Over 37 years ago, I had a serious accident when I was 11 years old that resulted in my hip being broken in 2 places as well as a crushed pelvis. The prognosis was not good. One of my memories, as I flowed in and out of consciousness, were the doctor’s words to my father: “He’s one hell of a mess. If he survives the next two weeks, he will certainly be paralyzed!”. This meant that for the next four months I was essentially tied to a bed on an inverted traction board with wires, pulleys and weights at various angles - a torture device of the most ingenious design. For those four months I was almost totally dependent upon the nursing staff for the basic functions and necessitates of life. For almost two months, until sufficient healing had occurred, an enema was routine, and all toileting happened while confined in traction. I still break out in a cold sweat when I see a bed pan. Privacy was nonexistent and the embarrassment of the experience is still a strong memory. Keep in mind that all my nurses were female, ranging in age from grandmotherly to just graduating from nursing school – and I was a young shy boy.
Initially, visits from relatives where frequent, but after a month, decreased substantially. Both of my parents worked jobs which made it difficult for them to get time off work so loneliness set in. However, I did have one instrument of limited power – the call button. Think about it, tie an ADHD kid in a bed, shoot him full of pain control narcotics and give him a push button and you’ve got … yup you guessed it – TROUBLE! As a result, at some point a very agitated nurse would march in, grab the button and wrap the cord around the rail above my head out of reach. So, although I could see it, it dangled just out of my reach. At first I cried in frustration – and then eventually out of need – all to no avail. Until someone would come into the room and place power once again within my reach – occasionally accompanied with the chastisement and the warning of “I’ll take it away again if I have to.”
That experience became a foundational experience in my life. I think it’s probably one of the reasons why I fight for inclusion and friendship so hard. I remember the feelings of powerlessness, exclusion, loneliness, the shame and embarrassment that comes with complete total care, and of total reliance on the attention and responses of caregivers. Additionally, I remember the uncertainty of what the future held. It was two months before I would begin to hear from doctors that the prognosis was changing for the better and it appeared that I would regain the ability of limited, device assisted walking.
Then my main concern at that time became which nurses were scheduled to oversee me. Some were rough and brisk. They were basically there to do a job and I was basically a task. So, when it came time to adjust weights and pulleys I remember being afraid of which nurses would be doing that job. Some nurses would talk me through it, try to make me laugh, apologize, and/or encourage me that the adjustments would soon be over. While for others, it was merely a quick turn of the cranks, traction angles or the addition/removal of weights often done while talking to another nurse and barely acknowledging my existence let alone my pain.
By God’s Grace, that experience did come to an end. It was followed by another six months on crutches. At that stage, there were the barriers of stairs, doors, winter ice and the watching of everyone else run, play and forget about you as you sat on the sidelines to cope with. Never have I felt that level of total and complete physical powerlessness since. As I look back, I realize, that in a limited way, I had a front row seat to what it means to be physically disabled. Although I would never wish to experience that again, or have someone experience, that type of event, I would not exchange it because it has shaped me significantly.
I recently heard a different spin on the old proverb, “you need to walk a mile in another person’s shoes”. It was the revelation that in order to actually walk in the other person’s shoes, you need to remove yours first. That is tougher than it sounds. It means that I must get out of my own skin, feelings, judgments and assumptions and ‘wear’ the experience of another as best I can. We must constantly remember when giving supports that we are ‘experienced’ by the person receiving those supports. However, there is so much more to that person’s life than the task of giving that service. We all look for that instrument of power, no matter how small. Don’t remove it. It may annoy you, but it’s a life line to them.
Remember, Jesus never saw or treated people as a task. His whole ministry was about the restoration of true humanity.
Anyway, I was just thinking.
Neil
Initially, visits from relatives where frequent, but after a month, decreased substantially. Both of my parents worked jobs which made it difficult for them to get time off work so loneliness set in. However, I did have one instrument of limited power – the call button. Think about it, tie an ADHD kid in a bed, shoot him full of pain control narcotics and give him a push button and you’ve got … yup you guessed it – TROUBLE! As a result, at some point a very agitated nurse would march in, grab the button and wrap the cord around the rail above my head out of reach. So, although I could see it, it dangled just out of my reach. At first I cried in frustration – and then eventually out of need – all to no avail. Until someone would come into the room and place power once again within my reach – occasionally accompanied with the chastisement and the warning of “I’ll take it away again if I have to.”
That experience became a foundational experience in my life. I think it’s probably one of the reasons why I fight for inclusion and friendship so hard. I remember the feelings of powerlessness, exclusion, loneliness, the shame and embarrassment that comes with complete total care, and of total reliance on the attention and responses of caregivers. Additionally, I remember the uncertainty of what the future held. It was two months before I would begin to hear from doctors that the prognosis was changing for the better and it appeared that I would regain the ability of limited, device assisted walking.
Then my main concern at that time became which nurses were scheduled to oversee me. Some were rough and brisk. They were basically there to do a job and I was basically a task. So, when it came time to adjust weights and pulleys I remember being afraid of which nurses would be doing that job. Some nurses would talk me through it, try to make me laugh, apologize, and/or encourage me that the adjustments would soon be over. While for others, it was merely a quick turn of the cranks, traction angles or the addition/removal of weights often done while talking to another nurse and barely acknowledging my existence let alone my pain.
By God’s Grace, that experience did come to an end. It was followed by another six months on crutches. At that stage, there were the barriers of stairs, doors, winter ice and the watching of everyone else run, play and forget about you as you sat on the sidelines to cope with. Never have I felt that level of total and complete physical powerlessness since. As I look back, I realize, that in a limited way, I had a front row seat to what it means to be physically disabled. Although I would never wish to experience that again, or have someone experience, that type of event, I would not exchange it because it has shaped me significantly.
I recently heard a different spin on the old proverb, “you need to walk a mile in another person’s shoes”. It was the revelation that in order to actually walk in the other person’s shoes, you need to remove yours first. That is tougher than it sounds. It means that I must get out of my own skin, feelings, judgments and assumptions and ‘wear’ the experience of another as best I can. We must constantly remember when giving supports that we are ‘experienced’ by the person receiving those supports. However, there is so much more to that person’s life than the task of giving that service. We all look for that instrument of power, no matter how small. Don’t remove it. It may annoy you, but it’s a life line to them.
Remember, Jesus never saw or treated people as a task. His whole ministry was about the restoration of true humanity.
Anyway, I was just thinking.
Neil
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