Balance of Superpowers

Yesterday, my MS flared up out of nowhere.  That’s how I saw it, anyway, when out of the blue my legs just sank from beneath me. What an insult! I kept saying,”This is so surprising.”

My husband was unflappable. Finally he said, “This is not a surprise. You have MS.”

You would think, twenty three years after the diagnosis,  I wouldn’t need to be told I have multiple sclerosis. But it does still surprise me. I haven’t had my legs drop out from beneath me in months. I’d kind of hoped maybe that symptom would remain in the past.

While I depend utterly on my husband’s acceptance of my MS, I depend equally on my own stubborn denial to ensure I live my fullest life. Denial may be my greatest superpower. Acceptance may be his.

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Type A

Today a specialist asked me if I had a certain personality.
I may have responded with an arch look.
He rephrased the question. “How would you describe yourself? Your personality? ”
I knew where he was going with that line of questioning. He wanted me to confirm his at-a-glance hypothesis that I am a Type A personality. Apparently The Specialist subscribes to the popular theory that Type A personalities are more prone to autoimmune diseases like multiple sclerosis (MS.)
“Has anyone ever told you that you are a control freak?”
He has nothing to gain from this line of reasoning. Think about it. Of the two of us, who is more likely to have a Type A personality: the guy with the medical degree, or the gal with the MFA?
I countered, “I think that’s just blaming the victim.”
I don’t (necessarily) have a bad personality. I just have a bad disease.
The Specialist kept describing the Type A personality. “Do you set goals for yourself?”
“Sure I do. And maybe I’ll accomplish all of those goals in a day, and maybe I’ll only accomplish only one. Or none at all. My body has the final say.”
“So you’ve reached Acceptance.”
Acceptance. I didn’t know what The Specialist would think about that. Acceptance doesn’t carry much of a cachet among Type A personalities.
I ventured, “I don’t know if that’s good.”
Though of course, I do know that it’s good. In my case, Acceptance is reasonable. All my MRI’s in the past four years have come back showing no new lesions. It’s appropriate to reach Acceptance when you’re on a drug that actually works.
The Specialist was happy to hear about the efficacy of the drug, even though he couldn’t find “daclizumab” or “DAC HYP” on his portable information device. (I probably spelled it all wrong.) He seemed more frustrated that he couldn’t shoehorn my personality into his Type A hypothesis. He kept trying. He listed high achievers who had autoimmune diseases. Montel Williams’ MS. Michael J. Fox’s Parkinsons.
I could think of one other thing these guys had in common, besides autoimmune diseases. “These guys are both celebrities. You kind of have to be a high achiever to become a celebrity.”
Whereas, you absolutely don’t have to be a high achiever to become a patient with MS. It’s just not that simple. I know plenty of high achievers. And most of them are not celebrities. Most of them don’t have an autoimmune disease, either. Nor do they deserve one.
I don’t deserve one, either.
“Do you think you used to have a Type A personality, back before your diagnosis?”
Back before my diagnosis, I’d majored in philosophy. What kind of Type A personality would be stupid enough to major in a thing like that?
The kind of Type A personality who thought English majors weren’t thinking hard enough.
Fine.
Have it your way, Specialist.
He proposed, “Some people think meditation could be helpful for people with multiple sclerosis.”
So now he’s “some people.”
“Meditation could be helpful for anyone.”
Touché.
I’m not making a very good case for my being a Type other than A.
The Specialist is an Ear, Nose, Throat guy.
He finally got around to asking me to stick out my tongue.
“You know, thousands of years of Chinese medicine has taught them to diagnose an entire person with one glimpse of the tongue.”
Diagnose?
Or simplify?
I had my tongue sticking out, so I couldn’t reply. And anyway, I didn’t think of a good comeback until after I left the examining room. Here it is: “For hundreds of years, Gypsies have said they can see a person’s fate with one glimpse of the palm.” You don’t see me rushing out to consult any gypsy. I consulted my half-Chinese husband instead. My half-Chinese husband said my sharp tongue was one of the first qualities he loved about me.
So maybe there is a perk to being Type A, after all.
The Specialist had said, “Things happen for a reason.”
I agree with half of that statement. Things happen. But If you’re going to look for a reason, don’t stick your tongue out at a Chinese guy, and thrust your palm onto a gypsy’s lap. That’s just silly. None of us are so special we should waste our breath whining, “why me?”
I may have a strong personality, but I don’t think it’s so strong it could cause a disease.
While I was waiting for The Specialist, I was reading Population 485, a delightful book by a Michael Perry, a volunteer fireman. He writes, “We are creatures of myth, hungry for metaphor and allegory, but most of all, hungry for sense.”
Sometimes our hunger for sense has us gobbling up nonsense.
Perry writes, “Surely, we tell ourselves, we can’t die just because we hit a patch of pebbles on a curve.”
But as Perry clearly illustrates, we can and we do.
We identify with our problems, with our illness, with our fate, instead of detaching, and researching cause and effect.
I think I’ve figured out why I contracted MS. It had nothing to do with my personality, and everything to do with my intestinal parasites.
Surprised? So was I.
It’s a wild, random world. (Is this the observation of a Type A control freak?)
Namaste.

