Relying on others for simple daily care activities will ALWAYS be a part of my life

Most of my content revolves around empowering people through authenticity and vulnerability. Sometimes, authenticity can highlight things that aren’t easy to talk about or involve things that take a great deal of emotional labor to express.

Today is one of those days. A day where being authentic is hard because I’m divulging parts of my life that I like to keep in a sealed box — which isn’t healthy. I’ve found that being open and expressing my emotions about topics that make me, at times, uncomfortable can be met with a sense of relief. Things like talking about how hard it can be to swallow the fact that relying on others for simple daily care activities will ALWAYS be a part of my life. Today, I’m opening that box in hopes to spread awareness to what living life as a disabled adult looks like without a pretty Instagram filter on it.

Being disabled isn’t a walk in the park.. (haha see what I did there, punz for dayz). Sometimes I feel suffocated knowing that I can’t go off the grid. I can’t turn my phone off or chuck it out the window and hop on a flight to solitude. I can never go more than a few hours without having to interact with someone. I can never take a shower by myself without anyone in my apartment. I always need someone and always will.

While most days I don’t let the fact that I can never take a shit without interacting with someone get to me, sometimes these facts creep up on me like a dormant monster that’s always hiding under my bed, waiting to come out and scare me. I’m using the metaphor of a monster to compare the fact that I’ll always need to rely on people for the rest of my life because ... sometimes it scares me. What if one day I have no one?

Not only is knowing that fact hard to swallow, but actually having adequate care is a huge challenge. Say I had millions of dollars and could afford private around the clock care and have all my needs met “perfectly,” it still doesn’t mean that I don’t need help, and that fact weighs heavily on my mind. Besides, I don’t have millions of dollars and I have to rely on ableist state services to be able to live independently, which is a story for another blog. 

The mental stress that comes from constantly worrying about my care takes up more of my mental space than I care to admit. Because this fact will remain a constant in my life, I try to let the days I dwell on it drift away until it decides to rain again.

It’s okay to let it rain. It’s okay to talk about how hard it can be to manage your own personal care. Not many people might understand exactly what managing your personal care entails, but I’m hoping this can shed light on just how instrumental it is in my life.

I didn’t write this to get sympathy or make you feel bad for me (gross). I want to show people that authenticity comes with the bad, too. It comes with the tough subjects and inner emotions I live with. I think I avoid writing pieces like this because, in a way, it perpetuates the disability stigma I work my ass off on breaking.. the one that says disabled people have unimaginably hard and unfortunate lives and need your ableist pity. It’s important to know that every single person has different struggles and just because you can’t understand them sometimes, doesn’t mean they deserve pity. It means you need to have a little more imagination. I live an amazingly fulfilling life but I have struggles just like anyone else. Struggles aren’t exclusive to disability.

Most days I go through my disabled life not giving it a second thought, but some days I hate it, and that’s okay.

Alex Dzimitowicz1 Comment