Dear KOM-ers! We’re so happy to feature a new book giveaway!
Please enjoy this excerpt from “ALS Saved My Life…until it didn’t” by Dr. Jenni Kleinman Berebitsky.
(May is ALS Awareness Month.)
There are 2 ways to enter to win your FREE copy:
- Leave a comment below with your email address (so we can contact you)
- Email us at KOMWriting@gmail.com with the Subject: ALS Saved My Life giveaway entry
Winner will be randomly selected on 5/27/19 and announced on our website and social media. *
Most people know life will not necessarily go as they planned, but what do we do when nothing even goes as we had hoped? In her vulnerable, humorous book “ALS Saved my Life…until it didn’t” Dr. Jenni Kleinman Berebitsky shares her story of life with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease), outlining both the practical and existential changes needed to adapt and thrive in the face of life-altering events.
Excerpt Synopsis: Not giving up on your body even if your body is giving up on you, staying positive and not giving up things you love.
The motion of my life has become a paradox, moving in fast-forward while stuck in pause at the same time. Life events and planning for them seem to move along rapidly. Yet my day- to-day experiences feel like a giant pause button has been pushed. Immobility is beyond frustrating; however, I have found the gift. I feel akin to Shel Silverstein’s book, The Missing Piece. I see things that a body in motion would miss. I experience life with a heightened sense of awareness.
But don’t get me wrong, gift or not, ALS sucks.
I was a fit, health-conscious, vibrant young woman until, without warning and for no reason, I was stricken with a hideous disease that is slowly paralyzing every voluntary muscle in my body. What remains now, in 2017, is partial movement of my left hand, diaphragm, and speech muscles. By some miracle, my smile muscles remain completely unaffected.
I used to be athletic. I loved to swim, hike, run, and bike. I enjoyed being a bike commuter in Portland as well as climbing the steps of Mt. Tabor. I relished being able to push myself to do more. I practiced yoga and GYROTONIC® regularly.
Now I can’t eat, hug, wave, dress, hold a book, sit up, stand up, stir soup, use the bathroom alone, put on lipstick, wipe my tears, scratch an itch, blow my nose, tickle my son or even reach out to hold my husband’s hand. I can hardly remember what it’s like to do those things anymore. Speaking is hard. Breathing is hard.
And yet, I have not given up on my body, even though my body continues to give up on me.
In 2007, I became a GYROTONIC® instructor in Portland. I developed a real love for this form of exercise. In 2010, when we arrived in Indy, I searched for a local gyro instructor. I found a perfect match with Katie at Pilates Indy Inc. As my needs changed, Katie responded and adapted. Katie learned how to be my arms and legs, allowing me to continue to get the full benefit of the gyro exercises.
We had to get creative with transfers when Katie became pregnant. I sought the help of my friend Mickie, an occupational therapist. She taught us how to use a slide board which, by the way, was borrowed from the ALS loan closet. The slide board has been renamed “The Jenni Mover” and has become an irreplaceable tool at the studio.
The early part of ALS comes with a lot of spasms and cramping. I found deep muscle massages to be very helpful in relieving these discomforts. I turned to Donna, a friend and massage therapist, trained in the Pfrimmer technique. First I started having massages once a month; as my disease progressed, so did the frequency. Eventually I needed a weekly massage to remain as comfortable as possible.
Donna’s massage studio was on the second floor, so when I could no longer climb the stairs, we had to become creative. We borrowed another studio that was accessible. Eventually it made more sense for me to purchase a massage table and for Donna to come to my house. Not only does she give me a massage, she has fun adding her special touches as she gets me ready for the day. Having similar tastes, she has become one of my favorite clothing shoppers, scouring resale shops for the perfect “Jenni outfits.” For all these reasons, I look forward to my Monday morning “ahhhhh.”
The final addition to my exercise regime was physical therapy. Once a week, Barb, at Rehabilitation Hospital of Indiana, offers a variety of therapies from ultrasound to much needed stretches, twists, and pulls to keep my over-cooked-limp-noodle body as comfortable as possible.
I have been able to fill my week with what I call my exercise routine: massage and physical therapy once a week and gyro twice a week. I am committed to being as physically active as possible, even if I’m not the one doing the heavy lifting. I do all of these activities without pushing myself to the point of muscle loss like I did so many summers before. I believe that these activities are the reason I am relatively pain-free.
* By entering this contest, you give consent to Kind Over Matter to use your name for promotional purposes on our website and on all social media.