Your Handicapped Perspective of the Day

Yesterday I went to the store to buy my fiance a card and roses; partly because it was sweet just to do it, and partly because I needed to offer an apology for the events that took place the night before.

At this point you might say, “What did you do?” It does not matter, it’s not the point of this post; but just to satisfy your curiosity I got too drunk and ended up throwing up on the carpet.

I’m one of those people in a wheelchair who actually goes outside and does shit. Like I’m known do to. I went to the store and after picking out what I wanted to buy I realized that I left my wallet at home, so I put the items on hold to go home and get my wallet.

Which more or less means that I already put my wheelchair in my car, but now I got to transfer it two more times then I wanted to. So at this point I would have to put in/take out my wheelchair a total of six times.

Can I do it? Yes? I don’t mind doing it. The only reason I don’t want to is because it adds about 20 minutes to my trip that was not supposed to take that long in the first place.

It was a nice day yesterday in southeast Nebraska. Sunny and warm, but not that humid; kind of reminded me of Washington Summer’s in a weird way. When I came home to get my wallet I had the task of getting out of my driver seat, using the side of the car to help me walk to the trunk, taking my wheelchair out and assembling it, going up the ramp into my house; and by the time I got my wallet I had to do all of those steps in the reverse order.

I get home, I got to the back of my car, took out and assembled my chair. Just as I sat in my chair and wheeled myself over to the ramp that takes me to the front door of my house and I hear, “Do you need any help sir,” to which I said, “No.”

This guy sounded like he was offended that I said, “No.” Look man, I’m doing something that I do many times a day. If I had that much trouble getting into my own house don’t you think I would live somewhere else?

I’m very active, as far as someone in a manual wheelchair is considered. I hear, “Do you need any help,” more times in a week than most people do in a year.

I understand that you want to be nice, as part of me appreciates that you want to be nice. The other part of me however hears that so much that it gets annoying and makes me think that you’re someone who assumes that those of us in wheelchairs are not independent and clearly can’t do anything by ourself’s.

I do this many times a day, I don’t need your help; and for you to assume that I need help with one of the simplest tasks that I do on a daily basis just makes me think that you’re an asshole who just wants to feel better.

Don’t you think if I needed help I’d be like, “Hey, can you help me please,” versus just getting unprovoked help that might not be needed in the first place?

That’s like me being somewhere and asking you if you need help walking. The first time it happens you might just think they’re weird for asking such an odd question, in my case you might even expect it; but being asked that multiple times a day is rather annoying.

If I needed help I’d ask. I much rather ask then having people assume.

I Feel Like Writing!

I’m the type of person who does not care if my friends use my wheelchair if I’m not.

Back in high school I was in yearbook production, I could also walk; it was not able to walk like most people think of walking, but nonetheless I was able to get myself from point A to B and back again without using my wheelchair.

One day I’m sitting at the computer using Photoshop to design one of the junior pages. I was not in my wheelchair, I was in the nice “school version” of an office chair because I deemed it more comfortable.

My friend Lance had to go interview someone, about something, and said, “Hey bro, can I use your pimp ride?” Which I didn’t care, “Yea man, whatever, just don’t be trying to go down a set of stairs or whatever.”

About 30 minutes later he came back to class and said, “Man, how do you guys do this, my arms hurt.”

About two weeks after that I was staying after school to work on the yearbook and Lance was with me, a few other students, and the teacher. School was pretty empty at this point, and once again I was not sitting in my wheelchair. When I had to go to the bathroom I decided I would just walk there.

For some reason the bathrooms are locked after school, which I didn’t know at the time; by the time I walked 50 feet in one direction, 150 feet in the other direction, and another 1,000 feet that same direction to end up going to the bathroom to just walk 1,150 feet back to class I opened the door to say, “Man, how do you guys walk, my legs hurt.”

And this leads into my topic.

My mom, who didn’t show signs of our disability until 1973 or 1974; at the age of 18, just got a manual wheelchair. Before that she was using a cane or one of those walkers with wheels on them. She was still able to walk, and still is; but as time goes on it is slowly deteriorating and you can tell she is having a harder time doing so.

Me on the other hand didn’t walk until I was 3 and pretty much had a wheelchair my whole life, 33 years later I’m on my fifth wheelchair and due to how active I am I see myself needing another one sometime around the age of 40.

I was able to walk in the past, but it was…different. I can still walk I suppose, but I need assistance with every step. Back when I was able to run, jump, and skip I still had a wheelchair even though I rarely used it. Around the age of 16 when I entered high school I more or less started using my wheelchair when I was away from home.

I had many years since then to figure out shit that most people don’t know how to do. Wheelie’s, opening doors, getting into my car, and toning my muscles to take me places.

