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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The Illumination

The Illumination
By Kevin Brockmeier

Every day, I am in pain. Every day, I read. Coincidence? Maybe not. I have multiple sclerosis to blame for my quotidian pain. But today I suffer from a form of pain that can’t be attributed to chronic illness, but rather, to chronic habit. I’ve got a crick in my neck. I blame the brilliant author Kevin Brockmeier. His novel, The Illumination, near immobilized me. It’s not the kind of book you walk away from (assuming you can walk.)
The premise of the novel is deceptively simple. One afternoon, there is a random change in the universe. Pain takes on a new property. Pain emits light.
To give an example: if I were a character in the world of The Illumination, there would be a white light emanating out the back of my neck, shimmering from the cervical through the thoracic regions of my spine. My tingly calves would glow with neurologic noise. It is entirely possible that my hair would be adorned with bright pinpricks, like the ones I see on MRIs of my lesion riddled brain. As my pain increases with the passing hours, so would the wattage. By nightfall, I’d be a beacon. It would be impossible to fall asleep or stay asleep beside me, as I am also an insomniac. No doubt I would be confined to a rocky outcrop on the coast of Maine, where I would be propped up facing the ocean. I would accept my fate as a living lighthouse, and wear a long white t-shirt dress with one thick red horizontal stripe.
Or maybe not. The actual characters in the Illumination are more interesting than that. They don’t come off as metaphors, but as ordinary people, doing the extraordinary job of expanding the narrative while simultaneously moving it closer to the goal. The personal, the religious, the literary, and the cosmic ramifications of The Illumination are explored from multiple points of view, all equally compelling. That’s quite a trick.
This playful narrative opens with a character that blames her pain on her ex-husband, in much the same way as I blame the crick in my neck on Kevin Brockmeier. It’s not Kevin Brockmeier’s fault that I got a crick in my neck trying to unwrap the many layers of meaning in his book, any more than it’s the ex-husband’s fault that his wife nipped off the tip of her thumb while trying to cut through a package he’d wrapped in “a thick layer of transparent tape, the kind fretted with hundreds of white threads, the latest in his long campaign of bring needless difficulty to her life.”
Brockmeier’s novel is fretted with perhaps hundreds of narrative threads, none of them needless, each a delight. I would love to dissect every chapter in this post; but I will leave the pleasure of discovery to you. It’s the first novel I’ve read that managed to coerce me into literally reading through another point of view. Get ready for the shock of recognition once you realize that this is not an ordinary novel, but an elaborate game. Move over, Nabokov.

Stress and MS

Happy day! The verdict is in. Multiple Sclerosis (MS) is not caused by stress.
The NIH (National Institutes of Health) has been following two enormous groups of nurses over two massive spans of time, and they have found no link whatsoever between traumatic life events and the onset of multiple sclerosis.
Zero, nada.
I know I sound a bit overblown. But that doesn’t mean that I am exaggerating. I’m not even over-exaggerating (a distinction we often make in my larger-than-life family-of-origin.)
The two groups studied really were enormous: 121,700 nurses in Study One, and 16,671 nurses in Study 2.
The two time spans really were massive, maybe not massive in geologic time, but certainly massive in biologic time. The first group has been followed since 1976 (Number 1 song of ’75: Silly Love Songs by Paul McCartney and Wings.) The second group has been followed since 1989. (Number 1 song of ’89: Look Away, by Chicago. Was I asleep that year?)
The nurses in both enormous groups were asked to complete a questionairre about their personal history of stressful events. After they handed in their questionnaires, they went about their normal lives. A minority of the nurses who completed this questionnaire would later find that their normal lives would be disrupted by MS.
When investigators compared the answers from the group of nurses who were destined to develop MS with the answers from the nurses who were destined to remain healthy, they found no significant difference in self-reported levels of stress and/or stressful events.
I feel so vindicated.
There are so many subtle and not-so-subtle ways of blaming of victim. With my MS diagnosis came the injunction to avoid stress. I don’t necessarily think that was an entirely bad piece of advice, although, under the circumstances, it wasn’t particularly easy advice to follow. No one ever outright accussed me of creating my disease state because I’d been under too much stress. That was entirely my own inference. I’ve been blaming myself ever since.
Since my diagnosis, I have made it a priority to avoid stress. I’ve done plenty of yoga. Not enough meditation. When I’ve gotten pissed off, I have, on occasion, actually slowed down long enough to count to ten. I am, without a doubt, a happier, more even-tempered person than I was before my diagnosis. I might not have made such an effort had I not believed it would contribute to my health.
So I can’t say I have a quarrel with avoiding stress. I have a quarrel with the notion that a person with MS has a stronger obligation to finesse stress than a person without MS.
I would like to propose that there is something intrinsically wrong with the assumption that multiple sclerosis is a flawed emotional response, rather than a flawed immune response.
I’ve had MS since at least 1988 (Faith, George Michael). I am a study of one. I am lacking a control group. As both investigator and subject of my own disease, I have had a “massive” amount of time to explore the complex interplay between multipe sclerosis and stress. For what it’s worth, this is what I have observed. Stress is not the only response that can trigger MS symptoms. Any old emotion will do. Joy, for instance. I will never forget the excruciating pain that shot through my legs when I learned that a family friend would be lending us his apartment in Paris.
If I want to eliminate pain from my life, does that mean I ought to eliminate joy?
I don’t think so.
I’d like to propose a paradigm shift.
Let’s stop fussing over eliminating stress. Let’s focus, instead, on eliminating MS.

