Thursday, 29 July 2021

"... And I came flying"


In the 1990s I was fortunate enough to be enrolled on a six month course specialising in the care of the Spinally Injured patient. This was based at the Southport Spinal Injury Unit , which then had unique experience in caring for patients who had total paralysis of their bodies, including their muscles which initiated breathing. 
Many of these patients would be ventilator dependent for life.
I got very close to one man who I will call Jim.
He was in his thirties and had broken his neck in a car accident . The injury was so severe that he would need ventilatory support over night but could come off the vent during the day after which he could breath for himself albeit only for a few hours. He could feel his face and talk in a whisper but had no physical control over his limbs, body and head.
My shifts were always weekday mornings with afternoons off for study, and so every morning I would take Jim off the confines of the ventilator, wash, dress and feed him and prepare him for physiotherapy 
And every morning he would cry silent tears when woken with suction or the changing of his tracheostomy inner tubes.
One day I asked him about his morning bursts of emotion 
And I remember so well the conversation as we were alone in the hospital gardens, Amid the raised planters, which were specially designed to be viewed from a wheelchair.
They were full of lavender and rosemary as I remember

Every night I dream Im flying” he whispered “ And every morning I wake to this” 

And for the first time I properly realised the impact of injuries like his.
I couldn’t speak. 
What could I say? 
I just nodded and rested my hand on the side of his face, where he could feel the contact.
I was going to hold his cold unfeeling hand, but the gesture would have been lost, 

Jim killed himself a year or so later. One of the physiotherapists wrote to me to inform me.
He had simply stopped eating and had refused escalation of care when finally admitted to a general hospital with pressure sores and renal failure. 
There was no Dignitas back then and there was no where to go for a quadriplegic who couldn’t move his own hands to explore the usual methods of ending ones life.
He had to die painfully and without dignity 
Which is a place no one should go.

The above clip is from a film I watched last week called The Sea Inside  ( Mar Adrendro) 
It is about the struggle of a Spanish sailor Ramon Sanpedro, who fought for nearly 30 years to be allowed to die after his spinal injury accident.
It’s a hard watch 
This scene brought my conversations with Jim flooding back 
Of his tears in the mornings 
And his dream flying at night 

80 comments:

  1. We are fragile, yet robust, one bad moment can change so much. When I started reading this I wondered, if he had a choice, would he want that life, as I read through he told us the answer.

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  2. I walk past the entrance to the Spinal Unit most days JG. In one of your posts you wrote that hopefully one day there will be a Dignitas Clinic on every street corner (something like that) and I hope so too, my lovely Mum had the support of the hospice, and whilst I will always be eternally grateful for the care she received, she often told me she had had enough she had accepted that it was not the cancer that would kill her, but it was her time to go. I mentioned to you once that I did voluntary work at the Deva, I think I was on Saughall ward, one the the patients told me she had a son, I asked did he visit she said NO, he lives far away, so I asked where, she replied Birkenhead. I was 15 and made a promise to myself then, that if my parents were ever in a hospital I would visit them everyday, a promise I kept. All the best JG XXX

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    1. Dignitas is only useful if the person wanting its care has capacity
      Capacity is the answer…..
      And who seems capacity ?

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    2. Anonymous8:14 pm

      "seems"?, oh.. do you mean deems? Figuring a way through all the un-proofed typos is a problem here you know. It's like a cryptic crossword at times.

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    3. Sometimes I wish I had more time to check autocorrect
      I have been working overtime today

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  3. Anonymous12:13 pm

    A sad story. What is also sad and appalling is that when he was admitted to hospital he had pressure sores.

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    1. The pressure sores were unavoidable
      His control precluded him being turned at home, he refused to have his pressure cushion checked and his emancipated condition accelerated the sores from occurring. Sometimes the best “ care” cannot be given when the patient is of sound mind but refusing

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    2. Anonymous8:11 pm

      "emancipated"? ... emaciated? (hardly emancipated surely?)

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    3. Emaciated , dam auto correct

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    4. Anonymous9:14 pm

      auto-correct can be turned off, although that might be worse? :)

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    5. My spelling is dreadful I am first to admit it, I suspect I’ve a bit of dyslexia …I often cannot “ see” words in my mind

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    6. Anonymous9:46 pm

      Funnily enough I have much professional experience of many people with dyslexia and I see no evidence of it in yourself, for what it's worth, all I see is the need for a quick, or perhaps slow, proof check before submitting.

