biting into her flesh
the offwhite of her paws
stains from her saliva
marks of her cleanliness
she nibbles on my fingers
when i am flat on the ground
surrounded by nothing
sunglasses hiding the void
the dark that isn't dark enough
her tricks, she tries
she jumps, she carries through the air
onto my stomach
she cleans it with her tongue
and doesn't understand
why i'm not as usual
playing with her ears until she purrs
kissing her nose
making baby noises
i scream a bit
short but loud
to make a headache for myself
and she doesn't understand
and runs away
Your book is about a headache that you've had, continuously, for over a decade. How did it start? Well, my Headache and I are actually celebrating our 15-year anniversary together soon. I think it's the paper anniversary, or the crystal one, I'm not sure.
I have what has been officially classified by doctors in the last decade as "chronic daily headache," or headache that happens at least 15 days/month for at least four hours at a time. (In past decades, this has been called a "mixed headache," meaning a mixture of migraine and tension headache.) Recent studies show that this afflicts 4 percent of the population. I am "lucky" to have the type that is CONSTANT, hitting about .5 percent (about the same number that have epilepsy) of the population. But since chronic headaches are mainly experienced by women of reproductive age, chronic daily headache is thought to happen to 10 percent of them.
When did it start?
I got my first real bad one in the spring of 1991 as I was putting in a contact lens, and the left one seemed to set off a mother of a headache in the left eye and behind it. I stopped wearing the lenses, but then the pain just started happening on its own. Over the course of about six months, it became continuous. But knowing what I know now about chronic pain, I think it had been building up and gaining steam behind the scenes for a while, but it wasn't bad enough to really notice.
Describe the headache for us. How bad is it on a scale of one to ten, and how do you manage it on a daily basis? It's usually moody, largely cruel, and always absurd. It's about a 4 on most days most of the time, fluctuating between 2-6 through the week.
Through the years, I have learned a lot about managing pain and still trying to live life in the present, despite it all. In the book, I call this state of mind, "The Waiting Place." It's when life is not ideal, but you still have to go on the best you can. I have learned how to live in this place through trial and error, the hard way, as I probably have learned everything in life. Much of it has to do with very simple principles, such as getting enough sleep and keeping a slow and not frenetic pace. I work about 4-6 hours/day, at the same time every day, instead of about double that and at all hours, which is what I did before this happened. Sometimes I feel lazy, but I have to remind myself that in some cultures, this would be normal. I'm not a slacker. I'm just acting like I'm Swedish!
As I discuss in the book, I also have been helped in daily life by Eastern philosophy--by learning how to better detach myself emotionally and mentally from the pain. It doesn't always work, and is much easier said than done--but I'm in a better place than in the beginning when I was constantly embroiled in frustration and anger with it. So much of suffering is not just physical pain, but all the meaning we give to it.
What treatments--conventional and otherwise--did you seek? Or would it be easier to tell us what treatments you didn't seek? Yes, to best boil it down I would say I did NOT do:
· Colonic irrigation OR
· Jews for Jesus
I did traditional Western medicine for years (which means, basically, lots and lots of drugs) and then alternative medicine in its myriad forms. The good and the bad news is that when you have a headache, there is an ENDLESS amount of things that you can do about it. Endless. It seems that about everyone I have met gives me a referral to what supposedly worked for them or their cousin or their neighbor. Then I feel compelled to try it, in case it is THE ONE thing I have been waiting for to cure me.
Like most people with chronic pain, I now use both Western and alternative medicine. Over the years, I have learned how to be more judicious with both, to advocate for myself to avoid dangerous drugs and also flushing too much money down the toilet with those thrice weekly acupuncture or chiropractor sessions.
Chronic pain causes more disability than cancer and heart disease combined. Yet we hear much less about it. Why do you think that is? Well, an unfortunate and tragic thing is that there are no famous celebrities with chronic pain--or at least that have felt safe enough to "come out" with it. In this country, no disease is real until a Big Star gets it. I'm waiting for the Michael J. Fox or Christopher Reeve of Headaches to emerge. I was recently excited to learn that the lead singer of the band Wilco, Jeff Tweedy, has bad migraines, but I am not sure if he's a household name. Lynda Carter, who played Wonder Woman in the 1970s TV series, has come out with back pain, but her show may have been too long ago for most folks to remember.
Other reasons why chronic pain is only really coming out now: It mainly happens to women, therefore devaluing it as "real." It lacks drama, like the cancer victim on the deathbed. There are no pink ribbons for us, as public awareness is just starting. No one is running a marathon for me! And it's not necessarily deadly (except, of course, for being a typical motivation for suicide, such as depression is). And, like other neurological problems, chronic pain is a very INVISIBLE form of disability.