The Answer

In the past few months, I’ve made the same complaint to every health care professional I meet. I report that my range of abilities is shrinking. That I don’t feel as fantastic as I used to back when I first went on daclizumab to treat the multiple sclerosis.
Year One on daclizumab, I was inspired to stretch myself to my physical limits. I was suddenly able to swim three hours a day. I could hike for an hour at a time. Every other day, I’d be off to the gym. Once a week, I’d attend an hour and half yoga class. Year One, I discovered I could stretch pretty far.
I am now in Year Four on daclizumab. I still stretch myself to my physical limits. But I tell you, those limits are not what they once were. Hike for an hour? I’m lucky to walk a few blocks. The funny thing is, I do feel lucky. But isn’t that also perverse? Shouldn’t I feel…outraged?
These days, if I decide to go to an hour and a half yoga class, that means I am implicitly deciding to write off any further physical activity for the remainder of my day. Which would be fine if I didn’t have a family. But I do have a family. My day is also my husband’s day, is also my son’s day, is also my dog’s day. My cat could care less if I walk or not, as long as I am still able pour his food. But the rest of my family is aversely affected if I overextend. They would probably prefer it if I would under-extend.
I wouldn’t want that. I’m not dead yet.
Every day becomes an experiment. I check in with my body more or less continually. If I don’t, my body checks in with me. More and more often, my body is saying, “Enough.” More and more often, I listen. I stop what I am doing. And I agree it is enough.
Is this acceptance? Or is it complacency?
I think there’s a difference. Acceptance is wonderful. But complacency is dangerous, particularly when you have a debilitating disease. You can mistake a medication for a cure. You can think you are doing enough, and by the time you find out you’re not, it’s too late.
Lately I’ve been wondering if daclizumab is doing enough.
I will whine to the nurses, or to the neurologists, “I feel like my physical range is shrinking.” I will speculate, “Maybe I don’t have Relapsing/Remitting MS anymore. Maybe I’m slipping into Secondary Progressive.”
No one can tell me. There’s no clear line to cross. What they can tell me is this: every MRI of my brain comes back showing no new lesions. How have I responded? I’ve asked to have an MRI taken of my spine. I want the whole story, even if it doesn’t have a happy ending. I don’t want to be living a lie. I want a clear answer to the question: why I do I feel I am in a long slow decline?
A very clear answer occurred to me just this afternoon. I was downtown, picking up a new pair of glasses, which happens to be my very first pair of bifocals. These glasses are totally and completely nerdy looking. It turns out my distance vision is -11.75. And all these years I thought the vision span only went to -10. It looks like the parameters for bad vision can stretch like the debt ceiling. Maybe the parameters for physical (dis)ability will stretch that way, too. And stretch. And stretch.
In the optician’s office, I thought of an explanation for this insidious phenomenon I’ve been experiencing. I am aging. That first year on daclizumab, I was still in my thirties. I’m not in my thirties any longer. Maybe the answer could be as simple as that.

