Two Years of Life on Wheels

This is an anniversary for me. Two years of life on wheels.

I posted about this one year ago, and I see I have only written two blogs since. I must do something about that.

The wheels have weathered the year well. I am sitting in them now. They are just a bit more beat up, a sign they are actually being used and I have at least somewhat of a life. But they still look good. There is an addition, a clip on detachable motor in the back, making it a power chair when needed. So far, that isn’t often. It is called a SmartDrive. I will review it here in the blog at some point. You can see it in the pic below.

When I first took these two years ago, I was told the way to use them was to consider them a part of me. When you are not in the wheels, it is just a wheelchair. But when you are, you don’t just sit in it. You allow it to meld into you and you become one with it. You and the wheels are not separate, you become a single entity. You are one. I have embraced this philosophy from the beginning and it has served me well. When someone else takes the wheels out of the trunk, I tell them, “Be gentle with that. It is a part of me.” And I mean it.

A few months ago I learned that apparently others consider it a part of me as well. Maybe not in a good way. I was at a church and I was called into the pastor’s office. She told me I was “getting too close” to the other members of the church. By “too close” she meant I was physically too close to them. I didn’t understand this. I am sitting in a wheelchair. I cannot get as close to someone as I have seen so many others do. They stand right there next to each other, almost touching.

But she told me I was anyway. She told me that when I scoot in with the wheels, they felt I was “too close” to them. It made them uncomfortable. Then she told me she felt the same way. She told me that if I wanted to talk to her, I was to approach her from the side, not the front. And then she demonstrated. But what she demonstrated actually made me physically closer to her than I would have been otherwise.

I have since found another church (more like a fellowship, actually, but not the freemasons or some such) where they are not so anal and insane and no one has a problem with me.

Some people are still uncomfortable with wheels.

I have also learned to beware the paint job. It doesn’t take much for the paint to scrape off of these things. That can make them look real bad, read fast. But I have so far managed to avoid that for the most part by being a bit more careful than I really want to. I would rather just wheel and not have to worry about it, maybe one day we will be able to do that. (Are you listening, Tilite?)

The tires need to be filled with air once or twice a week because they are high capacity (I keep them around 80psi) and temperature changes make them deflate faster. There are several kinds of tires you can get, some of them are solid and do not require air, but the ride is not as smooth. I am using a portable air compressor I found at Lowe’s to fill the tires easily. I have decided that the comfort of the ride is worth the hassle of filling them with air. Sometimes sacrifices must be made. I usually fill them on Saturday afternoons.

As far as me personally – like with last year, the reasons I am sitting in this can still wait for another day. I have deteriorated a little bit since last year, but a lot less than I thought I would. I am still around. Still alive. I know about alive and kicking, but at least alive.

More on this next year…

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Letting Go of God?

Yesterday I went to a meeting at a church where I saw Julia Sweeney’s “Letting Go of God.” This was the second time I have seen it.  I saw this a few years ago back in Virginia. This time it was different.

Last time I was not facing my own mortality. As my health continues to spiral downward, I have no idea how much time I have left. As I watched this, I realized I was asking the same questions. Who am I? Why am I here? Where am I going? And of course the big one, what will happen to me after I die?

I realized also that losing my belief in God meant I didn’t believe in anything. I thought that was profoundly sad. Was I to go to my grave with a belief in … nothing? I didn’t want that.

I don’t want that.

One thing I have in my favor is that I have already made my mark on the world. I have changed it for the better just a little bit and that is enough for me because it is better than most people get to do. I kept a lower profile than Temple (and that was by design), so I am not sure I will even be remembered. That’s okay. I did it, and that is enough. I have made a contribution. Whether I die today, tomorrow, or ten or twenty years from now, my life has had meaning. I don’t need to think it has not.

Acknowledging that and setting it aside (a comforting thing to do), what exactly do I believe in? I pondered this as I was putting the wheels in the car in the parking lot to go home. Do I have any beliefs? Is there anything I know I truly believe in? Is there anything I have faith in? If it isn’t God, then what is it?

I drove out of the church and pondered this. If one has a faith, does it have to be in the supernatural? Must you believe in a god of some description to have faith? Or can you maybe believe in something else? And if I believe in something else, then what is it?

As I was turning onto 315 N, it came to me. Yes, there is something I believe in. I believe in connection. I believe in community. I believe that a relationship with another, whether romantic or platonic, can be magical.

Do I believe in magic? That was my next question. I decided maybe I do – if I can find a definition that works for me. It won’t be Jeanie or Samantha. I do believe in illusion, but illusion is not magic. Illusion is physics. That’s why I can believe in it. Because I believe in the value of science. Always asking questions, never giving up, following what we know to be the truth, wherever it leads – whether we like it or not. What is actually real is more important than what we want to be real. I believe that as well.

