A Painful Life Lesson From Chronic Fatigue Syndrome

Assignment: Write about a big lesson you’ve learned in life. Give the person you became an Indian name and give the lesson an Indian name.

Person I became: Broken Arrow
Lesson: Trying Too Hard

I fear that I did something wrong that precipitated my descent into Chronic Fatigue Syndrome (CFS). I fear I made some bad choices in early 1988 and they led me out of normal health into chronic illness.

I was taking 22 units at Sierra Community College that Spring semester of 1988. I also worked a gardening job for about 20 hours a week.

The previous semester, I’d completed 21 units with straight As for the first time in my life.

I’d been accepted into UCLA as a pre-Economics major.

On the surface, everything seemed great. I was going from success to success. I had $25,000 in the bank from working construction. I could do 120 pull-ups and 1400 push-ups in an hour. I might’ve been stronger than any time previous.

But there were warning signs that something was wrong. I was getting up at 4 a.m. every day to study Calculus, my most difficult subject because my math background was so weak. The last time I ever cheated in a class was the previous semester in Trigonometry.

“If you have to work so hard at community college,” my mother said, “what will happen to you at university?”

My sister from Australia spent the Christmas break with me. She slept in my room. She said I cursed in my sleep.

I had been in peak physical shape when I started the fall 1987 semester but by November I regularly got severe colds and flus. I would fast to recover quicker, drink huge amounts of water, go to school sick, and at times lose up to 15 pounds before bouncing back.

The harder I tried, the more I compressed my neck, hunched my shoulders and collapsed my torso.

Also, I wasted time on such frivolity as “The Dating Game” which featured “Sierra’s Sexiest Men and Women.” I lost. I was still a virgin.

“I’ll break through or I’ll break down,” I kept saying to myself as I pressed through February 1988. “Either way, I’ll get love.”

Perhaps the first recorded outbreak of CFS was in Lake Tahoe between 1984-1987. Two physicians during that time diagnosed 259 patients with the disease.

Two hours drive from Lake Tahoe, I lived with my parents in zip code 95658.

I came down with mono in late January 1986 and it hobbled me for a couple of months. I’d never experienced any illness like it. All the others had gone away after a couple of weeks at most. This one dragged on. I could make it to class and to work but I felt wiped out all of the time.

When I finished the semester with a B average, I took a job in landscaping, trusting it would restore me to health. It did.

I enjoyed it so much, I dropped most of my classes in the fall so I could keep working outside.

It was miserable, however, working construction in the winter. I returned to full-time school in the Spring and worked full-time on the side to maintain my health.

My father — who got two PhDs in 18-months each by rising before 4 a.m. every day — repeatedly warned me that I was spending my health to get my wealth and that I would be better served by a more moderate schedule.

I wonder where it all went wrong? Was it the year I drove around with a leak in my gas tank, filling my VW Bug with noxious fumes whenever I turned a corner too sharply? Was it the dangerous pesticides I carried in the back seat to kill weeds? Was it the ditch water that gave me giardia? We lived in the country and our water came from ditches that traveled for miles. Like all the families around us, we chlorinated the water and boiled it. My parents drank it and they never got sick.

Who knows who murdered my life. All I know is that I got what felt like the flu in mid-February 1988. After a couple of days in bed, I struggled back to school and to work only to have a relapse a day later.

This became the pattern for the rest of my semester — a few days of work and school followed by relapse.

Nothing like this had hit me before. The mono was constant. Now I was getting mono-like attacks but they came and went depending on how much I physically exerted myself. Abundant rest left me feeling OK but broken. I knew my body engine had suddenly become weak and I had gone from the best of health to the worst of health overnight.

Frustrated by falling out of shape, I went for a three-mile run one Sunday afternoon in March, 1988. Within a couple of hours, I had a severe relapse.

It would be the last time in my life I’d complete such a jog. From here on, I lived as an invalid.

Though what I most needed was rest, I felt under pressure at work because I had over-ordered hundreds of dollars worth of plants which had to get in the ground.

