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.