Monday, May 14, 2018

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.

11 comments:

My Odd Sock said...

Ouch. Right there with you Dave. I try to do stuff on my own when I really should ask for help. After 22 years of MS you would think I'd learn.

Dave Bexfield said...

I know MOS, right? I can't even use cog fog as an excuse since my brain usually works okay and Laura wouldn't buy it.

Roland Clarke said...

What's with us guys and MS? I've had it 18 years and still believe I can do some things myself. Last time I attempted a solo effort, I ended up telling my wife that I was looking for leaks in the ceiling. Luckily, we now have a Hoya-lift so she can hoist me back into my wheelchair - rather than call a stepson to pick me up.

Rebecca Scott said...

The toddler I-can-do-it-myself impulse is so strong with me, even 14 years in. Someone at a conference I went to recently told me, after I apologized for needing help carrying my plate, “It is a gift to be able to help others. When you ask for help, you’re giving me a gift.” I’m not sure I buy it 100%, but it’s a nice way to reframe my neediness.

Dave Bexfield said...

Roland, I read your post to Laura and then she instructed me to NEVER look for ceiling leaks. And Rebecca, I'm going to use this on Laura when I ask for help. I'll just tell her that I'm playing Santa Claus. Every single day. I give her so many gifts, everyday is like Christmas!

Marsha Smith said...

We all want to be independent and it doesn’t always work. This morning my husband walked out the back door to find me twisted in my scooter. Slipped off the seat and got tangled in every part, one foot and leg under the scooter while I was trying to pull mysel back up in the seat, but my other leg was going the other direction. And I had the garden hose with me because I was trying to water my plants. Long story, short it also was in tangled in this mess. It broke in several places and I was a mess. After pulling me from this unique mess, I was dragged into the house and scolded like a child. I deserved it. I didn’t even have any shoes on so I couldn’t get any traction. It was 92 outside and the water spray from all the breaks felt good, but he was not impressed. Ok, I went to get my hair cut and ńot even my beautician was impressed, but the whole shop had a good laugh. When I got home looking like a new person I had a new garden hose, reel and new sprayer and a strict warning about not trying to do it myself. After 43 years of marriage, he knew that I was not going to give up and that was the reason for all my new stuff. Never give up-fight till the end......
Marsha the mess!!!

Dave Bexfield said...

Marsha, Marsha, Marsha. I've never used a Brady Bunch quote until now, but this one is deserved. Glad I'm not the only one getting in trouble!

Anonymous said...

I laughed at rule number one, and then at number two: fully understand both of them!

Anonymous said...

I love reading things like this from other people who fully understand why we do crazy things, or what seems to others to be crazy things!

Avril said...

Read it out to my longsuffering husband who enjoyed it. Haven't caused him too much grief, yet, but I did pass out in the bathroom one night (no injuries amazingly) putting the heart crossways in him.

Anonymous said...

I drink red wine out of a sippi cup now at the suggestion of my grand children after I spilled a glass two days in a row at two different homes!