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The Game of Life with Multiple Sclerosis

I woke up this morning with a great idea for new board game. I’ll call it: The Game of Life with Multiple Sclerosis.
The board game would be in the shape of a circle, the circle of life. There will be three concentric circles within it; three tracks connected by chutes. The outside circle is the longest. At about 45 degrees, the spaces within the circle change color, from Green to Red. Once you hit the Red spaces, you have entered the territory of Relapsing/Remitting Multiple Sclerosis. From now on, every time you roll an odd number in this territory, you have to draw a card from the Symptom Deck. This deck is quite thick. The Symptom Cards include:

Vision Loss (apply blindfold, included. Request assistance from Strong Alliance)
Weakness (roll your next turn with only 1 dice)
Sensory Symptoms (lose 2 Happiness Points)
Pain (lose 10 Happiness Points, lose a turn at forming Weak Alliances)
Bowel problems (lose 100 Pride Points, lose 60 Happiness Points, lose 1 Weak Alliance)
Bladder Problems (lose 10 Pride Points, lose 20 Happiness Points, lose weakest Weak Alliances)
Fatigue (miss a turn)
Loss of Balance (lose 50 Pride Points. One mis-step off the board. Request assistance from Strong Alliance)
Sexual Dysfunction (lose 100 Pride Points, lose the strongest of the Strong Alliance)
Mood Dysfunction (lose 100 Happiness Points, all Pride Points per turn, deduct 10 points from strength of all Alliances)
Cognitive impairment (regain all Pride Points, lose all Alliances)

Are we having fun yet?
As long as you are in the Relapsing/Remitting territory, you can discard each of these Symptom Cards after one turn. Phew. Unless you roll doubles on your next turn. Then you have to keep that Symptom Card until the end of the game.
There is one consolation. A Symptom Card loses half of its power over Happiness and Pride after the initial impact, because the novelty wears off, and the player adjusts.
If you collect too many Symptom Cards, you slide down a chute, and you spiral into the middle circle.
The middle circle is the Secondary Progressive section of the game. All these spaces are blue. As before, you have to collect a new Symptom Cards every time you roll an odd number. The difference is, you can’t discard it when your turn is over. Collect too many Symptom Cards, and you spiral into the inner circle.
The inner circle is the Primary Progressive loop. It’s the smallest circle, with the shortest life span. All these spaces are purple. In this section, we collect a new Symptom Card on every turn. If we roll doubles, the effect of the new Symptom Card doubles.
OK. Who wants to play?
The game I’ve just described is pretty much the landscape I was presented with at my initial diagnosis.
Did I want to play? No way.
To ease my mind, my neurologist presented me with the Drug Cards.
The Drug Cards were pitched as the ultimate accessories in the Game of Life with Multiple Sclerosis. If I rolled a high enough number while in possession of a Drug Card, I could take a pass on collecting a new Symptom card. With a Drug Card, I could potentially skate above the Secondary Progressive and Primary Progressive territories, and win the game.
There was a catch. Each Drug Card comes with Side Effects.
The Drug Cards I was presented with were as follows:

Avonex: 10 Happiness Points for taking control minus 1 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:
Headaches (deduct 50 Happiness)
Flu-like symptoms (deduct 100 Happiness)
Muscle pain (deduct 100 Happiness)
Weakness (deduct 50 Happiness)
Nausea (deduct 10 Happiness)
General body pain (deduct 100 Happiness)
Fever (deduct 10 Happiness)

Betaseron: 10 Happiness Points for taking control minus 1 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:

