It Should Be Expected, But It’s Not

I apologize for my long delay and neglect of this blog. College started up again. Physical therapy started up again. And to top it off, playing the ‘oh shit new doctor’ game came up again. In fact, as I write this, I’m still dealing with the after effects of my first ever phentolamine injection. I’m still uncertain about this new doctor as I’ve learned that it can take a couple appointments before you found out your doctor’s an asshole.

Case in point: One of the most common treatments for RSD/CRPS are Lumbar Sympathetic Blocks (for people whose RSD is in the lower body). I had four injections. After the third time with not even the slightest bit of change, the doctor told me that if the next one didn’t work I’d just have to get over it and walk on my RSD affected foot and ankle. He also stopped treating me once I turned down the spinal cord stimulator.

Believe me, this is leading to a point. First off, I dread being treated for my RSD. Shocking right? It’s not that I particularly enjoy having this chronic pain thing, but I cannot stand side effects of medications. The problem with side effects is that you don’t know how long they’re going to last, how severe they’re going to be, or how well you’ll deal with them. Throw in things like work or school, and the fact that you HAVE to be there, and you can quickly end up with a problem.

I recently had to miss class due to the fact that I had an appointment to receive a phentolamine infusion. My doctor wants to see if my pain is Sympathetically Maintained Pain or Sympathetically Independent Pain. If it was one of them (I don’t remember which), then the reaction would be that the injection would numb my RSD-affected leg. It certainly didn’t. Instead, the injection made my leg very heavy and hard to move, oh and don’t forget the pain was still there! And because it wasn’t enough to just have even more difficulty gimping around, I also ended up with some very fun side effects: dizziness, light-headedness, and high heart rate whenever I stood up. As I write this, I’m actually leaning back, not sitting up, and trying to keep these words from moving too funny on the screen. I decided that it was definitely not safe for me to drive, and I have no ride to get anywhere today. This means I am missing class again today.

I debated for a couple hours about whether I should just “suck it up” and drive to class or if I should just not e-mail my professors and basically have a skip day. I went from the living room couch to into my room to find my books for class. That small exertion transformed what seemed to be a somewhat ‘slightly unsafe’ dizziness to a ‘holy shit unsafe’ dizziness, and I quickly realized that there would be no getting into class on my own today.

As I debated about whether to e-mail my professors or not, I remembered that disabled students don’t get skip days. Still, I was not looking forward to e-mail my professors again to inform them that once again I would be missing class. As I am registered with my school’s disability office, I do have a “flexible attendance” accommodation that professors are required to give me as required by law. But as I learned last year, not all professors care about the law. They’d rather decide that their inaccessible class is far too difficult for them to change. So every time I ask for accommodations I’m struck by a fear that I will once again be told that it’s ‘too bad they can’t help me’ or that ‘if they can do it, so can I.’ Honestly, I’d rather be seen as a lazy student who just doesn’t want to come to class than as a student who is using their disability as an excuse. I don’t want to be THAT person, THAT person that seemingly every person who denies accommodations seems to know. I really wonder who THAT person is.

Eventually I remember that my professors have actually been quite terrific this semester. They barely even glanced at my accommodation letters, and had taken my word from the beginning. Two of the professors said that they didn’t even need the letter. So I wrote my e-mails to the two professors that I have class with today. I explain that it is unsafe for me to drive as I’m still experiencing reactions to the medication and I ask what I can do to make up for it. And I apologize for missing class again because I really did want to go. I need out of the house like you wouldn’t believe, but there’s no way for me to get anywhere.

Now, here’s what shouldn’t happen.

I shouldn’t want to cry out of happiness because I get an e-mail back telling me “just to feel better” and “not to worry about it” and “sorry you’re going through all of this”.

I shouldn’t be overcome with relief for being treated like a human being.

It should be expected.

But right now? I don’t want to focus on the assholes who can’t get their heads out of their asses for two seconds to realize that people need different things. I want to focus on the people who do things right. The people who do things right? They make our days better.

Doing it right:

-When professors actually allow you to utilize your accommodations
-When door openers work and the doors are also wide enough
-When ramps are cleared of snow and ice and have railings on both sides
-When there’s enough disabled parking for all the disabled people to use
-When people introduce themselves and ask you your name instead of ‘what’s wrong with you’
-When people offer help and relax if you say no
-When people listen to your limitations and either help you see a way around them or listen to the way around them that you have
-When doctors listen to you and don’t blow you off
-When physical therapists listen to you and keep you from overdoing things
-When there’s an accessible bathroom on the floor you’re on
-When elevators work
-When buildings and the rooms inside are accessible
-When people listen to what you need

This list is basically a ‘how to treat disabled people like human beings that also interact with the world’ guide. The one thing I hate about it is that there shouldn’t be a list. When these things happen, I still shouldn’t be overcome with joy. I shouldn’t want to thank buildings and employees and professors who are accommodating and accessible. I shouldn’t want to hug my physical therapist when I find out that she is more than okay with my using a wheelchair. I shouldn’t want to hug a random employee at the liquor store for having at least ten disabled parking space, sliding doors, and the flattest floor and entrance I’ve ever seen.

It. Should. Be. Expected.

But to those people who do everything right? It’s more than a breath of fresh air. It makes us feel human again. It reminds us that not only are we still alive, that we deserve to live in this world as well. Unfortunately, there are no words to adequately express how much it can mean to us when someone does everything right, when we can eat out, go shopping, and just hang out in general. A thank you just doesn’t seem to cover it. But just in case it does, thank you.

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