Eric Morse
About 1% of the population have rheumatoid arthritis, or RA. It’s an autoimmune disease that primarily attacks the joints but also does serious and often life-threatening damage to other vital body systems and organs like the heart.
And, as St. Lawrence Neighbourhood resident and award-winning author and photographer Lene Andersen notes, a disproportionate number of RA sufferers are women.
Copenhagen-born Andersen has been in a motorized wheelchair since she was 16, mainly because until about 2000 there was no effective medication for RA. A graduate from U of T in Social Work, she worked for many years for the City of Scarborough until the Mike Harris Tories terminated municipal employment equity programs.
In 2004 she suffered a serious flare-up of the disease, which threatened to bring her life to a crashing halt, and her rheumatologist told her “it’s time to go for the big guns,” a $20,000-a-year medication now used to treat RA early so that fewer people become disabled.
“Because I thought I was going to die. I got my life back, and—it sounds schmaltzy I know—every time I get my shot I send out a silent ‘thank-you’ to the taxpayers of Ontario because they’re the ones who gave me my life back.
“For the first time in my life I responded to treatment, and then I kind of set about rebuilding my life and pursuing my lifelong dream of becoming a writer.”
Andersen’s most recent ebook, Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, came out in paperback in May.
Having had RA since the age of four, Andersen is intimate with pain. She dismisses the notorious phrase “I feel your pain” as shallowly metaphorical at best.
“You can empathize with others, but you can’t feel what they feel and there is no universal, objective way of measuring pain, unlike many other things like blood sugar,” says Andersen, “and this leads to a minimization of the problem.”I Doctors and families fear potential addiction more than they value the alleviation. But the rate of addiction to opiate narcotics is shown by studies to be actually closer to one quarter of 1% when prescribed and taken correctly.”
“When I had my big flare-up, the pain was so bad that I cried in the shower every morning. My doctor then prescribed codeine, and all of a sudden I didn’t cry in the shower any more. But when I told my family and friends about this miracle drug, they freaked.
“You can, probably will, develop a dependence that can have effects if you quit cold turkey, but if it enables you to live your life and be productive, to participate in your community, to laugh every day, to not cry in the shower—if that’s addiction, I’ll take it. You don’t talk earnestly to diabetics about their dependence on the insulin that allows them to live normal lives.”
She recently released a short ebook called 7 Facets: A Meditation on Pain that deals specifically with chronic pain. It is a meditative exploration of the different aspects of pain and what it’s like to live with it. It’s geared towards helping people start conversations about chronic pain in the hope that in the long term, it will be better understood. “7 Facets” can be found at http://bit.ly/1a8DkPn; Your Life With RA can be found at www.yourlifewithra.com.
Andersen is also a long-time photographer: the photographs on her site present a unique view of the world from wheelchair level. She has exhibited twice through Toronto Public Library’s community art program. She lives near the Market with her partner David, a system administrator for Digital Health Images, and their plump and cozy white and orange tabby cat Lucy.
Read a fuller report here: See some of Lene’s photos of the Blessing of the Animals at St. James’ Cathedral here:http://bit.ly/18Z2pjz