The Agony of Knowing

In Ocrevus support groups I follow on Facebook, there are almost daily posts from members reporting “no new lesions” from their MRIs with smiley emojis and endless exclamation points. I’m always happy for them, and although I’m not the type who would post about it, I hoped to join their club after my scans last week. Honestly, I was expecting to, even as I simultaneously feared the worst possible outcome.

Unfortunately, I couldn’t write one of those triumphant posts to the group if I wanted to.

I checked for my MRI results yesterday afternoon when my students left, unable to wait until I got home. Seeing that they were finally posted, I braced myself and then read them slowly, several times, my frustration turning into deep despair as I cried in the empty classroom, closing the door to passersby. After I pulled myself together, I made my way home and cried some more with my husband.

There’s a growing lesion along with a few probable new ones on my spinal cord. A “prominent” new lesion on the left frontal lobe of my brain. A smattering of small new lesions on my right frontal lobe, scattered, I imagine, like happier things: freckles, confetti, fallen leaves.

I see my neurologist on June 3rd to talk about where we go from here. Dr. Z may recommend staying the course with Ocrevus and checking again in six months. She may recommend changing medications, though because I started with a relatively strong one, other options are few and come with pretty severe side effects. The fact that my insurance won’t pay for any of them further complicates matters.

But today, my friends, I’m done with crying. Crying was for yesterday, and it was necessary to give in to it then, to feel sad and helpless. This day, however, I’m focusing on all that is going well. I am able to drive and do my job and volunteer. I’m able to cook and play with my dogs. I’m walking every day, taking that time for myself, and after months of hard work, I’m able to go almost as far as I could before a debilitating relapse last summer. I haven’t had a relapse since then, each day without one its own shining miracle.

It’s gloomy and gray–that is to say, gorgeous–in Nebraska this morning. Soon, I’ll head to the lake to make my rounds, dodging the earthworms dotting the sidewalk, letting the rain fall on my face and my head and my back, my brain and spinal cord and their growing lesions tucked away safely underneath, out of view, my eyes firmly fixed on the horizon.

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The Agony of Waiting

I’m not sure there’s anything more frustrating that waiting for MRI results. I had brain and spinal scans done on Thursday to see if any new lesions have appeared since starting treatment in August, and I’m so, so hopeful they’ll show no evidence of disease activity (NEDA).

Waiting for results has never been a personal strength. There’s too much time to worry before deciding quite definitively that nothing is going to be okay ever again. Taking my comprehensive exams to earn my first master’s degree in college comes to mind. I had to read so much material about composition and rhetoric to earn my degree from the University of Nebraska while I was also enrolled in another graduate program at Iowa State, where I was studying Teaching English as a Second Language (TESOL). So spring break that year was spent on my screened-in porch reading for comps and smoking heavily. Smoking has been in my rearview for more than a decade now, but I remember my Camel Lights and Djarum Blacks fondly, how much better they made everything during those stressful times. Anyway, I had procrastinated on studying for months and had to dedicate my entire break to catching up. I read everything thoroughly, made charts showing connections from one concept to another. But when test day came, I sat for the three-hour exam and left knowing that I’d failed. Miserably.

The following week, after convincing myself that I needed to find a whole new career, I was awarded a “high pass” on my exams, an evaluation reserved for extraordinary performance. But until I saw those results, I was certain I’d blown it because I’d spent too many of my weekends living it up instead of studying.

When I first toured the bottom half of the Ames duplex I rented while attending ISU, my landlady showed off a small, built-in cupboard in the dining room, calling it the “china closet.” Much to her dismay, I made it my “liquor cabinet,” and it held my wine glasses and bottles of alcohol, including the quintessential drink of the early 2000’s: Hypnotiq. Yes, my friends, I was that cool. I threw a few parties for the other students in my TESOL program on the weekends I didn’t go home, but they were more interested in eating than drinking, while the latter had more of my attention at the time. Because I left most weekends to be with more like-minded friends, some of my fellow students called me “party girl.” I can’t tell you how flattering that was for a nerd not often mistaken for the kind of person found in the middle of life in the fast lane. Really, I was just a little faster than most of my peers in Ames, which honestly wasn’t very fast. The fact that I smoked cigarettes put me in a category for many of them that I reserved for the kind of person who injected drugs.

