Manage a Writing Career While Disabled

by Loolwa Khazzoom • August 12, 2011 • Writing and Editing Tips

Paula Kamen is the author of four published books, several plays, and numerous articles – published in periodicals including The New York Times, The Chicago Tribune, and The Washington Post. For going on two decades, she has struggled with Chronic Daily Headache, which has made freelance writing a tremendous – yet not impossible — challenge. Here Paula shares her journey writing All in My Head and learning to manage a freelance writing career and chronic daily headache.

In your book, All in My Head, you describe the day you got Chronic Daily Headache. Please recount that moment.

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.

How did suddenly having Chronic Daily Headache affect your capacity to work in general and write in particular?

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 did 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.

How did Chronic Daily Headache impact your ability to survive economically?

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 realized 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 there and then, if not for them.

But 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.

In what ways is it freelance writing a disability-friendly profession, for people with Chronic Daily Headache and other disabilities?

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.

In what ways is freelance writers especially challenging, for people with Chronic Daily Headache and other disabilities?

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.

Obviously everyone’s disabilities are different, but what are some of your general tips for maximizing freelance work when disabled?

  1. Ideally, do something other than writing to earn money, so you won’t burn out when it comes time to your real writing.
  2. The exception to that is corporate writing, such as doing newsletters or corporate reports, which do pay much more hourly than the more glamorous magazine writing, and with less competition. Don’t worry that you’re “selling out!” It’s a means for an end. If you’re really a socially conscious type, you can also do writing for non-profits, such as grant writing.
  3. Conserve your brain energy and be picky in taking freelance assignments. Don’t write just to write. Do an article or book only if you’re really interested in it or if it will advance your career.
  4. Moving at your own pace, without judgment, is the key. Don’t judge yourself as being “productive” only if you work fast. If you work slowly but steadily, you will be amazed at how much you get done in the long-term. This was my style for my third and fourth books, which I actually produced relatively quickly in the long term, although the writing felt slow at the time.
  5. Do not judge yourself if you need financial help from someone like a partner or parent, or even the government. Everyone has a time in their life when they are dependent, but we often forget that. Besides, there is almost no writer who has made it totally on their own; if you peel away a layer, you usually find some covert source of help (trust fund, husband, etc.).

What are your tips for dealing with the uncertainty and fear around being a disabled freelance writer — ie, with no net?

Not having to rely solely on freelance journalism has greatly reduced the stress in my life. This is true even with my third and fourth books, which have gotten much better advances. I know, from the experience of my second book (which I resold to another publisher), that books often get rejected, and then you have to give the advance back. Until a book is officially accepted and published, I see the advance as a loan. I also have less stress knowing that I can afford to stop working on it if it starts to adversely affect my health, which is always the most important consideration.

How and why did you choose to write a book about Chronic Daily Headache?

I saw it as an amazing opportunity to learn more about Chronic Daily Headache — its causes and how to manage it. Before, all books I saw on headaches were by doctors promising relief through drugs, which did not work for me. Or, on the other side of the coin, I saw books by alternative-medicine people who over-promised, saying I’d get an instant cure with their method. In reality, most chronic illnesses are not curable, and people need to learn how to live with their illnesses as best they can.

Some of writing the book was a consumer focus, to keep patients more savvy, and practitioners more accountable to not ripping off desperate patients, who will do and pay anything to get their old lives back. I also wanted to provide comfort to others like me feeling very freakish and isolated and shamed about their problem. While the stereotype of our culture is to blame pain and fatigue problems on the patient being “hysterical,” I saw the opposite, of such people hiding their problems and purely blaming themselves.

In general, how can the struggles and triumphs of living with disability be turned into freelance writing material?

We need much more writing about the daily struggles and triumphs of living with disability. Right now, we only have stories about disability or illness when the person has cured himself (Lance Armstrong winning like, twenty, Tour de Frances, after getting cancer) or killed herself (Hillary Swank character in “Million Dollar Baby,” who couldn’t stand being disabled after an accident).

Chronic illness and disability is a vastly under-addressed topic, which is now starting to finally change with some shame-lifting. In the past, people have tried to hide such problems, but now we’re in a beginning movement to see them not as moral weaknesses, but as a part of the diversity of who humans are. Some people need to work at a slower pace, some are gay, some are black, some are tall, etc. We especially need more first-person accounts about pain and fatigue disorders, which are mainly experienced by women, and have thus been stigmatized as “all in our heads.”

What does it feel like to use your Chronic Daily Headache experiences as writing material?

Writing my book, All in My Head, which was part memoir, part journalism and part dark humor, was vastly rewarding. I know from the emails I’ve received that I’ve reached my main goal of letting people know they are not alone and that there is still hope, even in the worst of circumstances, to have a productive and meaningful life with the pain. I did not offer any miracle cures, but they were still emboldened with the message that life can go on, and be pretty good, even when a cure doesn’t happen. We need more stories out there about people sharing coping strategies and showing what fulfillment they do have, despite challenges. We need to write about what we still can do, not just what we can’t. I also have been very rewarded seeing the parents and friends of those with Chronic Daily Headache reading the book and gaining new empathy and understanding of it.

At first, when the book came out, I admit that I felt very exposed and strange. Because it’s invisible, pain is often not hard to hide from others. And I had been “in the closet” about it for 15 years, with only close friends knowing about it. I did feel most sensitive to being exposed to colleagues, whom you want to see you strong. The toughest moment was a review in a hometown paper, which exaggerated how dependent I had become. In our culture, being dependent is the ultimate shame – more, for example, than exposing any type of sexual proclivity.

But then I was relieved to not have the stress of hiding The Headache. When I went on the book tour for All in My Head, I could freely tell the publicist that I had to set a slow pace and have only one event a day — instead of many, like I’d done with the first two books. That made the tour much more enjoyable, and unlike before, I wasn’t a wreck when I got home.

Please talk more about the ways your reality as a disabled person has become integrated with your work as a freelance writer.

While I wish I never had Chronic Daily Headache, I’m now a much more reflective and empathetic person, which only is an asset for writing. I also am much pickier about what I write about, not writing just to write or even for money. (My other revenue sources take care of that.) I know my energy is limited, so I do only what is worth that energy. That requires much focus and ability to say “no” to some projects. I’m a much better boundary setter now!

Is there anything else you want to say to freelance writers with disabilities?

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.

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Loolwa KhazzoomLoolwa Khazzoom has worked with leading media outlets, including The New York Times, CNN, Rolling Stone, and ABC News. In addition, she has published two books and has lectured at prestigious venues including Barnard Center for Research on Women, the Simon Wiesenthal Center, and Harvard University. Loolwa is passionate about health, music, dance, multiculturalism, and Judaism.

Holistic Media, Marketing, PR

Loolwa Khazzoom is a a public relations manager specializing in holistic media, holistic marketing, holistic public relations, and holistic promotions. Her services include branding and messaging development, image and communications management, website content development and optimization, social media management, traditional media campaign management, book development, and in-house writing and editing.

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