I've held off on writing this letter. I was raised in a household where we don't complain about aches and pains; I am supposed to be stoic and able to cope, but I'm beginning to feel defeated by pain. Eighteen months ago I started getting migraines. What started out as a low-grade migraine 15 days out of the month has turned into "Chronic Daily Migraine," in which every day I cope with pain that ranges from feeling like someone is attempting to use a bottle opener to pry off my cheekbone, to a thunderbolt-type pain that blasts along my forehead and makes moving my eyes agonizing.
I've been seeing a neurologist for 12 months. He and I have tried a combination of different drugs, and I've been hospitalized twice to be put on IV drugs that, while I'm on them, control the pain. Within 24 hours of each hospital release, however, the pain is back. After being continually turned down by my insurance company for adequate amounts of migraine medicine (apparently, the powers-that-be at the insurance company believe that people get migraines no more than twice a week, EVER), my doctor put me on opiates. After seven months on opiates, which dulled the pain to a point where I could get work done (I'm a writer and professor), I found that I was losing important things -- my memory, sensation in other parts of my body, etc. -- I chose to detox. Not wanting to go to the hospital, I did it with some medical supervision at home. Cary. It was hell, but I've gotten through it.
OK. Here comes the whining part. As I'm writing this, my head hurts. Migraines, now that they're not dulled by the opiates, have invaded my sleep, and I have awoken several times the past few nights to find myself in the throes of severe headaches. Last night, I dreamed over and over again of killing myself, all in ways in which I rammed myself head-first into something. The dreams were pretty pathetic. The suicide attempts were half-assed, and were clearly my mind's crying out for relief from the pain.
Finally, friends who know that I deal with this think that I'm so "brave," or "courageous" or "amazing." They have had migraines, they say, and those headaches have put them in dark rooms. But Cary, I can't live my life in a dark room 24/7, contemplating nothing but how much my head hurts and hoping that there will be a miracle that saves me from all of this.
I do not believe that pain is our teacher. I do not find it ennobling. Nor do I find it to have religious significance since I am not traditionally religious.
I think, some days, about the opiates. Not because I'm jonesing for them, but rather, because I long for those moments when pain was not front-and-center in my head. Yet, I do not want to go back on them. I just want my head to stop hurting, even as I continue to live a life that, except for the headaches, is amazingly, fantastically good. I love my life. I'm not a suicide risk. But I fear that one day, in an effort to stop the pain, I may drive a pickax through my face.
I Am Not My Migraine
Dear I Am Not My Migraine,
Thank you for writing the kind of letter that almost dares me to respond. Such a letter is both a vexatious provocation and a balm to my soul. Yesterday it was cancer. Today it is migraine. Tomorrow it will be war and sickness and abuse and the slow poisoning of the planet. So it goes. I am grateful, actually, to be reminded of this, to be reminded that I am not the only one wandering around with an icepick in my temple.
So I say to myself, can no one else see the icepick protruding from my temple? Apparently not. So I say to myself, Here we are with our infinite ills, our insoluble problems and our unknowable future; here we are with the giant steel wall that falls in front of us unaccountably on the street as we are walking to the store; here we are with the pain that no one can explain or relieve; here we are alone, without our mothers, without refuge. Here we are again forced back as if by a giant wind into our houses, into our bodies, into the unknowable now in which you agonize with your blinding, dizzying, debilitating migraine...
But there is this, too: The fact that after 18 months you have not found a solution does not mean that a solution does not exist. I know that from inside your migraine my words may grate on your ears. But I will speak of hope. Not a shiny hope, but a dark, wizened hope, the resignation of the hitchhiker in winter, the clear-eyed and modest hope of the old man, the narrowed, knowing, deliberate hope that is the sere ally of the starving. This hope is nothing facile or easy like the California weather but something that echoes what we know to be true: our mortality, our smallness, the certain brevity of our time here and the twisted majesty of this moment. In the dark logic of the salesman and the hitchhiker: Each passing car brings you closer to a ride; each prospect's no brings you closer to a yes. You are moving through an ice storm toward something resembling spring. It may be a long way off but you cannot know how far (or, to my Pollyannish mind, how near).
Pain may be no teacher but pain is reality and reality is a teacher. Even if all it teaches us is our own insignificance, it is teaching us. Our migraine matters to us but we don't matter to the migraine. Our migraine matters to us but it doesn't matter to the child kicking the back of our seat on the airplane. The shark matters to us but we don't matter to the shark. We don't matter to the hurricane. We don't matter to the fire.
Knowing that we do not matter can be a great relief and a route to acceptance. Acceptance can help us stop fighting the pain. The pain is great but the fighting can increase it. So until help arrives, no matter how great the pain, rather than fighting it try to center yourself in the pain. Let it work. Do not fight it. Just let it do its work while you crawl around on the floor searching for the right drugs. Do not fear it. It is nothing to fear. It is awful beyond imagining but it is going to do what it does regardless of how we regard it. So strengthen yourself inside. Find a place of peace while it tears at your head. Find a place of peace while it ravages you.
I accept your exasperation. I know I can seem like a bit of a jerk to someone who is in dire, screaming pain, talking about Buddhism when what you need is morphine. So let me say right now, if you want help with your headache, there is also a wonderful place called the Daily Headache.com that, if you can focus your blurry eyes and prop up your head long enough to log on, will yield much in the way of relief, if only temporary (and what relief, as the Buddhists would remind us, is not temporary?).
As to the nuts and bolts (watch out for nuts!), though there may not be a cure, there are definitely triggers: Nuts, various odors and perfumes, shellfish, chicken, sulfides, certain hormones used in meats, certain raw fruits, onions, garlic -- if you were raised in a no-nonsense family, you might also carry the assumption that sensitivities to certain foods is sort of whiny. But do look into these things and begin eliminating what you can. My wife, who gets migraines, is always testing what she eats for that first glimmer of symptom, and the range of triggers she alone has found is enormous. As for me, I suffer many migraines because I am too stupid to not eat chocolate. Every time it's the same thing: midnight, a chocolate-chip cookie, then two, then three, then six, then a migraine. Also watch for dehydration. Also wind and sun can be triggers. Also too much coffee. Also loud noises, stress, sleep disturbances, too much exercise, sex, allergic reactions to smoke, chocolates, certain seeds and certain wines ... sudden changes in the weather. Cheeses. Eye strain. The sound of George Bush's voice. The world itself at times seems nothing but one huge migraine trigger. Also emotional trauma and upset. Driving. Anything can do it.
Your neurologist may be of great help, but do not stop with one doctor. The Daily Headache advises us to consult not just a neurologist, but a headache doctor. And can I just say, before going on, that the Daily Headache is just really amazing? It is the place to be for headaches.
The approach of Chinese medicine is worth looking into as well. Here is more on the Chinese medical approach to migraines. And I have occasionally found that at the outset of a migraine some time spent in a sauna can head it off. Not always, but sometimes.
If I find out anything else, I will let you know via the newsletter.
Meanwhile all I can say is that my heart goes out to you, my friend and fellow migraine sufferer. Please do not drive a pickax through your face. It might feel good at first, but later it will hurt.
"Since You Asked," on sale now at Cary Tennis Books: Buy now and get an autographed first edition.
What? You want more advice?