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    7. I bow to your experience xx
      But I’m lazy, and I’m busy
      And I don’t always check my replies
      To be honest I’m not that bothered

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    8. A few spelling errors are normal for Going Gently

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    9. anonymous, I would sure like to know how you turn off auto correct.

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  4. John what a dreadful, dreadful story. I am a member of My Death My Decision and have a fund put away to fund Dignitas should I need it. I so firmly believe that we should be allowed to choose and to maintain our dignity. Brought a lot of tears to me this morning.

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    1. Sorry pat…don’t watch the movie x

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  5. One needs capacity for Dignitas and friends to help you. My friend went to Dignitas a few years ago. She couldn't have done it alone.

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    1. And the assessment of capacity is fraught with ambiguities ….

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  6. What a sad story. I worked at the Prom Hospital in the 70's, on the orthopaedic wards and did a few stints on the spinal unit. Mostly young men, whose lives had been changed in an instant. Assisted dying will come - one day, I hope. I remember my Mum asking me to help her die, she'd had enough. What could I say. xx

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    1. I’m ambivalent about assisted dying

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  7. A terrible situation for the patient, carers and relations. By trying to ensure no harm is done, society creates another dreadful harm. This breaks my heart.

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    1. Southport did some clinical research into quality of life issues with high quadriplegics on ventilators . It found most would want to be resuscitated in case of arrest….
      The sample numbers were low
      I also questioned the methodology

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  8. Thank you for this post as it helps me to reaffirm how lucky I am. We take so many things for granted, even simply breathing.

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    Replies
    1. Of course we take things for granted
      We all do

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  9. I have always believed in quality of life not quantity.
    Capacity as well of course.
    I hope I would be brave enough to do the right thing.

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    1. Sometimes life at any cost IS important

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  10. Thanks for sharing this, John. xx

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  11. My friend Ali went to Dignitas last September, she had to go while she was physically able to get there, and before lockdown kicked in again. Fortunately, she was already registered with Dignitas, it's not something you can just decide to do when you need them. I try to remember Ali when things go wrong and I feel like moaning...

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    1. I’m so sorry….ithink assisted dying is hardest of friends who often stand in the wings

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    2. It was a privilege to know her. She always made me laugh, right up until the last time I saw her (2 days before they went to Switzerland). She even made that easier, by not saying it was the last time, but left me a letter...

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  12. I'm reminded of the movie - The Diving Bell and the Butterfly. May we all have life and death with dignity.

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    1. Another important book everyone should read

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  13. How desperately sad. We are so cruel not to allow medically-assisted suicide to those who want it. Things are changing now finally, though.

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    Replies
    1. Things are. Changing but they are slow

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  14. Barbara Anne3:37 pm

    What a heart-wrenching story, John, and how eloquent were Jim's words.

    When FIL was dying, I learned that in the end stage of life, pressure sores are inevitable as the skin breaks down, too.

    Hugs!

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  15. Anonymous3:59 pm

    Years ago, my husband was in his late 30s and terminally ill. He was cared for at a large VA Hospital, but once terminal, his care reverted to the local VA. His last visit at the former VA included a long talk with his doctor, witch included his determination to end his life at the point he couldn't care for himself. The doctor kindly prescribed medication for sleep, but warned him of the danger of overdosing. To this day, I see this as a gift that enabled my husband to deal with his decline. Turned out that he died a natural death.

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  16. Anonymous4:04 pm

    I used to be a social worker.capacity is certainly the issue
    Keith

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    1. Nice to hear from you again

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    2. Anonymous10:29 pm

      I’ve emailed you,
      Keith x

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  17. I remember when my sister-in-law's sister was dying of cancer my nephew asked me why when an animal is in pain it can be put to sleep peacefully yet his aunt had to due slowly and in pain or fully drugged up! Broke my heart. x

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    1. The difference is that animals don’t know they are dying

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  18. Injuries like this, and other conditions which take away almost everything physical, but leave full awareness, I think are amongst my worst nightmares. I really don't know how Stephen Hawking was able to keep going for so long.

