My Journey: Guillain Barre Syndrome

June 28, 2017

 

In 1984 I was diagnosed with Guillian Barre Syndrome. It is a rare autoimmune disorder that affects the peripheral nervous system. What happens is ones immune system malfunctions and attacks the healthy nerve cells which enable the communication between the brain and the muscles. The destruction caused by the attack removes the ability for their brain to send signals to the muscles to move and this results in the onset of rapid paralysis.
 

The illness left me completely paralyzed from the neck down. At the time I was an independent, athletic eighteen year old living an active life. I had no idea that I would soon be faced with the most difficult challenge of my young life. 


I woke one night and felt very sick with flu like symptoms, high fever, abdominal cramps and weakness. I got out of bed to walk to the bathroom and after a few steps my knees buckled and I fell to the floor. I was shocked because it was as though the power to my legs was cutoff and then restored. I was able to stand again and managed to get to the bathroom by leaning along the wall. I felt very hot from the fever and wanted to splash water on my face. I tried to cup water in my hands when I realized I could not squeeze my fingers together anymore. I knew something was really wrong but had no idea what it was and why it was happening. I was taken to the ER and examined by a doctor who at first was in disbelief of my claims of losing my ability to move. Then I saw a change in his demeanor as if something clicked and he knew. He asked to speak to my parents outside but shortly returned to let me know he had an idea of what could be the cause but needed to confirm it with a test called a spinal tap. I was told to lie flat on my back and not move for a few hours to prevent headaches. By the time the results came back the next morning to confirm the doctor’s diagnosis that I had a rare illness called Guillain Barre Syndrome I could no longer move from my neck down. I knew at that moment my life as I knew it would never be the same.

 
In 1984 there was no approved treatment in the United States for this rare illness. However with Guillain Barre Syndrome I did have a chance to regain movement. How much movement and how long it would take my doctors could not tell me. I felt scared and alone even with my family surrounding me with their love and support. I knew this was my fight alone and that no matter how much my loved ones wanted to battle with me they could not. There were days with tears and questioning “why me” however I made a choice that I would fight to recover more and faster than what anyone around me thought possible. Mentally I approached my rehab as if I was training for the most important athletic event of my life.
I was admitted to the hospital and remained in intensive care for six weeks. I could only move my head side to side and most of the muscles in body had severely atrophied. In these few weeks I dropped from 148 lbs. to 114 lbs. I was also now in danger of being placed on a ventilator because the Intercostal muscles that help move the lungs when breathing began to be affected by the illness and started to weaken. Being placed on a ventilator comes with the risk of a number of complications, some with fatal results and others that could have led to a much longer recovery. I was asked to blow into a device that measured my lung function every thirty minutes to assure I was getting enough oxygen. I blew as hard as I could every time with only one goal in mind: never letting the measurement fall below the level that would put me on the ventilator. I came close but managed to stay off the ventilator. This was significant to me because it was my first victory won by my mental strength. I would use this victory as the cornerstone of my recovery. 
I used an athletic training mentality during the rest of my rehabilitation over the next two years. I experienced being quadriplegic to being paraplegic in a wheelchair to walking again with assistive devices such as a walkers, forearm crutches, canes and various hand and leg braces.
It was a long and challenging road with lots of physical and occupational therapy. Many highs - like the day I saw my finger wiggle and knew I was getting better to that first time I pushed up out of the wheelchair and stood again on my own. There were also many lows, such as having to have others feed me and roll me over to prevent bed sores – along with many long, lonely nights in my hospital room after everyone went home.
It has been thirty-three years from the time I was diagnosed and I do have remaining paralysis in both of my legs below the knee and require braces to walk or run.
I learned through it all to value your health, cherish your family and, most importantly, that your mind is more powerful than you realize!

I’m now a father of two beautiful girls, ages 13 & 8. My hope is that I can show my girls, loved ones and those who are facing a life altering illness or challenge that if you believe and persevere then then the Ironman mantra rings true that ‘Anything Is Possible!! ‘ So my mantra now is “Anything is Possible if you Believe! ”

In 2012 I started training with Ben Bigglestone owner and head coach of VO2 Multisport. My goal was to complete an Ironman Triathlon. I wanted to give hope to others through my journey from being paralyzed to becoming an Ironman.

In July of 2013 I finished the Lake Stevens 70.3 Ironman. Then on December 1st I toed the line at Ironman Cozumel. The horn sounded at 7am to start the race that would push me to my physical and mental edge. 16 hours and 58 minutes later I was the last athlete to cross the finish line with only those two minutes before the midnight cutoff to hear those amazing words “Navin Singh YOU ARE AN IRONMAN!!”

“Anything is Possible if you Believe!”

 

Race Video Link:

https://youtu.be/hEMz3nk7lCg

 

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