Expanding World, Shrinking World

Expanding World, Shrinking World
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When I was a child, my elderly great-aunt Martha joined my family every Christmas Eve to participate in gift opening. I felt bad that she only got one present while my brothers and I received so many. But she seemed happy with the pair of slippers or homemade ornaments my mom gave her each year.

I didn’t understand the joy she experienced in being a part of our Christmas celebration until years later when I had kids and got to reexperience the world through their eyes. It’s fun to watch young children delight in life, whether it’s a present under the tree, playing in the snow, or finding driftwood at the beach.

The world expands for the early decades of most people’s lives. Kids’ worlds broaden as they grow and go to school, make friends, develop interests, and figure out where they fit in the world.

After graduating from high school, I left my small town and drank in the sights and sounds of the big city of Chicago. I ate Thai food for the first time, and after a bite of a hot pepper, I ended up in the restaurant bathroom with my head under the faucet trying to cool my burning tongue. I took the L, Chicago’s elevated transit system, to Chinatown and stepped into a different world when I got off the train.

After college, I landed in Milwaukee with a new job, made new friends, and met my husband, Todd, a couple years later. We got married and bought a house. We traveled to France and Taiwan. We had two children.

We were on a great adventure. Where would we go next? Would Todd take on an assignment at work that involved a move to a new city? I anticipated what the future would bring.

However, our world came to a screeching halt seven years into our marriage when he was diagnosed with ALS. Our world collapsed onto itself.

Over the course of the next few years, grief drove us to action. We moved closer to family and built an accessible house, and our world began to expand again.

I became Todd’s full-time caregiver and began writing books. Todd developed new computer skills and interests. We’ve made YouTube videos, and we’ve done public speaking.

As Todd’s health declined further, some parts of our world continued to shrink, even long before social distancing mandates. Most people’s homes are not accessible, so we can’t visit. It’s awkward feeding Todd at a restaurant, so we mostly eat at home. It’s difficult to get out of the house.

Now we are being even more cautious with the increased threat to Todd’s health, so we miss out on even more, such as a graduation party for the daughter of dear friends.

It’s hard to miss out on things.

I’ve seen the same thing happen to elderly relatives as their bodies aged, when getting out became tiring, and much of their final years were lived at home.

But just as my great-aunt Martha found joy in watching my brothers and me open presents, I find vicarious joy in watching our kids grow and learn.

Our daughter takes dance lessons. She has rhythm I never developed. With Todd’s coaching, our son has learned to sharpen an ax with a grinder, cut a board with an electric reciprocal saw, and change the oil in his dirt bike. Over the Fourth of July weekend, my son lit off fireworks with my supervision. I’ve only lit sparklers, so I was impressed that he knew what to do, having learned from his uncles in prior years.

It’s an amazing thing to watch my kids’ worlds expand as they grow into themselves and develop competencies beyond me.

In a sense, I feel as though I have aged before my time. I’m thankful for the models I’ve had in others who had gone before me. My great-aunt Martha didn’t have children of her own, so she invested in my family in simple ways, such as cooking a pot roast dinner or taking me out to Subway when I came home from college.

She made rounds visiting friends in the nursing home until she lived in one. She lived on a fixed income, never traveled far, but still led a rich life.

My great-aunt’s life gives me hope that this small world I now inhabit can still be meaningful.

***

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.

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4 comments

  1. Sadie says:

    This post resonates so much for me. I think one of the hardest parts of post diagnosis life has been “missing out.” After my husband was diagnosed with ALS last year, he fell into such a deep depression that he became unwilling to see or be around our family or our friends. We had such a robust social life filled with friends and family outings every weekend, taking the kids on trips every couple of months, or even just enjoying eating out at restaurants. However, this new life had become socially isolating even before the pandemic. As my husband has lost his ability to speak more and more through this past year, he is now more adamant than ever that he cannot be around anyone outside of immediate family. This disease is such a beast, a monster, a thief of everything good a beautiful we ever had. I don’t know how you and your family have persevered for so long— for our family, one year has seemed more like ten.

  2. Terri Phillips says:

    Thank you for sharing your life with us. My world is shrinking in the same way that yours is. My husband is almost completely in a wheelchair and has difficulty with his motor skills. So, his limitations have become my limitations. Although his body is failing him, his mind is not. I see what an impact visits are to those who are not capable of getting out. Even visiting with my husband’s physical therapist, who comes to our home twice a week, has become something we both look forward to. We need to spend time with others to escape the ALS world we’re trapped in. I regret that I did not spend more time visiting with people that were unable to get out of their house because of some kind of limitation, when I was able to do so. It makes a difference.

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