Coming Back

It's hot here today. I open the door to my car and the air ripples like water, distorting the images behind it and hitting me with a wall of heat. As much as I feel bad about escaping the beautiful sun to sit in front of my air conditioner with the blinds closed, I do so because I don't do well in heat. As the temperature rises, I get lightheaded and weak. I have to stand up slowly, often holding on to something so I don't fall over. Instead, I sit on my couch with my computer and take a cold shower before going to bed and trying to fall asleep. I feel guilty, but not guilty enough.

Mild allergies notwithstanding, I've been feeling pretty great lately. Any headaches I get are focused on the left side and go away quickly with Tylenol. Slowly but surely, my bone is growing back. It's a wonderful feeling to not miss the hours spent on my couch or in bed nursing a pain that won't go away. I'm really here. I never thought this day would come.

Yesterday, I spent the day helping John pack cardboard boxes from a coworker and colorful bins from Home Depot full of his worldly possessions and label each with its contents and Storage or Not Storage. I lifted, carried and sweat through trips to and from the car, apartment and storage unit. And I felt great.

Recovery has been a long road, full of setbacks, frustrations and disappointments, but I feel like I'm really here, on the other side of it. I'm still careful with myself, observing my one year embargo on biking, skiing, tubing, etc., but I can lift, hike and concentrate and actively function for a whole day. I'm finally back.

Filters

My posts begin in my head. Murky thoughts swirl like the hot, dense fog that precedes a planet. I watch them spin and even though I can’t say what they are, I begin to pay attention to how I feel. I look at the multicolored bowl of granola sitting on the table in front of me; I decide if I want neutered (decaf) coffee, tea or grapefruit juice; I read my mom’s handwriting on the sticker covering the Amazon box containing my replacement Kindle, all the bar codes scribbled over in marker. What do I feel? Hungry? Full? Tired? Homesick? Suddenly, words form from the mist, arranging and rearranging themselves in my head, impatiently knocking at the door to my fingers as they search for a keyboard with which to purge themselves. My thoughts begin to solidify and suddenly they’re pouring out of my fingers, spilling onto the page, splashing against the margins. Everything comes out. The flood gates open and everything inside of me comes out. I can’t help it.

But now things are different. Now I’m looking for a job again. I can’t just say everything I think, everything I feel. Suddenly I see that I need to filter myself; I can’t post anything that could put my job hunt in jeopardy. How can I assure someone that I’m ready to start working again if I turn around and write about a debilitating headache I had the day before? I have to think of these things. I hate having a filter, having to censor my mind; it doesn’t feel right when for so long this has been my personal therapy, the place where I’ve laid myself bare for the world to see. More than once, I’ve put up a post just to take it down a few hours later when I realized it might be too honest, make me too human, too vulnerable to scrutiny. And it kills me, because when I started this, all I wanted to do was be honest, human, vulnerable, real. I wanted to feel scared, happy, excited, frustrated, in pain. I was raw.

I still write it all, and I can put it in the book, but until then, I’m learning to struggle against the desires that broke the chains of my inhibitions, privacy, independence nine months ago. I felt free and wild as I wrote about my most intimate thoughts; it was wonderful. Now I’m trying my damnedest to edit myself, to say what I want to say without saying it. I don’t know what that means, but I want to. I’m trying to learn. I’m trying not to feel trapped.