The Keys to Heaven and Hell

The mind is its own place,
and in itself
Can make a Heaven of Hell
a Hell of Heaven
-John Milton

Nearly two years ago to this day, I met two unforgettable working women on the Big Island of Hawaii.
Readers, tuck away your image of nubile brown women gyrating in grass skirts. The two women I’m about to describe were both, by my estimation, well over fifty—although there is a strong possibility that one of these women was much older than she looked, and the other, much younger. In any case, it is highly unlikely either woman would remember Ms. Lab Rat, or would have found our quotidian interactions at all remarkable. Yet in that day, just by going about their usual business in their usual ways, these two women inadvertently handed me nothing less than the Key to Heaven and the Key to Hell.
I met the woman with the Key to Heaven in a place you don’t find listed in any glossy Big Island travel guide. A place that has never been rated by Zagat. A place undocumented by Lonely Planet. My husband is in-the-know about quite a few noteworthy spots on the Big Island of Hawaii, as this island is his mother’s birthplace. He listed this particular location above all the other hot spots we planned to visit that day: above Onekahakaha Beach, which is totally a beach for locals, above Volcano National Park, which is totally a top-ten contender for any sane person’s bucket list. Be that as it may, this list I’m referring to was not my husband’s bucket list. It was his to-do list. You see, we happened to be staying in a plantation cottage so rural, so isolated, that there was no municipal garage pickup.
Yes, we found the woman with the Key to Heaven working at the local garbage transfer station.
I was as mystified as you are.
At first glance, the woman working at the transfer station looked completely ordinary. It wasn’t as if she wore a fragrant lei and a grass skirt. No, her outfit was more along the lines of a drab polo shirt tucked into pressed khakis. Yet this woman was utterly dazzling. She radiated well-being as she stepped out to greet us with what felt like the warmest word on the planet.
“Aloha.”
As she greeted us with Aloha, she was smiling uncontrollably, just beaming with joy, as though she had been waiting to meet our little family her entire life, and she could imagine no better place on the entire planet for this transformative event to take place than on this very spot. The garbage transfer station.
Her joy was utterly contagious. I couldn’t believe how happy I was to meet her. How happy I was to be there, at the transfer station, with my husband and son, where we could complete our meaningful task of getting rid of garbage. And to think we’d assumed this task was merely something we had to perform to go on to our real destinations.
“Aloha,” we responded. And it felt like we were returning, not so much a greeting, as a blessing.
Raise your hand if you think you know the meaning of the word, Aloha. I would have raised my hand, too, even back in the day when I thought all Hawaiian women traipsed around in grass skirts. Like most Mainlanders of my generation, I considered myself an expert on Hawaiian culture after I’d watched a portion of the three-part Brady Bunch Hawaiian Adventure. Ah, well. I didn’t know what I didn’t know. I’ll say this much—don’t look to little old freckled me, a haole, a white person, to define Aloha.
Instead, allow me to consult a genuine expert, good old Aunty D.
Aunty D’s Hawaiian Language Workshop cites the dictionary definition of Aloha as follows:

Greetings! Hello! Good-by! 


That dictionary definition is probably not too far off from my old Brady Bunch-inspired definition.
But buckle up. Aunty D and I are going to get all mystical on you. Aunty D digs a little deeper into the etymology of the word Aloha, to reveal that “alo” means presence, and “ha” means “Divine Breath.”
Now, what does the phrase, “Divine Breath” evoke for you? If you are of European origin, like me, that phrase may seem bizarre at first hearing. We white people do not, as a rule, associate the breath with the Divine. Breath can be bad. Breath can be good. (And then only when camouflaged by mouthwash and/or toothpaste.) But Divine? Get out of town.