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    1. Maybe because the most important part of his life was in his mind...that and incredible willpower?

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    2. I have seen literally hundreds of people COPE with spinal injury
      Some , obviously with varying levels of abilities but that’s true of us the “ able body “ members of society

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  19. It also brings full force on how bad we don't have it.
    We only think we do.
    Thank you for your sensitivity to a being who was in so much pain. Mind pain.

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    1. You can’t empathise with these patients EVER all you can do is be there

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    2. No not empathy ,but a touch.Sensitivity.

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  20. Wow. What a story. That poor man. I saw "The Sea Inside" many years ago and remember it was very powerful.

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    1. I’ll pick a happier memory next time

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  21. It is when we read stories such as this that we must realize we are truly fortunate.

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  22. I watched a programme on the tv twice where someone chose to travel to Dignitas-I would have helped my mum if she had asked me but in 1991 I had never heard of it-she left in agony pleading for pain relief and me begging the nurses on the ward for help-they said they had called the crash team and we needed to wait but it was a long time coming-it was traumatizing and I was helpless- With my dogs I have cuddled and lay alongside-I have sang to them and spoke to them words they understand-my top dog definitely heard me reminding him of certain things and he got comfort from my voice x

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    1. Strange as it may seem , in my experience people cry more and show more emotions over pets than they do over their next of kin…it’s sort of allowed to be more emotive

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  23. It's strange to read this story today as I watched the film Me Before You yesterday about a quadriplegic and his family wanting to change his decision to go to Switzerland. As I watched I could see reason on both sides, as a mother you'd never want it no matter what but as the patient I could see it was what he wanted and could understand totally. It was a good film. I'm sorry your patients real life experience wasn't what films are made of. Very very sad. x

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    1. Yes, that’s quite a good film and shows the emotional difficulty of being “ fed” by someone else. The actor who played the patient was impressive

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  24. Being in healthcare, you have a better understanding of our eventual deaths. Selfishly, I hope to go in my sleep. I lost a brother and father to a sudden massive heart attack.

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    1. Me too ann , although I have a fantasy about my funeral

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  25. what kind of hell it must be to be a prisoner in your own body.

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    1. Some people cope remarkably well, it’s not all dire

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    2. Anonymous9:02 pm

      We are all prisoners in our own bodies, and just heads actually, all of the time, however mobile, and for some, rather many actually, that is sufficient hell for them to take the same route out as the patient did

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    3. Understood , I agree

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  26. You gave great comfort to that young man.
    I do wonder why it is so difficult to allow adults to make choices about how they die, especially if incapacitated or not wanting to live with a terminal illness? Of course the living never want to let go of their loved ones, but sometimes it is crueler to keep them on artificial support if that is not what they want.

    The movie clip was beautiful and sad, just like your story. Thank you for taking care of people who need the comfort.

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  27. Whenever I can't find the words I send you two xx instead.

    xx

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  28. Your story is a testament to both Jim and his story. Thank you for sharing. Oh to feel the hand of someone on your cheek during this trying time for him and the comfort it brings. I am grateful that California has a death with dignity law. Hard won but just approved a couple years ago. I hope Jim is flying high!
    Ruth in California USA

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    1. We all need a hand on our cheek

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    2. I am reminded of this blogpost of fifteen years ago

      https://disasterfilm.blogspot.com/2006/02/little-actions-of-kindness.html

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  29. A very moving post. Well done. I read through all the comments, too.

    Love,
    Janie

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  30. Sadly, Jim was a prisoner in his own body and systematically decided he did not want to live. I very much support the right to die. Some states in the USA have legalized this. Vermont being one of them. The catch is you have to establish residence.

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  31. This made me cry. Why is it that we can comfort each other in the decision to end an animal's suffering, but a human making the decision to end his own suffering is controversial?

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  32. This clip has made me cry. Of course, a lot of things make me cry since my husband died, but this one really hit home. Not that he was paralyzed, just that I think about having things back the way they were before he got sick. I think you did well to think of a gesture that could possibly have brought some comfort to your patient. I hope it did.

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  33. I remember the post! I never met Winnie, but I miss her, too. I can hardly imagine what you feel.

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  34. Im not upset, your poignant and beautifully written post quietly shattered my heart...my husband died without dignity.

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