Lyles Forbes
Virginia TM survivor

I am a little over four years out from being paralyzed from T6 - T8.  I have wanted to pass along my story, which I consider to be a success.  Following gall bladder surgery in November, 2001, I suffered a number of post op complications that mystified me and a number of doctors at both Riverside Hospital and Mary Immaculate Hospital.  When I was able to return to work, three weeks after the surgery, I began experiencing periodic numbness in my legs.  Eventually it was to be accompanied by severe pain in my abdomen, like a rope being tightened, and cramping in my legs.  I was seeing a variety of doctors in addition to my GP. The lead physician was my Rheumatologist. I was also seeing a Neurologist.  I believe we did every test possible in the lumbar area, as they suspected some complication from the gall bladder surgery in that region. Still, all the tests came back negative, and after a couple of months with the cramps, tingling and numbness on the increase, there were no answers.

In late February, 2002, my wife went with her parents on their planned trip to Israel.  My mother came to stay with me in the event something happened.  On 3 March, I was having trouble moving my legs, and by noon that day was totally unable to walk and had to scoot down the stairs on my backside.  My wife, who is a nurse anesthetist, was calling some of her colleagues from Jerusalem and trying to get me taken care of.  It was a Sunday afternoon. An anesthesiologist who works with my wife came over to my house and with my mother and his wife, got me loaded into the car for the trip to the Emergency Room at Riverside Hospital in Newport News.  That was a long scary night, not having any explanation as to why I was suddenly paralyzed.

We began an intensive three-day series of MRIs and other tests, and finally, on the evening of the first day, the doctors told me they knew what was going on and had a treatment program in mind.  Although I had never heard of TM, I was actually relieved that it wasn’t my imagination. We immediately began with a bolus of Cytoxin and other meds.  I began physical therapy, mainly learning how to move around without the use of my legs.  As I wasn’t in any pain, and had my family helping out; and, my wife had flown back within 24 hours, I never really got depressed or went through the “why me” stage.  I had an amazing amount of support from the members of the church I was then attending, as well as from churches I had grown up in.  My coworkers, even friends I haven’t heard from in years, were all sending cards and calling on the telephone.

I guess the worst part of the experience was being 38 years old and having your parents see you in a condition in which you can’t normally take care of yourself; dependant again as if a toddler, in some respects. That was the toughest part emotionally. There were comical moments, as well. Soon after my wife got back, I convinced her that I was good to go on the walker and with a minimum of assistance on her part, could make it to the bathroom.  I ran out of arm strength while attempting to sit down on the toilet, and, in fact, ended up on the floor between the wall and the toilet.  That’s where the nurses found us, laughing, but unable to get up.  They helped get me back to bed, and I apologized for making them do extra work.

I became sick in the hospital; several days spent retching bile, because the bowel and bladder were also affected. I got the old “nose hose” and my food through an IV.  As miserable as I was, the nurses who cleaned me and changed my beddings and administered my medicine and kept my spirits up were absolutely top notch.  I was happy, however, after 3 1/2 weeks to finally leave the hospital and head to Riverside Rehabilitation Institute for intense physical therapy.  Just being outside again, while waiting for the transport van was an amazing feeling.

My weeks at Riverside Rehab were intense and highly rewarding. The physical therapists and occupational therapists worked me very hard and helped me use the walker, and other implements I would need upon my release. The cards, letters, and phone calls were an amazing blessing; my windows and walls were covered. I had a strong Christian upbringing and my faith was dramatically increased as the hours, days, and weeks passed.  I was happy and content with my situation and the people the Lord surrounded me with.  My workplace, The Mariners’ Museum, was fantastic throughout.  Many colleagues visited and helped me keep working on correspondence when I wasn’t in PT or OT.  My birthday was 25 March, and when I was putting on my TEDS and shoes for the day’s work, I became aware that I could move my right foot up and down!  I was astounded actually that the message was getting through from the brain, and that the foot was working again.  I think I moved it thousands of times over the next day or so to be sure that I wasn’t imagining it.  Eventually, I was able to support weight and move around pretty well on my walker, freed of the wheelchair.

The next greatest day was when I walked up a flight of stairs using my walker and having the support of my therapist.  I only went up ten steps, but it was like summiting on Everest. Eventually, I was cleared for a weekend at home to see how I would adjust post-rehab.  My wife and I went to dinner; I fell off my walker in the restaurant, scared everyone around me, but laughed it off.  A couple of days later I got released to come home, but continued an aggressive program of PT.  Over the next couple of months, my therapist and I did all kinds of motion and movement exercises moving from a walker, to a 4-point cane, a regular cane, and by mid-summer, walking with no artificial support at all.  My parents and in-laws carried me back and forth three or four times a week to the rehab center and were absolutely terrific helping us get through all of this.  I returned to work, although I was experiencing severe burning pains in one leg and severe cramping in the other.  These sensations occurred simultaneously and were set off when I changed positions.  The more PT I did, the less often and less severe the pain.  Finally, near the end of July, it had ceased altogether.

I still suffer from peripheral neuropathy in both legs from the knees down.  It feels very much like the day after a very bad sunburn. As a result, I find it difficult to wear long pants.  Again, the museum has been tremendous in allowing me to wear shorts to work.  I keep a pair of longs around when we have guests and dignitaries.  It is also fortunate that we don’t have long New England winters either!

Because my wife’s trip to Israel was cut short in 2002, we both went back there last year for two weeks.  We took a side trip into the Sinai peninsula and both climbed to the top of Mt. Sinai.  Granted, I rode a camel part of the way up, but the last 750 vertical meters (straight up) I walked.  It was a truly awesome moment to be at the top of the mountain where G-d spoke to Moses after having been paralyzed just two years prior.  The descent was 3,750 steps back down to St. Catherine’s Monastery, and I still count that one day’s journey as one of the major accomplishments of my life.

I keep up with my medicines; my general health and my doctors appointments.  And, I wear a TM wristband.  My wife and I appreciate receiving the TMA newsletter and reading a lot of the stories that have similar accounts.  

Lyles Forbes
Curator of Maritime Arts and Culture
The Mariners Museum
lcforbes@visi.net