Jennifer Burke: A Life Less Convenient

by Rachel Baker on May 29, 2008

A Life Less ConvenientRecently, I had the pleasure of reading A Life Less Convenient by Jennifer Burke. I have never read a book that lays out the struggles of an illness as insightful as A Life Less Convenient (ALLC) does. Jennifer Burke deserves a great deal of accolades for putting together this magnificent journey into the love affair a terminal illness has with one’s body. The ex presented in this book is a conglomeration of several people in the narrator’s life over the beginning years of her diagnosis. Her body is taken over and controlled by Lupus, and her relationships provide the emotional support she desperately needs…until her illness reels her back in and continues to destroy everything in its path, including her relationships.

A Life Less Convenient tore at my heartstrings. I saw not just illness, but reflective and insightful understanding of how a relationship had failed. In the matter-of-fact reflectiveness of the narrator, there is no blame. There is just the illness and the way both parties handled it; and that’s it. It just was. After a period of time, the end of any relationship “just was”. There is no innocent party and there is no guilty party. In any relationship, both parties deal with situations the best way they no how – right or wrong, it just ‘is’. Burke does an excellent job using Lupus as the vehicle for getting this idea across.

ALLC is a series of letters to ‘an Ex’. Each letter is in essence a short story depicting a different period of time in the evolution of the narrator’s dealings with Lupus. ALLC gives interesting insight into what people dealing with a terminal illness deals with and I suspect, will be an insightful book for those who love people with some form of terminal illness. Throughout ALLC, Burke has done an excellent job of incorporating fantastic images that portray fear, love, frustration and angst. These images are disturbing to a large degree, but help the reader understand the many facets of emotion involved with dealing with terminal illness. The letters in this book are fictitious in that names, times, situations have been changed or made up. ALLC is the writer’s way of trying to explain what was really happening to her and why its so difficult to maintain healthy relationships when one is battling an illness like Lupus.

Before I go on, let’s talk about Lupus. According to Wikipedia:

Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that can be fatal, though with recent medical advances, fatalities are becoming increasingly rare. As with other autoimmune diseases, the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. SLE can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system. The course of the disease is unpredictable, with periods of illness (called flares) alternating with remission. Lupus can occur at any age, and is most common in women, particularly of non-European descent.[1] Lupus is treatable symptomatically, mainly with corticosteroids and immunosuppressants, though there is currently no cure. Survival in patients with SLE in the United States, Canada and Europe is approximately 95% at 5 years, 90% at 10 years, and 78% at 20 years.

As lupus erythematosus is a chronic disease with no known cure, treatment is restricted to dealing with the symptoms; essentially this involves preventing flares and reducing their severity and duration when they occur. There are several means of preventing and dealing with flares, including drugs, alternative medicine and lifestyle changes.

And the writer’s own diagnosis:

‘When lupus and other shades of illness first hit, I didn’t know
what would be destroyed. When I went to my rheumatology
appointment, I was diagnosed with systemic lupus and
Sjogren’s syndrome. The doctor handed me a pamphlet on
kidney failure and transplants, ordered an echocardiogram for
the lining of my heart, and categorized the loss of mobility and
pain in each joint. I recalled images of tornados passing
through towns, shredding one house and leaving the one next
door intact. No one knew what would be saved. I watched the
illness and drugs pass through my body, wondering what
would be left whole afterwards.’

Burke explains in a honest, open, insightful way all the physical limitations that caused the demise of a relationship:

“We fell apart as my sickie trip set in: there was a tired night here, an aching joint there, and always another doctor’s appointment. Then there was the day I didn’t board the train with you…….I pictured myself splayed on the parking lot, bawling in pain, a chalk bomb mess in the places where my hips and vertebrae should have been. I couldn’t keep up with you anymore, couldn’t take the same journeys that didn’t faze you. I couldn’t be your partner anymore. I couldn’t do this.”

What’s more difficult to understand is the feelings of vulnerability that people dealing with a terminal illness may not be able to explain.

“Time moved. I drove. I knew already, without a diagnosis, that
soon a chafing would ignite in my knuckles and then stab deep
into my hand, traversing longitudes into my wrist, elbow, and
shoulder. Something was new in me, wrong. Random fevers.
Infections. Joints that bulged, burning and ugly. These weren’t
things I would let you find.”

‘But you didn’t call me. You have to call me,’ you insisted.
‘And why would I do that?’
You stared at me.
‘Who wants illness?’ I asked.”

Each letter in ALLC is a little more insightful than the last. Every letter shows incredible growth and insight into the understanding of the human factor and how relationships are affected by different obstacles.

“By this point, we knew each other better, but your
home remained unfamiliar to me, despite my visits. I walked
into closets and whacked my head on things. I shared the
reality of my body more honestly with you, when I understood
what I knew of it. I hid less and didn’t need to leave early so
that you wouldn’t see things about me.”

‘And there was the promise you would break, time and time
again, as I grew more ill, as I tied my hair back more often,
and as you stopped eating, too.’

ALLC would be a great resource for people struggling to understand the emotional, physical and relationship issues involved with a terminal illness, like Lupus. This book has the ability to provide a starting point for open and honest conversation and understanding between both parties involved in dealing with a terminal illness. This book should be recommended reading at the first diagnosis of a terminal illness.

To join in or start a discussion on this book, visit the Old Musty Books book club community.

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