Lessons in Empathy
I'm a reluctant caregiver. That makes me an oddball in my profession of nursing, I know. I sense that some of my colleagues have seen this as a problem, or even a character fault. Maybe it is.
Now, don't get me wrong. I do care. Immensely. About many things, and about people who are interested in changing lifestyles or attitudes or endemic psycho-social issues or family issues to improve quality of life and health for all. Otherwise, I detest care-giving. Some say I should have been a teacher, a writer, or a lawyer.
I've got a low tolerance for resistance to change, though I am capable of accepting things that cannot be changed if every last option for change has been explored before reaching that conclusion. That's why I suggested a new way to pray The Serenity Prayer several years ago--something that's also included in Enlarging Boston's Spotlight: A Call for Courage, Integrity, and Institutional Transformation.
There's a lot of room in the nursing profession, as well as with social activists, for patient educators committed to the empowerment of change. Those of us who are so inclined understand these processes often take time for adaptation to occur, but we do not easily accept stagnation.
Yet, the ditch, or downside, with this characteristic is that we have to work hard to resist throwing in the towel. Burnout, that is. That's why an occasional turn at being patients ourselves is so good for our flock, same as with many physicians. If nothing else, it can instill in us some much-needed patience and empathy for individuals with a limited capacity to change, either due to permanent disability beyond the control of the sufferer. Or due to incapacitating fears. Or a variety of other reasons that create mental or social resistance.
This role reversal can change our entire outlook.
Did I ever get a crash course over the past two weeks!! Never even saw it coming, only minutes after three games of bowling. That's when I got distracted and picked up my 15 lbs. of gear, same as I do every week. Except not in the same way. I know better from past experience--that's what I found most troubling.
Not in years have I tried going up steps with that much weight imbalance--not a good idea for anyone in the 8th decade of life. For heaven's sakes! I KNOW that.
Within 36 hours, I also knew I wasn't going anywhere for a few days. I was stuck--literally unable to do more than crawl, in the basement, fortunately close to bed, bath and recliner, while my husband (from his power wheel chair) managed to attend to me and also two guests upstairs. One, a college student, a soccer player with a complicated injury and his father, a biology professor from Israel. Fortunately, the father--now the only person in our house who could walk--assured us he'd be close-by if we needed anything. It was quite a comfort after watching this very capable caregiver for a week in this home-away-from-home while the son on complete bed rest, recovered from two surgeries.
However, next day, the doctor pronounced the son could go back to school. So the two moved out.
Finally, it dawned on me. We have two power wheel chairs and two rollators (walkers with seats). How quickly I learned to adapt, using one or the other, though still housebound. Ron and I laughed frequently as we sent warnings to one another in our dance, hoping to prevent crashing into one another with our speedy contraptions.
Now, for six years, I've been saying that all the characters who go around inspecting buildings in our city, signing off on ADA regulations and missing things, even in new buildings, simply need to be forced to spend 24 hours in a power wheel chair, navigating thru parking lots and in and out of these structures they approve. Suddenly, I had a dose of that prescription, all my own.
The result: Before I even got back on my feet, I was seeing solutions to implement in our own household--things my poor husband had accepted as inevitable. They were problems I did not even know existed because I'd never been in his shoes. On his six wheels, that is.
The question I kept asking myself: "How would I possibly manage if I was forced to accept life in a wheel chair permanently?" Believe me, it didn't take long to figure a lot of things out. For the next two weeks, I made it a daily mission to figure it out--not just for myself, but also for Ron.
He has very limited range of motion, compared to me, so I had to take that into account as I saw his world through a whole new set of eyes. Very similar to the small child who looks at the family or a whole crowd of people towering above him, with a host of things they can reach that are totally out of range for him. Which forces him to be more dependent than he needs to be. Plus, unable to help with the cooking very much. A-ha! That's the caveat for me. Believe me, things are definitely going to change in our kitchen cause I now see how to make it happen.
Things are about to change--with my expectations, as much as the structural things still needing work around here. I understand fully why this new chair he recently was forced to use is so difficult to drive, compared to the last one. These darn things should come with driving instructions. Plus, rear-view mirrors, speed controls, and pads on all the metal appendages that cause serious damage to otherwise lovely woodwork.
I was also angry that we have come to the place in America that being a normal-sized individual in a power wheel chair is the exception rather than the norm. Yes. You heard me. Morbid obesity is now so expected that the normal-sized wheel chair is a "special order," meaning it costs too much for Medicare to approve. Gr-r-r-r! So people who work hard to stay at normal size must now deal with chairs that are more dangerous because of the weight, more destructive to personal property, and harder to navigate similar to the difference in driving a Mack truck and a pickup. Hello, America. Is it too idealistic for me to believe this situation might be reversed someday?
In the process of pushing that joy stick around, I got even angrier with the fact that patients are put in these contraptions without automatically being assigned an occupational therapist. I was also angry at myself. Why had I not demanded his doctor see the need for this six years ago, when he first qualified for one.
So now, due to a new shoulder injury of his that's resulted, an occupational therapist is on order, due to arrive after the physical therapy to fix the shoulder. Yes, I now see things from a whole new perspective.
Call me selfish, if you like. I've got more reasons than one for my madness. This care-giver needs a lot more help in the kitchen, and Ron, who enjoys cooking, is fully capable when we get a few adjustments made.
So I'm back on my feet now. Together we're marching to a whole new beat! A little wiser, I hope, and planning to stay there as long as possible. Reminding myself that, before giving advice to the disenfranchised, we'd do well to take some lessons from the real experts--those who have actually lived the experience.
