October 29th, 1986

Pic by LJM

As I walked down the hallway towards the shower, I felt a sharp pain in my right upper arm. It was a school day and my initial concern was that I wouldn’t be able to carry my books between classes that day. I was in 8th grade.

Instead of taking a shower, I went downstairs to let my mom know about the pain. I attempted to eat a bowl of cereal, but the pain was getting increasingly worse. It had traveled up my arm into my shoulder. I remember standing in the family room with my arms up, attempting to somehow alleviate the pain. I was crying from the intensity of it, it felt like I was being stabbed.

My mom, obviously concerned and confused, suggested that I take a hot shower, hoping it was a muscle spasm or something muscle-related. I took a scolding hot shower in my parents’ standup shower — the pain seemed to subside. After the shower, she applied some Ben Gay to my shoulders and neck and suggested I lie down on their bed and relax. The pain was essentially gone and I was able to relax and fall asleep.

As I woke up, I opened my eyes and found myself in the same position that I’d fallen asleep in — on my back. I was comfortable and the pain was gone. As I attempted to get out of the bed, my right arm shot uncontrollably into the air and then quickly back down — bouncing twice on the mattress. I remember feeling the true weight of my own arm.

That was the last thing that I felt before realizing that I was completely paralyzed from the chest down.

Mom! Mom! I can’t move!

Time was moving in what seemed to be slow motion. After yelling for my mom, I started to have these very lucid visions of myself in a wheelchair. It was yellow.

I remember thinking, “Everything is going to be okay, I’ll just use a wheelchair.”

I was later told by someone that these thoughts were caused by my body going into shock and that’s how my brain was interpreting the situation.

My mom ran into the room and I again stated that I couldn’t move. In a panic, she picked up the phone and called her good friend Denise and told her what was happening. The phone call lasted about 15 seconds before she hung up and dialed 911.

The paramedics showed up four minutes later, which is amazing because the rescue squad was over a mile away in a different town. I guess the ambulance had a nice big engine and some loud sirens! A police officer showed up in a similar timeframe. I still have the letters that my dad typed to thank everyone involved.

When the paramedics arrived, they moved swiftly and asked me a lot of questions that I don’t recall. They inserted an oxygen tube into my nose and remember how good the cool air felt rushing into me. They explained that they were going to transfer me onto a wooden board and carry me out. I suddenly grew concerned that these professionally trained, strong adults were going to drop my 80-pound body while going down the stairs… they didn’t drop me.

As they carried me out of the house, I remember smelling the cool, crisp fall air and looking up at the blue sky and puffy clouds. I don’t recall much of the ambulance ride beside them driving fast through the windy roads and getting to the hospital in about 8 minutes instead of the usual 15.

When I arrived at the emergency room, it was chaotic. I was swarmed by doctors, nurses and techs. I was poked and prodded but couldn’t feel anything.

Questions were asked:

Did you take any drugs?
No.

What were you doing yesterday?
Skateboarding.

Did you fall?
Yes, but it wasn’t bad, I just kinda rolled onto my back.

They had no idea what was wrong with me.

Luckily the hospital had a CT scanner. I remember watching the red lights on the top of the scanner — they reminded me of KITT from Knight Rider.

The results from the CT scan showed an excessive amount of blood in and around my neck and cervical spinal column — blood that is not supposed to be there.

My dad had arrived at the ER and I remember him leaning over to tell me that they were going to take me into surgery to find out what was wrong with me. I calmly told him that was “fine” and remember thinking “…whatever gets me out of this situation.” I was running on a combination of shock and 13-year-old naivety. They were about to perform emergency exploratory spinal surgery.

I later found out that I had been listed as being in “grave condition” which is as bad as it sounds, it’s the step below critical.

The neurosurgeon was located in Trenton, which is about 45 minutes south of the hospital. A helicopter was unavailable, so they drove, escorted by two New Jersey State Troopers. The doctor later compared the ride to something out of The French Connection to my dad.

They rolled me into the operating room. It was cold and the lights were bright. The anesthesiologist put the mask over my face and told me to count back from 10. I didn’t make it to 9.

