Hey, It's Good to Be Back Home Again...
Posted Oct 21, 2010 11:28am
"Hey, It’s Good to Be Back Home Again…"
I had the pleasure of plugging in the headphones while packing up my eBay packages the other day and listening to a few John Denver songs, and this one graced the list. As I hummed along while taping on a label, “Hey, it’s good to be back home again…Sometimes this old farm feels like a long lost friend…”, I stopped mid project. I had to ask myself, “Really?” And what kind of long, lost friend would that be anyway?
As Phil recovers from his horrific surgery in nothing short of miraculous ways, I am finding that reality has taken on yet another facet. Like the diamond that life is, a few chisel blows and buffings later, we see evidence that we are moving toward a complete project – a stone that has more shape than it did when it was mined from the earth, and the promise that indeed, someday, it will rest in a setting that will enhance its features, beautifully stunning and shining in the light. But the process of getting there is starting to feel more like the pressures of the coal bed from whence it came!
Phil started back to school last Wednesday, and although we had to run over and help the teachers and aides transfer him, and educate them on his “care and feeding”, it has gone off without a hitch. He is happy to be back at school, back in the social order, and resuming what might loosely be called a schedule. And all is well.
For the most part.
The part that I share here; the part that I tell people about on the phone; the parts that are flowing smoothly; these parts are fine! I tell them about how awesome his scar looks, how his energy level is creeping back up to his normal and how we hope that it makes a full rebound. I tell them how he ate real food, and is adapting to his “robot arm”, and how we finally got an appointment for physical and occupational therapy!
But there are so many details I leave out. And that seems to be the case and course of this nasty disease. It’s 1001 little things that happen inside the four walls called “home” that simply do not bear repeating. Questions I have for which there are no answers forthcoming. How to deal with some of the extremely unique situations that Duchenne presents you with…well, you are pretty much on your own to learn the dance as you go.Which leaves you feeling like a bit of a spaz, as the music starts and you have no idea which way to step and move. You just gotta make it work.
I have put many questions to the chat groups, and received as many great answers, which are, in fact, just ideas on how I might retrofit what worked for one family into our own situation here. And sure, there are the “manuals” written, how to choose a proper hospital bed, commode, shower chair and wheelchair (as if Title 19 gives you a choice in the matter). How to cope with the losses and trials in the most generic of ways, because they simply cannot account for all the variables in a boy’s life. How to deal with the emotional and mental issues is a tip-toe through the mine field of human experience. No one knows what’s buried where. You are on your own, and the best you can hope for is a tip, or a helpful hint for cleaning up the damages when you got unlucky.
And it’s the little things. The things that are intensely personal, that you really don’t want to share. Things people will not “get” unless they have faced them first hand. Things that will no doubt bring judgment and condemnation for someone who is quite sure they would have handled it differently. Things that would invade the privacy of your son should you choose to go public with them, in areas such as personal hygiene or sexuality or emotional awareness. What is the barometer of “normal” here? By what do we measure our successes and failures? Are there any…really?
As a caregiver to one such as Phil, there are days I feel like Alice in Wonderland, down the rabbit hole, don’t remember how to get back out of it, and a whole new world of intensely strange creatures milling about. It’s not like being dropped into Russia, where if culture shock has you confused – you at least have the hope of finding someone who speaks English and everybody there is, at least, a human being. Here, it’s like another planet. Nothing functions the same – or precious little. But the commonalities are ultra-primitive, stripped down to the basics of life – eating, sleeping, locomotion, elimination. But these things, instead of being automatic as per my previous norm, are now the very focal points of a day. They are, in fact, all that seem to matter. And you find yourself talking about them non-stop, while the listeners stare rather dumbfoundedly. We don’t usually talk about “the automatics” with such intensity with the girls at the water cooler:
“Say, Linda, you will just HAVE to try this new way to transfer to the toilet! It’s so efficient!”
“Wow, Sandy, thanks for sharing that! That will really help avoid those little accidents that take 45 minutes to clean up.”
