For going on two decades, Paula Kamen has been managing Chronic Daily Headache and a writing career, which has been a tremendous – yet not impossible — challenge.
Among other accomplishments to date, Paula has authored three published books, one play, and numerous articles – published in periodicals including The New York Times, The Chicago Tribune, and The Washington Post.
Here Paula shares her journey writing All in My Head and learning to manage Chronic Daily Headache and a writing career.
Loolwa Khazzoom: In your book, All in My Head, you describe the day you got Chronic Daily Headache. Please recount that moment.
Paula Kamen: It seemed to start one afternoon, when I put in my left contact lens and felt it trigger a sharp stabbing pain, which radiated from the surface of the eye to deep behind it. It felt like someone had put broken glass in the eye. I took the contacts out, but the pain stayed for the rest of the day.
After that, the sensation happened every time I put in contacts — even though I kept trying new pairs, and the ophthalmologist said the eye looked fine. Then the pain started reappearing on its own, even without any time of outside irritation. It became more frequent and with a longer duration, until it transformed into one constant headache — “The Headache.”
Looking back, I see that I was getting headaches more frequently before the contact lens incident. But that incident was the first time that I really knew something was not right.
I now realize that my nerves in and around the eye were becoming more and more sensitive over time. This is often the case with chronic illness: It indeed builds slowly, but we all have one incident where it seems to have suddenly started.
While my problem may sound freakish, I’m far from alone with what has come to be known as the Chronic Daily Headache. About four percent of the population has a headache every day, and half a percent has it constantly.
Most of the sufferers are women, meaning it’s often not taken very seriously by doctors. And more recent statistics indicate these numbers may be much higher, with women typically underreporting the problem to doctors.
As with many people, my problem came on following a period of stress, when my immune system was down. (I had just finished my first book under extreme deadline pressure.) For others, Chronic Daily Headache happens after a period of illness. Typically, the teens and early 20s – when my Headache began — are when the onset of pain and fatigue happen.
LK: How did suddenly having Chronic Daily Headache affect your capacity to work in general and write in particular?
PK: After The Headache started, I kept seeing more and more doctors and taking more and more medications, expecting my condition to go away within weeks. But the drugs only made things worse: I began feeling hazy and drugged up, as well as in constant pain. Of course, that made writing nearly impossible.
At the time, I had another book contract with a bigger publisher, and the book was due in a year — December of 1992. I did not panic at the time, which was the Fall of 1991, thinking a year was a luxurious amount of time to do a book. I’d done my previous book in about six months, from start to finish.
But the months started to pass. 1991 became 1992, and I became overwhelmed with the magnitude of this problem. It was the first time in my life I was not able to overcome a problem through sheer force of will. It was bigger than I.
Besides, with chronic pain new to me, I had not yet learned how to manage it. Making matters worse, I was relatively unaware of my body, used to living in my own head — a common state for writers.
I did not yet know which behaviors (like staying up very late) made Chronic Daily Headache worse; I did not know how to say no to people; and I did not know how to conserve my energy. I was also in utter denial of The Headache, doing things like planning too many activities, then having to cancel everything else that week when I crashed.
In addition, I was very depressed — as anyone would be, going through such a struggle. This is why the first few years of a chronic illness are often the worst: The illness tears your world apart, and you have not yet made any other structure to replace it.
LK: How did Chronic Daily Headache impact your ability to survive economically?
PK: I was making very little money. I did take on seemingly well-paying freelance assignments for two glossy women’s magazines, but those fell through, as they often do, with capricious editors changing their mind at the last minute about what they wanted. I got two kill fees for 20% of the original commission, which was almost nothing for a few months of work and time spent away from my second book.
I continued freelancing for a newspaper and some alternative papers, which paid almost nothing. I had done that work a lot, before The Headache — while first out of college and living with my parents.
But while trying to support myself, I spent two weeks on one article and only got $150. What’s more, the magazine wouldn’t even compensate me for the book I had to buy to do the article, saying that I “should have that book anyway” in my library. I came to realize that this kind of freelance writing had become impossible once I was on my own.
On top of that, when I could least afford it, my expenses went up — what with all the doctors and tests, not to mention the need for more conveniences. When traveling for work, for example, I couldn’t take an early flight, because I felt worse in the morning; so I’d have to take a later flight, which was more expensive.
I came to realize that with The Headache, I could not support myself as a freelance journalist. Before The Headache, the life had worked, because I was super fast and “productive” – for example, producing a book in six months and living off its $10,000 advance. But after The Headache, my advance for the second book depleted immediately, despite the fact that it was more money than the first advance.
As the months passed, things got worse. I tried other ways of making money, which all failed. The low point was going to a temp job and answering phones, then being demoted to the mail room! I was in great pain that day and couldn’t keep up with the pace of the phones.
My next plan was applying for grants, which ended up being too time-consuming with very little reward. By then, I was getting help from my parents, who are not rich. But they still gave me about $1,000/month and paid for my car and health insurance. I knew I was lucky to have middle-class parents. My writing career would have ended right then and there, if not for them.
I knew their help could not last forever. While I should have been easier on myself, excusing a period of weakness, I hated to be at all dependent on anyone. Since I was in horrific pain, I decided to do freelance transcription, which worked out better than writing. Even when in pain, I realized, my freakishly fast typing skills still worked.
So I spent 1995 starting a transcription business, in addition to a business of lecturing at colleges about my first book on feminism and another business to write much higher paying corporate newsletter stories. I also got off all drugs, which I realized were impairing my writing more than the pain.
The year off writing was successful and gave me a foundation and peace of mind to work on the second book. Since then, I’ve been living on a combination of income from the transcription business, lecturing, corporate writing, and advances from my third and fourth books. The formula always fluctuates, but it works.
LK: In what ways is it freelance writing a disability-friendly profession, for people with Chronic Daily Headache and other disabilities?
PK: Freelancing can be ideal, because you usually can work on your own terms, when you feel best. For example, if you feel worse in the morning, which is common for those with pain and fatigue, work later on in the day. What I found, through interviewing others with Chronic Daily Headache, is that the main variable for happiness in life is being self-employed and having control over when we work.
LK: In what ways is freelance writers especially challenging, for people with Chronic Daily Headache and other disabilities?
PK: Well, you have to be able to say no and to know your limits. That means saying no to an entire job you can’t handle, or saying no to turning in an assignment earlier than you had originally agreed. That can be challenging because any kind of freelance work is often feast or famine, and it could be hard to turn down a feast time.
LK: Is there anything else you want to say to freelance writers with disabilities?
PK: Figuring out the balance between writing and income-earning is always a work in progress, even by the day. You have to constantly adapt to external forces, such as personal connections, fluctuating energy levels, the market, your interests, a greater new expense you may have. Don’t see that as a negative. That’s all just part of the process of living life more on your own terms and setting your own boundaries.
Paula Kamen, a Chicago-based journalist, is the author of All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable and Only Slightly Enlightening Headache, and most recently, Finding Iris Chang (on bipolar disorder). Her website is paulakamen.com.