1999- Assistant

Tick. Tick. Tick. Tick. Tick.
The sound of the clock was driving me insane at this point. Its 2:45pm on a Thursday and school is almost out. Time goes by even slower when you spend school hours stamping books.

Instead of spending the last hour and a half with my 4th grade class who had been doing God knows what… I’ve been standing at a little table in the library branding all of the cover’s of the new books with my school’s name. This wasn’t punishment, even though it often felt like it.

You see, I’m usually sent here instead of being sent home.. For whatever reason my acid reflux has been acting up and my bones and joints have made random muscles in my body twitchy recently. I’ll go to school in the morning fine… Sometimes… Other times I wake up feeling like this. I’ll go about my day with my classmates and then randomly I’ll get a stomach ache… A doubled over in pain kind of stomach ache in the middle of class. And then my leg.. or my arm.. or my hand… or my neck will start twitching.. And I’ll cry because it hurts something terrible.. And then get made fun of for crying like a little baby.. And then I’ll get sent to the office because my stupid teacher never knows what to do with me. My school is new, this is the first year it has ever been open, Randolph Howell Elementary, and all or most of the teachers are new and inexperienced as well.. Including mine.

So anyways, I’ll make my way to the office and then from there they’ll decide what to do with me. They almost always have the nurse examine me, and she’ll almost always tell me I’m fine but looks at me as if she knows that I’m actually feeling horrible… So for the first month or so of this they’d call my mom and send me home.. And then after missing so much school they decided to find other tasks in the school for me to do to… well…. I guess to take my mind off the pain until school hours are over with. Today, like most days, I’ve been sent to do someone else’s job in the library. While the library assistant is in her office drinking coffee and surfing the web, I get to complete all of the tasks she’s supposed to complete. Sounds kind of screwy if you ask me.

Tick. Tick. Tick. Tick. Tick. Tick.

2:46pm…

This is bullshit.



1999- Lyme Disease

A few weeks ago I had my blood drawn. A lottt of blood drawn. And today we find out the results. My mom’s been on the phone for a while now..

Mom refused to tell me what I was being tested for, she just said it was going to hopefully tell us what all of my weird aches and pains were from. I’ve been having these aches and pains since I was 2, and now I’m 9… For years I’ve been sent to different doctors and specialists.. For years I’ve been getting my blood drawn every few weeks.. For years I’ve been told that we were hopefully going to find out what was wrong with me.. And for years we’ve been told “We’re sorry, her labs are normal. Good luck to you, though.”

The door opens, mom steps out of the room…. Her expression is blank.
“Hey mom, what’d they say? Am I normal?”

She looks at me as if she’s unsure if she wants me to know…. But quickly just blurts out….

“Megan…. You have Lyme Disease. You have Lyme Disease like I have.. Except… You didn’t just have Lyme Disease. Sometimes there are separate infections that get mixed in with the Lyme, and well…. Your blood work came back positive for just about everything..”

Before I could even have an emotion she says “Look on the bright side, at least we know what it is now and we can get you help! I’ve made you an appointment with my doctor, Dr. Crist. He’s going to help you get better.”


Rickettsia. Ehrlichia, Bartonella, Babesia, Rocky Mountain Spotted Fever, Mycoplasma etc…


My stomach turns and feels all knotted. I feel as though the color from my skin is fading… They say that kids are carefree and handle situations or bad news easier than an adult would, but at that moment I felt a lot older than I was.. “I have an incurable disease… I’m only 9.”

And at that moment on I knew that life was never going to be the same.

1997 : Sweet Tooth

Ever since mom was diagnosed with Lyme disease, sweets were rarely found in our house. Apparently eating sugar made you feel a lot worse. I suppose you would think the same would go for any sickness, but I’m just a kid. I have a sweet tooth, and I feel like I have a right to think that mom may be going overboard by completely banning sugar like it’s the black plague. Luckily for my brother and me, our dad is a junk food junkie. Even though we weren’t allowed to have sugar in the house anymore, my dad always has a “secret stash” that only the 3 of us know about….

