Last week, I had the honor of being contacted by Jen Powley, an amazing and inspiring woman who has spent nearly her entire lifetime battling an aggressive form of progressive multiple sclerosis. She is a quadriplegic, is catheterized, and is on a feeding tube. She had the opportunity to write a memoir and asked if I’d like to read her book, which is due to be published in May of this year, and review it from the standpoint of someone who lives with MS.
I don’t know much about progressive forms of MS–in fact, it’s a topic I try to avoid. It makes me question the legitimacy of this blog and whether I’m someone who can offer substantial encouragement to those whose situations are far more dire than my own. It makes me concerned about what my future could hold, as some RRMS cases turn into more progressive forms later on. It scares me. But I shouldn’t be afraid of what I don’t know, right? I try to live by that philosophy in my day-to-day life, so I accepted.
I read Just Jen: Thriving Through Multiple Sclerosis on a flight to San Francisco and, since returning home, have needed some time to gather my thoughts on what I read without getting emotional…because that’s far from the author’s intention.
Just Jen is written in easy-to-read, but poignant vignettes that, while not necessarily always chronological, weave an intimate and comprehensive glimpse into a lifetime of adjustments and re-acquaintance. Jen, a quadriplegic, shoves into the spotlight many of the things that are so routine and normal to us, we don’t realize to stop and acknowledge them–leaving footprints in the snow, cleaning a litter box, grasping a pencil, home security, travel, swallowing food, having a bowel movement. Throughout the book, she shares examples of her defiance, acceptance, and refusal to allow MS any power.
One of the things that I really enjoyed about Just Jen was her transparency about disability and how it relates to sexuality. We live in a society where those with disabilities are viewed as void of sexuality…or, on the opposite end of the spectrum, they are fetishized. Jen reveals the many ways in which she does not let MS take her. She’s just like everyone else. She’s just Jen.
Despite the book’s subject matter, Jen closes on a message of hope, love, and promise. It’s made me notice life’s little everyday inconveniences and evaluate how I choose to react to them. For example, while I was in San Francisco, there came a moment while hanging out at the hotel pool when, immediately after drying off my feet and putting on my dry socks, I had to run my friend’s phone over to her for an urgent incoming call. There was no clear and dry path from the pool to the hot tub and my socks were sacrificed in favor of urgency. I was irritated about my socks being soggy by the time I waded through the puddles. I had to stop and check myself. I could feel the texture of the tiles beneath my feet. I could discern between the temperatures of the floor and the water. I knew that my feet were wet without having to look at them. And that’s a blessing.
If you live with a chronic disease or you love someone who does, or even if you’re just in need of some perspective, I highly suggest giving this book a read. It’s real and and it’s raw. I laughed, I cried, and so will you.
Just Jen will not appear on bookshelves until May 2017, but can be pre-ordered at:
Just Jen: Thriving Through Multiple Sclerosis (ISBN: 9781552669235) is published by Roseway, an imprint of Fernwood Publishing.
My review on YouTube:
You can also read articles I’ve written for the National Multiple Sclerosis Society here!
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