Finding balance in life with ALS during an unusually full weekend
A busy few days point up our normal need for routine and relative quiet
We had a whirlwind of activity this past Memorial Day weekend, with friends visiting from out of town. We had blue skies, sunshine, and warmer temperatures than usual. After a long winter and the slow unfolding of spring here in Michigan’s Keweenaw Peninsula, it felt like a gift.
Although my husband, Todd, had to stay home because of his ALS progression, the rest of the crew — our two kids and I, along with our friends and their three children — took full advantage of the weather and made it up to the top of Mont Ripley and out to McLain State Park. And we all, including Todd, caught up over meals at our kitchen table.
It’s always a joy to spend time with our friends and see how their children grow from year to year. I often feel isolated in our life with ALS, so having company was a nice change of pace. But after the busy weekend, I’m also reminded that Todd and I can’t keep up with so much activity on a regular basis.
Todd’s morning routine takes us until noon, and he tires by late afternoon if he gets too much stimulation. We tried to strike a balance. Todd enjoyed the camaraderie in measured doses, and then I set him up at his computer while the rest of us headed out.
Action and reflection
Mont Ripley still held snow in patches in the woods and even an area in the sun where a ski jump had been built. Our friends’ daughter and I built tiny snowmen. The view from the top of the hill was stunning. Water shimmered on Portage Lake and a nearby canal, and although we had clear skies behind us over the peninsula, clouds settled over the valley and stretched out to the Huron Mountains to the east on the far side of Keweenaw Bay.
On the west side of the peninsula at McLain State Park, we walked the shore of the big lake and picked pretty rocks. I found one that I think might be an agate. Lake Superior has a way of quieting the stress of life.
After our company left on Sunday evening, I reflected on how full the weekend had been. It was not unlike a typical weekend a decade and a half ago, when Todd was healthy and we had two small children. We went for bike rides and out to parks, took day trips to Milwaukee and Chicago, and invited others to spend time with us at our house. I miss the days when Todd and I could take on hosting and household chores together.
But I’ve come to realize that now, after caring for Todd and keeping the household running, I just don’t have the bandwidth I used to have. I only have an hour or two each day to do something just for myself or to seek out time with other people.
Even though I often bemoan my isolated state and crave more connection, I’m learning to be more content with a quieter life.
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, and are intended to spark discussion about issues pertaining to ALS.
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