ALS Saved My Life...Until It Didn't
by Dr. Jenni Kleinman Berebitsky
Prognosis vs. Diagnosis:
Coming to Terms with Terminal Illness
Page 45- 48
After some self-examination I realized that my physical weakness from ALS was forcing me to be stronger emotionally and spiritually. At that time, little did I know how strong I would become.
If I looked at my situation differently, flipped it upside down and put a more positive spin on it, I could possibly profoundly inspire others. Something as simple as living as normal a life as possible with this disease could be inspirational. The idea I could motivate others gave me purpose. That was huge for me. After all, inspiring people to live a healthy life was at the heart of my studies; maybe this was an opportunity to accomplish something toward a congruent goal. It was in this seminar that I adopted what would become my mantra: “I had to get weak to find my strength.”
My friend Tessa and I attended The Landmark Advanced Course, an empowerment training program. The leader was a petite redhead with a delightful southern drawl who surprised everyone in the course when she turned out to be tough as a drill sergeant. I credit her with nothing short of saving my life.
I remember that each time I stood up to share, no words came out of my mouth. All I could do was burst into tears. The Forum leader told me to sit down. Tessa shared that what she wanted from this weekend was to figure out how to deal with the fact that her best friend was just diagnosed with a terminal disease. She did not mention this friend was me. After attempting several more times to speak but still only able to cry, the leader said, "Sit down and don't bother to get up again until you can talk. You came here to get something out of this weekend, and crying is not going to get you anything."
I reached deep inside and with all the strength I could muster, declared, "I'm Tessa's friend."
At that point there wasn't a dry eye in the place.
“Jenni. Is that what you said your name was—Jenni?” asked the sergeant. “Jenni, you are a crybaby.” The room fell unearthly silent.
I was flabbergasted. No one had dismissed my illness like this before. I had come to expect a degree of shock, sadness, pity, deference and after that, a whole lot of coddling when people discovered I had a terminal disease.
“What? But I have ALS.” I didn’t know what else to say. I was in the spotlight naked and hurt. Angry now, I thought, How dare she call me a crybaby. This is a big deal.
“I don’t care. You’re a crybaby,” the sergeant repeated even louder now. “Do you know how many people I’ve seen with a 'prognosis'? It doesn’t mean a thing.”
I continued to cry. But the sergeant didn’t back down a bit, “When you cry, you are accepting a guess as the truth. You’re letting this so-called prognosis define your future. There is no real truth to this. It’s based on statistics, sure, but no one can tell you when you will die. No one! And when you buy into that, you fulfill the prophecy. And, by the way, everyone has an expiration date stamped on their foreheads—you’re not alone in that—and none of us, not even you, knows what that date is.”
The Forum leader went on to say, "Given your circumstances you have a choice: you can give up, accept your prognosis as the truth and 'die' inside, choosing to just exist until your body dies, OR you can choose to LIVE every minute of every day until you actually do die."
When I finally wobbled back to my place in the crowd after such a dressing down, I was a ragged mess, but my thinking had already begun to shift like tectonic plates before an earthquake, and an earthquake was coming. For the next three days I trained as if for war, ultimately ripping my prognosis apart and upending all that I had been told until I began seeing everything in a completely different way. Then I made a decision to forget what the doctors and statisticians had foisted upon me. I vowed to live my life and stay in the present and not give any more power over to the disease.
Through the course of the seminar, my perception of the Landmark Forum leader transformed. At first, I thought of her as a drill sergeant, but I came to realize she was someone who showed her deep compassion for others by courageously saying what needed to be said.
On the last day, she stated, "No matter what anyone got or learned from this weekend, one thing we can all agree on is that Jenni got her life back, and we were all meant to be here to be a part of that." As mean and abusive as you may be thinking she was, her brutal directness is what I needed to break through the wall of self-pity I was living in. I will be forever grateful.
It’s been said so many times that it may sound hokey, or like a cliché, but I learned that all any of us has is right now, no matter how much we reminisce about the past or dream about the future. We have this moment, and that’s all. I decided then and there to make the best of it.
To seal this vow, the program encouraged me to “enroll my community in my new future, new possibility, and new purpose.” So that’s exactly what I did when this transformative seminar concluded. I called my doctors, occupational therapists, friends, and family—everyone in my circle—and told them about my weekend experience. I explained to them that I had accepted that
I was dying but now was focused on living my life to the fullest. Even though I had no idea what that looked like, I was committed.
I carefully explained to everyone that I needed them to support this decision and agree to relate to me as someone who was moving forward with life—someone excited to take on what is in front of her—not someone with a terminal disease, waiting to die.
And it worked. I had my life back. The months of despondency were over. Sure I have my moments where I think this SUCKS, and I throw myself a huge pity party. But for the most part I have lived my life, just as I discovered I could in those workshops all those years ago.
Reproduced with permission by the authors of ALS Saved My Life...until it didn’t (March 18, 2018, PB & J’s Publishing, LLC).
Special thanks to Hannah Robertson from JKS Communications for her assistance and patience.
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