The Worst Day that Became the Best Day

or how figuring things out and blundering on when I felt like utter shit was a major milestone.

It was a bad day.  It was August and I had one of those summer colds that attacks relentlessly and refuses to let go for at least two weeks.  I'd been up all night coughing and snotting and being generally disgusting.  And I had a doctor's appointment with my neurologist that morning.  Early (ok, everything before noon is early) that morning.  About two hours before the appointment, I came to the realization that I just was not going to be getting any sleep, so I got up and took a long, hot shower in the vain hope that it would clear my sinuses (it didn't).  Then I got dressed and looked for my doctor's address and bus routes to her office on the trusty internets (never trust the internets, kids).

Needless to say, I took the wrong bus and got lost and walked much more than a person who feels terrible should walk, especially in direct sunlight.  I finally found another bus that was going in the general direction I needed to go, so I climbed aboard and hacked and sneezed while everyone on the bus avoided eye contact and wished for hand sanitizer.  I reached the address I'd written down, but it was sadly out of date.  No one I asked seemed to know where my neurologist was now practicing.  So I wandered around looking sad until I saw another doctor (or just a guy hanging out wearing a white coat) and I asked him.  He said he wasn't sure, but he thought she'd moved to another building nearby, and he pointed out the building.  LUCK!  I had had luck!

I went into the building, and lo! my doctor did have an office there.  So I attempted to check in with the receptionist.  But the receptionist told me I didn't have an appointment that morning.  She said, in fact, that my appointment wasn't until that afternoon.  I think that's when I started to cry softly.  I was just so tired and sick and full of snot.  So I asked the receptionist if I could please lie down somewhere until the appointment because I knew that if I went home I would not be able to muster the energy to come back.  The receptionist looked worried and disappeared into the back of the office for a while.

When she came back she told me that the doctor had agreed to see me that morning during her free time.  More good fortune!  I wouldn't have to make this trip twice.  So I slogged my way through the interview with my doctor.  Yes, I was taking my meds.  Yes, I was still having seizures.  No, I wasn't having them more frequently than usual.  Yes, I was feeling all right; I just was tired and had a cold.  It was an ok doctor's appointment, though I think she may have been confused at having a teary, snotty, coughing epileptic interrupt her free time.

By the time I left, I was starting to feel better, but I still felt a little fragile.  I went to the corner to wait for the bus, and that's when I tripped.  I tripped over nothing.  I just fell down.  And I tore my knee wide open.  And it bled everywhere.  And then I started sobbing and could not stop.  I just sat down on the sidewalk in front of the bus stop and sobbed like a child.

Two voices in my brain started dueling then: "Hilary, you idiot, you've had a rough enough day already.  You do not need to deal with public transportation.  Call a friend.  Ask for a ride."

"No.  I can do this.  I just need to take the bus and make it home."

"You have a horrible headache and being out in the bright sun will only make it worse.  Riding the bus will take at least half an hour.  If you call a friend, you can go home and go to bed in just a few minutes."

"No.  I can do this.  I just have to get on the bus and go back home."

"You are bleeding.  Anyone would understand you asking for a ride."

"Shut up, brain.  I'm taking the bus home."

And the bus pulled up.  The bus driver looked down at pitiful little me, sobbing and bleeding and arguing with my brain at the bus stop.  I climbed into the bus and searched my pocket for my transfer.  It was gone.  I started to cry harder.

"I lost my transfer."

"It's ok.  I'll give you a new one."

The bus driver gave me a new transfer as well as several tissues to clean up the blood that was covering my leg.  For some reason, the particular bus I'd boarded was full of Asian tourists who were all looking at me rather curiously while I cried and cleaned up blood.  I half hope a few got pictures because I'm sure it gave them an interesting story.

Once again I got off the bus at the wrong stop.  I walked down a tree-lined street, looking for another bus stop that would take me home, or at least closer to home.  And that's when a bird pooped on me.  A bird pooped on me, and I'd already thrown away the tissues I could have used to clean it up.  This was literally adding insult to injury.  So I argued with my brain again.

I finally found another bus stop and waited there while the bird poop dried onto my skin.  The bus pulled up, I asked for tissues, and I attempted once again to clean myself up on the way home.  We neared my building, and I got off the bus.  I started to walk my regular route to the complex, but the road and sidewalk were closed for some sort of construction project.  So I just turned around and found another way.

When I finally got back to the apartment, I was really, truly happy.  I scrubbed myself with soap.  I put antibiotic ointment and an Angry Birds bandaid over my wounds.  I went over my eventful journey in my head.  And then I laughed.  I laughed because I made it home on my own on a truly awful day when I felt terrible.  I literally made it through blood, shit, and tears.  I could have asked for help, but I didn't ask for help.  And it turned out that I didn't need help.

I've had plenty of really bad days before that day and since that day.  I've had days in the hospital with my head wide open.  I've had days glued to the phone waiting to hear if someone was alive or dead.  I've had days on which I've received terrible, terrible news.  I've had days when I've been accused of horrible things. I've had days when I've done horrible things.  But this awful day was a turning point.  It was the day when I realized I could deal.  It was the day when I realized I was not helpless.  It was the day when I took control.