According to Aunty D., Aloha is

…the spirit of God in Man. As life’s essence, Aloha is everywhere. It is the magnificence in every person, as well as in the `âina, i.e., the environs which is the air, the land, the sky, and the sea…

Does this deeper meaning of Aloha remind you of any single word in English?
Me neither.
Where I was growing up, The Divine was never mentioned in the same breath as breath. The official word was that God resided in churches, in flat tasteless communion wafers, (and then only through the specialized mediation of a priest.) God was not in Man (or woman), and was certainly not in the air, the land, the sky, or the sea.
Then again, I didn’t grow up in Hawaii.
Luckily for me, I was raised by parents who hauled us kids off to the woods to check in with God at least as often as they hauled us off to church. My mother would remind my sisters and I, “Your body is the temple of the Lord.”
Aloha, Mom.
I would not encounter a word even remotely similar to Aloha until I was an adult confronted with a diagnosis of multiple sclerosis, and I thought maybe the lifestyle I’d been living wasn’t working too well for me. I got myself to a yoga studio. The first word I learned there was a greeting in Sanskrit.
Namaste.
Namaste means, roughly, the divine in me recognizes the divine in you. That’s not so different from Aloha. I must say, either greeting is far superior to, “May I take your order?”
When the lady at the dump greeted us with, “Aloha” that morning, I not only heard the word, I felt it, too. I felt the spirit of the Divine in this magnificent woman. I immediately understood her source of contentment. It was within us, and all around us, right there in the transfer station. I saw that she wanted for nothing; she had a job, a useful job, in a beautiful place. Her status in life was irrelevant. Her job description might not impress anyone, but that was irrelevant, also, because she was clearly in no need of external validation.
In retrospect, I don’t think I was viewing the transfer station agent’s situation through a vacationer’s rose-colored glasses. I think she was simply so magnificently present that she blew away all the labels and judgments that habitually taint my perceptions. I tell you, it was a relief to take a moment to lay down this burden. I could clearly see the Divine in this woman, the Divine in her workplace. Sure, it didn’t hurt that the sun was shining, and that the sky was blue, but I might not have noticed the warmth of the sun, or the color of the sky, had I been wearing my habitual blinders.
I thought a lot about that moment when I started reading a book by Eckhart Tolle. What a Hawaiian might call the power of Aloha is what Tolle calls “The Power of Now.” He observes, “identification with your mind creates an opaque screen of concepts, labels, images, words, judgments, and definitions that blocks all true relationship. It comes between you and yourself, between you and your fellow man and woman, between you and nature, between you and God. It is this screen of thought that creates the illusion of separateness, the illusion that there is you and a totally separate “other.” You then forget the essential fact that, underneath the level of physical appearances and separate forms, you are one with all that is.”
In The Power of Now, Tolle implores us to, “Break the old pattern of preset-moment denial and present-moment resistance. Make it your practice to withdraw attention from past and future whenever they are not needed.”
I found myself in no rush to leave the transfer station, in no hurry to reach the many distant points on our list. That shift in consciousness proved useful. As it happened, the next destination on my husband’s list was clear across the Island, on the rainy side, and the speed limits on the one road available varied from 45 mph to 25mph. The posted changes were frequent, and seemingly random. A recipe for aggravation? Only if you weren’t driving in the Now. The view out the window was lush and verdant; life in spectacular display. That road dared you to care to be anywhere but where you were. It was a darn uppity road.
As there is no photograph of the Transfer Station, the place where we found the woman with the key to Heaven, I will supply no photograph of the restaurant where we encountered the woman with the Key to Hell.
The woman with the Key to Hell may have dressed better the woman with the Key to Heaven. But my heart didn’t leap at the sight of her. Surely, she held a more prestigious position, at a far more prestigious place. Or so you would think, if you were unaware that every place is sacred.
The hostess took her time acknowledging our presence. She fluffed a few papers on the lectern before her. Looked to the right of us, and to the left of us, without appearing to have spotted us, although we were the only people standing in the entrance.
When she ran out of ways to avoid looking at us,
it was clear that she saw three dirty people who had sloshed through ocean water, and over lava rocks. She surely didn’t see three expressions of the Divine. It is true we three were not at all attired for dinner at, say, The Four Seasons. But this restaurant was not The Four Seasons. This restaurant was located at the top of a volcano on an island where acceptable nightlife footwear is a pair of zoris, or flip-flops. Not that you’d ever see a local eating there. No, this restaurant’s clientele consisted entirely of the marooned—those of us dressing out of suitcases and backpacks. Our little family had eaten there many a time in the past, dressed as casually, or worse.
Having run out of alternatives, the restaurant hostess finally deigned to greet us. She did so mechanically, using the same word as the transfer station agent, but without so much as a fake smile on her face.
“Aloha.”
Here’s what Hawaii’s last ruler, Queen Lili’uokalani, had to say on the subject of Aloha:

