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.

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Realities of Rebif

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(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.

The Recognition – Breaking Bread (Part 3)

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“He presented the cup to Hester, who received it with a slow, earnest look into his face; not precisely a look of fear, yet full of doubt and questioning as to what his purposes might be (Hawthorne).”

This was my day, if I wanted an apology, why didn’t he just give it to me? Sure, he’d apologized on the phone, but it was different in person. It was real.

And I didn’t get one.

“I need to use the restroom,” he said, getting up.

When he returned the tension was still thick.

“Well, I haven’t eaten so I’m going to order something,” he said. It wasn’t the lunch I’d had envisioned. It didn’t matter. I’d lost my appetite.

“Go right ahead,” I stayed cool, swirled my glass of Jager.

He went to the bar and ordered.

“So,” he said when he sat back down, “…are you meeting up with your family or something?”

“You can leave anytime you want,” I fired back. “You don’t have to stay here. I’m fine on my own.” And I was. Sure, I had Aryn, now. But I didn’t have anyone then. It was the having no one that had prepared me for Aryn. It was the having no one that prepared me for this very day, this very conversation.

“Whoa, I didn’t mean it that way,” he said defensively. “It’s just, well I told Amy that we’d meet at 3:15 so –“

“So that means 4 o’clock, right?” I shot back another round of ammunition. I was so sarcastic even he had to think about it. I never spoke to him that way. He was blindsided.

“What? No…”

“Well I just figured since you were forty minutes late…”

She was more important maybe, but she didn’t have his heart. Neither did he. He’d lost it somewhere, maybe in a moving box or under a bed. Maybe he’d buried it late one night with a flashlight in the yard.

His chowder arrived with a small cutting board of warm bread and butter. “You can have some of my bread if you want,” he said. It reminded me of the text he’d sent months after we’d broken up: “You can have my babies if you want.”

“No,” I said, “I don’t want your bread.”

“You should have some. You’re drinking.”

“Look, I’m not eating it.” It didn’t matter what I was controlling, as long as I was controlling something, as long as I was drawing boundaries: across the table, around the bread, in the air. And to think I had imagined us dining together, literally breaking bread just hours before, and now I couldn’t stand the sight of it.

He didn’t care if I was drinking. He didn’t care what I ate. He didn’t care if I was wasting away in my bed, living in fear of injections, barely able to lift my head off the pillow. He didn’t care then, and he had no right to care now.

Gilenya Users, Hang in There

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A couple of weeks ago I was browsing the National MS Society website for news on upcoming research, and I discovered the death of one woman during her Gilenya observation. As most of you know, the death occurred in December, and the official results have not yet been released. After reading this information I didn’t panic. It wasn’t until I began seeing news articles creeping up about 11 deaths attributed to Gilenya that my heart started racing, which is quite ironic in this case. The deaths are being mostly attributed to heart related causes.

Still, I tried not to panic. Until I checked the Gilenya support page on Facebook that has kept me sane. When I saw that many of my friends were being told to stop Gilenya by their neurologists, the panic began to set in.

Stop Gilenya? This couldn’t be happening. I’d tried Copaxone, Rebif, and IVIG. I didn’t know if I could take the anxiety of switching again.

But post after post noted that doctors were calling, asking patients to stop the drug, even those who had not experienced any adverse side effects. I checked my cell phone to see if there were any missed called or ignored voicemails that I often left to collect virtual dust for days, but there was nothing.

That evening, I skipped my Gilenya pill. I couldn’t bring myself to take it. I thought of the fear and panic I’d faced on the day of my own Gilenya trial, and my heart went out to the family who had lost their daughter. It could have been me, I thought. It could have been any of the 30,000 of us currently taking Gilenya.

The next morning I left a message for my doctor’s office. The doctor and his assistant were out of the office for a day and a half. I was going to have to wait to discuss it with them. That evening, I look at the box by my bed. I’d come this far, I’d succeeded for 11 months. I took the pill. My heart raced. I took Xanax. My heart raced. Was it the Gilenya? Probably not. I’m attributing it to anxiety. Who wouldn’t be scared? Who wouldn’t think twice? MS has me thinking in overdrive all of the time, unless it’s busy making me too tired to think all together.

Last Thursday I spoke with the doctor’s assistant. She is so sweet and kind and genuine. She’s not fake or forcefully kind. You can tell she isn’t doing her job. She’s loving it. She loves her job like I love teaching. And for that I love her. She gets it. Even though she doesn’t have the disease. And this is a difficult trait to find.

