“Look at the Pretty Flowers!”

Setting: Early Evening

My husband is walking our two houndmutts as I, with my sticks, am trying to keep up.

HUSBAND: So what’s the itinerary at the NIH? Do you get the spinal tap the first day, or the second day?

ME: The second day. My last visit they gave me the spinal tap the first day, which was ridiculous, because then I had to perform all the evaluative tests the second day while I was still recovering and had a mild spinal headache, so obviously my scores would have turned out lower than optimal. But in a twisted way I’m kind of happy those scores were probably lower than they should have been, because now my decline won’t look so steep, since this time they’ll be testing me before they drain my spinal fluid.  I’m kind of self conscious about my pronounced decline.

HUSBAND: (Glances down the street.)  Look at the pretty flowers.

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ME: (laughing) Like you ever say, ‘Look at the pretty flowers.’

We walked on. It was a pleasant walk, after all.

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There are a lot of pretty flowers in our neighborhood.

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The Overgrown Road of Laupāhoehoe

To live successfully with multiple sclerosis, you must become an artist of improvisation. You never know when (or how) your body is going to horrify you next. MS is, I dare say, a master class in mortality. Gentle reader, we are all on the same conveyor belt, heading for the same destination. Some of us just get to have a more challenging experience resisting the inertial pull as we dodge hostile takeovers on random locations throughout our nervous system.  We need to be flexible. We need yoga. And that is why, every morning of my stay at the Temple of My Dreams, I’d leave the downstairs living quarters and make my way up the stairs, and then up the ramp, to the second floor entrance to the yoga studio.

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Once I reached the pillars, this is a glimpse of what I’d see to my left:

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I wish you could hear the ocean, as I did. Or the breezes. Or the birds. I would sometimes see glimpse a cat (or two) on my approach to the temple entrance on the second level.

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The temple itself was inhabited by a black cat.

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This cat is apparently very used to partnering in yoga.

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Ostensibly, the cat and I had the studio to ourselves. But if you’ve ever taught me yoga, or shared a pose with me, be assured, I snuck you in, too. The studio was spacious. And full.

There was a reason our family had chosen to visit The Big Island. When my husband graduated college, he and his dad celebrated with an epic two day climb / one day descent of the massive volcano, Mauna Loa. What better way to celebrate our son’s graduation from Vassar than to follow this tradition? Once we learned our son had signed on with a start-up in Beijing, it seemed only logical to give him a head start on the twelve hour time change with a ten day vacation in a time zone six hours closer to Beijing time. As parents, we’d do anything to ease a transition that is in many ways absolute. We knew our son would be starting a life far outside our areas of expertise. Our opportunities to ameliorate  his life challenges were drawing to a close.

During the planning phase, my husband kept bringing up the issue of what I would do during the Father/Son volcano expedition. Sorry, I am not the volcano vanquishing MS superhero you might find on an advertisement or some other blog. (Though I’d love to be!) I’m a fairly ecstatic swimmer/snorkeler,  but in the past I’ve gotten in some trouble overheating on the beach. My husband is accustomed to being my superhero. What would happen if I were to get stranded snorkeling while he was busy scaling the volcano with our son? His idea was to set me up in some luxury hotel for the haole (white) tourists on the dry side. No thank you! I wanted to choose my own adventure.

Meanwhile, the adventure my husband and son had chosen was going up in smoke—or more accurately—in vog. (Vog being the term for smoke that comes out of an active volcano.) As packages arrived at our house with backpacks and state of the art camping equipment, so daily updates arrived in our in-boxes on the steady eruption from Mauna Loa’s sister volcano, Kilauea. My husband kept expecting the eruption to end. But the goddess Pele didn’t seem to be running out of lava. As the date for our vacation grew nearer, he finally called the Park Service, and learned all the trails were closed. The men in my life would have to cancel their epic hike of Mauna Loa. No problem. They too, are flexible. They, too, have to live with MS. My husband found an achievable walk: an eight mile hike on Pu’u wa’awa’a. Achievable—for them, anyway. I hate to write that my eight mile hike days are gone forever. I’ll say this much: the day of the Father/Son hike, I would still have to find my own way.

