First Snow

The snow falls slowly from a white sky, landing gently on leaves, green and yellow, still clinging to their branches, willing the seasons not to change. But the seasons are as inevitable as the circles of the sun and the moon, illustrating the Circle of Life every year in bright blues that turn to yellow and orange that are covered under a blanket of sparkling white that melts to reveal sprouting greens and pinks. The chapters of our lives are marked by revolutions around the sun; even when we can't see it, it's there, shining brilliantly as it holds us together, sustaining life as it has always done.

As I gaze out my window, I watch as trees let their branches sag under the weight of the sky. A breeze nudges the snow, making it gracefully fall to the earth at a small angle. Inside, the heater is on, working in concert with my sweatpants and oversized black fleece to keep me cozy as I sip my tea. I dream of the days as a child that I bundled up in snowpants, a jacket zipped lovingly up to my chin, a home-knit hat and old, thick ski gloves, and ran outside and down the street, my little sister tagging along behind. Winters passed in a blur of snowballs, snow angels, sleds and bowls of snow drizzled with hot maple syrup. Towers of white covered the ground for months, growing and waning with the world but always present.

I watch the sparkling flakes begin to fall in ernest, sadly knowing that every last one will melt by noon tomorrow under the unforgiving Colorado sun.

Embarrassed

This is embarrassing. I just went on Amazon to replace a friend’s pizza peal that I broke while house sitting. At the check out, there was an offer for a $40 gift certificate if you sign up for an Amazon Visa. I have a Banana Republic Visa that I want to cancel since I don’t use their rewards anymore, and figured I could replace it with an Amazon one. Apparently not. I began to fill out the information on myself: name, birthday, social security number, phone number, but then I got to the employment section. Income: $0. Employer: none. Type of employment: unemployed. Work phone number: I entered in my cell again. I have impeccable credit - no debt, no late payments, nothing - but instead of the “You’ve been approved!” I expected, a message came up saying that I haven’t been immediately accepted; they need to keep looking. They’ll get back to me. Unless they deem me a liability. A liability? This is humiliating.

I’ve been through a lot in the past year, and it’s taught me about myself: who I am, the strength and courage inside me, what I believe in, what’s important to me. But staring at the online form, I realized what I would have to enter. It never used to bother me that I didn’t have a job, because I was making a difference - for myself and for others. For the first time in years, I felt like I was doing something that mattered. I wasn’t selling phones, I was making a contribution to the world. So when did that turn into a bad thing? Why do I feel ashamed when I say that I’m unemployed? Why does it make me feel so useless? Worthless? What changed?

Yesterday I attended an online epilepsy blogger summit. It was interesting and informative and I felt like I belonged to a group that meant something; that made a difference. I felt my worth to the world. Yet it took only twenty one hours to forget. I woke up to a new day and the oscillations of life caught me on their down-stroke. A simple credit card application focused me on the superficial - the hard facts that sit black and white on the surface. They show no color, no story, but those pull-down multiple choice boxes made me feel worthless and embarrassed.

Guest Post

My guest post on the TalkAboutIt blog: Diagnosed
http://talkaboutitorg.ning.com/profiles/blogs/diagnosed

Moving In

As of September first, John is officially moving in! For all intents and purposes, we’ve already lived together for a while, but now it will be official!

I spent yesterday running up and down the concrete stairs of my building as I did load after load of laundry between job-finding initiatives. After two loads of delicates/work out clothes, one of colors, one of towels and one of sheets, I rearranged my shelves, moving picture frames, baskets of office supplies and jewelry boxes to make room for the extra t-shirts, shorts and pants that will be permanent residents. I went through my over-stuffed closet and took out all of my winter clothes and dresses that I don’t wear and packed them up to make room for his shirts and suits. This is really happening! I’ve never before lived with someone more than a roommate; neither has he. It’s new for both of us, and while we’re each a little nervous, it’s good nervous, the excited kind precipitated by moving forward to the next chapter of life.

This afternoon I’m going to get a couple pictures of John and his friends and family to swap for some pictures of mine in the many frames balanced on bookshelves and window sills. It’s part of the transformation of a girly bachelorette pad into a compromised co-habitat. Wish us luck!

