Disability Is Expensive

Not that that needed to be said, but it is really, painfully pricey being disabled. And I'm not just talking about doctor's and hospital bills; ordinary, everyday things come with an additional expense - a cripple tax, if you will. Dispiriting and tear-inducing for me, downright prohibitive for most. It sucks.


What brought this post on was the need to adapt my ALREADY adapted minivan. I call my minivan Tom, but that's beside the point. Tom's got a handy dandy ramp, but now that my stupid right leg is essentially useless I decided to get hand controls put in as well.


I was trained to use hand controls before Christmas by a lovely guy, took my van in last week for the modifications and... and... it's just been a cascade of humiliation and cash hemorrhaging ever since. As if being (relatively) young and needing a hand control to drive your ramp van wasn't bad enough, there's been much discussion amongst the gimpy gear hawkers about the best model of hand control for me. The one we agreed on, that I was measured for, won't fit in Tom. There are other options, but there won't be any room for me to shimmy from my scooter to the seat. Again, I was measured for all of this so it should have been sorted out.


So after much back and forth and much of being called "dear" by the receptionist at the cripple emporium, it's been decided that, along with all the other modifications made to Tom, I need a "transfer seat." And it will cost an extra $3000 for it.


I hate this.

Good Gumball

So the Gumball is staying a, er, Gumball. Nine months since my Meningioma diagnosis and the tumor has decided to maintain its size and to continue to leave the surrounding brain tissue alone - meaning no swelling/edema. Great news!

An Homage To My Scooter

Meet Gumball

As if having Multiple Sclerosis wasn't awesome enough, I recently found out I have a brain tumor. After years of waxing hypochondriacally I have an honest to goodness tumor contained within my skull. Fuck.

The good news is that it's small, easy to get to and *most likely* benign.

I call it Gumball. Gumball's most likely a meningioma( a tumor in the lining of my brain) and **touch serious amount of wood** is content remaining the size of, er, a gumball right now. As long as he keeps that up there will be no need to go in and retrieve him.

I'm Younger Than My Scooter Makes Me Look

I took The Little Boy to the cafe today and a man who is old enough to be my grandfather called me ma'am. A group of elderly gentlemen was enjoying their morning coffee and chat, and they were blocking much of the sidewalk.

No biggie. I smiled and was about to chirp a cheerful "excuse me," when one of them asked, 'are we in your way, ma'am?'

I can't remember what happened next. I hope I was still smiling and that I said "thank you," but all I was thinking when I rolled up to meet my dad and baby was "fucking scooter, making me look like an old lady! Ma'am. Ma'am!? It's bad enough when I get ma'am'd by a teenage busboy."

Grumble.

The funny thing is that, as long as my gray's are nice and dyed, I actually look much younger than my 39 years.

Everyday Humiliations

I picked The Boy up at school the other day, just like I've done hundreds of other times. As we were leaving I heard the pounding of small feet approaching so I closed the gate behind me. I turned as we were getting in the car and saw a boy - the presumed source of the noise - and his mom as they were leaving.

I smiled and said, "Oh sorry. Didn't mean to close the gate on you, it's just that I heard little feet running up behind me."

The mom looked at me and said, as though I was a child myself, "Well we usually DO like to keep the gate closed so good job." Then she pursed her lips, crinkled her nose and gave me a fake, vacant smile as she carried on through the parking lot with her kid.

As I strapped The Boy into his car seat I could feel my neck and ear getting hot and my eyes tingling, a sign that I didn't know whether I was mad or sad. The short drive home, when I was replaying the whole 30 second exchange over and over in my head, led me to believe that it was definitely anger I was feeling.

I'm over it now.

Then this morning, The Boy's first ever last day of school, I went to leave after dropping him off and my sweet boy went to hold the gate open for me. There was a crowd of parents and kids waiting to get in so he held the gate open for them while I waited beside him, smiling and saying hi. Then I notice a perfectly able bodied cow stepping out of a black Lexus SUV, one without a disabled placard or plates, walk through the gate with her spawn and look down at me like I was something stuck to her shoe.

The thing is this wench ALWAYS parks in the disabled spot, probably because it's 'just for a sec' while she drops her kid off. Well guess what, lady, EVERYONE is dropping their kid/s off. You're not special!

You know who is special? Me! The cripple whose very existence seems to bother you. So stay the hell out of the handicap spots!

Heat is My Cryptonite and Summer is My Crypton

This morning I took The Boy to school then took The Little Boy out to enjoy a coffee with his grandpa and friend of ours, and it was soooooo hot. My phone says it's supposed to get up to almost 100 degrees today, and my numb right pinky concurs.

It's mid-May and I can already feel my myelin melting. Thank God for air conditioning, but it's not like staying in my house for the next four months is really an option.

Blerg. I really hate Summer.