But once we arrived at the AirBnB, I knew it had everything I needed for a blissful day on my own.  I could do yoga, at my pace. Break for writing. Break for meditating. Break for sitting on the lanai, soaking in the sights and sounds of the garden. Break for walking down to the beach. A five minute walk. An achievable walk. I’d have plenty to do while my husband and son took their achievable hike.

One morning, as I was leaving the yoga studio, I got a text from my husband. He’d taken a walk on an overgrown road that ran along the mountain side of the Jodo Temple. My son and I had refused to go with him. It looked like this:

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My husband texted that you could see the ocean from the road. The views were incredible. We should come! So we did. The views were incredible.

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Sure, there was a landslide to scurry over. But everywhere: island foliage in all its exuberance. Over a low wall of carefully assembled lava rocks: a view of the ocean. And after an eighth of a mile or so, the unmistakable sound of a waterfall. The air got cooler. We found ourselves under a leaf canopy, staring up at this:

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A little farther along, we stumbled on a second waterfall.

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My husband said, “All this for us? You’ve got your paved road in the wild. Our own private waterfalls.”

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All that for us. For me. You’d better believe I returned on the day of the Father / Son hike. It was just the perfect mix of challenge and beauty and wild wild wonder. At just the right temperature. Mahalo, Pele. Thank you. It all worked out just right.

Temple of my Daydreams

Let me take you with me to the place my mind returns to, several times each day—the restored Buddhist Temple and current AirBnB tucked above the beach in Laupahoehoe, on the Big Island of Hawaii. It stands maybe a five minute walk away from the rocky shore where my husband’s ancestors arrived from China. I could not have asked for a better place to spend the last few days with our son before he embarked on his new adventure: a two year gig in China.

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The rental car places on the Big Island didn’t offer hand controls on their vehicles. This meant I never had to keep my eye on the road. I got to stare out the window and seek glimpses of the ocean  as our shiny red Jeep would peel off the Belt Road and descend onto Laupahoehoe Point Road.

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The Jeep would rattle. Our son, sitting shotgun, would firmly remind his father, “Fifteen miles an hour,” as we approached another blind curve.

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We would pass hand painted signs. Slow Down. Don’t Spray.  When I would catch sight of the bridge, my heart would expand with anticipation.

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It won’t be long, now.

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I can see the minty green Jodo Temple up ahead, tucked just beyond another hairpin turn as the road descends ever closer to the shore.

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We arrive at last.

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Outside the Jeep, we can hear many bird calls unfamiliar to our ears. We can hear the faint steady pounding of the ocean. A white wicker stool on the porch contains a sign reminding us to leave our shoes outside. Mahalo. Thank you.

We see a cat or two or five skulk past. We rarely see the caretakers. They are as silent as shadows.

As magical as it is outside, I am elated to go inside. Something—no, everything—about this house soothes me. The furniture consists of an eclectic mix of state of the art lighting and kitchy beach-casual tag sale treasures. I, who have little tolerance for tchotchkes, am deeply enchanted by each object.

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livingroom

When we first arrived, whooping with delight over the character and charm of the place,  I hadn’t even made it through every room in the house before I caught myself thinking, “How can we get back here?” My desire to seal it all in my memory was immediate, and fervent.

My practice of going through each room in my mind began before I even left the place. I made it a habit to flop on my bed and stare up at the wire and crystal light fixture hanging in the corner, then close my eyes and attempt to recreate the lamp in a mental picture. I’d be disappointed, every time I opened my eyes, by my inability to create and maintain a mental impression which matched the reality of what I had just seen before me. I lamented the paucity of detail I could expect from future memories far from here.

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It is probably too late in my life for me to become a materialist. But if I could be converted, it would be through the carefully curated fabrics of each soft blanket, each sun-faded curtain I encountered there.

