Recovering from the heartbreak of divorce, I eventually signed up for an online dating service. After years of sad, stressful times, I just wanted to relax and have fun, get out in the world, talk to some interesting new people.
He was my third date. Smart, funny, sweet, and kind. With blue eyes and a cleft chin, he was handsome in an understated, classic way. Best of all, there was nothing he wouldn’t say yes to, from new foods to travel. He taught me about sailing; I shared my love of cycling. We took turns planning dates that involved something new for the other person. Over a couple of years we grew ever closer, often marveling at just how close we felt.
Half French, he took me to Paris to experience the culture he loves so much. His goal was to show me every single thing he loves in La Ville Lumière. Unfortunately, I was so tired that I didn’t feel like myself. My customary verve and joi de vivre were flagging along with my body.
Back home, I was still feeling tired all the time. Clearly I hadn’t had jet lag or flu in France. My body hurt in strange ways. I slowed down physically, then began to creep rather than walk because of severe pain.
I went to all the appointments seeking answers by myself, in cabs when I was too sick to drive. It seemed best to brush aside the fear and uncertainty because, well, it couldn’t be so bad if the experts couldn’t find anything wrong with me, right?
Then I crashed, couldn’t go to work, spent days in bed. The final diagnosis? Lyme disease. Because it hadn’t been caught and treated properly at the outset, I was in deep trouble. The bacteria from an infected tick had traveled to my central nervous system.
I can’t remember much of anything about our relationship during that time. Like my ability to read back then, I guess my ability to make memories slipped into the shadows, too. He was working 80-hour weeks, building a business; perhaps that’s why he was able to tolerate my many new limitations.
I do know I pushed hard to seem normal when we saw each other. I’d hunker down in bed all day while he was at work, but try to get up and appear okay in the evenings. On weekends I did my best to help with the sailboat, but my best wasn’t very good.
Meanwhile, this quiet man was out of his depth emotionally. But he expressed flashes of insight. He said once, “Lyme is like a third person in our relationship.” He was right.
Lyme pulled me his way constantly, stomping on our joys. He was in bed with us first thing in the morning saying, “Stay in bed, don’t get up with him,” and dragging me into bed at all hours of the day. I had to cancel dates at the last minute because of his vagaries. That awful spoilsport cluttered up the place with pill boxes and IV supplies, depressing to see month after month. I didn’t feel up to going on weekend getaways with Lyme stalking me, lurking in the car’s back seat—or sitting on my lap.
And I was always talking about him. It’s Lyme, I’d say. I’m in distressing pain, I’m unable to cook or cycle or walk the dog a short way.
How my partner hated it. Only rarely did he express his fears and frustrations, but they were intense: “Cancer would be easier to deal with; why there isn’t a certain prognosis and treatment? Why isn’t there a medical team to help you? Why do you have to have that scary IV line going through your veins to your heart for more than a year? Why so many pills? Could you stop taking the pain meds? You’ll get addicted!” And, “When will you be cured?”
It wasn’t just my severe physical limitations. At the height of things, inflammation in my brain just about shut down my executive function. I could not read or write. At all. I couldn’t keep my meds straight or remember things from two minutes or two years before.
And I hallucinated. There was the cat burglar creeping around on my back deck, a horse in the living room, a symphony filling the house with music.
Lyme hit the emotional center of my brain just as badly. At first I thought my rage and anxiety and panic attacks were more run-of-the-mill outbursts sparked by stress and depression, amplified by illness.
Oh, I had that, all right.
But as I came to understand, this stuff was also physiological. Brain inflammation meant irrational emotion. Sobbing jags. Sometimes I was sweet as pie, sometimes I was a total bitch.
I see it now: He never knew who he was going to get, the chipper person he’d known or the depressed patient, the Angel or the Ice Queen. Where was the lively, outgoing, and outdoorsy woman he’d fallen in love with?
He left me after two more years of Lyme hell (and a couple of “small” breakups along the way). He told me Lyme wasn’t the reason, but in my gut I knew the truth. Of course I told myself I was better off. Don’t we always?
That spring, my brain fog was so severe that the numbers on my tax forms swam before me. He’d done my taxes every year. I was learning to ask for help in general, but this was a hard one.
Why not call H&R Block? Because with my confusion and memory issues, how could I? In the end it was less humiliating to call him than to let a stranger see my struggles: my inability to keep appointments or think straight or organize my papers.
The minute I went into his office and gazed into his blue eyes, I knew I wasn’t over him. But he graciously did my taxes once again, and that was that. Or so I thought.
