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arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
268
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
I'm campaigning for a 'Wall of Fame' at the Respiratory Clinic; with top billing in recognition of my own truly inspiring lung capacity. Just a few days before last week's railway excursion into Unknowing, I attended a regular appointment with the Respiratory Physician. Actually, 'attend' is too plain a word by far: my quarterly clinic appearance is a tournament event! It's a contact sport, a competitive opportunity to crack my own P.B. on the spirometry machine. And crack it I did! I'm chasing the Holy Grail of 6 litres lung capacity; and this time I got to 5.85, a significant gain on the last round. It should have been a Glory Day, toasted with Champaign, acclaimed in the sports pages, lauded on local radio. But one small detail of my post-spirometry consultation with the Professor has deeply rattled my equilibrium. In the midst of my triumph I mentioned that I don't seem to sleep too well any more; and so I'm booked for an overnight 'sleep study' in a few weeks. (Though one would have thought the chances of a sound night’s sleep in a hospital bed would be slight in the extreme!) Apparently neurological deterioration in lung function shows up first at night, where the prone breather must battle gravity with each breath. This, it would seem, is what I’ve probably begun to do.

In every breath we take there is a molecule of Oxygen that was exhaled by Napoléon. In that same lungfull of what we euphemistically call 'fresh air' there will also almost certainly be molecules that were inhaled by every single person in history that preceded the great Napoléon: Joan of Arc, the whole suite of Caesars, Aristotle, even Christ. I learned this at University, and as I recall it is true because of the volume of the earth's atmosphere, the theory of probability, and the discoveries of a certain Avogadro*, an Italian Courtier scientist. It's a rather lovely fact; at one level a curious novelty, at another a resonant reminder of the ephemeral life we share together on this planet. Those who breathed these shared molecules do so no longer; they have had their turn, and ours too shall soon pass by. Perhaps nothing so evocatively captures the essence or the precariousness of life as a single breath. It is, as they say, all that separates us from eternity.

I returned from my Melbourne experience last week with a heavy heart. Usually – and I’ve had ample opportunity to observe this – I recover from recurring bouts of Clinical Non-Diagnosis** after about 48 hours. The sense of bewildered disorientation passes soon enough. But this time, for days on end, I have been unable to laugh much. My best smiles have been vaguely dishonest, and the pressure of tears lurking somewhere behind my eyes has been ever present. It took some direct and helpful questioning from our good GP to draw out the suppressed truth: the Melbourne clinic's tight-lipped silence wasn't the issue at all; I just don’t want to run out of breath. With 6 litre lungs and 3 minute breath-holding antics I honestly thought that I had this one in the bag. But it seems not; suddenly I feel like I’m breathing in a bag. Of course, in one way all this is no surprise: there must, after all, be some reason the lung doctor calls me back every 12 weeks. I knew well enough what might lie ahead, but there is a wide gulf between knowledge and experience. When the body tells you plainly what you thought your mind had known, the impact just might take your breath away.

While staying in Melbourne, my wonderful Cousins introduced me to a remarkable piece of music. In Gavin Bryars’ “Jesus Blood Never Failed Me Yet” the feeble, evocative voice of a homeless Londoner sings a few short phrases over, and over, and over; a sound bite that loops continually for more than a full hour. Strings, orchestral harmony, a tolling bell, a choir, a pipe organ and finally a gravelly soloist’s voice all combine with the old man of the streets in a celebration of humanity. The rhythm of the music revolving around and around these simple words is mesmerizingly breath-like, declaring at an all but subconscious level the essence of life, of frailty, of resilience, of faith, and of hope. It’s becoming something of an anthem in our home; and it does us good!

"And the Lord God formed man of the dust of the ground, and breathed into him the breath of life; and man became a living soul". The wonder is all that a single breath can hold. Oxygen, health, a fragrant memory, a word of love, a gift of affirmation, inspiration, exhaltation, hope, the moment, life itself!

Rejoice!

