Losing It In Japan

Tags

, , , ,

It was my second week in Japan, and I was visiting my boyfriend, Donovan. He had a “work party” at a karaoke bar, and we were expected to attend. My six week long visit had become a test in tagging along and holding it together. But I was starting to fall apart.

After only twenty minutes, the walls in the Japanese karaoke room suddenly seemed to be collapsing around me. A room full of people that I didn’t know surrounded me, and their stares were piercing. My chest was tight. The noise was radiating through my bones, my joints, my brain. I needed silence. A moment alone.

I retreated to the bathroom, and I was struck by how bare it was. It was cold, clean, precise. My chest heaved, and I stood directly in front of the mirror, examining my reflection. Why am I here? What I am doing? He doesn’t even love me anymore. My tears started flowing uncontrollably.

I watched helplessly, holding a paper towel to my right eye, and then my left. Black streaks of tears stained the white paper. Get a hold of yourself. Desperate not to be discovered, I headed into a stall. I needed a paper bag, something to breathe into. But I didn’t have anything except for a singing toilet. Maybe if I sat on it long enough, it’d play me a lullaby.

I sat, paralyzed. There was no way out of the stall. The walls were there, the lock was locked, the air was suffocating.  I was trapped by own mind. It refused to send signals to my limbs to get up, to flee. Stay, it said. Stay here, where it’s safer.

I heard the bathroom door open and my name being called. “Lori?” It whispered. “Are you in here?” It was Amy.

Move, mouth, say something. Say,”Yes, I’m here.”

Silence.

“Hello?”

Speak, damn it.

“Yes,” I choked out. “Here.”

“Donovan sent me in to check on you,” she said.

“Yes, out soon. Just…” I wasn’t even making sentences.

Her heels clicked across the floor, and the door closed behind her. It wasn’t out of concern that she’d visited me. It had been a requirement. She didn’t want to look like an asshole, not in front of Donovan. Even then I knew she didn’t care how I felt. She probably hoped I’d flushed myself down the toilet. I imagined trying it … ending up in a hellish waterslide that ended with me smelly, soaked, vomiting, but free from the constraints of Japan.

Now what?

Opening the stall, I went back to the mirror. Horrid. I looked pale, makeup free, ugly. I hated myself. I hated him. I hated Japan.

Breathe.

Desperate, I found the drink I’d carried into the bathroom with me, what seemed like hours ago. I downed it.  

Returning to the karaoke room, nothing had changed. I expected to see people, frozen in time.  But their lives had continued on despite my near death experience. Dishes clanked, drinks flowed. But mostly, their laughter was magnified by my misery.

“You, ok?” Donovan asked.

I nodded, taking his warm sake into my clammy hand.

Goodbye, mind.

I had a role to play – that of the cool, fun girlfriend. If I fell apart in front of them, it’d be all over. I had to save my breakdowns for bathroom stalls and mornings in bed alone. For now I had to hold it together, and what better way than with mind-numbing booze?

Teaching Moments & MRIs

Tags

, , , , ,

On Friday I received good news. My MRI showed no new lesions. The me of last March was indeed the me of today. Funny how images of the brain can track disease, but not knowledge.

As a teacher I am always reminded to appreciate and embrace “Teaching Moments”, best defined as a moment when a student “gets it”, regardless of how you get them there.

This weekend I learned that my MS could be frozen. Yes, I experienced a moment or two of regret and longing that it couldn’t have been frozen sooner. But then again, if it’d been stopped as soon as it had started, how would the (immeasurable) knowledge have had time to seep in?

That evening I celebrated with my husband, friends, and family. I had a few drinks, a taste of cheesecake, a tuna melt, and a few rounds on the roulette wheel. I felt carefree and alive. I knew the MS was still there, but with the help of Gilenya, we’d tamed her.

For the first time since I was diagnosed, there was clear proof that I’m doing the right thing. Sure, I would have loved to hear that a lesion or two had actually disappeared, as some patients have reported with Gilenya, but I’ve never been a greedy person. Perhaps that’s a long-term goal that I can place neatly onto my growing Bucket List. Afterall, if I’m going to be here, alive and well for the next few decades, I’d like to keep that list interesting.