Work Through the Pain

I blinked bleary eyes, trying to see the neon green numbers on the alarm clock from my horizontal position on the bed. Nine am? I must've slept in. I flipped onto my back, trying to decide whether to wake up or keep dozing. Dozing fought valiantly, but my guilty conscience won, admonishing me for lying in bed so late. The cat had no desire to cuddle with me, so I resigned to getting out of bed. And then it hit me. As soon as I sat up, pain shot through my head; a lightning bolt through foggy sky, disrupting the air around it and sending shock waves through my body.
"Are you okay?", John asked.
"I don't know", was all I could reply. I stood up slowly, holding onto his shoulder to steady myself as he watched, concerned, from his perch on the foot of the bed. I reached for Tylenol, a constant staple in my purse, but bending over just made it worse. I clutched the left side of my head, straightening as quickly as I could, and took the water from his outstretched hand. I swallowed the two, white pills with the ease of a veteran and hoped they would work.
"Honey, why don't you just stay here and rest", he urged. Lying down would be nice, but, stubborn as I am, I insisted on driving home. I promised I'd be fine, the drive is less than five minutes, I'll be sitting down the whole time. "Okay," he conceded, "but don't make me regret this."
I haven't had a debilitating headache in a long time. I'd woken up on my left, but had only been that way for an hour. Normally I can handle that, lately, at least, but I guess I'm just touchy. Heaven forbid a day passes without remembering my surgery.
I made sure to turn my head slowly as I backed out of my parking space and turned right onto the street. As long as I moved slowly I was okay. Okay-ish. What hurt more than driving was carrying everything up the stairs to my third-floor apartment: purse, backpack with computer, bag of last night's dinner and a key lime pie we'd made for dessert. My knees went weak and my head throbbed at each landing. All I kept thinking was that I'm going back to work. Erica, if you're gonna start working again, you have to push through it, nagged at me.
"Beauty is pain, honey", is what my mother told me when I was learning how to walk in heels. But life is pain. Life hurts, but I can't let it stop me from living. What I need to do is work through the pain, because it's not stopping anytime soon.

Creeping Insecurities

Six months ago yesterday I had my last seizure. I never thought I would say that. I really didn't. This milestone - half a year - brings me both calm and fear. I feel reassured having stayed seizure-free for so long, affirmed in my belief of success, trusting of my body. But what if my body betrays me? Over the past week or so, I've been getting strange sensations in my hand. Mostly it just feels weak, but it reminds me of what I used to feel as part of what I called a "micro-seizure". The past few mornings have brought with them a feeling in my head almost like a cd skipping; I turn my head but the scene takes a split moment to catch up, leaving me on edge, reminded of a feeling I used to get. What if it didn't work? What if these last six months have just been a vacation and real life is waiting for me around the corner? I'm terrified. I'm exhausted from worrying, testing, cutting, recovering, and worrying some more. Will it ever really be over? When will this fear that waits in the wings and grabs me like a vice leave? I pray over and over every day that the seizures really are gone; I pray for comfort and assurance and peace. I ask God to keep me safe and dispel the small, sharp, creeping insecurities that prey on my mind like a parasite. Please, please let it have worked. I've come so far, please don't take it away.

Six Months

Mom, dad and my lovely sisters,
Six months ago today I had my last seizure. In many ways the second surgery was scarier than the first and was by far the most painful. Mom and dad were with me, a command central updating the vigils held in Boston and Seattle. This wasn't easy for any of us, and I want to say thank you to you all. Thank you for giving me the strength I needed to get through this and the prayers that made all the difference.
Love you always,
Erica

Before and After: Surgery #1

Six Month Anniversary

The deep throbbing just behind my left temple beats a syncopated rhythm into my head. I chase two Advil gel caps with grapefruit juice and hope that it goes away soon. The headaches are fewer and farther between these days, but every once in a while they come out, reminding me that six months isn’t as long as it used to be.

I spent the morning job hunting: getting back to emails, contacting anyone who might know someone, applying online, scheduling an interview. Cooking, cleaning and writing fill out my to do list for the rest of the day. As I take a pen to my green notebook and fill it with, “email so and so”, “unpack suitcase from Minnesota” and “print out shipping label for Kindle return” and cross off, “exchange printer ink and get printer paper” and “put in maintenance request for air conditioner”, I can’t help thinking how different my day is from the same one exactly six months ago. At five thirty am on January 20th, I ran through the early morning dark, bundled against the negative twenty degree weather in a black puffy coat and boots, to the hospital across the street from my hotel, mom and dad in tow. We scurried along the perimeter of the building, trying to shield ourselves from the wind, and picking up pace when we rounded the corner and saw the light from the entrance. My nose started to run as soon as we stepped inside and I jumped the admissions line to get a Kleenex from the desk. The weather in Denver today mimics the difference between that day and this: ninety degrees and mostly sunny. When I step into the air conditioned inside, I notice the sweat on my body and crave a shower rather than a Kleenex.

