The phalaenopsis orchid is a metaphor for the healing of medullar injuries:
whenever its stem is damaged, it regenerates and enjoys a second blooming.
I am Michele Zander, Director of Neurogel en Marche–USA. In many ways I am like a lot of you, and yet we are all unique – after all, who really knows what I or any of us has experienced: the context of how our life changing injuries or afflictions occurred and what it has meant to us personally—to our lives our family and friends, to the very sources of our joy.
For me, this all began the day in November 2002 I decided to use a heavy piece of lawn equipment to “vacuum” clean our yard. Just another form of an invigorating, physical and fulfilling workout, right? However, this one left me with intense back pain that would have required emergency surgery. Instead, by the end of the week I underwent two embolization procedures that left me paraplegic: completely paralyzed from the waist down. Although against the advice of my medical team, I contacted SCI experts and chose to pursue surgery about 30 days later. That surgery and months of strenuous rehabilitation restored my ability to walk with the aid of a walker.
Almost 14 years later I still need a walker to walk through the house, have diminished sensations in my lower extremities, and I experience constant and tremendous neuropathic pain, at a level of 6 to 8 out of 10. This pain wakes me up or keeps me awake at night. Those of us familiar with this pain scale know it is no laughing matter.
Pain and frustration are now everyday reminders that I am no longer the person I once was. The things I used to take for granted: my job as a teacher, my life as a wife, and mother; simple activities like cooking, cleaning, running, walking the dog—walking the dog--my most enjoyable personal moments of privacy, were affected.
I often think: “What I wouldn’t give to simply walk the dog again, unassisted.”
During my rehabilitation, the medical staff asked me what my goal was and I told them I wanted to walk again one day. They would unknowingly discourage me as they may have done to you. As they wrote my goals in my medical records, they would sigh, implying that I needed to learn to live with my handicap. Essentially they were saying: “Give up! There is nothing you can do.” Because of expressions like this, many of us eventually lose hope and do nothing. In fact, I must sadly admit that for years I allowed myself to live within the “slough of despond”.
I later discovered that my spinal cord injury was directly related to an arteriovenous malformation that had been misdiagnosed several years earlier. For years I had experienced burning sensations in my lower back. Doctors had dismissed this as common to lower back pain. After one particularly painful and debilitating bout, they eventually prescribed an MRI. The MRI was not properly interpreted and I was told that I had to learn to live with the pain. So I did learn to live with the pain which varied in intensity over time depending upon my level of physical activity. Despite numerous consultations with medical professionals over the next five years, the cause of my back pain was never detected until it was too late.
Truly unfortunate, however; in the course of my rehabilitation, I met many people from all ages and walks of life who had become paralyzed as a result of ridiculous, freaky occurrences. A man who was working on his roof fell and became quadriplegic. An 18-year old girl fell asleep at the wheel and woke up in a ditch, paralyzed. A woman went for a walk and a tree branch fell on her back, paralyzed. A football player slipped on a bar of soap, paralyzed. I met numerous young men at a rehabilitation hospital who lost use of their limbs following gunshot wounds. Broken lives, too many to recount; of desperate people who, like me, were denied hope because there was no known cure yet.
Then one day my prayers were answered: I found out about an association called Neurogel en Marche and I regained hope. This hope, turned into faith as I learned the substance of the Neurogel project. I got in touch with many people—injured, family members and researchers who considered that life without basic functions was unacceptable. They said, “We will not give up. We will continue to make progress. We will make it happen! They believed and still believe a cure is within reach.
I have come to know and admire these people—they are true champions who are devoted to finding a cure for chronic spinal cord injury and other neurodegenerative diseases. They not only volunteered, they invested their own money. Although they suffered many setbacks; they persevered because they had faith in the project that no doomsayer could extinguish. They believe. They know it can be done.
Is there any surprise that I chose to join these compassionate Champions in their Divine driven efforts to bring a remarkable cure to all mankind?
After all these years, I truly believe we are on the verge of a promising therapy for not only spinal cord injury but also other neuro-degenerative diseases such as Parkinson’s diseases and skin lesions such as scleroderma and bed sores. I take great comfort in knowing that and that we will never give up.
Perhaps one day we will meet and recall the day we all became united by this common purpose: To keep Hope alive and regain our ability to walk or whatever it is that we lost.
May God bless us all and make our dreams come true.