I tried not to make eye contact with her in the elevator while I pushed the button for the floor directly above us. I knew that it was bound to happen sooner or later, and I hoped that by not looking at her, she wouldn’t engage. But it did happen. It only happened just that once, but it was enough to make me feel about an inch tall.
“You’re so lazy!” she exclaimed. It was meant as a joke, but she wasn’t exactly known around the office for being timid or tactful. Joke or not, I immediately went on the defensive. She didn’t know I didn’t sleep well the night before. She didn’t know I could’ve (and would’ve) climbed the stairs, just one floor up, but I chose to conserve my waning energy instead...
Clare was gardening in her backyard when she saw it: a giant, vivid rainbow spanning across the sky. Clare’s eyes widened. She’d been waiting her whole life for this. Her friends had found gold at the end of a rainbow and all of their dreams had come true.
And now, it was Clare’s turn...
One of my favorite books when I was a kid was a Choose Your Own Adventure book, in which I chased Carmen Sandiego all over the globe. Paragraph by paragraph, I decided what my next move would be in order to find her. It was fun and, without me knowing it at the time, it taught me how to make educated choices and that, based on those choices, there would be some sort of consequence, no matter the outcome.
Having a disease like MS is a lot like a Choose Your Own Adventure book. My entire day is filled with important decisions to make that will carry a great impact, even lasting into the next few days. For example, have you ever spent 20-30 minutes deciding what outfit to wear? No, not because you want to keep up with your trendy coworker, avoid wearing the same dress as someone else at a party, or because you think your butt looks big in those pants...
Do you remember what it felt like to stand atop a skyscraper, strap on your cape, and soar through the clouds? You were invincible. Do you remember?
My little brother and I would race through the house in our Superman pajamas, weaving around furniture and stretching our arms out for optimum speed. We’d lift obstacles with our super strength and untie damsels from railroad tracks and rescue kittens from trees. We’d fight villains with lasers that shot out of our fingertips and overwhelm them with our sweet karate moves.
One of the best parts of writing for the MS Connection blog is reading the comments that readers leave.
Yes, you read that right. Sites like this are some of the few places, it appears, on the internet where the “don’t read the comments” rule doesn’t seem to apply. I read every single comment that is left on here, on my personal blog, and on my social media posts. And I delight in receiving emails and private messages. They’re equal parts heartbreaking and encouraging...
Quietly, a phantom thief, you forced yourself into my life, slowly but violently inserting your existence into mine. Uninvited, you rooted yourself into my very core and silently grew inside of me, victimizing my vulnerability and tattooing your intention on every piece of me. You suck nearly every ounce of energy out of me, while I desperately and frantically try to forge, steal, manifest any remaining vigor I can manage to grasp and tear out of your hands.
If I’d never met you, people wouldn’t tilt their heads to one side, eyes full of pity, and offer their condolences when they learn I’m sharing my life with you. I wouldn’t have to suppress memories of what I perceive my abilities once were, because they’re too painful now...
I’ll never forget him in his ill-fitting trench coat and his cartoonish large head towering over us, just a bunch of wide-eyed, snot-covered children at Tonawanda Elementary School. His name was Officer McGruff, the Crime Dog. He pointed his furry finger at us while an accompanying, un-costumed police officer warned us against the dangers of drugs.
I looked up to McGruff. We had a bond. We understood each other. I knew this because a year or two earlier, I had won a safety poster drawing contest and was awarded with my very own plush McGruff doll. It may as well have been an official sheriff’s badge and a key to the city. I was now a safety expert. I took everything he stood for to heart. I mean, he had a trench coat and everything!
My nemesis, the alarm clock, is shouting at me, urgently notifying me that it’s time to leap out of bed and go to work for the day. My eyes snap open. I can see! Without thinking at all about it, I contract the appropriate muscles in my side and my arm to slap the snooze button for the fifth time this morning. I have to use the bathroom, but I can hold it and I take a moment to appreciate that fact.
Sunlight is seeping in between the window blinds, slowly illuminating the room with its warm glow. What else can I see? ...
July 1, 2013
Look at you sitting there, tapping your feet and fidgeting with your hands in that cold, grey exam room. You’re moments away from receiving medical confirmation of that little monster that has been haunting you over the last few months, probably years:
You have multiple sclerosis...
My heart is in my stomach.
My mouth is dry and he’s standing there, almost bracing himself, scanning my face for a reaction.
But I am numb—not in the tingly MS way, but I’m briefly stunned, mentally and emotionally.
My husband has just revealed to me that a longtime friend of his, someone he trusted in moments of private human emotion, has likened me to a child and, further implied, a burden...