Mental disorders and MAID: Ashta-deb’s story
Personal Stories | January 6, 2023 | Ashta-deb
Ashta-deb sits on Dying With Dignity Canada’s (DWDC) MAID for mental disorders advisory council. She lives with complex post-traumatic stress disorder (CPTSD), borderline bipolar and treatment resistant depression. Ashta-deb supports MAID for those whose sole underlying condition is a mental disorder. She shares her story to bring context to the suffering that can accompany mental illness in this blog post and in her memoir, Life Happens To Us: A True Story.
Warning: This blog post mentions suicide.
I volunteered for the DWDC advisory council so I could learn what the process might look like. At first, it was personal. After being on the council, it touched me deeply the amount of people looking for the compassion and salvation of death. I was not as isolated as I thought. I am comforted to know that soon, I can die legally (if eligible) with at least one friend by my side. The thought of leaving without a single loving farewell is painful in contrast to having someone with me.
In my opinion, life is not about quantity; it is about quality. Death is a phenomenon of the cosmos. Humans have a hard time accepting processes they don’t understand and are out of their control. I feel (and learned) people project their unresolved personal feelings onto others. I ask you: Are your personal beliefs biasing your perspective on MAID for mental disorders?
I have a very clear understanding of my conditions and why I have them. After years of treatments, suffering and confusion, I began to self-educate and self-analyze.
I used to suppress my pain pretending that my life was good. I even bragged about how well I was doing. I cried alone, begging for sleep to come. And this discomfort still happens after 50 years. Waking up for work is a daily challenge. To this day unemployment plagues me. My past relentlessly haunts me.
I manage my mental health condition with acceptance. I cease to try to change the law of nature as it relates to suffering. As suffering arises, I deal with it in the moment. I go to the source of pain and ask, “What is the understanding of this?” I sob as memories return. My spirituality tells me I must process my pain. I must see its source. There are millions of layers that make up a human personality.
I use marijuana. It keeps me calm in public. My wisdom regarding mental health awareness brings conflict during conversations. Marijuana keeps me in a mood acceptable to society. I use tramadol to control physical pain. It has been the one drug that doesn’t cause me side effects and it lifts my mood. Unfortunately, when I don’t take it, I get a crashing low and unbearable pain. I take it sporadically. Most recently I added Trazondone to my regime. It is supposed to help me sleep. Thus far I see no change in my sleep pattern.
My family emigrated to Canada from Guyana. Our image of Canada was equated to paradise. Marketing sold us a country where prosperity was for everyone. None were excluded. Arrival in Canada quickly turned to bitter disappointment. It was not the “promised land” we were told it would be. We faced brutal racism as a family. We were bullied in schools, grocery stores and simply for walking on the streets.
At age eight, many fights between mom and dad escalated to a toxic level. The family was torn apart. The fighting and conflict resulted in my sister’s death by suicide at age 13. I don’t know what is more painful: her death, or the long excruciating days watching her die. Her suicide was not a quick one. She perished for a couple of weeks. I perished for a lifetime. The memory of those events is forever etched in my mind.
Recurring trauma plagues me. My childhood trauma became my adulthood suffering. Attracting more of the same.
Initially, I trusted the Ontario medical system. Afterall, Canada was the promised land, and I had faith in the government. Back in the day, CPTSD was not recognized, nor was the internet available to self-educate. I listened to doctors and followed instructions. There was little or no support groups; an antidepressant prescription, electric shock treatment and a psychiatrist were my options. Friends and family couldn’t understand my agony, and I couldn’t understand my agony.
I spent my whole life living in a non-existent past and looking towards a non-existent future. Nothing was present to the moment. Back then, it would have been nice to see the world; today I am simply exhausted of it. It’s the same story repeating itself over and over.
Physical suffering can be seen; cancer, a wheelchair, physical abuse, amputation, paralysis, etc. We can see where a bandage is needed, attach a joint, or suture a wound. Mental suffering is unseen. Mental illness is vibrational. It is intangible. A mental wheelchair is unseen. Mental wounds are unseen. You cannot suture a vibrational wound, nor can you attach it to another body part when a person feels broken.
Physical suffering claims much support and empathy. Mental suffering claims judgments and condemnations. Most often, the person is viewed as having bad behaviour. Evidence of continued mental health discrimination is seen in the current delays with MAID, as it pertains to mental illness. Why is my mental suffering not equal to that of a patient with physical suffering?
It is very difficult for a mentally challenged person to have discussions with someone who deems themself as mentally proficient.
Mental health challenges are akin to unpredictable and uncontrollable weather conditions. Can you control a hurricane or a snowstorm? No one knows what the vibration will do. It simply bubbles up, much like thoughts bubble up. Though a breakdown is said to reset the body, the lead up, the breakdown and the recovery is horrendous. It can linger for days and months.
The leadup: I can feel the muscles tense and stressed. My heart races and pumps furiously in my throat. I feel something bad is going to happen. I realize I am heading for a breakdown. The internal chatter continues. Sometimes slow and calm, as if my friend, or fast and furious, reminding me of all the reasons I should hate myself.
The breakdown: Self-hate is the tipping point. It feels like a layer of tar stuck to me. I spend hours going over past experiences. I beat myself up both literally and figuratively for being a bad girl. Sweat pours from every orifice of my body, tears stream uncontrollably down my face. My screams vibrate throughout my body, “Why am I so bad?!” My body shakes uncontrollably. I am afraid someone will hear me, catch me having a breakdown. I try to keep the noise low, but I can’t. I am ashamed. The vibrational trigger is electrifying.
The storm swirls as internal narratives I have been subconsciously nurturing, support and deny my experiences. My personality is firmly divided. It tears me apart.
The Recovery: I can feel the fibromyalgia pain intensifying. My body feels weakened from the storm. My appetite takes days to return. Sleep comes, sound and deliberate, bringing comfort. The comfort is short-lived as anxiety takes its toll, “I have been sleeping too long.” I avoid phone calls and messages. I don’t want anyone to know what happened. I realize, it’s not always me, but still blame me. The darkness moves into tomorrow and the day after. As if by some miracle, the trigger stops until another experience turns the switch on again.
Access to MAID means dying with dignity and respect. It means I can die peacefully with heartfelt joy. There will be no mistakes, therefore no shame. Failed suicide is very shameful to live with. My sister perished for days after she drank poison. It was very traumatic.
MAID for mental disorders will be handled on a case-by-case basis. The fear of someone being given access to MAID even when they don’t want it, or change their mind, is unfounded. Fears of mass MAID killings are dramatic and bordering on conspiracy. Talks like this have no place in serious mental health discussions. Extremist thinking is not for medical decisions. Amicable decisions between patient and clinician have been made for centuries. Assisted dying is not new age, some cultures highly respect death, as do I.
I am pleased to be able to contribute to the advisory council. I want to achieve a respectful, efficient and fair process for every person involved with MAID, not only for the patient, but also the assessors and providers. We cannot delay any longer. Mental discrimination must be stopped; acceptance of this devastating disease deserves immediate compassion and resolution.
Note from Dying With Dignity Canada (DWDC)
DWDC is sharing the perspectives of those with lived experience who are considering applying for an assisted death when the sunset clause ends.
When the sunset clause on MAID for mental disorders concludes, individuals whose sole underlying medical condition is a mental disorder will be eligible to apply for medical assistance in dying. This does not, however, mean that anyone with a mental disorder who applies for MAID will be found eligible. Clinicians will be looking for evidence of the longstanding nature of the illness, a history of interventions and treatment attempts, and the voluntary, repeated nature of the request by the person in question (being 18 years of age or older).