This broken brain is beautiful.

My eyes open and I scramble to find my cell phone. The grey concrete block walls feel like they’re closing in – I can literally hear the crushing in my head. Why is my head hurting so much? There’s a drab cloudy window with no curtain – just a blind inside the window that I can’t touch, a small open closet, an unwelcoming desk and the single, squeaky bed I’m laying in. The sheets make me itch. The smell is like bleach, dust and years of anguish. Am I in a nightmare? No, I can feel the pain. My jaw is so tight, this headache is worse than I’ve ever had and my body feels as though I ran a marathon naked in the Arctic.  I count 14 pieces of medical tape on my hands, feet and both forearms. What the hell? It looks like it’s from an IV. Am I in a hospital?

I finally find my phone and frantically call my husband. He picks up on the third ring.

“Terry! What is happening? Where am I? Why aren’t you here? Is Zach okay?”

I’m so scared. And alone. My head hurts. I’m so tired.

“Shelley…”

“Terry, PLEASE tell me what’s happening. Where are you?”

“Shelley. You’re ok. I’m guessing you’re at the hospital and you’re sick again.”

“Terry, why aren’t you here? Please come get me.”

“Shelley, I’m going to call your family?”

“Terry PLEASE, just come get me. I don’t know what’s happening.”

“Shelley. Slow down. Listen to me. You’re okay. But we aren’t married anymore. And we haven’t been for over two years. I’m married to Dana now. Did you have an ECT treatment?”

Gulp. “I don’t know. Did I?” The concrete walls crash down on me and I lay there. Completely numb. What the fuck? I hang up. Alone.

As the anaesthetic wears off, I call my mom. I’m back in the hospital again and I just had another forced seizure. And two years ripped from my memory.

I’ve had dozens of these treatments. I am utterly terrified of what the future looks like with this brain that I’ve done so much to.

The human brain has the consistency of jello. With 100 billion nerve cells, the complexity of our think tank is mind-boggling in that it holds every single one of our ideas, pleasures, hopes and fears. It’s also the command centre for our central nervous system. So, we REALLY want it to work well and stay healthy.

My brain has been exposed to quite a few offences – some small, some GIANT.

ECT was my go to treatment for Major Depressive Disorder. I had already tried years of medication trials that didn’t work. The most feared side effect ECT is short term memory loss. For me, it appears to have affected both short and long term memory.

ECT, or electroconvulsive therapy, is done under general anaesthetic and “involves passing a small, controlled electric current between two metal discs (electrodes) that are applied on the surface of the scalp and/or temple. The current passes between the electrodes and through part of the brain in. It causes a controlled therapeutic seizure that usually lasts 20 to 90 seconds…”(You can learn more here, from CAMH – where I’ve received most of my treatments.)

This illness has cost me a lot. More than the thousands of hours of missed work. More than the many months I’ve spent in treatment. More than the cost of gas and parking in downtown Toronto. It cost me jobs, relationships and friendships. It’s cost me my dignity and my self respect. It’s cost me my identity.

I remember very, very little of Zach growing up.

ZachAndMom

My fragile brain has been through a lot my whole life it turns out.

When I was little, I used to have the very bizarre habit of bumping my head to fall asleep. My little brother would come in to our room when he couldn’t sleep to count how may times I’d bump my head – until he fell asleep. I’d lay on my stomach and bump it against my pillow thousands of times a night. I often wonder if this habit happened because I didn’t know any other way to make my brain feel better – that having it slam around in my skull felt better than how it felt normally. Could this have done damage?

As much as the future with this brain scares me, I’m even more terrified of what would have happened if I DIDN’T do these treatments. They saved my life. And I’d do it again to be able to watch my boy grow up. I was born with a broken brain and found a way to make it function somewhat normally for a moment in time. It returns to the state it was born in and the cycle starts again. It’s actually become quite cyclical, clinical and predictable for me. Back and forth. Life and death. Life and death. Reset.

I don’t really know the long term effects of ECT. I DO know the long term prognosis of untreated depression – it’s death. So I’ll continue playing Russian roulette with my memories wondering if one day I’ll wake up not knowing who I am. My family will continue to take pictures at special events knowing that any given event might not make in into my memory bank. Precious, precious pictures of important and seemingly unimportant moments. Finding the good fortune in being alive to experience more moments…

Derek and I actually have a long running joke where he asks me if I’ve been somewhere in particular, and I can tell by his expression that I’m supposed to say that I have. And I say ‘YES! I don’t remember but I’m sure I was FUN?!’

This broken brain is beautiful.

Shelley

4 thoughts on “This broken brain is beautiful.

    1. Thank you Anita! There is no need to be sorry at all. Derek and I were talking about the fact that I ‘could’ be very bitter, but I’m choosing not to be. There’s wayyyy to much to be grateful for. Every time I come out the other side of treatment and an episode, I remember that feeling of hope, and that there’s always a reason to keep fighting.

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