So now my mom is asking me, “How do you open doors?” I can tell her, “You go up to the door until you can’t go any further, then put one hand on the door handle and keep your other hand on the wheel, roll backwards as fast as you car and swing the door open. Then take that arm that you were holding the door open with and use it to catch the door as is closes, use the door and your one arm to move though the door.” Or, “Go up to the door, crack it open, and slowly run into it until it opens to the point that allows you to push yourself though the door.”

But, I don’t know how much she will understand that. She has never done it before. It’s kinda like explaining how to swim when you only know how to stand in a pool.

And she doesn’t have the same arm tone that I do. I can go 500 yards on a sidewalk and not be tired, but I don’t know if she can; and hills, come on man, I can get up a 30 degree incline and understand the physics of weight changes and whatnot. I can even do the same thing on grass based on the fact that I know how to do a wheelie.

But she does not. Part of me wants to call her and say, “You need to go to the mall and just cruise, get your arm strength up.” Then going up a hill, I don’t know if she’ll be able to navigate that without falling backwards because she doesn’t know any better.

Then going down a hill, seems easy, but that too requires knowledge of how to stop, how to steer your chair at a fast rate of speed, and how to control each wheel if you lose traction. The breaks won’t do shit in that case, they might burn your hands and cause you to crash into whatever you’re not steering away from.

Like, I’m not there. I can’t take her to the mall and give her wheelchair lessons. My dad is a motherfucking genius when it comes to physics, but I don’t know how much he can help either. I’m 1,600 miles away I just can’t be like, “Do this,” and even when I do move to Oregon I’ll still be about 200 miles away.

Last night I told her, “Go to Youtube, that’s a good resource for almost anything that you want to know.”

I was on the phone with her when she said, “Boy, carpet is so much harder then wood.” Part of me felt good that she can finally grasp that understanding, and part of me was like “Well no shit.”

Moving to Oregon!!!

(I’m writing this a few days after I posted this. There are a lot of grammar, spelling or incorrect words in this post; I do not feel like editing it right now…so just know, if you don’t, that I’m not that stupid, I just suck at editing my self before I hit post)

A few days ago I remembered doing something and a few minutes later I attempted to make a funny post about said memory. At the beginning of my relationship with my now fiance I took her on a last minute date to Mt. Rainier. While that was running thought my head I had a thought that hopefully would seem funny to those outside of The Midwest, or Nebraska.

I more or less posted:

Hey, Shannon remember that time I took you on a last minute date/adventure to Mt. Rainier? It was fun wasn’t it? Mr. Fox hanging out next to the car, the bathrooms were berried under snow (in the summer) and then after we got home I realized I could of got in for free.

We had lunch in the paradise parking lot and the entire time there was a gray fox sitting right next to my car starring at us. We didn’t feed it, but we wanted to; he or she was kinda cute just sitting ten feet away from my front door watching us eat in a non-violent manner.

And there is the issue that I can get into a national park for free based on the fact that I’m disabled.

What am I supposed to do in this state? Take you somewhere and be like, “This hill is the largest hill in this state and its peak is 20 feet high.” Or take you to a body of water and be like, “Hey look, it’s a body of water, I’m pretty sure its deepest point is less than 100 feet; and look, you can even see land on every side”.

So that was my attempt to make fun of my own state, the state I was born in but was away for for 15 years.

On another topic I went to go get gas today and had another thought which I will talk about more below, but based on that I had the idea to write top top reasons I’m excited to move to Oregon.

These are not in any particular order, but I tried to put the most important shit upfront, however they are all important to me and towards to end of the list I found myself asking if this was more important then that.

1. I’ll be closer to my kid

As some of you might know; my kid was born in 2003, around the summer of 2005 I was booted out of the house and moved back in with my parents. After that I got to see my kid every other weekend.

Shortly after I moved out, like right after…and I have a post called Restless Night if you care to read more about that.

Now…if you read that post you might already know. She spent no time jumping from boy to boy. Nine mouths later they were married. He was in the military; and if you know anything about Washington State…Ft. Lewis.

Anyhow because of said marriage my son spent the last ten years, starting at the age of 3, maybe 4 moving all over the country. Then his step-father got a job in Seattle, out of the military.

So now my kid is back in the state where he was born and when I move to the northern edge of Oregon I’ll be a 21 hour drive closer. So I’m looking forward to that, my son says he is too. We both suck at coming up with things to say, so our phone conversations are very little. Not because I don’t care about my kid, but due to awkward silence. And if I ask him questions or say something I still get “Okay,” “No,” “Yea,” “Cool,” so on and so forth, like where do I go from there

But being with him in person is different, he will talk your ear off…which I did at that age too.

I’m just hoping that his mom will let him come live me Shannon and I for 30 days during his summer break.

