slowing down

 I wrote an article and submitted it to MSFocus magazine. I though I would reproduce it here.

 

SLOWING DOWN

I used to walk around four miles an hour. I drove fast, did everything fast. People even said I came in a room like a freight train.

But then Ella, my wife of twenty years at the time, contracted Multiple Sclerosis.

It was small at first. She sprained her ankle and wrapped it with an Ace bandage. When she took it off, she still felt the bandage. That was her first indication of something wrong.

From there it got worse. She never had the Relapsing and Remitting MS. Hers was Primary Progressive.

Little by little she got worse. And as she got worse, she got slower. And as she got slower, so did I.

She had more and more trouble walking and she began to have trouble knowing where her feet were.

It first became evident to me in the middle ‘90’s when we were walking through a furniture store in Kansas City. It was one of those weird stores that sold hyper modern furniture – couches shaped like lips, hat racks that looked like the Blues Brothers. It was also carpeted in a soft dove gray all over.

As we walked on the second floor, we came to a step hidden by the sameness of the carpet. She tripped and fell and sprained her ankle. I started to help her up and she leaped up, looked at me and giggled – just like she had done when she was 17.

I realized that the Tramadol she was taking had really affected her. but I also realized that she was fast becoming incapable of normal walking.

She began walking slower and more deliberately.

We have always held hands as we walked, but I noticed that our hand-holding had changed. It became more of a hand-clutching than a hand-holding. She was holding on to me for support.

I had gotten her a cane but I was handier.

As we went on, she became slower and slower.

After a couple of years, we got a wheelchair and I was the designated pusher. I found out that I had to go slower than usual again because I broke one pushing it quickly along a pot-holey street.

Occasionally I had to break loose and walk. I would leave her somewhere while I went to get something for her and would walk fast.

But little by little, we began slowing down. It became evident that she had trouble walking.

At first she just looked unsteady. Sooner or later came the lurch, what I called her zombie walk. We would laugh about it because the alternative was too unpleasant.

But soon it became apparent she was too unsteady to walk very far, even a few feet.

She got her disability in May of 2004 and her first scooter a week later.

The mobility of the scooter was pleasant to her. She could go places and have a good time without me having to push her.

The only problem was that the scooter weighed 150 pounds and, although designed to break down for storage, would have something happen to it each time we did.

So it came to me to be the designated lifter. Fortunately, I am a big guy and have always been pretty strong. I had already gotten a lot of practice lifting her off the ground in her frequent falls. And helping her when she sprained her ankle, as she did an awful lot. Either that or breaking bones, which she did a lot, too.

As I got older, though, I did find out the power of leverage. Rather than breaking the scooter down, I would lift the front end, put it in our minivan, then pick up the back end and scoot it in. I became, not only the human cane, the wheel chair pusher, the errand boy, but also the scooter scooter.

For the first twenty years of our marriage, she waited on me, cooked for me, did about everything she could do as a homemaker. For the next twenty, I have been her caregiver.

It started small but has grown to the point that she is in constant pain. Of course, since nothing has worked to stymie the pain (including a virtually worthless neuro-stimulator and a semi-tractor trailer load of drugs), she spends a lot of time in her recliner.

I have become the go-getter. Johnny, would you go get… And I do.

I mean, what else would I do? I love her. I have read so much about men who leave their wives when they contract a debilitating illness. I have even known a couple of women in that situation. I really don’t know if I could live with myself if I did that.

Now we are down the line with the second scooter (fortunately much lighter but unfortunately not nearly as good as the first – it is slower). We have had several wheelchairs and three mini-vans, a number of what she calls cripple-stickers (the handicap tags), and life is considerably slower. I even drive slower now.

So it means picking up a few heavy things. So it means getting up from a comfortable chair and going to get her meds or a glass of tea or wine. So it means being inconvenienced a little.

It is far better than being without her.

And besides, I have slowed down so much that it would be hard to start with somebody else. Don’t tell her I said that.