But, did you know…
June is also Duchenne Muscular Dystrophy Awareness Month.
Yep, it’s true. You may or may not have known this. You may have seen a Facebook post about awareness to this lethal disease, or simply may have scrolled onward searching for the next cat video to share. You may have attended a local fundraiser, run a 5K, or completed push-ups in support of finding a cure for Duchenne. You may know of someone with Duchenne, and the challenges they face every day. You may have lent a hand every now and then and made someone’s day. In any case, you are hopefully aware of Duchenne Muscular Dystrophy, its cruelty, heartbreak, and unforgiving progression. And, sadly, you may be aware the disease has no cure.
But, sometimes, awareness is not just knowing about the subject itself. It’s not just knowing that Duchenne steals your ability to walk. It’s not just knowing how Duchenne affects every muscle in the body, including the heart and lungs. It’s not just knowing of the slow, torturous progression on all life fronts from health to friendships to simple everyday tasks. No, sometimes, awareness is to understand the life you have without Duchenne. Sometimes, it takes an appreciation of what YOU have, to be fully aware of what those with Duchenne don’t.
Consider your ability to…
Run to the store / Pump gas / Wipe a tear / Scratch an itch / Shoe away a fly / Climb stairs / Use your arms for a hug / Turnover in bed / Stand in a shower / Stand at all / Write a check / Sit up straight / Push an elevator button / Step off a curb / Move in sand / Scoot upright / Wash your hair / Lather your body / Raise your hand for attention / Open an umbrella / Lift a drink / Lift a fork / Lift a spoon / Cut food with a knife / Wave to a friend / Play catch / Go anywhere without asking for help / Move freely in a crowd / Throw a ball / Eat unassisted / Get into the basement quickly during a tornado warning / Avoid a ball flying fast at you / Lean in for a kiss / Carry a tray / Load paper in a copier / Carry a book / Tip back a cold one / Race out the door / Throw a punch / Open your wallet / Bounce a ball / Get quickly out of bed / Open a dresser drawer / Ride a roller-coaster / Swipe a credit card / Hold a menu / Pull up socks / Load a DVD / Step into a car / Load the groceries / Drink without a straw / Pat someone on the back / Reach for something on a table / Use a can opener / Breathe unassisted / Tear open a bag of chips / Use an escalator / Cook dinner / Have blood drawn without an ultrasound / Sit up straight / Help someone off the ground / Put coins in a vending machine / Descend stairs / Clean the kitchen / Make a sandwich / Scream loud / Hike steep trails / Extend a hand / Shield your eyes from the sun / Push a shopping cart / See where you are going in a crowd / Step over a exposed root on a trail / Wash the dishes / Shoot a basketball / Sit in comfort / Heap helpings from a smorgasbord / Go on a date without your parents / Pass the gravy / Step through mud / Charge your phone / Pick up a phone / Cross anywhere on a street / Climb a mountain / Use a hammer / Plant a garden / Park wherever you want / Arm wrestle / Empty the dishwasher / Tend to a garden / Open a gate / Wash the car / Open a microwave / Enter someone’s home / Cut the grass / Open a bottle / Dress yourself / Tie your shoelaces / Use playground equipment / Put on shoes / Fix a tight waistband / Position your legs for comfort / Position your feet for comfort / Trim bushes / Pick your nose / Open a door / Tie a tie / Spray a bottle / Have friends visit / Hit a volleyball / Open a wrapper / Fasten a seatbelt / Pull up your pants / Dance more than a wiggle / Use a toilet / Hold open a book or magazine / Wipe yourself / Brush your teeth / Comb your hair / Rub a sore muscle / Open a soda can / Close a door / Pull a wedgie / Step into a bathtub / Open a laptop / Stop yourself from falling / Wash your hands / Vacuum the carpet / Rake leaves / Use a Q-Tip / Stretch in the morning / Hold a hair dryer / Put your feet on the floor / Hold a phone to your ear / Cut your toenails / Recover after you stumble / Go through a metal detector without a beep and a search / Crack your knuckles / Reach for anything on a store shelf / Carry in the groceries / Enter a home other than your own / Use