Hope for a Cure
Another Labor Day has come and gone and with it, for me, vague feelings of nostalgia, anxious excitement, dread, and a kind of contempt for hopeful people. I was literally a poster child for neuromuscular disease. Here’s the proof on a national poster:
And as Poster Child for my local chapter of the Muscular Dystrophy Association, in 1980 and 1982, I traveled the state of New Hampshire, smiling so long and so often that cheek-ache became a familiar sensation of childhood. The climax of my duties was to appear on our local cutaways of the Jerry Lewis Labor Day Telethon. Little, blonde, smiling and dimpled girl that I was, sitting in my wheelchair, I would look into the camera, speak into the microphone, and tell people to help fight MD.
It was at the MDA events and, especially, the Telethon, that I was surrounded by the hopeful people.
People used to tell me, with smiles, sweet voices, and encouragement, that I should keep hoping that a cure would be found for my disease and that I would be able to walk someday. But, I don’t remember having this as a real hope… maybe more like a fantastic wish. My mother tells me, however, that I once expressed belief that becoming Poster Child for MDA would mean that I would be able to walk. We can imagine, then, the disappointment that I must have felt at 5 years old when I became Poster Child and remained crippled – my hope so utterly unfulfilled.
An Amused Cynic
Despite having my hopes dashed, I want to make it clear that I was not a bitter child. I was generally and genuinely happy, finding joy in little things and easy to smile. I don’t even remember getting my hopes dashed. Whenever people mentioned that word “hope”, however, I remember within me an inner smirk of cynicism. Those people who were fighting so relentlessly for a cure, rallying me and believing that I would be able to walk one day – those people were sadly and foolishly falling for wishful thinking. And I never wanted to be a fool like that.
Entering my teen years and throughout those years, I developed a vague, unvoiced dislike for these hopeful people, overly enthusiastic, sappily patronizing people, so full of wishes and happy thoughts that any fairy would swear that they could fly.
Hope became a four-letter word to me. And somewhat amusing.
Hope of Heaven
There was another kind of hope that was introduced to me at an early age, because of my upbringing in the Catholic Church. The Christian understanding is that one’s ultimate and truest happiness will be found in Heaven. The sufferings we endure in this life will bring us great reward in the next. So, I remember, as a child, being taught and believing that I would walk in Heaven. My mother also tells me of my reaction on first hearing this from my older sister, when she came home excitedly one day from religious education. I was about 3 years old. On hearing from my sister that I would be able to walk after I died and went to Heaven, I exclaimed joyfully that I wanted to die. Hearing these words from her little daughter, my mother understandably tried to talk me out of my desire by informing me that she, my father, and my sister would not be with me in Heaven after I died. Loving my family so very much and only feeling comfortable and safe when I was with them, I stopped desiring Heaven.
That explains a lot, too.
Imagine There’s No Heaven
It is important to note that I have never truly wanted to die, for I have a natural and deep love for life, here and now. My general disposition is as a glass half-full kind of person. And I love what is real, because it is real. Not wanting to be a fool and not wanting to be cajoled, it isn’t much wonder that I became vehemently against the “comforting” hope of the afterlife.
“Poor thing,” people might say to me, “at least you know that you will have a wonderful life in Heaven where all your dreams will come true.” The hope of Heaven became something of a consolation prize for the losing hand that I was dealt or a kind of life-raft to which I was supposed to cling. But, I would have none of that. First of all, I knew that I, myself, was not a loser. Second of all, I didn’t want to cling to anything to help me “get through” life, as if I couldn’t hack it on my own. So opposed was I to this offered hope that it was one of the reasons that I became an atheist for a short while, around the age of 20. I wanted to prove that a didn’t need the vague hope of Heaven, that I didn’t need God to be happy. As John Lennon once sang, “Imagine there’s no Heaven – it’s easy if you try.”
I have always loved the truth and will pursue it, no matter what. It isn’t that I hoped to find the truth, but, rather, that I was determined to uncover it. As an atheist, I really thought that I had revealed all the myths and fairytales and wishful thinking for the errors that they were, that I knew the truth.
But, the final discovery that I made was an unexpected and unwanted one: that which we call God is true. More on that story in another post. I have, thankfully, been cured of the spiritual deafness and blindness of atheism, although it was a long journey into Christianity. Now, as a believing Christian, devoted member of the Catholic Church, I still struggle with the belief that everything will be made “right” with eternal rewards in Heaven. By struggle, I mean that I don’t want to be coaxed into accepting suffering or into being good with the promise of some future treat, like a child. One thing I despise is to be patronized.
But, if Hope is a theological virtue, then it can’t be a “four-letter word”. What do I do then, as a believer in Christ Jesus, with this thing called hope?
To be continued next week…
© 2015 Christina Chase
Although crippled by disease, I am fully alive in love. I write about the profound wonder and terrible beauty of life while living with physical disability and severe dependency. Unafraid to ask life's big questions, I was briefly an atheist and considered other religions before finding, in God's choice to intimately share our humanity, what it truly means to be fully human. A revert to the Catholic Faith, I blog weekly and have written a book called It's Good to Be Here.