Friday, June 5, 2009

The Use It or Lose It Approach to Rheumatoid Arthritis


Does Use It or Lose It Work for RA?

Gee, I hope you won’t mind another beach story. Here is a different view of the same beach.

Right about the time I was finally diagnosed with Rheumatoid Arthritis, I got a call from a friend who was coming to the coast for a vacation. “Bring the kids and come out to the beach and see us,” she said. I really love to visit friends. Of course, I love the beach. And, like most people, I hate to say, “No.”

So, I set out to manage the beach. At this point, the RA had only disabled my shoulders and my feet. It was pretty early in the process. However, the disability was extreme. I no longer washed my own hair, much less styled it. Walking was difficult. My kids helped me do everything that I did do - and did the rest for me entirely.

Like I said, this was early in the RA process. So I did not think about how my friends would react to the Rheumatoid Arthritis. I assumed that they would accept me as they always had, and perhaps even sympathize with my plight.

These friends had always been particularly kind to me. We had laughed and cried and prayed together. They had noticed more than once when I needed something– and given it cheerfully without having been asked. So I was shocked at the reaction to what RA had done to me.

At first, there were merely disapproving looks because I let the kids carry all the stuff onto the beach. There were lots of stairs around the condo and I was having a hard time getting around. I had learned to lean on the shoulder of my son to help me walk. I did not say anything, but I was always several paces behind my friend. She’s the “Why walk when you can run?” type – like I had always been. (See Makeovers and Bag Ladies.)

I just couldn’t keep up with her and she seemed a bit annoyed about it. But, I hoped I was wrong in my perception. Maybe she was stressing over something else.

When we were finally seated on the beach chairs, I waited for a good opportunity to tell her about the RA. It was awkward, but it never occurred to me to give up. She was a friend, after all.

However, neither sympathy nor empathy was forthcoming. There were a few comments about how her pains were worse than mine. I would rather be friendly than pushy, so I gave up pretty easily.

She carried my beach chair on the way back up to the car. I will never forget what she said to me, “You know, Kelly, what I have always believed? You either use it or lose it. Do you know what I mean?”

If only I could find a way to live in her reality – where Rheumatoid Arthritis is not real. How can I get into THAT reality? I only gulped. I did not reply. But now that I have had a few years to think about it, I know what I should have said:

“You know what I have always believed? Compassion – I always say – you either use it or lose it. Do you know what I mean?”

2 comments:

nygiantsfanatic said...

HI Kelly. My name is Angie. I've been reading you blog for a couple of weeks. I was diagnosed with RA last September.....at 38 years old. This story left me with tears and a lot of empathy and sympathy. If I had a dollar for every time I've heard "sucks to get old" I'd be a rich woman. There are some mornings I don't know what I would do without my kids. My son who is 8 and my daughter who is 5 really do understand what this disease can do. My mother-in-law has it and when she was diagnosed there were no treatments like there are today. She has significant joint damage. My kids know how serious this is and they never question when I can't do something. My friends onthe other hand.....I don't talk about it too much. I have very few, like maybe 3 or 4, who are not uncomfortable to ask how I am etc but even then Ihave one who looks at me like I'm dying. There are days where I want to poke his eyes out. I am curious....do you still talke to this "friend" from the beach? It may not be too late to use that line. It's important for people in our lives to understand what we go through.....not to pitty..... just to understand why the have to slow down two paces, or carry a chair, or open a door. You are a brave and strong woman but I'm sure you've heard that before! My blog is called RA and Me if you are interested. It's nothing fancy.

Kelly said...

No, it was too hard to call her again. And she never called me. Sorry to report that.

It may be a great help to you to have had this in the family already. So, they may sorta "get it" by now.

We have a lot in common. I am a huge NFL fan also. Your blog is good. All of our voices are needed. I like your wallpaper especially. Hahaha. ;D