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arkallen

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AU
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21 months into this condition and I fear I am becoming self-consumed. I feel like the Old Testament prophet Jonah, who managed to cram 18 repetitions of the personal pronoun and its derivatives into a mere 5 verses*. (That's a strike rate of better than one me-me, I-mine or my-my in every 7 words!) And this just moments before Jonah was famously swallowed by the whale. A pretty sure way to shut the whinger up; and very likely the point of that illustrative story.

Here’s an example: Last week I made a stellar discovery: something that has changed the topography of my world. Having made a trip to town with B3, I was weighing up the alternatives of charging home again the same way, or ringing for a wheel chair taxi. Glancing up from my inspection of B3's battery meter, which is at the core of this decision, I happened to see a public bus pull into the kerb a short distance away. As they stop, these modern buses exhale deeply and with a sigh the whole front of the bus lowers itself towards the kerb for the convenience of its passengers. I rolled across for a closer inspection, and the driver happily demonstrated the ramp that hinges neatly up out of the floor and onto the curb. So began a terrific new chapter in the annals of my mobility! It's brilliant! It's a sheer delight to be at large once more after weeks of relative confinement. Every trip has strategic appeal: there are timetables to consider, routes to peruse and alternatives to weigh. Bussing has all the tactical challenge of sailing days in our youth, racing Manly Juniors on the hectic waters of Sydney Harbour – except that power doesn’t seem obliged to give way to battery. I can get to our church office on a Tuesday for a tenth of the cost of the wheelchair taxi. I can go just about anywhere I want and into every shopping centre or leafy park in the city. I feel like a teenager learning to drive (and don’t I sound like one?) And I feel convicted of that same legendary, narrow, adolescent self-absorption. My life has the feel of a cyclone, a storm spinning madly inwards, forcing me into an eye (or an I!) of idle egocentricity.

This is the nub: the further down the path of incapacity one travels, the more pre-occupied with self one becomes. It is unremitting and cruel. For example, my daily routine now consumes much of the capacity I once endeavoured to offer others. A shower is an hour long campaign, carefully executed in successive stages of plan, attack and recover. I hate the domestic drama that is unfolding before my eyes: as I take longer and longer to attend to my own requirements and contribute steadily less to my household, my Favourite Wife has to pick up ever more of the responsibility. She has gone back to work to earn our living, she does all the driving, all the shopping, all the cooking, and virtually all of everything else. Fortunately for us she happens to be extraordinary! We have a gorgeous nine year old daughter with Down syndrome who has always happily consumed every scrap of available energy and attention from both her patents; but more and more often I simply watch the taxing dramas play out. The storm is so unfair, so distorting, and so relentless.

I struggle to see my way through this dilemma. Self-absorbtion seems to me to be an awful destination, but how is it to be avoided?


(*Jonah 2:2-6)
 

peter57

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Joined
Jun 21, 2009
Messages
429
Reason
DX UMND/PLS
Diagnosis
10/2008
Country
AUS
State
S.A.
Yes it is the simple things that I miss too, like the 5 min shower.
I am pleased you discovered the bus though. Unfortunately for me when i cannot walk any more i will have to rely on others totally as I live in the country, no such buses here for us.:sad:

cheers
Peter
 

indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,784
Reason
Lost a loved one
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07/2009
Country
oz
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oz
arkallen and Peter, just what I needed to see and "hear" this morning. Tussen Takk brave souls. I honor you and your insight. Prairie hugs across the big blue ocean straight to you. Kay Marie
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
Roderick, I sent a message after getting this in my "inbox" this morning, then wondered if you knew which "message" I referred to, so seeing it again here is wonderful... but, to expand on Milton (now that's presumptuous, I realize), as others rise to the need to help you and your wife, there is a lot of opportunity to show your trust and peace given by the Lord. And when speech is gone, prayer remains. It's unavoidable to have to spend a lot of time figuring out how to deal with this disease, especially given the nature of the beast to always continue to take parts of us away. Yet those who come to help also share more deeply their own distresses and of course, intercessory prayer results. That's been my experience so far. Do accept help when offered...
Ann
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
Self-awareness is a necessity for pALS both in dealing with physical failings and the emotional stress placed on all involved. Self-absorption on the other hand is the preoccupation with self to the exclusion of everything else. Avoiding that in your case I think is simple. Look in your wife's eyes and ask yourself what matters ;)
 

mare

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Jun 5, 2008
Messages
761
Reason
Lost a loved one
Country
US
State
PA
Jeff-

(speaking as a wife) Please show your post to your wife.
It is beautiful!
 

arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
266
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
Yes, great thoughts Ann!
 

arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
266
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
Jeff,

That's wonderful! Self awareness / self absorbtion. I love the way you have opened up the difference. And I will surely take your advice.

Thank you.
 

Pidge

Active member
Joined
Sep 12, 2009
Messages
99
Diagnosis
08/2009
Country
US
State
Ohio
Great thread i've been thinking alot latley how I have never been one to complain alot but since my son has been DX & I have had the greatest opportunity to meet all of you it has robbed me of my ability to complain at all. I break a nail or have a bad hair day egads I can't complain my son has ALS & many other people I have come to love I have not even met . I drop the same damn thing over & over again I can't complain I know my son drops & fumbles all day long & never groins he just keeps trying. God Bless all of you & your unique ways to over come, never give up it is a great acomplishment when you do conqueor the obsticles set in your path.
 
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