We talked for about 30 minutes, and she asked me to tell her everything I’d heard. It was like talking to my best friend about it. I told her about the one death (which they knew about) and then the articles publicizing 11 deaths. She hadn’t heard about that. But she reassured me that Dr. Smith had just met with representatives that had released information regarding the death. The woman (I am assuming that she was in her 20′s to 40′s, but that is just a guess) was taking two heart medications for blood pressure that interacted with the Gilenya. She explained that this was most likely the cause of her death. But why, why, didn’t Novartis and specialists know this in advance? Why didn’t they stop the heart medication or refuse the Gilenya? I remembered speaking to the Gilenya pharmacist before my trial, specifically asking if any of my current medications would interact. One by one they said no. But the truth is, they didn’t know.

Years back, when I was diagnosed with Raynard’s after being on Rebif my doctors had encouraged me to start a low dose of blood pressure medication. It would be something that I’d have to take daily since the Raynard’s would not resolve. I had the prescription filled back then, but I never took it. Not once. It’s still sitting in my bathroom cabinet. I’ve moved it three times from apartment to apartment to apartment. But I never wanted to take it. It was just another drug, and I knew it wouldn’t cure anything. For the past four days I’ve wondered. What if I had been taking it? Would it have been me?

I haven’t had the follow-up blood tests yet for Gilenya (since I started taking it in March of 2011). At my annual physical on February 14th my regular doctor will perform another EKG. Yes, I do see the irony of having my heart tested on Valentine’s Day. My specialist is sending me the lab work slip to get the blood tests for liver function and blood count. I will have the blood taken immediately.

In the meantime, I am taking Gilenya. I am going for my one year MRI in March, and I expect to hear excellent news. I am also tracking the research on BG-12, the new pill for MS which is supposed to be safer and possibly more effective than Gilenya. The doctor’s assistant said it should be available at some point in 2012.

So, hang in there. Don’t panic. I’ve already done it for you :)

It’s a Chemical Imbalance. Get Over It.

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I have pondered the meaning of depression for some time. In fact, I was depressed long before I even knew what the word meant or how to spell it. It wasn’t until one year ago that I realized medication for depression was not a punishment. It was a possibility.

And so, after much thought and discussion with my counselor, I decided to take the plunge. And you know what? It helps. A lot! I am still me. I have no side effects to speak of, other than more patience and a more positive outlook.

So, why is there such a negative aura surrounding depression? I think it’s for the same reason that people have a negative view of MS. It is misunderstood. Just because someone has MS does not necessarily mean that they have depression. Yes, the odds are high. But my depression began before the MS. I am not ashamed of this fact. Just because I have depression does not mean that I am depressed. It doesn’t mean I’m crazy either. It means that I have a chemical imbalance. Period.

So get over it.

 

The Recognition – Continued…

He walked into the bar like he owned it, and immediately I rose from my bar stool and gave him a hug. It was so quick that it’s difficult to even remember it happening. But I never had a doubt in my mind that we’d hug.

He smiled at me, and said, “Wow,” with a hint of amazement. Perhaps because I looked better than he expected, or maybe because it was just so strange to see me alive, after all this time. The MS hadn’t killed me yet. Wow.

“Should we?” he asked.

“Yeah, let’s grab that table by the window,” I said, naturally finishing his thought.

We sat across from one another, but the distance still felt enormous. Here he was, in front of me. He wasn’t in Japan, he was here, in Flagstaff where we’d lived. His hair was a bit longer, he was a bit slimmer, but other than that, he looked exactly the same as I remembered. I think I might have been staring. I eyed his zip up shirt, grey, ribbed with a shiny silver zipper, and a black anime T-shirt underneath. I wondered the whole time whether she’d chosen the zip up. It looked like he’d made a bit of an effort to get ready, but not too much of one. Classic Donovan.

“Those are some heels,” he said as I scooted from my bar stool to the seat by the window. “Yeah, that’s what people wear in New York,” I said. He had noticed. I silently thanked Aryn for choosing them. Boys.

The discussion at first was simple.

“I drove by Lake Mary,” I said. It was where our second apartment had been. Although I’d never really cozied up to the place. “It looks…run down.” And it had. It showed the wear of the years since I’d seen it last. It was cracked, dirty, certainly not luxurious.