2. I’ll be closer to my friends.

This…I might not need to explain this either. If you dig into my blog there is plenty of information to tell you what I’m about to summarize.

When I was a kid in Nebraska, I was picked on…more so than most kids, yes we were kids, yes that what kids do…but 30 people every day. Then I moved to Washington State and that pretty much stopped.

I became more popular that I could have ever imagined. My soon to be best man at my wedding…I’ve known him since 1998, the year I moved there; granted he only hung out with me because he thought my sister was hot, but after he got to know me he stuck to me like adhesive.

My other friend, he sucks at giving speeches; he will not be making any speeches at my wedding. I’ve known him since 1998 too.

My friends in Washington…what else can I say.

3.  I’ll be closer to my family

Now, my dad has five sisters and had 2 brothers, 1 remaining; regardless of that it has spawned a huge family who mostly reside in Nebraska, a few in Iowa. But I don’t think of them as…people who are close to me, mainly due to religious and political difference which I might mention later on it this post.

I moved back to Nebraska a year after my father moved back to Nebraska. He offered me a job in Nebraska a year prior. If you know anything about my blog, you know my stance on how difficult it is for people with disabilities to find a job.

As much as I didn’t want to leave the state of Washington, I saw it as a foot in the door to the engineering field. In which I have two college degrees that focus of the line of work. After talking to my now fiance, she moved to Nebraska with me in the same hopes that I would walk into that door.

Which never happened. At that time the government had a shut down of manufacturing, and the company my dad worked for got all to most of its contracts though the U.S. government. And his boss, whenever you mentioned something to him that he didn’t want to talk about he would just act like the situation was not there.

So I lived in Nebraska hoping for a job that I never got. On a positive note I found a job similar to that and was employed for 19 months until I was laid off due to a loss in customers base.

Around that time my father received a call from his old boss (they really liked my dad and were sad to see him go). After a, “You sure you don’t want your job back,” conversation on the phone; he quit his job in Nebraska based on several factors, one of them being that his boss promised to hire me but acted like I didn’t exist, and moved back to Washington to take his old job.

So being able to drive up to the Tacoma area for holidays or just because would be awesome.

This last Christmas I stayed in Nebraska, mainly because neither I nor my parents could afford to fly me out. I was sitting at a dinner table with my fiance, 3 of my dad’s sisters, my closet cousin, and a few other family members. The men were in the family room watching a Seahawks game, which was great for me; and the women were all hanging out in the kitchen talking about whatever.

As I’m sitting there talking to my Aunt Sandy and Aunt Diana I hear them say, “Oh my God Daniel, you look, act, and talk just like Billy (my dad). That makes me feel good.

There are things me and my dad disagree on, him being a republican and me being a democrat; which I’ll speak about later, but I have always been closer to my father than my mother. Mainly because my dad, as much as he doesn’t want me to fuck up, realizes that sometimes I won’t learn if I don’t. As my mom…she tries to stop me from doing anything that she deems dangerous, like you know, driving to Taco Bell or going outside when she thinks I will fall.

4.  Mountains, ocean, and trees.

Before I knew that I was going to move back to Nebraska I had a coworker, who I ate lunch with and also knew that I was from Nebraska. He would ask me some of the dumbest shit ever, which was funny as hell and stupid as fuck, but he is still a friend, not a close friend, but someone I still talk to and would hang out with.

“Do black people live in Nebraska?” May I mention that he was black. To which my smartass response was, “Do white people live in Baltimore?” which is uneducated on my part, I never been to Maryland other then a field trip in middle school. But…I think you can understand what I was trying to get at.

“Do people in Nebraska listen to anything besides country music?” Another smartass reply came from such, “I don’t know man, do people in Seattle listen to anything other than Nirvana, Alice in Chains, and Soundgarden?”

“Are there any trees in Nebraska?” This honestly made me look at him and think, “What the fuck man.” “Yes, there are.” But after being back here for about 4 years now…I can understand when you take The Evergreen State and try to compare it to Nebraska, that’s like trying to compare me to a seven foot tall NBA player. Yes, we are both human beings, but there are very distinct difference the two.

I don’t know if I need to say anymore. Oregon has mountains, Nebraska does not. Oregon in on a the coast of the Pacific Ocean, Nebraska is not anywhere close to either ocean. And trees…Oregon is a giant ass forest with cities built in the middle, I’m so used to the Pacific Northwest type forest that when you take me to a plot of land in Nebraska and say, “This is a forest,” I can’t help but laugh at you.

5.  Different climate

Keep in mind when I reference Oregon I’m talking about the low land portion of Portland, not the eastern side or up in the mountains.

So in Nebraska, there are actually four seasons; Winter, Spring, Summer, and Fall. In western Oregon there are only two; Rain and Summer.

