Last week I told a doctor that I felt like the old woman who swallowed a fly. He was not amused.
For the infinitesimal percentage of my readers who do not know the song I’m referring to, here are the basics: “The Old Woman Who Swallowed a Fly” is one of those children’s rhymes that is organized around a pattern of accumulation, like “The House that Jack Built.” The old woman swallows a fly in the first verse, and the implication of the song is that swallowing a fly is a minor yet strangely dangerous problem. The song’s ominous refrain, “Perhaps she’ll die,” is sung for the first time after of the initial announcement that the woman has consumed the insect. Next the old woman proceeds to swallow a series of larger and more predatory animals – a spider, a bird, a cat, a dog, a goat, a cow, and a horse – in hope that these animals will “catch” (and presumably eat? If so, the song reflects some fairly serious misunderstandings about the food chain) the animal that came before it. “She swallowed the cat to catch the bird, she swallowed the bird to catch the spider,” etc. At the end of each verse comes the refrain, “Perhaps she’ll die.”
The first time I saw a rheumatologist, she was not quite ready to diagnose me with fibromyalgia because on the basis of her exam I only experienced pain in ten of the eighteen trigger points, and pain in eleven of the trigger points is required for a positive diagnosis. She prescribed a muscle relaxant, Flexeril, for regulation of pain and sleep, and told me to come back in 6-8 months. I did have a slightly easier time sleeping when I was taking Flexeril, but I woke up mean. Until about noon each day, I yelled and snapped and stormed out of rooms with abandon. Over the summer vacation, this wasn’t a problem, but once the school year started I stopped taking Flexeril and my pain and sleeplessness returned. Upon my diagnosis eight months later, the same rheumatologist prescribed a different muscle relaxant, Norflex, and a painkiller, Tramadol. I took the prescriptions to be filled and remember being overwhelmed that the doctor had ordered 150 pills per bottle of Tramadol, with six refills available. The weight of the prescription bottles as I carried them out of the pharmacy was part of what made me realize that I was in for a very long haul.
About a month later, I saw a neurologist at the advice of my orthopedist, who was concerned about my neck pain and the tremors in my left hand. The neurologist’s office was a veritable Lyrica theme park. I wiped my feet on a Lyrica doormat and my hands on Lyrica towels. I filled out my new patient paperwork on a Lyrica clipboard with a Lyrica pen and watched the minutes tick by on a Lyrica clock. Not surprisingly, this doctor not only prescribed Lyrica for me but also provided me with some free samples from a floor-to-ceiling cabinet that was overflowing with tiny boxes of drug samples. “You will probably experience some dizziness when you take Lyrica,” this doctor said, “so I’m going to give you some stimulants.” She gave me a prescription for Ritalin and a month’s worth of free samples of Provigil, a stimulant medication that is FDA-approved for narcolepsy and dementia but not for fibromyalgia. She wrote me a prescription for Provigil in case I wanted it, but she warned me that my insurance would not be likely to cover it because she was prescribing it off-label.
I distinctly remember sitting in a school assembly during the first week that I was taking Lyrica. Usually, sitting still and focusing on a speaker, TV screen, or other stationary image is very painful for me, but on this occasion I had no neck pain at all. I remember darting my head from side to side and up and down and marveling at the fact that these movements didn’t hurt. But as my relief grew, so did the dizziness and exhaustion that I experienced in the afternoons. I began to think in terms of “the three o’clock swoons,” during which I would collapse – not quite faint, but close enough to be disconcerting – onto the nearest horizontal surface. Fortunately, on most days of the week my afternoon obligation was to supervise the dorm I lived in, so I could rush home from class and collapse on my own couch or bed on at least three days per week. On the days that I had a faculty meeting, parent meeting, or doctor’s appointment, though, watch out. So I cautiously ripped open my stash of Provigil packets and proceeded to swallow the spider to catch the fly.
