Note: Reference to suicide, suicidal ideation, and self-harm.
Hello there, and welcome to my first blog post! I promise I won’t use pictures of Jack Nicholson from One Flew Over the Cuckoo’s Nest for any other post. (But never say never, right?)
After all these years, I’ve come to see living with a mental illness as a process, not a problem. Ok, it is a problem – a really frustrating, devastating, never-ending, self-destructive problem. But I suppose what I really mean is that the solution is a process. There is no quick fix for mental illness and it cannot be cured. Believe me, I’ve tried. Like many have said before me, it’s like having Type-1 diabetes – you can help make it better, you can learn to live with it, but you will always be a diabetic. It only has taken me about 14 years to accept this, and some days I still just don’t want it to be true.
While I suppose my story of battling mental illness starts at the age of eight, I wanted to use this blog to focus on the many components of the illness: like its impact on family and friends; life-building; medication; therapy; (mis)diagnosis; stigma; and of course, ECT. And knowing me, perhaps a few other (million) things.
So the name of the blog … about five years ago, I had to quit my job on the East Coast that I was quite fond of, leave my friends and other life accoutrements, and move back to the West Coast because of a breakdown that led me trapped in a deteriorating downward spiral. I spent the next year in Berkeley, unable to leave the house; binge-watching Netflix; making and eating pancakes, and hating my life. I was about to turn 30 and realized I couldn’t take it anymore. I decided the week before I turned 30, I would kill myself.
Now the act of killing oneself might be easy (unless you are only attempting suicide as a sign for help,) but doing it while under close surveillance of family and friends who need and love you, is a bitch. Plus, I am currently and was at the time becoming the worst liar in the world. Who knew age not only led to wisdom but truth – maybe we just get too tired to lie? Anyway, I told my psychiatrist that I was having suicidal ideation and given the 10 years of drugs I had tried for my major depressive disorder, she decided now was the time I should try ECT.
Now I know what you’re thinking: ECT? Electroconvulsive Therapy? Electro Shock?! Even I thought of the scene from One Flew Over the Cuckoo’s Nest with the wood stick jammed between his teeth, his body seizing, froth spilling from the sides of his mouth, and it only making him even more fucking crazy. But to be honest, when you want to kill yourself and have a history of self-destructive behavior, why not? I figured, worse case scenario: I died on the table. Convenient. If it hurt? Good. I deserved it anyway.
The plan was to do ECT for six weeks, three times a day. That’s a good starter course. (FYI: I don’t remember much of Berkeley because of the severe depression nor do I remember most of my ECT so my details may be slightly off. Specific “facts” are known by either my doctor or my mom. I do know, however, that those six weeks turned into two years, give or take.)
The worst part of ECT, is that for the first procedure you have to stay in the psychiatric ward – just in case something happens – liability, etc. As someone who at the time had been diagnosed with major depressive disorder, I was in pretty good shape compared to my fellow “inmates.” It was the first time I had ever seen someone who was schizophrenic and off their meds, met a person with borderline personality, or witnessed severe bipolar disorder.
No matter how bad my depression ever got, I’ve always been polite, extroverted around people, and eager to please. Here I was sharing a room with three other people who didn’t give a fuck if they farted or if the nurse wanted them to be quiet. My eyes wide open, I heard someone who was in what I think they call in prison “solitary lockdown” screaming the entire night. Needless to say, that made me more scared than the idea of ECT. But then the next morning, this sweet, tall man came to wheel me to my first session. The front desk people didn’t look at me like I was a beaten puppy. The doctor was kind but upfront and incredibly educated. The nursing staff was so kind, I didn’t have to make excuses or take the energy to hide my sad truths. They asked me some pretty severe questions about my life, but never showed judgment. I already felt like I was building a family of friends who actually understood who I was. And once I was wheeled into the “operating room” they were efficient and light-hearted. (More stories on that later.)
As for the process, after they wheel you into the room, they give you fentanyl which relaxes your body and makes you feel … at peace. At the time, I didn’t know that people actually “used” fentanyl. But I certainly get why now. So we get in there, and they were all chuckling. Actually, they chuckled every time I had a session, because in my nervous honesty when they asked me about allergies, I had mentioned eggplant. I get nervous around authority figures and my luck, one of the anesthetics reacts to female eggplant. I don’t know?! I was nervous! Anyway, after that, every time I had a session, they included it among the list of allergies on the white board. And every time I had a session, they thought it was hilarious as if the first time. Well, no one can say I don’t entertain but I assure you I can do better than that.
Then I took a deep breath and the nurse who was there took my hand. I told her to make sure no one started until I was fully asleep and she promised me she wouldn’t let that happen. The warmth of her hand and the smile on her face assured me I was in good hands. I was supposed to count to ten but I don’t think I ever got past eight. (I was thinking about how in movies they always make it to like…four – which is bullshit. But then I realized, if you give someone until four, you can scan the room, the lines on the scary machine, zoom in on the anesthesiologist, the nurse wiping the doctor’s brow. It also gives you time for some dramatic music. So okay, I’ll let it slide this time.) I felt like I blinked and I was in post-op. According to the doctors, the procedure “door to door” is a total of 15 minutes. You spend more time in pre-surgery and post-op than in the actual procedure itself.
You can learn more about the details of the process and why it can be a good option at the Mayo Clinic website. Before I did the procedure, I also read “Shock” by Kitty Dukakis. What most people don’t know is that ECT is really helpful for people with bipolar I and schizophrenia, as well as major depression. Much later on, as in two years through the process, I would learn I had been misdiagnosed and did not have major depressive disorder but bipolar II. Turns out, those of us lucky to have a form of bipolar that no one knows about, while ECT is effective the first time, it’s ineffective if ever tried again. Bully for me! It sucked because at the time I thought ECT was the G-d I never had, but I found some peace in understanding why none of the meds I was taking were working. The hypomania also explained a lot of my past behavior. And most importantly, it meant I could use different medication to actually reach the right parts of my brain that were fucked up.
While I am now back to struggling with medications and the like, I have to say – I miss the “allure” of ECT. Sure, I had aches and pains afterward. But I felt my mind changing: it was like I could feel myself gaining control over my demons. I hope to share more about my experience with ECT as it varies from person to person, and more importantly because people rarely talk about it at all. Long story short, this is why I chose the name Ecteedoff for my blog.
As I wrote before, I hope to use this blog to explore the complexity of mental illness – from the minutia to larger systemic issues. And I hope you’ll join me, both on my journey and in exploring your own.