Or: No Grace Under Fire

 

It started out to be a lighthearted romp about wheelchairs. It ended with a fight between me and my roommate.  But it started out to be a lighthearted romp about wheelchairs. The first incident occurred when someone was driving me to an event, and struggled getting the chair out of the back seat of the car.
"How do you get this seat to -- ouch!"
The second incident occurred when a different someone was taking me to an event, and struggled getting the chair out of the back seat of the car..
"Now, how do you get this -- ouch!"
The next incident involved a shopping trip, when my roommate said, "I'll push you -- uh, it. I mean, the chair. Do I say 'I'll push you,' or 'I'll push it?'"
A day after that, one of my fellow teachers saw me hauling the chair out of the back of my car. It was raining.
"Do you need any help?"
"No, thanks."
She watched me for a moment.
"You need an umbrella on that thing."
"And a cup holder," I agreed.
"A CD player would be nice."
I didn't mention what I wanted most: an electric motor and hand controls. I didn't mention it because it's not a possibility, and it cuts a little too close to the bone to talk about that.
A few months ago, when somebody suggested I needed an electric wheelchair, I said I would rather be carried off by Snidely Whiplash, and tied to a railroad track.
Things Change.
The trek from car to classroom has become an act of endurance. But there is only a month of school left, and I can endure it.  Lots of things are going to change next year. I am going part-time. And I am going to have to write that damn letter, requesting a driver.  But what I hadn't counted on, was the fact that in addition to driving me to the individual schools, I need help getting from car to classroom. Unless I have an Electric Thingie.
I've seen a few other people in the schools with Electric Thingies.
But they all drive vans. I know, because I've asked them. I can't drive a van. It's all I can do to keep my little Honda Accord in the middle of the lane, to park it and pull out of the parking lot without taking the neighboring car on each side with me.  And I get to park in the handicapped spaces.  I can't drive a van. And an electric wheelchair won't fit into my car. Besides, even if it could, I can't lift it.
All right, what about a scooter?  My mother had a scooter. And it fit in her car. Of course, she had a station wagon. But it fit. I remember watching my brother take the handlebars and the seat off, and pop it into the car.  I need something I can pop into my car.
So, I decided to do a little investigating. I went to Home Medical and asked about their scooters.
"I don't suppose it's possible to get one of those in my trunk?"
"Oh, sure, if you get a small one, and take it apart."
Encouraged, I asked this bright-eyed young woman to show me how to take it apart. She disconnected a blue wire. Then she disconnected a red wire.  
"No, wait a minute, that's wrong."
She reconnected the red wire and disconnected a green wire. Then she
disconnected the red wire. She moved the steering assembly out of the way, and removed the seat. Then she reconnected all the previous wires, and disconnected two new ones. She lifted off one of the batteries. She repeated the same procedure on the other side, and lifted off that battery. Then she reconnected all the wires and pulled at the steering assembly. Which wouldn't come off.
I began to think I should have come equipped with flak jacket and
shatterproof face guard.
"Never mind," I said. "That's a little more complicated than I had imagined. I can't see myself doing that several times a day at individual schools. In the rain. Or the snow." She looked crestfallen.
"No, I suppose not."  "I don't suppose there is any way to get that thing wholesale into the trunk of my car?"  "Oh, yes. Just install a lift."
"A lift?" I asked, thinking about my students ascending and descending
majestically from their school busses, the lifts rising and falling
mechanically, from a special vehicle door.  "Yes, a scooter lift." She brought out glossy illustrations of several different models.
There's a scene in the film "The Matrix" where a very naked Kaeanu Reeves comes plummeting out of this waterfall, into a pool where you are absolutely certain he will drown. All of a sudden, this golden arm, like a Deus ex Machina, comes shooting out from a hole in the sky, and plucks him out of the water.  These lifts looked a lot like that golden arm.  "Are you sure my car is big enough?"
"You have the little green Honda right outside the door? Oh, yes, it's
plenty big enough."  My heart soared. Maybe it was possible to get a scooter after all. Maybe all my problems were solved.
"Let me just go get the sales rep and he can talk prices with you."
The sales rep came back out front with her. He took a very casual glance at my car, outside the door.
Maybe...
"Absolutely not."
"Excuse me?"
"You can not possibly store a lift in that trunk. The lid is too narrow."
"What kind of car would have room for a lift?"
"Oh, any of the minivans, I suppose. Maybe one of the larger American
station wagons."
Translation: if you need to get an electric mode of transportation, and a means of getting it into and out of your vehicle, you must buy a car you cannot possibly drive.  Well, there went the end of at particular dream.  I reported these sad events to my roommate. It just happened to be at a time when her own car was giving her trouble, and she was afraid she would have to buy a new one. She joked, "maybe you should sell me your Honda, and we could both go shopping for a new car for you."  Well, we got to discussing the pros and cons of vans vs. minivans vs. station wagons. "I can't drive anything that big," I protested.
"Then maybe I should take the minivan and use it during the work day, and we could still use it when we both wanted to go somewhere."
"YES!" we both agreed. And we were off, on a wild fantasy ride, extolling what a hoot the very idea of driving, much less owning, a vehicle like that was. Completely forgetting that the original idea, the one which sparked our amusing daydream, was: how can we get an Electric Thingie into a car which I can drive to work next year.

