Here’s the thing. You see people like me in a scooter or a wheelchair and you want to help. You do. And you’re nice, mostly, so we let you. Mostly. So you hold open doors or you carry stuff or you grab us a cup of coffee or you hand us the pencil or you pick up the keys we drop. You get your mitzvah, and we get our caffeine. You feel good, we feel good. A win-win, right? And most of the time, that’s how it works.
Most of the time.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.Most of the time I’m grateful for the help. Most of the time, I’m happy not to have to use my crutches like chopsticks to pick up my wallet or my pen or the dollar that slipped out of my hand on the way from my purse to the vending machine. Most of the time, I can find a way to stash my coffee between my legs or my arm and the arm of my scooter and shake your extended hand. Most of the time I’m able to muster a smile or a thank you or a tip in the grocery-store parking lot.
But we all have those days. I know I do. Those days when we’re tired or sad or, for some of us, experiencing more pain than normal and we just can’t pull it together to be happy or grateful. To smile enough to thank a stranger for opening a door that by rights should have had a handicapped-accessible button that allows us to open it ourselves. To be sufficiently grateful for the help being proffered.
And it’s that level of required gratitude that can weigh you down as much as legs that just won't do what you need them to do when you need them to do it.
My own disability started with a car wreck roughly six years ago. I’ll spare you the details, but I blogged about them here back in the day. Long story short, six years later, I still struggle to walk more than 15 yards at a clip without crutches or a walker, thanks to a singularly unfortunate combination of shattered bones, ruptured tendons and ligaments, missing cartilage, and excised muscle.
Inside my house, I move from my bedroom and bathroom at the rear to the living room and kitchen using the furniture along the route as an impromptu handrail. I experience near-constant pain, so I have to think through and plan my every move to minimize my discomfort. I carry my purse or a tote bag around my neck as I go, strategically collecting the things I’ll need to minimize trips back in forth. I sit when I cook and wash dishes.
I make sure the things I need to cook or read or mend are within arm’s reach before I sit down because the act of standing up, really, is torturous. When I wake up in the morning, for example, I’ve trained myself to balance on my right foot while holding myself up using the corner of my vanity and my headboard to avoid putting any weight on my left foot. If the left foot goes down first, I either go down with it or I sit back down on my bed immediately because of the ferocity of the pain.
There’s nothing I do in life that doesn’t involve planning – from figuring out which hand to carry something in so I can still hold onto my crutches to figuring out how to get something from my car to my porch and, then, inside my home and, finally, to wherever in the house it needs to be.
My 12-year-old daughter picks up the slack many days. She carries in the groceries and carries out my computer bag and helps me carry stuff through the house. I’m lucky to have her for so many, many reasons, but it’s impossible to deny that this is one important one. She helps with things big and small every day. She can’t, though, do the one thing we all need to do several time a day: go to the restroom.
Peeing is, in fact, a big deal. It’s such a painful hassle that I avoid it as long and as often as I can, holding it to the point, like many people with disabilities, that I frequently end up with bladder infections.
But here’s the thing. Whereas most days I can pull it together, most days I’m grateful, most days I’m truly and honestly just glad to be here, having survived that wreck and the ensuing physical pain and frustration in its wake, some days… I can’t. Some days, I hurt too much to kiss a stranger’s ass. Some days, I’m just too tired to look past an able-bodied person using a handicapped permit to take the space right next to the store.
Some days, I feel sorry for myself.
There. I said it.
Some days I can’t pull myself out of my longing for my good old days, when it was no big deal to forget and leave the book I was reading on my bed. To miss traveling and working in other countries, buying air tickets and throwing things into a suitcase without a second thought. To miss standing up in the morning and taking a shower standing up. To schlep a couple of bags and a purse from my car to my office without making multiple trips or begging for help. To mop my own kitchen floor.
Some days, I resent having to ask for help. Having to rely on motorized transportation that, as of late, so broken down that it's failing me. Having to take a pain pill that I know will either blunt my day or pull me into sleep. Having to spend money on help around the house or on a mobility scooter and lift not covered by insurance or on pain pills covered badly by insurance.
Most days, I’m good. Most days, I’ll smile at you as you open that door. Most days, I’ll thank you when you pick up something I’ve dropped. Most days, I’ll focus on the good in my life and not the bad. Most days, I’ll be grateful that I had all that time living in working in 22 countries and not focus on the fact that, until and unless I replace my broken mobility equipment, I can’t, practically speaking, take my kiddo across the state lines for a cheapo weekend break.
Most days, you’ll find me thrilled at teaching – and grateful that what matters in the classroom is what comes out of my brain and my mouth and my heart and not how well I can walk down the hall or across the room. Most days, my happiness at finding the one working mobility shopping cart at the grocery store charged and unoccupied will outweigh my irritation at the fact that moves slower than I do on crutches. Most days, my happiness at still being on this planet will outweigh my worries over affording new equipment over the summer before my teaching year starts again.
Most days, I’ll be able to look past the teen who parks in the handicapped slot and jogs into the grocery store. Most days, I’ll be happy to ignore the stares and the tendency to look past me and not at me as I sit in my scooter. Most days, I’ll brush off your tweens’ mobility-scooter “go-cart races” through the grocery store. Most days, I’ll understand when you schedule meetings on the second floor when there’s no elevator or place supplies on the top shelf that’s impossible for me to reach or take the first seats by the door, forcing me to crutch myself along to the far side of the room.
Most days, we’ll get along just fine. But when we don’t, I hope you’ll remember this diary. When I’m exhausted, when I’m unable to move, when it hurts just to set my foot on the floor, when my leg has already buckled underneath me, when I’ve fallen to the ground, when I’m struggling with putting bag handles around my neck and planting my crutches in the dry spots, or when I’m simply mourning my previously more mobile life, all you may get is a quick “thanks.”
And if you need more than I’m able to offer at that time, I apologize in advance. If you need more than I can muster in that moment, I’m not a bitch. I’m not crabby. I’m not a curmudgeon. I’m not homeless. I’m not a drain on society. I’m not in need of a handout. I’m not deaf (so, please, don’t shout). I’m not a hater. I’m not wallowing. I’m not desperate.
I’m just…human. Granted, a slower version of human, but...human.