Anyway, I wondered if they were right as I waited for the results of my exams. Should I have spent more weekends in Iowa with my nose in the books? Had I spent too much time partying instead? By the time I seriously considered those questions, it didn’t matter anymore. The exams were over, and nothing I did would change the results.

Why can’t I understand that when it comes to MRIs? Especially since I can’t do anything to prepare for them?

To focus on something else, Alvaro and I had dinner and game night with my mom and my niece Abby on Friday. Yesterday morning, after making brunch together, Abby and I went for a lovely walk by the river. We took in all of the destruction from the flooding, looking for treasures as we passed sinkholes and areas where the sidewalk used to be. All we found washed up with the usual debris was a plastic mixing bowl for our efforts, but it was fun anyway. When we returned home, we made popcorn and settled in to watch a movie. That’s when I felt the fatigue hit. It’s hard to explain real fatigue to people who haven’t experienced it before, people who mistake it for just being really tired. It’s my body’s way of telling me I’ve overdone it and that I’m going to pay as a leaden feeling takes over my limbs, my brain, my eyes. My husband recognized it on my face when he got in from work and volunteered to take Abby home so I could rest. I felt better after an hour, fortunately, but even if my MRI results show NEDA, I am still feeling the effects of the damage MS has done already: the tingling on my left side, the fatigue, the permanently altered vision.

I’ve checked the patient portal about 75 times anyway, even though I know the MRI results won’t be posted for several more days, even though those results won’t really change anything. Doubt is creeping in, as usual, getting stronger by the day.

But there is hope in waiting, too, and I’m trying to focus on that hope. Maybe, just maybe, things are going to go my way.

Forgetting, Remembering

Sometimes I forget that I have MS.

Not for days—not even one, certainly—but for moments. There are moments when I feel normal again. Sometimes that feeling comes when I’m out walking, sometimes when I’m teaching a class, sometimes when I’m laughing with my family.

And then someone says something, or I see something or think of something that reminds me, breaking the spell, and I remember. How many times a day does that happen?

I started working when I was 14 in a nursing home. So much of who I am is rooted in the five years I spent there and what I learned from the people I met, people whom I didn’t know at the time would stay with me forever. Unlike many of the residents, Bill was still able to walk, and he made the rounds of the home several times a day in his smart but sturdy brown shoes, pants pressed, sweater vest over his plaid shirt, hair combed neatly. “Where is my wife?” he asked constantly, growing more agitated each time a staff member dodged him. “I need to find my wife!”

When he’d wander into the dining room, where I worked, I never could answer his question honestly. Instead, I’d ask if he’d like to rest with a cup of coffee, and sometimes he’d agree, taking a seat and looking around, bewildered. He wouldn’t finish half the cup before asking again, “Where is my wife? Can you help me find my wife?”

“Let’s get you back to your room,” I’d say, offering my arm. It seemed kinder to let him keep asking, to let him hold onto the hope that she might be in the next hall, around the next corner. Usually a nursing assistant would take over somewhere along the way. Depending on which CNA it was, how her day was going and how many times she’d had this same conversation already with poor Bill, sometimes she’d answer his question about where his wife was with an exasperated, “She’s dead! She’s been dead for years.”

And then I’d see it, the look of recognition as he brought his handkerchief to his eyes, a brief flicker of understanding and profound sadness. He lost his wife anew dozens of times each day.

What did I know then of such suffering? Just that it was heartbreaking, consuming. Although my situation is not the same, I understand it a bit better now.

MS doesn’t like to be forgotten. For the past week, the tingling on my left side has come back, in my toes, in my foot, in my fingers.

Still here, still here, it whispers. Still, still here.