On Saturday evening my best friends talked a bouncer into letting us into a club, by name dropping. It’s so not me; in fact, it’s not even them. But when you have a name to drop, well, you use it for the sake of having knowledge to flash around like some fancy badge.

“We’re here to see Walter,” my friend Jeannie declared boldly, at the front of the VIP line as the rest of us cowered behind her long legs and blond hair. “Sure,” said the bouncer without missing a beat. “How do you know him?” And then, my favorite moment – Jeannie saying, ”We go way back.”

She’d pulled it off – effortlessly. We’d never laid eyes on the guy, not to mention even heard his name before that evening. But the ropes came up, and we hastily filed into the club, past the line of eager club-goers-in-waiting.

Inside it was loud, crowded, hot – everything you’d expect from a club. And soon enough a guy approached our group, saying to me specifically, “So, how are you girls tonight?” I went into survival mode, avoidance mode, annoyance mode. “No,” I said quickly, “You see, we’re just here to see Walter.”

And then his response, “Yeah, well I bet Walter’s a Fa*g*t”. My heart stopped. My teacher instinct kicked in. It ran through my veins, even when my veins were soaked with vodka, cheesecake, and contrast dye.

“Stop,” I said to him firmly. “Listen to me. You don’t say that word, do you understand?”

Stunned, he looked at me, not sure what to make of my response. And then he folded, “Well, I know…I mean, I’m a Christian, and I almost never say that word,” he rambled in confession. “Well, you don’t almost never say it,” I replied, “You just never say it.” 

Yelling into my ear he replied, “Yeah, you’re right. I’m sorry.” He was genuine enough, and we parted ways. He returned to his original goal and I returned to my celebration.

Moments later he was groping some girl he’d just met, and I wondered what his pick-up line had been the second time around. It didn’t matter; what did matter was that I’d used the moment to teach. Maybe this time I hadn’t taught him about MS or the struggles that I face because of a disease that’s misunderstood, but I taught him something about people and respect, no matter what the circumstances.

 

I Failed “Walking Club”

Tags

, , , ,

So, I joined a “Walking Club” at lunch, which consists of three older women in their 40s-50s and myself (as of today). One lady is overweight but had a baby about 6 months ago, one is a basketball coach, the other usually walks slumped over, like a hunchback. I thought I’d fit in nicely :)

I started out optimistically. I figured we’d chat, I’d make some female friends at work, and even if they were older, maybe they’d have wisdom to share. I laced up my sneakers and put on my trusty yoga pants.

As we approached the track Coach looked at her watch. Uh-oh, not a good sign, I thought. Then she looked at the lines on the track. “We always start timing on the green line,” she said. That’s it, I thought, I’m screwed. And I was.

http://ahealthywifeequalshappylife.blogspot.com

I think I said two words to them before they were ten feet ahead of me. There were slight pains down my legs, and I realized I should have stretched. I hadn’t been to yoga in two weeks because of my cold and stomach flu. My legs were stiff, achy, and quite unaccommodating.

I watched as the women in my club became specks ahead of me on the track. They swung their arms back and forth, they laughed. I walked, holding my water bottle, and wishing I’d brought my iPod. I had it in my hand and then put it back into my workout bag thinking, I don’t want to be rude…

Turns out I even fail in this demographic! My legs hurt, my hips started popping, and by mile one they had eventually lapped me.

I figured I should have just walked by myself at the end of the day by the ocean. I mean, isn’t it an unwritten rule that you kinda slow down if someone joins the club and can’t walk very fast? Especially if said person said she has MS and struggles a bit with exercise? Sigh. It’s MS Awareness week. Yippee.

Orange is the New Black.

Tags

, , , , , ,

It’s arrived – MS Awareness week. The question is, what are you doing to help change the way MS is perceived? What can we do to stop that blank stare from piercing our insides when we tell someone, “I have MS”?

While I’ve been least impressed by Montel Williams, I have been most impressed by the new campaign FearlessMS.org. It’s everything I could have asked for, and more. Finally, finally, someone gets it. This model, wearing orange, is exactly along those lines. She is young, fun, and sporting the hideous color selected to represent awareness of a hideous disease. If I have to wear orange, I might cry.