In Nebraska it easier to distinguish the four season than it is in Oregon.

As far as Nebraska goes the winters average a temperature from 10-25, and it can get as low as -10. It’s common to see 6 to 12 inches of snow more then two times in a three month period. Spring starts to get warmer, all the trees that have no leaves start to grow leave again, the grass starts to turn back into a green from a brown. The average temperature can be anywhere for 30 to 70, and I love When it’s hot in the spring, reminds me of Washington summers.

Summer here, the average temperature is anywhere for 80-110, and there is no ocean, so there is so much humidity it the air that it feels like you’re in a 90 degree sauna with a 120 degree heat lamp that you can’t escape from. Then you get into the fall which is more or less the reverse of spring. Leaves die, your grass turns brown, its starting to get colder outside.

Oregon has four seasons too, but they are “closer together” than what you would experience in the Midwest. Winter might be anywhere from 15-30 degrees, but it’s raining. Spring might be anywhere form 40-70, and it might be raining then too. Summer is the best, and I think I’ve explained that already, it might rain; but for those 90 days, I love that, when it’s not raining the weather is fantastic. Then you get back into the fall which again is the same as spring, for the most part.

And let me say one thing about the rain: The rain in Oregon ain’t that bad. People associate it with Seattle, but it ain’t as bad as you might think. When someone says,” Oh yea, it will start raining on Monday and won’t stop until Saturday.” That sounds bad, but it’s not. Rain here is like standing under high pressure shower head for an hour compared to standing under a low pressure sprinkler for a week.

Rain might sprinkle on us for a week, but it dumps on you for an hour.

And humidity…come on man. If you’re in the Midwest picture a 90 degree day in the spring, take out the gusts of wind you get and then imagine that in August.

6.  Jack in the Box.

Some people hate the food at Jack in the Box, which I don’t understand, but whatever, people are allowed to feel anyway they want.

But…Breakfast at 6pm or dinner at 5am, need I say more? And a large menu with a lot of options.

Nebraska does not have a Jack in the Box, and it makes me sad. I have to drive 110 miles over to Kansas City, Kansas just to have Jack in the Box. Every time I’m up in that area one of the things I make a point to do, which might be more than once, is eat at Jack in the Box.

7.  Weed is legal

I could talk for hours about the legalization of marijuana, but I won’t…if you agree with me you know everything I’m going to say; and if you don’t you won’t care anyways. Both times in college I has to take an English class, both of them had the topic of a persuasive essay either 5,000 words or a 15 minute speech, both of those time I wrote about exactly that: The legalization of Marijuana.

Now, I’ve been away for so long that I’m not keeping up with the laws in said state. And when I left I didn’t live in Oregon anyhow.

Do you know how good it feels to say, “I was one of the many who voted to legalize relational marijuana in Washington,” when you live in one of the few states that does not even allow medicinal marijuana.

Say what you what, but Washington as well as Colorado showed a decease in violence, and traffic fatalities with a large, and I mean large, increase in state revenue that goes back to the states infrastructure.

And I’m pretty sure Oregon, all all the other state that passed it since 2012 will follow suit.

8.  I don’t have to pump my gas.

So my fiance’s my was out here to visit and while my fiance was at work I was driving around town from place to place to do some stuff with her mom, who is 50 something… I’m guessing, when we pulled up to a gas pump to get gas I asked, “Do you mind pumping the gas?” And She said, “I don’t know how to.”

After thinking about it for a few seconds it made sense to me, and I’m not trying to say she is less of a person because of it.

Do you know how many jobs are created in Oregon because of that? It’s against the law to pump your own gas. So that’s cool, but good luck getting gas at two in the morning. You might just have to cross the river and go to Vancouver, WA if you need gas at 2am.

As far as I go, I just got a new car, a car with the gas tank on the passenger side. And as time goes on its getting more difficult for me to walk. Yea, I know, there is a disabled button on gas pumps, but not many people use them and that being said the employees inside of the store are not used to it; every time I pushed it, nothing happened.

When I had a car with the gas pump on the drivers side, it was much easier for me to pump my own gas, but now I got to add the task of walking around the vehicle just to do it, then I got to walk back afterwards.

It’ll just be great to roll up to a gas station, I might have to wait in line, but I don’t have to get out of my car; I can either say “Fill it up,” or “Twenty bucks,” and it will be done for me.

9.  More democratic.

A few days ago I caught myself thinking, “Do republicans view Washington and Oregon the same way democrats view Texas?”

On a separate occasion I went to the movies with my fiance and one of the characters said, something along the lines of, “This is a small village, people don’t have that many issues do deal with.” And in the middle of the movie that got me to thinking about how smaller towns tend to be republican while larger ones tend to be more democratic.