A Big Year

It’s my birthday tomorrow. In twenty nine minutes, to be exact. Twenty five has been a big year. Since I was a kid, I would sit down the night before my birthday and write. I would reflect upon the ups, the downs, the changes and the things that stayed the same. I’ve been wondering how to even begin to tackle that this night, so much has happened. I guess I would say that this year was, overall, a year of love and acceptance. I had my first whole summer since college without a weekend on Bohn Island; I grew closer to friends I hadn’t expected and grew apart from others I never thought I would; I watched my friends get married and heard them talk about children; I even found my own boyfriend and grew to love him, too. I watched as my epilepsy consumed my life, first as my seizures got worse and I had sometimes-debilitating side effects from my pills every day, and then as I decided to have surgery and lived through what that meant. I went from sitting in a Starbucks with an October wind rushing me every time the door opened and reading that brain surgery had an eighty to ninety percent chance of success to three months later, sitting in a plastic chair with foam cushioning across from a neurosurgeon as he told me I had a twenty five percent chance of success and then taking it. God, I feel like all I think about and all I talk about is my surgery, seizures, epilepsy and recovery! Sometimes I get so sick of being inside my own broken-record, but somehow I’m not able to escape it. Yes, the headaches tether my thoughts to my body, but maybe I’m just not able to let it go. I spent three months planning and five more recovering, putting a grand total of almost three quarters of my twenty fifth year centered around my surgeries. I learned so much this year. Being denied the choice to take care of myself, I was forced to let go, give in and depend on other people. I never knew how much trust I was keeping inside me, grasping tightly to it as I elbowed people away. It was when I gave in and fell, dropping my trust until my arms went slack, that I knew I had enough love to catch me before I hit the ground. I learned trust, I learned love, I learned friendship, and I could because of how I learned pain. So yes, it was a big year.

As I rapidly approach midnight, I make two promises to myself: that I remember all of the lessons I learned this year, and that I let myself move on. I can’t be trapped in my limbo forever; I didn’t have surgery so that I could stay and dwell on it for the rest of my life. This year I will remember and I will forget. I will cherish and I will endure. There is so much out there to experience, and now I don’t have any reason to stay behind. I stare through the window to the future and I see that I know nothing about the world and very little about life, but it’s okay, I don’t need to have all of the answers. Tomorrow I’ll only be a day older than today.

Jobs

I just submitted my application for my first real, full time, grownup job. I'm still hesitant, of course, but I think it's time. The job I applied for is not particularly easy or laid back, and may turn out to be sixty hour weeks, but it's a job I know I would be good at, really good at, so I decided to apply. We'll see if I even get an interview, but wouldn't that be great if I did?

I still sleep a lot and take naps every other day, but I'll figure something out. I'll just have to get used to staying awake and 100% on all day... One of those things that sounds good, but is not always realistic, but that I end up finding a solution to anyway. Sigh.

I don't know, I'm not sure exactly what I'm saying, or exactly what I'm doing, but I am doing something. We'll just have to see what happens next.

Volunteer

The silver cord was just clear enough to show foggy images of wires inside, producing an overall effect of techy and cool. As far as you can call a USB cord “cool”, that is.

Two ends, one shaped for a USB port - that’s easy, fits into my computer in the hole with the matching picture over it - and one shaped like a square with rounded edges at the top. Hmm, that must be the printer side. I moved my hands around the back of the printer, trying to find the glass slipper to the silver foot at the end of the cord.

After collecting enough dust to let a dust bunny retire early, I pushed the square-ish peg in the square-ish hole, completing the connection to my laptop. I sat crosslegged on the floor in front of the screen, my elbow angled just far enough from the edge of the shelves I’d pushed away from the wall to reveal the outlet behind them. All I had to do then was click print and I’d be in business. Maybe click it twice, just for good measure. I looked at the silent, unmoving printer with mounting frustration, willing it to do its job, but to no avail. Clearly it hated me. I proceeded through each of the tricks I could think of, fudging names and numbers when necessary, but still nothing. Finally giving up (a whopping ten minutes later, fifteen maybe), I sighed and started to scroll down the pdf on the screen: “The Children’s Hospital Volunteer Application”.

