“The scariest part of the whole thing is when your kidneys fail,” says Robert. “Mine have quit on me three times. The first time I was in the hospital for 3 weeks before they started working properly. The urine, I mean it was pure black. But they just thought I had some sort of viral infection. The only words I remember hearing were rhabdomyolysis and acute renal failure.”

These words and lots of others spill out, slowed only by a touch of Texas drawl. “I’ve worked hard all my life. But I’ve always been a bit sick or had these days when I couldn’t do anything. My father used to think I was the laziest person on the earth. He was a real workaholic and still is to this day. Shoot, I started working construction for him when I was 12 years old, after school, weekends, summertime. But there were many times I’d be too sick to do it. Even in school and P.E. I’d get cramps and be hurting real bad long before anyone else.”

Still Robert had no clue he had a potentially serious health problem until he landed in an Alaska hospital in June 1991. He had just moved to Fairbanks to work on a logging crew. “The first day I rode my motorcycle—a big Harley—into camp. It was rough, working straight for 18 hours.” After a grueling shift the whole crew, except Robert, headed for town. “I couldn’t move. I was remembering that episode of kidney failure in ‘83 and I was afraid it was the same thing.” Robert found shelter in a small trailer at the camp, but when he woke up the next morning, sure enough his urine was black. “I tried to get on my motorcycle and get out of there, but I got maybe a 100 yards and fell.”

With his Harley down and no strength to haul it up, Robert was stranded. “I was so scared I was going to die like a tourist. I was so embarrassed.”

His only hope was an Eskimo working nearby with a chain saw that would eventually run out of gas. When it did, Robert beeped out an SOS on the horn. “He finally heard me and came and picked the motorcycle up. I had a 5-mile drive to get to the highway and then another 20 miles to get into Fairbanks to a hospital. I told them right away it was rhabdomyolysis.”

In a couple of weeks an Alaskan doctor named Doolittle had Robert’s kidneys running again, but the doctor was quite concerned. “He said I had to go home immediately to my regular doctor and find out what was causing these things.” Robert sold his motorcycle and flew home.

Time also flies when you’re searching for a diagnosis. It was 1993 by the time a doctor at Houston Muscular Dystrophy Clinic suggested CPT deficiency. But before a muscle biopsy confirmed the doctor’s suspicion, Robert was hospitalized with viral pneumonia, CK (creatine kinase) levels of 122,000 and kidney failure #3. “The doctors told me one more time and they’ll be shot and you’ll have to do dialysis forever.”

As it turns out, that hasn’t happened. Armed with a diagnosis and a ton of IV fluids, Robert’s kidneys haven’t shut down in 7 years. But the Alaska incident was a turning point. “I never really got over that one. Before I’d be sick for a couple of weeks and then go back to my life. Now I have muscle pain most of the time. The muscle pain has always been the biggest deal to me. But it's so weird. Sometimes I’ll go in with serious cramps and my CK will be normal or 1,000 or 2,000—nothing like you feel. Then other times with the same pain it’s like 60,000.”

Besides dealing with pain, Robert’s biggest problem is figuring out how to kick-start a paycheck. “Most everything I know how to do I’m unable to do. I worked 7 months running a flooring company in Dallas, but I was hospitalized 4 times.”

Now Robert hopes his new computer certifications will lead to a less labor-intensive job. “Some days I couldn’t support myself to save my life. Other days I can. But I’m still going to try. You can’t just quit. You do what you can.”