 

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sunfaded curtain

 

This BnB has no air-conditioning, which would usually pose a problem for me, as my MS is heat sensitive. I didn’t stop to check for this feature, for any feature, before booking the place. I scanned through the images of gleaming wood floors and a private, sun lit yoga studio above the tempting headline—Peaceful, former Buddhist Temple—and I was hooked. I had to book. Immediately. Who wouldn’t want their own freakin’ yoga studio just upstairs from their living quarters? Everyone, right? It was only after I’d entered our credit card number that I noticed the place had no kitchen, just a well stocked snack station with a refrigerator. When my husband asked, “Does it have a bathroom?” I’d snapped, “Of course it does,” desperately scanning the text I’d neglected to read in my haste. “It has one and a half bathrooms, as a matter of fact. An outdoor shower. And a clawfoot tub.”

This lovely place would reveal many more amenities over time. Such as, our own private waterfalls. More on that later. First, I will have to take you on a tour of the yoga studio. You will need to meet the yoga cat.

 

Flummoxed (Part 3 of ?)

I get a phone call from my youngest sister, PYT, a.k.a. Pretty Young Thing, just as I am flopping down in the driver’s seat after a lightweight workout with my toys at the gym.

PYT has three Young kids, four and under, who are competing with me for her attention. I win. Intermittently.

I tell her I’ve capitulated. I’m taking my new MS drug just as the doctor ordered, thirty minutes after an aspirin. “I splurged and got myself the kiddie kind.”

“The orange ones? The chewables? The ones that taste like mom loves you and everything is going to be OK?”

“Exactly.” Oh, it is great to talk to someone who knows precisely what the aspirin summons—not only the specific taste, but the specific aura our mother would convey while doling it out.

Now that I take Tecfidera after an aspirin, and a meal with a bit of fatty food—I love my avocado, I love my coconut milk—I don’t get a rash. Or an allergic reaction. Whichever. Dr. Z. had warned me it might take weeks for the rash to stop flaring up. The rash had stopped immediately.

And yet. I don’t trust the lack of rash. You know those times when your room is a mess and your mom has threatened to inspect and you shove all your miscellaneous underwear and books and socks and chewed pencils under your bed, and it’s still a mess but it’s a hidden mess? Well, PYT and I never did that. The hidden mess was our middle sister’s speciality.  (She’s the pragmatist of us three.)  Our  messes were always flagrant—out in the open. And no, we never got points for honesty. But we’d always thought we ought to. Go ahead, roll your eyes. This is not a sentiment I’m proud of.

Am I the same person now? Hell, no. I suspect I’m not the only person with MS passing (less and less often) in public as able-bodied while actively concealing I’m a total hidden mess.

PYT knows me, the past me, the one who’d railed against the hidden mess. She gets my reservation that maybe taking the aspirin is just the same as shoving a mess under the bed. Does the aspirin genuinely alleviate my body’s resistance to the drug, or does it just push the resistance under the surface, where it can’t be seen?

We ponder this distinction as my four year old nephew explores the new paint he’s created by reconstituting dried out markers and as his twin sister mixes that paint with an entirely unacceptable color and as their younger brother decides it’s time to pee.

We wonder if the new drug is even worth it, given the conclusion of the meta-analysis of over 28,000 MS patients from 38 clinical trials that most current DMTs (Disease Modifying Treatments) are fairly useless for the average patient by the time they reach my age. We ponder Dr. Z’s point that I might be an “outlier” — which sounds kind of cool — unless “outlier” means that without drugs I might be the one to get hit with an exacerbation that could permanently disable me further. His distress over this possibility is nothing to dismiss. I’ve looked around his waiting room. Not everyone with MS has the luxury of describing themselves as a hidden mess.

