Sunday, October 19, 2008


This story starts with the post on 10/16/2008

A few weeks later, my parents were out of town. Mr. Buster had no TV (a further sign that deep down, he was an intellectual), so I invited him to our house to watch a movie. About a half an hour into it, he put his arm around my shoulders, and I moved closer to him. Soon enough we were kissing. I never saw the end of the movie.

The next few days were wonderful. Physical contact had been established, and I was elated. Of course it was great to be having sex again (perhaps the one thing the illness hadn’t interfered with was, quite strangely, my sex drive), but more than that, I was thrilled that a guy was interested in me. After Alejandro and I had broken up, I had assumed that my love life was over for the duration of my illness.

What guy would want to date someone who could barely stand up, who lived with her parents, and didn’t have a job? To realize that men, or at least one man, still found me attractive, despite all that—well, it made me feel completely different about myself.

Of course, the intellectual connection I was hoping for had yet to materialize, but that didn’t matter. I still clung to my assumption that still waters ran deep, and his true inner complexity would show itself in time.

And if part of me was starting to suspect that this complexity might just not be there, I wasn’t too concerned. When he mentioned that in a few months, USAID would be sending him to Nepal and he would be there for several years, my reaction, to myself at least, was “Perfect!” He didn’t have to be my soul mate, he could just be fun for a few months.

Besides, dating someone for a short time seemed more realistic, given my circumstances, than embarking on something that had more potential, with all the accompanying hopes and fears.

“This is all that I can ask for,” I thought, “I can have fun for now and maybe even distract myself from being sick for a few months.”

The problem was, Mr. Buster felt differently, as I quickly discovered.

That first night, after the movie, we stayed up talking. He asked me about my illness, and I explained to him what I knew. I had chronic fatigue syndrome, although the illness wasn’t very well understood. There was some problem with my immune system, and also my adrenal glands, which regulate the body’s energy. I seemed also to have food allergies, or at least if I avoided certain foods I felt less tired. He listened sympathetically.

The second night, when I went to his house, he asked me about my illness. What doctors was I going to, and why hadn’t I gone to John’s Hopkins and the Mayo Clinic?

I explained to him that I had been to John’s Hopkins already, and the person I saw seemed as confused as I was. I told him about all the other doctors I had seen, all twenty of them, all without a solution. With each new doctor my hopes had soared and then crashed. Some had tried things that made me worse, and I had ended up in bed for weeks, aching all over and crying from how exhausted I was.

Now, I explained, I was going to an acupuncturist, and I was making progress, even though it was slow. I was taking a drawing class and doing a little volunteering, which was much more than I had done before, so I was happy stick with acupuncture. Mr. Buster listened to all this, quite sympathetically, and he seemed to understand.

The next time I saw Mr. Buster, he asked me why I didn’t go the Mayo Clinic, or at least back to John’s Hopkins, and also why I didn’t go see a psychiatrist?

When I asked him why on earth he thought I should go to a psychiatrist, he told me his mother, who had been a doctor in Sri Lanka and was now a physician’s assistant in this country, had told him that chronic fatigue syndrome was a psychosomatic illness. In other words, it was all in my head.

I explained to Mr. Buster that I didn’t need to go to a psychiatrist. I wasn’t making this up. If it was all in my head, then wouldn’t the cure be all in my head? If I believed a doctor could cure me (as I had with each new doctor) then wouldn’t going to a doctor and taking medicine cure me? Besides, I had seen a therapist for a couple years, and she had always been clear that my illness was not psychological. Therapy had helped me learn how to cope with being ill, but had done nothing to cure my illness.

Mr. Buster listened to all this, quite sympathetically. He seemed to understand.

The next time I saw him, he had some information—a few pages from a medical reference book, which his brother, a doctor, had given him. (It turned out his family was crawling with doctors.) The entry was on chronic fatigue syndrome, and while it asserted that the illness was indeed a medical condition, not a psychiatric one, it shed not a photon of light on my dark problems. It merely listed the symptoms of cfs, and stated that ten percent of sufferers recovered. Ten percent? I didn’t need to read that. I really didn’t.

“Oh, don’t worry, of course you’re in that ten percent,” Mr. Buster said.

And what did the article recommend to achieve recovery? Resting, stretching, gradual increase of gentle exercise. Well, that was good. I already did the first two, as for the last, it got me nowhere except miserable, aching, and in bed. I had learned, instead, how to move around as little as possible: to brush my teeth and take a shower sitting down, to sit on a stool when I did anything at the kitchen counter, and to park myself on the sofa, sewing in hand, or at the kitchen table with a sketch book, and see how long I could go without getting up.

It was not in my nature to do this—I had been a rugby player, a scrappy news reporter and a traveler. Now, however, my energetic spirit got me into trouble. Too much movement, however small, exhausted me within minutes, and the next few hours, or even the rest of the day, would be ruined.

Mr. Buster listened to all this, and seemed to understand, but of course he understood nothing. Or at least, none of it was sinking in. He came to his own conclusions, based primarily on his mother’s mentioning that my illness was psychological and his brother’s scrap of paper that stated exercise would lead to a cure. I could talk myself blue, or purple even, but he would not see things from my point of view.

