Review/ A Twisted Fate: My Life with Dystonia
Brenda Currey Lewis' A Twisted Fate sheds some much needed light on dystonia, a debilitating disease that has "turned her muscles against her"
by emil tiedemann
WE, as human beings, are built to take things for granted. We sorta have to, or we'd be in this constant state of awe and appreciation, thanking the birds for their songs, the clouds for the rain, and the people we love just for being them. It all sounds nice, but also kind of exhausting.
It's those simplest of daily activities and routines, from taking a shower to driving to work each morning, that we start to regard as pesky obligations and necessities, even chores. For others, such as Edmonton's Brenda Currey Lewis, there isn't much that is taken for granted.
Lewis has generalized dystonia, a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy. Since she was just seven years old, Lewis has had this rare disease disrupt her chances of living a so-called "normal" life, although it wasn't until months later that doctors finally properly diagnosed her debilitating condition. As of today, there is no cure.
In her book A Twisted Fate, Lewis relives a childhood full of physical torment, psychological agony, and invasive surgeries that never seemed to make any real lasting differences in her condition. Through the years, Lewis has become somewhat accustomed to twisting limbs and extremities that have a mind of their own, eventually confining her almost entirely to a wheelchair.
One cannot imagine the stress and suffering Lewis and her whole family has had to endure over the decades, overcoming obstacles in every facet of their lives. The lengthy hospital stays, the surgical appointments across the country, the lack of access for those with disabilities, the struggles with schooling and transportation, and worst of all, the not knowing.
Lewis,
who seems to tackle each one of her harrowing hurdles with an inspiring
sense of humour, is adamant about living her life as independently as
possible, and refuses to let dystonia take her down. She wants people to
be aware of this obstinate and progressive disease, but also wants to
let people know that diagnosis doesn't mean desolation.
Far from it, actually. Despite the crippling affects and complexities of dystonia - which effects about 300,000 people in Canada and the U.S. - Lewis moves along with her life, refusing to settle for solitude and despair. She's been married, lives independently, served as the president of the Edmonton Dystonia Support Group for over a decade, and spent five years penning A Twisted Fate.
Lewis' memoir not only made me aware of a disease I had never even heard of before, but it also shed some light on my own life and how I've gone so long without truly being grateful for what I have and don't have. I think now I will stop and smell those roses everyone is always talking about.
For more information on A Twist of Fate, click HERE!
by emil tiedemann
WE, as human beings, are built to take things for granted. We sorta have to, or we'd be in this constant state of awe and appreciation, thanking the birds for their songs, the clouds for the rain, and the people we love just for being them. It all sounds nice, but also kind of exhausting.
 |
| It took Edmonton's Brenda Currey Lewis about five years to pen her 240-page memoir depicting her life with dystonia, 'A Twisted Fate.' |
It's those simplest of daily activities and routines, from taking a shower to driving to work each morning, that we start to regard as pesky obligations and necessities, even chores. For others, such as Edmonton's Brenda Currey Lewis, there isn't much that is taken for granted.
Lewis has generalized dystonia, a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy. Since she was just seven years old, Lewis has had this rare disease disrupt her chances of living a so-called "normal" life, although it wasn't until months later that doctors finally properly diagnosed her debilitating condition. As of today, there is no cure.
In her book A Twisted Fate, Lewis relives a childhood full of physical torment, psychological agony, and invasive surgeries that never seemed to make any real lasting differences in her condition. Through the years, Lewis has become somewhat accustomed to twisting limbs and extremities that have a mind of their own, eventually confining her almost entirely to a wheelchair.
One cannot imagine the stress and suffering Lewis and her whole family has had to endure over the decades, overcoming obstacles in every facet of their lives. The lengthy hospital stays, the surgical appointments across the country, the lack of access for those with disabilities, the struggles with schooling and transportation, and worst of all, the not knowing.
 |
| Brenda Currey Lewis in her home, during an interview with the 'Edmonton Sun.' |
Far from it, actually. Despite the crippling affects and complexities of dystonia - which effects about 300,000 people in Canada and the U.S. - Lewis moves along with her life, refusing to settle for solitude and despair. She's been married, lives independently, served as the president of the Edmonton Dystonia Support Group for over a decade, and spent five years penning A Twisted Fate.
Lewis' memoir not only made me aware of a disease I had never even heard of before, but it also shed some light on my own life and how I've gone so long without truly being grateful for what I have and don't have. I think now I will stop and smell those roses everyone is always talking about.
For more information on A Twist of Fate, click HERE!
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