On Root Canals and Roid Rage

I’m in the throes of a raging tooth infection. The gums around my bridge were irritated last week, and after having my teeth cleaned on Tuesday, I woke up in terrible pain on Wednesday. I knew something was wrong and went to see my dentist, Dr. A, that afternoon. “Well, young lady,” he started—he often calls me “young lady,” which is endearing as I’m swiftly approaching 40 and because we are about the same age—his face concerned, “we’ve got to get you in for a root canal.”

I was not exactly happy to hear it, but I took the news well.

The same could not be said about the day before, when I had cried in his office about a filling that needs to be replaced. It’s difficult to numb me enough not to feel anything, so I am often zinged during “simple” procedures involving drilling. I get anxious just thinking about it.

Putting aside the way teeth are weakened by root canals, I prefer them to fillings because I’ve never been hurt while having one. This will be my fourth visit (!) to the endodontist for root canal treatment. Halcion, a lovely sedative that makes everything a blur after it has taken place, helps tremendously. The doctor is gentle and kind and calls personally later in the day to make sure patients are feeling okay. I joke that I would marry him if I could, but he’s probably a bit put off by the kind of person who needs endodontic treatment so frequently. Oh, and he has a family. Oh, and so do I.

I wonder how my immunosuppression from Ocrevus has affected my ability to fight this infection. I began taking oral antibiotics after my visit with Dr. A on Wednesday, but the pain just kept getting worse. I was sobbing and trembling because of it on Saturday night before I finally broke down and called his emergency number. The antibiotics weren’t doing a thing, fevers coming and going, MS making my feet tingle again, so he prescribed steroids. Ugh, steroids. They are helping, but they come with the usual drawbacks: my face is red and puffy, sleeping is a challenge, and my emotions are on a short leash.

After work and a walk today, I tried to take a much-needed nap. Just after dozing off, I woke to the sound of my dog Maggie barking outside. I hurried downstairs to let her in and found my other dog Gus polishing off her bowl of food. My husband knows better than to leave Gus around food unsupervised because he waits for any opportunity to get a second meal, and he also knows better than to put either dog out in the yard and leave it there. It was 75 degrees and beautiful out today, Maggie’s favorite kind of weather, so for her to bark to be let back in means she’d been out there for a long time. Where was Alvaro? He was in the basement sleeping soundly, taking the nap I so desperately needed. I tried not to overreact, but that kind of carelessness and selfishness sets me off on a good day, never mind one where I’m battling with steroid-induced emotional lows. He at least had the good sense to apologize for screwing up, which might be why he’s still alive.

I’ll keep riding this steroid rollercoaster along with antibiotic treatment until Wednesday morning, when my root canal is scheduled. And while I’d at first felt bad that Alvaro was going to have to get up early on his day off to take me to the appointment, it seems fitting after this afternoon. I hope the Halcion frees me from roid rage, the root canal frees me from pain, and all is well in the world again.

Cheers to Thirteen Years

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Alvaro and I never made it out of my apartment for our first date, just kept drinking the bottle of wine he brought while listening to music and getting to know each other. No distractions, no phones–it was sincere and sweet. A few days later, he asked me to meet him because he had “something important” to tell me.

I arrived before him at my favorite coffee shop, ordering a double espresso and settling by the window. He had been interviewing for internships that day, so he looked handsome in his khakis, blue button-down shirt and sports jacket. A popular study hangout for nearby med students, it was crowded, but we found a table for two in the back.

Alvaro was visibly nervous as I tried to make small talk, chatting about my new classes and students at the college. Finally, I asked what was up, wondering about this important thing he had to share.

“I just don’t really know how to say this,” he said, eyes darting around the room, his voice low so no one else could hear. He stared at his coffee for a few moments before taking a drink, and that’s when I began to worry. Does he lead a secret life of crime? Is there a fiancé or wife back in Chile? Love children I should know about?

“Okay,” he stumbled, finally making eye contact. “I need you to know something about me.” He paused again to fiddle with the button on his jacket. “I’m a very serious person. I’m not about wasting time. And I know what I want and don’t want, okay?”

