There's No Such Thing as Can't

While training last year for a grueling October multi-sport adventure race, the Daniel Island resident suddenly began a terrifying descent into paralysis caused by a rare neuroimmunological disorder called transverse myelitis.

It is as an inflammatory disorder that affects part of the spinal cord and causes altered sensation on both sides of the body, weakness of both legs and sometimes the arms, and loss of urinary or bowel function.

Facing possible permanent paralysis and disability, Mark has made a stunning comeback during the past year. This was punctuated Oct. 1 when he won the same adventure race he was forced to miss last year. Today, he’s home on Shipwright Street with his wife, Brittny, and their three daughters, Cora, 10, Elle, 7, and Isabel, 5. And, he has a newfound appreciation for the simple things in life.

"Life is totally different now," Mark said. "I’m happy to just hang out and play with my family. I smile when I’m running. It’s awesome. Just standing up from a conference table is great. You don’t know what a joy it is just to stand up."

The following journal excerpts chronicle the onset of his mysterious condition:

Wednesday, Sept. 8, 2004: I ran eight miles last night. I guess that must be why my legs feel so heavy. The tingling in my feet is different, but it must be from the run. I also feel like I am getting the flu. I came home from work at two today and just slept till six. I don’t feel much better than this morning.

Thursday, Sept. 9, 2004: I threw up this morning just before work. I don’t have a fever, but my lower back hurts and my feet they are still tingling. I am starting to walk like an old man, sort of shuffling around work. I don’t like to have to get up; I’d rather just sit. Since my stomach hurts, I only ate a bowl of oatmeal for breakfast and dinner.

Friday, Sept. 10, 2004: At work I still feel like I have the flu, but the aching is strange. It is very localized in my feet and lower back, wrapping around to my stomach. I left work early and I am still shuffling around. I just went straight to bed, to the chagrin of my wife. She had the flu only for a day or two.

At around midnight, I went to the bathroom to pee and I wasn’t able to. I tried to relax, run water, and take a warm shower. Nothing worked. I really got scared now. I have never had anything like this happen to me.

Saturday, Sept. 11, 2004: Quite an appropriate date for what happened to me today. At 3 a.m., I drove myself to the ER. I was seen by an attending physician and an intern. I was catheterized and 1.3 liters of urine was collected. The doctors decided after examining my prostate that I had prostatitis. The technician told the doctors that there is usually resistance during catheterization for prostate problems, but I had no resistance. The good doctors ignored that information and prescribed some antibiotics. I was really relieved to have nothing major wrong, but I asked the intern if the pills would help with my tingling feet and aching back. She just looked at me and shrugged. So, off I went, back home with a catheter bag tied to my leg and instructions to see a urologist on Monday.

When I got home, my wife called an internist and she came over right away. She was furious that I was home and not still at the hospital with the symptoms that I had. I still had tingling feet and an aching in my back that seemed to wrap around my waist. She immediately drove me back to the hospital and, during the drive, she had me looking up different neurological disorders. I would read her the treatment and then say, ‘D, I don’t think I want to have this one. I don’t want needles in my back.’ She said I should probably put the book down. Now I was really scared.

I shuffled into the hospital and was seen by an attending neurologist and a crew of residents and interns. I was given some Ativan and morphine just before I received a lumbar puncture. That was the last time I walked.

I had to have several MRIs and, from that, the neurologists were able to tell me that I most likely had transverse myelitis. During one of the MRI scans, I recall that I had to be still for two hours. When I got out of the test, my legs were both cramped. Now that really hurt.

***image2***The next day was Mark’s 37^th birthday. Family and friends gathered at his bedside to celebrate, but his recollections are foggy.

"Sunday through Tuesday was a blur," he said. "I don’t really remember anything. Friends told me that I celebrated my birthday on Sunday with a cake and great barbecue."

Two days later, Mark’s symptoms began to spread to other parts of his body.

