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When Your Illness Makes You Realize That 'Something Has Got to Give'

I’ve said it a million times lately, to myself, to my husband or to no one in particular. Sometimes I yell it up into the clouds like a scene in a movie where the camera pans straight up above the heroine, she throws her head back and screams, “Something has got to give!” and it echoes across the sky. And yet, it seems the last couple years have been all about giving a little here, a little there, but never enough to make a difference. Our lives over the last 12 months have been nothing but changes, both big and small. But here am I again, screaming my plea to the heavens, “Something has gotta give!”

I thought last year when I gave up my job that things would soon settle down into a gentle routine. My mother had moved in with a friend several hours north and my oldest child finally had a job and a home of his own. I only had my husband and my daughter left to tend. When she came to us a week later and announced she was moving out years ahead of schedule, I convinced myself it was a good thing, her chance to establish independence and my chance to concentrate on myself. I thought my husband and I would bond in ways we never had before with all this quiet time to ourselves. Instead, I found his life went on, with work, with chores at home, with his own hobbies, while mine stood still. For the first time in my life, I was truly alone for hours and hours, day after day. I waited for heavens to open and all these wonderful retired person things to rain down upon me until I looked like a beauteous AARP advertisement.

It never happened. The thing you don’t realize when you retire young, due to an illness, is that those hours you dreamed of as a young mother or a busy cubicle worker go by so painfully slowly when no one is dangling a carrot above your head. Watching all the TV you’ve missed, reading the pile of novels you had waiting, crocheting that long-planned blanket and volunteering at your local soup kitchen are hard work, but no one is making you do it or holds you accountable when you lay in bed all day instead. Worse even, is when your mind is willing to find work but your body declares a sick day or week, and there is no one there to say, “Poor you, can I make you a bowl of soup or hold your hand while you puke?”

When the days and months passed and nothing felt calmer, and no spectacular routine had established itself, I began to wonder what else I had left to give up to find a sense of normalcy again. I tried off and on with my failing health to volunteer, at various crafting past times, watching entire runs of TV shows I’d missed out on. I tried gardening, making new friends and the senior water aerobics class – even though I was 35 years younger than anyone else there. And yet nothing stuck. Nothing made me zippity-doo-dah happy like the old folks on “Hee-Haw.” Soon I began to fear that the something that had to give was so much bigger than I had ever imagined.

Last week, I turned to my husband and said the key phrase again,“something’s gotta give.” He frowned, not knowing which argument I was about to resurrect and hit him with. We’ve had a year of real doozies.

A picture of trees in the fall.

“The truth is,” I said, “that my disease is here to stay and we cannot keep going on like this, just waiting for things to go back to normal. Things can’t go back to normal. I can’t be your normal version of myself anymore.”

“So, are you saying you’re giving up? Giving up on us? Giving up on getting better?” he asked, not understanding this huge realization I was trying explain to him.

“No! Dammit, this isn’t me giving up. This is me saying we cannot go on like this. I, for sure, cannot go on like this. This is me saying that things are going to have to change, and change big.”

As the words flowed out of me as hot and angry as my tears, I began to paint the picture for him of what I saw inside my head. I explained I could not be the same hardworking adventurous woman he married any longer or live the life we’d planned together just a few short years ago. I had been to hell and back and the journey had changed me deep down to my core. I’d had to change to survive this grueling experience, but now I couldn’t turn back. My empty purposeless days were slowly killing me as I waited for life to return as it was before. Everything I thought I knew about myself had been effectively stripped away, down to the bone, leaving me vulnerable until I figured out who would emerge from this illness-driven cocoon.

As a young mother, my life revolved around my children. I had my first at the tender age of 16. I went from being a student, a daughter, under my parents’ care to a single mom, reckless, full of bad taste and a driving need to prove the stereotype wrong. I worked hard at one job, sometimes two. I worked at good marriages, most of which turned out badly. I never considered my husbands would be left behind, that my parents would grow old or infirm, or that my kids would grow up and move away. I never dreamed the day would come where I didn’t punch a clock or couldn’t do it all by myself. I always thought one day that my life would finally belong to me, but not like this. My illness stole those “one days” I dreamed about, making my fantasy retirement unachievable and rendering me useless to every around me, including myself.

This brings me to my realization. You cannot live in the past, nor can you live in a future you planned out as a naïve little girl. My life today is not about my family or my once upon a time dreams. My life today, for better or worse, centers around my chronic illness. Whether I like it or not, it may not define me, but it defines how I have to live. My life has to change from the last year of bitter resentment and broken dreams to tomorrow’s achievable goals and renewed inspiration. This means when something has to give, it might be more expensive than I can afford, but that the risk of standing still will bankrupt me or worse.

I live on a quiet farm in a quiet town. My sleepy little province doesn’t have support groups for people like me in chronic pain. Our tiny hospital is the pits and I wouldn’t trust them to save a dandelion, much less the life of someone with such complex issues as mine. Our list of doctors are like a revolving door of under-qualified and often overworked professionals. I can no longer work and even if I could, there are so few places that would hire someone as unstable as me. This means six out of seven days, I stay at home, inside my little ranch style house, watching the paint peel. Or maybe instead, I make one of my weekly four hour round-trip journeys to the nearest metropolitan area to visit my various doctors. If their offices offer support groups, this means I need to make that same long arduous journey into the city to attend them and the likelihood of making new friends that understand my country life is small. God help me on the days I cannot drive myself and someone has to take off work and chauffeur me.

What this means is we are being forced to confront another big change due to my disease. The dream farm my husband and I bought only five short years ago does not suit the disabled woman I have become. The teamwork in running tractors and raising crops is beyond my capabilities. I need a close medical network and support groups of others like me to survive this new life ahead of me. I need him to compromise with me, to take these old dreams and trade them in for a sustainable life. It’s unfair and I know it’ll take time for him to adjust. I remind him he has a choice, even if I do not. But this is who I am becoming, a woman with different needs, who requires a different kind of support.

“I know it sucks,” I tell him earnestly, “but something has to give.”

“I know,” he says just like he did last year when I quit my job, or the year before when I underwent several experimental surgeries, or yesterday when we gave up one more luxury I can no longer share with him. He knows this could mean a new town, a new kind of treatment, or something off the wall he doesn’t even want to entertain. The camera pans up over our heroine and her husband and the screen goes dark. Their words echo across the night sky. No one gets to know what happens next, including us, but something has to give.

Getty Image by MatteoCaremoli

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