Treatment finally got the upper hand over my infections. I went back to work, tentative but excited. Slowly but surely, I turned the Big Corner and began to really recover. I remember thinking, “He should be with me to celebrate this milestone.”
In fact, he was in my first thoughts every morning. Week after week, I gripped the steering wheel of my Escape and sobbed in grief and fury all the way to the office, an hour or more, with the voice of my new best friend Adele booming strongly in my ears, mostly “Rolling In the Deep.”
“We almost had it all…”
I should have deleted his number in my phone. I called him once from the ocean, Rehoboth Beach, where we’d spent an early romantic weekend together. And another time from a river where he’d taken me out in a double kayak so I didn’t have to paddle much. We joked I was Cleopatra.
Then, the foolish woman who was missing him still when the next summer rolled around called and simply demanded that he see me. We were both dating other people, but for me something big was missing.
We sat at a coffee shop, on a little balcony where there was a modicum of privacy. I knew I looked my best; how could he resist me? I let him have it with all the passion in me—and I’m a very passionate person.
“How could you give up on what we had? Didn’t you get how rare that was? Look at me now, I’m better, I’m me again!”
When we walked out to the parking lot, I fled directly to my car. (Rules of relationship engagement: Always have an exit strategy after setting your heart on the table to show the other person). My trusty Escape wouldn’t start to allow me to escape. He came over to see if he could help, and I remember kicking a front tire in frustration. So much for the smooth getaway.
A few weeks later he wrote me a long and thoughtful letter; ultimately we got back together. Then came a couple of great months just like the old days. We fell in love all over again, two peas in a pod. Who gets a second chance at that? It was a gift.
But in late summer, as careful as I’d been, I found a tick on my leg sucking away. I called my doctor, who put me on antibiotics right away “just in case.” Unbelievably, that tick re-infected me anyway. Within weeks I crashed because my immune system was still too fragile to cope with a new hit. I fell all the way back to zero. Out of work and in bed, sick 24/7.
To make a long story less long, I’ll tell you that my treatment involved heavy-duty IV antibiotics, a harrowing if essential ordeal. By then I could see that my sweetheart’s heart wasn’t in it. He never said it aloud, but it hung in the air between us: “I can’t go through this a second time, what if it never ends?”
He was ok with the everyday things, taking up the slack and cooking dinner and laughing over Jon Stewart. He helped me clear out my office at work. He took me on a zillion dates, not the day trips and museums we were used to, but to local restaurants for a meal, and movies when I could sit up long enough without too much pain. But our life together wasn’t the same.
I remember when he took me to an historic bed and breakfast in the country, a lovely old red brick home surrounded by fields. My strongest memory is of how we went for a walk and after ten minutes I said, “I’ll take this short path back, you go the long way ’round.”
I was learning to heed my limitations. He argued with me. “Why can’t we walk together? I didn’t come here to walk alone. It will be good for you.” He didn’t get the depth of the tiredness my illness caused. He didn’t, of course, want to. He didn’t want see that I feared ticks in that grassy field.
What I needed was a partner who could understand that pushing against Lyme only makes you fall down, that you have to pace activity carefully while recovering. Is that too much to ask? My choice was to walk with him and then be too ill to go to dinner, or take the five-minute route back and endure his frustration and anger. Not to mention my own disappointment at letting him down.
Lyme broke him that second time around. After he left me suddenly and for good last year, I wrote him an email. I said, “Don’t feel badly about leaving, feel good about how long you stayed. For four years of illness, seven years all together of many good memories.”
“Thank you,” I said. I meant it. I’ve heard of so many partners giving up, spouses of 20 years who left within a year of Lyme striking like a snake.
Crushed, I also hated him passionately for giving up on us, on me. For wanting to spend his life with a well woman, not this woman.
I meant that, too.
Adele and I have moved on from “Rolling in the Deep” to her newest song, “Hello.” Will that be him calling me in ten or twenty years? I cannot say. But I did delete his number from my contacts the other day.
Lyme stole this relationship from both of us. But I can’t keep grieving, I have to move on. Here comes the first Valentine’s Day without him in years, and I have to listen to Bob Newhart and just say to myself, “Stop it.”
Ever since I was a little kid and made valentines with construction paper, doilies, and glitter, my fingers tacky with Elmer’s glue, I’ve always thought of Valentine’s Day as a celebration of not romantic love but all love.
Tomorrow, with a dear friend who’s become a sister, who is one of my favorite people on this earth, that’s exactly what I’ll do.