an ATM / Pull the covers up / Swat a mosquito / Put out a fire / Throw off the covers / Apply deodorant / Hit a drive / Retrieve something fallen / Pick off dry skin / Move furniture / Change the sheets / Plug your ears / Put away the dishes / Visit a friend / Wash a window / Run / Start a fire in the fire pit / Dive in a pool / Put on underwear / Clean a countertop / Play tug of war / Put on a bathing suit / Park in a narrow parking space / Move without children staring / Move without some adults staring / Reach into your pocket / Call out for someone's attention far away / Push away a dog licking your face / Slide down a waterslide / Use nail clippers / Stand and pee / Write your name in the snow / Make snow angels / Jump into a pool / Scan an item at self-checkout / Reach into a washing machine / Turn a key / Wave to a neighbor / Pull weeds / Arm wrestle / Hand someone the correct change / Look behind yourself / Defend yourself / Sit anywhere in a stadium / Reach into a dryer / Throw a ball / Kick a ball / Flip a hamburger on the grill / Catch a ball / Fix a wrinkled bedsheet / Wade in a creek / Turn on a faucet / Sit anywhere at the movies / Reach into a cooler / Turn your head far / Open a present / Fold the laundry / Curl up in bed / Step over a log / Sweat from exertion / Fill the pet water dish / Lift anything over a few ounces / Apply sunscreen / Shovel the driveway / Clap your hands / Turn a doorknob / Feel ground beneath your feet / …
…to name a few
(note: these abilities are not all-inclusive. Much like life, Duchenne affects everyone differently. This is just our experience.)
Now, think about how you would react if you lost any one of the abilities listed above. Think how you would feel if you would lose two or three. Or four? Consider if you lost all of these abilities, with more certain to come. How would you react? How would you cope watching others do what you cannot? How would you go about your life…everyday? How would you feel knowing it will only get worse?
This isn’t to paint a dark or bleak picture of Duchenne. No, far from it. This blog is meant to bring you awareness for what YOU do every day that some cannot do at all. This is to remind YOU of abilities you may not even think twice about and to remind YOU of what those with Duchenne have lost.
Think about that.
What we generally take for granted, is an ability gone or soon-to-be-gone for those living with Duchenne. What we may consider second-nature, is a desperate and distant hope for others. For abilities we wouldn’t give a second thought about, those with Duchenne can only snort and shake their head…if they haven’t lost that ability already.
So, take pause this June and be aware. Not just of Duchenne, but of your life and what you CAN do. Be aware of the mood you carry, its source, and its effect on those around you. Be aware of how you would live if you didn’t have any of the abilities listed above. Be aware of abilities not listed above that should be. Be aware of what you consider your misfortune.
Then, be aware of someone living with Duchenne and consider how they live. Think of how they smile, laugh, and love…DESPITE their adversity, want, and knowing. Think about their growing isolation. Think about their increasing immobility. I challenge you to listen to them whine and complain about what they do not have. Listen hard, because you may not hear it. Better yet, spend time with them and see how they view this life we share. You may be surprised, because we can learn a lot from Duchenne, more than we may fully grasp otherwise.
This June, know that a person living with Duchenne…
…LIVES with a disease they did not ask for,
…LIVES with a disease through no fault of their own, and
…LIVES with a disease that steals a part of them every day.
Yet, they smile…
…because they can,
…because it feels good, and
…because they see life’s goodness as you should, too.
Yet, they laugh…
…because they can,
…because it spreads cheer and makes life better, and
…because it can be shared.
Yet, they love…
…because it’s beautiful, healthy, and positive,
…because it’s human, and
…because more than anything, it’s the one ability Duchenne can NEVER take from them!
HAPPY DUCHENNE MUSCULAR DYSTROPHY AWARENESS MONTH!
Thank you for being aware.
Now, let’s make some Smore’s!