Is it possible to be both flattened by exhaustion and abuzz with energy at the same time? On this particular combination of medications, absolutely. The stimulant did not counteract the effect of the Lyrica; it simply existed side by side with it. The spider didn’t catch and eat the fly; it introduced itself to it and the two creatures cohabitated happily.
Two months later, when she heard that I was still having trouble with drowsiness, the neurologist disappeared into her cabinet again and emerged with a titration package of Savella, a new drug that had just been FDA-approved for fibromyalgia. “The sales rep just left,” she said, as if this was a good thing. For reasons I don’t remember, she also prescribed a different muscle relaxant, Soma. Like a good patient, I introduced my system to these drugs gradually so I could keep track of their negative side effects, which included a 16-day migraine in the case of Soma and suicidal thoughts in the case of Savella. That visit to the neurologist was my last.
You knew I would get around to the subject of negative side effects, right? Well, here goes. The possible side effects of Lyrica are dizziness (check); sleepiness (check); dry mouth (check); dry eyes (check); vision disturbances (check); weight gain (check); difficulty concentrating; swelling of the hands, feet, face, mouth, lips, tongue, neck, and throat; and suicidal thoughts and actions (Lyrica.com). In addition, once a certain concentration of Lyrica has built up in a person’s system, forgetting a dose can cause that person to have a seizure. This problem is compounded by the fact that one symptom of fibromyalgia is forgetfulness.
My understanding of how my body was reacting to Lyrica over the next two years was complicated by the fact that I was diagnosed in 2010 with Multiple Traumatic Brain Injury Syndrome. The primary loci of my concussions were in my right frontal and parietal lobes, and among the many functions of these parts of the brain are the processing of higher-order cognitive functions like reasoning and working memory and the processing of visual stimuli. So when I had trouble with my vision – for example, when I was driving down the highway and all the trees, buildings, and other vehicles in my peripheral vision were rhythmically vibrating up and down like little pistons – I had no way of knowing whether these disturbances were a side effect of Lyrica or a symptom of MTBI. Similarly, repeated head trauma causes a set of psychological symptoms that are similar to Post-Traumatic Stress Disorder and that include difficulties with memory, concentration, and sleep. And finally, how was I to know whether the weight gain I experienced was a side effect of Lyrica or the entirely mundane consequence of the fact that my lifestyle had become painfully sedentary?
The brain injury specialist encouraged me to take Adderall for my difficulty concentrating. Ritalin had given me a panicky feeling, and I was out of my Provigil samples. My psychiatrist – who by this time was prescribing antidepressant and antianxiety medications as well – added Adderall to my ever-expanding pharmaceutical cocktail. In the meantime, my general practitioner had put me on and then taken me off Imitrex for migraines and had then replaced my Tramadol with Darvocet in order to avoid a negative reaction between Tramadol and my antidepressant. Darvocet gave me heartburn, so she then prescribed Prilosec – another spider sent on a search and destroy mission after the fly.
The song about the Old Lady who Swallowed the Fly is usually presented to children as a goofy, silly song. I suppose child development experts would say that it aids in developing memory or some such thing. But there is also a sense of fear embedded in the song. The refrain “Perhaps she’ll die” is at first alarmist, as swallowing a fly will not really kill you (and I’m sure that if nothing else this song has done little to encourage children to relax and enjoy the out-of-doors) and later unnecessary and obvious, as swallowing a cat, a dog, a goat, and a cow in quick succession would most likely overwhelm the digestive system (although “Perhaps she’ll puke” might be a more medically accurate – though harder to rhyme – refrain than “Perhaps she’ll die”). But the placement of this appeal to our fear of mortality does a lot to explain the hidden agenda of our medical infrastructure. As we all know – but like to avoid admitting – there is no “perhaps” about it. We will all die, even those of us who never swallow any insects, arachnids, or barnyard animals. The song sets up an illogical cause and effect relationship between the things we swallow and our eventual mortality. The word “perhaps” implies that if we are extremely careful and never swallow anything that we should not be swallowing, we might NOT die. Implicit in the song is the idea that immortality might be possible and, moreover, that death is the result of a person’s failure to follow instructions.