“Now let’s see..” I thought to myself. “Sugar cookie, chocolate chip cookie, candy bar…” My choices continued but there is something about my dad’s chocolate chip cookies that made me keep running back to them. They weren’t thin or crispy. They were thick, chewy, and had just the right amount of chips vs. the right amount of cookie.

As I’m working my way through my first and only cookie that day I’m noticing a stomach ache approaching. It seems like every time I eat anything sweet, I get a stomach ache, fever, and body aches. ”Reflux again today, just like yesterday, just like every day” I thought. Acid reflux was my excuse for every ache and pain I had these days. That’s what the doctors kept telling me and doctors are supposed to know everything. At least that’s what my 7 year old brain thought.

1997 : Valentine’s Skate Night



“Oh, my!” said the little flower. “All my friends can come and go, but I must stay in one place.”



“Did you get any Valentine’s at school today?” asked my mom as I opened the car door. “Yeah, but only because everyone has to give the entire class a Valentine.” I mumbled. “Any special Valentine’s from any special boys?” my mom nudged on. “No. The boys in my class are stupid.” I said annoyed. Which was true, and when they say that girls mature faster than boys it surely applied to every boy I had ever gone to school with. “Everything alright, Megan? Did you have a bad day or something?” my mom said looking back at me through the review mirror after noticing my tone. “Yeah everything is fine. My head kind of hurts and my legs hurt. I don’t know why, but I feel okay. Can I still go roller skating with Tiff tonight?” I said trying to change the subject. “Yeah, call her when you we get home and make sure she’s still going” said mom. Tiff was one of my best friends. My first best friend. Best friends since I was 2 and she was 3. She lived a couple of houses down from me and we spent almost every weekend playing. Tonight was Friday night and roller skate night for my school at the skating rink.

“Alright boys and girls line up from youngest to oldest in the center of the rink for limbo! If you don’t want to play, please skate off the rink and sit on the side until the game is finished” announced the DJ. “You wanna play or sit this one out?” my friend Tiffany asked me while we stood around watching other kids line up. I felt funny. My legs were still aching for whatever reason but this was my weekend and I wasn’t going to let anything get me down. “Sure, let’s go!” I said racing Tiff to the rink.

5 minutes passed by and half of the kids were already out of the game or disqualified for acting up, but we were still in it and I was getting tired. “I think I’m going to bail, come find me when you’re done” I said to Tiff, skating off the rink and over to the side. My legs were aching something terrible at this point and were beginning to feel like jello. My head didn’t feel right, I couldn’t think straight. I didn’t feel sick but what in the world was going on with me? “You okay?” Tiff said while she skated off to the side to see what was up. “Yeah, I don’t know. I don’t feel right. My legs hurt really badly” I said. “Maybe you’re just tired from skating. Let’s sit here for a few minutes and rest. You’ll probably feel better by the end of the game.” Tiff encouraged me.

As time went by I began looking around the roller skating rink as if it were another dimension. Every time someone spoke it sounded like they were being sped up. Everything sounded… Fast? Voices, music, just sounds in general. Yet when I looked around it seemed as if everyone was moving in slow motion. And when I tried to speak or move I felt as if I were in slow motion myself. My mind wasn’t right. I needed to go get my mom. “Tiff, where’s my mom? Do you see her?... Do you mind going and getting her?” I asked. “Sure, is something wrong?” she looked concerned at this point. “I’m not really sure” is all I could muster out.

As Tiff went to go get my mom I felt like a million years were going by.. Watching everyone skate super slow, so slow that the colors that they were made up of just kind of blurred together, yet all of the noises were sped up and warped.
“Megan, what’s wrong?” my mom asked rushing over. “I don’t know mom.. My legs hurt and my head feels funny.” I said.

Before I knew it I was limping out the door and waving to bye to my best friend. We were supposed to have a sleep over that night, but since nobody knew what was going on with me I was taken straight home and told I was probably coming down with the flu. The flu? I didn’t feel like I had the flu, but at the same time I didn’t feel “right” either.

