My doctor called me back today with the results on my blood work. He said, “You’re cholesterol
looks wonderful.” Count is strong, thyroid is fine. Apparently, my blood looks great. He
definitely heard the defeated sigh that accompanied my thank you. I’m truly thankful that
the blood work is looking good. I am. But you see, there’s this thing about chronic ailments,
the pains we can’t identify but know very, very well. You just want answers. After so
long without one, you can feel yourself start to pine for it. Give me a reason for this.
Another result labeled “normal” means the search continues and you realize it may always continue.

Something’s changed over the past few years. Part of it is getting older, time elongating behind
me(20 years with this and the clock keeps ticking); another part is therapy and all the work
I’m doing to make things easier. Changes have been made, and I’m stepping forward to
more…and more, and more. In simple terms, I’m tired. I’m exhausted with fighting the
head pain so much, but I’m stubborn, and I want something better for myself. My life is anything
but wasted. I used to criticize myself for getting so caught up in moments…as
I get older I cherish it more. Despite the hard parts, I want my gifts. If it is intensity, so be
it. The writing? I’m on it. All I can do at this point is magnify the good–when it hurts to
get out of bed I must remember that I want to get out of bed. As for the migraines…
I will continue to work on myself, emotionally, spiritually and physically. If one
fears the body because the body hurts, then what better way to conquer it than by presence?
I will do what I have to do to survive. I want a full life, not half.

I’ve been reading “A Brain Wider Than the Sky” by Andrew Levy, a migraine sufferer, and it’s a
wonderful discovery. As I’ve explained to a few friends: it’s like speaking a completely different
language for most of your life, and people can only sort of understand you. And then you
pick up this book, written in that very language. The relief is monumental. All of the sadness
and struggle makes a bit more sense when you realize that you aren’t the only one
living it. Chronic illnesses can be a lonely thing. Stuck between wanting to be brave and
hoping nobody ever sees you hurting. How do I explain pain to someone, a hurt so bad that
my body disappears. Levy’s words remind me that it’s okay to want to express it.
Expression, I realize, is a key factor in making myself well.

After work today I’m going to go home and find something to break.

I did not think I could feel any worse about having a chronic illness. After a morning spent crying at my desk and in the
bathroom at work, I see that I was wrong.

So after 4:30pm I’m going to find somewhere to go and break something. I have no words, other than that I feel like a
swirling shitstorm of “I-give-up” and anger. I’m tired, and tired of being sick and tired, and tired of being tired of it.
So what to break? Dishes? Glass? Maybe I’ll just go for a run until my lungs explode. The edge of the earth must be
somewhere.

I’m awake. After hours of a manmade sleep. It is like going to bed in an actual bed and waking up on a piece of
driftwood in the middle of the sea. You know, drifting. I couldn’t make a fist when I first woke up. Now I can.

I woke up with a migraine and tried to be tough. Pleaded with the head and limbs to behave long enough for me to
get to work and do my job. Bargained with the self. Okay, so you have class tonight. Forget about class. Focus on
getting to work. Get to work. Focus on doing things.

Sat in the meeting with three fingers pressed to the left temple. Pushing and pushing against the pressure there. I
was trying to think past the instinct of getting up and heaving in the trash can. Meeting adjourned and I made it but a
coworker is worried and gives me words of encouragement. Appreciated but I can’t do much with them.

Realize that my hair is a mess. I tied it back but it’s coming loose.

I walk to my supervisor’s office and he already knows I’m sick. I leave for home after a 1/2 day of effort, and every
step on the concrete hurts. I wish I could explain it without sounding silly. It’s a painful vibration from each foot
connecting–the tuning fork travels all the way up to my head somehow. I get on the bus. I spread my scarf out on
my lap because I don’t have a plastic bag and I’m going to lose my breakfast. I’m sitting in the very back, casually
glancing at the others sitting nearby, trying to imagine their reaction to me cupping fabric around my mouth. I play
the little mantra in my head (It’s-okay-it’s-okay-it’s-okay-you-are-almost-home). I thwart the instinct and stumble onto
my street. I am walking like a drunk but I’m sober.

I slept and now I’m awake, reeling in the afterbirth of what comes with the usual. Disoriented and alone but not really
lonely. More like relief, to be honest. I do not want anyone to see me this way, and I’m kind of glad that I don’t have
to call and tell anyone about it. It’s too hard and too sad and “I’m tired of this” roles off my tongue like the easiest
thing. I’m not you–I can’t make it through my Monday. This is the only time I want to be different, something inanimate.

