The diagnosis

In 2012, I found a tick on my leg, got sick, and tested positive for Lyme disease. It was diagnosed promptly and treated according to the mainstream protocols, which supposedly means the infection was cured.

That was three and a half years ago. That’s how long it’s been since I felt healthy. Three and a half years since I felt like myself. Now, finally, I know why.

This week, I had a long-awaited appointment with a Lyme specialist. After hearing my history and my symptoms, he said I have chronic Lyme.

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The bacteria that cause Lyme disease. Photo: Centers for Disease Control

Chronic Lyme is an incredibly controversial diagnosis. Many doctors think it doesn’t exist; they don’t believe the bacteria can survive antibiotic treatment. So when I saw my brand-new internist two days after the Lyme doctor, I more than half expected to get a lecture about unscientific diagnoses and quacks who want to take my money and give me harmful drugs. Instead, she concurred 100 percent with the specialist’s opinion. I wanted to hug her.

I’m still sorting through my thoughts and feelings about this news. Treatment will begin in a couple of weeks, after my lab results are in. It will be a long haul; it could make me feel worse before I feel better; and it might not be a total cure. But I will get better.

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Cat and cow

My Grandpa O’Neil was a man of few words and even fewer stories. Although he lived until I was nearly 30, I can remember him telling only two stories. One, about the man who was so rich that he lit his cigar with a $50 bill, was quintessential Grandpa: always worried about money, and impressed by people who flouted that worry.

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My grandfather, John J. O’Neil.

Grandpa’s other story gave me a rare glimpse of his mother’s personality. Catherine Kelly O’Neil was born in Scotland to Irish parents. When people would say, “Oh, you’re Scottish,” she would retort: “If a cat is born in the barn, that doesn’t make it a cow!”

I guess Grandpa’s mother knew who she was, and who she was not. But I wonder whether her identity had more layers than the cat-not-cow story might imply.

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Stone by stone

 

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Photo: Daniel Case/Wikimedia Commons

“When you’re building a house from the foundation up,” my friend said, “each stone has to go in the right place.”

I loved my friend’s image of the way I’m trying to rebuild myself. Even more, I loved the empathy: the way my friend understood why this work is so hard, why it’s going so slowly, why it takes so much of my energy.

I am rebuilding my foundation, stone by stone. Sometimes the work is backbreaking. Sometimes it’s heartbreaking. Sometimes it’s mind-bending, and sometimes it just plain makes my brain hurt. Other people can help me find the stones, or help me figure out where to place them. But the actual rebuilding is my job.

 

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