Electroconvulsive Therapy Traded My Memories for My Life (and I'd Do It Again)
If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.
The underside of my right forearm burns where the intravenous line is burrowed into my skin. Milky white liquid flows through the tubing into my vein as the nurse anesthetist tells me to take deep breaths from the oxygen mask upon my face. I feel the adhesive of the electrodes clinging to the skin on my forehead and chest. The ceiling tiles of the procedure room become fuzzy as my field of vision collapses. I grip the nurse’s hand as the sensation of being at the precipice of a roller coaster turns my stomach upside-down — a dreaded experience for someone prone to motion sickness. Still, the temporary discomfort is worth it for my favorite part: nothingness.
In 2018, following my public admission of being a mom battling suicidal depression, I underwent several rounds of electroconvulsive therapy (ECT). Years of failed interventions for my treatment-resistant depression had left me miserable, hopeless, and desperate for a way out of my dangerous mind. The depression had warped my thinking so drastically that killing myself not only seemed like a legitimate option, but the only way to relieve my family of the burden I felt I had become. It is difficult to explain the thought process of someone who is suicidal, given that each person’s experience of suicidality is as unique as their reasons for sharing that space. But what remains true across the board is depression is a masterful liar, skilled torturer, and distorter of reality to the point taking one’s own life can make perfect sense.
I embarked on ECT secretly hoping I would not come out of it alive. This wish seemed to mock me at the beginning of each treatment when the induction of anesthesia provided a glimpse of what it might feel like to close my eyes for the final time, followed by a harsh awakening when the anesthesia wore off. I craved the sensation of melting into the blackness of my heavy eyelids as unconsciousness overtook me, providing a brief reprieve from the pain of my waking hours. Little did I know my response to the induction of anesthesia would serve as a barometer of the ECT’s effectiveness.
Within a few treatments, my ambivalence for staying alive was replaced by a reawakening of the instinctive human drive to survive. In contrast to my initial excitement for anesthetization, I became apprehensive about losing touch with reality and lacking control over my body. A sense of terror overcame me when I contemplated I might not wake up, leaving my husband a widow and my children without a mother. Most of my depressive symptoms took additional treatments to see an improvement, but ECT renewed my will to live despite my despair — which is perhaps the greatest challenge of all. I had believed my suicide was inevitable, just a matter of when and where, but ECT made it possible to see I still had options.
Despite ECT’s efficacy, it is underutilized because of stigma and inaccurate beliefs about its safety and long-term effects. Like any treatment, ECT is not appropriate for everyone, and there are situations in which ECT is contraindicated. Furthermore, ECT is not a panacea and will not “cure” depression. Without additional treatment, there is a high recidivism rate following cessation of ECT (which is also common with psychotropic medications).
That said, ECT can be a critical intervention that reduces suicidality, severe depressive symptoms, and catatonia long enough to supplement with other treatments that require more time to take effect (medications, therapy, transcranial magnetic stimulation, maintenance ECT ). ECT may be a safe alternative for individuals for whom psychotropic medications are more likely to be contraindicated, such as pregnant women and the elderly. Additionally, the acute phase of ECT can provide time to address problems with an individual’s physical, psychological, social, and spiritual health that might increase their risk for situational depression.
Unfortunately, the view of ECT portrayed to the public ranges from questionable to downright dangerous. Proponents who merely tolerate ECT represent it as a last resort once all other treatment methods have failed. This mentality is problematic considering it can take months to years for an individual to try and fail enough medications and less invasive treatment options to be deemed appropriate for ECT by a psychiatrist and/or insurance company. Meanwhile, the symptoms of depression continue to ravage the individual’s physical, mental, emotional, and social health. This waiting period can also become a safety issue for those who are facing suicidal ideation. Each failed treatment can reinforce the hopelessness of depression, leading to the conclusion suicide is the only way to feel at peace.
In a more drastic stance, critics of ECT claim, “ECT should be immediately suspended” due to cognitive deficits (particularly memory loss) not disclosed before treatment, as well as the perceived lack of sufficient data proving the efficacy of ECT over placebo. While my experience is just one of many, and therefore, not generalizable to everyone who undergoes ECT, my story is valid and meaningful in the stark contrast it presents to the case studies referenced by critics of ECT. Not only was ECT a life-saving treatment for me, but I made an informed decision to undergo ECT, knowing it could negatively impact my cognition and memory.
I wholeheartedly agree healthcare providers are responsible for providing patients with all relevant information, positive and negative, in a comprehensive and culturally appropriate manner before any intervention. Furthermore, patients should be able to exercise their right to self-determination in making treatment choices without any form of coercion or threat of punishment (assuming they are not an immediate risk to the safety of themselves or others, which is outside of the scope of this article). There is an ethical concern if informed consent is not present; however, this does not mean the treatment in question is wrong in and of itself. Instead of focusing on ECT as the problem, we should be examining the presence of informed consent before any intervention throughout our healthcare system.
