For three years, I’ve been thinking a lot about the ‘quality of life’ debate. After I became more disabled from medical misadventure due to botched neck surgery, my worst nightmare came true – I was left even more disabled. Taking more function from a quadriplegic is one of the most frightening scenarios, and I started living my new nightmare.
Yet my nightmare turned into something unexpected. An opportunity. I realized after losing my arm function, my twenty year career as a designer was over, yet quickly, I started thinking about new opportunities. Despite my income dropping drastically, I decided to start my PhD in an area I was interested in. In addition, not working 50 hours a week, meant I had time to work on my self esteem issues, sleep, eat well and address my suicidal tendencies that had arisen from stress.
In the past three years since the surgery, I have found myself in a place I never thought was possible. I am more happy, more at peace than I have ever been. It wasn’t until I read my PhD supervisors book about rehabilitation and discovering her research into Duchenne muscular dystrophy, that I realized the 'quality of life' debate is more complicated and more complex than all of us fully understand.
How can a young man, on a ventilator with little movement suggest that he had any quality of life? Yet here I was, a high quadriplegic with minimum arm movement myself, and I was happy. There seemed to be a disconnect, those with serious impairments like myself have a good quality of life, yet research suggests over 80% of health professionals wouldn’t want to live after sustaining my injury.
Reading about the statistics is one thing, being confronted with them, was new and something I have recently had to experience after my father had a catastrophic stroke. For the past month, his life has been on a knives edge. We have been told a few times he would die, and although he has been taken off life support, he has managed to pull through every time, surprising both medical professionals and family.
After the stroke, he was barely able to communicate and it was unknown what damage had been done to his brain and body. The family gathered in one of the hospital rooms with dad and all his medical team and we discussed options. One thing quickly stood out – the quality of life issue was at the front of everyone’s mind. Would dad want to live if he was impaired? The consensus was ‘no’ from most of my family and the medical professionals.
I was battling my own demons that day, personal and traumatic issues from a member of my family had surfaced and I was sick. I could barely talk with laryngitis and strep throat. However, I couldn’t let the issue slide knowing what I knew. I talked about my quality of life, how I would never have thought with my injury I’d want to live, yet I have adapted, and my life is good. I questioned why they felt so strongly about dads wish to die should he be impaired and suggested instead perhaps this was based around fear, fear of the unknown. Certainly, I appreciate it’s a human’s worst nightmare, losing one’s dignity, losing independence and losing function. Yet talk to people who have been through it, who live with those issues on a daily basis and if supported, you’ll find most would say they would prefer to be alive than dead.
Since his stroke, Dad has consented by nodding his head regarding whether or not to undergo medical procedures. Even after being taken off life support, he has fought for his life and lived. He may have said he’d never want to live with a disability, yet he’s been fighting now for a month and he’s alive, in spite of the odds which have all been against him. I think that says more about his will to live than anything. I’m not suggesting it will be an easy road to recovery for him, and there will be dark days, but life is something you don’t fully appreciate until it’s nearly taken from you. That’s something I do know about.
So as I watch my father fight, and hear rhetoric about ‘would he want to live… should he be resuscitated.’ I want to say, let him decide, let his body decide. I know that may sound a little fruity, but our bodies are more intuitive than we give them credit for.
I’m my father’s daughter. We may not look the same but we share very similar minds. I know, like me, he is inventive, adaptable and stubborn. These are skills that have got me through my darkest moments as they will him, if he is given the chance to live. So let him live. Stop assuming that having an impairment automatically makes my life less pleasurable than some who is able bodied. For once, listen to those who do know, who do understand, don’t feed into that fear as natural as it may be. Listen to me, listen to others like me.
Life is precious, we get one chance, and surviving a broken neck, or a stroke, is not the worst thing that can happen, in fact, it can be the best thing to happen to someone. I know I wouldn’t be who I am without my injury and the skills I have as a result. Being adaptable is a uniquely human quality, and we do it well if given the chance, and if supported.
I don’t assume to know things I don’t understand, so please, don’t assume people would rather die than be impaired. It’s insulting to me, and to others like me… and it’s taking away the hope and possible life from someone… someone like my dad.