Sick (11 page)

Disease is a foreign brilliance; my body is the contradiction.

Aphasia: sometimes the word I want goes dancing off without me, as weightless and flirtatious as a wind-born seed spore, a papery butterfly I can't catch, leaving me the wrong one, leaving me a foreign tongue, a world of solid, nameless things. Elevator goes often. Often,
umbrella. Escalator. Plate.
My lover asks, when I'm stammering after
blessing
or
hairbrush,
“Is it the M.S.?” A momentary wince of pain, a lapse of memory one afternoon, sets suspicion in: I imagine the bloom and seep of new lesions like ink spots. Like feathery chrysanthemums opening, a spray of fireworks, the gamma ray bursts of collapsing stars.

Friends say, “You look so very good, you don't look sick, you must be getting better.” It's less description than demand.

My body's a lesson, a warning, a needle, a foreign tongue, a seed spore I can't catch. My body's a nameless, disobedient thing. Call it
elevator, umbrella, lesion
or
sparrowleg.
Call it
inkspot. Chrysanthemum. Blessing.

TWO: IN WHICH I SEARCH FOR A TRANSLATION

In English, we have no language for pain. We speak only in metaphors, indirect and unsatisfying, never quite up to the task. Our metaphors for pain are always about violence to the body (to paraphrase Elaine Scarry), as if to conjure up the image of the harm will accurately account for the pain that results:
I feel a searing pain in my arm. I have a pounding headache. The news of her death was gut-wrenching.
I'm trying to find a more accurate language, one that accounts for the pain of disease without casting disease as a violent opposition, an enemy army. Being constantly at war is exhausting. Disease has become the murderer and mother, my faithless but familiar lover. I've made my home there, uneasily, tenuously, like a squatter finds home in darkened, empty buildings.

Some days I forget I'm sick. When the morning's brilliantly sunny and cool and I wake up early and not tired, when my body feels good because I don't feel it at all, I can live a sweet and temporary fiction. I could be anybody, and I could strike out, a rudderless little ship, with nothing at all in my pockets, hip soundtrack swinging in my head, or slide shipless into the day, no fear of drowning.

Most days, this is impossible. Though they say it's unhealthy, I can't help thinking of myself as a sick person. Even the days when my body cooperates, when the MS seems to be hibernating, there's the diabetes, which means knowing the exact level of sugar in my blood, controlling my chemistry with juice and insulin, paying keen attention to each stutter, shake or hunger pang that may mean danger approaching. It means always carrying a blood test kit, identification, packs of juice, emergency money. It means never having empty hands. I'm connected to a machine—an insulin pump—every minute of my life. It looks like a beeper, except that it's attached to me by a tube I insert under the skin of my
stomach. I can take it off temporarily, for a shower or for a little rest, but for an hour at most, which I stretch willfully like a child stretches the hour before bedtime. When I eat, I must press buttons to tell the pump to deliver more insulin to my body. I must remember to change my battery, change my insulin, change the needle, check for air bubbles in the tube. The skin of my stomach is pocked red with welts, the scars of previous tubes. They take months to heal and disappear; I'm always making new ones. I keep the pump hidden in the waistband of my pants. When I'm hot, it presses sweat to my skin; when I toss in my sleep, the tube tangles around my waist, umbilical, and I dream I'm caught by something dangerous in the cold water dark.

It's a constant reminder of what I'm moored to. It's a constant reminder of what's missing in me, the dead spaces my body makes with its cellular suicides.

The pain I've got no language for isn't the body pain of needles or bones. For that, there's metaphor:
burn grind sting wince. Blood and bruise.
The pain I've got no language for is slow and warm and sweet as lake water, familiar and constant as my own breath. Pain is the pure unspeakable language; my body's untranslatable, dumb.

What kind of numbness is it?
My neurologist is well-meaning, but it's been more than a year since my right hand's come undone. The stunned nerves always vibrate, as if I've banged my funny bone, or fallen asleep on my arm. It's a speechless hand; it feels thick, full of pins, clumsy and foreign. Buttons bedevil me, my handwriting's a messy child's scrawl. By some cosmic joke, it can still feel burn, cut, sting, but not a silk skirt, not the stroke of skin. What do you call that kind of numb?

I call it sorrow, anger, fatigue. When I stumble to keep up with friends in the street, when I hide inside on sunny days because the heat makes my body senseless, when insulin reactions come three in a row to send me shaking, nauseated, weak-legged down, I name it grief, dread, loneliness. I name it humiliation.

When we lie curled together in the sea-dark, my lover traces gooseflesh along my clavicle, her bare-legged beauty glowing like milkweed in the half-light. She tugs at the little tube that snakes between us and she whispers:
Why don't you take it off now and be a real live girl for a while?

Eighteen months ago—at the age of twenty six—I was diagnosed with cancer. Since that time, I've had three major operations and several months of chemotherapy. I have also experienced numerous other, perhaps less obvious, effects of having a serious, sustained physical health problem: navigating through a purposely disempowering world of doctors, treatments, and hospitals; being truly faced with my own mortality for the first time; losing control of my body; reorienting how I thought I was going to be able to live my life; having the constant threat of complete financial instability; and feeling more scared, confused, and vulnerable than I ever thought possible.