I nodded, having no idea where he was going. He continued to rant about his seriousness. Finally, he got to the point.

“I guess what I’m trying to say,” he said, clearing his throat a few times and reaching awkwardly across the table for my hand, “is that I want you to be my girlfriend.”

Not since elementary school had anyone put it quite like that. Be my girlfriend. I laughed because it was so unfamiliar and charming. Mr. Serious didn’t know how to read my laughter. He continued, saying that he thought I was an amazing woman, that we could have something special together.

“I’m not interested in a halfway thing where we see other people,” he insisted. “It’s all or nothing. No in between.”

I nodded again, taking it all in. After years of dating much more casually, the prospect of an old-fashioned early commitment was interesting. Why not see where this goes? The part of the story Alvaro doesn’t like is that I had a date to see a movie with another guy later that week. I canceled it, of course, committed to seeing where this girlfriend thing would take us.

Exactly thirteen years later, this afternoon we had a small celebration of our strange anniversary in the same  place. Well, it’s not the same place, really; what was a coffee shop when we were in our twenties is now a German bar in Alvaro’s forties (I’m not quite there yet, thank you very much). Two-liter boots of beer and pretzels are served instead of lattes and scones, but these same bricks bore witness to the beginning of us.

The space has changed dramatically. So have we. But today over drinks, I laughed with my husband and glimpsed the 27-year-old version of him, the man I was going to fall in love with, remembering what that felt like. I’m still very much his girlfriend, and we toasted to all the things we didn’t know were ahead of us then and the things that will follow in the years to come, committed to facing them together.

Cheers, friends!

Sisyphean Musings

Picture this: my first semester in college, 18 years old, an idealistic, curious young woman in a wonderful new world. Of my first semester courses, Intro to Literature was my favorite. We were introduced to great works, poetry and short stories and Ralph Ellison’s Invisible Man. They’ve remained in my heart ever since. We also had a crash course in mythology, and no story captured my imagination more than the myth of Sisyphus.

Sisyphus was a king, both cruel and incredibly clever. His misdeeds in life are numerous, but his story really picks up when Homer tells us that after tricking and trapping Death in his own chains, all deaths came to a stop in the world. Ares brought Sisyphus to Hades, where he conned Persephone into returning him to the mortal world, promising he’d come back in three days. He didn’t, of course, living out the rest of his years to old age, enraging the gods again. Sisyphus even thought himself smarter than Zeus. For these and other terrible acts, Sisyphus was doomed to an eternity of punishment in the lowest part of the Underworld, forever pushing a boulder up a steep hill; when he was almost at the top, it would roll all the way back down, and he would have to start over again. He’s at it still, if you believe the myth.

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I also began getting what could best be described as migraines in my left eye that year. They would come on suddenly, feeling like someone had stretched my eyeball from its socket before punching me hard. It was like a pulsing bruise, made worse with each eye movement, and the pain was considerable, though I looked “normal.” I saw a number of doctors, an ophthalmologist, even a neuro-ophthalmologist, looking for treatment. After a CT scan and months of bouncing from clinic to clinic, I was finally diagnosed with idiopathic orbital inflammation (IOI) and wished luck with it. No treatment. No relief. After two or three years of that pain coming and going, it finally went away for good.

Or so I thought. It returned out of nowhere last January, about 17 years since I’d last experienced it. I recognized the pain immediately and suffered with it for a few days silently, hoping it would go away once more. Eventually, it did, but so did most of my vision in that eye. And so my MS journey began with a diagnosis of optic neuritis. My neurologist believes that although I probably didn’t have MS in college, the IOI was a harbinger of things to come.

I’ve found myself thinking about Sisyphus more often since MS made itself known in my life. There are certainly times when going through relapses and steroids and treatments, struggles and setbacks, feel Sisyphean in both their futility and never-endingness.