I think about my supervisor bashing FMLA after I told him that it might be my only option in terms of health and job
security. I don’t want to believe his naysaying when it comes to protection. What else can I do? It’s easy for someone
that isn’t dealing with a chronic illness to be so jaded and dismissive. I want to prove him wrong. I’m also incredibly
worried that he is right, that the protection promised will not be for my benefit in the end. I have 3 various doctor appointments
this wee so I will just have to see. Then what? Tests, worry, hope? Waiting?

I tell myself everyday that I am more than pain, more than an illness. But some days I have a hard time listening.
Some days I sleep and I sleep and I wake up on driftwood, and I wait for nothing except an acceptable time to go back
to bed because I don’t feel well enough to do anything else. Afraid to make plans because I don’t want to break them,
afraid to speak because I can’t do shit with your pity.

It’s 8:48pm. I stop here. Reasonable time to retire.

I had another horrible migraine last night. I managed to keep myself out of the emergency
room by fighting tooth and nail against my urge to go. I woke up with less pain this morning–
less as in I can talk, walk, and open my eyes(which I could not do very well last night), but
I feel like I’m hanging on by a fraying rope. I feel transparent, like I could blow away at any
second. My hands shook while locking my door this morning. I am a shadow of my former self.
Time to call another doctor.

Do me a favor. If you know me at all, please read the following. This is an interview from
KPBS with Andrew Levy, who wrote a book called “A Brain Wider Than the Sky: A Migraine
Diary.” I try and try and try to put what I go through into words, but I still wonder if people
in my life get it and/or understand. I read this interview and felt a bittersweet relief. I can’t
tell you how amazing it is to hear/read someone explain what you know as your day-to-day
reality. I also can’t tell you how heartbreaking it is. Anyway, please read. I’m going to
post some of the interview’s text, and the link for the entire thing. Please, please, read it. Thanks.

(more…)

“Do I dare disturb the universe?”

The line from T.S. Eliot that always pops into my head upon emerging from a bad few days of wrestling with the ebb and flow of a migraine. I’m starting to feel a bit better and the last thing I want to do is disturb that universe and knock myself back into the downward spiral. The nasty sucker started before Montreal departure and is still coming and going two days later. So give me a moment on the posting here. Needless to say Montreal was simply amazing, and it is a city I will return to.

More soon.

If you’re tired of me talking about migraines/chronic pain, you can save yourself some trouble and stop reading now.

Emerging from another warped cocoon–I’ve been fighting the same migraine for days now. Yesterday I had to call in sick and sleep my way out of it. A sleep complete with nightmares that left me waking with the most incredible craving for soy ice cream. The kind of craving that (seriously) brought tears to my eyes.

Wednesday evening in class, a girl sat next to me…the usual girl who sits next to me. She was wearing a perfume too strong for me and the edges of my brain were curling up already–within me a voice gently increasing in panic saying, “Oh no oh no oh no no no…” because I was already there, tipping over a threshold and the fragrance gave one more shove to make it certain. In this mode I’m vulnerable to everything–headlights, heavy foot steps, voices raised, and my god the smells. The smell of perfume, the smell of burning.

After class there is a sweet one waiting for me and I’m fighting the tears and the lump in my throat when I see him, because I have to say hello with “sorry I’m feeling so sick…” and a part of me feels that I’ve ruined yet another evening. The night before I missed my inksister’s reading, the night before that I missed everything because I crashed for 12 hours after work. Can I have my time back, please? Some moments without wincing or wondering when I can feel normal again?

Yesterday, I slept and slept hard. I woke up long enough for bathroom breaks and bread(as the only thing I could stomach), I lay in bed before falling asleep in awe of my left hand in a weird stiffened claw, my confusion, the complexity of walking up and down stairs. Migraines are stupid and invisible–they ruin everything. I worry they are hurting me internally; I worry about “the BIG ONE.” This morning I had a tearful conversation with a co-worker, who also experiences migraines. I have to go back to the doctor. I hate the idea of starting the process all over again–the trials of medications and tests, the questions, etc. I tell my co-worker with careful, slow words: There is a part of me that is ashamed to go to the doctor again, to admit I have an illness because I want my life to be normal so badly that I am constantly rebelling against the idea that this is a part of me and I have to address it. I am scared to go on medication for good. I am scared to go through the process and once again receive zero answers. I am scared to be disappointed by the question mark. I’m scared to hear “There’s nothing we can do for you.” I’m scared to have another one. I’m scared to admit all of this. I worry that my friends think I’m a flake. I want to quit acting like a stubborn teenager about my pain–quit doing the things that do not help.

I’m going to just suck it up and go back to seeing a professional. It’s a tiring process but anything is better than letting it happen to me. So it begins. I’ll keep you posted.

