Today is a historic day: six years ago today, I received ECT for the last time.
ECT (electroconvulsive therapy) has been a difficult thing to come to terms with. I once blamed it for the loss of everything I held dear: my home, my job, my fiancée, my memories, my ability to read, write, draw, paint, and fix computers, and also for the loss of many of my friends. And it made sense – I can’t remember the events leading up to our decision to getting me ECT, I don’t remember much of the terrible, crippling depression. I can only remember one of my hospitalizations. I can’t remember the desperate phone calls to my ex-fiancée or my parents. ECT has wiped out the two years surrounding it almost completely — all that remains are fragments of memories and surrogate memories.
What I do remember is the miserable time I had after ECT, the purposelessness, the meaningless drifting through the days. Watching the same movie on cable over and over again. Sitting in a chair in the living room on my laptop, a browser window open to Facebook waiting to pounce on anyone who logged in, regardless of how well I knew them, because I was so desperate for any kind of human contact. Being alone without my friends, isolated in the suburbs while my parents tried their best. What I do remember is just trying to survive — make it through the day, make it through the next hour, the next minute. Just trying to make it until my dad came home for lunch; when he’d sometimes find me on the back porch and I’d burst into uncontrollable sobs when he said “hello” and how, after a while, I couldn’t even cry anymore and that’s when it got worse.
I drew a lot of pictures of my experience with ECT. Just quick sketches as I tried to get my skills back. The drawings (one of which you can see below) show someone tortured by the process; they show someone who must have thought they’d made a terrible mistake by agreeing to undergo ECT. I believed this for a long time and it’s only in the past year or so I’ve come to see a different side of ECT – the side of ECT which suggests it was a form of salvation.
My ECT doctor, one of the best in the country, said about 8 out of 10 people die from the kind of depression I was experiencing. That fact alone made ECT a pretty obvious choice for us — it was an existential imperative, an ultimatum: either get ECT, either fight this illness or most likely die. He warned of memory loss, of cognitive impairments but assured us my brain would heal itself within six months or so, that I’d be back to normal. Six years later, I’m still having memory and cognition issues. I can’t do simple math in my head, I have to write simple reminders down in my phone (like taking my pills or to water my plants) or else I don’t do them, I have to keep a journal of how I’m doing on a day-to-day basis or else I don’t have much of anything to talk about with my doctors because I won’t remember the crucial details of what’s been happening with my life between appointments. Whether this is the ECT, the illness, or the medication (and it’s likely all three) is up for debate, but it seems to me a worthwhile, if not still painful trade-off to make to keep my heart beating.
In doing the question-and-answer sessions after my speeches, I’m not infrequently asked if I would do ECT again. It’s a tough question to answer because I’ve had to pay such a heavy price for ECT. But I think I’m closer to a real answer today than I was the last time I was asked the question:
There were certainly tremendous losses and hardships around the time of ECT – but it wasn’t all ECT’s fault. I didn’t lose my home or my job because of ECT, my fiancée didn’t leave me because of ECT. It was the illness.
I have a tattoo on my knuckles which reads So It Goes and it sums up my view on life perfectly. It’s taken from the novel Slaughterhouse Five by Kurt Vonnegut: every time a character dies in the novel, Vonnegut writes “so it goes.” So It Goes reminds me that life just is what it is, you don’t have any control over what happens so you might as well just accept what’s happening to you. It’s my reminder life isn’t fair and there’s no use in complaining about it – I just get up and try again. So It Goes is my own little war cry — that’s just how life is, you might as well accept it and move on because you can’t change the past, you can only affect the present.
And that’s how I try to feel about ECT – with more and more success every day. All I can do is be proactive about it, all I can do is regain those skills, work at improving my memory, and nurture new, more meaningful relationships
But would I get it again?
If I absolutely had to, yes; yes, I would. But ECT is a last resort, it’s what you try after everything else has failed and the situation is desperate. I’m going to do everything in my power to avoid getting ECT again.
I was wheel-chaired out of the hospital six years ago today to start a new life. It was like I’d been reborn, which isn’t nearly as romantic as it sounds. I sometimes joke that I’m really only six years old and, in many ways that’s the truth.
At first my dad had to read to me every night before going to bed because I couldn’t understand books by myself. I had to sleep in my parents’ bathroom because it was the only place I felt safe. I was homebound – I couldn’t even go on walks by myself because I would become psychotic, crippled by paranoia if I even walked the three or so blocks from my parents’ house to the park.
But, gradually I improved and now I live largely on my own near downtown Denver in a studio apartment with my wonderful dog, Kerrin. My dad and I go on walks every day but, most days I can I manage to walk unescorted without becoming psychotic as long as it’s still light out.
I now have a wonderful group of friends who just helped me celebrate my six-year, ECT-free anniversary on Sunday. The celebration was more about them than it was about me – I couldn’t have made it six years without them. It’s not possible for me to live with my illness in isolation, I don’t think anyone can successfully life with a mental illness in isolation. It takes a support system, a community of people to help a person like me live with a mental illness successfully. And to bring them together and feed them my mom’s amazing food was a humbling and inspiring experience — to be surrounded by a roomful of the people who love me the most in life.
Six years ago, I had no purpose – I did nothing with my day. My days were aimless, without reason, purposeless. Now I have a reason to get up in the morning: there’s my novel to edit, there’s my blog to work on, there’s Kerrin to take for a walk and play with. I give speeches to people where I get to offer them hope that mental illness is not the end of a meaningful life but maybe just the beginning. It’s been slow progress at times, sometimes barely noticeable. But I remember Paul’s words in Philippians 4:12: “I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.” I know that God has a plan, that He will always take care of me. Having roots in something larger than myself is comforting. My mom has drilled a phrase into my sister and I since we were little kids: God’s got a plan. And, knowing your purpose, knowing what you’re here to do is a great comfort — it’s a guide to keep you going. Your purpose might change from time to time — but knowing what that purpose is has made all the difference in being content with the fact I’ve gotten ECT.
When I think of how far I’ve come in the six years since my last ECT appointment, what I now see is how much my life has improved. I’m not a traditionally successful person: blessed with a degree, money, a house, etc. But I’m so richly blessed in other ways and I now see ECT as being the starting point of that. It was hard, miserable work — but that work has been worthwhile.
Be sure to check back next Tuesday, May 10th when my mom will be doing a special guest post about motivation and purpose.
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