|
When Staton Rabin was three years old, her parents offered to buy her a toy typewriter. She insisted on a real one, and has been writing ever since.
In 1994, while working for movie studios as a freelance story analyst and shortly after completing the manuscript for her first novel, Rabin came down with a mysterious illness. It started with arthritis-like pain in her right knee, and some weeks later evolved into crushing weakness, nausea, fevers, and burning pain in her muscles that she described as “feeling almost like I’d been poisoned”. Within a few more weeks she was mostly too weak to sit up or walk. The illness came in waves-- for hours she’d be crippled by it, then she’d seem to recover for a few hours. Eventually, those brief episodes of recovery stopped happening. Her GP at the time misdiagnosed her with “a virus”, and when she didn’t get well claimed there was nothing wrong with her, unplugged her IV dextrose at the hospital, and had her summarily discharged. “My father visited me in the hospital, at the time. He said I looked absolutely green, I was so ill. Yet that doctor dismissed me.”
Rabin went from hospital to hospital, seeking help and never doubting for a moment that she had contracted some sort of infection. But her symptoms were always dismissed and medical tests showed nothing except an occasional fever. She seemed to recover fully for a few weeks, then got even more ill than before and was virtually bed-ridden. What she didn’t know was that she had just entered phase two of her illness.
Then, one day, a neighbor told her that her symptoms sounded exactly like Lyme disease—an illness that had already infected several people on her block in Tarrytown. A recent California transplant, Rabin knew little about Lyme. She bought a book, COPING WITH LYME DISEASE, and realized that she had many of the symptoms of classic Lyme. She asked her new doctor at the time, who by coincidence happened to be an infectious disease specialist and head of the Lyme program at a major New York City hospital, if she would test her for the disease. The doctor refused, saying that she “couldn’t possibly have Lyme.”
By this time, Rabin was so weak she was completely unable to work. But, knowing that she was gravely ill, she kept up her search for a proper diagnosis and treatment. She managed to get in touch with the local Lyme group president, the late Betty Gross, who recommended that she see Dr. Daniel Cameron in Mt. Kisco. Rabin saw Dr. Cameron and his partner at the time, Dr. O’Dell, who agreed that her symptoms were indeed consistent with Lyme, they thought this was a possible diagnosis, and agreed to test her for the disease.
On September lst, 2004, six months after she contracted the illness, her blood tests for Lyme came back positive: eight bands on the Western Blot and a positive ELISA test. Treatment with antibiotics was started immediately. After she had been on oral antibiotics for several weeks, Rabin passed by a mirror while getting out of the bathtub and to her astonishment she saw two, large circular rashes on her back-- the classic, Lyme bulls-eye rash! There they were, like the mark of Cain. Now, she finally had proof of what had happened to her. It is not uncommon for the Lyme rash to recur during the early stages of treatment. It’s possible that the Lyme rash appeared on Rabin’s back shortly after she was bitten by the tick six months earlier, Rabin explains-- but since it was on her back, she did not see it. Rabin notes that, apparently, she was bitten by a nymphal tick in March of 2004 while visiting a farm in Westchester, despite the fact that she had sprayed her pants with DEET insect repellent and had pulled the top of her socks over her pants. She did not, however, ever check herself for ticks-- and that was a fateful mistake. She wryly calls it, “The million-dollar tick,” for all that that mistake has cost her.
“I thank God that I found Dr. Cameron, and that he persisted in treating me for as long as it took to get me back on my feet,” Rabin says now. “Many doctors would have given up on me. Nothing that I’ve accomplished in my life and career since that terrible time in l994 would have been possible without his courage.”
It took a total of 9 weeks of daily I.V. antibiotic treatment to really turn her illness around. By the time she was diagnosed, the spirochetes had clearly already entered her Central Nervous System. As the antibiotics hit each of the “targets” in her body, her symptoms seemed to temporarily worsen, intensifying pain and disability. One day, a side of her face or leg might go numb, another day she’d be stuttering, or have a stabbing pain behind one eyeball or on one side of her skull. Her body would jerk convulsively whenever she drifted off to sleep—waking her. An accomplished writer even before the onset of her illness, Rabin almost completely lost her short-term memory, and was no longer able to reason well enough to do more than write a short letter. The process of treatment was grueling.
