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arkallen

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Joined
Mar 8, 2009
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268
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Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
The tropical surroundings of our Northern Territory building site were lush and verdant, and our activity attracted the interest of a fat, green frog. This guy was enormous. He was stupendous, an amphibian of gargantuan proportion! We were fitting out the kitchen, so we put him on a dinner plate (which he almost eclipsed!) with a little moat of water to cool his fat green hide. He stayed with us throughout the day, and though no one actually saw him move around in his porcelain pond, no matter where in the kitchen we were working he was always facing directly toward us, staring us down with his beady black eyes.

I’ve recently discovered that B4* and I can perfectly mimic the fat frog's technique. I park myself bang in the middle of the kitchen, and wherever my Favourite Wife happens to be working, that's where I point! She seems as surprised and perplexed by my behaviour as we were by the frog's; but where we found the fat green frog's antics rather endearing, mine seem not to be. Not if my Favourite Wife's reaction to my watchful presence is any guide. "Get out of my kitchen!" she will finally erupt, usually after several polite suggestions that a wiser and more sensitive husband would have taken on board.

Which brings me to a most delicate topic: why is it that disabled people (people like me, for example) can be (very occasionally) so darned annoying?

Two or three years ago I watched as a woman asked for help once too often. She was a small woman, she walked with difficulty, and she was meeting a friend in a popular cafe. Her companion seemed a warm and generous person; and I must confess to having spied a little on their friendship. The small woman needed to access the washroom which was guarded by a heavily sprung door. If it had been possible for her to have asked for help in an easy, unaffected manner, if she could have asked her friend to open the door the way a workmate says “chuck us a screwdriver mate”, then all would have been well. But it was no more possible for her ask naturally for assistance than it was possible for her to open the door without it. There had been too many requests of too many people for too many years. Perhaps there was only a hint of awkwardness or apology in her voice, but it was enough to nudge an unmistakable wedge of tension between them. As I watched this scene play out I empathized with the helpful friend's mild annoyance, and more keenly with the small woman's despair. I was an onlooker then, and I turned away from the scene with all its ordinary pain to attend to the simpler task of drinking my coffee; leaving them to their business which was none of mine.

Well, things change, don't they? I am no longer an onlooker to this drama; and perhaps I never was.

As I see it, the nearly insurmountable challenge is to retain a natural voice and a normal vocabulary even as the ‘normal’ world slips from reach. I think this comes both from the frustration of personal incapacity, and from the knowledge that someone will be inconvenienced, if only slightly, by each and every request.

Hesitancy is another dilemma. My Favourite Wife, patient soul, might say, “Anything you need honey?” and I am paralysed with indecision. Is the trifling thing on my mind, like a cup of tea or something from another room, really worth her time? What does the broiling sea of my emotions have to contribute to this minor decision? By the time I decide that yes, I do want something, she's halfway up the hall again. “Honey”, I call out, “could you just......” Now, that's annoying!

My Dear asks me why I sound so surprised when she offers, for the 40th time in a day, to help me in some way. My tone of surprise is a merely a defence, of course. A way of erasing the existence of the previous 39 assists, and a subtle denial of the fact that I need any help at all. It carries the dangerous risk of offense: conveying the idea that I find her kindness somehow unexpected. Now, that’s darned annoying!

It's double jeopardy. Not only does disability distance you in many compounding ways from human interaction; but the interactions themselves - those moments that should be redemptive gifts of grace - can be laden with complexities that only widen the gap. As another frog wisely noted, “It's not easy being green”.

I'm not sure that this vortex can actually be escaped. The command that we love one another has an obvious corollary: people need to be loved; and loving is no mean feat. And so I am deeply grateful for the help my family and my friends offer, and I am more grateful still for the safe haven they provide in which I can learn a new language of love.

My challenge: To look you in the eye, to speak to you as I always have, to trust you, to trust myself, and to be at peace with the truth that – like it or not – we are in this together.

Rejoice!



* That's B4, the power chair with the fantastically tight turning circle!
 
just joined the forum but have read this guy previous stuff . . Does this
guy have a way with words or what
 
alex scared, he sure does. And, welcome to the forum!

Roderick,

You sure cover a lot of our foibles in this post. I'm right there with you. Regarding the kitchen, the only way to be present is to find a place to park where you cannot possibly be in the way. It's a luxury I do have; I park where I will later eat, which in my case is with elevated legs and tilt alongside the table, not "under it". And I will often do without rather than ask for yet another thing to be done for me.