The first doctor I saw was in March at Sierra College. He wondered if I had AIDS. I was still a virgin! I took the test and it was negative.

My parents accompanied me to the next doctor who wondered if I had Epstein Barr Virus, another trendy disease of the time. Again, negative.

My mother wrote a long letter of introduction for my doctors describing my problems: “Recurring viral symptoms–fever, sore throat, swollen lymph glands, hives, fatigue, malaise and headaches…. His dirty socks have always smelt terrible, as though something died.”

I dropped down to 15 units, halved the number of hours I worked, and got through the semester with As in every class but Calculus (a B). That summer, I worked moderately and took two classes (As).

As I increased my studies over the last week of summer school, I felt my body run down and another relapse wash over me.

My parents urged me to stay home from UCLA but I drove away anyway one Monday afternoon at the end of August.

I napped at a couple of stops along I-5 before cresting the mountains leading to southern California at around 2 a.m. I saw all the lights and felt excited that this would be the place where I’d recover my health and make it big.

Over the next four weeks at the UCLA campus in Westwood, I slept in the bushes beside the girls’ softball field for I didn’t want to spend the money to get better accommodations. My diet largely consisted of peanuts, raisins and oatmeal.

I had two health reasons for risking southern California. One, perhaps there was something in my environment at home that made me sick. Two, my parents knew an eccentric practicioner of Hormone Replacement Therapy, Norman Beals, who had successfully treated my stepmother’s Premenstrual Syndrome (PMS).

I drove to see Dr. Beals in Santa Ana and he ran tests of my endocrine system that showed low thyroid and testosterone levels. He pumped me full of testosterone, thyroid, gamma globbulin, Vitamins C, B-6 and B-complex.

Immediately feeling better, I plunged into work, taking jobs at the Periodicals Desk of the UCLA’s University Research Library and as a gardener at a private home in Westwood. Towards the end of September, 1988, I moved into the UCLA dormitory Rieber Hall. I stayed on a special Quiet Floor for serious students. It was filled with Asians and Jews.

Within a few weeks, I was breaking down into relapses and had to drop my jobs and all of my classes but one.

My dorm mates at Rieber Hall speculated that my health problems were all in my head.

My parent’s medical insurance coverage for me ran out, so I dropped Dr. Beals and began going to Student Health at the UCLA Medical Center, but they weren’t able to figure out what was wrong with me.

I rested at home with my parents in Newcastle — 40 minutes drive north of Sacramento — during the three week Christmas break, worked on an autobiographical novel that descended into pornography, and studied economics and calculus a few hours a day. It was too much for my system. I relapsed shortly before returning to UCLA in early January to begin the winter quarter.

I hoped that by not working I’d be strong enough for my schedule. Wrong. Two-thirds through the quarter I again dropped all of my classes but one.

My dormmates whispered amongst themselves that my problems were all in my head. I had a CAT scan of my pituitary gland, but like the rest of my medical tests at Student Health, the results were normal.

Too sick to shoulder a full academic load, I hung on at UCLA because I believed that this elite university was where I belonged. Despite my poor health, I impressed several of my professors. For minutes and occasionally hours at a time, I emerged from my illness with sustained bursts of clear thinking. But then I relapsed.

Occasionally on weekends, I’d play 20-30 minutes of aggressive basketball. For a few moments on the court, as I knocked around my little Asian friends and scored many baskets, I felt like a man again. Then I would stumble back to my dorm bed.

At times, I could get it up to making some great moves under the covers as well. During those frenzies with my girlfriend, I felt good again, but they rarely lasted more than five minutes.

In March, my uncle in Brisbane, Australia, not a physician, sent me an article from a local newspaper about Chronic Fatigue Syndrome aka myalgic encephalomyelitis (ME). It described my symptoms exactly.

I took it to my UCLA doctor and said, this is what I have.

She agreed.

Steadily I felt the noose of chronic illness close in around me and I knew I’d have to drop out of school.

I despaired about ever getting well and in June returned home to my parents’ lonely home in Newcastle.

I wondered if there was something in my environment that was making me sick. Perhaps California was not good for me?

