Shifting My Mindset to Play the Game of Life

Kristin Neva avatar

by Kristin Neva |

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Last week, I went to the doctor to get a problem with my ear checked out.

The medical assistant went through a list of screening questions. The last was, “Are you depressed?”

Tears welled up in my eyes. “Yeah, I’m depressed. My husband is terminally ill.”

“I’m sorry,” she said. She noted my response on the computer and then left the room.

I had dried my tears by the time the doctor came in a few minutes later. He first took a look at my ear and prescribed some medication, and then we discussed my depression.

He’s aware that my husband has ALS because he is also Todd’s doctor. He was empathetic as I briefly described the long-term sadness I’ve experienced through Todd’s decade of decline. Life is hard.

“Do you want me to prescribe an antidepressant?” He ran through the list of medications and explained how each worked.

“I’m not sure,” I said. I had tried one of the antidepressants a few years ago, and I explained how it made me feel. I couldn’t sleep. I couldn’t cry, which I find therapeutic. I couldn’t feel. I was glad to get it out of my system and get back to my feeling self and the joy I still find even though I can’t escape the sadness.

The doctor nodded.

I thought for a moment. “I find meaning in my writing and the responses I get from people who say it resonates with them. If I take something, I might lose my edge.”

He smiled. “Art comes out of suffering,” he said. “Let me know if you want me to prescribe one.”

I know that some caregivers have success with antidepressants, but the one I tried was not a good match for me and made me gun-shy to try another. Instead, I’ve coped through exercise, writing, creative endeavors, and watching shows that make me laugh. Also, getting nighttime help for Todd makes a huge difference for my mental health because I’ve been getting sleep, although I still experience a lot of sadness.

A few years ago, when Todd saw that same physician for the first time, the doctor asked him if he was depressed. When Todd said he wasn’t, he seemed surprised. Todd is paralyzed and can’t even cough without assistance, but he’s not depressed. He finds purpose in his life — volunteering for our church with miscellaneous projects he can do on the computer, keeping up with national and global events, reading books, investing in our kids’ lives, and spending time with me.

I sometimes wonder why it seems like I have a harder time emotionally with this monster disease than Todd, who actually has the disease. Shouldn’t it be the other way around?

Perhaps some of it has to do with temperament. When our daughter was a baby, years before Todd had ALS, I was the mom who worried about BPA in bottles and lead paint dust in our 1925 bungalow. I freaked out when our toddler licked the painted railing on our front porch. Todd was more chill. He said she’d be fine, and she was.

I also had different expectations than Todd about how life is supposed to work. As a young, idealistic woman, I thought we had more control over things than we do, or that God did, anyway. I believed that problems could be mastered or overcome, or at least we could always find peace and joy in suffering. The course our life has taken has disappointed me on many levels.

My husband didn’t have those same expectations.

Last weekend, I was playing the board game Life with my son. It’s kind of fun, you can decide if you want to take the path where you might get to have kids. You might get to pick a house if you spin the right number. If you take a slightly longer route you can go to college and get a career that pays more. But overall, the outcome is pretty random.

I like playing the game because my son enjoys it, but I usually prefer games with more strategy. I like having agency. If you try to play Life with some strategy in mind, you’ll probably be frustrated by the game. It’s better to just spin and see what happens, make whatever choices you can, and enjoy the game.

I’m trying to do the same in real life, too. I can use the problem-solving side of my personality to advocate and secure resources and equipment, but beyond that there is little agency in life with ALS. I am trying to shift my mindset to become more comfortable taking each day as it comes.

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Comments

Lilian avatar

Lilian

Thanks Kristin, for sharing. Your articles are truly helpful

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Nona avatar

Nona

Kristin, thank you so much for your words. I know our ages and losses are different but your words express what I feel so often. Somehow it helps me to know that someone else is processing this journey in a similar way.

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Cate avatar

Cate

When I was burned out at my job many years ago, I consulted a career counselor. She said, “No wonder: you have a lot of responsibility and no control.” I can relate to your feelings, but also, I think in many ways people with the illness (like me) can handle it better than our caregivers. Even with a disease like ALS, somehow you feel like you have more control, whereas the caregiver has a lot to do—but they often don’t feel like they are able to help their loved one as they would like. They can’t ‘fix it.’ ❤️ To you and thanks for sharing.

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Kristin Neva avatar

Kristin Neva

Your career counselor's statement resonates with me---thanks for sharing!

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Claire avatar

Claire

Deeply grateful for your writing.

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Mary Connolly avatar

Mary Connolly

Thanks Kristin. Very insightful and helpful.

Reply
Julie avatar

Julie

My husband who has just turned 80 in January, is in the last stage of MND.
It is shocking to read that there are so many young people with this disease.
He is the third person in our family to suffer and suffer he does. As a full time caregiver
I find every day excruciating, he cannot swallow solid food and he chokes on liquids.
He is now in rapid decline, weighing 51 KG.
I feel for all the caregivers who are in my position. Nobody can know what it's like!

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