“You’re home early” my dad says as we walked in. I immediately limped my way up the stairs and into my brother’s room. He was watching some movie and I figured since the rest of my night was going to suck I might as well watch whatever he was. I proceeded to lay down on his bed while he sat across the room fiddling with some papers. It was then that I remembered I had some Valentine’s candy leftover from school downstairs in my back pack. “Well that might make my night a little less sucky” I thought.

It all happened so quickly. One minute I was getting up to get my box of candy hearts and the next minute I was face down on the floor of my brother’s room. I had attempted to get out of his bed, but what I soon found out is that when your legs don’t work, you don’t stand up, instead, you fall. I think that was when I realized my legs weren’t working… It took me a minute to process what had just happened since my mind was all over the place tonight. “Ant! Get mom. I can’t move my legs!” I yelled. “Seriously?” asked Ant. “No, I just love smelling the carpet in your room. YES. MOM!!!!!”


1997 : Pediatrician


Being carried into the doctor’s office at 7 years old is always an awkward experience. All of the other kids and mom’s look at you like you’re diseased. Yeah yeah, I know what they’re all thinking.. “Either she’s so sick she can’t walk or she’s just really lazy.”

Doctor Brooks, my doctor, wasn’t in today. I was going to see someone filling in for him… Doctor Fitzgerald or something like that. Doctor Fitzgerald was a man looking to be somewhere in his 30’s. He was tall and had sandy brown hair with no facial hair present. He smiled at me strangely and without saying a word examined me. “So what’s going on?” he finally asked. “I can’t move my legs” I said as I thought it was as obvious as daylight. “And why can’t you move your legs?” he asked. Doctor Fitzgerald.. Please explain to me how you became a doctor? Because you’re asking the dumbest questions I’ve heard all week. If I knew the answers to these questions, I sure as heck wouldn’t have come to see you, now would I? No, I never said that.. But I’m pretty sure my mom and I were both thinking something along the same lines.
That doctor’s visit ended in disaster. I went home with a prescription for over the counter Tylenol. WOW. Sounds like we’ve really got it figured out here. I even had a few x-rays done on my legs to make sure they weren’t broken. Sure enough, as everyone suspected, my legs were fine.

So what was my diagnosis you ask? Acid reflux again? Well, this time, I didn’t get one. I had a “Maybe you should come back when Dr. Brooks is back in office.”

1996 : Mom Has What?

“Wake up Megan, it’s time for school..” I hear my mom say.. Typical words of a typical day… But today’s words didn’t sound the same. Mom sounded run down. Exhausted. “Maybe she had a cold”, I thought to myself. But mom was tough, she could take it. Besides.. Mom NEVER gets sick, and when she does its never anything big.
I was ready to go downstairs and my favorite morning ritual was to hitch-hike a ride down the stairs like a monkey on moms back. I waited for her at the stairway and as she came out of her bedroom I jumped up waiting for her to give me the signal that she was ready to pick me up…. But she came and went and I got no piggy ride down the stairs… Maybe something really was wrong? “Why couldn’t I have a hitch-hike this morning mommy?” I asked sad and let down. “I don’t feel like myself today Megan, my body is sore and my joints hurt.. Maybe tomorrow. Sorry hunny”.

What the next morning brought was an even bigger surprise. I was still asleep when I heard my dad’s voice telling me to get up for school. What was my dad doing home from work? My dad was never home. He steps into the room and must’ve noticed the confusion as he said, “Mom’s not feeling well again today.. She’s going to see the doctor later, but for now, I’ll be taking you to school”. At this point I figured mom had actually come down with the flu, I had never seen mom so out of element.

