What Happens When We Compare Our Lives With ALS
When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with us, although his health is severely compromised due to ALS.
I hesitated in writing this, because I know too many families who have lost a parent before the kids were 12 and 15. My gratitude that Todd made it to see our kids this far could evoke in others a sad wistfulness for what might have been.
On some level, we all relate, because an ALS diagnosis is life-shattering, but there are subsets within the ALS community. People are diagnosed at different ages and life stages, and there is so much variety of disease progression. Some experience a quick, painful sprint toward the end. Others, like Todd, endure a grueling marathon with gradual loss followed by years of paralysis.
People experience unique pathways of the disease and may lose the ability to speak or walk, or they experience other effects such as depression, emotional liability, or frontal lobe dementia. Each family has unique challenges stemming from what abilities are lost, or not, and the sequence of when they go.
People’s support systems vary. Some have friends and family who can help, while others have the support of the U.S. Department of Veterans Affairs (VA). Some have wealth and savings or a spouse with a good job, but even then they may be unable to find help due to a lack of nurses or aides.
I’m not shocked that I feel some envy when I see other families living normal lives by going to the beach, on a hike, or a vacation. But even as I interact with others in the ALS community, I’m surprised by how often I compare our circumstances.
If only Todd could still turn himself in bed or sleep independently.
If only our kids were older.
If only we had the support of the VA.
Comparisons can sometimes be beneficial. They can help us imagine a better way, such as knowing what to fight for with our Medicare system after comparing our healthcare to others who live in countries that provide more support to people with ALS.
I can gain perspective when I come across situations that seem worse than what Todd and I are experiencing. I read accounts on social media of people in other countries that provide even less support to those with ALS. I hear stories of spouses with the disease who disengage or get mean. I get to know people who were diagnosed really young, before they had time to find partners and build families. I am saddened as I hear their grief for what will never be.
On the other hand, comparisons can dampen my empathy when I think another person’s situation isn’t as bad as ours. While that may be objectively true or at least true from my vantage point, it can discount another’s pain.
Our kids were just 9 months and 4 years old when Todd was diagnosed. I wish this disease hadn’t consumed their entire childhood, and that their “normal” wasn’t growing up with a dad with ALS. But I can imagine what a shock it would be to teenagers in the throes of hormones and identity formation when a parent is diagnosed. That’s a different kind of hard.
And older people, who have banked memories of young love and middle age together, are devastated that their golden years will not be what they envisioned. They are lonely because their kids live far away and can’t or don’t visit, and they are burdened because they’re physically incapable of providing the necessary caregiving.
We all suffer in different ways.
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