My First Day in a Wheelchair

Pride is a funny thing. I'm not a proud woman. I'm not the type of woman who has to have every hair in place or a perfect mask of makeup on my face before I go to the grocery store. In fact, there was a time I could get down and dirty with the best of them, and if the job warrants it, I've never been afraid to get my hands dirty.

Then one day, plans were being made for us to take a trip to Houston, Texas. Houston meant big airports. There's Houston Hobby and Houston Intercontinental (the George Bush Intercontinental to be exact). Neither of these are particularly small airports, though Hobby is smaller than Intercontinental. Airports are quite ominous to folks like me.

Like me? Yeah.

Okay, for those who don't know the back story, I was diagnosed with Lupus (SLE) several years ago, and along with the Lupus comes some secondary conditions caused by the Lupus, like: venous insuffiency, Lupus arthritis, fibromyalgia and a few other things I won't mention here. These secondary conditions caused a tertiary condition: resistant MRSA cellulitis, in my left leg, that simply refused to heal.

Necrotizing. That's a fancy word for 'flesh-eating'. Nasty stuff, that is. Big chunks of flesh falling off my foot and part of my leg. Yeah, that hurt.

Septicemia. Sepsis. Fancy words that basically mean I had a systemic infection that had poisoned and polluted my blood, to the point I almost died. The infection and the resulting treatment ended up leaving me mostly immobile, bed-rest or sitting only, for the better part of almost two years.

I was lucky. I lived through it.

Gratefully, I am well along the path of recuperation, but walking or standing for long is difficult and often painful. The difference between now and when I was sick, though, is that now my brain wants to go and do and live and be alive again! The problem is, my body isn't cooperating, and still having Lupus flares and inflammation and pain--well...

So what does that have to do with the airport? I remember talking to my mother on the phone telling her we were going to Houston and we were talking about flying instead of driving, but that I didn't think I could handle the airport. She said, "Why don't you use a wheelchair?'

Such a simple question, isn't it?

"No," I said to my mother. "What would people think? No, I don't need a wheelchair. I couldn't do that."

My mother said, exasperated, "You've never been one to worry about what people think. What's up with that?"

What was up with that? Huh. I've never been one to worry about what people think, so surely my desire not to use a wheelchair had nothing to do with that, did it? It's not like I'm shallow or anything. But what if someone looked at me and wondered what a healthy-looking not-too-old-yet 30-something woman was doing in a wheelchair?

Once we arrived in Houston, my friend convinced me to give a wheelchair a try. We get a nice black one, shiny wheels. You know, if it weren't a wheelchair, I might even say it was pretty. It was, at least, very comfortable. Truly. I was surprised.

The first time I used the wheelchair, other than practicing with it around the house and sidewalk, was to go to the Kemah Boardwalk. This is a fantastic boardwalk off Clear Lake and Galveston Bay. The boardwalk has an amusement park attached to it, along with eateries, games, performers, live music, fireworks and more. My 14 year old son (who is about to have a birthday, so he keeps reminding me, and will be taking driver's education--please be afraid, be very, very afraid) wanted to go. I just could not disappoint him.

I did for my son what I couldn't do for myself--I sat my bottom in the wheelchair and off we go to the Kemah Boardwalk.

Using the chair wasn't as strange as I thought it would be initially. The world looks slightly different when you see it in a chair as you move around. I'm a tall woman, 5'10" to be exact, on a good day, that is, and sitting in a chair is a huge difference for me.

The first thing I noticed about being in the wheelchair while being in a crowd is... ready for this? I get an eye-level view of everyone's butts. Seriously, short or tall, doesn't matter, in a chair wheeling around, all I can see are asses. This wouldn't be so bad, if not for the fact that while I'm seeing people's asses, they cannot usually see me, until they back into me, on top of me, and shove their asses in my face.

That was the second thing I noticed about being in a wheelchair: I became 'invisible'. Oh, don't get me wrong, I knew people could see me. I don't think I was really invisible, though a few times I wished I were. The thing is, once people glanced and looked away, they would mostly try to pretend I was not there, as though they hadn't seen me.

This was tough for me, because I'm a rather dynamic person when I stand 5'10" tall and tower over most women and some men. Of course, I was completely out of my element, and it wasn't until after we came home that I realized it was me who wasn't being myself, probably because of the wheelchair.

