How Far Can We Go if We Only Play by the Rules?
We all know people like the one in the following description:
They don’t follow all the rules, yet they never seem to have a lapse in judgment.
Everybody likes them, authority figures as well as peers.
They glide through their lives with such soft and facile steps that they barely leave a footprint.
You would think the game of life is rigged in their favor, which of course it couldn’t be—could it? Ultimately, the House wins. Nobody gets outta here alive.
They don’t claim to have a monopoly on God’s grace, they’re actually quite humble. I find them to be terminally likeable and ultimately frustrating; there is no edginess, they seem not to possess a dark side. They sport an unfathomable casualness towards life, allowing it to lightly envelop them like a loose garment. Que sera, sera, is their motto. Most of those I’ve met have been able-bodied.
I’m so envious of them I want to spit on their hair.
Then there are people like me. A serious, intense, straight-shooter, a real “no games” type who bought into the Protestant Work Ethic about the same time I went to my first Catholic confession and Holy Communion at age six. A sinner like me cannot feel casual about anything.
The modern myth-telling of my Baby-Boomer generation offered simple affirmations for the pursuit of happiness. Work hard in one of six fields: Business, medicine, law, manufacturing, education, or the trades—and you can have everything you need. Pay your income taxes and reap the benefits at age 65. Save twenty percent of your income and retire with a nice nest egg.
There were no footnotes that explain how restrictions may apply, such as: In case you suffer a catastrophic illness, have a really good insurance plan. If you don’t, make nice with the local churches, free clinics, and soup kitchens. Have a caring spouse, family, and friends on notice at all times. And if you don’t, pray for deliverance. If you lose your job, you can draw unemployment and pay through the nose for COBRA insurance premiums. Cash in your pension and 401(k) savings, live on that as long as you can. And when the money runs out, pray for a miracle. Apply for Medicaid—but if you don’t have children, you won’t qualify for anything more than a few dollars’ worth of food stamps. Try filing a claim for social security disability—and be prepared for a long, humiliating fight. Suck it up, you insufferable loser. You are a shining example of how unlucky a person can be.
Neither church nor kin prepared me for navigating the roiling waters of Multiple Sclerosis. My life perspective got turned on its ear. It used to be easy. I had all the answers. Do good and do right, be safe and be responsible. What bad things could possibly happen? You get sick, you go to a doctor, they make you all better and you go on your merry way. But I threw away that bumper sticker years ago, around the time of my first flare and the bewildering series of visits to specialists that were intent on making me a psych case. Why, Ms. Dolce, you aren’t sick. Just Catholic. Say your rosary beads and have a nice cup of tea. As though illness could be boiled down to mere superstition.
We with Multiple Sclerosis seem to be at a major crossroads right now. We with MS have traditionally been of the mindset that our dissatisfaction, our confusion, our frustration, our suffering and anxiety, is a case of personal attitude and which is correctable if we would just buck up and show a little fortitude. We’ve been telling each other for years now about the importance of compliance, following dosing instructions, keeping in regular contact with our specialists. The unspoken expectation being that if we are good little ladies and gentlemen, our bodies will reward us by not betraying us further.
We are indeed at a crossroads lately; but that is solely an American phenomenon. The UK is exerting its influence on our infrastructure, I’ve noticed it more and more when I plot a route on Mapquest and a road junction is labeled “a roundabout,” just like those circular speedways spread across England. If you aren’t on your toes you’ll be forever stuck in the loop with no way out. We still have crossroads, they won’t go away completely, not for people like you and me.
I propose that we become fluid creatures that can be the type I described in the first paragraph, the kind that fudges convention to see what will happen, who fakes it until they can make it, and who knows full well that we do it so people will keep talking to us. People who need people are the luckiest people in the world. People with MS that pressure disease researchers to stop pissing around and give us something we can really use are the gutsiest people in the world.
So let’s get Zen about it—and then, when the institutions of medicine get too complacent, let’s also get all lupine dogfight chompers on them, too. We can do it. We are the few, the flexible, the MS warriors.