“Did you see Kaibab Lane?” he asked. That had been our first place, one-third of a mobile home. “No, I couldn’t remember how to get to it,” I said. And it was true. MS had taken things, and one of them was parts of my memory. It usually wasn’t permanent, but I noticed that I quite couldn’t access a word here, a memory there. In time they’d usually surface, but stress forced them to flee further into the black holes in my brain. I’d learned not to force them. They were probably hiding for a reason.

Cinnamon had asked me in the car, “So, have you thought about what you want to accomplish today?” No, I hadn’t. I still had no idea what I wanted to accomplish. I figured it would just come naturally, like it always had between us.

And it did for a time. There were a few awkward pauses here, glances there. But all in all it felt pretty comfortable sitting across from him and not touching. Not wanting to touch. But the elephant in the room was staring at me through the window.

“You know, I still think about calling your mom,” he said. “We should call her.”

And then, we turned a corner. He had broached the subject, something deeper, something real. This was what I had gone there for.

“Yes,” I said eagerly, “Let’s call her.” My mom had no idea that I was meeting him for lunch. I knew that telling my family would only stir up controversy that I really didn’t feel like addressing until after it was over. I had made up my mind to meet with him, and no one was going to change it.

“Really”? he asked, as if he hadn’t just suggested it a moment before. Of course, things look different close-up, when they’re right in front of you.

“Yes,” I said, grabbing my phone. “Let’s make this interesting.”

I dialed the number. When my mom answered I heard her sleepiness, it was nap time. “Hi, mom,” I said sweetly.

“Hi, honey.”

“So, there’s someone that wants to say hi,” I said. I knew that I had to make the introduction. Donovan calling on his own would be a disaster.

“Ok,” she said, sounding tired. And I handed him the phone. I had no idea what to expect. Something sincere I suppose. But still, his body language was tense, the wall he’d built strong.

“Hi,” he laughed nervously into the phone. “How are you?” he asked. He didn’t introduce himself. He didn’t need to, but he wanted to be sure of that fact. He wanted to prove he hadn’t been forgotten.

I could hear her, “Donovan??”

“Yeah,” he said grinning. I looked at him, I looked down, I looked out the window at the snow covered mountain. I looked out at the elephant. Yes, this was really happening.

“Yeah, I’m good,” he said. “ I just…I wanted to apologize to you, you know, for disappearing the way I did.” He listened. I wondered what she was saying. She was my mom, she was saying something funny, something brilliant. I wondered if she was insulting him.

“Yeah,” he said, “I know… Well, you guys always did so much for me, so I wanted to thank you,” he said seriously, but still with an air of distance. “I really do appreciate it,” he said. The wall wasn’t cracking.

As I listened, I realized what I had gone there for. Deep down, what I wanted was an apology. He’d given my mom one, albeit a chilly one. Didn’t I deserve the same? After all, I was the one he’d abandoned.

When he hung up, I felt an opening, a chance to subtly shift the conversation the way I wanted it to go.

My phone buzzed.

“No regrets.” It was my mom.

I looked at him, deciding to make the move.

“So,” I said hesitantly. “There is something that I wanted to ask you about.” I continued on without stopping. I certainly wasn’t asking his permission. I was just making an announcement.

“When I was in the hospital, when I got the diagnosis, I remember that you were mad. On the phone, when I talked to you; you sounded…angry.” I looked at him. I waited for a moment. He waited; he looked.

I continued, “And, well, then I didn’t really hear from you that week – at all. And I just can’t really understand why. I mean, I thought that you were on your way to see me, you know?”

I looked at him.

“What?” he asked. He looked at me with a mixture of annoyance, surprise, and disgust, all rolled into one.

“Well, I mean, I thought you must have been on your way to see me. I couldn’t figure out any other reason that I wasn’t hearing from you.”

“No,” he said. Obviously not. I mean, of course I knew that now. But that wasn’t what he meant. I realize now that the no was his warning, that he was cautioning me to stop. But it was too late.

“And then, when you came to visit for Christmas, you just seemed so distant, and I…”

“Look, – ” This was it. I was eager, hopeful. But I’d misread his tone.

“…I don’t want to talk about this,” he said.

“What?”

He was looking out the window, squirming in his seat, arms crossed.

