By the numbers

Days with pain is one way to measure how I am doing. Average intensity is another. Neither of these take into account other symptoms like nausea, dizziness, etc., but they are an excellent place to start and easy to quantify. So far, December has had a lot of poor head days so numbers like this give me some perspective. The other reason to keep these numbers in mind is that sometimes when Love or I say I am doing "much better" people interpret it as "not in pain anymore" and this isn't accurate either.

I could probably write a whole post about my pain scale, but in general it is helpful to know it goes to 11 and the scale is not incremental but exponential in orientation. That is, new levels are not the same increment apart but rather the previous level multiplied by some instinctive increment in my head. So an 11 is perhaps 3-4 times greater than a 5.

Month - Days in Pain - Avg Pain Scale.

September - 10 - 6
October - 11 - 7
November - 14 - 6

Thankful

“My barn having burned to the ground, I can now see the moon” - Chinese proverb

It is easy for me to lose sight of the good these days, so focused am I on the mess and the disarray of my current life. I am still spending a good amount of time just trying to make sense of things as they are now, how they were in that year I only partially remember and trying to make tentative decisions about how they might be in the future.

There has been so much pain, but there has also been much to be grateful for.

Dianne Sylvan says "As long as you're breathing, the gods are saying, "Try again. You've got time." Her post about this is a favorite of mine. And I have time. Love and I keep saying it to each other - I made it through this year. Whatever happens next, we have come this far.

We. I could not have done this without her. She has been amazing. There was so little she could do for me this year and she did it perfectly. She took care of our home, she took care of Mr. Man, she loved me.

Being in pain constantly, and large amounts of pain at that, makes you crazy. One of the ways that manifested for me was my need to reaffirm that I was not alone and adrift. Love and I have been together over 17 years and through some really hard times. I am as sure of her as I will ever be of any human being. Yet I know I must have asked for reassurance a thousand times. And everytime I asked "Do you love me?" she answered yes. She held my hand through some of the worst of the pain. When I was bitchy and mean and hostile, she didn't fight back, she didn't take it personally. She just loved me through it and kept trying to help.

She took care of herself. This is huge. I wasn't often able to be a support for her in the last year. I can't know how hard it was to stay with me through all the pain. I felt powerless and I can imagine that she felt this way also. There have been times in our marriage where I needed to do the heavy lifting - run a household, raise a child, manage our small funds - by myself while Love took time to focus on her own needs. Now, she was called to do this, not for a little while, but for a year. She could have so easily been overwhelmed and fallen apart, but she didn't. She went to martial arts classes three or four times a week to work her body and free her mind. She reached out to friends and received support. She let herself cry and ask for help when she needed it. She learned to let me know when she just needed a break and to be away from me and my pain.

She is still doing it. I am in much less pain now and my thinking is much clearer, but I am not sure how much more functional I have become yet. She still holds my hand; she still tells me she loves me. We celebrate every good day I have and she reminds me to celebrate that I am doing the work of recovery I am doing now.

She is amazing. Thank you, Love, thank you so much.

Waking Up

I see my primary doctor quite a bit. At least once a month, sometimes more. We also exchange email in between visits. She is oddly motivated to help me. She thinks I am great, a model patient. Because I have so much trouble with my memory of events, I show up at every appointment with a list of what I need to tell her and the questions I need to ask. Every appointment we work through my list, she asks about my support network and then we try to plan our next attempts to stop the migraines. I ask questions, take notes so I can tell others what happened and remember where I need to follow up.

This is what I remember of one appointment. Mr. Man is with me that day, reading a graphic novel while the doctor and I talk. I am trying not to cry as I inform her that Mr. Understatement is no longer part of my support network. He is, in fact, currently not communicating with me at all. She is very kind and that makes me want to cry more. So she moves on to her latest idea. She wants me to try a new drug, a calcium channel blocker that works for some people. I say fine. She just looks at me. Before, I have always asked about side effects, how the drugs might work, and so on. Almost any medication prescribed for migraines has a list of serious side effects. Things like tardive dystonia, seizure, that sort of thing. This time, I don't ask. She says, "You're done, aren't you? You'd let me give you anything now." I tell her I don't care. What did she want me to take now?

And so I started a new drug. The pain didn't stop completely but it dropped dramatically in intensity and frequency. A consulting neurologist made better suggestions about painkillers. Yet, I didn't feel better. Not right away. I waited for the pain to come back. It always had.

