Construction

It's important for me to remember that when I feel like, progress-wise, I am hitting a brick wall, I can choose. I'm the one that built it, so I can take it down. I can build something else. Maybe a wall of shaving cream, or foam? Sometimes I want to use the eliptical for a few more minutes, but my body is giving out. Sometimes I am grateful I was able to use the eliptical at all, other times, I do have that yearning, that comparison, that feeling of awareness of what I won't have, that I'm different. Which makes no sense, because the "awareness" lurks vaguely. As in, I don't even know what I won't have, or what I'm missing. Or maybe it's because admitting these feelings embarasses me. I judge myself for them. But I don't have to. I have choices. It's not a slide into the abyss unless I build one.

I don't want to be perfect

I don't want to be perfect

I'm accepting of who I am 

and of who others are

If someone with a disability tells their story

they aren't seeking validation from an "abled"

they are telling you how it is

not merely their perception

their reality of what they live with every day

You don't need to investigate whether what I said was true

You don't need to ask my mom

Yes, I get that I am sensitive

I have examined a situation from every possible angle

and even if you had a bad day, which I am not allowed to have

because it's not inspirational to do so, or I feel it's negative 

what you said or did was probably uncalled for

In this world having a disability is a lot of work

Educating people, making them comfortable, overcoming structural obstacles and swallowing pain 

Yet others can have a bad day and be impatient and I'm supposed to nod.

I shake my head at that

my Life-long Truth

What if I shouted out loud “People with disabilities have different issues.” Would people believe me? Would people believe that instead of worrying over the price of gas, and car repairs, and car insurance we worry about getting picked up so we are not late to our medical appointments? And then waiting for hours to be brought home? Nobody would want to do that. Can I negate the assumption that there’s always someone around willing to help?   Usually, someone thinks that someone else would help, who thought someone else would help, who thought that a person with a disability should have someone with them at all times. That’s not realistic. 

Above all, Can we lift the bar of expectations? 

If someone shows a peer with special needs kindness or is their friend, is that news? Is that heartwarming? As a society we need to examine the fact it is not expected to go out of our way for someone. Or even examine the definition of “going out of ones way.” I’m not a difficult person to help, to like, to work for. I ask for little and give much. I try to, anyway. I have no control, technically, over how I’m viewed. 

And, if we dare lose patience with an agency, with an individual, if we dare demonstrate actual human emotion, outside of patient, acceptance,a person with a disability is chastised for having an “attitude” or “Not being understanding” Oh. The. Explaining. The justification. The “missing the. entire. point.” The point being that people with disabilities are all aiming to make a couple friends, a couple bucks, a life. Trying to build an authentic life at the same time well meaning people alert me to facts like “I am so lucky to be able to do as much as I can”

Oh, am I? Well, I guess I’ll just scrap these feelings of inadequacy, we’ll put them over here, under the mountain of paperwork I fill out every six months to qualify for the benefits I need to lift my life to a higher level and at the same time put me in poverty.

   For a while, I could push back against the brick wall of beaureaucracy and choose positivity. For a while, I could stay focused and take the good out of my job. And then, I couldn’t. My will to do so flattened, as the brickwall crumbled and the remnants laid on top of me. As a person with a disability, I wasn’t part of the unemployment statistic. I wasn’t restricted to  a sheltered workshop; I earned a high hourly wage with time and a half on Sundays. What could go wrong? Couldn’t I muster up some courage and stick it out?

Years ago, with a more supportive store, I could have.

Years ago, with a younger body, I could have.

I could have if I ignored the job’s effect on my mental health.

When I finally decided to leave, people were jealous.

I didn’t get to choose my body.

Or create the able-ist thought processes that say I should continually struggle to be “normal”. 

Unless I talked about being promoted. Then of course, I wouldn’t be fast enough because I had a disability after all.

But I could choose myself.

How it feels

How does it feel to leave your job you have had half your life?
How does it feel to know your limit, and in your bones feel that matters won't improve, and that you have to go?
It feels wonderful to not have to struggle against myself anymore
I don't have to psych myself up for work. I have more energy for other things, like exercise and seeing family.
 I knew that on the outside, since I didn't fit the statistics of people with disabilities, I worked, I made a good hourly wage, that it seemed I had it all and people admired me. Then suddenly, something within me broke. I was tired of being tired, of giving all I had without getting much in return.

     For a while, there was a period of adjustment. I felt as if all of my feelings and actions were in slow motion, like I was stuck to the couch. Unsatisfied after an appointment, I joined a gym. At first, I didn't like it. Getting used to the machines was hard work and learning how to ask for help was hard work. I kept going, and I could do more. Simple things that I haven't thought of in years, such as putting a shirt on without holding onto anything, or standing independently in front of the refrigerator. I started to be able to do more on the machines. I started to relate with others. I wasn't afraid of what I might find out  if I worked with my body, and even if I was, I talked about it, and suddenly I wasn't scared. I didn't compare myself to twenty years ago or twelve years ago, or maybe I did, but not in a depricating way. I started to care about myself again. I started to connect to myself, and I haven't stopped. There's a hope in the middle of my body burning bright and I have to focus on it.  A belief, an assurance that I know what I am talking about.
How does it feel to leave what you've known and dive into life?
I know that I am privileged to be able to do so.
It feels
fantastic

October 15 is my independence day

It's not about my age or the change of address
Or even changing
It's about a feeling of strength inside
and having more to give
and loving myself and
sharing myself
Sharing a quote, cat pic, or youTube video
Sharing indignation over injustice or inconvenience
"Oh man!"
"WTF?"
And finally knowing why I was given
This brain
This body
This heart

Life

Remembering the last night at home
scared of failure
Unsure of living with a roommate
Huge changes
And now I sit alone in my apartment
Huge changes
Because her room is empty
The family has collected her belongings
We attended services and said our Goodbyes
My mind flashes to when I told her that I loved her
and she said she didn't know but that she loved me too
pure joy
As she faded away, my dedication level was elite.
Staying up, asking questions, checking in.
Fearing, dreading, hoping
Love all around between myself and her carers
Enlisting family support
And praying, praying, praying
Please God let her go here
Here where we chatted and had snacks
Here when I texted when she couldn't hear what I was saying
Where she developed her own life
Not in a nursing home where this happens every day
and she might be alone in a room with no love
That can't happen
And on that horrible beautiful morning,
She departed and set herself free
And I exhaled with relief
Feeling as if I lived a life in a month
A life, actually in five days
But knowing the strength that she gave me
Will help me conquer the world

A year later

 A year later, I don't know if I could be the spokesperson for where I live.
But I know that I speak up more for myself
A year later, I still don't know my life's path
But I am more accepting of that now
A year later, I haven't changed at all in some ways
Because what I needed to change the most was how I treated myself
A year later, I still give to others
Even more than ever, still as automatic as my huge grin
A year later, I realize it's not about the place or situation or life being perfect
Or even learning lessons from imperfections
Sometimes life is hard, and that's just because it is
Not because I didn't try
or because I need to learn a life lesson
But because sometimes life stinks
And the only way to react is to hold your nose
and keep going