Now, don't get me wrong. I do care. Immensely. About many things, and about people who are interested in changing lifestyles or attitudes or endemic psycho-social issues or family issues to improve quality of life and health for all. Otherwise, I detest care-giving. Some say I should have been a teacher, a writer, or a lawyer.
I've got a low tolerance for resistance to change, though I am capable of accepting things that cannot be changed if every last option for change has been explored before reaching that conclusion. That's why I suggested a new way to pray The Serenity Prayer several years ago--something that's also included in Enlarging Boston's Spotlight: A Call for Courage, Integrity, and Institutional Transformation.
There's a lot of room in the nursing profession, as well as with social activists, for patient educators committed to the empowerment of change. Those of us who are so inclined understand these processes often take time for adaptation to occur, but we do not easily accept stagnation.
Yet, the ditch, or downside, with this characteristic is that we have to work hard to resist throwing in the towel. Burnout, that is. That's why an occasional turn at being patients ourselves is so good for our flock, same as with many physicians. If nothing else, it can instill in us some much-needed patience and empathy for individuals with a limited capacity to change, either due to permanent disability beyond the control of the sufferer. Or due to incapacitating fears. Or a variety of other reasons that create mental or social resistance.
This role reversal can change our entire outlook.
Did I ever get a crash course over the past two weeks!! Never even saw it coming, only minutes after three games of bowling. That's when I got distracted and picked up my 15 lbs. of gear, same as I do every week. Except not in the same way. I know better from past experience--that's what I found most troubling.
Not in years have I tried going up steps with that much weight imbalance--not a good idea for anyone in the 8th decade of life. For heaven's sakes! I KNOW that.
Within 36 hours, I also knew I wasn't going anywhere for a few days. I was stuck--literally unable to do more than crawl, in the basement, fortunately close to bed, bath and recliner, while my husband (from his power wheel chair) managed to attend to me and also two guests upstairs. One, a college student, a soccer player with a complicated injury and his father, a biology professor from Israel. Fortunately, the father--now the only person in our house who could walk--assured us he'd be close-by if we needed anything. It was quite a comfort after watching this very capable caregiver for a week in this home-away-from-home while the son on complete bed rest, recovered from two surgeries.
However, next day, the doctor pronounced the son could go back to school. So the two moved out.
Finally, it dawned on me. We have two power wheel chairs and two rollators (walkers with seats). How quickly I learned to adapt, using one or the other, though still housebound. Ron and I laughed frequently as we sent warnings to one another in our dance, hoping to prevent crashing into one another with our speedy contraptions.
Now, for six years, I've been saying that all the characters who go around inspecting buildings in our city, signing off on ADA regulations and missing things, even in new buildings, simply need to be forced to spend 24 hours in a power wheel chair, navigating thru parking lots and in and out of these structures they approve. Suddenly, I had a dose of that prescription, all my own.
The result: Before I even got back on my feet, I was seeing solutions to implement in our own household--things my poor husband had accepted as inevitable. They were problems I did not even know existed because I'd never been in his shoes. On his six wheels, that is.
The question I kept asking myself: "How would I possibly manage if I was forced to accept life in a wheel chair permanently?" Believe me, it didn't take long to figure a lot of things out. For the next two weeks, I made it a daily mission to figure it out--not just for myself, but also for Ron.
He has very limited range of motion, compared to me, so I had to take that into account as I saw his world through a whole new set of eyes. Very similar to the small child who looks at the family or a whole crowd of people towering above him, with a host of things they can reach that are totally out of range for him. Which forces him to be more dependent than he needs to be. Plus, unable to help with the cooking very much. A-ha! That's the caveat for me. Believe me, things are definitely going to change in our kitchen cause I now see how to make it happen.
Things are about to change--with my expectations, as much as the structural things still needing work around here. I understand fully why this new chair he recently was forced to use is so difficult to drive, compared to the last one. These darn things should come with driving instructions. Plus, rear-view mirrors, speed controls, and pads on all the metal appendages that cause serious damage to otherwise lovely woodwork.
I was also angry that we have come to the place in America that being a normal-sized individual in a power wheel chair is the exception rather than the norm. Yes. You heard me. Morbid obesity is now so expected that the normal-sized wheel chair is a "special order," meaning it costs too much for Medicare to approve. Gr-r-r-r! So people who work hard to stay at normal size must now deal with chairs that are more dangerous because of the weight, more destructive to personal property, and harder to navigate similar to the difference in driving a Mack truck and a pickup. Hello, America. Is it too idealistic for me to believe this situation might be reversed someday?
In the process of pushing that joy stick around, I got even angrier with the fact that patients are put in these contraptions without automatically being assigned an occupational therapist. I was also angry at myself. Why had I not demanded his doctor see the need for this six years ago, when he first qualified for one.
So now, due to a new shoulder injury of his that's resulted, an occupational therapist is on order, due to arrive after the physical therapy to fix the shoulder. Yes, I now see things from a whole new perspective.
Call me selfish, if you like. I've got more reasons than one for my madness. This care-giver needs a lot more help in the kitchen, and Ron, who enjoys cooking, is fully capable when we get a few adjustments made.
So I'm back on my feet now. Together we're marching to a whole new beat! A little wiser, I hope, and planning to stay there as long as possible. Reminding myself that, before giving advice to the disenfranchised, we'd do well to take some lessons from the real experts--those who have actually lived the experience.
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