The ALS Game Board of Life

Dagmar Munn avatar

by Dagmar Munn |

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Dagmar Living Well

I’ve always looked forward to December; it’s a month filled with decorations, holiday gifts, and happy social gatherings. But this month eight years ago, I was diagnosed with ALS, so December now marks a sad point in my life as well.

Like so many who live with this disease, I can remember the exact moment I heard I had ALS. I felt as if the rug had been suddenly pulled out from under me. My world changed with no possibility of turning it back.

A new rule

At that low point, a childhood memory bubbled up inside my mind; it was a special rule my father had added to the board games our family played together.

His rule was that, at any point mid-game, he had the power to call out, “Rotate the board!” We dutifully complied by carefully turning the board halfway around. My winnings or points sat with another player while I now had his or her previous scores in front of me.

No amount of pleading, arguing, pouting, or tears would change my father’s mind about the rule. The challenge, of course, was that — good or bad — we had to make the best of our new lot and play on.

The game board always changes

It was a valuable lesson that in life, the game board always changes. In other words, it’s something out of our control, we can’t stop it, and no amount of begging brings the old positions back again. We have to move on, making the best of our changed circumstances and new perspective.

As a kid, I often tried introducing the “rotate the game board” rule during play sessions with childhood friends and was amazed at the different reactions it drew from each player. Some friends took it in their stride, relishing the challenge to try to gain back their advantage. Others flat out objected or became angry, and a few stomped off, refusing to participate.

Over time, I could see how my father’s rule tested our sense of control over change and our reactions to losing control as well as our ability to recover.

This particular lesson helped me through numerous job changes, cross-country moves, and relationship ups and downs. But it was not until I faced the biggest challenge of my life, my diagnosis of ALS, that I truly appreciated the value of that old game board rule.

How about you?

When life gave your game board a mighty rotation – such as being told you had ALS — what kind of player were you?

Did you:

  • Stomp away in anger, isolate yourself, and refuse to interact with others?
  • Stay, but whine and complain, while blaming everyone else?
  • Remain stuck in shock and unable to focus or see the big picture?

For me, deep down I knew ALS meant a permanent change, but my emotions argued otherwise. I’ll admit that I spent some time in my own ALS waiting room and had to push back my mental walls. But over time, by giving attention to balancing my well-being and developing a positive attitude, I found a way to accept my illness and return to my seat at the game board of life.

I believe you can, too. Join me, as we continue together to learn how to live well while living with ALS.

Let’s play on!

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

Wes Sexton avatar

Wes Sexton

Well written... keeping a positive outlook is critical for living with ALS. Merry Christmas!

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Dagmar Munn avatar

Dagmar Munn

Many Thanks Wes - - and Merry Christmas to you too!

Barbara avatar

Barbara

I love the “ rotate the board message.” I’m going to do that with my grandchildren so they can start early in life to accept what they cannot change in life. Life is not always fair & I know all PALS are trying or have learned this. We all have it in us to try to make the most out of this dis ease.... There are those days in which I watch another body loss.... I can sit & cry 24/7 but that truly doesn’t serve me well....I have to get out of my head then & rotate my thinking through other coping mechanisms (meditation, distraction of reading, games, support from others ,watching my grandchildren play & being in the present moment plus I hate to say it but TV... I love BBC shows.
Keep up the good work Dagmar....you are a beacon of light.
Namaste
Bountiful

Dagmar Munn avatar

Dagmar Munn

Thank you Barbara!

Irene Fairweather avatar

Irene Fairweather

It has been 1 year and 1/2 since dx with a Motor Neuron Disease. The three Neurologists (one doc at Mayo Clinic) do not know what kind. I've been told that it's not one of the "big ones."

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Dan avatar

Dan

Great article... I was looking for the reaction of... accepting the diagnosis and looking forward to my next move in trying to manage this disease... the article was a great lesson in dealing with changing circumstances

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Dagmar Munn avatar

Dagmar Munn

Thank you Dan :-)

David Buschhorn avatar

David Buschhorn

What a GREAT idea!

So many kids get stuck on the "NO FAIR!!!" mantra and never figure out that them not winning isn't the only "fair" outcome.

This'd be an excellent teaching aid if you played it often enough to work it into their heads that life will throw about half fastballs and half curveballs. :-) The rest are "bean-balls" that go right for your kidneys, whether you're crowding the plate or not :-)

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Susan avatar

Susan

I so enjoy your column Dagmar. I always look forward to your helpful tips, advise and positive outlook and use them to get myself back on track. So grateful for the time you devote to helping all of us Pals.

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Dagmar Munn avatar

Dagmar Munn

Thank you Susan!

Lisa Marie Da Ponte avatar

Lisa Marie Da Ponte

Thank you for your well written message. Funny thing about me, my diagnosis made me cry for those people in my life who I knew wouldn't handle it well. I didn't think about myself at all. I thought about my mother, whom I knew wouldn't handle it well. I knew that my boyfriend at the time would try to help me through it but because of his own life history would not be able to. And I cried because I knew that I would miss those people when they were no longer here with me. Funny how right I was about everyone. I knew that I would deal with it, as I have handled any and everything that has been thrown in my way. I guess what made me the saddest was knowing that I would eventually be mostly on my own. Not anyone's fault, just where I was in life. I was 30 when I first had my possible diagnosis. I had been sick already for three and a half years. I had the doctors scratching their heads! lol I guess when they said possible ALS, I was kinda relieved. Imagine that! I was just so sick of doctors saying that I was crazy. You know, the doctor who said that I needed to see a psychiatrist was the one who eventually diagnosed me with possible ALS! I wanted to say, "Ha! Who needs a psychiatrist now!". I don't think that would have gone over well though. I think that I was kind of relieved to have a diagnosis finally. Truth be told, I think that I knew that it was bad so to finally have a name to the disease was a relief. I think that deep down, I knew that I was dying. You know?
Anyway, thanks for your words. They will help in those moments where I am feeling sorry for myself. Stay strong and laugh daily! xo

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Dagmar Munn avatar

Dagmar Munn

Thank you Lisa. I'm glad to learn that my writings are of help to you. We share a strong spirit and positive attitude :-)

Patricia Riascos avatar

Patricia Riascos

Great message of acceptance, in my opinion one of the most difficult things to do. Last year I was able to wrap all my Christmas presents, but this year I am needing help. It almost feels as if the board is rotated every few months as deterioration progresses and one finds in need of more patience and even more acceptance.
Best wishes for all so that for a few days we pause and "forget" our circumstances to enjoy the company of dear ones.

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Dagmar Munn avatar

Dagmar Munn

Thank you Patricia! And holiday blessings to you and your family. Stay resilient :-)

Mauricio Schaikevich avatar

Mauricio Schaikevich

I would like to know what he does to be good after 8 years

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Dagmar Munn avatar

Dagmar Munn

Mauricio - - you ask "how?" Well, I invite you to read a few of my previous columns (50+ now!) or my ALS and Wellness Blog (https://alsandwellness.blogspot.com/); both will provide you with ideas, motivation and the "how" I go about feeling good, even after 8 years of living with ALS. I hope they will be of help to you. Dagmar

Eileen Coyne avatar

Eileen Coyne

Dagmar - thank you for your perspective - you always lift me, my heart, spirit & mind. You are a blessing in my life - IE

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Dagmar Munn avatar

Dagmar Munn

Thank YOU Eileen!

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