_____________________________________________________________________

*Lorenzo Romano Amedeo Carlo Bernadette Avogadro di Quaregna e Cerreto ! (1776 – 1856).

** Clinical Non-Diagnosis has now become the primary symptom of my non-condition. A typical attack starts with the sudden onset of a clinic visit, followed by some poking and prodding. Soon enough a little professional brow-furrowing will develop, and ultimately the episode becomes full blown failure to diagnose!
 
So, what you are saying is that there are environmental factors to Clinical Non-Diagnosis (CND). My sister has reported symptoms resembling Tourette's Syndome after clinic visits, except her hiccup like utterances are limited to "WTF?" She's also exhibiting some paranoia, claiming that people in white coats aren't who they appear to be.
 
CND! That made me laugh! Thanks.
Good to meet you here; I hope your sister finds herself strong, and manages the white coat brigade valliantly. Some of them are wonderful people - most of them probably!
 
YouTube- Gavin Bryars (feat. Tom Waits) - Jesus' Blood Never Failed Me Yet (Part 5) A "piece" of Jesus' Blood Never Failed Me Yet for anyone interested.

I confess, I cannot wait for the Sunday edition of Roderick's work to hit the forum and have it delivered by email early Sunday morning before I awaken. I get to read it and think. I've already told you what I think, Roderick, so this is a p.s...

Your struggles and your victories over them are part and parcel of what we all are experiencing. When you feel perhaps as though you've "failed", it is often used greatly for other's needs.

I had what I thought was an enviable fvc of 135% a few months after my diagnosis. It was actually a measure of how hard I had to breathe to move (no wheelchair at that point). I wanted also to say I do, in fact, know that insidious feeling well, that while it's still unproven, deep inside you know the disease has moved into new territory. Denial is the only alternative, and that doesn't help.

KBO!
Ann
 
I love the passage in Genesis where it records that God breathed into man the breath of life. I picture an almighty God getting intimately close to a man-shaped clump of clay, so close as to have His mouth to the nose of the man. I can only imagine the scene when the clay, after receiving that breath, came to life. That had to be some jolt!
 
Thank you again Roderick. You have blown me off my computer chair. The imagery of each breath at this instant is mind blowing. Who else has shared it? You have made this wet horrid day into something special again.

Thanks Mate
Aly
 
Thank you again Roderick. You have blown me off my computer chair. The imagery of each breath at this instant is mind blowing. Who else has shared it? You have made this wet horrid day into something special again.

Thanks Mate
Aly

It's a grey and wet day here too; especially for the 6th day of Spring! It's a joy to have brightened your day Aly. Breathe well!
KBO!
 
I love the passage in Genesis where it records that God breathed into man the breath of life. I picture an almighty God getting intimately close to a man-shaped clump of clay, so close as to have His mouth to the nose of the man. I can only imagine the scene when the clay, after receiving that breath, came to life. That had to be some jolt!

A wonderful dichotomy of the human and the Divine.
 
Ann,

Isnt it difficult to be realistic about what you think might be happening to you, and yet not jump the gun, panic, overstep the line. I recently had to eat a little humble pie with my speech therapist after having immagined that I'd be unable to speak in about two months time. So silly! But at the time I was quite convinced. Im trying to be prepared for the future, and yet remain at least a little bit calm and 'normal'.
 
Roderick,

It's such a fine line. I'm presently in one of those crossroads. The ALS Clinic called me this morning to say insurance will cover only one more visit this year (I'm scheduled for next week to go), and my judgment call is based on my "best guess" thoughts on what my speech and arms are doing. So, I don't want to "jump the gun" but nor do I want to wait until I'm too far gone to begin a sensible plan.

We are in the hands of the Lord. He keeps telling me to trust Him with all these details. When I do get rattled, He reminds me that I'm not doing my part (trusting). "Be Still and know that I AM God" is so simple intellectually but so foreign to our common sense.

Praying for you,
Ann
 
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