Shocker! Caregivers Are People, Too

Poor Laura. I pride myself on being a bit stubborn with my feisty multiple sclerosis. Often it works. I’ve explored Machu Picchu, scooching down steps on my butt while Demi Moore looked on. I’ve hiked across rickety, bouncy wooden bridges risking life and limb, and survived. I’ve kayaked when I had no business kayaking, driven when I had no business driving, and cycled when I had no business cycling. And then there was last Friday night.

We know how this story ends. Not well.

So Laura and I were at a concert at a local winery, listening to a master sarod player accompanied by traditional Indian tabla drums and the melodic drone of the tanpura. (Yes, I had to Google all of those things, too.) The venue was intimate, cozy, and… not terribly handicap accessible. After navigating grass, crowds, and wine barrels, I tucked into a spot near the stage out of the way of the “abled” and parked my wheelchair to enjoy the performance, while my wife and mom found seats several rows back.

So far, so good. The music was trance-like, and took me back to my travels with Laura 25 years ago to our hazy hot week in Madras. And then there was intermission. Intermission, may I remind you, is when our brains double check our bladders. And my bladder, after the required wine at a winery, was now wide awake as if it had had several shots of espresso.

Fortunately, I was informed that the bathroom not only had a ramp, but also was fully accessible with multiple grab bars. As my 3-year-old niece is wont to loudly exclaim with each and every trip to the facilities, I CAN GO POTTY ALL BY MYSELF! There was just one important, sorta key fact that was left out: to access the accessible ramp to the accessible bathroom, there was this rather problematic 3-inch threshold to get there. Three inches, maybe even just 2.5. How hard could three inches be to navigate solo in a wheelchair, especially if you drop down backward, very, very carefully?

I discovered, hard. As, in excruciatingly slow motion, my wheelchair became a recliner, perfect to view the winery’s exquisitely wood-carved porch ceiling and the nose hairs of panicked patrons now sporting saucer eyes.

MS is everywhere in our lives. Even random Bentleys remind us.
“THAT’S my HUSBAND,” said my rescuer, Laura, as she and other concert-goers rushed to prop me back up. She had been in the line for the bathroom, and was shortly headed back inside to check on me and my needs (oh, so many needs), as she always does.

I have one primary job as an MS spouse: do not get hurt. Thankfully I didn’t! No bumped head, no concussion, no stitches—just a bruised ego. But I did violate rule #2: do not freak out your spouse. I should have asked for help from my care partner. It was an easy ask. But when you have a disability, you want to be as independent as you can be, and that urge can cloud judgement like a Seattle winter.

I upset Laura, which I try NEVER to do. But boy was she was angry, maybe not at me directly, but at this disease, and what it does to our lives, and how it reshapes virtually every little thing. And I can’t blame her. Especially if I had to deal with me.

Caregivers are allowed to get angry. They are allowed to hate the universe, at least temporarily. And they are allowed to roll their eyes when their spouse tries to assuage their feelings by dramatically playing Peter Gabriel’s In Your Eyes ala John Cusack in Say Anything. Yes, I resorted to desperation measures to cheer her up. I looked as despondent as Lloyd did in the movie, only holding up a cell phone instead of a boombox because, well, it isn’t the '80s. And, surprise, it worked about as well as it did for him.

The next morning all was forgiven (mostly). Because when you are coping with a challenge like MS, letting something like this linger doesn’t make it any easier. But for a few hours, a cathartic release is sometimes just what the doctor ordered, and even the best caregivers don’t need a prescription to go there. And it serves as a perfect reminder that caregivers most definitely are people, too. Always treat them that way. Because if you don't, holding a boombox over your head can sure get tiring.