“Oh,” I said, realizing what was happening. Almost instantly, I was angry. But I recognized something. I was taking control. He wasn’t used to it. I wasn’t the same girl he’d dated, I barely resembled her on the inside.

“Well, I do,” I insisted.

“Well, I didn’t come here to talk about this again. I mean, let’s talk about stuff now. Like, I don’t even know what car you’re driving,” he said.

“What … car I’m driving? Really?” I felt cold. And I felt hot, anger pulsed in my veins, the same veins that had been filled with Gammagard, tapped into with countless needles, that bled steroids, that had been taped, swabbed, stuck.

“Well, I didn’t come here to talk about that,” I said. I caught his eyes, distant, perhaps back in Japan. Mine were flickering. I was sure that they weren’t green. I wasn’t sad, I was angry. I wasn’t hurt, I was livid.

This was my day, if I wanted an apology, why didn’t he just give it to me? Sure, he’d apologized on the phone, but it was different in person. It was real.

And I didn’t get one.

“I need to use the restroom,” he said, getting up.

“You’re a Mess…”

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Lying on the table, I couldn’t help but panic. The last words the doctor had said to me were, “Rest now. I’ll be back shortly to check on you.” I tried not to count the needles. Two in my feet, three in each arm, one in my head, two in my hands. Stop it. Just stop it. One in my stomach. One in my thigh.

I felt a full blown panic attack coming on, but there was nowhere to escape. How was I supposed to rest with needles sticking out of every body part?

“Well, you’re a mess,” the doctor announced on his return. It wasn’t surprising news, it was just surprising news from a doctor. It’s usually not their style. But then again, Dr. Dan wasn’t quite conventional. Other than wearing a white exam coat, he swore like a sailor and preferred using needles to prescribing pills. Pick your poison I suppose.

It all started when the sores in my mouth became overwhelming. I couldn’t eat salad, chips, anything for that matter. All I could do was sip on tea and try not to run the statistics of people who’d died from herpes in the trials through my mind. But the fact kept running through my thoughts like a ticker on replay. “Five people in this study died from herpes infections while taking this medication.” The thought was heinous. Death by herpes. I was petrified enough to agree to an impromptu meeting with my in-laws’ family acupuncturist.

“Yes,” I gave a nervous laugh, “I guess I am.” I expected to see him chuckling as well as he reported the grave news. But he was stone cold serious in his delivery. The words echoed again and again, “You’re a mess.”

He continued, “You’ve been mistreated by doctors for your entire life.” He was right, I had been. But I had never said those words, in fact, I’d only known Dr. Dan for 15 minutes before he starting poking me with needles that sent pains shooting up my legs and into my feet.

“Your husband is waiting downstairs. We ran a bit over since you looked so restful,” he said. Restful? You mean paralyzed with fear?

“He will explain the detox to you,” Dr. Dan stated. It was a fact, not a question. “You will complete the two weeks and then report back to me.”

“A detox?” I asked. This wasn’t what I was expecting, at all. “Yes, gluten free, dairy free, many of my patients respond well to it. We need to start from scratch. Until you complete the detox I am just guessing on how to best treat you,” he said, scribbling notes as he talked. He was so doctorly, and not doctorly, all at the same time. He spoke with the conviction that I was used to hearing from his type, but the words and techniques were completely foreign.

Well, then, I guess I have no choice. I joined Aryn who was waiting for me at the medicine counter holding three large containers and a pamphlet.

“Honey,” he said, soberly breaking the bad news, “You can’t have any ketchup.”

Chapter Excerpt – The Recognition

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Sitting at the bar, memories came flooding back. Dancing, drinking, New Year’s. In my wallet was Katy’s license. I hoped that I wouldn’t have to use it.

“Hi,” I said to the bartender with my brightest, most grown-up smile. “I’d like a shot of Jager and a vanilla vodka with soda.” Even to my mature ear, it did sound a bit suspicious.

I wore Cinnamon’s fake leopard fur around my shoulders, my black velvet skinny pants, high black boots with tall heels, and my chic tie dye long tank top in black and white. I looked good. I had to. Aryn had even helped choose my boots. He said, “Don’t look too hot.” And when I replied, “I have to look hot,” he didn’t even flinch. He knew it was true. He wanted me to look hot. He wanted me to meet Donovan.

The bartender eyed me. I could read his mind. He thought, She looks older, more mature, but maybe it’s just a hoax, the fake fur and all. She’s ordering a shot at 12:30 in the afternoon and a vodka soda.

