How a changed perspective and a little humor help me with ALS
I often get a boost by finding the positive sides of life with my symptoms
One of my duties as a moderator for the ALS News Today Forums is to encourage new members to discuss their worries about living with the disease. I often find myself repeating the same advice over and over: that they be open to changing their perspective, that they alone are responsible for their attitude, and that they shouldn’t discount how humor can help perspective and attitude.
Many members are newly diagnosed ALS patients who are stuck imagining end-of-the-world, worst-case scenarios of their disease. Envisioning total paralysis, inability to speak, and dependence on a feeding tube for nourishment, they ask, “What if that happens to me?”
I’ll admit that after receiving my diagnosis of ALS in 2010, my thoughts were the same. But I also knew that those scenarios had not yet happened to me. And maybe, if I followed my doctor’s recommendations and took care of myself and my attitude, I could extend the time of my symptom progression.
I also found inspiration from the memoir “Man’s Search for Meaning,” by the neurologist, psychiatrist, and Holocaust survivor Victor Frankl, and especially one particular quote from him: “Humour more than anything else in the human make-up, can afford aloofness and an ability to rise above any situation, even if only for a few seconds.”
Humor is something I rely on to help me live with ALS. A fun, change-of-perspective example is when I challenged myself to find something, anything, positive about my ALS symptoms.
My current symptoms include weak legs and feet, as well as speaking and swallowing difficulties. Here is the tongue-in-cheek result of that thought experiment.
A positive view
Because most of my exercise routines are done on the floor, I can relive my childhood! Crawling, rolling, and other simple movements are far from the complicated aerobics I used to do. But while I’m on the floor, I let myself enjoy being a kid again. A side benefit is that I can also locate items lost under our living room chairs.
Having slow speech has probably saved me from interrupting heated discussions with an impulsive remark or snappy reply. In my mind, I’m thinking of a billion possible quips. Instead, I’m left listening, choosing my words carefully, and responding when it’s my turn to speak. Not as fun, but certainly civilized and much safer.
My swallowing issues remind me to follow my mother’s warnings and advice. “Take small bites, eat slowly, and never talk with your mouth full,” she’d always say. It’s funny that all my past years of speed-eating in college have been successfully corrected by ALS.
Life comes with change
That’s the thing about life with ALS: Change can happen at any time, and then again, not happen for a long while. And it doesn’t matter if we are holding our breath bracing for the next worst thing; as long as our mind is at a standstill, we are not living.
Remember, many factors influence our quality of life with ALS. But only one factor exists that you, the patient, can have a direct influence over. That’s your attitude. And let a good part of that attitude include humor. It’s one more way we can to learn to live well with ALS.
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.