The program I work for had a staff meeting the other day. It was two
counties north of us (our program serves five counties), and it took an hour and a half to get there. I took both my crutches and my wc. We carpooled, of course. Watching me climb into the van was worth the price of a ticket.  Down, you can manage to slide from the seat to the floor, then put your feet on the ground. But up is another story.
I don't do up.
So, there I was, both hands clinging to the seat (Are there handgrips? Of
course not.) Lift one knee as high as you can manage it. Put it on the
floor of the van. Pull with all your might until you get the other knee on
the floor. Derriere in the air, scooch around until you can manage to more or less fall into the seat.
There's a movie called, "Entrapment," where Catherine Zita-Jones is doing this elaborate dance, learning to foil the electronic beams which protect something she wants to steal. During this dance, her derriere was in the air, too. I thought of myself as Catherine Zita-Jones. Only my derriere would have made six of hers.
Anyway, when we got to the destination, my boss wound up pushing my wc. "When are you going to get an electric one?" he asked. So we talked about it. A little. I did not point out to him that IF I had an electric one, I wouldn't be riding in the rented van with him and the rest of the staff. I did not point out what I'd begun to think of as the Great Equation: you
upgrade to an electric wc when your condition downgrades to the point where anything else is unfeasible.  I want to work another year. My condition is downgrading. And I am not accepting it very graciously.
But Carolyn and I have solved the problem. Haven't we? We're going to buy a van. With a lift. Aren't we? Isn't this the solution to all my problems? So, what am I worried about?  For about a week, I wandered around, in a delusional state, compartmentalizing my mind so effectively that I believed we had the problem solved. As I believed we had somehow solved all our other problems. All our "just being a roommate, and living with somebody else" problems.  As soon as I was Diagnosed, I knew that sooner or later, I would need somebody to live with me, to help do things I can no longer do for myself. I remember when it became obvious that my mother could no longer live alone.
My brother and I tried to find an acceptable roommate for her. But she was what I thought of as unreasonable. The roommate had to be:

female
white
Christian
not Catholic
over 50
a non-smoker
a non-drinker

Additional demands: the roommate could not entertain friends of her own in my mom's house. She had to watch my mother's favorite TV preachers with her. Mom didn't care whether they went to the same church, as long as the roommate went to SOME church. In addition, my mother insisted that this person pay rent. We tried to get mom to understand that in fact, what we were doing is hiring someone to be her companion.  My mother absolutely refused to understand or accept this. After three or four unsuccessful attempts, my brother and his wife wound up moving in.  Now, when I first got The Diagnosis, and got past the point of believing that Death Would Come in the next 72 hours, one of the things that scared me spitless is the very idea of The Roommate Situation.  I did not want to be my mother. I also did not want to wind up paying somebody else to do things for me which I still could do for myself. Somebody I don't even know.  So I offered my friend a place, should it ever become expedient for her to take it. Eventually, it became expedient.  For three months before she moved in, I agonized over the loss off my privacy, and the need to share my space. I wasn't sure whether I could do it at all, much less do it graciously.
Be careful what you wish for. You might get it.  I have a day job. Carolyn's life is tied up in the theatre. We have different hours. Sometimes I don't see her for a couple of days in succession. Sometimes when I come home from work, she is dashing around madly, preparing to go out for the evening. When she's not going out to work, she's going out to have fun.  Don't get me wrong. There's nothing odd or immoral about this. She should go out and have fun, as well as work. It's just that I can't. I can't drive after dark. I can't drive in bad weather.
My life is closing in on me.  And I am so goddam sick of being the one left behind, the one to watch everybody else go out the door.
The other day, Carolyn's grown daughter was here. They were going out to breakfast with some friends. Now, there is no reason why they should feel obligated to invite me to go to breakfast with their friends. They make plenty of efforts to include me, to make sure I go with them, whenever it's appropriate. This time, it would not have been appropriate. To be honest, I didn't even WANT to go out to breakfast.
But I suddenly felt I would scream and tear my hair out if I watched them go out the door one more time. I had to get out of the house before they did.
I HAD TO BE THE FIRST ONE OUT OF THE HOUSE.
So, I went to the gym.  Big deal.
They probably didn't even notice.
But I did. I felt vindicated. And then I felt petty because I felt
vindicated.  I am not going gracefully into that good night. I am being petty.  I hate being petty.

