Distressed in Disney

An oxymoron, how can one be distressed in Disney World?   On October 8th 1999, what should have been one of the most exciting days of my life turned out to be one of the worst.   My family and I were on our way to our first Disney vacation ever. On the flight down, I felt a sharp pain in my neck.  I thought it was just the usual pain I get occasionally, I was 39 and healthy, what could be wrong?  I blew it off, and took some ibuprofen.

We arrived in Disney and while walking around Animal Kingdom the first day, I started to feel my left arm going numb.  I asked my wife, a cardiac nurse, “what does a heart attack feel like”?   I had no other heart attack symptoms so we chalked it up to my history of neck problems and pinched nerves.   We went to bed about 9:30 pm, but by 10:30 pm nature called and I was restless so I went to the bathroom.   While walking back to bed, my legs were giving out and my arm was twitching.  I woke my wife and she called 911.  We were taken to Celebration Hospital, a very small community hospital.    After a couple of hours my condition worsened, the weakness was consuming my body and I was having trouble breathing. By 2am I was intubated, on a ventilator and airlifted  to Florida Hospital Center’s Neuro Intensive Care Unit in Orlando.

I arrived at Florida Hospital Center a quadriplegic and ventilator dependent.  Many tests were done such as blood work, lumbar puncture, CT Scan, and MRI’s.   The doctors narrowed it down to Guillain–Barré syndrome or Transverse Myelitis. The MRI confirmed that it was Transverse Myelitis. We had no idea. Transverse what, never heard of it?  Those words soon became part of our everyday language.

The area of spinal cord damage was C2-C4 – think Christopher Reeve – his spinal cord injury was in the same region.   I was treated with high doses of IV steroids and five days of intravenous immune globulin (IVIG) in hopes of calming the immune system and decreasing the damage.  At that time there was no evidence to show that steroids helped, but it didn’t hurt so it was worth a shot.   After about three days of treatment, my wife noticed that I was trying to take breaths on my own and pointed it out to the nurse.  By the next day, I was breathing on my own without the ventilator, but I was still completely paralyzed from my chest down.   We got the definitive diagnosis of transverse myelitis on the sixth day.  We knew I was in for a long hospital/rehab stay, so we started to work on getting me transferred to Johns Hopkins Hospital.  After about a week at Florida Hospital Center I was transported to Johns Hopkins by air ambulance.

At this time, we were just starting to learn a little about transverse myelitis, and had no idea that Johns Hopkins opened a dedicated center to treat patients with transverse myelitis just a few months before this.   In fact we became aware of this when my sister-in-law did an internet search, and found the Transverse Myelitis Association and the JHTMC online.   I was still paralyzed from the chest down but at least I was off the vent and in my home city where I could see my kids.  I was treated at Hopkins for about a week and then was sent to Good Samaritan Rehab.

I was in rehab for about five weeks and in that time I worked hard in PT and OT.  I went from sitting in a chair for at most an hour before becoming exhausted to walking with two Loft strand crutches.   I continued with PT and OT for another 10 months as an outpatient and continued to make gains in motor function for a while after my discharge from rehab.   At this point I live with motor, sensory, bladder and bowel dysfunction, but I am independent, drive, manage a home, travel, raise my kids, assist with elderly parents and overall live a very full life.

One of the things I miss is being one of the guys at work.  I was never able to go back to my job, and the company didn’t have another position to accommodate my physical needs or part time status.   I work hard at maintaining as much mobility as possible by going to a pool and doing exercises and swimming daily and intermittent physical therapy tune ups at the International Center for Spinal Cord Injury at Kennedy Krieger.  I am the leader of SRNA support group of Maryland and am forever grateful for the information, support, comfort and companionship SRNA has provided through this whole process.

~ Alan Connor, One of the organizers of the Maryland Walk-Run-N-Roll Awareness Campaign. Support his efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!