Tuesday, Sept. 14, 2004: On Tuesday night, I remember being in a lot of pain. I couldn’t sleep at all. My feet were completely numb. They felt like pieces of wood. I could move my toes, so I did that all the time. My upper arms were starting to hurt a bit also.

Wednesday, Sept. 15, 2004: I was able to walk a bit with a walker and some help. I had to use my arms a lot to be able to walk. Then my small fingers started to get a bit tingly and numb. The tingling was like my hand had fallen asleep, but the feeling wouldn’t go away when I moved my fingers. The doctors felt that the numbness in my hands was probably from the walker and all the weight I put on my palms. My arms were hurting worse; I just couldn’t work out the pain no matter how I moved or massaged my shoulders.

I didn’t sleep any on Wednesday night, either. I was feeling completely despondent and talked to an intern about it. What was just amazing about many of the residents and interns was the reasons they became doctors. One had a brother with cerebral palsy and that brought him to the neurology field. A different intern had an issue with his spine and, once he recovered, he went into medicine. I don’t know if I want to go into the neurological research field or not, but what I do know is that I am very interested in the idea.

Transverse myelitis is a rare disorder that occurs in roughly 1-4 cases per 1 million people. Only one-third of transverse myelitis patients totally recover from the condition. Another third have a moderate degree of permanent paralysis and the final third never recover and are functionally disabled. The disease strikes all ages, but is particularly prevalent in children ages 10-19 and in adults ages 30-39.

"Every day doctors would come in and shake their heads," Mark recalled. "There was zero they could do and I had no reason to hope for anything."

Thursday, Sept. 16, 2004: The doctors came in on Thursday morning and they were happy that my legs were moving better than they ever had. All I know is that I was able to lift my legs slightly and I could barely walk. If someone was holding each arm, I could walk a bit, but mostly to move from the bed to a wheelchair. I was discharged and took an ambulance to a rehab facility. Everything was just happening. I didn’t feel any better or even leveled off. I still felt horrible. I still was catheterized and feeling crappy.

Pretty much everything was out of my control, I didn’t even know how to try and heal myself. When I’m sick, I sometimes focus on the problem and visualize the problem getting better. With this, my own body was attacking itself and I couldn’t imagine what to focus on for visualization.

The doctors pretty much did not have anything good to say about my condition and no hope of anything working normal again … It was strange that I wasn’t able to lift an arm without the help of the other arm. I told Brit that it was probably because my arms were tired. I lied. Something was happening to my arms. They were getting weaker and weaker by the minute. The night at the rehab facility sucked – new bed, strange surroundings and a new problem with my arms. My arms were killing me and I couldn’t sleep much. This whole day was overwhelming and things were still getting worse.

On Friday, Sept. 17, Mark was transferred back to the hospital after reporting his new symptoms. His spirits were starting to sag.

"I was pretty confused at the time," he said. "I thought I was getting better then everything was getting worse. It seemed like my legs were also getting worse. I was back in the hospital and worse off than I had been last time I left."

Saturday, Sept. 18, 2004: I am just sitting in a bed now. All the priorities I had in life have changed to very simple ones. All I want to do is to go to the bathroom normally, then I hopefully can start to try and walk. I feel at times like I should just say, wow, this is really screwed up, and start feeling sorry for myself, but I don’t. I just focus on whatever I can do to get better.

New problem: the doctors are now a bit worried about my breathing getting worse. The cervical spine 5 is what seems to be affecting my arms and can potentially affect my diaphragm. Now I am really scared. Not walking or moving my arms is something that has already happened; having to think about having my neck cut open so I can breathe is frightening. My sister stayed all night and that was very helpful just to know that someone is there to watch over me. Having people visit is one of the greatest things to have happen. Even though I don’t have much to say, it is just nice to know that people care.

Mark said he discovered something profound about his neighbors. They care.

"The outpouring of this whole neighborhood was just incredible," he said. "I don’t think Brittny made dinner for a month. People gave gift cards, brought food, watched our kids and mowed our lawn. You can’t imagine how amazing this whole neighborhood was. It’s incredible. I’m so thankful we’re in this neighborhood and on Daniel Island. Everyone was so willing to help, to do anything. That message just blew me away."

