The other day I received an email from a good friend. Following several paragraphs of news about family and mutual friends, the email concluded along the lines of, “…we are so proud of you and your courage in your battle fighting ALS.”
Whenever I come across passages such as that one, I pause and carefully consider the words. Don’t get me wrong, I totally appreciate the heart-felt sentiment and concern as well as the challenge of finding just the right thing to say when writing to someone who has a “fatal” illness. Naturally, we fall back on familiar words and phrases. Words commonly used in reference to illness and disease. Words and phrases like:
The war on heart disease…or, having Courage against cancer…or, Fighting the common cold...or even the bewildering phrase, The battle against the heartbreak of---psoriasis!
But, words do matter, and perceptions matter as well.
Truth is I’m not in a battle with anything; I’m not fighting an enemy or waging war against a tide of invaders. I don’t wake up every morning thinking, “OK feet, put up your dukes! ‘Cuz, if you don’t start walking right, we’re gonna’ have a real battle this time!”
I know my feet and legs aren't at fault and more importantly, I’m not at fault. This condition of ALS is happening on a deeper, cellular level; it’s a part of me. Best summed up in the iconic comic strip of the 1970s, when Pogo said, “Yup, Son. We have met the enemy, and he is us.”
Instead, I wake up every morning thinking about how I can bring more well-being into my day. I use the words: compassion, kindness, calm and healing. Perceptions matter.
But, when certain words are used by fundraisers - - to have us join a cause, make a donation or write our Congressman, then the rallying cries of war, fight and win become successful; attracting attention and generating contributions.
When the same words are repeated over and over they can even create an explosion of participation. Such as the recent Ice Bucket Challenge which helped to generate over $100 million for ALS research. Did you know that according to the ALS Association, prior to the summer of 2014, only 50% of Americans were even aware of ALS/Lou Gehrig’s Disease? Certainly the chant, “Heal, Heal, Heal!” would not have been quite as successful!
So, now that the general population is finally aware of ALS, it’s up to us PALS (People with ALS) to take advantage of the learning opportunity and help shape the perception of ALS. Because frankly, most folks are still not sure exactly “who” that person is with ALS; “What do we say to them? How should we treat them? What kind of help do they need?”
It’s only human nature to try to make comparisons, and sometimes they get it wrong. So, is it like…? Having a stroke? No. Parkinson’s? No. Alzheimer's? No. Your speech is slow, do I need to speak slowly back to you? No. And on, and on.
Of course there is a perception problem; there simply is no typical ALS patient. And, there still is no known cause or cure. But the experts have gathered boatloads of statistics. They can identify the average age of onset, the average symptoms, the average costs and the average lifespan.
What we read shapes our beliefs as well as has a profound effect on our attitude, expectations and mind-body synergy. Words matter.
You, me…and all PALS are not "a statistic." ALS is experienced by young people as well as elderly. It affects both men and women. Fit and unfit people. It’s an inherited gene as well as appearing spontaneously in those with no family history of the disease. Each PALS’ experience is unique. Our perception of ourselves is what matters.
You are a person LIVING with ALS.
You are YOU.
…and those I believe are THE most important words!