As the weeks went by my brother and I continued seeing less and less of the mom that we knew. Her test results were to take a while to come back, but she told us that she thought she had Lyme Disease since she had a bulls eye rash a while back. Lyme Dih-what? Wait. Hold up. Mom thinks she has a disease? And what the heck is LYME disease? This was too weird of a reality to swallow, thinking that my mom would be any other than the one I knew, so I continued on as if she’d never mentioned those two words….. I had an amazing imagination but none too great to fool me for more than a week or two.. It was hard to get past the fact that she was now this completely different person, or so it seemed. She walked around so miserable and exhausted and looked like the walking dead. Her common complaints were joint aches, head aches, muscle aches, and just aches and pains everywhere. Fevers. Memory loss. Fatigue. You name it, she felt it. It was like an endless list of symptoms I thought I’d never understand.. Funny thing is, neither did her doctor.

The test results came back positive. She figured as much but her doctor was in shock. He’d hardly even ever heard of “Lyme Disease” and hadn’t the slightest clue of how to treat it.. But doing the best he could in studying into it, he read that within 3 weeks of antibiotics of doxycycline through a picc line IV would be a cure. YES! Mom was going to be back to herself within the month. Thank you LORD. Things were finally going to be back to normal.

1996 : Crist

Saturday mornings were no longer cartoon mornings in the family room. In fact, no mornings were cartoon mornings downstairs anymore. Every morning for those 3 weeks mom had to have a nurse come out to the house and hook her up to an IV. The nurses were always nice, though it seemed like it took a million years to pump a tiny bag of fluid into my mom’s veins. Ant and I were usually told to go outside or hangout in the playroom until she was done with her medicine for the morning, so that we wouldn’t interfere with anything. BORING. But that’s okay it was soon to be over with, right? The doctor said that mom would be COMPLETELY better at the end of these 3 weeks and that life would be back to the norm. Boy was he wrong……

3 weeks went by… 3 months went by…. Mom was still sick… except now that she’s exceeded her 3 weeks of treatments the doctor refused to treat her for Lyme Disease any longer. What the heck? Why was mom still sick? She was supposed to be better, but instead, the zombified mom that I’ve known for the past few months continued onward. It confused everyone. And not for my own selfish 6 year old needs, but I had stomach issues that, let’s just say needed lots of frequent attention. I was up crying through most of every night and every school day. Often times I was sent home from school being doubled over in ridiculous unexplainable pains. I had the “weirdest” case of acid reflux and IBS and ulcers and every other stomach problem under the planet. Now that’s one thing my mom and I had in common… Unexplainable, weird symptoms that didn’t make sense. Except the difference was, she knew what was causing hers. At the same time it was hard to see someone who was as strong as stone come crashing down into a pile of rubble. My mom HAD to get better. She HAD to.

It seems like just as quickly as mom became sick again she found some answers. She found the truth. They say sometimes the truth hurts but nobody said how badly. Mom’s 3 week disease turned into a disease with no cure. She caught up with a Lyme group in Nashville, TN who had all gone through the same or similar instances as my mom. They were finding doctors who followed Doctor Burrascano’s guidelines on how to treat Lyme Disease and even coming up with their own ideas through intensive research or study. Only a handful of doctors correctly knew how to treat this complicated disease and discovered that late Lyme or Chronic Lyme needed continued treatments. For how long? Sometimes forever. Forever was a scary word. To imagine MY MOM sick, forever? Noway. No how.

She was lucky to find a doctor within driving distance. Somewhere in the middle of bumblefuck nowhere Missouri. Doctor Charles Crist. Doctor Crist had become particularly interested in researching Lyme when his wife was diagnosed with it. There was no help for her, and without him furthering his studies, she could have died without proper treatment, just as the rest of those with Lyme.
Before I knew it, my grandparents were at our house for a visit and mom was on her way to Missouri. My brother and I always enjoyed time with them, and eagerly accepted staying under their care for a few days. The time that mom was gone flew by with them here.



With my parents return also came a mom with new faith. It was as if she was back to the same old mom I had known, even if she didn’t quite feel up to par. She was glowing, as if hope were lighting up her face. She was finally getting the help that she needed. There was a chance. There was hope.

