As I’m coming up on almost a year of the decision that changed the course of my life forever, I feel both really good and really bad.
August is a time full of hard decisions.
This time last year the daunting thoughts were entering my mind. I had finally asked my boss to schedule me for the part time hours like I’d been hired for, and slowly was leaning towards reducing my hours even a little more as we had new recruits who joined our design team.
I knew it would be a month until classes started back up. I had a busy semester ahead of me – I had to make up for some of the design classes I’d missed due to transferring while also taking some that had been canceled last minute over the Spring semester. 18 credit hours was a lot to take on, but I knew if I did one more semester of that I’d be smooth sailing the last year and half.
But 18 credit hours meant a little less time for work, and it was becoming apparent that having a more limited schedule meant that in our sales driven company, when my clients stopped back in and I wasn’t there, another designer would take over the sale and rarely give me the required 50% commission. Which meant I may be grasping by straws to live for a bit.
And the idea of choosing just school or work felt so out of the question.
But, as the story goes I chose my health and hastily moved home.
And now that I’m back into my own apartment, still very close to home, the impostor syndrome wants to rear it’s ugly head.
I’m not disabled enough. I’m not the right kind of disabled.
When I look in the mirror, other than the ever darkening under eye circles I don’t look any different than the other 20-something you pass in the grocery aisle.
I can walk (occasionally directly into walls), I can talk, and I can exist in many spaces a lot places where physically disabled individuals cannot.
The last few months I’ve discovered an incredible community of disabled advocates and people on Twitter, but I don’t feel like I belong. I certainly cannot represent any of them because that isn’t my space to occupy. But also because I can’t even begin to understand the vast spectrum that disability is and the millions of implications of it.
And so although I can share opinions and participate on some levels, I don’t feel as if I belong or am welcomed.
When I interact with the people in my leasing office or maintenance people, I feel like it isn’t real. That it wouldn’t matter if they knew my entire story, they just seek a young and bright new tenant. They can’t grasp that having a crew come out on multiple occasions because they didn’t do something right in the first place is incredibly difficult for me. I cannot be up on time without being very ill. I cannot be present when there’s going to be noise. But if no one is here to watch what they’re doing, they’ll have to come back yet again.
I have no business being home all day not really doing anything. I should be working. I should be in school.
Especially since I’m on my own again, this thought bombards me constantly.
It’s the idea that if I can make one small stride I should be able to make the rest of the strides, and the strides should be easier and begin to come more naturally.
If I can have a few good days that are strung together, there’s no valid reason I don’t start doing something with those days to take advantage of them.
Yet, the thought doesn’t change the reality of it all.
It doesn’t change the first 3 hours of my day being limited to slowly waking up and allowing my body to process being alive. It doesn’t change how incredibly sick I get when these mornings are disturbed.
It doesn’t change that I can spend all day slowly attempting to prepare a meal that I can eat for the next few days.
It especially doesn’t change the days where I can’t do a thing. Where I find myself hoping to find the right corner of the couch to lay on. Where I force myself to eat and try to lay down again, because maybe this time closing my eyes won’t hurt worse than having them open, and maybe this time I can sleep for an hour or so and wake up feeling a bit better.
It doesn’t matter that I’ve healed to the point where “lost days” don’t impact me negatively. I used to be so angry and frustrated with everything I was missing. Now I know my body just needs to rest and allow the worst of the pain to pass. I know that it will in fact pass and that anything I’d hoped to accomplish will still be waiting for me the next day.
Whatever the actual thought may be, impostor syndrome is hard to deal with. It doesn’t make me sad or even angry, but it makes me feel frustrated.
Frustrated that I feel like my life isn’t real.
How could I possibly be out on my own, or seen in public, or able to afford decor for my apartment if I was in fact so sick? Breaking news, I’m so sick the government gives me some money every month and it doesn’t all go to medical expenses.
How could I be on social media or have time to write if I’m so sick?
How can one day be so good and the next be so full of pain? How can the symptoms continue to interfere so much, even when the pain isn’t necessarily there?
I don’t know the answers either.
But I know that everyday I am growing and I am learning.
And to be honest, the answer is really clear. It isn’t me, its you, and most people around you.
It’s the image that’s been created, the expectations that have been formed for what disabled or chronically ill are supposed to look like when in fact they look just like everyone else.
And lastly, I’m frustrated because this disease, it’s apart of me and there’s no way around it.
Sure, I look in the mirror and the image is no different from what you’d expect of someone “healthy” my age. But I see everything I’ve lost.
I see those dark circles. The in-concealable circles. I know that a good nights rest wouldn’t touch them.
I see the now short hair. I see the look in my eyes of hope as my hair slowly gets longer when I pull it back into a ponytail. I see the pain I was in when I knew that cutting it off only made sense. If it hurt to lay on and all I’d been successful at doing for 6 months was lying down, cutting it just made sense.
I see my narrow frame. The arms that were once toned. The face that has been overly thin and sometimes plump. I see my ribs when I twist just the right way.
And I know that the girl in the mirror is real, but the girl in the mirror couldn’t be me.
But it is, and I’ll learn to love her again, I promise.