Finding My Way Through the Doorway Marked ‘Humility’
ALS patients endure a litany of personal incursions; here's how to see victory
“Find the victory in this.”
For nearly three decades, I’ve carried these five provocative words in my mind. Like my life, their meaning to me has evolved over time.
I first heard them spoken at the funeral of a young woman, and the comment was directed to her 15-year-old son, who was left to mourn the loss of his mother, who was killed by his father. I sat there wondering if my 15-year-old self would’ve accepted those words. Of course, the speaker knew the young man was filled with anger and resentment, which made it doubly hard to find the right words to say.
I don’t think I would’ve been very receptive at that age. But now I’m older and, hopefully, wiser.
Through the years, I’ve experienced many times when I had to recall those words, especially now that I have ALS. They’re so much more meaningful and important to me these days. I know that no matter how good we think we are or how well we take care of ourselves, bad things can happen to us. Because we’re not in total control, searching for the victory in the midst of a crisis should be our goal. I believe victory is possible, but it’s difficult to see sometimes.
The good news is that although we don’t control everything in our lives, we can choose how we respond to things. Maggie Walker, the first Black woman to own a bank in the U.S., once said, “You can stand up and be counted or lie down and be counted out.” I choose the former over the latter; thus, I look for the victory in my crisis.
Keep in mind, though, that victory may not always be for the one who’s suffering. Good things sometimes happen to family members, friends, or even enemies.
The challenge before us
Despite finding many victories in my trial, there have been times when I’ve actually prayed for God to take my life. Then I remember my own words: Just because we’re helpless doesn’t mean we’re useless. I believe my usefulness is on display in this column. Besides, if I die, my daughter would kill me!
For those of us featured in BioNews, the parent company of this website, as well as many others afflicted with various diseases, the road is rough, and finding the victory in our dilemma is an everyday challenge. I know it’s cliche, but we really are taking life one day at a time — and some of us are taking it one hour at a time.
As the days and hours pass, ALS patients endure a regimen of uncomfortable incursions — both physical and mental — that cause anguish, despair, aggravation, embarrassment, and pain. In my case, the vulnerability and lack of control are the worst. Lying helpless while someone does everything I used to do for myself instills fear that no one should have to experience.
Other incursions include being rolled over in bed with my arms flailing, having my shoulder joints nearly separated by improper lifting, getting my fingernails and toenails cut too closely, having skin abrasions from Hoyer lift straps being pulled from beneath my legs, and probably the worst thing imaginable, being scalded by hot water in the shower. I once read a story about an ALS patient who suffered severe burns while having his feet soaked in hot water because he could only blink his eyes and couldn’t get the caregiver’s attention.
As the saying goes, “Imagine the possibilities.” Now, tell me where the victory is in being jostled and jerked, tugged and trapped, probed and poked, pricked and prodded, palpated and placated, and pushed and pulled, all while I am laid bare for everyone to see? I think, “Please let it stop!” Even worse is the fact that tomorrow will bring much of the same.
I ask myself, “Where do I go to get my dignity back?” Someone answers, “Through the doorway marked ‘Humility.'” Each day, after everything stops, I look forward to the relief of a good night’s sleep.
My daily life reminds me of something else I heard back in the day. A little boy would intermittently hit his head with a hammer, when one day someone asked him why he did that.
“Doesn’t that hurt?” he was asked.
The boy replied, “Yes, it does, but it feels so good when I stop.”
While I do want the negative encroachments on my body to stop, the victory is in their being done and the blessing is having someone do all of those unpleasant things that attend to my condition. I choose not to complain, because I’ve found so many victories during my illness, and they far outweigh the ravages of ALS. Although it’s exceedingly hard, I must continue to move forward, using the balance of my time to be a positive example.
Therefore, I’ll make every effort to follow the sage advice to that 15-year-old who lost his mother. Although it may be far away, and though it may be well hidden, I’ll find the victory in this.
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.