Its 6 am and I can’t sleep.
My pain woke me up around 5 and its become abundantly clear that sleep and I are done for the night. My wheelchair sits diagonal from me while I lay in my spot on the couch and I realized a minute ago that I need to apologize to you, my wheelchair.
Now that feels kind of dumb to write but its honestly true.
I have sent that chair MANY hateful glances, referred to it as stupid at least once every 2 weeks, and bemoaned its very existence at least a few times a month.
Let’s be real though.
That chair has been my lifeline since it rolled into my life last summer. My first wheelchair was a clunky rented on from the local hospital, my 2nd a short lived disaster because it was too big to fit into any doorway in our house. This wheelchair is my last one most likely (crossing fingers). It’s light, small, and has been in my life for a year now.
If I leave my house, Im in it. If I just get out of bed to start the day, most likely Im in it. Ive been doing my best to transition into using my walker but I’m pretty sure my ketamine infusion is wearing off and its become harder to switch over because walking normally just hurts so damn much.
The only way that I have attended events like my brother’s wedding or the amazing drag show in May or just going to see my drs and PT is all thanks to that wheelchair.
Every day all day since the end of April 2015 I have relied on a wheelchair all day to get me anywhere I need.
It is important to recognize that its a privilege to just be able to get a wheelchair, some people can’t afford one or have to wait quite awhile dealing with insurance and red tape. I try to remind myself of this when I feel frustrated about it.
Yes a lot of feelings come with that chair but doesn’t almost every object we own hold some kind of meaning? We project hopes, dreams, fears, and a list of other things with so many objects in our lives. Things made of steel and cotton and wood, how many layered feelings we can attach to a simple piece of furniture, car, or house.
It reminds me of a quote by my favorite band The Weepies, “What can I compare you to, a favorite pair of shoes?
Maybe my bright red boots if they had wings
Funny how we animate colorful objects saved”
Becoming comfortable in the wheelchair has taken time.
When we first rented one back last March, I thought this had to be temporary. I thought surely this would be a small period in my life, that within a few months I would be back to walking and driving. We could laugh one day and I would say “remember when I was in a wheelchair for a little bit? That was so crazy.”
I had no idea that over a year and half I would still be using one on a daily basis.
I have graduated to “land PT” after being in PT since May. This is significant as it means my walking in the pool is “normal enough” I can be on land without falling and able to begin practicing walking on land. Its SIGNIFICANTLY harder on land. In water my gait is far more normal than out of water.
The very end of PT today was working on stuff I hadn’t even realized I did when walking.
My right leg hyper-extends every step from me placing all my weight on it for a long time. My left foot still doesn’t want to be totally flat and I had no idea how much I don’t engage my left hip to walk or how much I don’t pick up my feet.
My shuffle still seems to be engrained into my very being. So much of my walking includes me actively thinking about each movement. Just picking my left foot and rolling it through that motion of “peeling” my foot off the floor as I walk is something I have to force myself to do after months and months and months of walking on my heel.
There’s still a lot to work on.
I got ahead of myself and told my PT I didn’t need to push my wheelchair while I practiced walking…that lasted all of two steps. It was a little humbling to see that I have a ways to go and more work ahead.
It is what it is.
Being in a wheelchair has been a transformative experience, one I never considered I would be in.
Yes when I first got sick with Lyme and was rapidly declining, being in a wheelchair seemed like a possible fate. I remember my first time in one at my first pain management dr a few days after that first fateful ER visit where I knew something had gone terribly wrong after my spinal injection. I entered the office and could barely walk, the receptionist ran to get me a wheelchair. It was a very surreal experience after walking perfectly normal 7 days before.
Yes whenever I was taken to the ER and could barely stand from pain or exhausted from vomiting all day, I would be placed in a wheelchair but truly in my heart, I never believed it could happen.
And then it did.
I have learned a great deal about disability and how we treat those who are different. I have learned that the world isn’t wheelchair friendly and that there’s plenty of places I can’t go in my wheelchair. I’m not sure I will ever forget that depressing demeaning train ride back home from NYC, my first trip in the wheelchair. The shame of my wheelchair barely fitting down the aisle, of everyone staring as I cried in frustration.
I may always remember the day I FINALLY felt well enough to go out to brunch with Sean and then we arrived at the restaurant to find a long series of stairs I couldn’t climb.
I may always remember the look on stranger’s faces as they take me in. I always do my best to smile at them to tell them, no please don’t feel sorry for me, don’t pity me.
For the most part people are kind. They race to hold the door open. One woman even insisted I go ahead of her in line at a busy store during the holidays. People smile back and it isn’t one of pity, its one of mutual politeness.
Some people still act normally to me.
They compliment my ever changing hair color (the blue hair was a big hit amongst senior citizens for some reason). They say they like my outfit. One extremely hot dude made my month by telling Sean how beautiful I was as Sean wheeled me to my brain scan. It made up for the man a few days earlier who told me I was too pretty to be in a wheelchair.
I know he was trying to be kind, to make me feel “better” but it cut me to my core, this felt like a slight to the disabled community. Its a community I am now a part of.
It used to be hard for me to refer myself as disabled.
It felt wrong to say it, like it was an identity I wasn’t allowed to have because it had only been a few months. A well meaning friend told me to not call the wheelchair “my wheelchair”, to not identify as disabled. I tried to not identify as disabled just like I tried again and again to do whatever treatment I could to get me out the chair.
Time passed and I didn’t get out of the chair.
Somewhere around October-November I started to say it. I started to admit that yes I am disabled and this is part of who I am for now. I pray it isn’t who I will be later on but I have made some peace with that.
I have found a number of rad people on instagram who use wheelchairs, canes, and walkers. They are beautiful people who live full lives and do amazing stuff in spite of their disability. Some will never get out of their wheelchairs. Some can’t walk at all.
They are all more than just a person with a mobility aid and each person that is able to be being honest and raw about it has helped me immensely in understanding that yes, I am disabled but I am not less of a person because of it.
One woman Rebekah Taussig has really helped me view myself in a new way through her candor about being disabled. She radiates light in every photo I see of her.
She wrote something a while ago that really struck me,
“So being a cripple is endlessly slippery. Moving into this community is a rich mess. But identifying proudly as a cripple has the power to flip the script. It challenges the idea that normalcy is the highest goal and invites us to celebrate the parts of our selves we’ve been told to hide or hate – our strange and twisted parts. When wielded without shame, it dances brazenly on the fears of difference. It’s scrappy and defiant. It says, “Yes, my body is weird, do you want to see? Look closer, isn’t that wild?” The cripple has access to new ways of understanding what it means to be human and imagining what it could mean if we cracked open our minds and let in some fresh air. As we gather around the sparks of this word, CRIPPLE, we look up and really see each other’s faces, each spectacularly strange in the shadowy glow. We are no longer a single individual, fighting for a seat, but one who belongs to a peculiar and powerful people.” (You can read the rest here at the cripple manifesto)
Rebekah’s words resonated with me so deeply.
My body is weird. My body may not be like yours. My walk is weird and it is obvious that I am different when you see it. It is obvious I am not like you because I am in a wheelchair.
I am still a human with human feelings and human dreams. I am no less of a person because I roll this world instead of walking
I am sorry for the insults, the anger, and the spiteful glances.
You give me the ability to go anywhere I can even if its not anywhere I want and you have opened my heart to worlds I didn’t know exist. If I was Odysseus you would be my boat as we brave these treacherous seas together. Perhaps for now you are the sails to my ship?
Im a better person because of you and this experience.