Status
Not open for further replies.

arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
268
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
Astride Buggers 2 & 4, Little One and I were indulging in a late afternoon round of a favourite game: Powerchair Tip. On this particular day a couple of teenage kids were riding mountain bikes on the steep hillside across from our home, and we were no sooner down our drive than Little One volubly commanded them to get of “our” hill, which is, in point of fact, a council reserve. With a little careful persuasion she recanted, shouting with equal authority that they were now welcome to stay. It’s important to the story for you to know that the boys were fifty yards away, and might not have heard us, even if they hadn’t been oblivious to our presence. But, they were heading our way! Nothing gives Little One more pleasure that befriending complete strangers and she obviously considered the bond to have been sealed, because as soon as they reached the road she was there to greet them with High Fives. I tried to protect them from her onslaught of affection … a complete waste of effort.

It’s important to the story that you are acquainted with a couple more details. One is that my ten-year old has Down syndrome, and understanding her speech is tricky, to say the least. Another is that she sits cross-legged when driving B2, which is a sight to behold. Yet another is that even with the amplifier mounted on B4 my own voice is increasingly faint. So here’s the picture: two people on power chairs, one young, one old(ish); one vociferous but unintelligible, one articulate but inaudible; and two healthy young blokes on bikes. When Little One challenged them to a race their faces wore an expression of fixed, if polite, bewilderment. I reckon they were good young fellows, and they soon made a courteous escape. But it makes you wonder doesn’t it? What in the world did they make of us? What did they say to each other on the way home, and how did they describe the strange occupants of the house on the hill to their mates?

I witnessed the opposite reaction several months ago as a passenger on a coach. We had climbed the scenic Macquarie Pass south of Wollongong, and were passing through the string of quaint townships that nestle in the southern highlands. I happened to be looking out my window just as our driver gave the air horn two solid blasts – purposeful, cheerful peals – and I was rewarded by the sight of a couple of dozen people on the shady veranda of a rather nice pub, holding their drinks aloft and cheering in salute. Ned, our driver, flicked on the tannoy to offer his passengers a succinct, two-word explanation of this baffling greeting from the gallery: “My Local!” I had already taken a liking to Ned, and could understand the enthusiasm of his friends at the Pub. Ned was the authentic, likeable Aussie bloke. Popular, gregarious, reliable; exuding an understated confidence, he was a warm spirited, knockabout larrikin. The sort of fellow you feel you’ve known forever. Ned was a strong, solid man, with sparkling eyes and a beard to match his name.

Appearance is a funny thing. The world makes much of it; indeed a fair slice of the global economy is generated by our relentless pursuit of public approval. I think I’ve probably claimed to be disinterested in such things; but deep down I know I’m as vulnerable as the next guy. That’s why I found the shop-window reflection of myself driving B4 away from the supplier’s showroom so frightfully alien. It certainly wasn’t the image of myself that I had nurtured all these years!

“Not normal!” is a schoolyard taunt, offered to intimidate all who fail to fit the mould. But it’s a weak threat; a non-statement. It sounds tough, but delivers nothing; because normality is simply maths, nothing more. It’s a bogey man. Who on the planet is actually ‘normal’, for goodness sake?

Nonetheless, I want to know this: Can the gradual stripping away of so called ‘normal’ appearance give us the opportunity to live more authentically? I’ve always liked Isaiah’s prophetic description of the Messiah: “He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him”. Can the process of reduction – which happens to us all, whether by infirmity, injury or age –reveal integrity closer to the core of our being? Can the process of disabling help us to truly be, rather than just to appear? Esse quam videri, or is that too simple? Are we too human for that?

What do you think?

____________________________________________________

Esse quam videri: to be, rather than to appear. Virtute enim ipsa non tam multi praediti esse quam videri volunt (Few are those who wish to be endowed with virtue rather than to seem so). From Cicero’s De Amiciti (C 44BC).
 
Glad to see this appear, Roderick. Appearance is our natural way of making judgments, isn't it... You'd be more aware than most since you have a daughter with Down Syndrome. There was a national news story last night, I believe, about a boy who limped, the school children who first mocked his limp, then progressed on to the entire person, until he considered suicide. No one, including his parents, took his complaints seriously, until suicide seemed a very real possibility. Counseling followed, then getting involved in a church where one kid in the youth group made friends with him. There, once one friendship was made, others followed (the opposite progression from school), until finally the boy went back to school with his new friend and became self assured enough for others to be able to see who he was in reality. For him, "appearance" was hurtful to him, but "his being" was attractive, and happily overcame his appearance.

