When Mike was diagnosed with MS, we were lucky enough to already have a couple of acquaintances in our circle who also suffered from the disease.
Lucky being a relative term, of course. Neither they, nor we, would have voluntarily signed up for the condition, but when it’s dumped in your lap and you’re white-faced with fear, a word from someone who has been there is, if not exactly reassuring, at least somewhat calming. Or if not calming, at least worth listening to. An assertive voice of experience in the sea of condolences that had submerged us.
Even when that voice and the curly-haired ball of sass behind it is not exactly what you expected.
“YOU have multiple sclerosis?”
We were talking to the wife of a friend of friends. We sort of knew her husband from volunteer work we did. They were one of those couples we occasionally ran into in a small town where anyone involved in the community was bound to cross paths eventually. We knew she had MS and, desperate to gather all the information we could from people who knew more than us, we had committed the mother of all party fouls (or party downers, at the very least) by bringing up Mike’s recent diagnosis at a social event.
Carol, the voice behind the inquiry, surveyed us for a moment, learning on the trekking pole she used as a cane, then shook her head.
“Well, shit,” she said in a matter-of-fact tone. “It’s not the end of the world, you know. It’s really more annoying than anything.”
Excuse me, what?
At this point in the game, just a couple of months after diagnosis, Mike had lost a bunch of weight, acquired what would end up being a permanent limp, and still had vision issues. We knew there wasn’t a cure, we knew that MS is often progressive, and to say the least we were feeling rather cranky about the whole situation.
I would have chosen a word a bit stronger than annoying.
But beginning with that evening, our common misfortune ended up forming a bond between us, and as we got to know Carol better, her indomitable spirit in the face of her disease buoyed Mike. She told us about her years as a biology professor, cracking bad puns about malfunctioning neurons in her class lectures. “Payback,” she told us with a serious look, “is a bitch,” and she tapped her head. She recounted arguing her diagnosis with her neurologist, pointing out to him that she was a biologist, she knew the science of the brain and therefore knew she was entirely too old to be diagnosed with MS which usually hit people a decade (or three) younger than her. He cocked an eyebrow and said, “You are familiar with the bell curve, then,” and pointed to the far end of curve where the odds are extremely low – but odds nonetheless. To which Carol responded with the phrase we had met her by, “Well…shit.” She told us about buying an electric bike to try and stay active and crashing it on the first outing. (The store had put it together wrong.) She giggled as she described playing to a T the role of, “the middle aged disabled woman,” (her words) on purpose to whack the town board upside the head with a fiery speech that ended up bringing the farmers market back to town. (“I’m not in physical shape to help with the market anymore, but I still want to support it, and MS certainly hasn’t curbed my attitude.”) Her list of small rebellions went on and on, but all of these stories came much later, after that first evening when she found out about Mike’s diagnosis and we started transitioning from acquaintances to friends.
That night, the best advice I received came in the form of a pair of shoes.
While Mike was off talking to another group, Carol sidled up to me knowing, I presume, that a chronic diagnosis hits a spouse almost as hard as the one diagnosed, albeit in different ways.
Leaning with both hands on her trekking pole, she looked at me with empathy and said, “It’s really not that bad. You know what I did with my MS? I decided I was going to dress it up. I went out and bought myself a really nice pair of shoes with sparkly silver stars all over them. If my foot’s not going to work right, well, screw it. At least I can dress it up.”
Unbelievably, for the second time that night I laughed out loud at multiple sclerosis.
But her words have stuck with me ever since, and in a bigger context than simply dealing with MS. How often do we try to make the things we don’t like go away? How often do we try to hide our inadequacies or work relentlessly to try and better the things we find less than perfect, whether they be an endless list of home improvement tasks or a similar list of self-improvement goals?
How often do we actually draw attention to our less desirable traits and use them as a life lesson in acceptance, humility, or…dare I say…humor?
At my off-farm job as a school administrator, I mentor a lot of new teachers. Teaching is hard. Every teacher struggles with it at times, new teachers struggle more often than others. Long ago, I learned that when dealing with overwhelmed educators, tips and tricks and the various strategies from my solution-oriented tool bag are nice…but so is a simple story of the last time I screwed up big at work. Nothing makes someone who just messed up feel better than hearing about someone who messed up bigger. Especially if that someone is supposed to know what they are doing. I’ve learned to own the time that I mis-administered the state tests and screwed up the entire freshman class’s scores. And the time I accidentally cc’d an angry parent on an email to my boss about said angry parent. And that time I shouted, “SONOFABITCH!” in front of my entire class when the fire alarm scared the bejeezus out of me. Mortifying as these mistakes were in the moment, they do look a little nicer dressed up to show new teachers that we’re not all perfect. Not even administrators.
In my personal life, I’m learning to do it, too. I’m an introvert with a very extroverted job, which is exhausting at times. In the fall, the demands of the farmers market, the beginning of the school year, and high harvest season all collude to cause me to have spectacular meltdowns. Every September there are tears, door slamming, threats to shut down the farm once and for all because it’s just too much. Mike has learned to weather these fall mental breakdowns with a few eye rolls and tired sighs. I, however, have spent years trying to hold it together through September and October until all the vegetables are put up, the market is finished, and the new teachers are trained. I smile and grin and bear it and pretend everything is grand…until I completely loose my mind, kick Mike out of the house for a day “so I can have alone time” and cry over a batch of cucumber pickles.
It’s not like I don’t see it coming every year. But every year I somehow think I can manage it better, balance the demands, hold my shit together.
So this year, I’m owning it. I’m dressing it up. I’ve invented my own holiday. It even has a hashtag. #nosocializingseptember. And I’m going to do exactly what it says. Not socialize. For a month. At least. And if I want to drag No Socializing September into No Socializing October or even No Socializing Until Every Damn Tomato Is Canned, I’ll do that, too. Because I realize that I will never be an extrovert. I will never enjoy balancing the market, school, teacher training, and harvest season all at once. And I will never be my best self in front of other human beings during that time and no self-help book or 12 step plan is going to change that.
So why not make it my own personal holiday and just take a little vacation from people, where I can? That almost feels…fun.
Dress it up.
It’s solid life advice, MS or not. It’s what we’ve landed on with the farm. Mike’s diagnosis has affected how we do things, but really only minimally. It will be part of who we are and how we have to run things forever, but it’s not the defining factor of Lake Hollow Homestead. So we’ll dress it up. We’ll own it and put on our sparkly shoes and go our merry way to plant more beets. We (I) blog about MS because it is part of our experience but it is not our entire experience. Which is also why I blog about grasshoppers and gardens, and asshole chickens who eat grasshoppers and destroy gardens.
But maybe one day our blog will cross the path of someone else going through a rough patch, and they’ll think, “Man, if they can run a farm while dealing with multiple sclerosis, then I can do (insert dream here) while dealing with (insert struggle here.)”
That’d be pretty cool if that happened one day.
But even if it doesn’t, we’ll continue to own the difficult parts of our journey, because they’re ours to own, not hide. But mostly, we’ll keep growing some really good vegetables.
Because in the end, that is the defining factor of Lake Hollow Homestead. Good vegetables, good attitude, and a really good pair of shoes. Though in our case, we switched out sparkly stars for dirty muck boots. Everybody has their own style.
The trick is to find yours.
And dress it up.