My sister in Brisbane, Australia, asked me to return home. She said her housekeeper from China was skilled in acupuncture.

I returned down under in September 1989 for eight months. Shortly before Christmas, I decided to convert to Judaism.

I became a religious extremist, abstaining from sex and masturbation. When my UCLA girlfriend came to visit me in June 1990, I let her ride clothed on top of me while we made out but no further. She would moan in such frustration but I was living 100% for God now.

Living 100% for God and finding meaning in the personal transformation that I believed was occurring through my suffering and adoption of Judaism, I felt less frantic about my inability to accomplish anything. My job now was to make it through each day, to do as much walking as possible (on average a mile a day), and as much reading as possible (about an hour a day before my headaches became too severe).

When I could do nothing, I’d lie back and listen to classical music or I’d sit in the park next door and watch life go by.

I once saw some kids my age playing and one of them wore a UCLA t-shirt. I got excited and told him, “I went there!” He couldn’t care less.

“I will return,” I said to myself almost every day. “I will return one day to UCLA in triumph. The place where they said it was all in my head, I will return one day and show them what I’m capable of.”

In the park, I started conversations with strangers. One, Maurice Yang, was doing his PhD in music at the University of Queensland. He later wrote to me that one day he hoped to go into a bookstore and find a book in there by me.

In many ways, my life was easier than ever. I had no responsibilities. I required no special treatment and I made few complaints.

“Did I drive myself to this infantile state?” I worried. “There’s nothing I consciously want more than to be healthy and busy again, but I know how suicidally I drove myself before illness. I deliberately ran into a brick wall. I guess some mistakes you can’t take back and for which there are no repair. My dad was right. Moderation is the best policy. His constitution can handle extreme strain, but mine can’t. I guess I made my sick bed and now I must lie in it.”

My time in Australia made no difference to my health. I moved back to my parent’s home and was treated for free by Dr. Zane Kime, a family friend.

Nothing helped. When Dr. Kime died in a climbing accident in 1992, I moved on to other doctors and tried various medications without much help.

I became convinced in 1992 that the answers to my problems were out in the world and I just needed to reach the right people. So I started placing and answering singles ads and talking to people regularly on the phone and occasionally they’d make the drive to see me in person.

I feared that as long as I stayed home, I would never get well. In August 1993, I moved to Orlando to live with a woman eleven years my senior who was also chronically ill.

She took me to see her psychiatrist Dr. Daniel Golwyn, who prescribed nardil aka phenelzine.

According to Wikipedia: “Phenelzine is used primarily in the treatment of major depressive disorder (MDD). Patients with depressive symptomology characterized as “atypical”, “nonendogenous”, and/or “neurotic”, have been reported to respond particularly well to phenelzine. The medication has also been found to be useful in patients who do not respond favorably to first and second-line treatments for depression, or are said to be “treatment-resistant”. In addition to being a recognized treatment for major depressive disorder, phenelzine has been found in studies to be effective in treating dysthymia, bipolar depression (BD), panic disorder (PD), social anxiety disorder (SAD), bulimia, and post-traumatic stress disorder (PTSD).”

Over the course of several months, nardil restored me to about two-thirds of normal health and I resumed what looked to outsiders as a normal life.

After six years, I went off nardil without ill effect. I’ve tried many things since for my health, including acupuncture and homeopathy, without lasting benefit.

Now I’m in the process of graduating from a three-year Alexander Technique teaching program. I am doing better and I want to pass on the benefits of the Technique to my students.

I’m still a broken arrow. I did not become the world transformer I dreamed about as a kid. I never graduated from college let alone got PhDs like my dad. I never made much money and I never married. On the bright side, I live and move in tranquility. I might even be capable of love.

About Luke Ford

I've written five books (see Amazon.com). My work has been followed by the New York Times, the Los Angeles Times, and 60 Minutes. I teach Alexander Technique in Beverly Hills (Alexander90210.com).
This entry was posted in CFS, Personal and tagged , , , , , . Bookmark the permalink.