And yes, there are republicans in Oregon; there are democrats in Nebraska. Lincoln and Omaha are the two largest cities in Nebraska, and that being said there are more democrats and more moderate republicans who understand that there are a lot of people here that deserve the same rights as everyone else, they all have different religions and backgrounds.

But you get outside of Lincoln or Omaha into smaller towns you tend to find people who think it’s okay to force people to be a certain religion, it’s okay to force kids to say the Pledge of Allegiance at school, it’s okay to deny a couple the right to marriage because of a religion that is not supposed to hold any legality and that everyone who doesn’t speak English should fucking get the fuck out; all of these make you think, “What the fuck is your problem.”

Now Oregon, specifically the Portland area is the same as Western Washington; as far as cities go. A bunch of cities all jam packed next to one another with very large and very diverse groups of people. And the republicans there, are surprisingly moderate. They might consider themselves to be financially republican but socially democratic.

I’ve heard a quote from a comedy special on Netflix where Trevor Noah said something along the lines of, “There are so many people in this world, once you start to travel from state to state, even country to country you start to understand how insignificant you are.”

I don’t know about you but I’d rather live somewhere where people allow you to live your life how you deem fit as long as you’re not being violent versus someone who is close minded and thinks everyone should be just like him or her.

10. Less religious.

I don’t know what I can say about this. I’d rather live somewhere where people don’t think your a violent people who kills children and drinks their blood just because you’re an Atheist.

Due to previous research I can tell you that – these stats might have changed – Mississippi is 7% Atheist, Nebraska is 14%, while Oregon and Washington are up in the 24 to 25% range.

I don’t care what you believe, you can believe in a giant lumberjack who has a blue Ox for all I care, but the moment that you try to effect my life, the education in schools, or the freedom that is in the first amendment, that is when I have a problem.

11.  Ikea, Fred Meyer, and others.

Fred Meyer is great, I don’t really know what to say; I miss it. It’s like going to a smaller bet better version of Walmart.

12.  More handicapped accessibility.

People here think that shit is handicapped accessible; but it’s not. Yea sure, I can get from here to there, but it’s not as easy. I mean like I can get around in a wheelchair, but it’s like the Midwest has this idea of…

“If we have to legally do it, I guess we will; but that’s as far as it goes. If you can get in and out of the store we fulfilled our legal responsibility. If you can get out of the door on the side of the building because a fire is blocking the door that you can enter, that ain’t our fault. And well if you cant get down to the street via a curb-cut, well that’s not our fault either; go over there and then come back this way. We don’t care about how easy it is, all we need to check off of our list is rather it can be done.”

I don’t expect to climb Mt. Hood in my wheelchair, but Oregon has a better idea of, “You’re here and you need to get there; you can go this way or that way.”

And if you’re from the Midwest and think I’m talking out of my ass, go borrow a wheelchair and live in in for 30 days. I grantee you smaller towns are not as accessible as bigger cities. And I’m sorry but, Lincoln ain’t as big as you think it is.

And keep in mind I’m very active, which is a weird adverb to relate to someone in a wheelchair. But I’m not just some dude that lives at home and doesn’t go anywhere, just because we can go over there and do this does not mean we don’t what to go over there and do that.

I’m just saying, larger populated areas seem to have a better grasp of said topic.

13.  Thrift Shopping

A few days ago I was listening to Seattle Rock Day on KISW and Maclemore’s Thrift Shop started playing, which was odd for that station; but made sense in the context. And that got me to thinking about how happy I would be to go thrift shopping in the PNW.

Thrift shopping in Nebraska is like going into a hoarders house and finding nothing that you want and then when you do find something that you think would be $3.99 you find out that they want $19.99 for a crumbled up piece of paper.

Portland and Seattle area thrift shops just have a much better selection, you can actually find what you want, and they don’t charge a ungodly amount of money for something that should be half of that price.

Everyone out here sales their shit, they don’t donate it. And when the sale it they thing it’s perfectly okay to ask for 75 to 100% of the price that they bought it for five years ago.

Should I Be Mad?

This story may take turns, chances are – like most of my posts – they have improper grammar due to the fact that I’m really bad at editing myself. I’m writing this without any preparation – yet again like the mass majority of my posts. If I’m talking about one thing but then the drunken train conductor derails the train into another topic, don’t be surprised.

As you might know I was born with a physical disability that is rare and hereditary in nature. My disability is known as, or called, Hereditary Spastic Paraplegia or otherwise referred to as HSP.

My mom gave the disability to me, her mom gave it to her, I gave it to my son. My uncle, her brother, also had it. I don’t know much about how my uncle was effected, but what little I did see him he was better than I was but worse of then my mom; he was able to walk like I could when I was around the age of 23, couldn’t walk without support but seemed to have the energy to do so. My mom used to play basketball in high school, she did not show any signs of our disability until she was 18 years old.

