Thursday, June 08, 2017

Waking Up Is Hard to Do

Ever since I was six or so, I have battled alarm clocks. They've jolted me awake. I've turned them off. I've hit snooze. I've gone back to sleep. I've tried to awaken myself gently with the classical music station or Aaron Copland CDs. No matter what, I can't get out of bed when the alarm says I should.

When I was a child, my father and I would race after the school bus. As an adult, I was chronically late for work. I'm not a morning person. I don't sleep well and rarely feel rested. Lymies don't feel well in the mornings anyway, and it didn't help that I'm easily startled and was being shocked awake each day with the equivalent of those paddles they use on heart attack victims. All morning I'd feel groggy and queasy and antsy, with adrenaline pumping through me.

A couple years ago I got sick and had to stay home from work for a few days. When I was ready to get back to the office, I took it easy for a few alarm-clock-free mornings while I finished recovering.

I discovered that sans alarm clock, my mornings were more pleasant. And I wasn't getting to work any later than I had been. Anyway, I had only a few months left in the office before I planned to start freelancing, so I made a radical decision.

I quit using an alarm clock.

Since then (if you don't count my final months at the office when I don't think I managed a single on-time workday—gotta be honest here), I have never, not once, been late for a morning appointment or departure, however early it was. It's been two and a half years.

The night before, I tell myself what I need to accomplish in the morning before my appointment or whatever. Maybe I need to shower and eat breakfast and finish packing for a trip. I don't even figure out how much time I need to accomplish the stuff or what time I think I should get up. I just run through the tasks in my head and go to sleep. I awake just in time to do exactly what needs to be done.

I have a point, and it's not to say that I've finally discovered my superpower. (My real superpower is editing.) It applies to everyone, whether or not they can accomplish alarm-free feats.

We need to listen to our bodies more.

We're taught not to. Depending on our spiritual tradition, we might learn that the body is bad and wants to lead us astray. Depending on how our families operated, we might learn that our feelings don't matter. Doctors test us with instruments and technology, but sometimes discount our own perceptions of what's happening in our bodies. We don't learn a lot about the way emotions express themselves physically or the importance of intuition.

When my health started falling apart in my twenties, I was a classic example of someone divorced from my physical and emotional feelings. Because of the way I had learned to tolerate and ignore pain, it took me years to take my symptoms seriously and see a doctor, and then it was hard for me to interpret, explain, and track how I was feeling. It took five years for me to get a diagnosis. I realize that's way better than what other people experience in getting a Lyme diagnosis, but I still believe that if I'd been more in tune with my body at the time, things would have gone faster.

Ignoring my body's signals also meant that I was regularly getting in relationships with unkind people and getting into situations that weren't right for me. I wasn't paying attention to the anxiety that churned through me, warning me that certain people were unsafe or that I was pushing myself past my limits.

For a few years after my Lyme diagnosis, I was extra kind to myself and tried not to force myself to do anything that felt uncomfortable. Of course there were still a lot of people I had to be around, and things I had to do, that exacerbated my symptoms. But I did my best to treat myself with kid gloves.

I think that was good for me because even though it felt extreme at times, it gave me space to heal and recalibrate. For example, I learned how to perceive small sensations that I hadn't paid attention to before. I had to rebalance my idea of how much pain is too much pain and what's manageable and what's negligible. I also had to learn that physical pain and negative emotions aren't going to destroy me, so I don't have to cut myself off from feeling them.

I think part of the reason so many people, especially religious people, mistrust the body is that they know the wires can get crossed and our bodies can send us the wrong signals. The problem is, we throw the body out with the bathwater rather than tuning in and trying to understand it better.

One of my favorite bloggers, Genevieve, says this:
My body has never been completely perfect or completely flawed. My body is just a vessel and no matter how much emotional or physical suffering it has brought me, I understand that my body above all else is just trying to exist. . . . This body is a gift, a curse, a challenge, and most of all a map to always find my way back to my heart. (Ship with No Sails, "This Body Is a Lesson")
For years I thought my problems getting out of bed in the morning had to do with a lack of self-discipline. I didn't realize that the alarm clocks I was relying on were distorting my body's ability to function, which in turn caused me to mistrust my body's knowledge of exactly what time to wake up. Maybe it seems silly, but realizing I don't need alarm clocks has reassured me that I can trust my body to guide me. That's why it was given to me.