“You don’t mind if I just check your ID, do you?”

“Of course not,” I flashed my most convincing smile. I was nervous, but I tried not to let on. I needed these drinks, and I’d do anything to get them.

I handed over Katy’s ID with confidence. “So, are you guys having the Pine Cone Drop?” I asked, attempting to distract him from the photo staring back at him. It was clearly not me.

“Uh, yeah,” he replied, distracted. He was examining it a bit too closely.

“Ah, I’ve spent many New Years here,” I rushed. “In fact, I’m kind of nervous, meeting an ex-boyfriend today for the first time in five years,” I spouted, trying to retain my composure.

“Mmmm,” he said, looking at me, back at the ID, and deciding to play along. “Ok,” he said. Relief. At 32-years-old, I felt sixteen again. But I’d done it. In comparison to what I was about to face, handing him a fake ID was nothing. Besides, it’s not like I was anywhere near underage.

The Jager shot was gone in an instant. I figured Donovan would be late, but just in case, I needed to take it quickly, and I needed to hide the evidence. I pushed the shot glass towards the bartender to get his attention. Get rid of this, quickly, I willed him.

It did the trick in no time. The warmth spread through my belly, down to my toes. Yes, it was just the thing. I silently thanked Katy a million times. What would I have done without her?

I needed someone to distract me as the time ticked away, 12:30, 12:32.

I texted Kelly. “Today’s the day! Waiting for donovan… Took jager shot and used a fake ID.”

“What? OMG did NOT know u were seeing him! Wtf. Are u w aryn? Why the fake ID?”

Oops. Apparently in all of the hustle and bustle of the holidays, I’d forgotten to inform my best friend of the meeting.

“No Aryn! He has my ID so I had to borrow Katy’s!!! But he’s already 15 minutes late.”

“Did u not tell anyone about this meet and greet on purpose? Is Katy going to be there The whole time?”

She sounded…concerned, incredulous. Did she really think I needed a chaperone?

“Sorry, been a bit flaky, maybe he’s standing me up.” No, no Katy, no Aryn, just me and Donovan, for the first time in five years, almost to the day.

“NO! this is crazy lic i o u s!” Kelly replied.

“LOL licious, love to keep things interesting.”

“More fodder for the book!”

“Yup! Miss u.”

“So crazy. Don’t drink too much. I am sure u look beautiful!” Leave it to Kelly. She knew exactly what I needed to hear, minus the calling it crazy.

“Thanks, Kel. Now he’s almost 30 minutes late.”

“Oh geez. How long are u going To wait?” I hadn’t thought that through. How long could I sit at the bar before I just looked pathetic? I was now 12:54.

“??” “Until I’m hammered? Then I’ll just punch him when he gets here.”

“Hahahah!”

“Does that mean until u run out of Jager money?” “Chances are you’ll punch him regardless.”

“Yeah, and I start begging strangers to give me drinks while I cry.” “LOL, needed u today 🙂 You’re the best!!” I loved Kelly. Without her, I wouldn’t have been sitting there. In fact, I’d most likely be strapped to some bed in an aslyum somewhere…”

“Well, good luck! Make sure u l m k how it goes. Call me from the bathroom if u need me 🙂 ”

“LOL, yeah, to virtually hold my hair back!!”

“Think he chickened out?”

“No, I think he’s an inconsiderate ASS.”

And then, I saw him.

It was 1:10pm. He was 40 minutes late.

One last text to Kelly. “Game On.”

Life Unexpected & The Ghost of Christmas Future

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Today I woke up on the wrong side of the bed. Well, metaphorically. I was the definition of grumpy. Head cold + five year MSiverssary = Me being depressed. I had one thing to look forward to. Seeing a house for sale. That is, until my husband started trying to get out of it. “Are you sure you want to see it today, honey?” I could tell from his tone that he didn’t want to go. “Yes, I’m sure.” I knew it was the only thing that might possibly cheer me up, the prospect of the future.

But on the car ride there, I was visited by the ghost of Christmas future. But in my daydream it was five years ago, right before I was diagnosed with MS.

I imagined that the ghost told me that my future was going to have a big speed bump, but that I had to hang in there. I imagined the ghost showing me myself, my life, today.