Throughout this time, I've been on the receiving end of a wealth of support from family and friends; this support has made it possible to live through this experience instead of being overcome by it. However, I've also experienced numerous instances in which friends—including many within punk/DIY/activist scenes—have not known how to respond and, in some cases, have not responded at all. Upon diagnosis and a later recurrence, friends I knew for over a decade were barely able to say more than a few words to me; others who I had more recently become close to suddenly drifted away.

In talking to many other people struggling with illness and disease, I've found that the experience of having a health crisis compounded by a lack of support, if not abandonment, is not uncommon. This can be more terrifying than the illness itself.

It's important that those of us within radical/DIY scenes address how we can better support ourselves and our loved ones as well as how we can reconstruct our communities to better address issues of care and support. This article is meant to initiate a dialogue on the issue of support and physical illness by addressing some practical aspects of what may work well and less well in providing support to someone with a serious, sustained physical health problem (in particular, this article focuses on when that person is someone you would consider a friend). Of course, every diagnosis is different and, more importantly, every individual is different. While differences in diagnosis, prognosis, age, gender, insurance, culture, financial status, spirituality, personality and your particular relationship to the person will necessitate different approaches and types of support, what follows is intended to be a useful starting point.

I want to acknowledge that I have felt conflicted about writing an article on support, because I immediately thought to times that I have come up short in this area,
not just around issues of illness, but also around the many other situations when support is crucial: friends who have lost loved ones, friends who have had to support members of their immediate family through illness, people in radical circles who have gone to prison. I think of all the times I've made mistakes in how I handled a situation or withdrawn or could have said something different or better. While working on this article, I've come to realize how getting better at support is a process (and not necessarily a linear one). These situations bring us face to face with our own fears and with the most unpleasant aspects of life, even when we are not the ones directly experiencing them. We face a great challenge when we are bold enough to attempt to engage with and improve on how we respond.

This is certainly true for illness. Illness is considered a private topic. We may not have needed to give any thought to illness and support until we've learned that one of our friends—or ourselves—has been diagnosed. Most of us haven't been raised with an understanding of the complexities of how to respond to a situation such as a friend being diagnosed with a serious illness or disease. I think it's important to acknowledge and appreciate this, and understand that you are in no way a “bad” person if you do not immediately know how to respond and provide support to someone dealing with illness. However, if someone that you care about is impacted by illness, it is important not to be complacent in this position and, if you are able, to try to take the initiative to help provide support.

This can start in simple and seemingly insignificant ways. People who initially find out that a friend has been diagnosed with a serious health issue often say that their mind goes blank when they try to think of what to say and that they fear saying the wrong thing. This often results in the person not saying anything. This, in most cases, is the biggest mistake someone can make: people with illness most often want to talk about it and almost everyone at least wants it acknowledged. Saying something—even something small—is almost always better than not saying anything at all. Most people struggling with illness I've talked to have painful memories of certain friends or community members who never even said any words of support to them or who drifted away from them completely after their diagnosis.

If your mind goes blank, remember what you know about this person. You probably know a lot. That's why she or he is a friend. It can be very helpful to use what you know about your friend as a starting point to think about how they might want you to react and what might be helpful to them. It may also be useful to recall a time that you were most scared and frightened to empathize with what your friend is going through and to think about what was helpful and not helpful to you at that time (remembering, of course, that every situation is different, particularly if your experience did not deal with a health crisis). If you still do not know what to say, then acknowledging this and expressing your desire to nonetheless support
the person will likely still mean a lot, e.g. “I do not know exactly what to say at this time, but I did want to at least let you know that I am here for you…”

While it is important to say
something
to your friend, it does of course matter what you say and what you do. If you feel that you can provide more than just words of encouragement, the following are suggestions about what people often find helpful and less helpful in being supported.

Numerous books have been written on caregiving and all of them essentially boil down to the following guiding principle in providing support:
learn to listen.
Keep your ears and eyes open and listen to what your friend says. Your friend will most often serve as your guide in helping you to better support her, so long as you actively listen. Listen without judgment, interrupting, or feeling like you have to provide an answer or solution. Also, if you still do not know what the person wants or needs, do not be afraid to ask, instead of assuming.

You may find it useful to read about your friend's diagnosis and condition. If you have a better understanding of what the diagnosis means and what the person will need to go through, you will likely be better informed about how you can support them through it. However, it's important to keep in mind that you should always ask permission before informing your friend about any news or new studies and that you should not give unsolicited advice unless it is welcomed by your friend. People dealing with illness are generally flooded with information and juggling various potential treatment decisions. Adding more information or advice without permission can just make the experience additionally overwhelming.

Similarly, if you knew someone who had the same issue as what your friend has been diagnosed with, it may be tempting to use this knowledge to try to provide some insight. This may be helpful, but remember that an experience with one person does not make you an expert in the condition and that every person experiences a diagnosis differently (both physically and mentally). Be careful not to assume that you automatically know what your friend is going through. Also, never share horror stories about someone you know who has had the same or similar disease.