Me on the other hand showed it as soon as I started walking, maybe even before then. I took my first step at the age of 11 months, but I fell down right away and gave up. It was kind of like I said, “Fuck that shit, I’m not doing that again.” But I did, I started walking on a regular basis sometime around the age of 3.

My disability has the nature of getting worse over time, that being said I used to be able to walk and now I can’t walk without assistance. Those of us born with the disability are theorized to plateau at some unknown point in life. I can still drive a car with the use of my feet. Even when I could walk you could look at me and say, “That kid walks funny.” It was not easy to hide the fact that I was physically disabled, in fact it was almost impossible unless I sat in a chair my entire life.

If you did not catch on by now, everyone who has my disability is effected differently, while the University of Michigan is doing studies and found the particular gene in the DNA strain; everyone is effected differently and it is almost impossible to distinguish how person A is effected differently than person B without physically having communication with said people.

My son is currently 13 years old, his mom broke up with me when he was around the age of 3. After breaking up with me she got married to someone in the military and from that my son spent the last 9 years moving from Washington State, up to Alaska, down to Texas, over to Florida, and when he was 12 they moved back to Washington State due to his step-father getting a job offer in Seattle.

Last time I saw my kid was July of 2016 when my aunt took me with her to Washington State as a way of her visiting her sister; my mom. Both of her sisters do not have our disability.

From what I can tell, my son, who has my disability according to the University of Michigan, does not show signs of our disability. He does, but you would not know it at first glance. You’d have to wait until he was tired of walking, or just tired in general. I remember being at Mt. Rainier watching my kid walk towards the bathroom, I was not really able to see anything other than a very minor angular change of his foot when he steps forward with said leg.

So this is where the story breaks off into another direction.

A few weeks ago I was on Facebook and saw one my sisters posts, in said post she used the word retarded as a way of explaining her and her friend hanging out and being stupid. From there came comments that were trying to correct her on using such word in said fashion. I go onto leave a comment that said something along the lines of, I can’t find the post anymore…she deleted it. I said something to the effect of…

I think of it as someone calling me a cripple.

Over the years I’ve learned how to poke fun at myself.

Unless it’s me using the word against myself, or a close friend using the word towards me in a humorous fashion; it’s offensive. I would not call you a cripple due to the fact that you might be offended by that, and even then…that is not the correct way to describe an individual with a physical disability.

Later that night I was in the kitchen heating a pizza in the oven when my sister called and said, “Can you please delete that last comment that you made.” With a slightly confused look on my face that quickly turned into anger  I asked, “Why?”

“Because I don’t want anyone to know that I’m disabled.”

We got into a short fight afterwards and shorty after she said, “It’s not you decision to…” I hung up on her. Shortly after that I sent her a text message that said, “Don’t be afraid or who you are.” Which went straight into her asking, “Why did you hang up on me?” To which I said, “Because I was offended…”

My sister…we didn’t know that she had HSP until a blood test to try to find a cure was conducted, which is where the University of Michigan comes into play. My sister grew up showing no signs of said disability. She ran track, she was on the diving team, she did gymnastics in high school; she was a very active person. No one knew that she had it until we got word from the University of Michigan that told us otherwise. She didn’t show signs until she was….29, 30, 31; I don’t know.

It has been said that those who “develop” a disability much later in life have a much harder time coping with their new found lack of movement.

“I was offended…you’re more or less telling me in a round about way that you are ashamed that you are like your brother and that you just want to act like the whole thing does not exist.”

“No, it’s not like that at all; you just don’t have the right to tell my friends things about me that they don’t know.”

While I can agree with that, that does not mean that I was not offended. After thinking about it for the past few days I came to the conclusion that I’m jealous oh her.

Unlike her I was never able to hide the fact that I had a physical disability. I had a…difficult time as a kid. Other kids don’t fucking know, and they use your misfortune as a way to gain popularity among other kids who think the same thing. It took me a long time to figure out who I was, it took me a move to another state to understand that kids just make fun of you based on what they don’t know.

It took me awhile to understand that if you don’t give them the reaction that they are looking for (which is their fucked up way of gaining popularity) and you address, and explain, the elephant in the room people tend to be more inviting.

It took me a long time to understand this, and I’m currently in the state of mind where: Well fuck it, I am who I am; if you don’t like it, I’m not going to try to be someone I’m not.

Part of  me being targeted by bullies in school was because I gave them the reaction that they were looking for. I wanted to be popular, but at that time in my life I kept trying to be someone that I was not just because I thought people might like me if I was different. That has also taught me something about girls!