I got some good advice from my aunt after writing about my anxieties surrounding starting to work again: she said to try some part time volunteer positions. That way I can get back into a structured atmosphere, possibly even in an office setting, without the stresses of a full time job. It’s a way for me to dip my toes in the water and swirl them around a bit so I can be sure I know when it’s time to dive in. So I read through the application and decided to just drive over to the hospital and apply in person. Maybe that way I could be seen by someone rather than just mailing in a printed out application with saliva on the back of the envelope and a crooked stamp on the front.

The Denver Children’s Hospital is somewhere between and five and ten minute drive from my place, and would probably equate to a twenty minute to half hour walk on nice days or when I had the time. The street in front of the hospital didn’t have any parking meters, so I hopped out of my car and walked purposefully through the revolving door and to the front desk. The front desk happened to be a security desk guarding the space between the hospital on the right and an eating disorder clinic on the left. Taking off my sunglasses, I cheerfully stated that I would like to apply for a volunteer position and inquired as to where I might do that.

“The main campus. In Aurora.”

The main Children’s Hospital campus in Aurora is a thirty minute drive from my place in minimal traffic. I looked at the digital clock on my phone and saw that I had exactly an hour and a half before pilates. Okay, then, Aurora it is, I thought.

And the drive was as long and exasperating as I’d dreamed, hitting every red light on eight miles of Colfax. My foot itched on the break each time I glanced at the arrival estimate on my Garmin GPS navigator and saw it readjust farther and farther away from the time on the clock below it. I thought of the times I’d had athlete’s foot as a kid.

My hands tapped on the steering wheel as I looked for a parking place; my shoes tapped against the tile floor as I made my way through the lobby; my breath tapped quickly in my chest as I opened the door to the volunteer office. “Hi, I’d like to apply to be a volunteer”, I offered almost as cheerily as the first time.

I was handed an envelope with a printed out version of the online application. I should hear back at some time in the future, hopefully.

Second Night Back

Tonight is my second night back in Denver. So far it’s good. It’s really good to see my friends again spend time with them, going on walks around the park, “running errands” at Crate & Barrel, barbequing kebabs under the stairwell and just talking. I do miss my family, but it’s good for me to be around people my own age. My entire apartment is smaller than my parents’ kitchen, but it’s home and I like it. Of course my kitchen table triples as my dining room table and my office, but the wall behind it is lavender – every room is different colors: lavender, yellow, light lime green and deep red (the only one I didn’t pick and can’t paint over). It’s cheerful and homey and more of a haven than a cocoon. After months in my love cocoon, sleeping in my old bed, having dinner every night with my parents, it’s time for me to burst forth as a butterfly, leave the nest, and all of those other growing up clichés.

I haven’t been getting overwhelmed in the same way I used to, where I would shut down and need to extricate myself from the situation as quickly as possible. I do have to remind myself to take naps, though harder than that is actually tearing myself away from whatever I’m doing and make myself lie down so I’ll be able to make it through the rest of the day without glazing over and crashing. With all of the unpacking between reunions, I’ve been much more active than even in the Bahamas. I like it. As long as I do take breaks. It’s good for me to feel like part of society again; to feel like a twenty-something again. Tomorrow, my friends are throwing a little welcome home barbeque for me, complete with all non-alcoholic drinks (save one glass of champagne each to toast my successful surgeries). It’s also Palm Sunday, so I’m gonna go to church, which I’m excited about, but I’ll have to take a nap between the two activities since I’m not allowed to partake in the host’s espresso machine and I’d hate to fall asleep during my own party.

When I opened the door to my apartment for the first time on Thursday, there were flowers in all different shapes and shades of pink as well as a sign saying, “Welcome Home Erica”, signed by my friends in my building. The living room and my bedroom were full of the boxes that Eve brought over from the crawl space in which I’d put them back in November. I couldn’t, and still can’t, believe how lucky I am to have such wonderful friends.

It’s funny to come back home in the mid-afternoon or later at night, tired and ready to start in on this task or that, and have no background noise. No footfalls from different sizes of feet carrying varying weights that each move with their own timbre. No TV playing in the next room. No opening and closing of the fridge; no chopping or scraping; no one building a fire; no one asking where their keys are and saying they’ll be back after fill-in-the-blank. It’s quiet. Until I put on some music, the only sounds are people talking in the open-air stairwells of our building and the one next door. It’s strange living in an apartment that’s empty but for me and my thoughts. It makes me miss my parents, my aunts, and even the two girls who work for my dad’s consulting business. Most of me is glad to be on my own again, but likely it will be like the latter.