I believe in kindness and compassion. I believe things like where you are from, who you love, or the color of your skin – all of these things, while they are important, they are all on the surface. Underneath all of that, we are all the same.

We don’t need a border wall. We don’t need laws prohibiting gay marriage. We don’t need to yell at the poor that they are lazy and fraudulent. What we do need is to understand that we are not all the same and that is okay. We need to be celebrating the beautiful and wondrous diversity of humanity.

Some people, many people, are unable to do this. They are so busy screaming that gays and immigrants are going to hell that they have forgotten how to love their neighbor.

That’s something else I believe in – loving my neighbor. Not because Jesus said so, but because it is the right thing to do. That includes the gays and immigrants and Muslims and Mexicans and the poor.

I believe it is okay to speak against hate. Not only is it okay, but it is something we must do. As long as we remain silent, the hate will continue. Speaking against it, writing against it, marching against it, voting against it, all of these things and more are in our best interest. We cannot – we must not – let hate win.

For the remainder of my life, I will have a dark cloud of uncertainty hanging over my head. I go to sleep every night not really knowing that I am going to wake up in the morning. I could take a turn for the worse at any time. And yes, this is true of all of us, but it is more true for me. And when you are in that kind of situation, it changes you. I have always felt this way about things, but it is only recently that I have really started to live like it.  I am trying to make sure that my decisions and my actions always reflect these beliefs.  Sometimes I fail.  But from now until the end, however close or far away that may be, I will not stop trying.  It is the highest priority I have.

One other thing I believe – you do not need to be a christian to be a good person.  You do not need Jesus or the Holy Spirit to guide you.  In fact lately if anything that appears to be a hindrance.  What you do need is morals, values, character, and integrity.  No relation to religion.  The two can go together – or not.  I have seen both.

My thoughts and views on what is important and what is not are radically changing. They are becoming a lot more accurate than they were. I am thankful for this. I may not believe in God, but there are things I do believe in. Good things. True things. Honest things. I will not die believing in nothing.

For if I die, let it be with honor.

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Thoughts on Autism Awareness Month – 2018

Being this is April 2nd (World Autism Awareness Day), I want to post some thoughts on National Autism Awareness Month. I feel qualified to do so as I was in the board room with 14 others when Autism Awareness Month was created. I had a vote on it. I was the only person with autism who had a vote on it. I was the only person with autism who had anything to do with creating it.

That said, for the past several years I have stated that for me, Autism Awareness Month begins on April 3rd. That is true again this year. It makes me angry that autism speaks has turned April into a cash cow for themselves. That is not why I voted for it. I do not have problems with that organization for the same reason others with autism do, but I do have problems with them. Lately they are getting better. Maybe in another two or three years if they get it together I can actually start to support them. I’d like that. The more of us who are on the same side, the better it will be for everyone.

But for now, Autism Awareness Month for me begins the day after, on the 3rd. It continues for the rest of the year.

This year I am seeing a continuation of something I have seen the past few years and it is bothering me more than autism speaks. That would be people with autism (and a few parents) posting memes on Facebook that April is Autism Acceptance Month or today is World Autism Acceptance Day.

No. Just, NO.

First, let me be clear that I am all in favor of acceptance. I have been fighting for autism acceptance since before a lot of those people posting the memes were even born. So it is not acceptance I have a problem with. It is the way they are going about it.

Posting fake memes about a month that does not exist is not going to create autism acceptance. If anything, it will do just the opposite. People will read the memes and say, “Look at those crazy autistics, they don’t even know what month it is. What a bunch of idiots!” That doesn’t help anybody.

What will help create acceptance is creating awareness. This is why we have an awareness month and not an acceptance month. We in the boardroom named it “awareness month” for a reason. We knew that once we had the awareness, the acceptance would naturally follow. If there is not yet enough acceptance, it is only because there has not yet been enough awareness.

See how that works?

From the very beginning, it has been the nature of humanity to criticize and to fear what it does not understand. It is part of who we are. It always has been. The ways and behaviors of people with autism can seem alien to a lot of people who have never been exposed to things like that before. Seeing a young kid repeatedly bang his head against the wall or a pretty girl in her 20’s talk about nothing except Doctor Who for hours on end is not something you come across every day. There are reasons these and the other behaviors and symptoms of autism occur, and what we need is awareness. Once the awareness is there, people will be saying, “I get it. I understand it. I am able to accept it” – and we will have acceptance.