We almost didn't get to eat at the restaurant we wanted, because it was up on stilts and the elevator to the restaurant was out of order. When we finally made our way inside, the tables were so close together I banged into other people's chairs trying to get past them. Most people tried to say nothing, but the irritation was evident. I didn't mean to, after all, but that doesn't lessen the irritation.

While dining, a waitress dropped a plate of shrimp cocktail and the sauce went flying all over me. It wasn't until later, when I was trying to maneuver back out of the crowded restaurant, that we realized there was cocktail sauce all over the steering rims of the wheels. My hands were covered in sauce and I had to be pushed until we were clear of the crowd to clean the metal rims.

At one point in the evening, when everyone was going to ride the roller coaster, and the line was rather long, I waited outside for them to finish the ride. There I sat, in the humidity, with nothing to do but sit. I watched people walk past me, not giving me a second glance. I tried to maneuver around some and look at things. I finally found myself a corner by some benches and wheeled in backward to sit by the bench.

People literally stood in front of me. Right smack-dab in front of me, as though I was not there, as though they could not see me. Some would even trip or hit the foot rests of the wheelchair, and wouldn't even bother with an apology or even a quick glance back to see if I was okay, usually giving me a look of disdain as though I were in their way. I made a point of being out of the way.

After about 20 minutes of this, I was nearly in tears, but I was choking it back. I wanted to just get up and walk to the car, leaving the wheelchair behind. I knew I wouldn't make it halfway across the parking lot before I would be stopped by the pain, but I wanted to do it anyway.

I felt ashamed. I don't know why, but I did. I hated every minute of the wheelchair part of the evening. At the same time, I loved being out in the fresh ocean air, the sounds, the music, the laughter, the fun... being with my friend and my son and around people again. It was nothing short of amazing. The duality of the two emotions was hard to take inside of me.

Then something happened.

You know how teenagers get a bad rap? You hear how they don't care about anyone but themselves or how they don't pay any attention to anything in the world but what matters to them?

As I sat by the bench, nearly in tears from the way people were treating me, or in this case ignoring me, a group of noisy, boisterous teenagers came running by, giggling and laughing--and standing right in front of me.

One of the boys, a very tall and nice looking young man of about 17, I'm guessing, backed up and saw me sitting there. He turned around and said, "Excuse us!" and he grabbed his friends and moved them out from in front of me. "I'm sorry about that," he said.

I swallowed and nodded and smiled at him.

"How are you doing this evening, ma'am," he asked. "You doing all right?"

I nodded and said, "Yes, thank you. Just waiting for my son to get off the roller coaster."

"Oh, man, it's intense!" he said. "He'll love it."

Then another one of the teenaged boys told me about the ride, and they assured me my son would have a good time. About the time my crew gets off the ride, the teenagers leave and tell me to have a good night.

Isn't it funny how one simple little interaction can change your entire perspective? That teenaged boy will never know how much he helped me that night. He treated me like a human being, when grown ups who should have known better, pretended I didn't exist, a nuisance.

If you are the teenaged boy who happened to 'see' me at the Kemah Boardwalk, bless you and thank you.

I had a good time that evening, all said and done, and I've become more comfortable using the wheelchair, when I need it. We keep it in the back of the vehicle to use just in case, and I always try to walk whenever I can, to build up strength, but never overdo it anymore. The wheelchair has made the difference between being able to be an active participant in my own life, my family, and with my friends again.

I'm not ashamed anymore. Not sure now why I ever was. I know I'm not in that chair because I'm lazy or unwilling to walk--it's because sometimes I cannot walk, and the times I can, it hurts to do so. It's that chair and time with my family and friends or a life of solitude behind the closed doors of my home. I'll take your indifference and ignoring me any day to be able to be alive and live again.

Still, there are things that are different when you're in a wheelchair. For example, when I wash dishes, because I'm lower, the water runs down my elbows and I have to mop up my arms while washing. Hey, it's a small price to pay to be able to cook for my family and clean a house on my own again, right?

It takes some getting used to. Being in a wheelchair takes some adjustment in both lifestyle and attitude. I'm learning.

If I can impress upon you one thing from reading this article it's this: don't pretend you don't see us. We know you do. It's okay to smile, to wave, to nod. We would prefer acknowledgement and stares over pretending we simply don't exist. It's okay to talk to me. I don't bite. I'm no different a person than I am when I'm standing 5'10" tall. I'm no different a person than when I'm sitting on a park bench and you walk up to chat. It's just a chair. A chair with wheels. A wheelchair.

It doesn't bark. It doesn't bite. It doesn't come alive and kill people in my sleep. Promise.