ALS Warrior Gives Secrets to Full Life After Terminal Prognosis

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Health Thoroughfare Q&A with Dr. Jenni Berebitsky

At age 33, Dr. Jenni Berebitsky was diagnosed with ALS (or Lou Gehrig’s disease) and was given 18-24 months to live. Now 10 years later, Jenni shares her story with ALS through her book ALS Saved my Life… until it didn’t and award-winning documentary “Grateful: The Jenni Berebitsky Story.” No matter where you are in life, Jenni’s story combines self-reflection, radical acceptance, and courage to show us all how we can find the beauty through the pain.  I was very lucky to have a chance to connect with Jenni on her experiences and what anyone can take away from her story.

 Tell us a little about your story and diagnosis.

Obviously, I go into much more detail in my book, but to sum it up: I have lived with ALS for over ten years as my body has become more and more paralyzed. In spite of all the challenges, with the help of family & friends and a good sense of humor, I have been able to: travel extensively, participate in two sprint triathlons, practice naturopathic medicine, write a book, be featured in an award winning documentary along with being a wife, mother, daughter, sister and friend.

 What do you wish more people understood about ALS?

Although a person with ALS may sound and look disabled, their minds are fully functional. You may need to feed them like a baby, but don’t treat them like a baby. Also when you need to do things for them and they seem upset and you may be at your wits end, remember they’re not giving you a hard time, they’re having a hard time.

The patient receives the diagnosis but it affects everyone in their circle. The physical and emotional strain on family and friends who become caregivers often gets overlooked.

 What was your initial reaction to being told you have a “terminal” disease? What does that term mean to you now after 10 years?

I had always been very healthy and took that for granted. Then, with a few words, I was mortal.

At first, I felt a peace, while scared out of my mind. I felt enlightened in the pretense we call life, which left me in the quandary and irony of health.

And then the fear and sadness took over. For months I grieved the life I had lived. I grieved the life I had yet to live. I grieved my regrets and my fears that had paralyzed me before.

 

When I emerged from the fog, with the help of seminars, healers, and meditations, I made a decision to LIVE my life vs just waiting to die.

And now, ten years later, “terminal disease” doesn’t mean anything. We are all terminal. Mentally and spiritually I’ve grown stronger while my body has succumbed to the ravages of ALS.

How do you cope with unpredictable changes in body that require constant shifting of our views?

I’m always thinking. This disease turned on the problem-solving part of my brain or what I call my Inner MacGyver. I’m constantly analyzing and trying to figure things out.

As I become more debilitated, my environment turns increasingly hostile. With each change, it’s time for another inner pep talk. “Come on Jenni, you’ve got to figure this out.”  

“Necessity is the mother of invention,” and inventing is precisely what I do. I come up with ideas inspired by: an educational theory developed a century ago by Maria Montessori, my Naturopathic training, the aisles of the local hardware store, the Internet, as well as friends and family.

 You choose to live “30 minutes at a time.” Can you tell us how this became your mantra?

Our philosophy has been to plan three months out and to live thirty minutes at a time. These have been realistic timelines for us. The three months is not too far, but far enough out to keep us moving toward the future. The thirty-minute philosophy keeps us focused on the present and allows us to survive the inevitable unpredictability of ALS. If we make it through the next thirty minutes we are good. Even though at times it feels like why bother, I keep reaching deep inside to find the strength to stay in touch with what is real and what is needed to take on another day.

Can you break down for us why you chose to title your memoir “ALS saved my life until it didn’t”?

The title of this book started as a joke when I would say ALS was the best thing to happen to my nails and face. I used to be a picker, but now with non-functioning hands, my nails and face are the healthiest they have ever been. But the more I joked about this, the more I came to realize that in bizarre ways, ALS has made my life richer.

My relationships with my husband, my mom and my friends are much deeper and more intimate. But I couldn’t just leave it with ALS Saved My Life because this tale does not have a storybook ending.

What do you hope people take away from your story?

I want people to be laughing through their tears. Don’t get me wrong, ALS sucks! But life can still be funny and beautiful. I am not a hero. Most of the time, I wonder what my life is all about. As I walk the road of my unknown future, moments are monumental. My goal is to be honest, authentic, and compassionate with myself and others because sometimes this is harder than I can bear and sometimes it is a gift from God to be alive. I strive to be present and not take myself too seriously. I hope my life reminds us all of the urgent call to action, to live the life we dream about.

Thank you, Jenni, for sharing your amazing story with us. ALS Saved My Life… until it didn’t is available in both physical and audiobook format. Stay up to date with Jenni at http://alssavedmylife.com/.


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