I share the latest conclusion about the three types of MS—which is that relapsing/remitting, secondary progressive, and primary progressive MS are not three different diseases, but rather, three phases of the same disease. The FDA approved DMTs may prevent relapses, but do nothing for other processes known as “compartmentalized inflammation,” which do not show up on MRI’s.  These are the messes under the bed, so to speak. Or more specifically, the messes inside the cells.

We speculate that maybe all those years I had credited Zinbryta for stopping my MS attacks, the change could have really been more of function of my slipping insidiously from relapsing remitting MS into a more progressive phase of a disease, where the breakdown can’t be detected by the MRI, but rather, by the lumbar puncture.

“It’s like a vicious dog that hasn’t bit anyone in twelve years on a muzzle, and I’ve credited the muzzle. But maybe the dog has just mellowed out with age.”

PYT chimes in, “And maybe the muzzle has been annoying for the poor dog.”

PYT and I are both dog lovers. We aren’t fond of muzzles.

I say, “Maybe we just have to be realistic about my MS. It’s a progressive disease. Slowly but steadily, I’ve been progressing. The drugs that work to stop relapsing remitting MS can’t do a thing about the kind of progression I’m experiencing inside my cells. Maybe it’s time to stop fooling ourselves by my taking a drug that only helps for an early stage of MS. I might be way past that phase.”

PYT says, “It sounds to me like you have taken your last Tecfidera.”

My flummoxed feeling is lifting. I starting to feel like myself again. (Talking with a sister will do that.) I share the last thing Dr. Z. said to me, “I will support you even if you don’t want to take any medication.”

His unconditional support means so much. PYT warns me that our mother and my husband will resist my urge to give up the medication. “As they should. They love you. They want to protect you.”

Protect…me? When we were growing up, I never cast myself as the damsel in distress. But that’s the role MS has forced me to play my entire adult life.

 

 

 

A New Chapter Begins

Before I took my first dose of my new MS medication, my husband thanked me for making a wonderful soup. “If you die, you’re leaving on a high note.”

If anyone wants to snatch a loyal husband after I go, you should know the wonderful soup has a base of two cups of last night’s leftover fish soup from the local Chinese restaurant, one diced green onion, one cup of  home made bone broth, one can of full fat coconut milk, one cup of assorted frozen Costco fish, one teaspoon of pulverized ginger, a sprinkle of turmeric, half a cup of dulse,  and one other secret ingredient I won’t reveal because my husband said it was “comforting.” I want him to miss me just a little.

And I don’t want him to have to miss me quite yet.

To that end, I picked one of the MS medications least likely to provoke a fatal case of progressive mulifocal leukoencephalopathy (PML) because I love our life together very much. (That same life I once found so cursed by disease way back when I was objectively far less disabled than I am today.)

My local neurologist, Dr. Z., said that this is the drug he would choose for himself or his wife. There’s no stronger recommendation than that.

I am giving Tecfidera a shot. Thankfully, it comes in pill form.

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just my luck

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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Full Speed Ahead on MS Diet

After twelve weeks of anticipation, I finally learned which MS Diet I would be assigned for the duration of the study.

And the winner is…

confidential, at least until I complete the remaining six months of the trial.

I agreed to this stipulation, just as I agreed to injesting certain supplements, to saying yes to certain foods, to saying no to others. A clinical study is a group endeavor. Like any group endeavor, it comes with the perk of getting group support. Observe the above photo, in which I effortlessly glide above the lush tree canopy of the Arenal Volcano. Am I alone in this picture? Only because of how it is framed. A tico named Aaron suited me up, belted me in, and sent me on my way. A tico named Pépé was waiting for me on the other side. And a whole bunch of brave souls I never did meet set this whole contraption up in the first place with some fishing line and moxie.

My husband went ahead of me on the zip line. Unbeknownst to him,  I took some comfort in lighly touching the vibrating line as I watched him glide to the other side. I take no small comfort in having my husband accompany me on this MS adventure. I am grateful, too, for the many friends who have shown support and interest, and to my family of origin, who are all set to eat according to the diet when I fly in to visit them on Sunday. I do not take this challenge on alone.

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