To get back to the cars.
I e-mailed people, soliciting information on what kind of vehicle to
purchase, comparing costs, comparing likes and dislikes, comparing problems.  The cost seemed a lot more than I had originally anticipated.
But that was all right; we were going to split the cost, weren't we?
And then it hit me. No. We weren't.
Carolyn doesn't buy anything on time payments. She doesn't believe in living her life that way, nor does she have the money. Before we got carried away in this fantasy, we had discussed buying new vs. buying used cars.  Carolyn has never in her life bought or owned a new car. I don't think she's ready for this kind of payments. We need to come up with plan B.
Suppose I bought a new vehicle for my own use, and gave or sold Carolyn the one I have now.  Wait a minute. That was the original plan, wasn't it? Getting me a vehicle which could hold an Electric Thingie?
Yes. That was the original plan.
Before I got carried away.
Okay, then. I would have to shoulder the money burden all by myself. I
needed to talk to Carolyn about this. We needed to realistically face the
cost of things, and mutually accept that she was not prepared to go in on such a deal.  Besides, the car was supposed to be for me, anyway.
The two of us needed to talk, and I needed to do some serious exploration: was it going to be possible for me to drive and park a larger vehicle?  I gave myself all day Friday to drive around for work purposes, as a test.  I was grading my own ability to keep a moving vehicle in one (not two) lane. To stop before the crosswalk when I hit a red light. To park and then un-park without taking a piece of the vehicle on either side of me. All day Friday, I watched myself. I graded myself.
I failed.
There is no way, in this world, or any other, that I can handle a vehicle
larger than the one I currently own.
There is no plan B.
No plan A, either.
It jus ain't gonna happen.
The whole idea of buying a vehicle for the purposes of accommodating an Electric Thingie is pie in the sky when you die, honey.
I needed to talk to Carolyn about this. I needed to seriously have a deep, heartfelt talk with Carolyn about this.
Fortunately, she had told me that morning that she would be home by 4:30, and had no plans to go out that evening. This is a rarity which occurs with the frequency of a blue moon. If there was going to be any talking done, it would have to be tonight.
I left work fifteen minutes early. I went to the market, and got us stuff
for a very nice, fresh dinner. I went home, and struggled with the wheelchair full of packages. I put my booty in the fridge. I rehearsed what I was going to say. I looked forward to unloading my grief and frustration at the dream which wasn't going to happen. I looked forward to an evening of good food (which I can still enjoy) and commiseration.
4:30 came and went.
5:00 came and went.
5:30 came and went.
I lost my temper. I had a strong premonition that whatever it was, she
wasn't just going to be late. She was going to be like 11:30 late. Or
something.  So when she called to tell me that she and her daughter would both be home about 6:30, with pizza and a video, I was not gracious. I was not polite. I barely restrained myself from yelling at her over the phone.  And when she got home, we had a fight. Not the nice discussion about cars and lost dreams over a good meal, that I had planned, but a fight.  We worked it out, but the fact is, my pipe dream ended in a fight.  Downgrading with a vengeance.
I'm sure I'm not alone when I tell you that I've been intensely curious about the media stars who have gone public with their own cases of brain rot. Not only do I want to know how others handle themselves as their lives narrow down, but I am very concerned that the media get an accurate picture of what is happening to us. The public won't care about brain rot diseases if they don't like the spokespeople. The media stars, at least, are obligated to represent all sides of us.
There's Annette, the Disney darling. Saccharine as a child, saccharine in
the beach blanket movies, saccharine as a peanutbutter queen, the last time I saw her, she was still sweet. That's okay. A lot of people like sweet.
There's Dudley, the witty comedian and musician. He's my personal favorite. When Barbara Walters had the nerve to ask him, "What do you thin k will happen next?" good old Dudley looked her straight in the eye and said, "I think I'm going to die. And I don't think it's going to be very pleasant." I hope it's quick, Dudley. I hope it's in your sleep. I wish you well. 
And now there's the newest media star, Michael J. Fox. He's been all over all the networks, interviewed by Diane Sawyer, and others. He's younger than most of the previous "isn't it too bads". He's cuter than all of them. So far, he's done an admirable job of talking the talk and walking the walk.  My favorite line was when he commented on all the publicity he's been getting, not only for his illness, but for his house. He was imagining what people must think: "Yeah, he's got a degenerative brain disease, but he's sure got a great living room!"
That's grace under fire.
Michael has chosen to retire early and devote his time to working for a cure for Parkinson's Disease. He can afford to do that. He has lots and lots of money. If he needs to go somewhere, he can hire a driver.
Oooooh, that's petty, Sharon.
Yes, it is.
But I've already admitted that I don't have any grace under fire. I'm just
trying to get by without accidentally setting myself ablaze.