There are many proponents of MS working diligently each day to raise funds and to raise awareness. So why is it that most people in my age demographic 20-40 are so clueless about MS? Well, the first reason is probably that disease isn’t quite in their vocabulary unless it’s in reference to a parent or grandparent. But another reason has to do with image. What’s the image of MS? Old. Outdated. Wheelchair. Wrinkles. Walker. What’s the reality of MS? FearlessMS.org‘s got it.

The reality is, most people diagnosed (200 per day in the US) are women in their 20′s and 30′s who may look fantastic. Our goal is to keep ourselves looking this way. Today I peeked at Montel’s Facebook page to see what he’s doing for MS Awareness Week. Currently, I have nothing to report. Except the photo of him backstage at QVC is quite telling. He looks pretty rough. He has what I call “MS eyes” – pale, drawn, circles. He did mention a flare up this week, so maybe that’s why. Don’t get me wrong, I’m not bashing Montel. He has done more for MS than any other celebrity, including a Montel Williams Foundation (that most people have never heard of). I just think we (all) could be doing more. Afterall, our lives are at stake.

So, although orange is like nails on a chalkboard to me, I’ll embrace the Orange if you’ll embrace the new advertising campaign for MS. FearlessMS.org

Happy MS Awareness Week? No, that’s not it … Embrace MS Awareness Week.

Visit to the MS “Specialist” – Chapter Excerpt

Tags

, , , , , , , , , ,

When my name was called, we went into the patient’s waiting room together. It looked like any other doctor’s office. I’m not sure why I expected it to look any different. Maybe it was the word “specialist” that had been plastered into my consciousness soon after the diagnosis. “Oh,” our friend had emphatically said, “You need to see a Specialist, right away.” The word specialist received the emphasis. It was as if they’d said God. “You need to see God, right away.” Yes, I’d thought, please pencil me in.

So when the doctor entered, I was eager, even though I’d dreaded the trip. I looked at him with desperation, ravenously devouring his slight expressions and few words. But he looked like any other doctor, hardly divine, in plastic 70’s rimmed glasses, a wrinkled button-up shirt and a putrid tan sweater-vest. For Christ’s Sake, this was my savior?

Pulling up images of my brain on his laptop, he confirmed my diagnosis coldly, with the precision of a scalpel slicing flesh. And he calmly counted my lesions on the screen in black and white. Each number pierced my insides, causing Multiple Scars that he could not tack onto his list. The brain lesions were labeled black holes; they were places that were damaged, that they didn’t expect to recover. Sickened by the term, I suddenly understood why I felt like parts of me had been lost, why facts and words were suddenly inaccessible. It hadn’t been a figment of my overactive imagination after all – small portions of my brain had literally vanished into thin air; it was being scientifically documented right before my eyes.

“Let’s do the exam,” he said after he’d finished his counting.

I sat, restlessly fidgeting on the thin white tissue paper that coated the table beneath me. I had no idea what to expect. My parents looked at each other, ready to leave the room, assuming that the examination would require the removal of clothing, the use of some advanced machinery of some kind. “You can stay,” he’s said, sensing their uneasiness. And then, he began to conduct the exam.

“Follow my pen with your eyes,” he said, moving it from side to side. “Put your arms out. Close your eyes and touch your index finger to your nose.” He tapped each of my knees with a tuning fork, watching my knees give a slight response. Nodding, he asked me to remove my shoes and socks. On the bottoms of my feet, he used a broken wooden tongue depressor. “Scratchy?” He asked, rubbing it up my right foot. I nodded in disbelief. “Scratchy?” He asked again, sliding the wood along my left foot. Mouth agape, I nodded, half expecting some sort of calculation to be digitally sent from the tongue depressor to his notebook. But of course, it wasn’t.

“Stand up,” he said at last.

“Walk with one foot in front of the other.” I tried to, but I felt wobbly. I hoped he didn’t ask me to recite the alphabet backwards. I kept thinking that if I had been pulled over at a DUI check point, I certainly would have failed.

