Tracing Scars

Last night I sat on my red couch with the cushions in need of re-stuffing, my bare legs folded to the side as I leaned my weight to my elbow as it rested on the squishy arm. A thick book lay open on my lap, a glass of ice water on a coaster within reach. I fingered my scar as I read, feeling the divot grow deeper and more pronounced the farther back I reached. I traced the bumpy ridges that betray the titanium plates that lay under a shallow layer of scalp, holding my fractured skull in place as it heals. A couple thick hairs grow straight out of the scar, short and spiky as they twist their way through the former home of staples and gauze. Overall, I can't believe how much my hair has grown since it was shaved in January, my scalp dyed yellow from the surgical iodine, scabs forming over the spots rubbed raw from the vice that held my head in place as it was sawed open. Today, my scar isn't even visible unless I pull my hair to the sides, away from its severe middle part. It curls its dark brown way over my ears, ending just below my earlobes. The scar feels deep and dramatic to my fingers, though I suppose most cuts and scrapes do, all looking much less impressive when finally viewed in a mirror.

It hurts to touch my scar for long, pain spreading to the growing bone beneath, so I drop my hand and turn the page. The incision is really the only part that hurts these days. I can't lie on my left because it's still too tender, but as long as I avoid pressure, I'm mostly okay. The skull remodeling itself around the plates and screws does still hurt. Two or three times a day, I make my way to the basket of pills in my bathroom or the bottle of Advil in my purse to ward away a quick, sharp pain or a low, dull one, my bones creaking and scraping together like the wooden floors of an old house expanding in the summer heat. Fortunately they're working, quieting my mind and smoothing out the winces on my face in a matter of minutes. It's been a month since the last time I was put out of commission and relegated to my couch for hours. I'm starting to see that I've turned a corner. Just five more months until I can get off another medication; five more seizure-free months until my chance of relapse is less than ten percent. At the same time it's gone so slowly and so quickly. It feels like only yesterday I was in my parents' home, the timer on my phone set to my daily Percocet regimen.

An hour later I woke up to a shoulder wet with drool, still sitting with the book on my contorted legs, my limp fingers brushing the back of John's shirt. "Honey, wake up, it's time to go to bed."

My Epilepsy Story: Mothers

I found this blog today and one post in particular struck me. I think about my own mom and how amazing she's always been, supporting me and my epilepsy even while she was scared herself. She sat by my bedside in the hospital and held my hand, making up stories to keep my mind off the pain. So to all of the moms out there, whether your kid has epilepsy or the flu, we thank you for taking care of us.

My Epilepsy Story: Mothers.....: Lately I have been blessed to meet mothers that inspire me.... As I listen to these mothers talk about the challenges that their children ha...

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!

Talk About It! Blog

Hey everybody, the organization Talk About It! helps raise epilepsy awareness through various celebrities. They just started a blog and I wanted to share it with you! http://talkaboutitorg.ning.com/profiles/blogs/taiblog1

Pressure

My phone chimed the arrival of an email and I realized my eyes were closed. When did that happen? I lifted my head, leaving a face-shaped grease mark on the pages of my old accounting text book. I thought of how many similar stains remain on the pages of my college texts and hand outs and wondered briefly where they all are these days.

I'd been thinking about what to do with my life (as I do every day) and thought about accounting. I like puzzle solving and I'm good at pattern recognition, so why not? I literally dusted off Financial Accounting Edition 9 and the mostly empty notebook under it and brought it over to my kitchen table - my job finding war room. As I read through the faded highlighter, I realized how rusty I was. Was it really worth it to try to re-learn accounting? I might not even get an interview for a job that requires it. Maybe I'll cross that bridge when I get to it; I know I can get it all back if I put my mind to it. As long as my mind is awake, that is. My eyes started to droop again.

I went to the doctor a few days ago and got a proper standard check-up for the first time in at least two years. I figure I've seen enough doctors to last me a lifetime, but besides a cursory am-I-healthy-enough-to-have-surgery look over, they've only been looking at my head. A slightly older nurse led me back to a small office off of the waiting room. I stepped on the scale, deciding that my clothes obviously weigh a considerable amount, told her my history and slowly listed the names of my many medications as she looked each one up on their new computer system. As I spelled out each medication and waited for the dusty computer to recognize it before repeating the dosage, I kept thinking how much quicker it would be if I were to just write it myself. Ten minutes later, she lifted a stethoscope and pressure cuff off the wall to take my vitals. Pump, pump, pump, the air squished out of the rubber bulb and into the growing black band that was cutting off my blood supply. I've always hated having my blood pressure taken - I keep thinking about how it has to collapse my arm artery, which freaks me out. Finally, mercifully, she deflated the cuff and pulled away the Velcro. "Is your blood pressure usually really low?", she asked. "Um, yeah, it's generally low", I replied. "Okay, I just wanted to check that my cuff wasn't broken"... ??? "What is it?", I asked. "Ninety over fifty". What? That's low, even for me. But suddenly it made sense: the fatigue, the heat intolerance, the head rush every time I stand up, the fogginess in my mind. I don't have blood in my head!

I told John about it on my way out and when he got home, he spent a good twenty minutes online trying to find out how to increase blood pressure. Lie on my back with my feet up in the air; work out lightly to get the blood flowing; avoid stress, as it makes your veins dilate; eat salt; cross my legs. That night I lay on my bed, feet propped up on a three-pillow tower, feeling my mind return to me. I took some Advil to relieve the pain of the building pressure in my head, thinking about the trade-off between blood in my brain and pain in my head. Lately the pain has only been along the incision as my skull grows back together, bone fusing to bone, remodeling around Titanium. Soon it will be nothing more than a scar, white on white. Soon. In the meantime, I'll wait on my back, legs crossed above me.