In My Mind

Fourteen years ago, I woke up in the hospital.  I was a senior in high school, and I'd just come home from a trip to audition for a drama scholarship.  I'd felt awful during the entire trip.  I'd had a bad cold, and I couldn't sleep at all.  I'd finally come to my own home and I'd fallen asleep in my own bed.  But I woke up in the dingy little hospital that served our county.

My mom told me I'd had a seizure.  I was confused and tired and sore, and a little bit panicked.  This had happened before, but it had been so long ago.  I hadn't considered that it could happen again.  When I was six, I'd woken up in that same hospital after a seizure, too.  After tests and tests and tests (it seems like a lot in my memory, but I was just a little child), we found out I had a cyst on my brain.  I'd had surgery.  It was gone.  I was fine.  Or I was fine until my senior year of high school.

I was terrified in the following couple of weeks.  I wondered if somehow the cyst had come back.  I wondered if I would have to have surgery again.  I wondered if I would die.  I don't remember things very well (thank you, phenobarbital!).  I remember my friends trying to cheer me up.  I remember that I would sometimes start crying during class, and my best friend, with whom I had most of my classes, would take me out into the hall and sit with me until I felt ok.  That's how I ended my senior year.

The doctors did eventually tell me that they'd discovered I had a bit of scar tissue where the cyst had been.  It was probably causing my seizures.  And they gave me meds.  And when the meds didn't work, they gave me more meds.  And if they continued not to work, they gave me different meds.  Meds that made me sleepy, meds that made me sad, meds that made me gain weight, meds that made me lose weight, meds that made my hands shake, meds that made me forget words, meds that made me unable to concentrate.  I had so many meds.  For eight years, I tried so many different meds, and the doctors kept saying they'd find something that would work or a dosage that would work.  And when I would get so sleepy I couldn't drag myself out of bed, they'd say, "Have some caffeine.  Drink a diet coke."  And when I was drinking two liters of diet coke a day but still couldn't keep my eyes open, they'd ask if I really wanted to get well.

Well.  Of course.  But things take their toll.  Epilepsy tends to breed depression, and depression and epilepsy can be a pretty awful combo.  The prevalence of suicidality in those with epilepsy is astounding (read this.  It's worth it, and I'll wait here while you read).  And I was not exceptional.  As my seizures worsened and became more frequent, I got more and more depressed.  The body that I'd once felt so confident in became my enemy.  I never knew when it would attack.  So I attacked it.  I developed an eating disorder and I made a couple of suicide attempts.  Every day for about five years I was angry and I was sad and I did not want to live.

In time I overcame the eating disorder with the help of an amazing therapist and because I worked damn hard.  I had brain surgery two years in a row (2006 and 2007) to try and get rid of that pesky little clump of rebellious brain cells that was causing so much trouble, but neither time was successful.  In 2007 I also got a VNS.  I had high hopes for it, but every time it went off, I was in excruciating pain.  I had the doctor turn it off less than a year later.

I'm not sure how the change happened.  It was early in 2008.  I was getting caught up in the excitement of the political season.  Over the years I'd become much more liberal, but my community (I still lived about five miles from my parents) was extremely conservative.  I felt out of place in my town, but I was finding people o line with whom I felt like I could connect.  This hadn't happened in years.  I'd cut myself off from other people for so long, and suddenly I was noticing people I understood and who understood me.  It felt like a miracle.

I'd been religious all my life to this point.  I went to church, read the Bible (while taking notes) cover to cover a few times, I prayed all the time.  But things were feeling wrong.  Every time I went to church, I only cried.  I would go into the restroom and cry through the meeting and then go home.  Just entering the building soon became a trigger for my eyes to fill with tears.  I finally had to admit that I'd lost faith.  I had to admit that I'd rather not believe in God than be angry at him/her/it.

And it helped.  It was disruptive.  Things boiled over in my family and with some of my friends for a bit, but they calmed down eventually.  And that was the beginning.  That's when I realized I could start removing things from my life if I found they were making me unhappy.  I could remove them and I didn't have to feel guilty about it.  With epilepsy, there isn't always a lot I can control.  But I can control some things.  Finally letting go of the things I couldn't control was epic.  Finally taking control of (at least some of) the things I could was astounding.  I wasn't helpless.  I didn't realize that before.  Figuring it out was so good.

Things are good.  They aren't perfect, but I wouldn't know what to do with perfect.  My apartment is messy, and some of my relationships have frayed ends that need a bit of repair.  I probably have a really bad credit score.  But I'm attending college again.  I have an adorable messy apartment.  I moved far away from my parents, but we still talk because moving helped our relationship immeasurably.  I have wonderful friends.  I have a special someone who makes me very, very happy.  I have two wonderful and obnoxious cats.  I am happy more often than I am sad, and when I am sad, it isn't that dragging, dreadful depression.  I haven't felt suicidal in years.  Everything is beautifully, wonderfully imperfect.  Things aren't how I planned them, but they are so very much better.