If you’re a dork and you like the color pink, or whatever it is; own that shit, be proud of it. Girls love confidence, if you like to  eat eggs with ketchup, fucking own that shit; don’t try to turn into someone you think she wants you to be, fucking be yourself and be proud of it! Don’t be an asshole, every relationship has it’s struggles which require compromise.

I’m just saying…if you like rap music, expand your musical tastes because she is a fan of heavy metal, don’t stop liking it because she doesn’t like it. However if she, I don’t know…stops having sex with you because you like rap; you might want to reevaluate the person that she is.

I have to understand that my sister is on a different life path, her perspective is not the same as mine. She grew up with me, in the same house, going to the same school; she saw what I went though. Or did she? She saw it, but I don’t think she fully understood it.

From my perspective hearing her tell me that was the same as, “I saw what you went though as a kid, and I don’t want that to happen to me, so I just going to Donald Trump this bitch and act like it doesn’t exist.”

Which makes me wonder, “If we were not related would she have been one of those who made fun of me in school?”

So, I understand that her perspective is different than mine, but I’m jealous that she got to do something that I was never able to do.

There are a lot of people that can do things that I can’t, I’m not jealous of them; they did not grow up with me, they do not have the same disability that I do, and they were not able to hide that disability for about a third of their life.

She has a hard time coming, and the longer she is afraid to tell people that she is disabled the harder it is going to be on her.

I understand not letting people know that you are disabled. There have been people I talked to online who have no idea that I’m disabled, I understand not letting people know. But the moment where you’re afraid to let yourself know is where my anger comes from.

Am I right for being mad at my sister for this particular issue?

How do I address it if she wants my advice? We are clearly looking at the same picture through two different pieces of glass. I can’t just look at her and say, “Shit happens, get used to it,” she wont see that the same way I do.

That’s like a mime trying to show you how to be a public speaker with the same audience.

Not in a Wheelchair

I had a dream the other night. While I can not remember the specifics of said dream. I do remember that my fiance was in it. Tonight she was laying in bed with me asking…

Earlier that day I woke up and looked at my phone to see a text message from Shannon and I can’t really remember what was said, nor do I care to find my phone and go backwards in my text log to find out. But I do remember telling her that I had a dream with her in it, but it wasn’t the bed dream and I shortly explained.

We were laying in bed when she said, “So you had a dream about me that I was mad at you because you didn’t go on a hike with me when we were on vacation.” This lead to me explaining to her what little of the dream I remembered as she asked, “Were you disabled in this dream?” And this was after she said, “Well that just makes me look like an asshole.”

So, as far as that question goes; for those of you who do not know, yes, I am physically disabled and spend the majority of my day in a manual wheelchair. However I’m not disabled in my dreams. I never watch myself walk, I don’t sit there and watch myself walk. Mainly because I can’t walk as well as I used to, but also because it’s hard for anyone to watch themselves walk. So that’s where I think I get that from.

I know that I’m disabled in my dreams, I might even be in my wheelchair, but if I had to run from zombies I could get out of my wheelchair and run like I was trying to get the gold metal in the Olympics.

I remember having dreams where I said something like, “You can’t legally do that, I’m disabled and you can’t discriminate against me in the workplace; and by you taking those actions, you’re not telling me otherwise.” In that same dream I’d end up running the football better than Marshawn Lynch.

She asked me and it made me wonder, “How many people in wheelchairs view themselves the same way in their dreams?”

You’re Not Thinking

You ever lay in bed looking at your phone and you’re touching your phones screen with your thumb moving it up, as you are scrolling though your news feed you see a picture that either says, “Like this if you would like to party here,” or a picture of a large and/or unique house that says, “Like this if you would like to live here.” Well I’m going to give you a perspective that most of you honestly don’t think about.

You liking one of these pictures does not mean that you hate me, I don’t think that my friends who share this type of photo hate me. I know the majority of my Facebook friends. I’m not one of those types that has 900 friends on Facebook, but only knows 10% of them.

The large majority of my Facebook friends live in Washington State, and at one point in my life I was at a party with them, they were in my car, I lived with them, worked with them; you know those type of people who you actually know.

Then you got my extended family, and fuck…there’s a lot of them. The majority of them are either removed from my news feed and/or restricted unless I publicly post/share something. I don’t want them to see what type of shit I post. I’m known to do stupid shit, stuff that my friends might think is funny…but I don’t need them to know that their cousin, brother, grandson, or nephew can be that dumb.

And the mass majority of my extended family live in Nebraska where you must be a republican who believes in God, some who are more extreme than others. And let’s be honest; I’m an Atheist who believes that people are people and deserve the same rights as every other human being…oh, there is also the idea that I think drugs should be legal, some harder to get then others, but still legal and treated as a medical issue, not a criminal issue that rarely solves the problem.