"Upside Down Girl"

As I pressed my feet into the leather straps, my arms lying at my sides, I re-positioned my shoulder blades underneath my back to hold my weight away from my head. Pressing my triceps into the mat, I took a deep breath and swung my legs up, toes in line with my nose, a leg's length above me. My whole body tensed as I focused completely on keeping my 130 pounds of pressure off of my head. I curled my torso to lay each vertebra down in turn, completing the move by bending my knees and pulling my heels back toward my body. "Short spine massage", that's what it's called. Short spine is one of my favorite moves in Pilates, but most days I can't do it because of the pressure it puts on my head. I've adopted various ways to modify moves that would otherwise take me upside down, because if I don't, if I'm stubborn and do them anyway, I get a painful, throbbing reminder that my skull is still growing back together. Even hanging my head down pools blood in it, leaving me shooting my hand to the left side of my head to steady myself, as if my touching my head I can make the pain go away.

Today before by 4:30 class, I unscrewed the child-proof cap of the Advil bottle in my bathroom, downing two gel capsules with stale water as I ran out the door clad in black lycra-spandex and a gray tank top. I've gotten in the habit of taking Tylenol or Advil as a preventative measure before Pilates or yoga. It does help, even if my over-ambition this afternoon left me with a headache. Still, it was worth it to be able to do more, do everything the other students do. So many days I sit there, envious, as they contort themselves, balancing on their heads and shoulders while I do various core-centric leg lifts. But not today.

I've been thinking lately about my current limitations within Pilates. I want to, and am planning to, do the instructor training program that starts this fall. Pilates is like my own personal therapy, teaching me how to control each little muscle in the body I felt betrayed me. If seizures made me feel helpless, Pilates made me feel powerful. I want to give that confidence, that reassurance that we still have control, to others. The only problem is that I have to be able to do all of the moves through Level 5. Right now, I can't do that; I can do modified versions of almost anything, but as soon as I have to go upside down, it all depends on how my head is feeling that day. I'm just hoping that by the time the next class starts, I'll be able to keep up.

I smiled as I extended my legs over the lowered reformer bar. I did it. I did it and I felt great. My instructor grinned as she walked over to me, "Look at you! You're upside down girl today!"

Quick FYI

I changed the Twitter account to: lvngnbrnstrm - Living In a Brainstorm without ANY vowels. Enjoy!

Pilates and Ice Cream

Finding a job is hard on your confidence. I was overflowing with pride, self-worth and the belief that I could do anything just a few months ago. What happened to that? How can I get it back? I did so much, survived so much, but the biggest challenges to my confidence are only beginning.

I need a good pep talk. And maybe some pilates and ice cream...

Twitter

Check it out, I'm on Twitter: @lvngnbrnstrm. "Livinginabrainstorm" was too long, so I took out all of the vowels. Despite being a blogger, I really have no idea how Twitter works, which may or may not make me an embarrassment to the blogosphere. Either way, I'm planning to use it to send out various little ideas or quote I come across that help me to stay positive and healthy as I continue to recover and live in this wonderful world. Also, for anyone in the Denver-ish area, the Epilepsy Foundation of Colorado is putting on an event called Living Well with Epilepsy at the Denver Botanic Gardens on November 5th. You can check out their website for more information.

Homesick

It's my mom's birthday on Monday. As I knelt on my beige, mock-shag carpet, using my nightstand with the warped "wood" as a hard surface, I wrote her a card. The card itself is insubstantial: a picture of a guy at a gym on the front and when you open it up it asks you what color his gym bag was. But it was the note inside that brought to the surface a feeling I hadn't been able to place, though it's held over me for days. I thanked my mom for taking care of me, driving to Rochester and back over and over; seeing Tangled with me on Thanksgiving at a small theater near our motel the night before my monitoring started; sitting by my bed and feeding me when I was too weak; telling me made up stories to take my mind off the pain; putting cold washcloths on my face; slathering butter on apple cinnamon muffins to get more calories into my thin post-surgical body; playing Bananagrams with me; and all of the other things she did for me every single day. I'm homesick. I'm homesick for the time I spent with my parents in my "love cocoon", not worrying about life, not anxious about my future, just focusing on healing - both physically and emotionally.

I spent today looking for and applying to jobs. I found them on Career Builder, Job Finder, searching through the top employers and top companies to work for in Colorado. I networked, sending out emails and setting up meetings. I dealt with the IRS, which is auditing my 2009 taxes and says I owe them five thousand dollars in capital gains taxes even though I had a loss, not a gain. I feel like the sharp edges of life are coming forcefully into focus; right when I accepted blurry watercolors, they were gone.

Share Your Story

Sometimes living with epilepsy can be lonely. Despite how many of us are out there, people don't talk about it, and it can leave you feeling like you're the only one. I promise, you're not. I know one random girl in Denver telling you you're not alone might not mean much, but it's true. We're all around. We just need to open up and talk about it. When I started to tell people about my epilepsy and how I deal with it in my own life, people started to come out of the woodwork; it was amazing and truly touching, and it continues today. When you share yourself, you help others to do the same, and a bond is created; a bond that can't break, because you helped each other stop hiding a piece of yourselves and thereby live life to its fullest. You can't really live if you're busy spending your time and energy trying to keep yourself a secret. As soon as you can come to terms with your epilepsy and accept yourself for all that you are, not just the parts you cherry pick to display, a weight lifts off of your shoulders and suddenly you feel free.

The Epilepsy Foundation of Colorado has an ongoing series called, Share Your Story. In each newsletter, people with epilepsy talk about living with it - the struggles, the challenges, the silver linings. Check out the most recent edition (I'm in it, too!): http://www.epilepsycolorado.org/index.php?s=10796.