How ALS Saved My Life until it didn’t
Storytelling is an art, and when you only have 17 minutes to tell your story, you better be good, darn good. The film, Grateful – the Jenni Berebitsky Story, is exactly that; it beautifully captures the bright and shining light that is Jenni Berebitsky. Intrigued by Jenni after seeing the film and spending time with Joyce, Paul, and Amy during the GIFF in June 2019, I then read Jenni’s book, How ALS Saved My Life until it didn’t. (Read more about the film in the Performances section.)
Imagine for a moment what it must have been like for Jenni to go from being a healthy, active, athletic, 33 year-old woman, newly married for 2½ years with an infant son of 15 months and being diagnosed with ALS (Lou Gehrig’s disease), and how your world would be turned upside down and inside out.
Married in September 2006, diagnosed in March 2009 and given a prognosis of 18 – 24 months to live, was like running full throttle, head-on into a brick wall. Now what? After the initial and "normal" reaction of self-pity and worrying about the future and the what-ifs in life, would she be around to see her son’s third birthday and other milestones, etc., she attended a seminar by Les Brown, who told her, "Doctors will give you a diagnosis; only God can give you a prognosis." That statement was life-changing for Jenni, shifting her focus from what she could not control, the future, and instead focusing on the here and now, living and enjoying the moment. If you or someone you know needs some support or a figurative kick in the pants to remember to live in the moment and enjoy today, this book will be an inspiration.
The philosophy of living in the moment has served Jenni well, having lived well beyond the doctor’s initial prognosis of 18-24 months in March 2009. As of this writing in June 2019, Jenni has surpassed the 10-year milestone living with ALS, the last 3-years as a Hospice patient. Her life and the life of her husband, Jeff, son Philip, and mother, Joyce, as well as family and friends, has changed dramatically as her body started to slowly deteriorate over the years. However, even as her needs have changed, her loving, funny, candid spirit continues to shine through in her voice.
How ALS Saved My Life until it didn’t
Joyce Kleinman, Debra C. Argen, Edward F. Nesta
Jenni’s book is not only a guidebook for those with ALS or other terminal illnesses it is also addresses the needs of her family (her husband, son, and mother) and how their roles have changed. Their chapters in the book act as a way to help others on the same path.
Always a fashionista, Jenni provides great fashion tips in the book including how to discretely and fashionably hide a feeding tube in clothing, attach light-weight keychains to zippers to make it easier to insert a thumb or finger in the large ring to pull them up, and many more creative ideas that make life easier while adding personality and style. The book also provides excellent techniques and tools, sage advice, and helpful resources to patients as well as caretakers.
How ALS Saved My Life until it didn’t is a book that made me cheer for Jenni Kleinman Berebitsky and her amazing spirit and the remarkable people in "Jenni’s village" of friends and caretakers.
The book is available for purchase on: Amazon. ISBN 9780692066690
Information on the film: IMDb
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