So I heard a poem tonight with an all too familiar ring to it. The kind of thing that could have spilled from my own mouth. Not exactly, but pretty damn close. Immediately after the poet read her last piece for the evening, I jumped up and went to her, squishing past the thrones of students to touch her elbow so she would turn to me. I started in right away:

“Hi, I enjoyed your work immensely. Do you suffer from chronic pain?”

She squints at me, because I’m talking fast and direct. “Pardon me?”

“Do you suffer from chronic pain? I thought that one poem…”

A light appears, she nods. “I get migraines, yeah.”

“That’s what I thought. I’ve had chronic migraines for twenty years…”

And I’m kind of gushing at this point, trying to express how much it meant to hear a poem like that. I admit to her how scared I am to write at length about it, even more petrified to share it with others on a microphone. She nods and seems to understand. I say that much to her and then start to pull away, afraid that I approached her with too much. I just couldn’t hold back my feeling of…relief, I guess? To hear someone say it. To be encouraged and inspired by that. Her poem made my eyes well up, because I do not feel that brave yet, or else I am and I just haven’t found the means(or the time, or the space, or something) to tap into it yet.

I have so many feelings about it. It’s all I could think about on the ride home. It was so nice to hear someone else share perspective on the experience. It isn’t something people really talk about because I think sufferers build themselves to protect it, and there is a weird shame/embarassment involved with being in pain that I can’t even begin to assign words to. Hearing one person’s poem about it on a Tuesday night is not enough, I know that much. I’m glad I could relate, and I’m glad that it moved me and I’m content with my approach to her afterward. But my story and mine, it is still trembling in a weird self-contained casing just under the surface, a raw egg dropped in a pan with the heat still off. Just waiting there slightly shaking. It’s not going to speak itself.

I tried once, at an open mic not too long ago. It was a weird situation. I didn’t feel heard. It’s a two part feeling. One, I do not feel that I expressed it to my full ability. I’m still working on that. Two, I think it wasn’t necessarily an issue of people not listening, but more about me paying more attention to what happened in the air after my sentences. In some way, a way that I cannot explain, I expected the sky to split. I expected the earth to take away my feet. In some tiny weird way, maybe I expected that release to be ultimate. I have to realize that speaking about it isn’t going to absolve me of the illness. It isn’t going to take it away completely. That isn’t the aim, it isn’t the bulls eye. Speaking out is about awareness, wrapping my own head around it, letting other people in when sometimes I’d rather push them away. These are hard things to admit. When all you want is understanding, why would a person aim to be separate, for distance? It’s all a part of grasping how I feel about it. I seek a personal relief, and it doesn’t have to be(and isn’t going to be) grandiose. Maybe in segments and fractions and glimpses, and I’m okay with that. I’m beyond okay with that.

Another day. The head pain continues. Ugh this is just getting ridiculous.

I am finally sitting upright, recovering from another migraine, this one pretty bad. I’m tired and weak and I don’t really want to talk about it. I have a poetry gig tonight and most of me doesn’t want to do it…I just don’t feel up to it, honestly. The rest of me says I have to, because this is what I love and this is why I’m fighting to feel better today.

I’m feeling down. I usually, almost always, feel down after a bad migraine. Serotonin, you know. The best and worst chemical in the body. It’ll pass. And come back. And pass again.

I really feel like it’s something I should read about tonight. I’ll give it a shot. See what comes out on the page. Hopefully something. At least something to make me feel not so…defeated, I guess.

some of today’s migraine, defined:

The vertebrae jacket goes to coat check. A woman accepts it with wrists stunted by talons, iridescent nails like blue orb like moon, cataracts. Her clavicle boasted speakeasy for insect eggs. High pitched tines, as if on plate, stunt the crowd noise. Two palms to your ears. Ladies and gentlemen, be still the drums. Our guest of honor enters.

A fire in heels, the arsonist’s wet dream. Stale shotgun hit for the recovering, their fortnight reached. A thorn carrying a switch blade makes the incision. The mark is noted at the base of the page, the edge of room near the outlet. By toothpick stretched, lifted and ripped. Sheets of it gone(pair of fingers grip nose bridge).

The kind of infamous that demands you dance. You will never lead. One rotting hand braces your back, presses you close to the light roaring–you close your eyes and try to feel it. For minute, a rhythm. What do we replace this with? Immobility? Arsenic on the air? The lips are gone. the hair is danger. The limbs shake like loose socket bark(the steady death of trembling birch beneath it). How do I say I disappear? How do I say what? A knocking door, a platelet.

Swoon the dear by faking night–pull the shade and dim the world. She screams through old stand-bys(you flip the record and it does not help). The chattering, the chattering–the loop and loop of gnawing tines. Send no letters. In fact, eat your pens. This way you will not be tempted. Pull the tornado to your chest. Whisper the usual:
Rest, you monster. Let me hold you close and hate you.

written because i’m sick of being sick.