Meet my Peeps Guest Series: I met Sarah some time last year. When I first met her, I had no idea what a great writer she was. She was often present in online conversations and I remember wondering how she managed the caregiving role for her unwell husband at the same time as dealing with her own illness. Aside from her illnesses, Sarah is a talented musician and bright spark. I didn’t know she was a writer until she responded to my Letter to Dysautonomia post. We began corresponding and she got hooked by the writing bug! This is the first of Sarah’s guest posts.
How do you see yourself? Sarah is looking at herself through the eyes of others…
I broke my ankle in early 2009. I wish I could say it was from something exciting, like a jet skiing accident. But I was just walking around my room, tidying up. I sat on my bed to grab something from the other side; it only took a few seconds. When I stood up, one of my legs was completely numb. I didn’t realise until I had taken a step, placing all my weight on it, and there was a sickening snap, my ankle twisting at an unnatural angle as my leg crumpled.
Because of my EDS* getting around on crutches was very difficult. Trying to move my bodyweight around using just my arms = dislocated shoulders. My broken ankle and torn ligaments also meant I couldn’t drive, so I was stuck at home. A sympathetic couple from my Church stepped in and gave me a second hand mobility scooter. It had belonged to their elderly mother, but she’d just moved into a nursing home, and so no longer needed it. It was all mine. It was a bit embarrassing, but kind of cool to ride him around.
He was red, my favourite colour. I named him Wally.
It was pretty easy for people to see why I was riding Wally. I had a big cast on one leg, and a pair of crutches tucked under one arm. I got lots of grins and thumbs up. “What a clever idea,” people would say. “That’s heaps better than trying to get around on crutches!”
Eventually, my ankle healed. I could drive again. Wally got tucked away in the shed. Everything was back to normal. But slowly, my health continued to deteriorate. Eventually, I had to surrender my license. I wasn’t well enough to drive anymore. We sold my car. And I was stuck at home again.
After a while, Wally came out of the shed. I started using him to drive around the block, taking the dog out for a run to stretch her legs. Later I began driving him to my parents’ place, to visit them. Eventually, I progressed to taking him grocery shopping. I’d park him outside the store (he’s not an indoor model – he’s quite wide), do my shopping, then load him up with groceries and ride home. I got quite good at packing: I could fit a whole trolley-load of groceries on there! I was so proud that I could do the shopping by myself, instead of having to drag my husband down to chauffeur.
But I noticed something different. I didn’t have a big cast on my leg anymore, or a pair of crutches tucked under my arm. People no longer smiled at me. They frowned. Even if I made eye contact with them, gave them a friendly smile and cheerily said “good morning”, they didn’t smile back. They muttered under their breath. They made rude remarks about my weight. They pointed and laughed, and mocked me.
And I felt ashamed. I was no less disabled than when I had a broken ankle. In fact, I was more disabled, as it wasn’t just my ankle that was broken; it was my whole body. But my disability was invisible, is still invisible now. When people look at me, they see a healthy 25-year-old girl riding around on the footpath on a mobility scooter meant for old people. They don’t know the truth.
At first, it would really hurt when people made fun of me, or made rude remarks while I was down the street. But my two younger sisters changed my attitude. They were 9 & 11 years old. They loved to sit on the floor of the scooter and ride around with me, their legs resting on the plastic wheel arches. My youngest sister actually thought that this was what the wheel arches were designed for, so that Grandmothers could drive around with their grandchildren, and the kids would have somewhere to put their legs! Their enthusiasm for my cool scooter helped me to be less self conscious, even when they weren’t with me. When people stared and pointed and made rude remarks, I’d imagine my sisters were with me, with big beaming smiles on their faces as I drove them around.
My sisters grew into young adults – they wouldn’t fit at my feet on the mobility scooter anymore (even if they’d wanted to continue being transported in that way, which I highly doubt!). But when he started kindergarten, my nephew started riding with me instead. Every Monday during the school term I’d pick him up from the bus stop in the afternoon and take him back to my place, on my scooter, for piano lessons. He thought it was the coolest thing. He would sit high and proud on my lap, with his bag at his feet, and do a royal wave to everyone as we went past, like he was some kind of king riding away in his chariot. Awed voices of other school children would follow us as we rode away: “Whoa! Look at him! That’s so cool! How come he gets to ride on that thing? That’s awesome! I wish I got to ride on one of those!” It made me smile, every single time.
Since his brother also started school, the schedule has changed, and it’s been a long time since my nephew has ridden with me (his Mum now drops him off at my place and picks him up again afterwards). Without the frequent reminders of childish excitement about my scooter, I find myself having to work harder not to wither under the stares and snorts of derision as I ride past.
Recently, I passed by the local football field on my way to the store. It was early evening, and there were several football teams that had just finished training, and were also headed back downtown. That meant I had to pass a line of about forty fit, healthy, testosterone-fuelled guys. They were all young adults, about the same age as me. The snickering started down the end of the line and progressed to pointing, hooting and yelling. I wanted to ride my scooter into a hole and disappear. But although my knuckles may have been white from clutching the handlebars so tightly, I sat up straighter, gave them a cheery wave, and then proceeded to tune them out.
Eventually I got past them all, and was left alone to ride through a lovely part of the park. Trees, grass, flowers, birds. I took deep breaths and tried to ignore what had just happened. What I knew would keep happening as long as my disability was invisible. I rode down to the footbridge to cross the river, and found two boys sitting on the edge, fishing. They looked about 10 years old. They looked up as I came onto the bridge, and one of them called out to me.
Inwardly, I cringed. “Yeah?”
“Is that your ride?”
“Yeah, it’s mine”.
“It’s pretty cool!”
For a second, I looked down at my scooter again with my adult eyes. The stuffing is coming out of the seat, and one of the handlebars is chewed up. The scooter is dusty, and rattles and whines noisily when I use it. And worst of all, it’s meant for old people – and I’m not old. But then I looked back up at him. His eyes were wide and sparkling as he beamed at me with an enormous smile. And I couldn’t help but smile back.
“Yeah, it’s okay. Thanks.”
He went back to his fishing, and I kept going, contemplating my scooter through a child’s eyes again, and smiling.
xx Sarah Phelps
How do you deal with it when people treat you differently because they can’t see your invisible illness? Personally, I wish I could just always shrug it off, but I have to confess that it does wear me down over time.
* In addition to Postural Orthostatic Tachycardia Syndrome (POTS), I also have Ehlers-Danlos Syndrome (EDS). One of the most frustrating symptoms of my EDS is hypermobile ligaments. Ligaments are the things that are supposed to hold your joints in place. But mine are super stretchy, and let my joints just kind of go wherever they want. That means frequent dislocations and subluxations (semi- dislocations).