Turning 60 with a Bang – My Experience with Transverse Myelitis

On May 1, 2013 I turned 60 years of age. Like most folks who change decades, there was some apprehension, but I had always been healthy and active, so the thought was that this would just be another year. I was used to walking several miles each week, traveled regularly in my ministry position, and enjoyed hiking the hills around Nashville, and the National Parks when vacationing. I was completing the details of a Mission Trip to the Philippines, and then for a couple of us on to India. I had been planning this sixteen day trip for the fifteen men and women going for several months. Time was growing close as our departure was scheduled for Monday, May 20th.

On Sunday, May 19th I taught an adult Sunday School class at our church, attended Church services, and then taught a two hour Bible study on Sunday afternoon. I had returned home to finish packing and make last minute contacts. I was feeling a bit tired but contributed it to the routine of the days that had proceeded. About 8:00 pm I received a call from one of the young men going with the mission team, and after talking for about ten minutes, completed the call, hung up the phone, and stood to return to my office. But instead of walking, I fell in the floor. My legs were too weak for me to walk, and I called to my wife for help. She is used to me playing around, and when I told her I could not walk she didn’t believe me. It was only upon watching me crawl toward our bedroom that she was finally convinced that I was not joking, and helped me to the bed.

By this time there was a hot poker stuck in my lower back, hot lava had been poured into my leg cavities, and someone was ripping the flesh from my legs. I took a pain pill left over from a kidney stone attack six months earlier and wondered if this was perhaps a boulder trying to pass. I laid in the bed for a couple of hours waiting for the symptoms to clear, but felt my legs growing more and more “dead” as the paralysis crept past my knees, so I told my wife that I needed to get to the hospital now. After all, I had a plane to catch in just over twelve hours. Arriving at the Nashville St. Thomas Hospital ER somewhere after 11:00 pm I was immediately taken back for an examination. By this time I could not walk, barely move my legs, or urinate. I told the ER doctor that I had a plane to catch in twelve hours and needed a shot to get this cleared up. I received a catheter and morphine instead, and was taken for my first MRI. A neurologist was called in to take over my case. By 4:00 am I had received two MRIs and a lumbar puncture. I told the Neurologist that I had to be on a plane in eight hours. He said, “Sorry, but you will not be on that plane” and told the nurses to get me to ICU.

For some technical reasons I will not go into, this neurologist initially diagnosed me with Guillain Barré Syndrome (GBS – similar symptoms to TM). I was placed in ICU and by 6:00 am was receiving the first of five bags of IVIG. Because of so much medication the pain was now bearable, and I spent most of the next few days in and out of sleep. I received the five bags of IVIG and then left ICU for a private room. By this time I could stand with help and walk a short distance with a walker. I had all kinds of doctors (neurologist, urologist, cardiologist, and general practitioner), nurses, physical therapists and occupational therapists coming and going, and I was beginning to adjust to the lack of control of my legs, bladder, and bowel functions. But on Saturday I turned in my bed and once again experienced that poker and hot lava in my back and legs. I pushed the Nurse’s button and screamed for help. My neurologist was called, but as he was off that weekend, another neurologist came to my aid. After reviewing my records, running some more tests, and giving me a thorough reflex exam, he declared that I had transverse myelitis, not Guillain Barré. Upon searching the Internet my wife and children found that the prognosis for full recovery from TM is much less than from GBS. Emotional Downer!

As I had experienced no infection or viral disease that can often serve as a “trigger” for TM, and as I was otherwise healthy, it was determined that the most likely trigger for my TM attack was one of the vaccinations received for the mission trip. I was transferred to an Inpatient Rehab Facility and after spending several days there, was placed on Outpatient Physical Therapy and sent home. My wife drove into our driveway sixteen days after the initial attack, and twelve hours before the plane was to land bringing the mission team home. I had been away for sixteen days, but certainly not as I had planned!

I have just reached my one year anniversary with TM. At this point I am able to walk on my own, but not for long distances. I still have chronic weakness in my legs, and in my left leg constant pain and various sensation disorders (deadness in the foot and calf, numbness and tingling from hip to toes, sensation of walking on rocks, iron shackle around ankle, toes taped together, and raw blisters on the outside of my foot). After having to self-catheterize for four months, I no longer have to use catheters, but still experience difficulty in urinating normally. My bowel functions are usually controlled by using proper amounts of medications (not too much or too little), but the occasional “accident” still occurs. There is little if any control over flatulence, which my wife finds mildly humorous, and I find extremely embarrassing, especially when conducting Bible studies! I am still gaining strength, and my endurance for physical activity is increasing. My neurologist has told me that I will continue to see improvement for up to eighteen months – I hope he is correct.

I have always been an upbeat and positive person. Last fall (2013) I found myself in a state of depression and living in a constant mental fog. A large part of my ministry is writing Bible study materials. I found this almost impossible. I made the decision in December (with my doctor’s approval) to go off the nerve and pain medications I was taking. Within a couple of weeks my mind was functioning normally again (at least as normally as it has ever functioned), and the depression left completely. There is not a waking moment that I am not aware of the pain and discomfort in my leg and especially in my left foot. But I had this pain and discomfort even when on the medication. For most of my life I only needed about six hours of sleep per night. Now I have to have no less than eight hours (if I am not in need of a nap during the day) and often sleep nine hours per night. Occasionally I still take a pain pill at night when the leg pain will not allow me to fall asleep, but this is usually no more than four or five times per month.

There have been no more long hikes in the hills of Nashville, and my next view of a National Park will likely be from the road and not the trail, but by the grace of God I am so much better than I could be. Many have attributed my significant improvement to the almost immediate diagnosis and treatment received at the hands of gifted doctors, nurses, and therapists. I do not downplay their impact, and appreciate what they all have done for me. But I still place my faith in the hands of the Great Physician, and attribute to Him my recovery to date, and my trust in His sufficient grace for the future. After all, the Bible tells us that it is in our weakness that His strength is perfected (2 Corinthians 12:9). As a writer and Christian Educator, I have published a small booklet (85 pages) titled Medical Crisis: Lessons from a Hospital Bed. In it are detailed eight spiritual lessons learned during my illness. I would be glad to email a pdf copy to any member of SRNA at no cost, or if you prefer a hard copy the cost for SRNA members is just $5 plus shipping. You can contact me at [email protected].

– James O. Jones, Jr.