Bugs in my brain

I lost my wallet the other day.

That was only one of two reasons I couldn’t pick up a prescription that was waiting for me. The other reason: I was at the wrong pharmacy.

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Lyme disease bacteria, in some of their many forms. Photo: Journal of Neuroinflammation/Creative Commons

I pulled out of the drive-through lane and into a nearby parking space, trying to figure out what to do next. The wallet must have fallen out of my jacket pocket, I realized. I turned on the interior lights and looked around inside the car. No luck. I texted my therapist to see whether it had turned up in her office, one of the three places I had been that afternoon. While I waited for her reply, mind buzzing with anxiety, I tried to think straight.

Should I drive home (without my license), make sure the wallet wasn’t there, grab some cash, go to the right pharmacy, and pick up my prescription? Should I retrace my steps in hopes of tracking down the wallet? I tried calling my husband for his common-sense advice. The call went straight to voicemail. I decided to drive back to the location of the yoga class I had just left and look for the wallet there.

It was after hours and the building was locked, but I followed some other people in. Climbing the stairs to the third floor, I found the door locked, so I walked back down to the second floor and took the elevator. In the makeshift yoga room, my wallet was nowhere in sight. Meanwhile, my therapist texted back to say that she didn’t find it, either.

So I went home, trying not to freak out. My husband was there, calm and reassuring. “Maybe it’s in the car,” he said. By that time, it occurred to me to use a flashlight. With the help of two flashlights and two pairs of eyes, we spotted the wallet and extracted it from its hiding place, between the driver’s seat and the center console.

Crisis averted. Time wasted: about an hour. Anxiety level: maybe 5 out of 10. Errands accomplished: 0.

This is my brain on bugs.

As I sat down to write this, anxiety ricocheted through my mind and body like lightning in a bottle. It’s a symptom of the bacteria in my brain.

That’s right. A central nervous system infection, like Lyme disease or bartonellosis—two of my main suspects—can cause psychiatric illnesses. Anxiety and depression, from which I suffer intermittently, are common symptoms. Some people are diagnosed with bipolar disorder, schizophrenia, or obsessive-compulsive disorder, only to find the true culprit is a tick-borne disease.

I’m fortunate not to have those major mental illnesses or the symptoms that mimic them. But daily anxiety and occasional depression are not the sole reminders of the bugs in my brain. Memory lapses, confusion, and slower mental processing also crop up frequently.

These mental hobgoblins trouble me more than my muscle gremlins or the intermittent, arthritis-like pains in my hands and feet. Granted, that’s easy for me to say now: the pain has subsided a lot since early 2016, when I began treatment. Partly as a result, I’m also sleeping much better.

But it’s not the severity that makes it harder to cope with the mental symptoms. I’ve been blessed with a good gene pool and abundant opportunities for intellectual development, and most of the time my brain still works better than the average person’s.

No, the worst part about the bugs in my brain is the damage to my sense of self.

Except for the cash, I could have replaced everything in the AWOL wallet. It’s not so easy to restore my identity as a normal, competent human being: one who can still understand what’s going on, figure things out, and take care of business. The truth is that I can do those things—just more slowly, and with more mistakes, than I’m used to. But my fear is that I can’t. While my physical symptoms are improving, the cognitive ones are not—at least so far, and so far as I can tell.

My main project this fall has been trying to accept that I have a chronic illness. I hope and pray for complete healing. But these tick-borne infections are tricky, especially after they’ve invaded the central nervous system. There’s no way to predict how fully I will recover, and on what time table. I’ll know when I know, and not before.

Acceptance has been a theme of this blog since I launched it last year. At that time, I didn’t know what was wrong with me—the fatigue, the anxiety, the pain and sleep problems—and I was trying to believe my (now ex-)doctors’ suggestions that it was all in my head. Turns out it is in my head, but not the way they thought. It’s also in my muscles and elsewhere in my body.

And I guess it also turns out that complete healing will mean accepting what I have lost. The wallet is back in my pocket. But the past four and a half years, since my initial Lyme diagnosis, are gone forever. Whether or not I make a full physical recovery, my psychological and spiritual healing require making peace with that, and accepting myself as I am. That, after all, is the Mary Oliver Challenge.

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