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arkallen

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Damocles revelled in blissfull ignorance of the warrior’s sword suspended above his head by a single strand of horse hair. Seated on the throne of Dionysius II, the flippant underling was poised to die, or perhaps to learn. King Dionysius had observed his servant’s ignorant envy of royal opulence, and proposed that they should swap places. Damocles jumped at the opportunity to take the throne and sample the trappings of power; unaware of the responsibilities and threats a King must daily face. But a single glance upwards during his night of feasting brought him begging for release from the terror of uncertainty.

This week marks the second anniversary of my pursuit of a medical answer to a growing list of questions, and to date disagreement and indecision reign. This is an essay on the pain of uncertainty. If you have read Rejoice! in the past you will know this is hardly a new theme....

Above my own head hang a pair of blades, weapons whose edge and tenuous tethering are too often on my mind. One sword is the often mentioned phrase Motor Neurone Disease. When will this blade be either drawn or permanently sheathed? The second steel hangs in the form of letters from a Neurologist who I saw for one brief hour three months ago. In 'All in the Mind' I wrote about the personal letter I received, containing his opinion that my condition is 'functional', or psychosomatic. What I failed to appreciate was that he had also written to the various other doctors at greater length, stating his view in more assertive terms than the cautious speculation other specialists prefer. His opinion has rippled through the ranks of therapists and service providers, and I recently obtained a copy of this second letter.

It’s a tough read. Added to his observation about my curious skill in walking backwards (perhaps I need nothing more than a mirror after all?) are more troubling remarks, such as his indictment that I chose to use a wheelchair of my own accord, noting that “patients generally resist this as long as possible”. It seems such a misreading of my story, as if I hadn’t squeezed the last drop of support from a plethora of sticks, crutches and frames for a full year beforehand. And he fails to take account of a most obvious fact: with no diagnosis there has been no advice from any doctor about anything. This stony silence has been the most painful experience, and without professional recommendation the transition to each new appliance has been awful. This and other comments infer that I am a hypochondriac, although he stops short of using that term. The Doctor’s letter to his colleagues ends with these words, written about me: “we will see what effect my letter has on him”. Well Sir, the effect of your letter has not been good!

But it is the stark difference between the pair of weapons dangling from the rafters that really messes with my mind! A rapier engraved ‘MND’ hanging beside a stiletto marked ‘Neurotic’. Something in me screams to reject the second: I stubbornly insist that I am not mad! Which leaves the first sword as the only choice. But who in their right mind would select an incurable diagnosis over a trip to the psychiatrist? If I claim too loudly that I am of sound mind I might just prove that I am not!

If the colourful Sword of Damocles legend could be transported from the luxury of an Ancient Greece to the arid deserts of Northern Africa the tale would make no sense at all. This is the environment the Desert Fathers would inhabit centuries later; Christian mystics for whom a parable of impending doom would have little to offer. Life is precarious in the wilderness. It is sustained by endurance or miracle alone, and the very uncertainty of existence produces faith in deep measure. The desert, far from being a place of hostile bareness, is a long-sought trove of spirituality.

Uncertainty is everywhere. We like the idea that we have things under control, but it's largely nonsense. Seasons, weekends, celebrations and the other rhythms of life provide a lattice on which we hang our plans, dreams and emotions. Routine is an odd structure: at once the substance of culture and a source of great delight; yet at the same time it is a screen, barely separating us from the shocking truth that nothing is definite. Uncertainty out of preference brings vitality to explorers, adds thrill to sport, and is the chalice of great achievement. Uncertainty as a condition, however, is less noble and somehow corrosive to the soul.

So how will we respond to the uncertainty of our lives? Some will live in fear of impending doom, always dwelling under the hanging blade. Others will recognise with gratitude the wilderness into which they have been drawn; receiving uncertainty as a gift, adopting their proper stance of humility and a holy insecurity. There is so much to learn in the desert.

Today I am celebrating a curious birthday, my 49th. An inglorious numeral, resonating with uncertainty, it is notable mainly for what it is not. Try and concentrate on 49 without letting 50 enter your thoughts. Neither here nor there, 49 could be the perfect age for a desert dweller.

Rejoice!
 

abbas child

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Roderick,

I hear you. Uncertainty in the question of MND or hypochondria is a madness of its own. But seeing that you have chosen to be a "desert dweller" during this time (and age!) tells us you are choosing to receive it--in your words--as a gift. That choice is an accomplishment.

Happy Birthday!
 

arkallen

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Thank goodness Ann!
I'm so relieved, your brief summary is so concise! I was worried that my rambling was too obscure this time. The metaphor of the wilderness (although it's more than a metaphor) is so complete I feel.

It was a superb birthday thank you. Karen and I saw a live show at the theater on Friday night, brilliant!, had some friends here on Saturday and a few of our children came down yesterday for church and lunch. I was rostered to speak at church also which was rather good, and they had a cake etc etc. Beautiful weekend.
 

abbas child

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I'm very glad your birthday was special! We're both "desert dwellers", Roderick, although I haven't read a lot of the writings of that time and place. This world is a tightrope we are on. The hands beneath are gracious.