I cried all the time. I cried about Mr. Understatement. I cried about the mess my life had become. Sometimes I just sobbed and I couldn't tell you why. I just let myself do it. Days stretched out. Somedays I had a migraine. I took the painkillers. It was manageable. Sometimes better than that. Part of me thought that if I wasn't in pain, I should spring up and get busy putting my life back together, find work, make plans - all of that. The rest of me stared out the window for long periods of time, took extended naps and cried.

Eventually, I (mostly) stopped crying. I began to trust I could make plans to see someone in a few days time and I would be well enough to do it. I kept to my personal practice, ran Iron Pentacle, did metta meditations. I journalled everyday. I read my journal from cover to cover. I wondered about what happened to that woman, her thinking didn’t make a lot of sense. Love was so patient. She said I needed time. I was healing. I didn't know what to make of any of it.

One night, I was walking to the bus stop from a coffeeshop. I saw Mr. Understatement kissing his new girlfriend in the street. They were laughing as I went by; they didn't see me. I had made this man’s life very hard. And he had hurt me in return. Really, I was just happy he was happy. Just deeply glad for him in a way that felt right. And I noticed that my emotional reaction was exactly what I would expect from me. A me that I had not been in some time. I stood at the bus stop and looked up into the night sky. I watched the blinking lights of the shops and restaurants. Like a drunk after a blackout, I took stock. I was mostly safe. I knew where I was. How I got here was going to take some time to sort out. I called Love and told her I was coming home.

Losing My Mind III

And this is the part I haven't told anyone. I came to look forward to the pain. It was mine. It was almost always with me. It was familiar. It was part of who I was. I found myself getting angry when people talked about "when I got better." There was no better, there was only this. I and the pain were one, to love me you had to love my pain. I had developed Stockholm Syndrome with my migraines.

With this perspective, I felt like I was doing better. In reality, I just couldn't see how much I was coming apart.

I would forget to take painkillers. I had stopped resisting, even though the pain was terrible. It simply didn't occur to me to stop it. I have a memory. I hear Mr. Understatement let himself in the apartment with his key. He finds me in the darkened bedroom, motionless and in pain. "Sweetie, what have you taken? ...Did you take anything?" The concept seems so foreign. Take something? Oh, for the pain. No. No I hadn't. He returns with pills or maybe a cannabis brownie. I fumble with hands and lips that seem to belong to someone else so I can take the medicine. Everything outside of the sphere of my pain seems distant and foreign. He presses against me on the bed, holds me and I suddenly remember that I am not alone. That I am connected to him, to the world. We lay in the dark and talk quietly, waiting for the drugs to take effect.

I knew that all the pain was taking a toll on me. On those days when the pain wasn't there, I was exhausted. I felt worn. My pain scale went from 1-11. Previously, anything below a 7 would have allowed me to move about, get things done even. At an 8, I would be slower, but still more or less functional. Now, even a 6 would be cause to lay down. I was being ground down, a bit at a time. Larger pain took everything, smaller pain levels kept the erosion going.

I was anxious all the time now. It manifested in a need to control as much as I possibly could. What blankets I had on the couch, what sounds and lights could be present, the types of food I would eat (mostly cereal, peanut butter, smoothies if the nausea was bad). I held court from the couch in our living room.

Love gently describes me in this time as being "wildly unpredictable and mostly grumpy." I was emotionally reactive to almost everything. I would burst into tears at the slightest upset. Love can call it "mostly grumpy" I think I was mean. I was angry at everything and everyone. No one could do enough for me and I was angry that they would even try. I was angry when they didn't want to try too. Another memory: Mr. Man is throwing up his arms over his head. "I get it." he snaps, "You're upset. I'm going to my room."

Perhaps now is the time to talk about time and memory. It was long a feature of my migraines that I would forget whatever had happened when I was in pain. My mind just blocked it out. That was interesting and ok when the migraines lasted a day or three. I had been in pain for almost a full year now. Even as I recount this, my memory is in flashes, moments not rooted in time. I also wasn't sleeping a lot. Functionally, this meant that days and nights ran together. Events were disjointed and seemed chaotic. It didn't help with the anxiety. It didn't help with the isolation. I couldn't remember if I talked to my friends recently or what we had talked about unless they reminded me. Mr. Understatement and I were struggling in our relationship and I was having the hardest time piecing together why. He seemed to take it as belligerence when I wanted to review or ask for clarification and reassurance. Somehow it never occurred to me to admit I couldn't remember the last time we were together or what we had said last month.

In August, my migraines began spreading out. I would go 2-3 days without pain. It happened more than once. I didn't know what to hope for. My constant companion had become unreliable. My newest doctor was determined and asking me to change medications and treatments frequently. I was afraid to feel hope, but it crept in.