Now the four walls you call home have become a little microcosm of your former existence. A whole lot smaller, and that’s actually a blessing, because nobody wants the up-keep and cleaning of a million square feet on their to-do list, or an Everest of laundry – my 1800 feet is enough to keep up with, thank you. And contact with the outside world has been taken to a different level. I actually entertained a bill collector on the phone the other day just to talk about something “normal”, and rather enjoyed their squirming when I pleasantly answered every question with, “But there IS no money,” accenting different syllables with each question. Pretty soon, they have nothing more to say than “Have a nice day”.
By the time I hung up, however, I learned a little life lesson. That I just was not as upset as I normally would have been. It’s just money. When I have it, I’ll fork it over. But I don’t right now. Oh well. I have bigger things to freak out about, and I save my freak-outs for stuff that will be more gratifying than bills – where you feel like your freak-out paid off! For instance, Rachel called me this morning – ran out of gas. I did not at all feel like going out into the chill morning air, running for gas and standing on the highway. In another time, I might have been pissed. How irresponsible! We TOLD her about the gas situation! But as I donned my flannel, I figured, she learned. Will the lesson be driven home any further if I arrive spouting expletives and stomping my feet? Nah. Instead I just laughed at her. “Gambled and lost, eh?” What’s the big deal? It is, after all, a lovely fall morning, which I would not have had the chance to stand in otherwise.
I am in effect learning to put my life into a different perspective. Starting once again with baby steps – literally – back to the basics of life as mentioned above. Peeling away the layers of superficiality, assessing what really matters; what is most important in life. Deciding what I want to spend my energy on, and what is simply not worth the fit of pique. Scrubbing the politics, and the posturing, and in some cases having to challenge the limits of societally appropriate speech in exchange for getting one’s point across. Life is stripped down and bare at this point. There is nothing left to hide behind.
And so home is a good place for this be accomplished. It’s a different home than I remembered – or have experienced before, but it’s still home. And here I am this morning, parading about in my emotional underwear, a little less worried that someone might see me. We can do this in our homes. It’s our space. It’s our comfort zone. It’s safe here. And it IS good to be back home again.
I had the pleasure of plugging in the headphones while packing up my eBay packages the other day and listening to a few John Denver songs, and this one graced the list. As I hummed along while taping on a label, “Hey, it’s good to be back home again…Sometimes this old farm feels like a long lost friend…”, I stopped mid project. I had to ask myself, “Really?” And what kind of long, lost friend would that be anyway?
As Phil recovers from his horrific surgery in nothing short of miraculous ways, I am finding that reality has taken on yet another facet. Like the diamond that life is, a few chisel blows and buffings later, we see evidence that we are moving toward a complete project – a stone that has more shape than it did when it was mined from the earth, and the promise that indeed, someday, it will rest in a setting that will enhance its features, beautifully stunning and shining in the light. But the process of getting there is starting to feel more like the pressures of the coal bed from whence it came!
Phil started back to school last Wednesday, and although we had to run over and help the teachers and aides transfer him, and educate them on his “care and feeding”, it has gone off without a hitch. He is happy to be back at school, back in the social order, and resuming what might loosely be called a schedule. And all is well.
For the most part.
The part that I share here; the part that I tell people about on the phone; the parts that are flowing smoothly; these parts are fine! I tell them about how awesome his scar looks, how his energy level is creeping back up to his normal and how we hope that it makes a full rebound. I tell them how he ate real food, and is adapting to his “robot arm”, and how we finally got an appointment for physical and occupational therapy!
But there are so many details I leave out. And that seems to be the case and course of this nasty disease. It’s 1001 little things that happen inside the four walls called “home” that simply do not bear repeating. Questions I have for which there are no answers forthcoming. How to deal with some of the extremely unique situations that Duchenne presents you with…well, you are pretty much on your own to learn the dance as you go.Which leaves you feeling like a bit of a spaz, as the music starts and you have no idea which way to step and move. You just gotta make it work.