You may be wondering, doomed as Sisyphus was, who among us wouldn’t try to end her suffering by throwing herself under the boulder right before it rolled back down? Albert Camus uses the story of Sisyphus to examine that very question, saying, “There is but only one truly serious philosophical problem, and that is suicide. Judging whether life is or is not worth living amounts to answering the fundamental question of philosophy.” To live means inevitably that we will die, so life is absurd, but we can find meaning in that absurdity, and in doing so, beat the system.

In The Myth of Sisyphus, Camus imagines Sisyphus finding purpose and satisfaction in his task: “The struggle itself towards the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.” This is a bit too optimistic an interpretation for me, but if you have to face the impossible and do it forever, it is nice to believe that Sisyphus finds meaning and fulfillment in doing it.

After all, is any effort futile if we can find meaning in it? My own philosophical quest is not whether to live my life or choose to end it, but rather how to find and create meaning in the living. This has come into sharper focus since my diagnosis, and I understand better than ever the beauty found in the obligation of starting all over again once the boulder has fallen.

I’ve been struggling with fatigue since my treatment three weeks ago. The same walk I was able to complete without great effort the day before became a mountain the day after and for many days after that. I was exhausted after exercise, after work, tired and cranky. I think I finally turned the corner yesterday, walking a little farther than I had since my treatment and still going about my day with normal energy. It included a nap because I’d had an early appointment with my PCP, but this was an indulgent nap, a pleasure, not one of necessity.

It’s a rainy day in Nebraska, which is my favorite weather, so soon Maggie and I will hit the trail. A new quarter just started at the college, and I’m appreciating the beginnings it brings as we look forward to spring. It’s the perfect time to further ponder existential questions, but I’ll leave it there. I’ve got this boulder, you see, and it isn’t going to push itself.

MS Awareness Month

Welcome to March and MS Awareness Month, my friends. Orange, unfortunately, is the color of MS awareness. The only worse choice would have been yellow, and I can’t wear that or orange without looking jaundiced. “Oh, that one must have MS and a liver disease,” people would whisper. “Poor thing.”

Maybe it’s better that the color of MS awareness is one I don’t really care for. That means I won’t be thinking of it while putting on a favorite shirt or necklace. I think about my having MS every day, several times, of course, but there are still moments where the awareness of it hits unexpectedly, sharply, like when I see a picture of my aunt in my Facebook feed and find myself suddenly and unrelentingly in tears. She passed in 2015 because of complications from the disease.

People who have MS are permanently aware of it, of course, as are their loved ones. And thanks to Selma Blair, more people in general are aware of it lately as well. I’ve heard from a few friends since her interview aired, many of them asking about what MS is like for me. I welcome those questions and am always available to answer them, but as Blair pointed out, MS is a “snowflake disease” in that it doesn’t affect any two people exactly the same way. That’s what makes it so difficult for people to understand. Full awareness of MS requires knowledge about of a multitude of symptoms, treatments, approaches, outcomes. The complete picture is almost impossible to capture, even for people who live with it each day.

After the stunningly beautiful images of Blair posing defiantly in her flowy dress at the Vanity Fair party, holding her sleek black cane and looking incredibly powerful, I wasn’t prepared to hear how affected her voice is presently because of spasmodic dysphonia. I cried through Blair’s interview the first time I watched it, feeling her struggle, and then I pulled myself together and watched it again, this time admiring her composure.

 

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Tonight, I’m going to dinner and a play with a dear friend—a sister, really—whose mother has lived with MS since the 1970s. She has provided the kind of support almost no one else can through this transition. We commiserate about well-meaning people who make suggestions about how to deal with the disease, and I laughed when she sent a card before my infusion that said: “How about this: the next non-doctor who thinks they can cure you gets smothered with kale.” Yes, please.

Given that my awareness of MS is at an all-time high, I’m approaching this month from a perspective of increased awareness of and gratitude for the ways people have stepped up for me since this chapter began.

You know, when I think about orange as the cheerful representation of the love and support I’ve received, suddenly it’s not such a bad color after all.

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