Dr. John McDreamy

(Day of Diagnosis – 12/5/06)

When I finally was transferred to a room, I met Dr. John. He was a kind man, who was quite handsome and funny. But in the end, he was also quite useless.

“Please tell me if I should call my parents,” I said to him. “They don’t know I’m here, and I don’t want to worry them if I don’t have to.” They’d been helping me move for a week, and after all, I was an adult who didn’t need her mommy and daddy just to be told she had a pinched nerve.

Studying my chart, Dr. John told me I was going to be given a spinal tap. Then handed me his cell phone.

He had trained to be a brain surgeon, he told me as I lay on my side waiting for the spinal tap. Ok, I said to myself, then you are like McDreamy. I was obsessed at the time with Grey’s Anatomy. Kelly and I watched it every week religiously with a large bottle of wine.

He had two residents in white following him around and being very Meredith and Christina, but much less intelligent. Meredith said she needed protection in case the fluids went flying during the spinal tap. I wanted to hit her just then. She was uncomfortable and clueless, and maybe a lot like me.

But today, this bothered me. It wasn’t endearing to have a girl who reminded me of my fear standing behind me during the spinal tap. The first one of my life.

“It’s probably a virus in the spinal area,” said Dr. John carelessly. “They come and go, it’s nothing to freak out about. We won’t be shoveling dirt over you anytime soon. You look like a million bucks.”

Yes, Dr. John really did belong on Grey’s Anatomy. Who tells a 27-year-old panicked girl anything about shoveling dirt in an emergency room with numb legs?

Lying on my side, the one that reminded me of Meredith, was giggling uncomfortably as the doctor prepared the needle that would be inserted into my spine. Having a high tolerance for pain, I wasn’t too afraid. But when the needle began to sink into nerves I felt a sensation of suction as the fluid was being drawn from the small space between my the bones of my spine. The pain was intense and it took all that I had not to scream out in pain. I was suddenly so petrified of moving that not a peep escaped my mouth as simultaneously I let out a silent shriek in my mind. The needle was at last removed and I saw a brief glimpse of the fleshy colored fluid with a slight red tint as it was hurried away into a plastic baggie for testing. A baggie that had my name stuck to it with a flimsy paper printed label.

spinal tap

Just as the horror of the test was complete, I saw my mom, dad, and sister lingering in the hallway.

“Hi,” I said a bit shyly, wrapping my baby blue hospital gown around me a bit more tightly. I felt suddenly exposed, like I’d been discovered sneaking alcohol or candy from a locked cupboard. But really I was just trying to hide my potential diagnosis.

“When were you going to tell us?” my mom asked me, incredulously.

“Well, I didn’t want to worry you,” I said in a voice that sounded so small I wondered if it reached her.

“Worry me?? So you drive yourself to the Emergency Room?” she asked in shock.

“Well, I guess I didn’t think it was a big deal, and then Dr. John said…” my voice trailed off, sucked into the emptiness of the hospital walls and plastic containers, absorbed into the cold tile floor and the glass viles, waiting to be filled with blood.

Dr. John, as if hearing his cue from off-stage, entered stage left. Shaking my parents’ hands, he said to them reassuringly, “It’s not MS, so you can get that out of your heads right now.” They were words that I had never even considered, and to this day, still haunt me.

Chapter One Excerpt

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Chapter 1: The Teacher by the Sea-Side

“The tendency of her fate and fortunes had been to set her free. The scarlet letter was her passport into regions where other women dared not tread. Shame, Despair, Solitude! These had been her teachers, – stern and wild ones, – and they had made her strong, but taught her much amiss (Hawthorne 137).”

I told a little white lie. I had money in the bank, and all I really wanted was space and time to think. I couldn’t do it at my parents. I couldn’t think. And after our trip to Newport, I knew I needed to keep living for now, even if I was dying.

I called The Water’s Edge, a swanky hotel on the water in Westbrook, Connecticut, and I booked a room for $400. It was certainly a splurge on a teacher’s budget, but the walls of my parent’s home were closing in on me, suffocating any life that was left.

