"18 to 24 Months to Live"

Dr. Jenni Kleinman Berebitsky shares why honesty is important to living with ALS.

Honestly confronting mortality as a human is psychologically challenging—especially when faced with a terminal illness.

This topic has been especially relevant to my life of late as my mother, Dr. Karen J. Warren, faces her own mortality.

This guest blog by Dr. Jenni Kleinman Berebitsky describes the importance of honesty as she lives with ALS. From the initial diagnosis to her current life experience, honesty with herself and close others has been a profoundly healing part of her journey. I hope that others find her story meaningful and motivating.

– Dr. Cortney S. Warren, Ph.D.

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A Guest Blog by Dr. Jenni Kleinman Berebitsky & Joyce Kleinman

"You have 18 to 24 months to live."

With those words, time stopped. I froze in my seat while I struggled to comprehend these words.

My mind started spinning in the void like an out-of-control top: I won’t see my son turn three? I will never practice medicine? What will happen to my husband? What will this do to my mom? What’s the point of anything?

Within minutes, the spinning stopped dead in its tracks. A thunderous rage rose from deep within. I may have been sitting in the doctor’s office calmly, but inside, I was screaming. “This is not happening to me!”

I was 33 years old when I was told I had ALS. I cried. For months and months, I grieved the life I had lived. I grieved the life I had yet to live. I grieved my regrets and fears that had obstructed my growth in the past. I knew that I would bear witness to my body—slowly or rapidly—disintegrating by a fatal degenerative neurological condition.

The loss was painful. Unbelievably painful. To help pass the time (and distract myself), I devoured meaningless television, went out with friends, took care of my toddler son, leaned on my husband, aimlessly walked the neighborhood or sat alone in a coffee shop. I was hanging on by a thread. I was trying hard to live a normal life, but knowing I was dying had me just going through the motions. For months my mood would vacillate from denial to despair like a pendulum. And despair was winning.

I knew I needed to change. I could not do this alone. I needed help to appreciate the time I had left. So, I took a course on personal development. In it, I learned that when you accept a doctor’s prognosis (or guess) as the truth, you’re letting this so-called prognosis define your future. There is no real truth to this because no one can tell you when you will die. It’s based on statistics, sure. But no one knows! The truth is everyone has an expiration date and none of us know for sure what that date might be.

This course helped me see that I had a choice: I could give up, accept my prognosis as the truth and 'die' inside, choosing to just exist until my body dies. Or I could choose to LIVE every minute of every day until I actually do die.

Now, ten years later, this is what I’ve done with those 18 – 24 so called “months to live:” I practiced naturopathic medicine, traveled extensively, participated in two sprint triathlons,  wrote a book, starred in a documentary—all this on top of  being a fun and inspirational friend, a devoted mom, a loving and adoring wife, a supportive and caring daughter, and a proud big sister. All while trapped in the body of a rag doll.

It has been a fulfilling decade, but not without hardships and sacrifices. Saying, “I’ve chosen to live fully every day,” does not mean life is full of rainbows and unicorns. Living each day includes accepting hard losses such as the vulnerability of being completely dependent on others; the need to overcome infuriating obstacles; weathering emotional storms; and witnessing my muscles slowly melt away. Bottom line, ALS sucks! And yet, particularly since being diagnosed with ALS, I realize the way to stay present in my life is to be honest with myself and the people who matter most. It’s a choice that has to be made every day.

In January 2018, that learning resurfaced in my life. My health declined significantly. I was scared. I was anxious. I was mad. I was sad. But I wasn’t honest. I didn’t share my concerns with anyone for weeks. I wanted to protect them (as well as myself) from the brutal truth that this might be the end. When I finally came clean to my hospice nurse, husband, and mom, I found I could actually breathe better. With the weight of this secrecy off my shoulders, my progression once again plateaued. What I had assumed was the end of days was indeed a deterioration in my breathing that had been exacerbated by withholding this truth from myself and those I love. I’m not saying honesty is what is keeping me alive, but it is definitely giving me a better quality of life. 

By choosing honesty, I am able to embrace and relish in the beauty and humor that surrounds me each day—and I will do so for as many days as I have left. With the hope of making a difference for others, I brought this same honesty, sprinkled with humor, tips and tools, to my book, “ALS Saved My Life…until it didn’t”, and my award-winning short documentary, “Grateful: The Jenni Berebitsky Story”.

For anyone struggling with a terminal illness, may you find the truth in your experience. And share it with those you love the most. Living in the truth—no matter how dire it may seem—is freeing. 

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Dr. Jenni Kleinman Berebitsky is a 43-year-old mother, wife, daughter, sister, and friend. She received her BA in psychology and art therapy from Beloit College in Beloit, Wisconsin in 1998. In 2001, she studied Social Theory at Melbourne University in Melbourne, Australia, and then went on to receive a Doctorate in Naturopathic Medicine from the National University of Natural Medicine in Portland, Oregon in 2007. Jenni looks to the future with excitement and anticipation of new adventures, including screenings of a documentary about her life, “Grateful: The Jenni Berebitsky Story” in film festivals around the world and other’s reading her memoir ALS Saved My Life… until it didn’t. She currently resides in Indianapolis, Indiana. Visit her at www.ALSSavedMyLife.com.

Copyright Cortney S. Warren, Ph.D., ABPP