Tuesday, April 25, 2017

Lyme Is Not the Problem

I was recently telling someone about what it's like to live in a dry climate after an entire life spent on the humid East Coast. A few weeks ago I visited the San Joaquin River Gorge, and as I lay on my back on a bluff above the river, feeling the sparkly air and looking up through leaves that are a slightly more yellowish shade of green than anything I remember seeing in the East, my body felt perfectly comfortable. I couldn't believe that I had never felt this way, and I realized that having spent my entire life in one climate, I had no idea what I was missing or that I was perhaps naturally suited to a different locale. I had adapted to humidity. I felt comfortable in it and was even worried that I would shrivel up in the dry West. (Seriously!) Instead, I discovered that in the foothills of the Sierra Nevada, things feel a bit like heaven.

The person I was talking to somehow took this story to mean that I was finally starting to feel healthy again. Since this is undoubtedly true—I am feeling notably better than six, nine, or twelve months ago—I took a moment to revel in celebrating my recovery with another person. But later, the exchange really bothered me. My river story wasn't about Lyme disease at all. It was about realizing that we don't always belong in the places where we are. Just because our families or cultures or other social groupings have always done things a certain way, or our ancestors happen to have lived somewhere for decades or centuries, doesn't mean that our current place or lifestyle is where we belong. Just because a way of life makes some or most people happy doesn't mean it will make us happy.

I struggle with two alternatives when it comes to assigning Lyme a role in my life. On the one hand, I feel a need to regularly remind people that I have the disease and that it sucks. Lyme is one of those invisible illnesses; when people look at me, they don't see a sick person. There have been times when people close to me accused me of being a lazy slacker because I wasn't working full-time. All they saw was me lying in bed all the time. They couldn't see the muscle weakness, brain fog, nerve pain, and bone-level fatigue. With Lyme, you can look awesome but feel like something way worse than crap. And even as I continue to feel better, I still have to live with the fact that over a decade of my life has now been derailed and distorted by this powerful illness. I can't get back my supposedly prime grad school, career, dating, and childbearing years. For women in our culture, that's a big deal. People judge you for not getting your stuff together before you turn 40. Heck, I'd be happy just to have graduated from college.

But on the other hand, there is nothing unique about grappling with the universe's harshest realities and needing to figure out a better way to live. Sometimes when I'm sharing an insight I've gained in the context of Lyme, or standing on my get-therapy soapbox, I get the feeling that people are thinking, "Well, that's all good for her—she's a sick person." Sometimes it even feels like people are just waiting for me to recover from this pesky disease so I'll go back to being the nice, quiet, dutiful, rule-following girl I used to be and quit upsetting their status quo with my weird new ways of having relationships and being a Christian and living my life. They blame Lyme disease for changing me when really it catalyzed necessary changes—changes that many people need to make, but won't unless something up-ends their world so drastically that they question everything and absolutely can't live with the way things are anymore.

Lyme is part of me but it's not all of me. And, I suspect, that's what other people might say about their divorce, or their job loss, or their accident, or their loneliness, or their bipolar disorder. We're all wounded in this world.

Some people reduce me to an illness, to an unlucky girl who failed to beat the system and instead got bitten by a tick. I think that's because they want to believe suffering is something that happens only to certain set-apart people—never to them. And they want to believe that the insights, the life changes, the transformations of suffering don't belong to them either. Because that would be just too hard. They'd rather stay where things are comfortable . . . even though comfortable may turn out to be the worst place of all.

Tuesday, December 06, 2016

Lyme Recovery, Seven Years In

When I first got my Lyme diagnosis, I went to the library and borrowed all the books on Lyme disease I could find (there were only three, if I recall correctly). One book was the personal account of a woman whose undiagnosed Lyme crossed her placenta and infected her unborn son, who later died in childhood after horrific symptoms. That book and a second featured images of magnified ticks, and I would peek through the pages taking care not to accidentally touch the photographs. I realized I might never have children. I returned the books to the library.

The third book was Biography of a Germ by Arno Karlen, a scientific essay on the Lyme spirochete. I didn't finish it because I took it back to the library as part of my stop-scaring-myself-silly dragnet. But I remembered it fondly. The author methodically explored the Lyme bacteria, Borrelia burdorferi, as an organism in its own right, a marvel of evolutionary survival that relies on a complex chain of ticks, small animals, and finally large ones (including humans) to complete its life cycle, and whose ability to constantly shape-shift protects it from antibiotics and immune systems. I preferred to think of Lyme as this tiny, noble enemy, trying to survive just like me and all living things.

It's been over seven years since my diagnosis, and I've come a long way. A succession of treatments has resulted in steady, if slow, improvement in my symptoms. I've been through therapy to deal with the emotional fallout that my illness led to in my closest relationships. I returned to full-time work, then started my own freelance business, and finally moved to the other side of the country, where I have my own apartment.