When it comes to ECT, the most worrisome and debated side effect requiring informed consent is amnesia. Memory loss is a problematic side effect to measure, considering the ways depression can impact memory. Furthermore, many individuals with depression also have a history of trauma. Traumatic events can cause dissociative states that manifest as amnesia, making it challenging to tease apart how much memory loss is due to ECT specifically. Given that disclaimer, my memory loss has thus far been permanent. It is disorientating and distressing to have one’s recollection repossessed; even so, I would choose ECT again. If I had followed through on my suicide plan, I would have not only lost my memories of the past, but I would have also lost my ability to create new memories in the future.
This is not to say it is not difficult when someone is talking to me as if we have known each other for years, and I cannot recall one thing about how our lives intersect. It is awkward when someone says, “remember when…” and I have to apologize and say I have no recollection or otherwise nod and smile while pretending to know what they are referencing. I have lost all memories of the births of my two oldest children and remember next to nothing of their infant and toddler years. It can be embarrassing to need my husband to tell me about experiences I had during the five years that I cannot remember. Thankfully, he is eternally patient and a great storyteller who loves to hear himself talk, so it works out. In all seriousness, though, the potential for memory loss may not be worth the risk for everyone considering ECT, but it was a gamble worth taking for me.
Eradicating the option of ECT would be harmful to those who stand to benefit from it the most. Those who are on the brink of killing themselves, facing treatment-resistant depression, or cannot take mental health medications should be given the option of ECT with all of its risks and limitations fully stated. Instead of putting our energy into banning ECT, we need to focus on the importance of informed consent. And if we want to eradicate something, let us dissolve the systemic oppression that limits access to affordable and competent mental health care for all individuals and the mental health stigma that holds individuals back from seeking care even when allowed access.
I was lucky my unearned privilege allowed me to access ECT in the first place. I had quality and affordable health insurance, a competent and compassionate health care team, short-term disability insurance and a spouse with stable employment, proximity to a major medical school and associated hospital with an ECT program, trustworthy childcare, reliable transportation, a stable and safe home to recover between treatments, and a support system of individuals willing and able to take time off work to chauffeur me to and from treatments.
In addition, my professional experience in the health care field gave me an understanding of my insurance’s prior authorization process and the knowledge to invoke my rights under the Family and Medical Leave Act (FMLA) at my place of employment. Unfortunately, the processes for prior authorizations, short-term disability, FMLA, Americans With Disabilities Act, etc. can be complicated under the best of circumstances and near impossible when someone is barely getting by in life – whether due to circumstances, illness, or disability.
Information for these policies and procedures is not provided to the general public in a way that accounts for the average healthcare literacy levels, much less language proficiency and cultural differences. This lack of accessibility means our marginalized communities (such as POC, immigrants, individuals with low socioeconomic status, those lacking in education, people with disabilities, under/uninsured, etc.) are further disadvantaged by the inaccessibility of these protections and benefits during their time of greatest need. I did not earn any of these privileges, yet I got to reap their rewards. Our efforts to dismantle something will be much better spent on destroying the vast barriers to mental healthcare steeped in institutional oppression that cause many people to continue suffering unnecessarily than on demonizing a treatment that has the potential to save lives.
So, why bring this up now, years after completing my treatments? First, I realized I have allowed internalized mental health stigma to silence my experience with ECT because this disclosure could cause others to question my competency professionally and personally. Our culture tells us we are weak, broken, and useless when we can no longer be self-reliant, productive, or function at the cadence society demands. The trouble with this unrealistic expectation is we are only able-bodied and of sound mind for a portion of our lives. At some point, we are each met with an illness, injury, or disability that necessitates relying on others. Needing help does not make anyone less worthy of love, belonging, or care, but instead highlights our resilience and shared humanity.
Finally, mental health issues are on the rise as we continue to cope with the COVID-19 pandemic, systemic racism violently inflicted on POC, and the ever-increasing daily stressors of modern society. I want others to know ECT might be an effective treatment option for them, even if all other interventions have failed. And if ECT is not the answer, I hope the promise of more fast-acting therapies on the horizon (such as ketamine for depression and brexanolone for postpartum depression) will encourage them to hold on a little bit longer.
Sometimes I am still afraid I will wake up one day and be right back in the depths of despair. Given the chronic nature of treatment-resistant depression, my foreboding anxiety about reoccurrence will likely become my reality at some point. When that happens, I hope ECT has not been eradicated, leaving me without the lifeline that has allowed me to be here today.
Unpslash image by Brooke Cagle