At the end of August, Mr. Understatement decided it would be better if we were not together. I don't remember a lot about September. It is probably just as well. I do know that for two weeks, I didn't have a single migraine. The sudden relief in the face of the emotional pain of losing Mr. Understatement made me hysterical. Pretty literally. I wondered if perhaps there really was a limit to how much pain a human being could take. Perhaps my body understood that to hurt me now would end me. Others were excited, opining that the end of the relationship was just what I needed. Obviously, it had been toxic and the source of my woes. Either way, the migraines came back.

Losing My Mind II

"[Cindy McCain] says one of her first challenges was finding the words to describe how painful the headaches can be. When she first told her husband, a former POW during the Vietnam War, she used a word she knew he would understand.

"Torture," she says. "Being tied to a chair for four days. I can't imagine how unbearable that pain must have been, but yeah, I can, because a migraine may come close."
-People Magazine as excerpted by The Huffington Post


“Suffering is by no means a privilege, a sign of nobility, a reminder of God. Suffering is a fierce, bestial thing, commonplace, uncalled for, natural as air. It is intangible; no one can grasp it or fight against it; it dwells in time / is the same thing as time; if it comes in fits and starts, that is only so as to leave the sufferer more defenseless during the moments that follow, those long moments when one relives the last bout of torture and waits for the next.”
Cesare Pavese (1908-1950)


I had not thought of my migraines as a form of torture before Cindy McCain went on her press tour, but now this has a certain resonance. When you think of my daily migraines as torture, everything that happened next makes much more sense.

First, I wanted everyone away from me. I wanted Love and Mr. Man to pretend I didn't exist, to just go on. I attempted to convince Mr. Understatement to break up with me. Everyone rebuffed my suggestions; they wanted to support me, not leave me. The pain was blinding and felt a huge malevolent storm rolling in to stay. "Save Yourselves!" I wanted to scream.

During this time, the pain was a menace. I felt under attack from this thing living inside my head. I reached out for medical support, but doctors were indifferent and in one case rude. No one who I thought might help seemed to understand the urgency of making it stop.

I was anxious, racing on wheel of either being in pain or being afraid of being in pain. I would make childish bargains with the air. If I did everything right, took all the supplements, rested, ate or didn't eat at all, gave up coffee, then all caffeine, maybe it would stop? Please, I would say to this disincarnate presence in my life, I've been good, please let me have an evening out, please let me see my son's event. When my head was good, I tried to get in all the joy I could. When it was bad...

When it was bad, I tried to hang on. Often the pain was worst early in the morning. Love would wake to find me sobbing on the couch, the pain threatening to split my head apart. She would hold my hand and tell me how much people loved me, that I could do this, that I could hold on. And it helped. I held on, the pain would subside. Increasingly, I wanted someone to hold my hand all the time. I clung to the people I loved like lifelines.

At the same time, it was hard for the people around me to see me in pain. From parents on the playground to Love and Mr. Understatement, I tried to downplay the way I felt. I talked about how much the painkillers and drugs were helping. When I had a day I felt good or even a day when the pain was small, I told everyone how good I felt. I calmly told my therapist that while, yes, I was suicidal, not killing myself was very empowering. By choosing to live, I was affirming that I was choosing to move through the pain and this experience.

My relationship with pain changed. It was subtle; I almost didn't recognize it happening. I told people that I was doing better with the pain. I received a lot of guidance about "flowing" with the pain, about just being with it and not fighting or fearing it. I was trying and it got easier not to be upset to find myself hurting. I learned to take care of myself, to rest, to accept painkillers and a full Netflix queue with grace and compassion for myself.

But I was still riding a teeter-totter. The pain would go up and I would think, let this one be the one that strokes me out and ends this. Then I would quickly recant, no, please don't let me die. Love needs me. I want to see Mr. Man grow up. Back and forth. Somedays this internal tug of war was more stressful than the pain itself. One day in June, I stopped caring. It came like a beautiful gift. I felt peace, it didn't matter if I died or not. I would or I wouldn't, but I couldn't do anything about it. I still see this as one of the greatest gifts to come from this experience. I also remember reading about women in domestic violence situations who stop fighting back. They show up at hospitals without defensive bruising. They too, have accepted that it does not matter.

Losing My Mind I

I can't explain myself, I'm afraid, Sir, because I'm not myself you see.
Alice, Alice in Wonderland

With regard to my mental health, I can say it is like waking up from a nightmare, where you walk around your house touching the furniture to make sense of where you are and what is real. For me, it also reminds me of those days when I used to drink far too much and take drugs that were not prescribed to me. Somedays, after I had passed out not really knowing if waking up was an option, I would suddenly wake up and feel really clear - clean, like everything was out of my system. I would look around at my life and think, "Wow. Well, what the hell was that about?"

