Stubborn or Stupid?

Stubbornness is a trait often revered in those with a disability. That attitude of defiance that we give to our disease so we can power through the tougher times. That ability to raise our middle finger and shout “Take that, MS!” as we soldier on in our quest for normalcy. Alas, there’s a fine line between stubborn and stupid, especially when you have multiple sclerosis—and I’ve got both pretty well covered. Don’t make my mistakes…

Walking around the kitchen, eschewing your walker, cane, even the helpful wall? Stubborn! Falling in said kitchen and breaking a leg? Ah, stupid. Killing a big, very hairy spider for your wife despite your physical limitations? Stubborn! Slipping and falling after cleaning up said spider, bumping your head necessitating a trip to the ER before you bleed out? Ah, stupid. Decorating the Christmas tree, insisting on hanging every sharp, star-shaped ornament personally even though you have crummy balance? Stubborn! Teetering into the Christmas tree, bear hugging it before knocking it completely over onto your unsuspecting dog, while in the process impaling yourself on multiple stars, glass icicles, and a pointy Santa that gets lodged deep inside your left nostril? That would indeed be stupid, especially since I don’t even have a dog. Thankfully I’ve avoided such an accident to date. (Memo to self: don’t do that.)

Holiday accidents that could spur a viral video on YouTube aside, there is one area of stubbornness that many with multiple sclerosis hold onto with fervor: driving the way you’ve always driven. And I’ll say it now: that’s stupid. Really, really stupid.

There are myriad ways our disease tries to keep us from driving: eyesight, coordination, leg numbness, cognition. When a bout of optic neuritis hit me in 2007, my vision, even corrected, dropped to 20/40—the limit for driving—and I also went colorblind, so red and green were the same color (hardly ideal when it comes to streetlights). That eventually passed, but numbness in my feet and legs only got worse. I started changing the way I drive because of MS in 2008, just a couple of years after diagnosis.

Many of you know what changes I’m talking about. At first they are subtle: avoiding rush hour, leaving more space between you and the car in front of you, getting prepared to stop earlier. Avoiding wayward buffaloes at all costs. Eventually I stopped driving friends, family, and even my wife for safety reasons (they were all better drivers). For a year and a half I didn’t drive at all. When I did start up again, I stuck to side streets, off hours, daylight, the works. For years the writing was on the wall, but I was a stubborn MSer. How stubborn? Stupid stubborn.

Now in the ten years that I’ve had MS, I’ve never had an accident (other than running into a person who jumped in front of my truck trying to commit suicide, long story). But I have had some disturbing moments. Once, when I reached a stoplight with the engine revving full steam and the car not slowing that quickly, it took a second or two to realize I was stomping on both the brake and accelerator at the same time. And then there was that one time when I missed the brake entirely and nearly veered into traffic forcing me to loop back over curbs before I found that elusive stop pedal.

But I told myself I could still drive okay—I just had to be more careful. Yeah, that was all. I’d drive with one hand on the wheel, the other under my right leg to lift it from accelerator to brake. Leaving 10 or 20 car lengths of space between me and the driver ahead of me should allow ample time to find the brake if I miss it the first (or second) time. And to avoid driving through the back of my garage (like a few too many of my MSer friends, yikes!)—which was located up a short but steep incline, meaning I’d have to gas it to get up the hill and then immediately get on the brake when entering the garage—I’d just text my neighbor to park the car for me. Wait, what?

So this past July I got hand controls … and I’ve been beating myself up ever since. The very moment I started modifying how I was driving back in 2008 is when I should have started the switch. I could have been driving all these years safely, without a worry. I could have been sharing the driving load with my wife on all those road trips. I could have been enjoying the freedom of the open road instead of dreading every moment behind the wheel.

If you have ever wondered to yourself if the time is right for hand controls, the time not only is right, it was probably right a few years ago. There are times when being stubborn with MS is laudable. And there are times when it is just plain stupid. Please learn from my mistakes. And for gosh sakes, watch out for man-eating Christmas trees.