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.

 

 

 

Advertisements

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.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 269 other followers

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.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 269 other followers

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.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 269 other followers

Dump Him

Mother’s Day, 2012

“If you want to know how a guy is going to treat you down the road, take a look at how he treats his mother. If he’s respectful of his mother, he’ll be respectful toward you. If he’s a jerk to his mother…you’d better dump him. Fast.”

My mother’s guidelines were intended to direct me to a suitable marriage partner. I applied them accordingly, and married a guy who adored his mother. That was twenty years ago. My mother’s advice proved so effective, I thought I’d never have the need for it again.

This summer, I was given a rare opportunity to apply Mom’s precepts to a relationship in an entirely different sphere. The man in question had done some business with my lady-parts, but that did not make him a potential romantic partner. The man in question was my urologist.

When I’d met the urologist in his clinic, I’d been dressed in a johnny coat. He’d been dressed in a suit and tie. His old-world formality, his swarthy complexion and his slicked-back, jet-black hair reminded me of my dear departed Grandpa Blanco. But despite the family resemblance, deep in my heart I didn’t trust the guy. I thought he was a show-off. He seemed more interested in impressing me with the latest gee-whiz treatment than in treating me appropriately.

A relationship with a doctor ought to be strictly professional, not personal, so I put whatever personal reservations I might have about him to the side. Yet a nagging voice inside me wondered if perhaps this man’s showmanship might lead to a less than desireable outcome. I was on the fence about seeing him again, or pursuing his “cutting edge” treatment, in part because I didn’t want to go through the trouble of shopping for a new urologist, and in part because mere intuition didn’t seem like a reliable measurement of a doctor’s professional aptitude.

As fate would have it, my intuition would be proven correct, luckily without the messy consequence of an undesired clinical outcome.

In what would be my last encounter this urologist, I was dressed in street clothes, and he was dressed, as always, in his suit and tie. I was carrying a parcel, a bright silk dress I’d purchased off the $50 rack in the back of the shop, which was nestled in the heart of the self-proclaimed “largest bridal district in North America.”
We both did a bit of a double-take, as sometimes happens when you run across a familiar person in an unfamiliar context. My husband and son arrived at the shop, having finshed their task of getting measured for tuxedos across the street. I introduced them to my “doctor” without spelling out his specialty for all the assembled would-be brides and bridesmaids to hear. And then the explanation for the urologist’s presence in a bridal shop became clear. A little old lady hobbled over to us on the arm of a lovely young college girl. The urologist introduced us to his daughter and his mother, who had just flown in that morning from Iran for a family wedding.
I couldn’t help it—I shared my delight at the bargains on the fifty dollar rack. “You couldn’t buy this much silk for fifty bucks! It’s Dupioni.”
As it turned out, the urologist knew all about the $50 rack. They were only there for the bargains. As nothing on the rack “carryies her size,” the urologist was planning on driving his mom to Goodwill to peruse the dresses there.
Goodwill? I wondered if his shopping plans weren’t a bit labor intensive. Why not pay full price at one of the 250 bridal shops within these scant two blocks? Hadn’t the urologist’s mother already had quite a day, flying all the way out to our fair midwestern city from Iran?
“She’s made of iron. Look at her.”
At this point, our party of two families had moved onto the street. My husband was halfway down the block, in a hurry to get to the car so he could deliver me from this unpleasant awkward encounter here in bridal shop purgatory. My son was halfway between his dad and his mom, tarrying in case I needed an arm. The urologist was keeping up with me, while the urologist’s mother, that stalwart traveler, was shuffling slowly but determinedly past the fifties-era storefronts, unaided by her granddaughter or her son.
At that moment, I made my decision. Dump him. The urologist wouldn’t wait up for his ancient mother, no matter how I tried to slow our pace. The man was too cheap to buy his mother a new dress for a wedding she’d traveled a long way to attend. If he could afford a plane ticket from Iran, he could afford a full priced dress.
My husband pulled up alongside us. My son opened the car door for his mother.
That is how it’s done.
When I waved goodbye to the urologist, I knew it was forever. The next specialist to weigh on the situation was a urogynecologist recommended by my local MS doc. She told me that if I were to continue to follow the advice of that urologist, I would end up in bad shape. Not that I needed a professional opinion to confirm …Mother knows best.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 269 other followers