More than a greeting, it is a blessing. To be ONLY used with sincerity: “‘Aloha’ could not be thoughtlessly or indiscriminately spoken, for it carried its own power. No Hawaiian could greet another with ‘Aloha’ unless he felt it in his own heart. If he felt anger or hate in his heart, he had to cleanse himself before he said ‘Aloha’.”
Did our hostess have anger or hate in her heart? I doubt her feeling was as vehement as that. She went to extreme pains to continue to treat us as if we were invisible by asking, “How many of you are there?” As though it wasn’t plain to see.
My husband helpfully suggested, “Three.”
She pursed her lips. “I’ll check and see if there’s room.” Without another word, she turned her back on us and disappeared inside the restaurant. She was gone long enough for us to start discussing a Plan B. As our hostess was insinuating, this was indeed the best restaurant for miles. But that was only because it was the only restaurant for miles.
My husband and I had just agreed to start back for the cottage when our hostess returned. She sighed, exasperated. “I can squeeze you in.”
We followed our hostess inside the serving area, a vast room with all but two tables empty. Just as our hostess had found us invisible, we found her crowd of patrons invisible. Clearly, she’d manufactured the seating problem.
Tolle asks, “Why make anything into a problem? Isn’t life challenging enough as it is? The mind unconsciously loves problems because they give you an identity of sorts. This is normal, and it is insane.”
Later, he reflects, “The pain that you create now is always some form of nonacceptance, some form of unconscious resistance to what is. On the level of thought, the resistance is some form of judgment.”
Indeed, I feel a little guilty singling out this one hostess. She is not the exception. Her behavior is almost the rule. Some people, some very insecure people, actually prefer to eat out in an establishment that snubs them. Think of the Groucho Marx joke, “I don’t want to belong to any club that will accept me as a member.”
I’d like to think there was more going in that restaurant than I was aware of. Perhaps the hostess was doing a remarkable job remaining calm, as the cook had just keeled over and died in the kitchen. Indeed, that explanation would also explain the quality of the food we would be served.
Oh, gentle reader, in my judgments, I carry the Key to the Hell, and in my observations, the Key to Heaven. I can almost hear those keys jingling, day in and day out, with every sentence that I write. I didn’t need to travel to find two women to illustrate the options. I can look no further than myself.
Similarly, I can assure you, Gentle Reader, that you don’t need to go to Hawaii to experience Aloha, or to India to encounter Namaste. Eckhart Tolle would advise you to tear up your bucket list, and stay right where you are. And while you are there, you could do worse than reading his simple book, The Power of Now. It won’t change your life. It will change how you live it.
Thanks for reading!
Aloha.
For more about the joy available to all, watch this talk by Srikumar Rao.