“Mmm.” He scribbled something into his notebook.

During each test, he barely reacted, like a robot, taking measurements and filing them into his mental database.

At the end of the visit, he gave me Post-It notes with Vitamin D and Swank Diet scrawled across them. “We’ve found these might be successful. You can try them if you want,” he stated coldly. His lack of enthusiasm and definitive answers was deadening. Not only was my body damaged, but my soul was becoming damaged as well. The pure simplicity of the exam began to infuriate me. I’d assumed incorrectly that anything could be solved in the medical world with the right combination of intelligence and access to “modern” medicine.

Teacher in a Maze

“Hester looked, by way of humoring the child; and she saw that, owing to the peculiar effect of this convex mirror, the scarlet letter was represented in exaggerated and gigantic proportions, so as to be greatly the most prominent feature of her appearance. In truth, she seemed absolutely hidden behind it (Hawthorne, The Scarlet Letter).”

One of the worst days of my teaching career had nothing to do with teaching. It had to do with learning. There was a student in my freshman class, and she was beyond shy. She was mute, just about 99.9% of the time. She was a pretty girl, with long blond hair, and a thin bone structure. I wondered why she had no friends, never spoke in class, barely replied when spoken to. She got under my skin a bit. Not because she was so shy, but because I couldn’t reach her.

During an informal meeting with a guidance counselor and two fellow teachers, I learned the cause of Sarah’s silence.

The counselor said in a hushed tone, one reserved for this purpose, “Poor girl, her mother is dying from MS.”

My heart and lungs and stomach seemed to plummet to the floor. It had found me, even here. “Her mother can’t even speak, her whole mouth is numb, swollen I guess. They expect her to die soon … poor Sarah.”

Fight or flight? I wanted to crawl under the table, shove my head into the rug like a human ostrich. I wanted to throw up my insides, sprint to the parking lot, and never return. But instead I sat, silent and paralyzed, looking down at my gradebook. How could I, of all people, have missed this? How could I have questioned her silence? Her defeated stare? I felt like a traitor to Sarah, and more importantly, to her mother, who needed me to understand. I’d failed them both. When you have a disease that others fear, it causes you to fear it even more violently. As if their fear multiplies your own. People serve as fun-house mirrors, reflecting your disease back to you in exaggerated proportions. Never allowing you to let your guard down.

Realities of Rebif

Tags

, , , , , , ,

(Chapter Excerpt – The Interior of Their Hearts)

Once I started feeling horrible enough, I began to reconsider the Rebif. It was sitting at the bottom of our refrigerator, and at last, I knew it was time. I called the doctor’s office, and I scheduled my training. I knew there would be flu-like symptoms. The directions were to start off small and increase the dose each week. Like the Copaxone, the Rebif had an auto injector, which meant that you load a plastic sling shot with a needle, press a button, and wha-la, your medicine is slammed into your unsuspecting flesh.

I didn’t tolerate the Rebif very well, and I kept feeling like my chest was constricting. I had the stomach flu almost every day. But I didn’t want to give up on the new medicine so easily. Eventually, I ended up manually doing the shots so that I could control the dosage. You never think you can give yourself a shot with a needle 5 inches long, until you have to. Then you do it.

If there’s one thing people should know about MS, it’s that those who have it also have a low tolerance for bullshit. It’s probably true of any life-altering illness. I already had a low tolerance for it, but it puts things into a whole new perspective. You see, I’m sitting at the party, thinking about plunging a needle into my thigh, whether the ice packs are cold enough, whether it will bruise too much to wear a bathing suit, whether I’ll make it home early enough to get ten hours of sleep, how long I’ll be able to walk. So the shallow conversations about makeup and beer tend to lose my attention pretty quickly.

When you have to make decisions that can save your life on a daily basis, you grow up pretty quickly. I try to forget about them, but they creep back in, reminding me of my medicine waiting at home, of the refill at the pharmacy, of the doctor’s bills stacking up on the counter. Yeah, it hurts to plunge that needle into my skin, but it hurts a lot more to see what happens if you don’t.

Follow

Get every new post delivered to your Inbox.

Join 820 other followers