I became disabled in my mid-thirties. So I lived a lifetime as an able-bodied person, and I always wonder if anybody else who starts life as a disabled person ever misses the life they had before. Not necessarily the life they had then but mobility and how things seemed to just be within an arm’s reach with little to no effort.
The other day I was telling a date of mine that I felt so frustrated I felt like I wanted to get up from my chair and run out in a rage. Since then I’ve noticed how I will do something and think about how I would navigate it if I was not disabled. Maybe it’s because I feel like I’m not experiencing the outside world enough; I spend a lot of my life watching the world go by.
There is an urgency that being able-bodied and feeling the soles of your feet touching the ground and pounding the pavement brings. I sit on my balcony and watch people going in different directions with their walks varied as they are. I always wonder if they ever think about the effort it takes to get your feet to follow the instructions that your brain gives to keep walking; the almost uncalculated effort it takes to cross the street sometimes. I watch how people interact with each other and more often than not, I try to see the shoes they are wearing.
I used to love shoe shopping and if I saw a shoe I liked, I bought different colours of the same design so I wouldn’t worry about matching outfits. When I started working, I remember buying shoes so much I’d get home before my parents and hide them with an idea to slowly reveal the shoes. Back when I lived as a young employed woman with no expenses besides family obligations and myself, shoes were my biggest expense. Now living with socks on 95% of the time, the socks don’t match. How times have changed.
I have since regained a bit more of my body control. Healing has been ongoing and I’m sure it’s going to be for the rest of my life. When I do think about it, the things I miss are things that have something to do with vanity, like being complimented about my legs, which were my bragging points that made me feel extra confident. I miss the surety that comes with mobility, the certainty of constant movement without second thought.
I miss dancing, although I never used to dance. I tried a few times in teen-hood and I realised that my feet had limited rhythm. I didn’t even do shoulder wiggles. I was too embarrassed but lately, all I want to do is go dancing and I day dream about spinning around in the middle of the dance floor. I probably will have to take a dancing class with other people who look like me physically because I can only imagine the spectacle that an innocent dance would turn into in the time of going viral without one’s consent.
I used to love feeling the rain on my skin sometimes and I remember how the droplets felt on my skin post disability. The only disadvantage now is that I can’t just get absolutely drenched; it would ruin my chair and I would be stuck in bed until it dries out. I could put a protective cover on it though so maybe that isn’t completely out of range yet.
Time. Getting ready to leave the house needs time; time to prepare myself emotionally and mentally for crowds because ableism is everywhere. So I spend about a day on average convincing myself that all will be well should I decide to leave the house. The time it takes to get ready, as I’m learning more about myself, has decreased from needing 90 mins to just get ready to leave the house, to 1 hour now. With a few adjustments here and there, I could predict, to a certain extent, where I could be at what time. Lately it’s a decision that is made with others in control, be it the hailing drivers or the lack of parking that I tend to encounter where I go. Ableism as I said.
My daughter loves the beach. She used to love playing in the water before she learnt how to swim and since she learnt, whenever she can, she finds herself in water and I miss being part of that life with her. Her biggest wish is that one day, I will be healthy enough to take a walk with her down the beach and feel the sand in between my toes. It might happen, it might not, and if it never does, the most I can do for her is go to a wheelchair accessible beach and hope she doesn’t feel overwhelmed by curiosity. Learning how to swim will probably bring us even closer.
I miss getting invites to events; weddings, baptisms, baby showers. I miss being part of growing communities. Whether conscious or not, people consider their options and what it would take to invite me to a celebration of life. I could be projecting from hurdles I’ve experienced securing an outing for myself. But looking at life post disability and knowing that in another life I wouldn’t be a second thought, it’s hard to ignore and pretend it’s not real.
Life has a lot of unexpected pauses when you have a visible disability and I miss life without pause. And yes it goes without saying, I miss spontaneous sex.