On July 15th, 2011, I became paralyzed from above my chest area (that is the T4 area of the spinal column) down to my feet. Within minutes I went from being a happy and healthy person to a paraplegic that was in danger of having my breathing stop at any moment although there was never any shortness of breath or loss of consciousness. Just prior to the “event”, I was driving to pick up a takeout dinner and felt a sudden sharpness on my left shoulder blade. Gradually, my legs became light and weak, and my gait became unsteady. I made it to a friend’s house, sat down and found that I no longer had any sensation or control over my body. I felt nothing. Absolutely nothing. Nothing worked as it had before. Frankly, I imagined that this was how it would feel if I were buried up to my chest in sand. I realized that I had to get back inside the house so I dropped to my knees and used my arms to drag myself into the living room. 911 was contacted and the paramedics arrived. I will never forget the look on the paramedics’ faces as they poked and prodded me with their assortment of sharp objects – none of which I could feel.
After more than 2 days in intensive care and 10 more days of a battery of blood cultures, tests, MRI’s, MRA’s, CAT scans, x-rays and spinal taps, it was determined that I had acquired a condition that strikes approximately 1 in a million people (mostly young adults) annually and has no known cure. I was diagnosed with what is called Acute Idiopathic Transverse Myelitis (ATM). Using my extensive medical background (ha) I accurately figured out that what I had was bad/severe (acute), that there were no clues how I had acquired it (idiopathic) and that it had crossed (transverse) the spinal cord Terms such as MS and Guillain–Barré syndrome were floated around. All I knew was that my body had begun a slow transformation from being paralyzed to having unbelievable excruciating levels of pain and ultra sensitivity throughout my lower extremities. I soon found out that this really was a neurologic attack upon my body that affected just about everything. I discovered that in many injuries and illnesses that involve the nervous system, such as with a stroke or a brain injury, the damaged area can repair, albeit in a much slower way than a broken bone or soft tissue injury. Even though I was diagnosed with a condition that had no known cause or cure, I went full steam head to take advantage of what I would call “God’s little loophole”.
TM is not a specific injury or disease, but it is one’s body’s immune system’s attempt to fight off and destroy a toxin or virus that threatens our bodies, as a result damaging the body itself. In my case, no cause was ever officially identified although I had reported to the medical staff that 13 days prior I had a spider bite on my elbow that was very inflamed and very painful and appeared to be infected on the area around my elbow. 12 days later I became paralyzed.
Whatever the initial cause may have been, it had caused inflammation in my spinal cord. In effect, the T4 section of my spine (upper rib cage area) and the L3 area had become damaged. If the damage had occurred one section further up, I would have been unable to breathe on my own. This effectively shut off all neural impulses between my body’s nervous system and my lower extremities, causing me to become a paralytic within minutes.
I remember vividly having had dozens of MRIs, which allowed the doctors to see the damaged area. Not a night has gone by without seeing that mysterious whitish patch and devising ways to defeat it. I took advantage of God’s little loophole and started working out in any nursing home and therapeutic facility that would accept my insurance (5 nursing homes, one physical rehab facility and 4 hospitals) to keep my body strong and healthy. I never missed a day of therapy. I also agreed to have a pump installed near my stomach so that muscle relaxation medication could be more effectively distributed directly into my spine. The first one malfunctioned and the second caused a serious septic infection that required hospitalization and a month of intravenous antibiotics. All is working well today.
19 months later I have regained most of the feeling in my legs, I have my own apartment and my personal therapist and aides that have been a Godsend. Although I am in a wheel chair, I continue to regain strength and can now ambulate with leg braces and a walker. I can feel all of my muscles and you will be the first to know of my next big step (pun intended).
Not a moment goes by that I don’t thank God for the gift he has given me. I consider myself lucky and I am working on numerous things of interest; I am the group support representative for the New York metro area for SRNA. I am also working on starting a small business enterprise (Northern Capabilities, LLC) that would design and manufacture products to give more independence for people such as sliding boards, leg lifters and reaching/grabber sticks among other items. I am also working with my legislature to create awareness for Transverse Myelitis Day in New York State, which is June 6th.
I promise to use my experience to educate and help others in a similar situation. I can only hope that, as you read this, you may take the time to allow yourself to appreciate the gifts that are all around you and appreciate the selflessness within others. Deep inside we all have an inherent desire to be altruistic!
Thanks and God Bless.
“It’s hard to stay mad, when there’s so much beauty in the world. Sometimes I feel like I’m seeing it all at once, and it’s too much, my heart fills up like a balloon that’s about to burst… And then I remember to relax, and stop trying to hold on to it, and then it flows through me like rain and I can’t feel anything but gratitude for every single moment of my stupid little life… You have no idea what I’m talking about, I’m sure. But don’t worry… you will someday.”
Lester Burnham from American Beauty