Sunday, Sept. 19, 2004: It seems like every day I wake up and something else is not working. My arms seem to be getting less and less movement every day. I can’t even lift them up at all. This morning, the doctors decided to give me plasmapheresis. The name sounded scary, but in actuality, it is just two needles for about two to three hours … When my friends visited that evening, I realized that my condition was really hard for them to see. No one smiled in my room. I think that was a clue that I was not well. At this point, I really was hoping to get better, but I still had no idea what was happening to me. Being in the hospital for over a week now is starting to wear on my spirits.

Monday, Sept. 20, 2004: As I wake up and test my body, my arms are getting worse. Now my first three fingers are tingling and I have to use both hands to move one. The PT people are also giving me clues that I am getting worse (as if I need a clue to the obvious). Where they were once telling me to do leg lifts and arm movements, they now come in and tell me to squeeze my leg muscles. They aren’t really giving up; they are just adapting to my situation. I am very scared of what is happening, I have no control and I can’t even visualize what is happening to my body. I am slowly wearing down; every day something else seems to not work.

Tuesday, Sept. 21, 2004: I wake up again to feel my arms are worse. I have less movement than I have ever had. I feel so sorry for myself that I just break down and cry. I feel sorry for the people that love me who are watching me deteriorate. I feel pain all over my arms and hips. I just let out all the pain of living without being able to care for myself. I really don’t know what to do but just let it all out with heavy heaving sobs. I have turned toward the window and just want to let it all out.

Just at that moment, a third-year resident on my case came in. He had tears in his eyes as he spoke to me about how hard it can be. He later told me about his brother who had a disease that started to destroy his muscles at about 16 and he died at 24. He said he never once heard his brother complain.

Mark’s journal ends shortly after this entry, but his journey continued and arced upward toward a life restored. When his symptoms appeared to recede, he returned home to Daniel Island on Oct. 1, 2004 to begin physical therapy.

"I went and saw Frank Santangelo at The Fieldhouse for physical therapy," he said. "At that point, I could barely walk. I’d wake up, eat a little bit, go back to bed and rest and then see him for an hour. I saw Frank every day for 1 ½ months, then every other day after that."

In mid-November, Santangelo told Mark to start doing aerobics outside of his physical-therapy sessions. After starting with short five-minute walks, he gradually built up his endurance and strength to a point where he could climb stairs and walk longer distances.

"There was a point where I didn’t know how to physically to put one foot in front of the other," Mark recalled. "But I got to the point where I could run for 30 seconds and then walk for 4 ½. Isabel used to tag along with me on her bike."

With hard work and diligence, Mark started increasing his distances and, today, runs six or seven miles at a time. He can also be seen biking all over the island. He returned to his job as a scientist at aaiPharma in Charleston where he develops injectable medicines. As his strength improved, his thoughts returned to the adventure race he’d missed in October 2004.

Multi-sport adventure races are not for the faint-hearted. They involve orienteering, running, biking, rappelling down cliffs and canoeing over a wilderness course. Mark hooked up with his old partner, Bob Branand, and began training for this fall’s race in Augusta, Ga.

"I was freaking out this September because you never know if it’s going to come back," Mark said. "So I did the exact same things I did last year during training to see if I’d be OK. I did the whole thing and it all worked out all right."

The Oct. 1 race exceeded Mark’s expectations when Branand and he clocked the fastest time in their age group over the 40-mile course.

"I was smiling through the whole race," Mark said. "I had no expectations and it was so much fun. Winning was a bonus; just being there was the fun part. It was nice to be able to go from paralysis to winning an adventure race in just one year."

The past year has taught Mark to embrace life and to not sweat the small stuff.

"There are so many little things people worry about. But it really doesn’t matter. It really doesn’t, because, that fast," he said, snapping his fingers. "it can all be gone. And so, every little second is important. It doesn’t mean you don’t worry about paying your bills. But being good to people is really all that matters."