Best Wishes!
Ann
 

minnesota

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So clearly written, Roderick, by a man whose mere ability to capture the sights, sounds, touch and occas. smell of ailments that are so unique to each person and yet overlapping in the depth of there presence tells me that YOU do understand, YOU do have the keen abilities to write your thoughts and feelings, YOU are the most sane person! YOU have given us the priviledge of walking directly next to you through the struggles of the unknown, YOU are an excellent servant of God in your strong reliance on Him, in this desert place. We are here and you are amazing. Thank you for writing. Happy Birthday!
 

Lavender Lady

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Roderick, Happy Birthday! I am glad you were living and enjoying life this weekend. We need to be victorious! It isn't over till He says it's over
 

laurel

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Roderick I suspect that your ability to observe the world in such detail and with such clarity probably applies to you having an extraordinary ability to zero in on what is happening to your body. That insight likely has that neurologist feeling threatened and challenged because subjective symptoms don't always match up with objective observations. I am a retired nurse and for 25 years worked in emergency psychiatry and I describe the medical system to my friends as "an old boys network" and a "closed shop". Inquiring minds and insightful patients often are met with hostility and suspicion. Admire them, respect them, be compliant and don't ask complicated questions if you are to be considered a good patient. I have locked horns with my husband's neurologist just because I ask in depth questions and expect an answer that makes sense to us before we will agree to something. My husband's neurologist makes me feel like an interfering controlling person because I advocate for my husband when in real life I am rather quiet and undemanding. I get the evil eye and long stare each time we go in. It's unpleasant and that is what the neurologist intends it to be as she wants me to back off. I think that each of the doctors that you see should have copies of "The Desert of Uncertainty" as it is poignant and honest and will make the neurologist in question appear vindictive with questionable motives.
Laurel
 

Northern Dancer

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I completely agree with Laurel.

I have often noticed that patients that come across as too insightful or too accepting of their condition are often met with suspicion or are ignored by the MD's and other medical staff. Try not to be too accomodating, too trusting or too grateful. Being too polite or excusing yourself before you ask a question are both contraindicated. You will be crushed... like a newbie on the 'Do I have ALS' section. Stunned silence or self-righteous indignation seems to be what works best. No handbook exists to guide you - just trust me and my 35 years of experience and observation. And, for God's Sake, don't try to be liked.

A dear friend of mine is currently in the process of being diagnosed with either Lupus or lymphoma. He tries too hard to be relaxed and friendly and, consequently, he gets treated like ka-ka.

Lorna
 

rkyoung

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Every doctor (specifically neurologists) should have a copy of your essay. Perhaps to remind them that you did not enter their world to disorder their orderly lives and profession with a condition that defies their knowledge. Is it not a fact that all "Motor Neurone Disease" defies the knowledge every neurologist on the planet? I myself, have lost the respect for the medical profession I once had. Precisely for the self-important, arrogance of the man you describe who chooses to fail to see or hear or explore the compelling reason find yourself before him. The most compelling line in your essay for me is where you describe who would choose an incurable condition to a chat from a couch? Even the most mixed up person on the planet wouldn't choose that fate. I think I shall copy and paste your words to a document and send it to the pompous asses I met at the clinic who failed to diagnose and treat my sister. She never had a moment's relief from her pain and fear, thanks to people who walk around as if they could see, and then led her off a cliff.
 

arkallen

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Thank you Ann, Marie, Rox, Laurel, Lorna, rkyoung...

As an update: I saw the local Neurologist for a six monthly review this week. He gives no space at all to the opinion I wrote about in this essay; in fact he was rather bemused and related to me that the doctor in question had rung him up and was very emphatic in his opinion. So, I feel I can once again put that thought well and truly aside.

Laurel and Lorna; there is a lot in what you say. I feel as though you must have been in one of my consultations! Im so guilty of wanting to get on well with all the medical people. I just like all of them too much. the other odd thing is that people are forever saying to me "You look so well!" which is true enough, I do look quite fit and fine in a way.

But I have no animosity towards this doctor at all. I'm annoyed at the way it has turned out, but I think he means well. I also think that I can see why it went the way it did. When I attended the Neurological Hospital where I met him I had a list of anxieties to air. I was afraid I was loosing my voice; but because I saw him and his speech pathologist first thing in the day and because I had stayed overnight on my own and hadnt uttered a word till then my voice sounded pretty fine I immagine. I also have this nifty voice amplfier that works so well that more than one speech pathologist has been fooled. I think I presented as a happy, (too happy?), independent, well-looking, anxious person with fears that didnt match what they could observe.

So, Amen! I am content with where I am today; and if uncertainty is prolonged I find I can accept it as if it were a gift from above.

Thank you all for your ears ... it is a rare treat to be heard and understood.

KBO!
 
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