Labels

One summer night, my husband and I were sitting on a picnic bench outside an ice cream shop in one of the more precious neighborhoods in Cincinnati, as our son and his buddies from Shakespeare Camp clowned around and blew off some post-performance steam. The flavor of the outing was pure vanilla. Let’s just say none of the boys would be a shoe-in for the role of Othello.
My husband said, “I don’t feel white here.”
My husband is white. Half white. He is also half Chinese.
He spent most of his childhood in North Dakota, except for a year in Pakistan. There were no Chinese kids, or other half Chinese kids, in Grand Forks, North Dakota. There were no Chinese kids, or other half Chinese kids, in Lahore, Pakistan. Of the two cities, Lahore was by far the more racially diverse.
In North Dakota, my husband-to-be was regarded as an alien. In Pakistan, he was regarded as an American. It’s hard to guess which must have felt more uncomfortable. Even back in the ‘70’s, Americans were not exactly beloved in Pakistan.
In any case, his identity as an American pretty much evaporated as soon as he returned to the good old US of A.
Chinese Americans can tell at a glance that he’s not Chinese. Just like white Americans can tell at a glance that he’s not white.
There is one state in the union where my husband blends right in. While vacationing in Hawaii, he may be offered a local discount via a top-secret hand gesture and a knowing smile. For an hour or two, he’ll be all puffed up. And then he’ll be offered a fork at a Chinese restaurant. Deflated, he’ll be forced to ask for chopsticks.
When we moved to Cincinnati, I think things got a little easier for him. (I could be dead wrong.) Race in Cincinnati is black and white. Black Cincinnatians and white Cincinnatians can all agree on one thing. My husband isn’t black. Which means, for all intents and purposes, he’s white.
That standard generally holds, unless my husband happens to be surrounded by unfamiliar white people. Then he’s not-white. And the question hovers, usually unspoken, unexpressed, except through second glances.
“What is he?”
On this vanilla flavored outing, my husband and I talked to the other Shakespeare parents about volunteer opportunities at the arts school, about an upcoming pool party at the swim and tennis club. We did not openly mock the affluent white street guitarist playing Bob Marley. Instead, we exchanged whispers and surreptitious snickers.
After our breathless son rejoined us, my husband went off to get the car. He wasn’t just being a gentleman. That particular evening, it wasn’t physically possible for me to get up and join him for the three block walk on a mild summer night.
Once my husband pulled up in front of the ice cream shop in our Element, the gig was up. It was my turn to be the outsider. I stood. My knees buckled. Our son took my arm. My knees buckled again. Once, twice, three times more before fair Hamlet got me to the car.
I, too, have a shifting identity. For me, relapsing/remitting multiple sclerosis (MS) means sometimes I can walk, and sometimes I can’t.
What am I?
I am disabled. I have a placard to prove it.
What am I?
I am healthy. I can swim a lot of laps.
Once—only once—a man yelled at me as I walked or ran, I suppose with undue vigor, away from my placarded car.
“You’re not disabled.”
What does he know?
Usually, when I run from my car, I am running to the bathroom, ‘cause I have an MS bladder, and I’ve really got to pee.
Sometimes, when I see an available handicapped spot, I don’t have to pee. My legs feel just a wee bit tingly. I entertain the notion of parking further back. If there is only one empty handicapped parking space, I may just keep the placard in the glove compartment, and park somewhere less accessible. Which doesn’t always turn out to be such a smart decision. I can’t tell you how many times I have parked politely, and then felt not-so-good on my return. I have had to lean on a full shopping cart as if for dear life, my legs in excruciating pain, as I’ve pushed the cart past two, maybe three, perfectly empty handicapped parking spaces.
So much for that.
My husband doesn’t get to choose when he is perceived as white. I don’t get to choose when I am perceived as disabled.
I look disabled when I’m in my wheelchair.
I look fit when I swim my laps.
If I didn’t swim, if I didn’t persistently lift very minimal weights, I would not be at all toned. I would not be able to blend right in with all those other white parents from Shakespeare Camp, if only for a while.
Oddly enough, my husband still hasn’t gotten over caring what other people think about our parking our car in a handicapped spot. He will often run around the car, and give an ostentatious show of offering me his arm, whether I need it or not. It’s like he’s broadcasting, “See, people, my poor wife is handicapped. That’s the reason why we’re using this spot.”
He clearly feels the pressure of the unasked question.
“What is she? Is she really handicapped?”
Screw that. I’m not dead yet. Don’t put me in box.
And while you’re at, screw, “What is he?”
Race is a construction.
So is disability. All of us have an uneven distribution of abilities. These attributes will wax and wane over time. We might as well relax about affixing any labels. They all peel off eventually.
What am I?
I am.
Who are you to ask?

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.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 269 other followers