“You work as a writing teacher at the college level,” he said dressed in his dark cloak. “You teach well-behaved students who call you professor. And you also teach writing online.” It was a dream come true. “You’re writing a book,” he said. “And you have an agent who thinks that you write like an angel.” “A book? I’ve always wanted that,” I said in excitement. “An agent? I must be on cloud nine!”

I imagined him showing me a glimpse of myself taking Nicole’s yoga class. “What? How is that possible? What is Nicole doing here?” She was my best friend in high school, and was living in Germany in the Army at the time that I was diagnosed. “She came here for you,” he said. “And now you take her yoga class every week, and you meet for lunch at Panera Bread on Thursdays.” My heart soared further. I had a wonderful job and my best friend living near by?

Then he showed me Kelly, my best friend and roommate. She was also pregnant. “Kelly!!” I shouted. “Yes, she is happily married,” he says. “Do we live nearby?” I asked hopefully. “No,” he said. “But you see each other often, and your bond remains strong.” He showed me a glimpse of the new friends that I’d met. Autumn, my closest friend in Newport was a bubbly blonde eye doctor who the guys couldn’t resist. Kara was the hippie teacher who was pregnant.

And then, he showed me an adorable guy wearing a fedora hat and Converse sneakers. “Who’s that? I asked? Am I dating him?” “No,” he said, “This is your husband.” Married? Me? I couldn’t believe it. “And you have two small kittens,” he said showing me two black and white cats. He was bracing for my response. “But – Oh, nooooooooooo!” I wailed in disbelief. “What about…Timby?” “You lose her, quite unexpectedly,” he says. I feel guilty for a moment, being so sad when my life appears to be so wonderful.

He shows me one last scene of me and Aryn, walking side by side on the beach. And then, I notice… “But, why….” I hesitated. “It looks like he’s helping me walk. Why am I walking so slowly?” I turned to him as waves of disbelief washed over me.

“This year, soon, you will be diagnosed with MS,” he said. “But you have to understand. Without it, you will never get here, to this future …”

Five Year MSiverssary and Counting…

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Yesterday was my five year MSiverssary. It came and went. But not without incident. Every year since my diagnosis the week after Thanksgiving has brought out my weakness. On my one year anniversary I had just completed five days of IV steroids. Each year it’s been something new. This year it’s an upper respiratory infection.

I scheduled my acupunture appointment for yesterday. I knew if nothing else, it’d be my treat for the day. At lunch time I roamed around TJ Maxx, and I bought myself a new wallet. When I was in the store I’d forgotten about the verssary, but when I felt guilty about my purchase, I remembered. It was my day. I deserved a treat.

My ex-boyfriend called. We keep in touch over Facebook, and we talk now and again on the phone. When I heard his voicemail I was surprised, not that he’d called, but that he’d called on that day. But he hadn’t remembered. It was purely a coincidence, he said.

My family I’m sure remembers the season. Especially my mom. I was moving out of my apartment with my best friend Kelly. I was moving into my parents’ to wait for my now-ex to return from Japan. Well, we know how that worked out…

They remember that it was December, I’m sure. I was sick through Christmas that year; I did all of my shopping online. I ate as many Christmas cookies as I damn well pleased. I gained 10 pounds, maybe more from the steroids and cookies. It was the last time that I saw my ex.

I wish that I could say I’m healed. But that’s the thing … I’m not. I’d like to think I’m healing. I am sure that acupuncture is my closest ally. But yesterday even that ended badly. You see, I was so light headed I could barely drive home. My to buy list consided of: a pot to clean my nose with salt water, coconut water for electrolytes, a pear to bake with honey for my cough, chicken soup, and an onion. No joke – an onion for my stuffed up right ear. I love the list. That alone was the highlight of my day.

My ex hadn’t remembered, my family hadn’t, friends hadn’t. My hubby knew, but only because I told him and reminded him. But he didn’t get me flowers or write me a poem. He did buy the items on my list, minus the pear and onion, which I’d forgotten in the cloud of my post-acupuncture daze.

I skipped pool, and I stayed home to rest. I was fine with it until suddenly I wasn’t. It’s almost like forgetting a birthday, because I became a new me that day.

I’m not sure how I expect those who love me to acknowledge the day. I guess if I got cards and gifts and a cake, that would help. Flowers seem a bit wrong for the occassion. But gifts, yes. Cards, yes. Congratulations, fuck yeah. But I’ll skip the Christmas cookies and steroids this year.