So this fall I looked up Arno Karlen's book again, and this time I read it through. I enjoyed it just as much the second time around, even though it made me cry.

Lyme is one of the worst and one of the best things that's ever happened to me. I can't say it's the worst because, sadly, I've experienced worse things. And I won't say it's the best, on principle. No matter how much good has come out of my illness, it will never be okay that I have it.

I feel much better than I did seven years ago, but I am still sick, tired, or in pain most of the time.

I hate it that most of the time, my answer to the question How are you? is I'm tired or I just got over a flare or I don't even know because my brain isn't working. I don't always say those things. But I always agonize internally about how to answer. I want to be honest about where I'm at, but I feel like a broken record.

When I got my Lyme diagnosis, I had been sick with the illness (and probably another tick-borne disease, too) since the summer before my freshman year in college. There's a strong possibility that I've had the disease since childhood. So at the point when my doctor started treating my Lyme, I'd had it for at least eight years and possibly two decades. It had had plenty of time to wend its way into my joints, digestive tract, brain, and other body systems. I was so unbelievably sick at the time that there's an entire year I almost don't remember. Treating an illness like that is a very tall order.

The good news is that, once I started treatment, my symptoms started improving bit by tiny bit, and never once have I regressed. Every few months I realize another symptom is gone, or significantly decreased. The very first symptom to start clearing was my severe brain fog; most recently, my stomach problems have all but disappeared. But imagine that you have to walk twenty thousand miles. Each step takes you farther down the road, but there are still a few decades left in your journey.

I'm so grateful for how far I've come. But the truth is, almost every moment is a battle to be awake, to function, to make decisions, to take care of myself, to work, to be social, to do all the things healthy people do without a second thought.

Lyme is part of my identity now.

I've been struggling to come to terms with that fact ever since moving to a new city in a new state in a new part of the world. When I first started meeting people here, I kept wanting to volunteer the information that I have Lyme. Hi, I'm Lee Ann! I have a chronic illness! I think maybe I wanted people to know, in advance, that I'm going to disappear for weeks at a time or be pretty poor company when we do get together. But also, it was a question of identity. At one and the same time I wanted to say This isn't the real me and Who am I without this illness?

Lyme hasn't only affected me physically; it has impacted my thoughts and my emotions due to pain, fatigue, brain fog, and Lyme-triggered depression. It has drastically changed the course of my life, from being unable to finish college to putting on hold (perhaps permanently) any dreams of having a family of my own. It has guided my choices of homes, jobs, social groups, and hobbies.

In a way, this altered identity simply reflects the biology of disease. My body doesn't consist only of my own cells; it also includes a colony of little invaders who have made me their home. We have to coexist somehow. Maybe one day I'll oust the Lyme entirely, but until then I have to accept it and live with it and manage it or I'll go crazy.

At the same time, Lyme has jolted me into a life that is more me than ever before.

I used to be a "good girl," thinking that if I was "nice" and took care of others at the expense of myself, people would accept me. But as my illness worsened, I found that my pain and sorrow were ignored or treated as inconveniences. I realized that if I wanted to recover physically and mentally from Lyme disease, I would need to start saying no to unreasonable expectations. I would need to build relationships with people who could demonstrate true compassion for my situation. I would need to be honest about what I wanted out of life, set goals, and take risks.

Lyme got me into therapy and the 12-step community. Lyme taught me to set boundaries and be savvier in relationships. It taught me to be my own rescuer. Lyme drove me to get serious about my dreams, and that's why I'm finally a freelance editor living on the West Coast. Lyme has reshaped my understanding of Christianity, family, and suffering. It has taught me much about love, gentleness, and compassion. It has cleared space for me to find peace, quietness, meaning, and genuine self-expression.

But despite all the good, a part of me will always grieve that I have this disease, and a part of me will always be angry.

I like to imagine getting to heaven and telling God all these things. I want to know why a tiny tick from His beautiful world got to mess up my life like this, whereas other people got normal, comfortable lives. I imagine He'll say, The spirochetes were just trying to survive, like everything I created.

"But I wanted a chance to do more than survive," I'll say.

And then I'll realize that I did.

