My Journey

We all have milestones in our lives that mark significant change. Some become less important with the passage of time and a little perspective. Others remain significant and become the events that shape our lives.  This page tells the story of the pivotal milestone in my life; my spinal cord injury.

Injury

October 26, 1994, was the day that changed my life.  I had just started University and was having a fantastic time living on my own and enjoying a new staple of friends.  On that particular Wednesday afternoon I was hanging out in my room with a friend when my right arm went numb.  At first I thought I pinched a nerve so I wasn’t alarmed.  Sure enough, a few minutes later, the feeling returned and we resumed chatting.  This restoration was short-lived, however, as my arm quickly went numb again.  When I started to get “pins and needles” in my right leg, I realized it was too hopeful to think that I had simultaneously pinched two nerves.  At the same time strong pain began developing in my neck. I started to panic as I felt a numbness spreading in my body.

My friend got me to the hospital and tried to keep me calm as I felt the paralysis further weakening my right leg and begin to affect my other arm. When I started struggling to breathe, the staff in the ER whisked me into a treatment room where doctors and technicians tried to figure out what was happening.

As the paralysis spread to my diaphragm, I lost the ability to breath. My last memories on that day were being told a neurologist was on the way and being asked for my parents’ contact information.  Around two weeks later, I “emerged” from a morphine high to face the reality that I was paralyzed from the shoulders down using a ventilator to breathe.

Transverse Myelitis

My diagnosis is transverse myelitis.  From the National Institute of Neurological Disorders and Stroke:

“Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

“Symptoms of transverse myelitis include a loss of spinal cord function over several hours to several weeks. What usually begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet can rapidly progress to more severe symptoms, including paralysis.”

So, the cause of this bedlam was the inflammation of my spinal cord.  But, why was it inflamed?  Also from the National Institute of Neurological Disorders and Stroke:

“Researchers are uncertain of the exact causes of transverse myelitis. The inflammation that causes such extensive damage to nerve fibers of the spinal cord may result from viral infections, abnormal immune reactions, or insufficient blood flow through the blood vessels located in the spinal cord.

“In post-infectious cases of transverse myelitis, immune system mechanisms, rather than active viral or bacterial infections, appear to play an important role in causing damage to spinal nerves. Although researchers have not yet identified the precise mechanisms of spinal cord injury in these cases, stimulation of the immune system in response to infection indicates that an autoimmune reaction may be responsible. In autoimmune diseases, the immune system, which normally protects the body from foreign organisms, mistakenly attacks the body’s own tissue, causing inflammation and, in some cases, damage to myelin within the spinal cord.”

As I understand it, at some point I picked up an infection.  My body successfully fought off the infection but, once gone, my immune system ran amuck and started to attack my spinal cord.  The attack caused inflammation that, in turn, damaged the myelin in parts of my spinal cord.  The nerve signals sent from my brain are disrupted at the sight of this damage.

Recovery

A month or so after onset, I started moving my right thumb, then my right foot. Soon I started breathing on my own. Transverse Myelitis recovery is unpredictable and to this point my doctors made no attempts to guess the extent of the myelin damage and how much my spinal cord would heal.

I moved from intensive care to a rehabilitation hospital where I very slowly continued to regain function.  However, during a meeting with my rehab health care team, my doctor prosaically stated that I would not walk again.

Those sobering words dictated the next 14 years of my life. My previously undefined goals in rehab were clarified to get me back into the real world with limited function.  I gave up hope of recovery; I didn’t know any better.

I did know that my injury was not what people consider a traditional complete spinal cord injury. I regained a significant amount of function, particularly on my right side. After accepting my injury and moving on with life, I was happy that my “incomplete” injury afforded me certain “extra abilities”.

Last year I began pushing a manual wheelchair around for cardiovascular exercise.  I had no expectation to develop any further ability; I just wanted to be healthy. It was manageable so I made the decision to use a manual chair full-time rather than just while exercising. In the process of ordering the chair, I came across a web forum that provided valuable advice on chair specifications. I soon discovered the forum addressed more than equipment; its members, primarily people with spinal cord injuries, discussed everything from exercise and care to music and politics.  I happened across a thread in the forum entitled “Walking Quads”.  I was incredibly surprised as I had never heard of people with spinal cord injuries walking. Participants discussed problems, solutions and techniques. There were also video demonstrations.  One particular video both inspired me and convinced me that I could do it too. So I called a friend over, stood up and took my first ten steps.  That was the beginning…

My SCI journey is found on these web pages in photos, videos and blog entries.  Enjoy.

Laurie

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