I have put many questions to the chat groups, and received as many great answers, which are, in fact, just ideas on how I might retrofit what worked for one family into our own situation here. And sure, there are the “manuals” written, how to choose a proper hospital bed, commode, shower chair and wheelchair (as if Title 19 gives you a choice in the matter). How to cope with the losses and trials in the most generic of ways, because they simply cannot account for all the variables in a boy’s life. How to deal with the emotional and mental issues is a tip-toe through the mine field of human experience. No one knows what’s buried where. You are on your own, and the best you can hope for is a tip, or a helpful hint for cleaning up the damages when you got unlucky.
And it’s the little things. The things that are intensely personal, that you really don’t want to share. Things people will not “get” unless they have faced them first hand. Things that will no doubt bring judgment and condemnation for someone who is quite sure they would have handled it differently. Things that would invade the privacy of your son should you choose to go public with them, in areas such as personal hygiene or sexuality or emotional awareness. What is the barometer of “normal” here? By what do we measure our successes and failures? Are there any…really?
As a caregiver to one such as Phil, there are days I feel like Alice in Wonderland, down the rabbit hole, don’t remember how to get back out of it, and a whole new world of intensely strange creatures milling about. It’s not like being dropped into Russia, where if culture shock has you confused – you at least have the hope of finding someone who speaks English and everybody there is, at least, a human being. Here, it’s like another planet. Nothing functions the same – or precious little. But the commonalities are ultra-primitive, stripped down to the basics of life – eating, sleeping, locomotion, elimination. But these things, instead of being automatic as per my previous norm, are now the very focal points of a day. They are, in fact, all that seem to matter. And you find yourself talking about them non-stop, while the listeners stare rather dumbfoundedly. We don’t usually talk about “the automatics” with such intensity with the girls at the water cooler:
“Say, Linda, you will just HAVE to try this new way to transfer to the toilet! It’s so efficient!”
“Wow, Sandy, thanks for sharing that! That will really help avoid those little accidents that take 45 minutes to clean up.”
Now the four walls you call home have become a little microcosm of your former existence. A whole lot smaller, and that’s actually a blessing, because nobody wants the up-keep and cleaning of a million square feet on their to-do list, or an Everest of laundry – my 1800 feet is enough to keep up with, thank you. And contact with the outside world has been taken to a different level. I actually entertained a bill collector on the phone the other day just to talk about something “normal”, and rather enjoyed their squirming when I pleasantly answered every question with, “But there IS no money,” accenting different syllables with each question. Pretty soon, they have nothing more to say than “Have a nice day”.
By the time I hung up, however, I learned a little life lesson. That I just was not as upset as I normally would have been. It’s just money. When I have it, I’ll fork it over. But I don’t right now. Oh well. I have bigger things to freak out about, and I save my freak-outs for stuff that will be more gratifying than bills – where you feel like your freak-out paid off! For instance, Rachel called me this morning – ran out of gas. I did not at all feel like going out into the chill morning air, running for gas and standing on the highway. In another time, I might have been pissed. How irresponsible! We TOLD her about the gas situation! But as I donned my flannel, I figured, she learned. Will the lesson be driven home any further if I arrive spouting expletives and stomping my feet? Nah. Instead I just laughed at her. “Gambled and lost, eh?” What’s the big deal? It is, after all, a lovely fall morning, which I would not have had the chance to stand in otherwise.
I am in effect learning to put my life into a different perspective. Starting once again with baby steps – literally – back to the basics of life as mentioned above. Peeling away the layers of superficiality, assessing what really matters; what is most important in life. Deciding what I want to spend my energy on, and what is simply not worth the fit of pique. Scrubbing the politics, and the posturing, and in some cases having to challenge the limits of societally appropriate speech in exchange for getting one’s point across. Life is stripped down and bare at this point. There is nothing left to hide behind.
And so home is a good place for this be accomplished. It’s a different home than I remembered – or have experienced before, but it’s still home. And here I am this morning, parading about in my emotional underwear, a little less worried that someone might see me. We can do this in our homes. It’s our space. It’s our comfort zone. It’s safe here. And it IS good to be back home again.
No comments:
Post a Comment