Chronic pain as an issue compares most closely to that of depression, which probably was in the same point of beginning public acceptance a decade ago. (By the way, chronic headaches and depression are very similar neurologically, with some just seeing them as two different sides of the same coin.) At that time, depression became more legitimized as "real" because of the effectiveness of Prozac, which showed that this disorder is a chemical imbalance, not the person just being lazy. Also, well-known memoirs, like Elizabeth Wurtzel's Prozac Nation, helped build awareness.
So chronic pain has really lacked that kind of "blockbuster" drug to legitimize us, to also conquer stereotypes (of pain as a moral failing, unique to affluent whiners, etc.). It's true that those with more episodic migraines have gotten some legitimization with the generally effective triptans, which were first introduced in the 1990s. That includes Imitrex, Relpax, Amerge, etc. But those of us with constant headache have not been as fortunate in our treatment.
And all types of chronic headaches, such as migraine, carry much stigma because not only are their primarily experienced by women, but they are made worse by hormones (associated with crazy emotions) and take place in the head (associated with mental facilities).
In general, how well do you think the medical community supports those with chronic pain? With headaches, specifically? I consider this book partly an "exposé" about how completely inadequate pain-care is, including the limited types of drugs that are available--at least over the long term. The over-the-counter (OTC) medications cannot be taken daily, or else "rebound" headaches often occur. The stronger medications, like narcotics, can turn one into a drooling zombie. The daily "preventives" available for chronic daily headache (which I have) are inadequate, typically with lots of side effects and low effectiveness rates.
But many people with pain do not know this, thinking that they are the "only ones" who are "unresponsive" to drugs and "mind over matter." For years, for this reason, I was loaded with guilt and self-blame.
The irony is that modern technology has indeed progressed so much, to be able to fix technical things like excising a brain tumor or re-attaching a severed arm. But when it comes to something apparently simple like a headache, it comes up short. In reality, not only do we need better drugs, but treating pain also requires much individualized treatment, as each case is different. This requires a time commitment for communication between doctor and patient, which is more expensive than just something like giving someone a shot. And research has really lagged behind in this area. While pain accounts for 20 percent of medical visits and 10 percent of prescription drug sales, it only represents 0.6 percent of National Institutes of Health research funds.
According to the Centers for Disease Control, the prevalence of migraine has increased sixty percent over the past decade. To what is this increase attributed? Part of it, I think, is awareness. I think that chronic headaches have not gone up, but awareness of them has. Just like I don't think that sexual harassment and acquaintance rape or people being born gay have gone up over the past decade, but public consciousness of it has. The good news is that younger women (who are at a time of life where people first typically get chronic headaches) now feel a greater sense of entitlement to "come out" about them, not just seeing them as "just life." This is true in feeling more of a sense of entitlement to not be sexually harassed or raped, even if we were wearing "sexy" clothing, or feeling entitled to "come out" about other things, such as being a lesbian.
I also think that rampant use of over-the-counter medications is causing "rebound headaches" in many people, making their pain worse. Oddly, most people do not know about this extremely common effect.
How has this headache changed your life? Your relationships? Having chronic pain influences EVERY aspect of life. Again, I compare the experience of it to depression, where it's something "invisible" and stigmatized that you're secretly struggling with. As far as career, I am lucky that I am in a profession, as a freelance journalist, to be able to make my own hours and work at those times of day when I feel better. As proof that my management skills have improved, my last book took me 8 years, and this took fewer than 2. Overall, I have to just make sure to ration my energy very carefully. I have enough to get by, but no surplus.
But as far as with my personal life, as a single person, things have gotten easier recently. As I get older (I'm 37) I see that everyone has something, some sort of baggage they bring to the table (such as a divorce, kleptomania, being a control freak, some other neurosis). That's a "good" thing about getting older--others are increasingly finding their limits, like me. I'm also grateful that so many men are so self-absorbed that they don't notice when I'm practically doubling over in pain.
An estimated 45 million Americans suffer from chronic pain. According to a 2002 Time magazine article, at least 28 million Americans battle chronic headaches, specifically. What advice do you have for them? For their family and friends? A message to all of them: this is a real neurological disease, possibly a progressive one if not treated properly, and it should be taken seriously. A MAJOR confusion on the part of friends and family is that it is "just stress." This confuses a trigger with the root cause (a neurological over-excitability of the brain). In reality, yes, stress and emotion can make pain worse. But this is like with any other disease, such as diabetes or Parkinson's. The reality is that the person has to have a genetic predisposition to chronic headache. Some people's brains aren't even wired to be able to have headaches at all. And, besides, most headaches do not have any one identifiable trigger (such as stress or eating the wrong foods or weather changes). So too often, too much pressure is put on the chronic-headache sufferer to "control" the environment. This is a double standard that I don't see with other diseases.
In what way is this a women's issue? Like I said, we just have to look at the numbers to see why: In the past decade, new data has become available to prove this, such as the following: