Disability

I wish sleeping was not such a chore these days. I’m once again waking up at 6 am, something that I don’t particularly enjoy doing. My sleep schedule has been thrown off since the hospital and I find myself still waking up in the early mornings because that is when the doctors come in and I crash in the early evening because I woke up so early.  

Honestly between the lack of sleep, the aches and pains, and my limited mobility this is one of those times in life that disability is making me very cranky. I wish I could say that it is easy or that I always go with the flow but that is not the case. I get as frustrated as anyone.  

I don’t focus on it because it does me and those around me no good, but I acknowledge that sometimes it is hard. It is frustrating to see people take for granted so much of what they have as far as ability.  I’ve learned quickly that ableism really burns me.  There is no quicker way to alienate me these days than to see people ignore or complain about the fact that people need accommodation for their disability. 

It gets maddening that people also tend to associate mental ability with physical ability. People used to describe me as having the gift of gab, yet with my heavy speech impediment due to the cancer, I spend too much time locked in my own head because people don’t have the patience to really hear what I’m saying. I miss laughing and telling stories. I write as an outlet because it allows me to express myself. I also hope that other people might see themselves in my writing.  

I often feel lonely, and it is important for me to say some of the things people usually don’t say out loud because it allows others to know they are not alone. If you know a person who is disabled, I want you to take a minute to appreciate the ways in which just doing the simplest of things can leave them feeling tired and as if they must do twice the work just to function. 

I often feel like I have to apologize and explain that I’m not complaining because I truthfully don't want to be that person. Yet I also think people are made so uncomfortable by the idea that in the end, we all lose ability, which means that even the most well-meaning people often rob me of my narrative so they can feel like they are praising my braveness or inspirational nature.  

I just want to speak the truth that disability is hard. That those of us who have to deal with it daily often aren’t helped by the narratives that are out there. I don’t want people feeling lucky for what they have seeing what I go through, that is condescending to the life I live and love. I don’t want to be seen as a tragedy. Even if I wish I didn't have to deal with it all the time, I don’t want to be pitied, no one does. It reduces disabled folx to objects of pity.  

I am lucky that I have some incredible people in my life who have walked with me on this journey. I’m grateful for my loved ones who remind me they see the effort I put in on a regular basis. That recognition helps me feel like I’m doing the best I can. That is all I can ask of myself.  

Writing like this helps me get this off my chest. By expressing myself in this way I feel like I still have a voice, and importantly it makes me feel like I still have a lot of myself to offer the world. That is why I want to keep writing about disability, about spirituality, and about my silly little passions that brighten my life. So, I keep writing, and keep living because that makes the difference.  So, I look forward to more insights, rants, silliness, and creativity. I may be disabled but I am also still able to create which is a magical thing.