This is not to say that Mr. Buster didn’t care about me. On the contrary, he was giving every sign of falling for me. If he had cared less, things probably would have been easier. Because he cared, he wanted me better, and he wasn’t going to accept that wishy-washy acupuncture would do it.

All these conversations had taken place while other things were going on. We cooked dinner together, and talked about politics, and the impending war. I started to spend some nights at his house. We walked the dogs and he helped me train Kramer to come when she was called, which until then she had always considered optional.

Throughout it all, he kept returning to the one topic that was becoming an obsession for him: my health. I thought I would have a few months’ distraction from being sick, but it was turning out to be the opposite.

The strange thing is that even as I write this now, I realize Mr. Buster was right on some points. Acupuncture wasn’t curing me, and I was deluding myself that it was. I had gotten better at marshalling out my energy, and this allowed me to take up drawing, in a limited fashion, and to do some volunteer writing for the Chesapeake Bay Foundation, again in an extremely limited capacity. I had also learned how not to feel my absolute worst, not by doing anything that was in any shape or form a cure, but by avoiding the activity that brought on those symptoms. All this I lumped together and took as signs of progress. The truth was they weren’t.

Mr. Buster, with his fresh, outsider’s perspective, saw what I could not: that I wasn’t doing enough to get better. In his own, misguided way, he was pushing me to do more.

And of course, he was also extremely wrong. If he had truly listened to all my explanations, he would have understood that I was seriously ill, with something that couldn’t be wished away with a positive attitude, anti-depressants or more exercise, not any more than it could be overcome by acupuncture and two hours of meditation a day. We were both deluding ourselves, only our delusions were at odds with each other.

“You seem to have energy for what you want to have energy for,” he said to me once, when we lying in bed after particularly nice sex.

“What?” I said. I couldn’t believe what I was hearing.

“You had a lot of energy just then,” he said. “It seems like you have energy for what you want to do.”

I didn’t know whether to cry or to scream. “Energy for what I want to do??
Lying on my back and wriggling around a bit doesn’t take much energy,” I shot back. “What I want to do is walk down the street! What I want to do is get a job, move out of my parents’ house, go running!!!” There were tears in my eyes and I’m sure he could hear the fury in my voice. I didn’t wait for an answer. I got up, dressed, and left, driving the four blocks back home.

He called me soon after to apologize. It was heartfelt and convincing, but our days together were coming quickly to an end. He never gave up trying to encourage me to be more active, and stuck with the idea that a psychiatrist would cure me. “You’re probably just depressed,” he would say.

My allergy to the forced air heating in his house kicked in. He changed the filter, but it made little difference, I couldn’t spend the night there, and my parents’ house, of course, was out.

At one point he had seen me reading my beloved P.G. Wodehouse and he became very excited. His grandfather had loved Wodehouse, and had read some of his books to him as a little boy. I suggested I read to him sometime, and he liked the idea.

The next time we were lying in bed together, I pulled out Laughing Gas and started reading it to him. After about half a page he interrupted.

“I’m bored,” he said.

At that point, I truly gave up on Mr. Buster’s hidden intellect. It just wasn’t there. When it came down to it, we had very little in common: we were both dog owners, and we were former rugby players. My rugby captain Amanda had once said that women rugby players and men rugby players should have as little to do with each other as possible. I was beginning to think she had a point.

I left my Wodehouse book at Mr. Buster’s. When it was coming due at the library I called him to ask if he could bring it with him next time he and Buster went to the park.

“Do you want me to bring your other things as well?” he asked.

Just a few days before he had been asking me if I would go with him to Nepal, or at least visit him while he was there. So I don’t think breaking up was what he wanted. Offering to bring my things was more of a defensive move—the old pre-emptive strike. But a pre-emptive strike can bring about just what you are trying to avoid.

I hadn’t planned on ending it just then. I really only wanted to return my library books. I'd figured I would wait until things had deteriorated completely before I ended it, but what was the point? In my heart I was looking forward to being on my own again, so that I wouldn’t have to feel so bad about being sick.

“Yes,” I said, “You might as well.”


Joe said...

Hi Naomi,

"And of course, he was also extremely wrong. If he had truly listened to all my explanations, he would have understood that I was seriously ill, with something that couldn’t be wished away with a positive attitude, anti-depressants or more exercise"

Hoo-boy, I can relate. My father thinks I should wish my Lyme away, that I could if I really wanted to. He doesn't say so directly, but every time I speak to him, it's:
"you sound good"
"today's a good day"
"well, let's make all of them good days"

I try to explain that it's a process - that if I wasn't "all better" last week, I won't be this week either.

It seems like you've passed a major hurdle - that of second-guessing yourself and not knowing what to believe. Unfortunately, that seems to be almost as difficult as healing the Lyme.

Naomi Adams said...

It sounds like your dad wants to support you, but he just doesn't know how. And maybe it's also just plain hard for him to accept that you're sick, so he'd like to wish it away. I know that those kinds of comments can be very difficult to shake.

You've put your finger on one of the trickiest parts of this illness (maybe all illness): accepting the way you feel and at the same time keeping your spirits up. Forcing a positive attitude is impossible, but wallowing in your misery is-- well, miserable. It took me a long time to figure that piece out.

One thing that helped me get my head in the right place was meditation. I've got to write a post on that soon.

Thanks for your comment!