Sick (10 page)

For some, migraines are visual impairments, temporary blindness, and nausea. For others, the pain – either in your temples, across your forehead, or down your neck and shoulders – makes you twist into strange positions, the oddest pressure points acting as temporary relief. Some people avoid certain trigger foods and alcohol. Some disappear for days at a time into dark, cold, quiet rooms, the only respite from the hellish onslaught of a variety of symptoms and effects.

Speaking from a perspective of Western medicine, migraines can be caused by neurological disorders, head or spinal cord trauma, the strain of undiagnosed poor eyesight. Various persuasions of Eastern medicine will blame the pain on internalized stress, bodily imbalances, a build-up of toxins, misaligned qi, and the obvious bad sleep and diet. In my experience, migraines are often the result of causes from both philosophies.

Migraines are an isolating condition because of the literal solitude that can be required for healing. In my case, a cold, dark, quiet room is usually necessary, which means you not only get to enter a potentially boring, lonely space for an indefinite amount of time; others around you are also forced to be quiet and live/work in dimly lit spaces. You also have no idea when the pain might end. Your medication might not work. You might not have medication. It could be another day before this subsides. You have to start canceling things. I usually end up apologizing to several people.

My battle with migraines began when I was around eight years old. My family life was less than ideal, with a stepmother who regularly berated me behind my
disbelieving father's back and a mother who wasn't convinced such a young child could get such ferocious headaches. Few people in my family believed in my soon-to-be chronic condition, and from the beginning, this established an atmosphere of guilt, shame, and quick fixes to feel better again as soon as possible with no emphasis on the root causes, what could make stress manifest in such a difficult way for a sensitive pre-pubescent girl.

Two main things seem to complicate the illness the most: that it is mostly an invisible condition, not easily seen and identified by others; and that while many people experience a wide range of difficult headaches and occasional nausea, most people are not rendered helpless for days at a time due to either symptom. For many, a migraine is a disease of convenience, an excuse to demand meals at a certain time, to generally act finicky in public, or alternately, to stay home and sleep.

In activist circles, I have taken my share of criticism for most commonly failing to show up somewhere because I'm sick – ashamed I am not present and therefore not always forthcoming about my absence, knowing the reactions I face – or for not acting in ways other people find healthy, though they have little idea what health means to me.

“Gee, you take a lot of medication, don't you?” Even on paper, this statement sounds full of blame, not concern. “What did you eat?” “Have you had enough to drink?” While these may be statements of worry from people who like to problem-solve, they inevitably force a sick person to explain him/herself. As most sensitive people with chronic conditions will tell you, we know every trigger by now. We know how to handle these things. The lack of trust others put in us when they question our ability to care for ourselves is confusing, irritating, sad, humiliating, and disempowering. It can prompt defensive responses and anger. It may immediately make a sick person worse, particularly if their condition is stress-related.

As long as my migraines have been misunderstood, I've also misunderstood the magnitude of my problem. Feeling guilty, I would attempt to quash sickness with pills and a cold cloth, enough to still go to a meeting, to work. In forcing myself into wellness that was a lie, I've ended up puking in rental cars, on the side of the road, leaning out of stopped taxis, whose drivers are patient enough to wait for me and hand me a tissue; in someone's front yard, in my own front yard, in public garbage cans, in an amusement park, in an alley in Dublin on a vacation. The collective humiliation of these events only reinforced that it was my fault. I was sick, and then I made it worse.

Only through allied friendships, with those who also experience chronic conditions or who can empathize with my guilt-ridden pain, did I find enough space to
accept that I needed larger scale healing, to stop blaming myself, to start learning that my anger towards others' misunderstanding was not a solution. And while I don't yet know how to combat the negativity of others, I do know what I need.

I need for people to sit with me, to touch me gently, to love me. Often, my partner takes this role, fetching medication and holding my hand, saying, “I'm sorry you feel so badly.” My best friend has literally held my hair back, then gently put me to bed. Even when I was young, I could count on one person, my empathetic stepfather, to run to the store for 7-Up, to come into my dark room and rub my head and shoulders. Validation in a time of remorseful sickness is truly restorative. To feel less alone is deeply comforting, as is the knowledge you can allow another to care for you when you simply cannot care for yourself.

I also need to be able to out myself to others, particularly activists who sometimes seem to only have one goal. I want to build community where I can be honest about my sickness, as well as my fears. I want that community to include working on larger causes while accepting everyone's limitations. When I join a group, make a new ally or friend, I need to be able to say, “Sometimes I will get sick” without being treated like an exaggerating, unenthusiastic nuisance. I believe owning my illness, without justifying it, is the first step. The next one begins with everyone else.

I've had Lyme disease for seven months. The persistent fatigue and pain, not to mention the cognitive and emotional dysfunction, have made Lyme probably the hardest thing I've ever experienced. However, it's exactly these challenges that have taught me some important life lessons.

I've learned:

1) DON'T WORRY ABOUT ACCOMPLISHING A LOT.

I used to care a lot about using my time well and accomplishing as much as possible. I was one of those people who answered “how was your day?” with “great, I got a lot done,” or “bad, I didn't get anything done.”