“Back in those dark days,” Rabin explains, “Dr. Cameron would patiently take my calls and reassure me as each new terrifying Lyme symptom surfaced. I never knew what would happen next. As a human being, I found this deeply distressing, to say the least, but as a writer, I was witnessing a fascinating phenomenon, as the disease attacked one area of my brain and body after another. I developed dyslexia-- I could no longer spell. I remember I was so dizzy and my sense of equilibrium was so ‘off’ that I’d get seasick in the bathtub, and I was so weak I’d have to crawl out to get back to bed. The worst symptom by far was what’s called ‘Lyme fog’--
|
a physical sensation of swelling in the brain, that feels like a dark curtain has descended and it’s like trying to think through pea soup. I’m not describing a form of depression-- I’m talking about mechanical problems in brain function and a distinct physical sensation of blockage in the brain that impedes thinking and cuts one off from one’s surroundings. When I’d see Dr. Cameron, I would sit next to his desk in an examining room for what seemed an eternity, struggling to find a word or remember what I had been trying to tell him. He’d always wait patiently for me to be able to explain what was happening.
Whenever he was called away to take care of another patient, he’d always come back and check on me and talk to me as long as it took to make sure my questions had all been answered.” What kept Rabin going during all this was the same kind of iron-willed determination that has helped her in her career as a writer. “Being a successful writer means being able to deal with setbacks and failure, and persisting in one’s efforts, so I already had those skills in place. Yes, I felt it was hopeless, at times, when I was trying to recover,” Rabin says. “I was only in my mid-thirties when I contracted Lyme, and here I was a young writer, losing every part of me that I counted on in order to do my work: my memory, my ability to reason, my stamina. Even my ability to sit up in a chair for more than a few moments. I went through this almost completely alone, because most family and friends didn’t know how to deal with what had happened to me. What got me through it was two things: the fact that Dr. Cameron and his wife Joan stuck with me through thick and thin so I was able to be treated long enough to turn my illness around. And my own belief that my life wasn’t meant to end this way, and that every time my symptoms seemed to worsen during treatment, this was a sign the drugs were doing their job. And both those things turned out to be true.
“Having a severe, chronic case of Lyme can be very close to unendurable. And it’s a hard thing to accept that one will never be l00% well, again. I am 90% or more better than when I started treatment-- which means that in a practical sense, I’m l000% better, because I can work full-time at home and have a pretty normal life. I no longer need treatment of any kind. I still get tired easily, so I don’t plan to do more than one major job each day, especially if it involves any traveling. The way I work l2 hours a day, turning out one book after another, teaching, lecturing, writing articles, analyzing screenplays-- nobody would ever guess I wasn’t completely well. I think what’s helped me adjust is that, frankly, I don’t remember what it was like to have the energy I had before I became ill. And my short-term memory loss is fairly mild these days-- it’s only a problem when I get tired. I have limitations, but I’m used to them, and I never let them affect my work. I never miss a deadline, and for exercise I can walk many miles at a time.
I’m so much better than I was, and am able to support myself.”
Trying to keep a roof over her head while all this was going on in her life was a challenge. Of course, the economic impact of having Lyme was catastrophic, so I haven’t quite dug myself out of that completely yet. The social safety net certainly didn’t do what it was supposed to to help people who get ill-- it was too little, too late. My health insurance tried to pull my coverage even though I was paying my premiums. And, as every Lyme patient knows, the system is corrupt when it comes to deciding who gets disability payments from Social Security—Lyme patients are always automatically denied help, until they go through an appeals process that can take over two years and this eventually requires the help of an attorney and a hearing in court. Social Security hopes Lyme patients will give up or die before they have to grant them help.
Even when I was deathly ill, getting I.V. antibiotics three times, and had a shunt in my arm, the folks down at Social Security were claiming I could lift heavy objects and continue to work. What did they think I could do? Be a longshoreman?” Staton says, laughing. “One man who works for Social Security phoned me just to yell at me and try to intimidate me so I wouldn’t appeal my case. Men-- strangers to me—who claimed to work for the Dept. of Social Services threatened to throw out my application for food stamps and vandalized my garden after I insisted on seeing their I.D. before speaking to them when they came to my apartment without notice. This is the kind of thing that goes on when people who are genuinely in need of public assistance try to get help.”
It’s been a long road for Rabin. But now, life is good for her, and she keeps up a work and lecture appearance schedule that would exhaust people half her age. Her novel for kids and teens, BETSY AND THE EMPEROR, has been published by Simon & Schuster, she has two more novels in the works for her publisher, she gives speeches for schools, analyzes over 200 screenplays per year, writes articles for “scr(i)pt” magazine, and teaches writing.
“I have a great life, a busy life, and a lot of friends. I consider Dr. Cameron one of them,” she says. “My one major regret in life is that my illness delayed my finding a husband so I could marry and have a family. Life is good for me now, I’m quite well, and expect to stay that way. So finding the right man is my next project,” she says, smiling.
Click here to view books written by Staton Rabin.
|
Online Extras