I packed a bag and told my parents that I was having a girls’ weekend with my best friends. I texted Karen, Jeannie, and Kelly. But I didn’t know if anyone would join me.

When I arrived to the hotel on that beautiful sunny April day, my spirits were finally brightening.

“Checking in,” I smiled at the desk clerk. “Yes, Ms. Rizzo?” he asked, examining my license. “I see that you have a partial water view. Would you like to upgrade your room for an additional $150?”

“No,” I said quickly, “That won’t be necessary.” I didn’t want to be wasteful. I figured a partial view would provide enough calm without totally emptying my wallet.

But when I saw the room, my heart sank. The partial view was literally a sliver of water that I could see through two buildings if I tilted my head in a specific direction. This just wouldn’t do for my ultra self-indulgent getaway.

I walked back through the extravagant lobby and back to the desk clerk.

“Hi,” I smiled. “Yeah, um, that room, there’s barely a view at all.”

“Well, let’s see here,” he said, typing furiously into the computer.

“We do have one ocean view room with a balcony. It’s an additional $200 per night. Are you interested in that instead?”

“Yes,” I said. Sure it was expensive. But $600 for some peace and quiet with a balcony and water view would be worth it.

And it was. The ocean stretched out before me the moment I walked into the room. I opened the balcony doors and felt the misty breeze on my skin. Yes, this was worth any amount of money at this moment. I sat peacefully on the balcony for a moment before deciding to unpack my things.

I placed my Autoject needle on the bathroom sink. I plugged in my iPod docking station and set my iPod to my angry girl mix.

A knock at the door was a welcome addition to my party for one. I opened the door to find Jeannie and Karen waiting with smiles, wine, and luggage.

“Surprise!” They announced in unison. “We came to stay for the night!”

Just as we were settling in, taking in the scenery, sipping on wine, my cell phone rang. It was a 928 number. Flagstaff. I paused the iPod and stared at the phone.

“What?” Jeannie asked.

“It’s Flagstaff.”

“Well, answer it!”

“Hello?” I asked cautiously.

“Hello, is this Lori?”

“Yes, speaking.”

“Hi, I’m calling you back about a place for rent.”

“Oh … um, I won’t be needing it. I was hoping for a teaching job, but it just didn’t work out.”

“Really? What kind of teaching job?”

“English. I teach high school English.”

“Well, actually I ask because my husband teaches at Flagstaff High School, and they have an opening for an English teacher. If you want to rent our place, I’m sure he can help you with the job.”

“Really?” My mind raced. Wasn’t this my dream come true? A nice place to rent, ans a chance at the job I’d been trying so desperately to capture for years? Since when did job opportunities suddenly fall into place? For that matter, since when did anything fall into place?

But it felt wrong. I didn’t have Donovan’s support. Actually, I didn’t seem to have him at all. And if I moved there on my own, I’d just be hanging on to something that no longer existed. A shadow of our former relationship. A shadow of my former self. I must have learned something from all of this.

“Well, thank you,” I said as Jeannie watched intently. It was as if she knew I was making a life altering decision just by the tone of my voice and my hesitation.

“I really appreciate the offer, but I’ve just decided that I’m going to stay where I am on the east coast, with my friends and family.”

I hung up the phone and stared it, knowing full well that I had just closed a chapter in my life.

I would no longer have to apply for each and every job opening in Flagstaff. I could focus on living where my roots had been planted. I wouldn’t have to keep in touch with family by phone and text. After all, they’d earned a place in my real life, and Donovan had not. He was the one who deserved the texts, if he deserved anything.

But the question of where I best fit out east still lingered. Should I settle down in Westbrook, a small community with beaches and shops, but little else? Move to Boston where at least I could rely on Karen? I had already explored Charlotte. I guess that was still an option. But staying at home was not.

Losing It In Japan

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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

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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”

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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.

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.

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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

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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.

Does Exercise Help Your MS?

I have been trying to workout again regularly, but today I am just too tired. What role do you see exercise playing in MS?

How Effective is Your MS Medication?

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