Living life with pain, on camera
01:00 AM EDT on Sunday, August 12, 2007
The Carolyn Lenihan Video holds little promise for major hits on YouTube.
The video is about three minutes long, and the production values alone put it somewhere below a 1968 home movie shot by a tipsy grandfather at a backyard barbecue. The movement is slow, the transitions awkward.
Even Lenihan, who stars in the video with her car, pans this vapid piece of work.
“It’s so odd to me,” she says.
Odd, because she didn’t know it was being shot. But also odd because of the subjects the stalking photographer focused on.
“I didn’t understand that leaving my house to get a haircut was such a big deal,” says Lenihan after a recent viewing of the video on her home computer in Westerly.
There’s something creepy going on here. Lenihan has been trying for years to prove she is disabled by “reflex sympathetic dystrophy,” which is also called “complex regional pain syndrome.” It is a disorder that is all about pain that gradually radiates through the body after an injury.
“Four hours after I get up, my legs feel like they have been run over by a car,” she says.
But as severe and controlling as the pain is, and as certain as the medical diagnoses have been, she continues a long and frustrating struggle to prove that those crushing feelings in her legs and all the other pain that is constantly with her have left her disabled.
She has been dealing with the pain for 16 years. It is 10 years since she has been able to pick up a brush and continue her art career. And it is more years than she cares to remember that she has been going to Workers’ Compensation Court, in the Garrahy Judicial Complex in Providence, for round after round of legal sparring with Aetna Insurance.
It was in court earlier this year that she saw the video and realized that someone had been following her, slinking about with a camera to catch her doing something she shouldn’t be able to do.
There are possibly worse jobs than being a hired video hit man for an insurance company, but none come immediately to mind. Imagine, sneaking about on the fringe of someone else’s life, searching out places to hide and point a camera and turn an unguarded personal moment into a genuine insurance industry “gotcha.”
Lenihan says the video seems to be creeping out her friends more than her. She watches it and can’t figure out what it could possibly prove other than that there are few limits on what an insurance company will do to shoot down a claim.
The video shows her walking into Ray’s Hair Cutting, in Westerly. It shows her coming out and getting in her car. It shows her going to a hardware store, a TJ Maxx. It shows her bringing her right hand over left to close the car door because of the pain. It shows her gray Hyundai a lot. It shows her smiling once, which could be suspect. It doesn’t show her running wind sprints or lifting hay bales.
She says it sometimes seems in the long hassle over her disability case that insurers would prefer that she simply take to her bed with a TV remote and assorted medications.
“But you have to make parts of your life happy and do things you want to do,” she says.
The pain has been with her so constantly and so long that she knows nothing else anymore. So she lives within it.
Her friends call her Tippy, but only her good, close friends. The name comes from the brain surgery she had in 2001 to deal with trigeminal neuralgia, a nerve disorder that causes additional pain on the left side of her face.
“I never regained my equilibrium,” she says. “I bounce off the walls dozens of times a day.”
She holds on to those close friends and the small pleasures of the gardens in her backyard that yield raspberries and strawberries and apricots. In the interest of full disclosure, I left her house with a container of raspberries and some very good apricot cobbler.
She is never still. She is constantly shifting about, trying to find the position that will make the pain a little more bearable. She has to lie down for a few hours every afternoon. And she is wired. She wears a small machine on her waist that sends out electrical impulses to ease nerve pain.
She’s funny too. She once dated an Elvis impersonator, while she was an art student in London, and still gives a special place to the near life-size Elvis cutout in her basement.
Being funny helps when you’re dealing with an insurance company and you find out that a guy’s been shadowing you with a camera. Lenihan has another court date later this month, and she thinks this actually might be the last one, that the evidence that she is disabled is real and easily outweighs whatever that video was supposed to show.
“It’s a grotesque waste of court time and money,” she says.
There is no cure for reflex sympathetic dystrophy. Pain is part of the rest of Carolyn Lenihan’s life. And while she has found, much to her surprise, that there is no such thing as a “permanently disabled” person in Rhode Island, she wants to take her case to the limit. She wants her due.
“I’m a loudmouth and I fight,” she says. “No one will do it for me — that’s been my motto for the last 16 years.”