However, Lyme disease put me into a time dilation where not only does it take longer to do things, but now I need to rest and sleep more.

Needless to say, I learned to reduce my demands on myself. I came to see that as long as I take care of the important things, it's not so terrible if I don't get much done in a given day. I slowly escaped the paradigm in which the purpose of each day – and of one's life – is to accomplish as much as possible. I'm coming to see that there's enough time in life and that life is not necessarily characterized by scarcity.

2) PAMPER YOURSELF.

Before getting Lyme disease, I got by without doing much for myself at all. I probably thought I did things for myself, but they were useful things that were more for my benefit than my enjoyment.

But once saddled with the pain and mental confusion of Lyme disease, I needed something strong to counteract the badness of my life and to keep my mind distracted and out of its strange Lyme patterns. I needed to do things that reliably
boosted my happiness and gave me something to look forward to.

I watched the TV series The Office on DVD, read the Dykes to Watch Out For comic books (since I couldn't concentrate enough to read regular books), ate yummy food, took bubble baths, and colored in coloring books. I learned to do things FOR myself, not just to demand things FROM myself.

3) THINK ABOUT THINGS HOW YOU WANT TO THINK ABOUT THEM.

According to the usual paradigm, Lyme disease has been a terrible thing for me. I haven't been able to do much for half a year, many of my organs are now damaged with toxins, and most painfully, people who are close to me judge me because they don't understand what I'm going through.

But from my own perspective, Lyme disease been a wonderful learning opportunity, like a challenging graduate program that demands sustained effort, creative thinking and troubleshooting. My assignments are not written homework, but rather crises to survive, bacteria to eliminate, and symptoms to alleviate. Though I won't get any letters after my name, “graduating” from Lyme disease will be something of which I am as proud of as any degree.

4) DON'T WORRY WHAT OTHER PEOPLE THINK ABOUT YOU/TRUST YOURSELF. THEY'LL NEVER KNOW THE WHOLE SITUATION, SINCE YOU'RE THE ONLY ONE WHO EXPERIENCES YOUR BODY AND MIND.

Lyme disease and its coinfections strongly affect the nervous system and can impair memory, concentration, and emotional control. To the person experiencing these symptoms, it might be obvious that the symptoms are due to Lyme disease, but an outside observer might not realize that infections can cause such extreme psychiatric symptoms. In my case, I encountered many situations in which I could tell Lyme disease was affecting me, but an outside observer might have thought I was having separate psychiatric problems.

For example, one time when I stopped my antibiotics, I developed such an altered response to stress that I broke down, shaking and crying, in my doctor's office. Not being Lyme-literate, she suggested that I might have an anxiety disorder, but I knew from what I had read about Lyme and from how strange my body felt that I was experiencing Lyme disease symptoms, not a separate psychiatric condition. It was hard being told that my problems were in my head, but experience taught me to trust my own experiences and not to care if other people thought I had a mental condition.

As another example, I haven't been able to work yet since getting Lyme. Sometimes people wonder why I can't work, since I look well enough, but they can't see the chronic pain, the excessive sleep need, the difficulty standing in place for
more than a few seconds, and the low stress tolerance that I experience. Thus, I've learned not to care if people think that I'm malingering, since I can tell that, in fact, I'm working hard to get better.

I'm coming to see that even in non-Lyme-related cases, other people probably don't understand where I'm coming from, since they don't experience my body, emotions, or history. In general, I don't need to worry if people think badly of me without understanding the whole situation.

All in all, Lyme disease has probably been the hardest single experience of my life, but that's what's made it so growth-promoting for me. I hope that our culture will see chronic illness not as a sign that person is lazy, self-indulgent, or undesirable but as an indication that they've had the occasion to learn many important lessons.

The following is an excerpt from

ONE: IN WHICH I DECIDE TO WRITE PUBLICLY ABOUT BEING ILL

MS, like cancer, turns the body on itself. It stirs a war there; it makes divisions, a Gordian knot of negative spaces. In the gaps are always little murders: cells, stabilities. The first time I saw MRI photographs of my brain, dotted with the milky little galaxies of lesions, the impossibly thin line of my skull circling it like a child's chalk drawing, fragile as sparrow legs, the first time I saw that, the world swung up under me and I went down. Disease is a brilliant contradiction. The foreign body's mine.

Living with disease does this: without your willing it, the secret parts of you light up and burn too intimate and familiar.

After the iced lick of alcohol swab, you press needle through skin, down through the pop and grit of muscle. Push the plunger slow and know that what makes the cold burn near the bone is foreign, is poison, is not really your choice at all. Count hours until what always comes next finally comes: nausea, weariness, grinding aches in your bones so keen you're paralyzed for long minutes. Know that for a day, your lungs won't give you enough air. You'll smell unfamiliar: sweet musk of your skin replaced by the sharp hospital smell of disinfectant. Think of stopping the treatment that only makes you sick so that you don't get sicker. Dream, guilty, of release: wheelchair, numbness, the body finally silenced, nothing left to be done. Tell yourself you're just tired. Irrational. Know you'll dutifully do it, the shot, again, on schedule.