On August 28, I wrote a blog post called “God Works in Mysterious Ways” in which I discussed how building a deck on my house was positively affecting my mental and physical health. At the time of the blog post, I had been working on the deck for a month, roughly the same time that I had been in physical therapy for Parkinson’s Disease. Although I was aching every day, the physical therapists were measuring my strength and balance while noting greater than normal improvements, which we all agreed was the result of the extra exercise that resulted from the building of the deck. My neurologist was all in, suggesting that I hire myself out to neighbors for deck building projects. I declared that even chronic degenerative diseases could be turned back, if only the person was motivated to work hard to overcome it.
My enthusiasm was soaring as I transitioned from the summer to the Fall. That was about the time that things started to change. I went from Summer break to the Fall semester, teaching two freshman scripture classes, running the sixth grade CCD program at St. Agnes Parish, and teaching a 90 minute course based on Why All People Suffer for 53 students in the Avila Institute’s School of Spiritual Formation. Finally, I wanted to write blog and magazine articles to support the book, since my publisher’s marketing moved to new releases. Physical Therapy ended about this time, as did framing the deck, which is the creative aspect of it. What was left was pulling off the old, rotting deck boards, which required strength, and to put on the decking material, which required handing 12 and 16 foot long composite decking boards, which was generally too heavy for me, and screwing in 3800 screws at foot level, which killed my back.
Although I dearly loved these activities, in combination they were too much for my current capability, but I have never been the type of person who backs away from a challenge. So it was hard for me to disengage from doing things that had previously caused me pleasure. I asked my Parkinson’s specialist about the signs I should look for in deciding when I could no longer carry out specific activities like teaching or building decks and he said, “I don’t want you to stop any of it because once you stop doing these things, you will degrade rapidly.” This caused me to pause and contemplate my situation and that of my 90-year-old mother.
My mother has been a widow for ten years. During that time, my younger brother Richard has been her guardian angel, living with her and caring for her needs at the expense of carrying on his own life. When I moved to Washington in 2015, Rich and I merged our funds to buy a house in Arlington, Virginia and had a bedroom suite built for our mother on the first floor. For two years, Rich, my wife Sue and I shared the load of caring for my mother. At that time, my mom could walk with a walker and, although the doctors told us she had dementia, she had her full communication skills. She was a bowler in the years after the children left the house and we introduced her to Wii bowling, which she loved to play. I enjoyed it too, so we played every night after dinner. Occasionally, someone else would join us.
I had a rule with my mom that if we were going to play the game, we each had to stand when it was our turn because it gave us at least some exercise. The in-home physical therapist that Medicaid provided, but my mom rebuffed, had a simple statement that she used to try to motivate my mom with, which we also adopted: “Use it or lose it.” This went on for the better part of a year when abruptly my mom informed me she was going to play Wii bowling sitting down because standing was becoming too much of a burden. For a few days, I refused to play with her sitting down, but eventually relented and we went back to playing, but she never stood again. In fact, as much as we serenaded her with “use it or lose it”, she had made up her mind that the physical suffering from standing was just too much to endure and her legs became constricted at 90-degree angles so she couldn’t stand if she wanted to.
She had lost it, but the ramifications were bigger than not standing for her turn at bowling. She also made it impossible for us to care for her in our home safely because she was too heavy for one person to lift and if she fell, we worried that she would do serious damage to herself. This happened when my sister tried to take her to a local diner as a special treat, but my mom fell while getting out of the car and into her wheelchair. My sister could not help her up and had to rely on the kindness of a stranger to get my mom back in the car to return home. This confirmed my fear that we lacked the capability to care for her safely in our home and I quickly got consensus from all 6 of us siblings to explore nursing and elder care facilities. Rich and I visited several in the area and decided that we would let our mom choose which one she wanted to move to.
As the eldest sibling, I was tasked with breaking the news to our mom. It was the hardest discussion of my life. She kept asking plaintively why things had to change, to which I answered each time that they had already changed and that we were acting for her well-being and safety. I think back to that discussion now, four years later, recognizing that I am now in my mom’s role of diminished capability and that eventually, I will probably have someone make the decision for me. Then, I think back to how hard it was for that person (me) to make that call for a loved one. Sue, my wife, says she would not burden someone else with the decision but would volunteer to go to an elder care facility rather than be a burden on our children.
This got me thinking about how one judges the right time to abandon doing the things we love and to move ourselves to the end stage. I’m still trying to sort out how to weigh the various factors out for myself, but if there is one thing working on the deck, this summer told me is that is not something I could do again. The pain and stiffness was too overwhelming to endure again and, though I thoroughly enjoyed building the deck and was thrilled when the inspector told me, “This looks amazing. You did a great job,” I know that my body is no longer capable of this intensity of work.
Like my mother, I have concluded that I had to heed my suffering and stop doing an activity I love because I could no longer take the associated suffering. Now I realize that people who have not reached this stage cannot appreciate just how much it must hurt to willingly give up a beloved activity. I must admit to myself that I misunderstood my mother to be weak when she was actually heeding her suffering and moving on to something else. I am not sure what that was in her case, but I have faith it was somehow part of God’s plan and that it leads to some spiritual growth for someone, maybe me. It is certainly a cautionary tale that we can all learn from.
I must admit that when I started writing, I was thinking that the lesson learned from the deck work was that when the suffering becomes unbearable, it is signalling that it is time to stop whatever is causing the suffering. A few more visits with my mom in the assisted living center dissuaded me from stopping anything without carefully considering the unintended consequences of the decision. While it is doubtful that I will build another deck, I realize I need to replace the movements involved with another form of exercise or I, too, will lose the ability to stand and all that goes with it. I now understand that suffering and pain will moderate my activity, but the more I push back against it, the longer I will be able to contribute to society and maintain my independence. Also, I understand I don’t have enough motivation to push through the pain based on this realization alone, because exercising in pain is drudgery. I need a way to make it fun or at least productive, like building the deck, to keep me motivated to exercise.
Please say a prayer for my mother, Dolly Chaloux, whose suffering has led to many of the insights I have shared in my book, articles and blog posts. May she recognize the good that comes from her suffering and let it turn to joy. Also, if you have any insights that might help motivate me to exercise sufficiently to not lose functionality, please send them my way through my website and I will pass on anything that works to others that find themselves in similar predicaments (and if you live beyond middle age, you will face this problem as you age).
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Editor’s note: You can listen to our podcast interview with Dr. Chaloux in our episodes “A Catholic Answer to Suffering” and “When Bad Things Happen to Good People: A Catholic Answer.” You can also pick up his book, Why All People Suffer: How a Loving God Uses Suffering to Perfect Us, through Sophia Institute Press or your local bookstore.