The surgery lasted just under four hours. Blood had somehow leaked into my spinal column. With nowhere to go, the spinal column continued to fill with blood, causing severe nerve compression and essentially shutting down my entire body from the neck down. They performed a spinal laminectomy, which is where they temporarily remove one of the vertebrae (c3) and released the blood from my spinal column. I had four units of blood transfused. While they were never able to define why this happened, they did define it as an arteriovenous malformation (AVM).

When I woke up in the recovery room, I had limited use of my right arm and was able to wiggle my toes on my right foot. When asked how I was feeling, I told them I was hungry. They brought me a cheeseburger, which I ate in literally four bites. The surgery was considered a success, but how much I would recover was still very much unknown.

I spent nine days in the hospital. I was eventually able to use a wheelchair, but because my arms were still weak, I kicked around like I was riding a skateboard. After about a week, I was able to take a few steps while using the horizontal bars in the physical therapy room. My parents cried.

After being discharged, I was relocated to the Children’s Seashore House in Atlantic City, New Jersey. The first night at the hospital a doctor told my parents that I would most likely never walk again.

I would spend the next two and a half months learning how to eat with a fork, tie my shoes and eventually, walk again.

Getting to know the other kids was an eye-opening experience, to say the least. The patients ranged from kids who had been involved in accidents to kids diagnosed with lifelong chronic illnesses. Two of the girls closest to my age couldn’t grasp the concept that I was living a “normal” life a few months prior. They were diagnosed with extreme cases of Juvenile Diabetes and had spent most of their lives in and out of hospitals. Gaining massive amounts of life perspective at age 13 is an understatement.

Perks of the Children’s Seashore House:

• My bed faced the window with a direct view of the Atlantic Ocean
• The food was really good, the first day I was there I ordered a cheesesteak; we also helped cook dinner once a week as part of our therapeutic process
• Because we were in Atlantic City, Bally’s donated video games that I was allowed to play as part of my occupational therapy. The only rule was to alternate hands with the joystick. I got really good at Ms. Pac Man, both left and right-handed.
• I participated in school classes so that I wouldn’t be held back. The work was really easy and I got straight A’s, which helped my GPA once I returned to my regular school

I was discharged from the Children’s Seashore House on December 23rd. I honestly could have used more time there, but I really wanted to be home with my family for Christmas. I received a ridiculous amount of gifts that year.

I returned to school after Christmas break. Similar to being discharged from the hospital, I probably could have used more time, but I was really concerned about being able to graduate and move on to high school with my friends, so I pushed myself to get back to life being as “normal” as it could be.

I continued to physically recover over the next few months, gaining my strength back and putting on some of the weight that I had lost. I happily graduated from 8th grade and went on to high school.

I am extremely lucky to have walked away (figuratively and literally) from this experience without a lot more damage. I do have permanent sensation loss (about 50%) on my left side, mainly my leg. I can’t tell the difference between hot and cold if I dip my foot into water. I also have muscular atrophy on my right side, again mainly in my leg. My dominant side is my right, but my left is stronger. I’m all mixed up. Oh, and my legs totally freak out some mornings when I wake up and stretch them, which is apparently common with nerve damage.

I’m not sure I can say that I ever fully recovered “mentally” from the experience. I’m don’t think it’s possible based on the gravity of it all, but I’m okay with that. I see it in a more positive light. The experience has given me a massive amount of perspective on life and taught me not to take things for granted. I was fortunate to be at an age where I could understand these things and continue to carry those values throughout my life. I also believe that it’s helped me get through my more recent issues of being diagnosed with Neurofibromatosis Type 2 and becoming deaf. Both situations are different for a lot of different reasons, but as they say, this wasn’t my first rodeo.

Additional Notes:

The Mets won the World Series the night before this happened. I’m more of a Yankee fan, but it was cool to have a local team win

The day following the surgery, I was mainly pissed that I was going to miss Mischief Night and Halloween

I ran a five-minute mile less than a year after the surgery, so fuck off to that doctor who told my parents I’d never walk again