When the old woman eventually swallows a horse, the refrain changes. Instead of reviewing all of the previous creatures she has swallowed, the song simply ends abruptly: “She died, of course.” In addition to the suggestion that the old woman’s death is the result of her own stupidity (and not something inevitable that we will all face, regardless of our actions and choices), the song blames the woman’s death not on her original problem (swallowing a fly) but on one of the many treatments she has attempted. As I pointed out earlier, swallowing a fly is relatively innocuous; the human digestive and immune systems are capable of flushing out the fly and whatever contagions it may have carried into the woman’s body. But we live in a world where we are not encouraged to trust our digestive, immune, and other systems as they are made. We are taught to trust doctors and – perhaps more so – pharmaceutical sales agents.
In their 1973 book Complaints and Disorders: The Sexual Politics of Sickness, Barbara Ehrenreich and Dierdre English focus on the last decade of the nineteenth century and the first two decades of the twentieth century as a time in which the locus of social authority shifted from the church – where it had been rooted since the Middle Ages – to the scientific and medical establishment, largely as a result of the transformative effects of Darwin’s theory of evolution and other developments that radically shifted Western culture’s perceptions of the relationship between humans and the rest of creation. The church ensured that humans behaved in desirable ways by using a reward and punishment system (going to heaven or going to hell) and various techniques of social exclusion or inclusion, and humans were taught to view the variations in their fortunes, happiness, and health as factors of sin and virtue. As the medical establishment coalesced in the early twentieth century, forming the American Medical Association in the U.S. and various analogous governing bodies in Europe, the task of regulating human behavior shifted from the church to this community of doctors. It is now the silently acknowledged task of doctors and other medical professionals to tell us whether we are “OK.” Health and illness have replaced sin and virtue as the tools for measuring human lives – and like sin and virtue, these tools grossly oversimplify the reality of who we are.
There is a commercial for Lyrica that plays constantly on television and drives me to extremes of irritation and anger. It opens on a woman in her garden. She is rubbing her shoulders: the implication is that this woman is experiencing so much pain in her shoulders that she cannot enjoy her garden (If only that were the extent of it, I think). “My doctor diagnosed my pain as fibromyalgia, believed to be the result of overactive nerves,” she says, and the camera zooms in on her, penetrating her skin and showing computer graphics of her hyperactive axons and dendrites. If you aren’t paying close attention, you can miss the subtleties of what she says: fibromyalgia is BELIEVED to be caused by overactive nerves. In other words, we have no idea what causes it! As late as the 1920’s, conditions like fibromyalgia were believed to be caused by a tipped uterus or by too much “logical reasoning”! Next, the voice in the advertisement proclaims that “Lyrica can reduce this pain in some patients.” CAN reduce – not will reduce. Imagine the arrogance of Lyrica’s parent company, Pfizer, in running ads constantly on television – not to mention multi-page spreads in women’s magazines – that proclaim that their product can alleviate the pain that is believed to be caused by overactive nerves. While this statement of the medical establishment’s fundamental ignorance is subtle, it is not hidden. If we are willing to slow down and listen to what the advertisements are really saying, we do not need any specialized education or vocabulary to understand that the drug company is telling us that it has no idea what it is doing. We just have to be willing to resist the message that our society has been telling us since we were babies: that we must listen to our doctors and to the people who make our drugs. If not, perhaps we will die.
Ehrenreich, Barbara and Dierdre English. Complaints and Disorders: The Sexual Politics of Sickness. New York: The Feminist Press at City University of New York. 1973.
“Lyrica: Understanding Potential Side Effects.” http://lyrica.com/Answers/understanding-potential-side effects.aspx?source=google&HBX_PK=s_lyrica+side+effects&HBX_OU=50&o= 44962818|221361397|0&skwid=43100000378199181.