Now, finally, I’m completely exhausted and need to go sleep before I fall asleep on my computer permanently.

Good night.

Goodbye Prelude To A Shower

At seven am, Remix To Ignition started to fill the silence covering my bedroom. Starting quietly, it grew and grew, like a weed with tentacles that reached out with a crescendo. I stirred, sleep fading from my eyes, dripping down to be absorbed again by my bed. I rolled onto my back and began to mouth along the lyrics, adding improvised hand motions to illustrate the words being sung (“Give me that toot toot, give me that beep beep” eliciting a train whistle and a honking horn).

When the song was over, I slid the “Off” button and climbed out of bed. I had more packing to do, but first, a shower. Mom and dad’s shower is nice and big and roomy compared to mine – both mine in the house and mine in my apartment – so obviously I wanted to use theirs for my Last Shower. I grabbed my towel and padded down the hallway in ripped plaid pajama pants and a t-shirt that advertised my milkshake as bringing all the boys to the yard. I crossed the familiar threshold into my parents’ room, the room I’d crept into countless times in the middle of the night as a child. This morning I felt like a child again, missing my parents already.

“Ca’I use your shower or do you need it?”

My mom looked at me, makeup done, wearing a black suit skirt under a pajama top, her hair still damp. Dad sat in bed with a cup of coffee and the Journal. Mom’s eyes had the glass and the sad, proud, conflicted smile that only a parent can wear. She stepped forward and hugged me to her, both of us trying not to cry. “I’ve loved having you here. I’m gonna miss having you around.” Her arms stayed around me, no intention of letting go. “You’ve really taken your place in this family, and I hope you hold onto it. We’re gonna make sure you do.” I’ve thought about that many times, wishing hard that the three of us hold on to the closeness we’ve found and being nervous that we’ll lose it. “I love you so much and I’m so proud of you.” The mom look of love threatened to pull tears from my eyes when she stepped back and held me by the shoulders. She went on about how proud she is of me and how much she loves me and all of the other things I try to hold on to and remember so that one day I can treasure them when she’s gone. Even writing about it makes me sad.

Her hair was still damp as she instructed me to call her every day. One more kiss and I turned around the way I’d come to wash up in a shower the size of my whole bathroom.

Packing Tired Cobras

It's my second to last night here before I move back to Colorado. I'm sitting cross-legged under the yellow striped duvet that covers my bed. The left side of the bed is covered with scarves and t-shirts that still have to be packed and two legal pads that I need to find a home for. This morning dad and I picked up some cardboard boxes I found free on Craig's List - three long, skinny boxes with handles, two big boxes and one small square one. I won't need all of them, but as I put everything together, I'm surprised at how much stuff I need to get back to Colorado. Since I'll be back here a couple times over the next few months for weddings and doctor appointments, I'll be able to collect and bring back whatever I leave here, so right now I'm only taking about half of my things. Still, half is turning out to take up more space that I would've guessed. They're all things I've used though, not just superfluous junk, which makes me feel better.

Today I found out that COBRA has decided to reinstate me. I can't begin to say how amazing I feel. A current of nervous electricity ran through me as I opened the email and read, "Hi Erica, I got you approval for reinstatement". An enormous weight was lifted off of my Atlas shoulders. I started laughing in my car, parked in front of my therapist's office, looking, I'm sure, like a total nut job, not quite sure if I should welcome or blink back the tears that waited just behind my eyes. I picked my phone back up and my hands shook as I typed my reply on the little slide-out keyboard. Everything has gone so much better than I could have ever hoped - the surgeries, the follow-up, the insurance - everything. I guess I must've done something right!