Posting memes demanding acceptance is not going to create acceptance. If you seriously believe it is, you need to go back to advocacy school. What will create acceptance is awareness. “This is what it is, this is why it is happening, this is what we can do about it.”

That awareness will create acceptance.

This is why we have an awareness month, not an acceptance month. We do not need an acceptance month. We need an awareness month.

So if you are one of these people out there on Facebook posting “Autism Acceptance Month” memes, I would encourage you to go out and spread some awareness. That is the only way we will ever achieve acceptance.

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A Year of Life on Wheels

Starting a new (and simpler) blog with an anniversary.

A year ago today it finally happened. I had been told 20 years prior that it would and I had always believed it was inevitable. That it took 20 years is in itself a cause for celebration.

That was one of the many thoughts that went through my mind at Martha Morehouse Wheelchair Clinic at OSU as I looked for the first time at the wheelchair that would become my new home.

It was sleek, it was stylish, it was sporty. At least as sporty as any wheelchair could be. It was custom built to my measurements. It was forged of titanium and carbon fiber and had a few subtle modifications on it to meet my own unique needs. It was a little over $5,000.00 and insurance was covering 100% of the cost. It was pretty much a gift.

I sit in it now as I write this.

It looked nothing like the low quality, uncomfortable, institutional chairs you find at doctors offices and inside the door at hospitals. I know because I have one of my own. This was a serious wheelchair designed for complete independence. It was built for comfort. This was a chair made for someone who didn’t have much of a chance of ever getting out of it. You don’t spend five grand on something so temporary.

I was in this for the long haul. I realized that as I looked down at it. Yes, I was standing on my own two feet, but it was difficult at best. Realizing it was a one of those rare moments that define your life, I walked over and sat down in it for the first time. It was far more comfortable than I had ever imagined it could be. Yeah, I could easily spend all day in this thing.

The weight, complete with all the wheels and accessories attached, was 37 pounds even. Like most wheelers, I eventually opted to remove the arm rests because they got in the way. (I still have them in the closet.)  That lowered the weight just a bit. It folds nicely and fits perfectly in the trunk of my Audi. I can put it in there and go just about anywhere. The chair is extremely maneuverable and easy to get around in. It is designed so it can get down most aisles and get around corners and tight spaces that a standard wheelchair would never be able to. There is no need to have anyone push you because it is so easy to push yourself. One push and you keep going. (It does have handles to push on it, they fold down out of the way.  Very few people have pushed me.)  This is the chair that everyone who is in a chair wants to have. Quality.

But it is still a wheelchair.

At first I didn’t really think much of it. Yes it was a change, a big change from being on my feet, but I figured that I had already made my contribution to society. I didn’t need to prove anything to anybody because I already had. This wouldn’t be so bad, I thought. Consider this full of hubris Facebook post.

Tomorrow I take possession of the wheelchair and sit down in it for the first time. This would be a life changing moment for anybody. As the wheels were being built, I struggled to come to terms with how I felt about this. It isn’t easy trading in your legs for wheels, and I was feeling conflicted emotions about it that I was desperately trying to work out. But now, as the hour quickly approaches, I know longer wonder how I feel. I know exactly how I feel.

As I have said before, I have had an amazing life.  Some years were spent in the darkest places a person could possibly be, others were lived while soaring the clouds of joy. I have been confined to an area of just a few square feet, and I have experienced freedom that few others will ever know. I have made decisions that have saved marriages, families, and the lives of children, and I have made mistakes that have torn all of those apart. I have celebrated with parents when their children showed the courage find their way home, and I have held inconsolable mothers in my arms as her kids tried to kill themselves. I have basked deep in the glory of what may or may not have been God, and I have had reason to question His very existence. I have witnessed unspeakable horrors, and I have seen unexplainable miracles. I have shivered alone through nights in the cold, and I have fallen asleep cradled in the warm arms of a princess. I have been lost in places others have never returned from, and I have faced numerous demons – staring them down, straight back to the pits of hell.

For someone who has been through all of that, and so much more, life on wheels is, both literally and figuratively, a walk in the park.

Yeah. I got this.

While all of those things are true, it is also true that I did not count on things getting worse over the next year. I do not have such hubris about it anymore, nor am I quite as easy going about it as I once was. I see the future and it looks bleak, indeed.

But I am not writing this to talk about that. That, why I am in it, and the misdiagnosis that lasted 20 years is a topic for another day. I am writing this to talk about some things I have learned over the past year while I have been sitting in this contraption. It has certainly been an education.

The entire illness has been an education. We see people like this sometimes, all of us do. We see people who are in the chairs and who have “personal care attendants” to tend to them. We, blessed to be standing on our own two feet and taking that for granted, look upon them with some measure of pity and we are thankful we are not them.