To quote your words: "The command that we love one another has an obvious corollary: people need to be loved; and loving is no mean feat. And so I am deeply grateful for the help my family and my friends offer, and I am more grateful still for the safe haven they provide in which I can learn a new language of love."

I have been told repeatedly by friends that they really do want to take care of me, but in planning what to ask for, there is always that hidden doubt... maybe they're getting tired of my neediness. Now, Phil is easy to read. And if he asks if I want anything, yes... it's best to know what I want and tell him asap. Yet, even regarding him, I sometimes think the pile of little things will become too big a pile. We need a lot.

Your challenge is a very good one, and Roderick, I am glad you wrote it out; that you thought it out. I will try to meet the challenge. Thank you once again.

Ann
 
Roderick, thank you yet for another wonderful expression of feelings and situations that we all must deal with on one side of the fence or the other!
 
Hello Alex Scared;
I've just read your post and I can feel your anxiety. It's a very tough time. I hope you find some clarity quickly, and I hope you have some other good things going on in your world to keep you going.
 
Roderick, thank you yet for another wonderful expression of feelings and situations that we all must deal with on one side of the fence or the other!

CJ, you're so right. Almost everyone will be one one side or the other eventually. I find that a reassuring thought.
 
hi roderick thank you for your kind words . its was your previous breath of life entry that inspired me to wanna reach out for support. . You were certain born with a gift of putting words together. .
 
Roderick,
This is a hard hard thing for me to come to grips with. The transformation to disabled person is only months old. Used to be that if I had help from friends on projects around the house, they could count on me to pitch in when they had work to do. Now I can't, and it makes me really uncomfortable.
 
hi roderick thank you for your kind words . its was your previous breath of life entry that inspired me to wanna reach out for support. . You were certain born with a gift of putting words together. .

Alex,
I'm glad you reached out! If there's a 'gift' then I think it is the gift of companionship; we are all going through this (whatever it happens to be) and thankfully we don't need to do it alone. I'm writing at 4am because the "Breath of Life" is giving me trouble - but there are people like you to share with! So hang in there mate, don't panic! You're not alone.
 
Roderick,
This is a hard hard thing for me to come to grips with. The transformation to disabled person is only months old. Used to be that if I had help from friends on projects around the house, they could count on me to pitch in when they had work to do. Now I can't, and it makes me really uncomfortable.

Tom,

It is 'hard hard'! We had an inspection by our real-estate yesterday; and to get ready I called on eight friends. It's wonderful to have those friends, but it's sort of surreal to watch yourself sitting down while everyone is busy. Hard to take! It strikes at a deep chord doesn't it?
 
... and to be at peace with the truth ...

Rejoice!

Thank you for the most excellent challenge Roderick! Your wise frog then summarized his pigmentation ponderings with:

"When green is all there is to be
It could make you wonder why, but why wonder why
Wonder, I am green and it'll do fine, it's beautiful
And I think it's what I want to be"

The difficulty is to be at peace with being green, getting to the place where "it'll do fine."
Even the trivial requests for help can seem to be a mirror reflecting our new shade, and the dreaded request for help on a newly lost activity showing the shade of green has once again shifted in the spectrum.

Similar to Tom and yourself (and likely everyone on this forum), I knew what I could do when I was a red/yellow/blue person. But as I hold to the promise that "we have gifts that differ according to the grace given to us, each of us is to exercise them accordingly."... while picking up a hammer or paintbrush is no longer an option, I still have green gifts. I hope exercising these helps to narrow the gap you refer to.

So to your "Rejoice!", I reply with a hearty "Ribbet!"
KBO!

Brian
 
roderick . . This whole breathin thing is soo uncomfortable its enough to drive you mad . . Not wanting to barge in on this thoughtful and wonderfully worded thread i will just wish you my condolences on the hammerin we are about to give you in the forth coming ashes . . Lol . . . Hope you get some good quality sleep soon . .
 
Thank you Brian! You are absolutely right. Can't pine over what was. I am green now and that is my gift. I am immensely grateful for the friends and family around me. The best exercise of my new gift is to KBO with a positive attitude and show the Love of God to those around me.
 
Roderick, as always it is a pleasure to read your writings. If I didn't know better I would say you are in our house and my body observing every move and thought. My wife said it best last night after reading your post "he nailed it".

Life with ALS is not a death sentence it's a way to experience life from a different perspective.

Jim
 
Brian, Tom and Jim, I wholeheartedly agree. Alex and Roderick, hope you slept better last night. KBO,
Love,
Ann
 
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