU. I underwent a spinal tap, along with multiple other tests, to see what was still working (legs, arms, etc.)
I was treated by one of the top pediatric neurologists in Boston, Eileen Ouellette. If anyone reading this knows her, I would love to get in touch with her. The last I found of her is either she is living on Nantucket now, and she was elected vice president of the American Academy of Pediatrics in 2005-2006. Without her, I don’t know what my life would be life today.
She confirmed the diagnosis. Guillian-Barre. And at the time, a very rare syndrome. So rare, in fact, that the Boston hospitals had yet to see a child with it. They consulted with doctors across the country trying to determine a course of treatment.
I spent 3 days in the pediatric ICU. I was isolated. My parent’s had to stay in a small room down the hall. I was alone. And at 4 years old, completely petrified. I remember screaming for my parents and buzzing my buzzer. I didn’t want to be myself. I was in a scary hospital, in a scary room, hooked up to all kinds of machines, and I couldn’t get out of bed without help. But after three long days, I was transferred to a regular room in the pediatric unit for the remainder of my stay.
I stayed at Mass General Hospital for a total of 7 days. 7 days of rigourous treatment. 7 days of painful therapies.
I have two very vivid happy memories from my stay. The first? Playing in the children’s playroom with other pediatric patients. All of us in wheelchairs. Laughing. And completely forgetting that we were in a hospital. Most of us probably didn’t quite understand what was happening. And the second was my bath time with one of the aids. She was just wonderful. Her and my mom wore raincoats one day, and kept adding bubble bath to the tub so I could splash and play like a normal kid.
My worst memory? My IV got infected one night. They had to rush me to an OR to replace it. Thankfully, I don’t remember too much about it. But I remember how painful it was and how scared I was.
But after 7 days, things started to get better.
I was sharing my room with a baby. I’ve always thought her name was Renee, but I could be wrong. She had spina bifida. I remember my parents being there and we had some other guests in the room, including our priest that we were very close to when I was growing up, Father Jamie. I heard her crying. I kept saying ‘Mommy, the baby is crying’ but no one heard me. So I did the only thing I could think of. I climbed out of bed, holding on to whatever I could find, and walked over to her crib.
Yes. I walked. After nearly 7 days of being essentially paralyzed, I got up from my bed and walked. It was second nature. It made sense to me. But when I turned around to say she was crying again, everyone was staring at me with their jaws on the floor.
The treatment was working. At least that’s how I remember it.
I was released from the hospital in mid-April. I can remember vividly driving into my driveway to our forsythia bushes in full bloom. And laughing because I reminded myself that my Papa could never say ‘forsythia’ so he just called them yellow bushes. At 4, I probably couldn’t say it either. I was probably trying in the car, which is what got me laughing.
Even though I was home, walker in tow, I wasn’t home free yet.
I endured weeks of intense physical therapy. Painful physical therapy. Guillian Barre is the only disease that paralyzes you from the legs up. I was lucky. Well, lucky in the sense that my legs were paralyzed and my arms had some paralysis, but nothing more than that. It can be much worse. The disease has the potential to paralyze your respiratory system and so much more.
I endured both occupational therapy and physical therapy. My therapists were sweet, caring and pushed me hard. It took some grueling swimming, stretching and every other kind of exercise to get my legs and arms working again. It was horrible. Remember I was only 4. I hadn’t built up any kind of pain tolerance yet. And being in that much pain at 4, and still being able to remember it at 28, I know it was painful.
Even when I was in pain, crying and wanting to quit because I just wanted to go home and watch TV, they pushed me to take that extra step, and to go just a little harder. They refused to let 4 year old me quit. And I’m glad they didn’t let me.
Because it worked. All of their hard work paid off.
I went for follow-ups through the years, until I was probably 6ish (again, fuzzy on the details). At the time, my doctors had told my parents they weren’t sure if I would be able to participate in sports, or normal activities. I had (and still do not have) any reflexes in my knees, elbows or ankles.
Boy did I prove them wrong. I played the gamut of sports (softball, soccer, swimming, ice skating, skiing, and so on), but didn’t find my one true love of horseback riding until I was 9. And even that was painful. I worked so hard at it because I loved it. But would come home crying and in pain. But I worked through it.
I also suffered from a pretty depleted immune system from the treatment. As I got older, it got better, but for a long time, I was always that kid sick with something. Just another side effect.
But here I am, 25 years later. Still without my reflexes, and possibly a bit more injury prone (but that’s probably just because I’m klutzy), but I’m here. Thanks to some wonderful doctors who decided that they were going to cure a little girl who contracted a rare disease that they had never seen in a child before.
Not only was I walking, and running, just a couple of short years after, but I was an athlete. A strong athlete. Proving that, you can do anything you put your mind too.
I am a Guillain-Barre survivor.
I can’t write this post and not thank my parents. I was four. I was their baby. Their only child. They were my rock through this. Alternating nights on the pull out sofa, driving me to PT, and everything else. Seriously. You are the best. I love you both. (And my family, and friends, and everyone else that was around during that trying time. I wish I remember more of the ordeal, specifically the love and prayers that surrounded me and my family.)