Songwriter Lara Ewen was once told that she “cursed like the Devil’s whore.” It was meant as a compliment. In swearing or in song, Ewen’s wordplay wields a visceral punch. In 2008, Ewen had plenty to curse about: after some mysterious tingling and numbness in her extremities landed her in the hospital, she was diagnosed with multiple sclerosis.
MS is a disorder that inflames the myelin sheath, a fatty insulation that protects neurons and helps to conduct electrical currents along the central nervous system. In MS patients, the injured myelin forms a scar-like tissue called sclerosis, which inhibits the neurons’ ability to conduct electricity, disrupting communication between the brain and the rest of the body. Symptoms vary so widely in type, duration and severity that proper diagnosis can take years. As the sclerosis builds it can leave lesions anywhere on the brain, spinal cord and optic nerve, resulting in everything from muscle spasms and balance problems to cerebral disruptions that can cause memory loss, speech problems or decreased sex drive. MS can leave you blind one week and fine the next. It can paralyze you for months and then disappear. But it always comes back eventually. And it always gets worse. There is no cure.
Following her diagnosis, Ewen was instructed to self-inject a weekly needle of Avonex, a manufactured form of interferon, a protein produced in mammalian cells that aids in inter-cell communication. Side effects of Avonex effectively gave her the flu for three days – every week. The hope was that the Avonex might slow down nerve degradation and prevent relapses. Might—that’s all the hope she was supplied.
In 2009, Ewen invited me to photograph her injecting herself. I agreed immediately. I’d shot her for an album cover several years before; she was a wary subject but we had established trust and were both pleased with the images that resulted. I met Ewen at her apartment for a warm-up so I’d know what to expect in the studio. She’d lost some weight but beyond that there were no outward signs of her disease.
A year into the self-injecting ritual, Ewen was a dab hand with a syringe. Her dread was palpable but didn’t influence her efficiency as she plunged the two-inch needle into her thigh until it disappeared from view.
Our official shoot fell on a pure August dog day. A single floor fan and some cold water were the only relief from the heat. Ewen acted as her own stylist and had sourced a rack of vintage lingerie. We couldn’t bear to steam it. The humidity was already oppressive.
First we shot some glamour pictures for an upcoming group show of local musician portraits. Then it was time for the main event.
By the end of the shoot Ewen was prostrate on the couch, trying not to vomit as the effects of the Avonex overwhelmed her. As if weekly flu symptoms weren’t enough, Avonex lists depression and suicidal thoughts as potential side effects. In real-world terms, this means that it exacerbates the existing depression that naturally results from living with an inexorable illness that also degrades your cognitive function.
After years of losing half of every week to her meds, Ewen read a new study that found while Avonex does reduce the number of relapses, it does not in fact slow down the progression of the MS. This was her breaking point. She announced to her doctor that she was done and went off the interferon. The price had become too high.
Months later, despite suffering a relapse, Ewen found herself confused by her own happiness and realized the cloud she’d been living under wasn’t because of MS—it was due to the medicine. Initially she felt betrayed by the “sadists” who prescribed her a half-life, but now she is simply relieved not to be depressed. Stopping the injections was like breaking up with an abusive boyfriend, she says. The cloud had lifted.
At the beginning of the summer, Ewen’s doctor informed her that the FDA had approved a new experimental therapy, this time in pill form. This new medicine, Tecfidera, made Ewen vomit every day for two months as her body adjusted to it. Four hours after taking the pill, which she ingests twice a day, she breaks out in a sunburn-like rash. The treatment occasionally causes cramping and diarrhea. Because MS is thought to be an autoimmune disorder, with the body over-enthusiastically attacking itself, any treatment necessarily lowers the white blood cell count, rendering the patient extremely vulnerable to outside illnesses. Ewen could relapse from a mere cold. There are, however, no depressive side effects with Tecfidera. And no needles.
Ewen is sanguine about this new treatment. It is, she says, as much a matter of faith as anything else. Her hope is the Tecfidera staves off the progression of the MS until a true cure is found. Taking meds makes her feel like she’s doing something, and these new pills are the best something she’s found so far. It beats stabbing herself.
Meanwhile, she has her life back. Her new album “The Wishing Stone Songs” was released on iTunes September 20. Ewen is reluctant to become known as “that musician with MS” but her experiences can’t help but bleed into her work. “The Hospital Song” asks:
“Is it all right if I shut my eyes/and wait for the part/where the skin breaks?”
In the single “Death Better Take Me Dancing,” the tune is defiantly jaunty as the chorus intones:
“I want to go out dancing/When I fall from grace/just dip me into my resting place/I’m going to go down swinging/and stomping and stamping/Death better take me dancing.”
Ewen currently strives for an “impossible peace” with her disease. Healthy people constantly want to know what an infected person did wrong so they can reassure themselves they’re not at risk. Fear of mortality induces the delusion that by modifying our behaviors we can somehow stave off death. Ewen has fielded pointed questions about her childhood (did her mother breastfeed?), her diet (does she drink soda?), her exercise regime (does she walk enough, or take cabs?). She is regularly told by well-meaning non-doctors that if only she would juice fast/take the right vitamins/exercise more, her MS would go away. She’s developed a thick skin. The truth is, you can do everything right and still get sick. For now Ewen is content to be doing the best she can.
“I have to hope that this is working,” she says. “I have to believe.”
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Emily Raw shoots artist portraits in Greenpoint, Brooklyn. Her work focuses primarily on the nature of image, both picture and persona.