A right to live and die

I can honestly say, hand on heart, that through no fault of their own, I have felt like a burden to my family since the age of 6, when I endured a spinal cord injury as the result of a car accident.

I have never been a financial burden on them. Nobody has ever had to give up a job to care for me, family members have never been sole carers to me.

However I would be kidding myself if I pretended that my disability, my ill health and my unpredictable future hasn’t effected all aspects of their lives, at some point. They too, if challenged to be brutally honest, would have to admit they have resented the way in which my life has affected theirs, at some point.

I am dogged, determined, plucky and persistent. My family are loving, noble, honest and passionate people. They love me, of that I have no doubt. But we are all human. We are not infallible. We all feel the stresses and strains, the heartache and pain of life. We all have days when we are rung dry, exhausted of the fight we have consistently relied upon to carry us through the hardest of times.

If you were to read my medical notes you would see that from the age of 13 to the age I am now, 26, I have battled with depression. Several years ago I would have been embarrassed to admit it, but now I feel able to say that suicidal thoughts have plagued me, without fail every year since my 16th birthday. I remember clearly writing, a suicide note addressed to my then, school form tutor, deliberately to avoid my family having to undergo any more suffering in the event I felt unable to carry on. I had been paralysed from the chest down for 10 years.

As I have got older my impairments have unfortunately become more severe, with that my physical independence has waned. Managing a failing, tired body so incongruent with my mind, full of ideas and aspirations has unfortunately presented a host of new challenges in terms of keeping myself heathy. Mentally, emotionally and physically.

My severe spinal deformity means a daily struggle with chronic pain and terrible fatigue which demands I spend hours, often days in a row, in bed. My pain is unpredictable, at its worse it affects my entire upper body, my shoulders, arms, neck, even my face. Pulled muscles, tendonitis, and cramp. My scoliosis has also left me with a greatly reduced lung capacity, vulnerable to chest infections, pneumonias and sleep apnoea. I have had over 60 operations. My conditions affect my bladder, bowels, breathing and digestion. I frequently obtain pressure sores that are prone to infection. Persistent leg spasms keep me awake and trigger further pain in my already twisted pelvis. Almost every part of my body, unaffected by my paralysis hurts.

Depression and suicidal thoughts will always be part of my life. Whilst I am doing everything to try and manage them as best as I can, I have to accept them as a permanent fixture.

It’s difficult to explain just how painful it is to acknowledge that I’m already on borrowed time, that life, for me, will most likely stop desperately short of what I had hoped for. I will certainly die with unfulfilled dreams and one day I may live such a painful, agonising existence that I will want to die but be unable to kill myself.

Brutal Government legislation has determined that my life as a disabled person with mental health issues, becomes all the more painful, challenging and at times impossible to tolerate. I know many people who would dread to live the life I do. I have also met others who would have given everything to be in the position I am. If I had been asked whether my life was worth living at 16, I would have said absolutely not. If I could have put my life in the hands of doctors even just a year ago, telling them I wanted to die, I would be dead. People talk of safeguards to protect the vulnerable from feeling pressured into a decision to end their life. Was I too vulnerable at 16? How about at 25?

Depression, disability and ill health makes it far too easy for those enduring them to dismiss the value of their lives, yet we are allowing a government who have already made abundantly clear how unworthy they believe disabled people to be, to challenge our worth even more.

Whilst I, and others are battling so hard to survive and fighting so hard to prove they deserve to live, I could never ever support legislation that says it is okay for me to die. It isn’t and it won’t ever be, okay.

4 Responses to “A right to live and die”

  1. Jenny

    What an eloquent, brave and honest post. I am fortunate enough to be unable to really appreciate your situation. Thank you for bringing me a step closer to understanding. All good wishes to you. x

    Reply
  2. M.K. Hajdin

    The moment assisted dying becomes legal, all of us “useless mouths” will be herded straight into the slaughterhouse.

    They call it “death with dignity”, but they won’t allocate the resources for disabled people to have a life with dignity.

    Reply
    • Tyler J. Wagner

      I sincerely hope M.K. Hajdin is wrong, and I understand why he or she fears it. However, there is a way to test that theory. What is happening in those countries – such as Switzerland – which have legalised it? Have they reduced benefits to their disabled people? Or worse?

      Reply
  3. Dennis Queen

    Thank you so much for writing this fantastic article. I know myself how hard it is sharing our personal stories , takes some guts and putting our pride aside, but some of us need to do it to combat the Deather’s poster children with their pity parade. You rock and thanks so much for campaigning together for our right to assistance to live, not die!

    Reply

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