On good days, I rarely think about what got me to where I am today. Like most people, I take it for granted that I am living and functioning, partaking in daily activities with the ability to work productively. I attempt to remain mindful of the pain when it is absent though, in order to appreciate the good times, which usually come in waves of minutes or hours, rather than days or years. But living with a disease, a mental illness, I usually feel that if only “normal” people felt the pain and fear and despair that I feel regularly, they wouldn’t take their lives for granted at all. And as much as I want to be normal, I feel lucky I have an authentic perspective on quality of life.
While I take pride in my journey, and enjoy sharing it with others, that excitement is often quickly deflated. Right when I begin talking about what I’ve been through with others, I also quickly begin to recognize the dismay on their faces and the uncomfortable position of their bodies as the true nature of the situation sinks in like a dead weight in water. Just when I think I am fighting the stigma of mental health by sharing my story, I realize I’ve just completely admitted to somebody, a stranger, acquaintance or even friend sometimes, that I am in fact legally insane.
I usually start to lose people around the time when I begin to talk about having gone through electroconvulsive therapy (ECT). It’s like that term triggers a switch for them to stop listening, and to completely discredit me as a human being. And I know that all they can see in their head are the images portrayed in movies of crazy people strapped to beds screaming and convulsing and coming out as zombies on the flip side. No matter what comes out of my mouth after that, the engrained stigma has been ignited.
So sure, it’s okay now that people are open now about being depressed, or bipolar or having any mental illness. As long as we don’t discuss the details that could make other people uncomfortable. Most companies are required to provide the necessary legal measures for people with mental illness. While friends and family hold your hand when you cry and understand you don’t want to see them for months at a time when you’ve locked yourself in your house. But nobody wants to hear the true details of the horrors behind the illness. And everybody with a mental illness has a book chock-full of these details from the depths of depression to the pure insanity of mania and everything in between.
So I thought, why not begin sharing stories with people that do understand, just as I have in the many rooms of recovering addicts and alcoholics. I believe that it takes strength in numbers to maintain and advance the fight against the stigma attached to mental illness. And while not everybody with bipolar disorder experiences ECT, most people with the disease can still relate to some part of it. Like having to stay in a mental hospital, or losing months of work time.
But what truly haunts me the most about having gone through ECT treatments is the horrific aftermath of the treatment that saved my life. Yes, I was barely functional at the time I had nine ECT sessions. And yes, sometime after that, I was notably more functional and have been since. And I went from being on six to seven rotating meds to only being on two medications since then. And the experience ignited me to take care of myself physically and mentally and change my career path to fit in with my health needs.
But it also generated the most absolutely horrifying time in my life that I cannot stop thinking about. I lost my short-term memory completely from ECT. I can remember a few minutes here and there during the first couple of days and from months afterward. Other than that, the time is gone with the medical impossibility of ever recalling any of the memories. I found that losing my memory was the most disturbing thing I had experienced in life, even with the decade or two of other excruciating life experiences.
And while I don’t remember how I felt losing my memory every couple of hours or not being able to watch my two-year old daughter alone because I would forget she was there, it is the feeling of not being able to recall my life for a few months of time. The fact that I had to resign from a job, which I don’t remember doing, that I loved more than any other job in my life because I couldn’t recall how to carry out the functions of the position. Or the unsettling confusion of waking up in an entirely new house in a new city day after day, not understanding that I “chose” to move away from a city that I loved. Side note: don’t make any big life decisions when you have the memory retention of a goldfish.
So here I am today, still struggling from the sometimes unspeakable characteristics of bipolar disorder. And I find myself forcing my appreciation for feeling better now than I did before ECT. But I think that is something relatable from a person with a mental illness to a person without that affliction. That no matter how hard I try to recall how things were worse in the past to put perspective on a currently bad situation or experience, it is hard to reach out of the moment to feel anything but the current, pressing, heavy burden. But when it does pass, hours, days, weeks, months or years later, what matters is I continue to try to be mindful during the good times, and sometimes that is the best I can do.
So very sorry that there isn’t better treatment for this disorder. My beautiful niece suffered from it and ended up taking her own life. Praying that one day they will find a treatment that actually leads to a better quality of life.
Linda, thank you so much for sharing. I am so sorry for your loss. I feel fortunate that I have access to alternate treatments like ECT. And I am advocating for the day when all treatment options are easily accessible to all sufferers.
Did your short term memory came back??
So much love to you! Thank you for sharing your story. <3
You have an amazing voice! Your journey is so familiar to me. Please keep speaking your truth. Together we have so much work to do! Thank you for sharing your story!
Thank you so much Suzanne for your encouragement! It is a comfort to know that my journey is not unique. And that we can each participate in our own way to forge a better path for suffers of mental illness together.
Thank you so very much for sharing your story…..I too, had ECT and understand the feelings ..or lack of…that you have experienced. The memory loss is terrible but, I have been on a good path,with less medications for quite a while now so, I still say the ECT was a success. I am so Thankful for the site and people like you who can put their words down for all to see and understand and not feel guilty any longer…….
Donna I am so glad that you commented on this post. I have not met many people who have gone through the same experience. And I do agree with you that ECT was a success, and all side effects aside, I would do it over again if I were in the same situation. I feel so fortunate to be on less medications now with less extreme mood changes. It was definitely a re-set. Keep sharing your thoughts!
Sean you continue to amaze me every day with your courage and strength. You are an inspiration to me. If the world could all be mindful of the human race being a kalidescope of differences and compassionate with the struggles of being an individual with differences, the world would be a better place. We all have a common goal, to live a happy fulfilling life. Sharing your story unites others who share a similar story. To all of you, don’t give up hope and if you are at your wits end know that I am hoping for you.
I am currently doing another course of 12 Ect treatments at my local hospital. I am thankful that this therapy is made available to those of us that are suffering from major depressive disorders. It’s been 15 years since I started Ect treatments ( I’ve had around 50 treatments done since beginning in 2003)as an in patient. I am currently getting them done 2X per week as an out patient up here outside Vancouver B.C. Canada. The treatments are a game changer
For faster recovery. I plan to have ongoing maintenance treatments done over an extended period of time.
This illness has been difficult for my wife and kids to deal with plus I have lost my ability to work for months at a time. I have been battling depression for 40 + years
I am really hoping for a good response to these current treatments and that I can regain my health for a long period of time.
Peer support is huge for me moving forward
Only those who have traveled the road truly understand the journey.
Keep going .. and never give up!
I’ve recently completed 12 ECT treatments and I’m happy to be say it has been successful.
I have struggled with depression and hypo- mania for almost 40 years.
The 8-10 months prior to ECT I felt like I was dying inside- or felt “past suicide” a lot of the time. Like I was already dead. I dropped out of almost every area of my life.
I resisted ECT for many years solely because of One Flew Over The Kookoo’s Nest.
When I finally felt like I had nothing to loose, I agreed to try it.
I felt no change for the first 3 month and had 0 expectation of improvement
The one Thursday I woke up and felt kind of good. I became motivated and industrious-began connecting to other people and continued to feel better. I feel alive now.
Thank the Lord, my memory loss has been fairly minor and mostly just annoying or amusing.
My biggest hope now is that my improvement continues and that sharing my story will help encourage others to try ECT