Mainly they are blocked from my news feed because I don’t know when to shut up. I don’t want to fight with 3 of them who think that Donald Trump is the second coming of Jesus or some shit.

Anyhow…I’ll admit, these houses are cool as hell; I’d love to live there. That location is awesome too, having a party there would be awesome. But guess what? I can’t do either of those things.

You don’t think about a wheelchair, and I don’t blame you; that’s like me thinking about how difficult it is to run in two feet of water, it’s not something I do.

And yes, I know, I’m aware that these type of pictures are fantasies and the likelihood of either happening is very small. I would like to do that type of shit too, but for me that would be more work then it’s worth just to be like, “Hey, look where I live.”

I understand this is not your intention, but when I see my friends share one of these type of pictures I cant help but think…

“Okay, so you’re telling me that if you ever get the opportunity to do something cool you’re not going to take me. Why…because I’m too much of a hassle?  You must not care about me as much as you say you do, because to me you just seem like someone that only cares about yourself and how much fun you’re having, you know…I’d like to do it too, but you might not have as much fun because you have to worry about rather I can get from point A to point B, and when I need to move I might need your help to do so.”

Yes, I know I’m taking it too far right? None of these picture indicate to me that any part of these picturesque situations are handicapped accessible. So yea, I know that you probably won’t ever be in the situation, I get that.

Just think about how those of us in wheelchairs might see it. The situation might be different, but you’re more or less telling us in a-round-about way that if you get the opportunity to do something cool,  I’m going to be the last person you think of.

You just want to have fun right?

I Wish

It was 11:57 at night after looking back up at my TV/computer monitor that was sitting on the post game screen of Madden 17.

Last night I was having an excellent time playing Madden 17 and I’m currently on a nine game winning streak, and that’s only because some dude playing as the New England Patriots thought that going for it on 4th down was the smartest idea he ever had.

I can’t act like this kid wasn’t lucky, he was, he just kept doing stupid shit. He was so lucky that he was winning by two points, not two possessions, two points in the fourth quarter. when there was thirty seconds left in the forth quarter and he could of won by doing nothing…he had the smartest idea ever.

He passed the ball to one of my players who intercepted it in field goal range…and me being the type that doesn’t do stupid shit, I slowly made it 1, 2 ,6, or 7 yards up the field, I wasn’t trying to get a touchdown.

With four seconds left on the clock I win the game 19 to 18.

So the fact that I have 97 wins and 64 loses is because no one seems to understand that they take risks that make me shake my head at the TV and say, “Are you fucking stupid?”

Maybe I take the game too seriously, it’s just a video game right? I’ve been thinking about that. When it’s a close game my heart beats super fast, I have not felt that since I was a kid in elementary school who used to be able to run.

If I’m winning I feel rather good about it, and if I’m losing I’m the type of guy who wants to take his controller outside and pour lighter fluid on it while I watch it burn in the driveway.

So yea, maybe I do take it too far…maybe it just gets my heart going which…for someone in a wheelchair…

Anyhow I get done with a game and I think, “I can fucking go to the store.” My fiance is currently in Oregon seeing her family. So I got the house to myself as I continued that thought with, “No one is stopping me.”

The store by my house used to be open 24 hours, but now they close at midnight. So after looking that up on my phone I said out loud, “But Hyvee is open all fucking night.”

Then I looked up from my phone and saw a bottle of whiskey that I’ve been drinking most of the night and out loud I said, “Nope, I’m not fucking going now.” I then continued the idea in my head thinking: If I get a DUI tonight…that would be the worst thing ever. I can’t really afford car insurance now, I don’t need it to go up by getting SR-22, I can’t afford a lawyer, I don’t want to call my dad and tell his that he has to fund the fact that I fucked up, which he might not do anyhow. I need to go to the airport in X amount of days, what if I don’t have a car. I’m about to move to Oregon, what if I don’t have a car. What if I get a parole officer who says, “You can’t leave the state of Nebraska.”

And if I do end up in court…I don’t want my disability to become a question of rather I can even drive. A lawyer will use anything to win, fuck if it’s irrelevant to the case…they don’t know any better, and when my disability effects everybody differently it’s hard to scientifically predict what might happen just because someone else was effected that way.

So, “Nope, I don’t need trash bags that bad, I can wait until tomorrow.”

Unfortunately one of my best friends in Washington is on 1 year of house arrest with work release and 2 more years of probation due to his second DUI that almost killed him and totaled his SUV when it flipped over and ran into a tree. My other friend, no matter how stupid he might be…is still my friend who thinks that if he goes driving drunk he will never get caught, even thought he already did.

I just remember looking at my half empty bottle of whiskey thinking, “I wish more of my friends thought this way.”