Managing the Illness

When I was diagnosed with epilepsy, I knew nothing at all about managing epilepsy.  I didn’t really understand that there was anything to managing it beyond taking my meds.  My doctor didn’t tell me much.  All I learned was that I needed to take my medication, that I couldn’t drive, and that people shouldn’t put anything in my mouth if I was having a seizure (people still have misconceptions about that last one).  And, shame on me, I didn’t bother learning anything about managing my illness.  So I went through quite a few years during which I was constantly damaging myself during seizures and suffering the consequences of the anger and depression that came along with my sudden disability status.

I’m going to share with you what I learned because I don’t want anyone else to have to learn the hard way.  Learning the hard way really, really sucks.

For a very long while, I didn’t even think about the dangers posed by my immediate environment if I were to have a seizure.  In an almost unequaled act of idiocy, I had an open trunk with a metal edge beside my bed.  Of course during a seizure I fell off my bed and hit my face against that metal edge, and because my head likes to do lots of swinging back and forth during severe seizures, I hit it repeatedly.  For a couple of weeks, I got to live with horrified stares when people saw my face covered in terrible cuts and bruises.  I learned enough from this to move the trunk away from my bed, but I still didn’t think very much about the risks posed by my environment.  I can’t even remember all the things I hit my head on and damaged myself with.  But eventually I learned.

I learned to sleep in a double bed instead of a twin because I was less likely to fall out of a double bed during a seizure.

For a while, I brushed my teeth in bed because my seizures were orally triggered and having a seizure in the bathroom is hell (tile, ceramic tubs, sinks, toilets--lots of places to damage the old noggin).

I learned to avoid spending too much time on stairs. Falling down stairs during a seizure is absolutely horrible.

I learned to look for apartments with carpet rather than wood or tile floors.

I learned that it’s a good idea to tell friends and teachers that I have seizures and let them know what to do if I have a seizure.  This is something I don’t really like to do.  Sometimes I hate it.  But it is the wisest course of action.

I learned to stand up for myself when people thought that my disability made me weak, stupid, or incapable.  And I learned to do it in a diplomatic manner.

Now I’m going to address the emotional side of the disability issue, and how I learned to deal with that.  Because there is always an emotional side, and it always needs to be managed.

As I’ve said before, I was angry and depressed when I got my diagnosis.  For a number of years, I was suicidally depressed.  I’m sure part of this was because of the meds.  Seizure meds are well known for causing depression.  But I also know that a lot of it was because I saw the change from “able-bodied” to “disabled” as an ending.  I thought I didn’t deserve it.  I thought my dreams would die.  I didn’t want to accept it.  I was very angry.  I lashed out.  I lashed out against myself.  I lashed out against my body by starving and hurting it.  I lashed out against my family and friends--the people who loved me most and who actually were there for me during this horrible and bleak time.  I am so ashamed when I remember the pain I inflicted on them.  I love them so deeply, and they love me, but I hurt them.

Depression is a master deceiver.  It affects us viscerally.  It changes the way we see.  The world literally appears darker and gloomier.  I was trapped in depression.  I was paranoid.  I was afraid.  I was angry.  I could not feel love.  Looking back, I can see and understand how much love I was receiving.  But at the time, I could not feel it.  It’s like there was a wall around me, and the love could not make it through the wall.  So I lashed out.  I had no idea what to do.  I had no idea how to react.  I only knew I was in pain.  And I needed someone to stop the pain because I didn’t know how to do it myself.  And when no one would stop the pain for me, I grew angry.  I yelled and screamed and cried and accused.  And nothing got better.

Somehow, I don’t know how, I started to get better.  I will give myself credit for working hard.  I went to therapy for about ten years.  I recovered from a severe eating disorder.  I started to learn about my triggers and how to control myself.  I remember the turning point.

I was on Ambien shortly after it came out, before the public knew about all the terrible side effects.  I was living (somewhat happily, I thought) with a set of roommates over the summer between semesters at school.  Then one day my roommates packed up and left.  I was called to the dean’s office, where I was told I had misbehaved horribly.  The dean listed off a set of accusations, telling me that my roommates had informed her that every night my actions toward my roommates were bizarre and unsettling.  I was told to go home.  I was no longer welcome in student housing, and I was on probation at the school.

I was crushed.  I didn’t remember anything I’d been accused of.  It didn’t even sound like me.  I thought I must have lost my hold on reality completely.  I moved back in with my parents.  One night I looked at my bottles of pills and contemplated taking all of them then going downstairs and climbing in the bath.  It would be easier.  It would be easier for everyone.  I didn’t want to be crazy.  I didn’t want to be a drain on my family.  I didn’t want them to blame me.  I held the bottles and thought about how I would do it.  It was more and more appealing.

And then I thought about my brother.  I knew he’d be the one who would find me.  And somehow I knew it would destroy him.  I felt more certain about that than I’ve felt about anything ever.  I loved my brother more than anyone in the world.  Even in my unreachable depression where it was hard to love anyone, I loved my brother.  I went downstairs with the pills and gave them to my brother.  I asked him to keep them for me and only let me take them when they were scheduled.  I hate that I burdened him with that, but it was a lighter burden than the other.

The next day I checked in to the hospital.  We soon discovered that the Ambien that was causing the hallucinations.  I stopped taking it and never had an event like that again.

But this was when I started learning that I needed a plan for my depression.  This was when I learned that I couldn’t always trust my own perceptions, that sometimes my brain lies to me.  I learned that when I can’t trust myself, I need to let someone else take over.  I learned that I can’t let things go too far.  I learned that it is ok to go to the hospital and figure things out with the help of the doctors and the staff.

Since then I’ve learned a lot more about controlling my temper (my fuse used to be so short).  I’ve learned that I can walk away from a fight and calm down.  I’ve learned that when I’m angry or hurt, it helps to write things down and get my thoughts in order.  That way, when/if I do speak to the other person involved, I can be calm and coherent.  I’ve learned to have someone I trust who will listen to me vent.  I’ve learned that being angry doesn’t make me bad, it just makes me human.  It is ok to be upset about things.  It’s ok to give voice to my anger.  It’s not ok to hurt people with my words.

I get blue like everyone else, but I haven’t had a major depressive episode in five years.  This is in part due to good fortune, but I’m also certain that it is because I’ve had amazing therapists who’ve taught me to look for signs of impending depression and take steps to keep that depression from taking hold.  I am so fortunate.  I am so blessed.

I know I’ve spoken particularly about epilepsy and depression here, but I hope that these things can be applied to other disabilities and/or illnesses.  We all have to deal with flaws in our construction.  We all have to learn how to manage our bodies and minds so they function as well as they can.  Some of us have greater issues to deal with, but we are strong.  We can do this.