Thread by @saucerspecial

Today is my 5 year anniversary on becoming disabled.

A thread.

I don't know exactly where I'm going with this. It's just my thoughts pouring out.

Short backstory, I guess?

On July 27th, 2014 I went in to have surgery on my left foot and ankle that already had major reconstructive surgery back in 2007.

Towards the end of this seven year period I was gradually losing the ability to walk/stand and needed a cane.

I was working as a cashier at CVS at the time (I was laid off from my web admin job) and needless to say, they were not happy with me using a cane and taking sick days.

They actively tried to force me to take a leave of absence and when I refused they then tried to get me fired.

They were happy to find out that I was taking 4-6 weeks off to heal and I had the surgery. I was happy to take time off since I was miserable anyway.

However, my foot and ankle were worse than the MRI showed and I needed longer to heal. A setback, but nothing major I thought.

However I could tell something was wrong early in post-op. I could not walk, healing was slow, and post-op pain was utter agony.

After several months of no answers I found out that I had a rare undiagnosed nervous system disease called Regional Sympathetic Dystrophy or #CRPS

In a nutshell, your brain interprets pain signals incorrectly and causes pure pain.

I eventually started going into shock from pain, so I was given these to manage my symptoms:

•75mcg/hr Fentanyl patches
•15mg oxycodone 4x daily
•muscle relaxers
•other neurological meds

After multiple surgeries to try spinal cord stimulation therapy, I was still mostly bedridden for almost 24hrs daily after a year.

That's when I decided to try and apply for disability.

This experience really opened my eyes to how rigged our system is against us all.

Not only was I managing my own illness, but I began a three year legal battle with Social Security.

I could not work, let alone walk or even sit up for extended periods of time. My state disability insurance ran out. My life savings was drained.

However, the worst part was putting my wife through it.

I relied on her for almost everything from cooking, cleaning, to assisting me at Dr appointments.

She became my caretaker. We were both 32 in 2014.

To this day, that is what causes me the most pain above all else.

After three years of Social Security conveniently losing my records and forcing *me* to obtain and send them in, conflicting information over the phone, and a host of other fuckery that I could spend all day talking about — I was finally approved.

Social Security is deliberately set up to discourage people from applying and to throw you off their coverage.

Long waiting periods, an inept and underfunded work force, hidden costs (records are not free), and you do not even have access to YOUR file that they have on you.

These are some of the reasons why this system forces people to return to work out of desperation to pay for the privilege of living.

You have bills and no income, how do you pay for it?

If you return to work then your likelihood of obtaining/keeping benefits is near impossible.

Your lawyer also takes out 25% of back pay up to $6000. Good luck getting approved without one.

After paying back med bills, I had nothing.

Not only that but I also was acutely aware of the new problem that I was facing:

Discrimination.

Not only do people unconsciously staring at us who happen to be in a wheelchair, but I've had the displeasure of encountering some of the stupidest and most vile members of society.

ALL have been fellow white people.

"Why are you in a wheelchair? Nothing looks wrong with you."

Not only that, but how is someone supposed to shop in a grocery store when half of all the items are out of reach?

I don't want to ask an employee to assist with my shopping, but I also cannot do so even if I wanted to.

Due to corporate greed there simply are not enough employees working on the floor from hours being cut.

Even if I have a chance encounter with one in the wild, it's very clear that almost everyone goes out of their way to avoid me.

This also applies to other people in public.

I assume it's from people not knowing how to deal with someone with a disability so they just avoid it altogether.

It's very easy.

Ignore the wheelchair and treat us like you would anyone else. You are not in the way. If we are, just excuse yourself and walk by. We'll move.

Unless you're a curious child, I highly advise against asking questions about my disability.

I don't know you and you don't know me. I know you likely mean well, but I do not owe you an explanation and I've had too many bad encounters.

Please don't be offended if I refuse.

Ultimately, I'm not very optimistic that we'll ever break free of discrimination in society.

I think it's something that will always linger because we as a species evolved to be good at identifying patterns and what we perceive to be different amongst us for survival.

I think some people simply do not know how to process "different" and it therefore invokes strong emotions like confusion, fear, anger, etc.

If you are not nurtured at a young age to help you understand your emotions then your likelihood of doing so as an adult is not great.

I'm not saying it's impossible, but how were raised as kids affects us as adults.

As we know, if you are brought up in a tribalistic (racist) environment then this will likely inflame those primal emotions into bigotry or worse.

I can't imagine what a disabled PoC goes through.

If you have kids, nieces/nephews, etc talk to them about ppl w/ disabilities.

If you see us in public and they ask you a question, that's great. Ask them how it made them feel.

If they want to ask us something that's fine. Just find out what it is and preferably ask permission.

I don't think things like bigotry, violence, and so on will ever disappear from society completely. Our frontal lobes are too small and our pituitary glands are too large from evolution.

We can, however, certainly minimize it though it will take quite a long time I fear.

To me, it says a lot about our society when we're more willing to spend more money on say blockbuster films than we are to provide housing or feed each other.

When we're faced with imminent extinction, we are more concerned with trivial matters and brush it under the rug.

I'm speaking hypothetically here, but if there is life elsewhere in the universe, then we are on the fast track to becoming another statistic.

One of the countless species amongst the vast expanse of space that has failed due to self-annihilation.

We have the means to stop it. We have the resources, technology, and the work force.

What our civilization does not have as a whole is the willingness to commit. 10% of the Sahara can power our planet.

We have been lulled to sleep by a false sense of security by those in power.

What we do in the next few years will dictate the fate of our planet.

Do we pray to one of the 1000's of deities for help?

Do we stay on our phones and tweet about it?

Or do we take it back from the global ruling class who tosses us a few crumbs and then we rewrite the rules?

Anyway, if you took the time out of your day to read this random thread then I thank you for your time.

I know it's long and rambling. I didn't have a plan. I have a lot of time for reflection and I just felt like writing something for my 5th year.

Have a great day. 🖖

Fin

PS — Cherish everyday and take absolutely nothing for granted for you do not know what tomorrow will bring.

We do not miss the water until the well goes dry.