As I look at the clock on the bottom right corner of the tool bar on my computer, I wonder what was happening at 10:26am that day. I was in surgery by then. My head had been shaved and placed in a vice. I put aloe on the oval-shaped scar on my forehead from that same vice this morning. I put aloe on the scars on my left hand and wrist from the IVs that pumped the anesthesia into my body. The surgeons cut through my scalp, pulling it back and removing a quarter of my skull with a saw. At 5,280 feet above sea level, the atmosphere in Denver is thin, so I’ll put spf 50 on my semi-circle scar before I go out, even though my hair has grown to almost three inches and mostly covers it.

Over the next few hours, 180 electrodes would be placed on the surface of my brain. The email my mom sent to our family between rosaries conveyed the updates given her by the nurses. The email she sent me this morning included an invoice from a follow up appointment I had in June that’s still being processed by my insurance. She said she’s at the office catching up on work from last week when she and dad were at the cabin with me, my sisters, my nieces and nephews, brother-in-law, and boyfriend. She says the weather there is still really hot and muggy.

My parents got to see me around 3pm. I was still coming out of anesthesia and don’t remember it, but they were there. Today at 3pm I have a phone interview scheduled. Somehow, more exciting than that is that I slept on my left last night! In the hospital, I couldn’t even turn my head to the left; I made everyone who visited me sit to the right of my bed so I could see them without putting any additional pressure on my fragile, skull-less brain. For the better part of twenty five years, I’ve slept on my left, but for the past six months, I’ve had to sleep on my right to spare my tender head. Waking up on my left side at 7:30 this morning felt amazing. Absolutely amazing.

I guess, in summary, I have a ways left to go, but in the last six months I’ve been given a new life. My body is lighter, sweeter, and I’m happier than I can ever remember being. I feel loved, blessed and so grateful.

Seams

It is the seam on the circle of life that is at once so terrible and so wonderful.

One Down!

Today is my first day off of Lyrica! I only started decreasing it a week ago, but already I feel like I have more energy. Maybe that's a placebo effect, but I honestly don't care. I've been so tired and missing caffeine like crazy, so every little bit helps. I can't believe that this is really happening. The doctors told me that if I made it six months seizure-free, I could get off of one of my three seizure meds, and if I make it a year, I can get off another. It's a couple weeks early, but I can't believe I've gone this long without a single seizure. It's really real, isn't it. Huh. Wow. I never thought that the day would come where I really was seizure-free and could get off of my medicine. Granted, I'm most likely going to be on medication for the rest of my life, but it'll just be a small dose of one medication, not three.

I get so nervous sometimes that maybe it hasn't gone away, maybe it'll come back. My right hand is still a little weak, I'm probably at 90% or so, and every time I notice it, I worry that maybe I'm about to have a seizure, maybe I am having a little seizure. But I'm not. Sometimes I still can't believe it. But this time it's real. I'm really getting better.

I still get headaches and I still can't sleep on my left side, but overall I'm feeling really good. When I was first researching the surgery, I never would've imagined that it would take so long to recover, but I guess it does. I've been out of work since October, which seems crazy when I think about it. Nine months. What have I been doing for the last nine months?? I guess a lot of sleeping, popping pain pills, researching, testing and writing. Life has kept me pretty busy, but in the last couple weeks I've started to get bored. I'm ready to go back into the workforce. I'm ready to get a job again, be a productive member of society. A paycheck wouldn't hurt, either. Now it's just a question of figuring out what I want to do with my life and getting someone to hire me... Easy peasy...