Skin reactions at the injection site (deduct 1 Happiness)
Flu-like symptoms (deduct 100 Happiness)
Weakness (deduct 50 Happiness)
Headaches (deduct 50 Happiness)
Pain (deduct 100 Happiness)
Muscle pain (deduct 100 Happiness)
Insomnia (deduct 50 Happiness)

Copaxone: 10 Happiness Points for taking control minus 2 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:
Pain (deduct 100 Happiness)
Redness (deduct 10 Pride)
Infection (deduct 10 Pride)
Inflammation (deduct 10 Pride)
Itching (deduct 10 Happiness)

Once you choose a drug, you gain 100 Pride Points. You also gain Side Effects. With each Side Effect, you lose 10 Happiness Points and 10 Pride Points. Once you’ve earned your Side Effects, you roll the dice to see how effective your Drug Card really is. The higher the Effectiveness roll, the higher the likelihood you won’t have to draw a Symptom Card, and the higher the Happiness Points will be. Unfortunately, after a few rolls, you find you can’t roll two dice anymore. You roll one. Soon you discover your Drug Card isn’t that effective. You find yourself drawing from the Symptom Card deck.

Spoiler Alert: I’ll tell what I’ve discovered about the Drug Cards I was dealt in the early years. They are all useless.

This is only one of the many startling revelations you will encounter in the Game of Life with MS.

You discover at some point in the game that the Pride Points are worse than useless. Pride Points detract from Happiness. You discover Weak Alliances are also potentially useless. You can convert Weak Alliances into Strong Alliances, but only if you play your cards right.

For every five cards you are dealt, good or bad, you gain access to one Wisdom Card. Those Wisdom Cards come in handy. Wisdom Cards become your currency. You’ll need some currency, because all your money cards fly out the window after the Drugs. If you accumulate a big pile of Wisdom cards, you can share them with other players when they hit rough spots, thereby creating more Alliances. There will be times when you will need Alliances; you never know when you might draw a Vision Loss Card, and have to wear the blindfold, or a Balance Loss Card, and need a nudge back on the board. Alliances give you Happiness Points. When your Alliances help you out, they get Happiness Points, too. The longer you are in the Game, the stronger your Alliances become. Turns out, you can keep on earning Alliances from any territory on the board, though the smaller the spiral, the harder it is to gain a Weak Alliance. But once you gain one, there is also more potential for it to form into a Strong Alliance. It all depends on how many Wisdom Cards you and the other player have accumulated between you.
Those Wisdom Cards, and those Strong Alliances, they give you Happiness Points. Oddly enough, I’m starting to learn you could potentially wind up with more Happiness Points in the purple section, Primary Progressive, than some players starting off in the green. But that’s only if you play your cards right.

What kind of game is Life with Multiple Sclerosis? At first glance, it’s a game of chance. But the longer you are in it, the more you learn it is also a game of endurance.

Would I play the game of Life with Multiple Sclerosis if I didn’t have to? Hell, no. But I’m not ready to fold.

Look here. I finished another blog entry. I earned another Happiness Point. I hope you did, too. This game’s not over yet.




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Commuter Drag

IMG_4232I am commuting today to the NIH for my monthly dose of MS medication. Look around the airport. You won’t pick me out. I am streamlined, like every serious commuter. I know which security line is actually the shorter one. I know the latest TSA regulations. I don’t flinch at the full body scanner. My boots are easily unzipped.
My red Chrome messenger bag is a red herring. I haven’t straddled a bicycle in over a year. Not since I kept falling off. But I can look like I still ride a bike. I can pass, at least for the outgoing flight.
I am not the one fumbling with her shoelaces, or the one in the wheelchair. I am not the one in that golfcart-like vehicle. I am not the one boarding the tram.
I am the one strutting to the gate.
I am not the one on the people mover. I am not the one on the elevator.
Whenever possible, I am not the one on the escalator. Whenever possible, I am the one on the stairs.
I am not the one sitting in the handicapped row.
I am not the one being offered the opportunity to pre-board.
I am the one who doesn’t look up as boarding is announced, who continues writing her notes by hand. No one needs to know I am a creature with brain shrinkage. That I’ve left my computer behind in too many taxis, too many times.
No one needs to know that on the way back, I may just be the one in the wheelchair, or the one in the golf-cart like vehicle. I may just give in and take the tram. I might take the elevator. I might accept an offer to preboard.
I am one of you. Until I’m not. Then I am of one them.
I am one of all of us. We each carry baggage. We each carry pain. Sometimes it’s visible. Sometimes it’s not.

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