ALS In Wonderland Artwork by Clint Anderson

”I'm late, I'm late, for a very important date! No time to say "Hello, Good Bye" I'm late, I'm late, I'm late!”

~The White Rabbit

The proverbial trip down the rabbit hole begins the instant one hears, “you have ALS.” All of a sudden life feels like a bad trip. Everything ALS is flying at you, merging with your fears, leading down endless labyrinths of questions. Your life flashing before your eyes in full technicolor. Why? You’ve just been told you are dying.

So, are you the rabbit, running out of time, unable to say hello or goodbye. Feeling like you have to pack your remaining time, or you’ll be late to your own funeral.

Are you the Queen of Hearts, angry at the world. Ruling your subjects, aka caregivers, without empathy, sympathy, or care for your taxing nature. Biting everyone’s heads off, as they tend to your every need to the point of exhaustion.

Perhaps you are Alice? Wondering what is real, what isn’t, what is important, or not. As you push forward through this new psychologically twisted landscape, you ask yourself -- have I lost my mind?

This experience introduces you to strange characters at each turn. A cast of persona's you never expected to perform alongside in this new production of your life. You encounter the tea party ( ALS Clinic) with the Mad Hatter running the show (neurologist). It takes a moment to decipher the Mad Hatters gibberish –

…You used to be much more…”muchier.” You’ve lost your muchness.

~The Mad Hatter

This is, in fact, a portent of what is to come. You know, but you don’t really know.

At the onset of this journey, through ALS Land, you are tiny before the door in your minds eye. “I’m too small to reach for hope.” You soon realize the potion on the table will help you grow to open hope. It’s not until you finish the potion that it tastes familiar.

It reminds you of love, acceptance, warmth and strength. This knowledge, not the potion, helps you understand that hope has been within reach the whole time. No potion or magic to unlock it needed.

All you need is to embrace the love being offered in your time of need. Your inner strength mixed with a pinch of care, surrender and a dash of acceptance, this is the recipe for hope. It doesn’t sit in a bottle, on a table in your mind. It is, in fact, already in you, always has been; waiting for you to grow your heart in order to reach it.

Yes, living with ALS is like being a character in Wonderland. Within this wonderfully weird world filled with enigmas, you decide the path and how to engage with your proverbial rabbit hole.

“The secret, Alice, Is to surround yourself with people who make your heart smile.”

~Lewis Carroll

TJO