I feel like there are so many things I want to write about, so many little experiences, feelings, thoughts that I want to word, like a river inside me that transforms into a sparkling, sunkissed waterfall as it leaves my mouth and flows onto the page. I want to write about packing and the conflicting emotions it brings, knowing that it's the right time for me to go but already missing my parents and my aunts; how I can look in a mirror and like what I see and not feel all of the insecurities I felt in the Bahamas; how I started to use my body again as I walked to the Sea Center (or whatever it's called) in the Bahamas for nine am yoga, and how I almost passed out more than once during that first class but every day got better and better as the young instructor taught patiently in both English and French, ("inspirer, expirer" = "breathe in, breathe out"). I want to write about them all, but not tonight. My heavy eyelids are drooping over the eyes I got peach-scented soap in when I washed my face this evening, which I take as my cue to go to sleep.

Goodnight

Virgin Pina Coladas

I have a song stuck in my head, but the waves are drowning any desire to put it on. The rhythmic crash as they hit a reef or the shore. The tympani crescendo as they near their fatal final destination builds to a clash of cymbals as the white cap overtakes the rolling turquoise and echos as the salty water spreads over the sand.

Since arriving in the Bahamas and settling into the paradise that is the sandy beach, canvas umbrellas over blue mesh lounge chairs, yoga in the sea breeze every morning, 100 SPF sunscreen on my scar and a shaded porch overlooking it all, I’ve only taken one dose of Tylenol. That would be this morning.

Right now I’m at a tall, wood table with a tan, canvas umbrella over me at the Snack Bar. I know it probably has some kind of clever name, but I couldn‘t tell you what it is. As long as they keep making me virgin pina coladas, I don’t actually care.

They’re playing some kind of beachy music punctuated every few minutes by blenders. I did see an older man in a Speedo order a cup of coffee, which I thought was crazy since it’s so exceedingly hot out, but maybe it’s an older Frenchman thing. Apparently all of the French people here leave tomorrow, so tonight there’s a big beach party, where I’m assuming everyone will get hammered except me, since I’m only allowed one drink per night. Very unfortunate since I let myself be a lush on vacations to hot beaches. Oh well, it’s good for me, both physically and psychologically. This way I’m still able to make it to nine am yoga every morning.

We've Come a Long Way, Baby

Tonight was my first night out since the surgery and also my first opera! My dad has a habit of getting tickets for some kind of show and not telling anyone until a couple days before, yet every time being surprised and irritated when one of us says they already have plans. A week ago he told me that he'd gotten tickets to La Traviata, one of the most famous operas by Verdi about a courtesan (wayward woman) who falls in love with a man and their move to the country, tragic separation, and even more tragic reunion. Love, betrayal, a duel - all standard fodder for a romance novel or an opera. Clearly opera is more cultured, classy and includes music, but really the same underlying themes. It was wonderful. I got goosebumps half way through the second act, and when they saw each other in the third act, I almost cried. Our young formerly-wayward, now repented Violetta has tuberculosis, which, in the third act, leaves her weak, pale and lying on the floor by the time she hears that her Alfredo has come to her. A few songs and three additional character re-appearances later, she dies. At another time, I would wax on about the beauty of it, the sights, the sounds, the strong emotion that dripped off of each note as the music permeated the room, but it's 11:45pm and I'm exhausted.

So, the point is that we've come a staggeringly long way from 1853. Throughout the show, as Violetta's tuberculosis grows worse and there's nothing anyone can do to cure it, I kept thinking about how easily it could have been fixed today. "Consumption", as they called it then, is on the whole little more than a vaccine you get as a kid when you start school and never think of again. If you cough up blood, it's a sign to go to the doctor and get a swab test and a ten-day pill regimen, not a death sentence.

In 1853, I certainly wouldn't be here. I would have untreated epilepsy, which from what I learned when I was briefly off of medication as a kid, would most likely be generalized tonic-clonic seizures, not the simple partial that I've grown so accommodating of. I probably wouldn't be able to function as a full member of society, and there's certainly no way my parents would've been able to marry me off unless they were exceedingly rich and able to make it worth my future caretaker's time. Who knows, I might not have even made it to twenty five. But here I am. Five weeks after having half of my head taken off and the origin of my seizures residing in a petri dish somewhere, I'm sitting in bed under a yellow and white striped duvet from Ikea and about to stream season two of Lie to Me off of Netflix. Look what a hundred and fifty eight years has done to us. Medicine grows and evolves so quickly, and so constantly. I often take heart from that. In case this surgery doesn't work, something that will work is on its way, coming soon to a neuro office near me.