Power Outage

Six days and six hours after Hurricane Irene blew out the power, a friend in Connecticut finally got her electricity back. She posted on Facebook that she’d started the dishwasher and the washing machine. She wrote: “I have to say it wasn’t entirely a negative experience. I’m actually happy to have experienced it.”
I have a hunch I know what she means. I’ve lived through a few power outages. They transform the humdrum household into an exotic locale, where previously automatic tasks require improvised solutions. With every reflexive, futile flip of a light switch, we are reminded of how much we ordinarily take for granted. We feel entitled to our electricity, darn it. And then we adjust. Instead of cursing the darkness, we light candles. We grill all the meat. We gather together. We entertain each other. We tell stories. We sleep deeply. The remaining food rots. The dirty clothes pile up. We understand the power company is working tirelessly to fix the problem. We wish they’d hurry the hell up. We understand it is useless to complain. We complain. We wish everyone else would quit complaining— we’re all in the same boat. We’re all in the same boat—and that’s kind of cozy. The power comes back again. We are oh so grateful for a good five to ten seconds. Then we scatter—one to load the washing machine, one to buy the milk, one to download distractions. Normal life resumes, with all its quotidian conveniences and isolations.
An attack of multiple sclerosis is also a power outage. The brain blows another fuse, and a function is lost, maybe for a few days, maybe for forever. A previously automatic task requires an improvised solution. I feel entitled to cross a room on my own two legs, darn it. And then I ask for assistance. I take my husband’s arm. My son pushes the wheelchair. The family draws closer together. We see ourselves as problem solvers. We wonder when the power will come back. We understand the pharmaceutical companies are working tirelessly to fix the problem. We wish they’d hurry the hell up. We understand it is useless to complain—we don’t know anyone in the same boat. We prepare ourselves to live this way forever. “This way” doesn’t stay this way for long. It gets better. We are oh so grateful. Or it gets worse. We adjust.
We never take my relative health for granted. No one understands the vast complexity of the central nervous system better than a person whose central nervous system is constantly on the fritz. The basement fuse box presents a laughably simplified metaphor. We are only dimly aware of the multitude of problems that could yet occur, and we are fully aware that such ignorance is bliss.
After our last multi-day power outage, I proposed that maybe our family could consider off-the-grid Sundays. By off-the-grid, I envisioned something sort of fuzzy and candlelit, nothing as hard-core as an unplugged refrigerator, although an unplugged stove, and the consequent necessity for Thai take-out, seemed perfectly reasonable to me. Needless to say, I was met with immediate opposition.
There’s no need to opt for hardship. Hardship will come to us. It’s too bad we can’t fully rejoice with every flip of an operative light switch, or with every synaptic leap in our central nervous system. But we can’t. If MS relapses have any benefit at all, it’s that I keep getting new chances to recover, whether fully or partly. I get to be aware of the health I’ve still got. It’s not often that I’m not in pain. I know, then, to celebrate its absence.

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Miffed vs. Pissed

The other day, I got really miffed when someone stole my handicapped parking decal. I was so put out, I did something atypical. I posted my emotional state on Facebook.
My dear friend, the novelist Goldberry Long, posted a rapid-fire reply. “Miffed? Shoot, I’d be pissed.”
When I read her words, I felt…nostalgic.
Just then I realized I haven’t been properly pissed off in ages. Not recreationally so. There used to be a time when I would have a lot of fun raging, describing, in ebullient detail, the myriad of ways in which I was right and the opposing party was dead stinkin’ wrong.
A few things happened along the way. I had a baby. Babies aren’t particularly entertained by excoriating critiques of social norms. I quickly discovered I had to take it all down a notch. A baby is a powerful motivator. So is multiple sclerosis.
Multiple Sclerosis loves the rage state. Whenever I get pissed off, MS gets pissed off, too. It musters an army of zombie T-cells to attack…my own immune system. Who wins that battle? Take a look at any of my MRIs.
So yeah, if fear of rousing my own baby weren’t enough to keep me in check, fear of rousing another MS attack would eventually polish off my rougher edges.
Getting pissed off just wasn’t fun any more.
Now my kid is fifteen. My MS is in check. Fifteen year olds happen to find excoriating critiques of social norms f’n hilarious. Even so, I find I’m somewhat out of practice at getting recreationally pissed off.
Goldberry wrote, “I’m going all the way to rage for you, Lisa.” And that prompted a wistful smile.
Though I no longer can afford to get pissed off recreationally, perhaps I can become be a fan of those who do so on my behalf. A vicarious thrill never hurt anybody.
Go, Goldberry!

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