Illusion

By Chantal Lanthier, living with ALS since 2013

Illusion

“You’re only as old as you feel!”

We’ve all heard that expression, right? Obviously, the older you get, the more your body starts to fail you. Yet, many of the older people I know tell me they feel “young inside” and still have the urge to take on new challenges or explore distant lands if only their old bodies could keep up!

That’s where the comparison with ALS patients comes in. As Nathalie Larivière, herself an ALS sufferer who is completely paralyzed, wrote so eloquently: “Whenever I see a photo of myself or catch a glimpse of myself in the mirror, I’m taken aback at how my outsides don’t match my insides. Deep down, I feel so alive. I’m still capable of being happy even though my body is going haywire and seems to be giving up the ghost. Deep inside me, sadness and happiness co-exist peacefully. Happiness comes easily to me. It washes over me because I’m open to accepting it. I’ve redefined what it takes to make me happy. I welcome happiness into my life at all times. So, I want to say that it’s difficult, but still possible, to feel good and happy despite the disease.”

How we look is no guarantee of our happiness and inner peace. It’s important to look past appearances before concluding that someone has no inner light. We’re so much more than our bodies! Never judge a book by its cover, and don’t be too quick to judge the people you meet. But, of course, you already knew that!

When ALS strikes, the rules of the game change completely. I clearly remember the dark thoughts I had after my diagnosis: “How will I ever survive my body giving out on me? There’s no way I’ll ever let someone else wipe my butt, no way I’ll put up with being totally helpless. That’s not a life!” That’s probably what 99% of healthy people would say. Yet, here I am in a wheelchair, I’ve lost my voice, my fingers don’t work so well anymore, I need to have my butt wiped, and I’m still happy! My mind is at ease, I feel happy and at peace. The spirit adapts and redefines itself. The soul develops a craving for other things. Life takes on new meaning.

This transformation happens very slowly. As your body fades, a light begins to glow within. A mere flicker at first, this light, this force eventually fills up all the dark corners and shines on everyone around you. As Leonard Cohen said: “There is a crack in everything, that’s how the light gets in.” There are many definitions of happiness.

But something else is needed to let the light in and the magic take over, and that’s love! Pure love and lots of it. The love of your family and friends, who watch over you, making sure the light never goes out, that you keep shining from within. Jocelyn often says: “I’m strong because she’s strong,” and I reply, “I’m strong because you’re strong.” And the same goes for my daughter, my family and my friends.

Roxanne Goulet