Tuesday, May 29, 2012

Wings on My Back

On Friday I got a tattoo. Today (my birthday), a phone conversation left me shaking, drinking a glass of white wine to calm down. I let myself get suckered into an old pattern, one that makes me feel used and patronized and firmly put in my place. Before I know it, my heart is pounding, warning me too late that I can't stop the revictimization that is about to happen. I keep talking, saying the things the other person wants to hear, but the real me has no voice. Afterward I felt paralyzed, words trapped inside me, emotions making my muscles ache. I couldn't see a way out. But there is, there is. I'm changing, and so is my life. The butterfly was engraved on me in an act of hope, memorializing the fact that once you've changed, you don't ever have to go back.

Sunday, April 15, 2012


Today I went to church. I go about once a month now. This is partly due to my health; each weekend I choose one or two main activities and all the rest have to go, including church. But it's partly due to the fact that I want to silence the voices in my head that tell me if I don't go to church, I'm not a good Christian. The voices say this: "Of course you're still saved, but..." Some weekends I actually dare myself not to go to church, risk God's wrath, just to erase those words. Funny thing, God never seems angry at me at all.

Today I walked out the front door into spring. After a mild winter, spring came suddenly and forcefully. The bulbs burst into bloom at one time, then the trees all blossomed at once, and the early spring days were so hot we almost put the air conditioning on. Halfway through March it got cold and terribly windy. I wondered if spring was done for good. Instead, this is a spring with more life in it than I've ever seen before. This morning was warm and humid and overcast, scented with growing grass and cut grass and the abundantly blooming dogwoods, wisteria, and azaleas. I came out the door in my church clothes and half my neighborhood was out in shorts and tank tops, doing yard work and playing catch.

Going to church always set me apart. I was always conscious of how different my family was as we piled into the car every Sunday morning and left our neighborhood for church, where a lot of other similar people had gathered after leaving their own neighborhoods. I knew that plenty of other people went to church, but they didn't go to my church, or churches like mine, or didn't go every Sunday. I knew that going to the right church every Sunday meant I was special and holy. Church was the place where all the special, holy people gathered.

Church was a club where I didn't fit in. I tried. When you're not allowed to be part of "the world," you try desperately to find a place somewhere. But at church, if I wanted to fit in with the youth group, I couldn't fit in with my family. If I wanted to fit in with my family, I couldn't fit in with the church leadership. And all of those systems operated by complex rules of behavior that constantly re-determined whether I was in or I was out.

Today I went to church because I wanted to. And my neighbors worked in their yards, because spring tugged them outside and made them happy. I drove to church through a town bustling with people walking and riding bicycles and setting out on motorcycle rides and going to church. For the first time in maybe forever, I felt like I had a home - a real place in the world. Inside the church, the sanctuary smelled of Easter lilies.

Wednesday, February 15, 2012

Keeping Silent

This past November, I moved my piano from my parents' house, where it had lived since I left for college over 10 years ago, to my own home an hour away. I still take a second glance sometimes when I pass through the living room, amazed at its solid, swooping curves, at the fact that I own it. The feeling of playing it never grows less wonderful. But I've hesitated over and over to write this blog post, because when you use words to tell a happy ending, someone can take it away. I've waited to tell about New Year's Eve 2012, when we stuffed handfuls of Hanukkah candles into small flower vases and lit them all at once, counted down with the people in Times Square, toasted midnight with sparkling wine - and after some of us had smoked cigars on the back porch and everyone had come back inside, I played a song for my friends - the only time I'd ever played my piano at one in the morning, and my happiest New Year yet. I'm afraid to tell about the happy endings, because too much has been happening in between. Relationships and old illusions have been dying before my eyes, I've been having to choose between my own survival and measuring up to others' expectations, an old world of religion and conservatism has become as dangerous to my soul as a concentration camp. I'm afraid, I've been so afraid my whole life. I've learned not to tell my story because when you do, you give someone power to take it from you and use it against you. As I type these words I can almost see them spiraling away from me like white smoke, disappearing into the darkness. Yet my piano is still there in the living room.

Sunday, January 29, 2012

Two Ways of Looking at a Piano

Being a somewhat postmodern 18-year-old, I started telling myself a story right away about my piano, why I had it, what it meant. I believed that having this piano meant that God must love me, that I must mean more to Him than just one of the faceless multitudes He died for. I was astounded at the level of trust and care that my piano teacher had shown in loaning me the additional money I needed. Maybe God had a face; maybe He wanted me to be happy. That was the story I told. But I look back now and listen to another story that was only a whisper all those years - the story I actually believed. In the real story, God had given me more than I deserved out of the scarce resources of the world. Maybe He gave it to me so I would stop bothering Him. I couldn't ask for other things because already I had too much, and I owed Him a lifetime of gratitude. My value had risen from $25 to $2000, no higher.