But now I am them.

First, one of the things that surprised me the most has been other people’s reactions. It is not what I expected. Well, some of it is, like the evangelical christians implying that somehow it is my own fault and all I have to do is tell myself to get over it and start walking again. Or perhaps if prayer has not healed me then it is my own fault because I did not have the proper faith to be healed. That much harm I knew to expect and they have not disappointed me. But other things have been not so obvious.

For instance, aside from the aforementioned evangelicals, I have found that for the most part, people (including non evangelical christians) treat me better when I am in the wheelchair than they did when I was on my feet. I have wondered if maybe it is because I have a nice chair. Would they treat me like this if I wheeled around in one of those institutional chairs? I wonder. I still have it, I may do an experiment someday.

Places like businesses and restaurants have been very kind to me. They have been much more friendly. Yes, a few of them have talked down to me as if being in a chair somehow makes me less smart, but mostly they have just been kind. They have done things like give me things on the house that I know they would not have done if I was walking. I appreciate that. When they take my order, they may smile more, but they usually don’t treat me like I’m stupid. This is a welcome change from what I expected. If they do feel pity, they have learned not to show it. Or maybe because I tend to be bubbly at these places, they see that and respond in kind. Maybe if I was a sourpuss they’d feel more sorry for me and rightly so.

I have had to work harder at not being a sourpuss. The people around me, it is not their fault. I can’t blame them for it. I want to, yes, but it isn’t right and it isn’t going anybody including me.

When you were a once jet setter every weekend and now you are in a wheelchair, that’s a huge (and I mean huge) adjustment to make. Autism on top of that sure doesn’t help. It is so easy to become angry and depressed at just the slightest little thing. That’s because being in a wheelchair makes you angry and depressed. I know there are people out there who have adapted, but a year later I am not just not there yet. I am not sure I ever will be.

It took me several months just to learn how to do a wheelie. It does bring me just a small amount of joy to pop wheelies in the chair. I like doing this, as anyone who has been around me knows. You have to take happiness where you can get it. I also tend to take full and complete advantage of the mobility of the chair. When I am sitting somewhere I move around if I want to. I have noticed some people don’t like that. Tough. One person once even went so far as to tell me he thought the wheelchair was just one big fidget. I could not disagree. For me, that’s exactly what it is. This is likely because of the very comfortable ergonomic push rims that make the chair so fidgety.

There are a few perks that come with wheels. One of them is the comfort of the chair. If I am going out to eat or to a meeting or some other place where I will be sitting, I take the chair even if I don’t need it. I am still, for the moment, capable of walking from the car to the building and sitting down. I can still do that much. I take the wheelchair anyway because I know the wheelchair will be more comfortable than the chairs they provide. It has to be. It was built around me from the ground up.

As a bonus, because it is my personal chair, I am guaranteed a place to sit and to some extent I feel “home” even when I go out. This feeling is important to wheelers because a lot of us get out so infrequently.

Another bonus (the best one by far) is the parking placard. I started with the ones you hang on the rear view mirror, but I was always forgetting to put it on. Somehow I never got a ticket. But I decided to do something about it before I did and got plates with the little wheeler guy on them. I don’t really like advertising disability down the road like that, but I do like that I can park and just leave the car. I have noticed a lot of people leave the placards on the mirror even when they are driving. This is against the law.

I have not yet figured out how to do grocery shopping in a wheelchair. I have seen it done, I have seen wheelers push that little trolley  along in a wheelchair, but I have not yet figured out how to do that. One of the few places I still go without the wheels is to the grocery store. I have not fallen yet, but I have come damn close many times.

There is an awkwardness that comes with a wheelchair. This may be the hardest part of it for me. Most of us are on our feet and when we want to move from one location to another, we just get up and walk there. We don’t think anything of it. It is just something we automatically do because we can.

But wheelers are not so fortunate. Yes, this chair is very good at maneuvering around those tight spaces, but there are still places I can’t go. Or at least not easily. You know how if you see a mens or ladies sign and it has a little wheeler guy on it because it is supposed to be accessible? It isn’t.

You can tell it isn’t because there is a door right there. How do you open the door to go into one of those places? I have not figured this out yet, either! (And WHY is there always a bar behind the toilet? What am I missing? Is that actually helpful? It must be, but I don’t see how? Someone enlighten me, please.)

Getting up and down aisles is not always easy. Neither is getting in and out of buildings. And a whole heck of lot of buildings do not have elevators, so you are totally screwed. These are supposed to be taken care of with the ADA, but they are not. And the ADA itself may soon be a thing of the past.

There is much more I can say and I will in later posts. This one is long enough already.

Happy anniversary to me.

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