1992

Summer Day : 1992

“Once upon a summer day there was a sad little flower. The little flower was all alone except for a ladybug who kept flying home to see her children. ‘I’m so lonely,’ said the sad little flower.”

“You grab the berries, and meet me in the back by the woods and I’ll smash them into soup!” exclaimed my 6 year old brother, Anthony (Ant for short).
I was 2 years old and we were playing potion in our backyard. I gathered up as many berries as I could off my mom’s holly bushes and headed for the woods. The grass was tall and thick as I strolled through it in my sandals and shorts. I picked up a few bug friends along my way to the woods, some hitch hikers (so I thought) riding along the bottoms of my legs. I didn’t mind, I was happily assisting my big brother in our super awesome and top secret potion business we had created by the woods.

Looking down at the holly berries I had picked, I began to notice how much they resembled blueberries.. Their round shape, bluish and purple in color… And when you smashed them they squished out bright red juice like blueberries too. At 2 years old curiosity always gets the best of one and sure enough I soon had a handful in my mouth. Chewing and chewing I realized they tasted NOTHING like the blueberries I had ever eaten. They were bitter, crunchy… and honestly? Quite DISGUSTING! I began spitting them all over the ground, and then started to cry out of pure fright of what I had just done. Ant runs over with a toy hammer and berry juice staining his white shirt.. “Megan? What’s wrong? Megan what’d you do?! MOM!!”


Hospital : 1992


“Wake up sweetie, it’s time to check your vitals..” whispered the nurse. Afraid of whatever equipment she was holding up to me, I hesitantly sat up and obeyed. I didn’t mind the nurse too much, she was always nice to me and rarely did anything to me that hurt. Arm cuffs, stethoscopes, and thermometers. That’s pretty much all I needed to expect from her. It was the doctor who was scary, with his bright lights and shoving sticks halfway down my throat, ordering shots or IV’s. But as far as the nurse and I? We were alright. My mom started to stir... She had fallen asleep over on some couch or chair they had in the room and was groggily woken up by the sound of the monitors beeping my temperature and other readings… “Any news yet?” she asks the nurse.. “I’ll check with the doctor in just a minute” she responds.

Later that morning my dad surprises me with donuts. Mmm! I hadn’t been able to eat the entire week I was there.. Just weird funky thick pink liquids the hospital provided for me.. Some of them were for testing, others were actual food. I cannot believe they would of ever of been considered food either… The best I can describe the taste is, pink chalk added to sour milk. Something that, at 52 years old would be hard to choke down, let alone the 2 year old that I was. I was allowed to eat because I was going home that day. I was also pretty excited about the fact that I could play with my toys and my friends again. The hospital had a giant playroom with toys and other sick, but not contagious, kids that I could socialize with. I remember every day that I was there that week, I would go to the playroom and meet a new friend.. And every friend would tell me what was going on with them: surgery, cancer, heart problems, muscular issues, and other sicknesses I didn’t understand, and neither did the child who had it usually.. We were just happy to escape being there for an hour each day.. To play and talk to one another as if it were our preschool not a death sentence. But today I was going home so what did it matter. I was happy to say my final good bye to that place.

After returning home I said a long hello to my kitty cats that I missed so much and to my brother. I scoped through all of my toys and jumped on my bed. I had to take it easy, but it was hard to do as an overly excited 2 year old who spent days in the hospital.. As bedtime approached I asked my mom to read me a story.. The same story I often asked for…


“Once upon a summer day there was a sad little flower. The little flower was all alone except for a ladybug who kept flying home to see her children. ‘I’m so lonely,’ said the sad little flower.”

At the end of the day, what was my diagnosis you ask? Acid reflux. Yep. You eat a couple of berries and apparently you get acid reflux for the rest of your gosh forsaken childhood/life. If that really were the case, I wish someone would of told me sooner… I would’ve never ever touched a single holly berry to begin with.. But there was much more going on than we'd ever of guessed.