How I Found the Will to Live Again After Becoming Disabled

I vaguely remember trying to end my life when I was in the hospital. It was night. There was no window, and I could not turn my head to see the clock on the wall beside me. Even if I could see it, I wouldn’t have been able to read it. I knew it was night because it was quieter than usual. There was still the beeping of machines, and the occasional nurse’s voice that wafted through the open door of my darkened room. But the electric hum of doctors, nurses, technicians, and visitors going about their business had disappeared.

I was having difficulty breathing. The mucous from my latest lung infection was partially blocking the trach tube. The sheet under my back was soaked, and a wrinkle was creating a maddening itch on my right hip. My body was on fire, and even the cool breeze of the oscillating fan that brushed the tiny hairs on my sweat-sheened skin felt like an army of ants marching to and fro. My feet felt encased in hot iron thorns, and I ached in half a dozen places, but was unable to shift or roll over. Contractured shoulders prevented me from reaching for the nurses’ bell that had fallen off my chest. I couldn’t move, I couldn’t ring for help, I was lonely and frightened and terribly depressed.

It had been this way for months since I emerged from a 6-week medically induced coma. As my brainstem and nervous systems struggled to repair themselves, my body lay immobile, being monitored, measured, and observed through countless wires attached to noisy machines. It was oxygenated, fed, hydrated, and cleansed through various tubes attached to bags of all sizes. My body lay dormant and weak, but my mind was alive and active, and I couldn’t stand it anymore! I wanted to die. I wanted to drift away from this ugly void where every waking moment meant being trapped in a fleshy cage permeated with discomfort, pain, fear, isolation, depression, and utter hopelessness. I started to disconnect my hospital equipment. I didn’t really plan it or work up to it. I just did it. I was already medicated and so sleepy. Perhaps I would simply stop breathing and drift away.

When I woke up, I was admonished by a nurse, demanding to know “what were you thinking?” What was I thinking? I was thinking about how much I hurt. I was thinking I might be losing my mind. I was thinking my life was over anyway. I was thinking I had no future. I was thinking I would rather be dead. But I couldn’t articulate any of this, so I burst into tears. After the third time I disconnected my equipment, my family was asked for the second time (the first was while I was in the coma) to sign a DNR order because I “obviously didn’t want to live.” They declined, hoping that my mental health would heal along with my physical health. By then, however, seeing how much pain I was causing them, I had given up trying to end my life, and fell into a deeper depression, believing I would never recover enough to leave full-time care.

Although not fully, my physical health did begin to recover. My mental health, however, did not. Not at first. After 18 months, I left the hospital with depression, anxiety, PTSD, and an abject fear of the future. I never ever wanted to go through that again, and even the remotest possibility terrified me. I wrote an Advanced Directive stating my future wishes (no tracheostomy, no CPR) and had it notarized, and signed a DNR order of my own volition. Every year for three years, I signed a new DNR order and registered it. It brought me peace of mind to know I would never suffer like that again. Meanwhile, as I struggled to adapt to my impairments and navigate the world in my “new body,” the depression and PTSD held me in a vice grip. I railed against the unfairness of it all, and daydreamed scenarios where I would be killed quickly without having to do it myself. Pain and spasticity wracked my body, and I begged a God I didn’t believe in to end my life.

And then something happened. It began to change… I began to change. As I progressed through rehab, group homes, and on to independent living, I was given resources, equipment, and supports to assist my transition to regaining independence. My power wheelchair gave me a freedom I thought I’d never attain, and I began to spend much more time out in the community. A team of medical professionals from various specialties monitored and supported my progress. Surgeons helped me regain the use of limbs I thought were lost forever. Social workers and counselors helped me enter the programs and attain the resources I required to live as independently as possible. I was even able to see a psychologist for a while, free of charge, which kick-started my journey to personal growth.

When I moved into my Family Care Home (my own suite inside my caregiver’s home, where she lives with her husband and two sons), I fought against yet another change, and struggled to adapt to a new environment and caregiver. In time, however, I began to realize how valuable the situation was for me. Because there was someone available 24/7, I was free to conduct my life as I wished. My independence blossomed, and my confidence grew along with it.

Unable to work, I spent much of my time pursuing new interests and revisiting old hobbies. The trauma I had suffered, coupled with the discrimination I was experiencing because of my disability status fueled my creativity and desire for justice and equity. I began to write again, and my stories were published. I did some public speaking about my experiences and growth. I created a website and Facebook page dedicated to disability advocacy. My mental health began to improve, and I slowly began to realize that I was… genuinely happy. So when the expiry date for my DNR order came around, I let it pass. I was acutely aware that this meant the possibility of further future suffering, but my perceptions and attitudes had completely changed. I had not only survived, but I was thriving, and I had much to live for.

It has been many years since that day, and I have continued to learn, grow, and flourish. I still live in the Family Care Home, and I enjoy autonomy and independence in most areas of my life. I have reconnected with the daughter I gave up for adoption when I was a teenager, and met my two granddaughters. My marriage is stronger than it was before my illness, and the rest of my relationships are mutually loving and respectful. I generally feel safe, secure, and fulfilled, and I haven’t had a major depressive episode or PTSD trigger in two years. I no longer wish for death. I have things to look forward to, relationships to build, and goals to fulfill. I want to live.

I’m not saying this transformation from wanting to die to wanting to live was easy or magical. It was a long (and often painful) process of physical, mental, and emotional recovery and growth. And I’m not saying that my life is now all pink clouds and unicorn farts. Chronic pain, mental illness, accessibility issues, and rampant ableism are still a part of my daily life. What I’m trying to say is that it was nearly impossible to have hope for the future when my present was so uncertain, isolating, and filled with pain and fear. I didn’t know anyone who had gone through something similar, so I felt like no one could possibly understand what I was experiencing. I had experienced a trauma that completely changed my life, and set me on a trajectory I had not planned. It took time. Time to heal, to recover, to learn, to adapt, to grow, and to accept. Now that I’m through the long, dark tunnel, I’m grateful I had that time. When I think about how many times my cosmic batteries almost ran out, and all I would have missed in life had that happened, I realize just how lucky I am and how much life there is left to live.

If you are in that long, dark tunnel right now, and desperate for the pain to end, I want you to know that I get it. You are not alone. It’s going to take time. And I know that the thought of spending more time in the state you’re in feels like an indeterminate prison sentence, but it can get better. Give yourself that time, and you may find, like me, that you can live a happy and fulfilled life after trauma. And please remember, the world is a much brighter place with you in it.