Yes, in our stripping away, as you called it, of our appearance, I think we can become more real. Thanks for your insight, as always!

Ann
 
Does the stripping away provide an opportunity to live authenticity, suggesting a choice, or does it throw us into a world where we must be true to our strengths and limits? I lean toward the "thrown into" group, but I believe that once we are there we can learn more about ourselves and what our strengths are, and how we can use them to overcome what we can and accept what we can't. Those that are happy learn this, but I think those who grow sad are too stuck on what was or what should have been to see what really is. When you limit yourself to your personal temple, your space is confined, controlled and all your own. What you think and perceive is what lives there and you can choose to block out or let in what others think and perceive. Easier for adults, for sure because we can afford to be individual but the poor youth who is trying to be accepted, to belong, to learn their identity puts way too much importance on what others think and perceive.
Perhaps the stripping away can bring a humility that we need to properly accept ourselves as a gem in our own right and can help us to diminish the importance we give to what OTHERS think and perceive. When it is all said and done, and we meet our maker, I am sure the discussion will be more about how much we did or did not appreciate the gift we were given, and what we did or did not DO with that gift.
 
I lean toward the "thrown into" group, but I believe that once we are there we can learn more about ourselves...
.

'Thrown in' is right! Thanks for all those thoughts. I particularly liked your thought about the difference between what should have been, and what actually is. I do think that is such a sticking point, and it's helpful to just stay with what is. It really doesnt work going anywhere else does it?
 
Too true. I am still sad for Tom on that point. He has always lived his life in the past; always dreaming about the good old days, never really grabbing onto today and we never ever shared dreams about tomorrow. I was so busy planning out my life that I didn't even notice until we had been married 10 years. ALS hit and he has been struggling even more-- still looking at the past. "I used to be able to....." is his life sentence in so many ways.
The rest of our family has had to take this pining with a grain of salt because with children their future is something to be encouraged. They all need to fledge to be healthy and looking forward is the only way to do so.
I have had to act as mother AND head of the family for a long time, just to keep house and home together. Fortunately, my nature is to look for the good or the possibilities in everything (to keep sane) so for Tom's sake I have walked toward those things and draged him, kicking and screaming behind me, but never pushing beyond his ever changing limits. I guess I am lucky that this has always been the way with him. I got a lot of practice before the ALS, like I was being prepared for all of this.
 
Ahhh..the opportunity to share one's true heart as authentically and transparently as possible is such a gift! Given to the souls who have been stripped of the outward appearance of normal. An opportunity to open the door to meaningful conversations, to look deeply into another's eyes and understand the depth of their character, a chance to see a soaring spirit without the movement of one's body, a devine discussion about life's journey and the presence of the Almighty who sustains, provides and guides--a true gift!

Thank you so much for writing! Marie
 
Marie, wow--you have a writing gift also. Very good to hear your thoughts.
Ann
 
An opportunity to open the door to meaningful conversations, to look deeply into another's eyes and understand the depth of their character, a chance to see a soaring spirit without the movement of one's body, a devine discussion about life's journey and the presence of the Almighty who sustains, provides and guides--a true gift!

Marie,
I just loved your words. Inspired!
 
Too true. I am still sad for Tom on that point. He has always lived his life in the past; always dreaming about the good old days, never really grabbing onto today and we never ever shared dreams about tomorrow. I was so busy planning out my life that I didn't even notice until we had been married 10 years. ALS hit and he has been struggling even more-- still looking at the past. "I used to be able to....." is his life sentence in so many ways.
The rest of our family has had to take this pining with a grain of salt because with children their future is something to be encouraged. They all need to fledge to be healthy and looking forward is the only way to do so.
I have had to act as mother AND head of the family for a long time, just to keep house and home together. Fortunately, my nature is to look for the good or the possibilities in everything (to keep sane) so for Tom's sake I have walked toward those things and draged him, kicking and screaming behind me, but never pushing beyond his ever changing limits. I guess I am lucky that this has always been the way with him. I got a lot of practice before the ALS, like I was being prepared for all of this.

I have been thinking about your story for a few days, it's a sad one and I feel for you. Surely there are enough difficulties with manageing ALS without having a backwards perspective; and yet I would think if any disease were prone to give one a back-looking view of life it would be this one! How difficult. You have a note of hope in your thoughts though, recognising that you have had plenty of training already! I hope that it the paradigm you describe doesnt rob you or your family of the good times that remain for you all. Thank you for your thoughts.
 
Status
Not open for further replies.
Back
Top