I suppose the mental health thread of this story starts back in the summer of 2008. I was down then. The pain picked up in September. As I have gone through the last year in pain, the depression, crushing at times, has woven in and out. There is some biochemical reason why depression and migraines go together. I wonder now if that first bout of depression was really the beginning, a sign we didn't recognize or heed.

The pain picked up in September. My relationship to my migraines and the pain is an old one - 23 years now. I first tried to stop it, to solve it, in my teens. It didn't work and I ended up addicted to opiates. I learned how to deal without painkillers - rest when I could, push through when I couldn't. Sometimes they were worse or more frequent than others but I tried not to let them slow my life down too much.

In September, they slowed my life down. They were much more painful and more often. I was accustomed and comfortable laughing them off with others. I hid times when it was hard. I discouraged caretaking. I didn't want anyone to treat me differently or think of me as sick. But by October, it was much harder to laugh off. As winter came on, more and more days were a question mark = how bad would today be or would I get a break? Still, I tried to deny that anything was wrong. Really, I told myself and others, this was nothing I couldn't handle.

Then January happened. There was no more pretending. It was bad. Pain began to shape my life in earnest. I fought with myself about how many painkillers I could take. For several weeks, I did not have access to anything that would work. Sometimes I could lower the pain, but nothing stopped it. Most days had pain, often more than I had known before. Days without pain were spent in exhaustion, fearing pain's return. I knew that everything had changed.

The Long Walk Back

Platforms by Ani Difranco

Life knocked me off my platforms
So I pulled out my first pair of boots
Bought on the street at Astor Place
Before New York was run by suits
And I suited up for the long walk
Back to myself
Closer to the ground now
With sorrow
And stealth


Where to start? It has been a very hard year. My pain is much less now and much more manageable and my head has begun to clear. I find myself taking stock of all I have lost this year. And I have lost so much - my self esteem, my work, my tiny infant business, my health, my ability to trust my body, my mental health and Mr. Understatement. I am not sure how much I will write out here, but both Love and I think I need a way or a place to talk this all out. Therapy by blog, as it were.

Last September, my migraines got much worse. By January they were almost everyday. They stayed that way until a month or so ago when they began thinning back out again. Right now they are sporadic and managed with daily medication, supplements and four kinds of painkillers. That's the bare bones. I want to talk about the rest of what happened.

So much in my head

There is indeed so very much in my head. Perhaps THAT is what is wrong. I have gotten overly reflective lately, but then I sit around a lot now.

What I know looks like this.

On January 23, I woke up around 6:30 AM, like I usually do. It was a Friday and on Fridays Love takes Mr. Man to school. I got them all out the door in a timely way, took care of my own morning needs and around 8:15 went to what I affectionately think of as my home office and sat down to work. I was a bit behind, like I usually am. I was excited about the projects I was working on, enamored of my clients. The world was a good place.

I had forgotten this detail. There was no coffee. We were out. I could have gone down the street to a cafe, but I didn't. I went without. Made decaf.

I do remember that I was tired. Not even tired, I was exhausted. I was overly fatigued. I was doing the nod like a cramming student or a hospital resident. I could not keep my eyes open. Chat records of the day show that around 9 I left chat to do physical tasks around the apartment in an effort to get moving and wake up. Around 10:30, I gave up and decided it was more sensible to lay down for an hour. I set my alarm for 11:30 PM accidentally, so of course it didn't go off. I slept until 1:30 PM.

I woke up with a migraine.

No reason for this to be worth noting really. I get them all the time. It wasn't particularly bad. I went out, got espresso and a Los Gorditos Vegan Chorizo Burrito (they are magic) and actually worked. Billable hours on a grant, paid some home bills, ordered groceries. I thought nothing of it. The pain was gone by nighttime and I went to bed.

I have been in pain or otherwise ill every day since. Except last Monday. Last Monday I felt good.

Otherwise, otherwise...the pain varies from simply irritating to debilitating to that place beyond the very bad...I am wobbly most of the time, the vertigo is bad and the floor and other objects never seem to be where I left them...the nausea is the most irritating part...flashing lights, momentarily losing my vision, extreme sensitivity to sounds, smells, colors are apparently all part of the package...and I am never the right temperature.

I don't want anyone to ask me how I am.

There are tales to be told about my experiences with the world(s) of doctors, about how beautiful my life is even in this, about pain and illness itself, about grace. They have to wait though. I have so much in my head.