C’est La Vie

I knew most people thought that everyone did the right thing by people with disabilities. I knew some weren’t really fully aware of the reality. Over the last few days, in talking to different people, I’m discovering that some people know a lot less than I thought. Things people really need to know. One great reason is, your loved ones don’t really want to “bother” you so I will for them because bothering people is one of my specialties 😂

I truly understand though. I’m the same way with people I know. I normally wouldn’t tell anyone about half of these things so some of the stories I tell might be a shock to people I know too. Even though I hate “complaining”, I feel that they are things people should be aware of so they can watch out for others.
I know when my loved ones were suffering and didn’t come to me, a lot of my sadness came from the fact that they suffered in silence when I would’ve happily fixed it for them immediately. The fact that they didn’t want to “bother” me is awful to know 😢

Some people think that the little “privileges” that come with a disability are something to actually be jealous of! Can you imagine?! To those people I say, wanna trade? I will gladly give up my seat to you with these “privileges” you’re so fond of in exchange for everything you can do that I can not. I miss those things EVERY DAY and no amount of “privileges” will ever make up for that!

Some of the stories I tell are very personal. I’m a private person but I feel strongly that people should be aware of these things for the sake of their loved ones. So I’ll be the canary that goes in the mine first 😂 I’ll take the bullet. Those who haven’t lived it can empathize immensely but they don’t truly know.

These problems are so real and most days you feel like you’re drowning in quicksand. So when someone lets a disabled person cut a line or something else, please know that we don’t view it as the “privilege” you do. We view it as – finally a random break in a day filled with more bad things than others experience in months or more.

Life is very much about perspectives and making every effort to see things through other people’s eyes. The issues I write about are particular to me but are likely similar to some of the things that others experience.

I remember doing so many things without much thought but now I constantly have to think about everything. Our brains can’t rest often and mine starts being very active around midnight so I don’t sleep a lot. Just to get across a room, I used to face obstacles as they came but now I have to map everything out in my head first. Constantly looking for ramps, curb cuts, steps, etc….. little things for others that are often big obstacles for wheelchairs. Try feeling positive when a tiny twig or pebble can best you. Things you grew up playing with are now your kryptonite.

I’m currently trying to get a body camera so you can see things from my perspective. I’m working on a story regarding issues with my building but I know it’s so much easier to understand things by seeing them. Also because my loved ones see a different version of people. It’s very different when you go out alone. I think some people see others with you and think “that’s more people to yell at me for being a jerk! Better not”
There are people who automatically are who they are regardless of who’s looking. The ones who don’t look around at everyone else before running to help. I LOVE those people. Not a church mouse, a true empathic and relentless advocate.

I’m a realist and am often accused of being heartless or cold because of it. I care and feel things very deeply. I just believe that things are the way they are for now. It’s ok to be sad but being too sad and constantly worrying about it isn’t going to help anything. I feel things so deeply that if I obsess over something too much, it starts damaging my physical health

So I constantly laugh at myself. My life is kinda like an episode of the three stooges most of the time. When I’m laughing at myself or something bad is happening to me, people will tell me things like “that’s not funny!” I say- “would you rather me cry? You’re mean” 😂😂

On the back of some wheelchairs are anti-tippers. They are there to prevent your chair from tipping backwards. A lot of things that are so very helpful can have a few drawbacks. They are much lower than your seat and closer together than your wheels so it’s harder to judge your movements, in reverse, without seeing behind you. I can definitely remove them when not needed but I’m an active person and am always doing something different an hour or two later so I’d constantly be changing them or I’ll forget and they won’t be there when I really need them. That wouldn’t be good. People who have them, get used to moving around with them. I know I rely on them for a lot. Even things that they aren’t really meant for. For example, if I need to get out of my chair and there’s heavy stuff on the back- when my chair falls back, I know my anti-tippers will stop it from falling. Otherwise I might not be able to reach my chair or lift it back up.

Funny thing just happened. The anti-tippers often hook on to things and because it’s one of the most difficult places to reach, if someone isn’t with you, it’s “a sticky wicket” 😂

It often catches on the worst things.
Little backstory– I have a bearded dragon and a leopard gecko. They both eat insects so I started breeding super worms because it’s economical. Anyway, I had just cleaned the worm bedding and stuff so there was a garbage bag filled with worm s*it and old vegetables they eat. The bedding is finer than oatmeal so it gets everywhere if you’re not careful!

So my anti-tippers grabbed this garbage bag. I heard it and froze. It’s one of those “SERIOUSLY?!” moments and time to figure stuff out. If I hadn’t heard it, that stuff would’ve been everywhere! I don’t have an aide so it would’ve taken me hours to clean. Ya know how people can tiptoe over messes? A wheelchair can’t so it often creates several other messes.

I finally got it off and immediately brought it outside because I didn’t want to do that again. It happens a lot and it’s always a big problem trying to reach back there. Of course there are things that can help but while you’re going to get it, you might be doing some damage.

Having a disability means that just about everything is harder to accomplish and usually takes at least double or more time than it does for others. So I hope everyone remembers that the little things that might be easy for some, could be huge accomplishments for others. When someone is excited about something like being able to tie their own shoes, don’t see it as insignificant and truly congratulate them because it’s a huge accomplishment for some and your congratulations means a lot. Believe me, most people would love to be achieving bigger accomplishments than a toddler but C’est la vie