An Hiatus

Several Sunday afternoons spent at the keyboard in recent weeks have stalled at the very same sticking-point. No matter which story I begin to relate it always leads back another which I do not wish to tell. Perhaps if I tell the nasty story I will have more success recording the happier experiences of late.

A few weeks ago a medical test returned a positive result.
Which is unheard of!
Innumerable tests of infinite variety have rarely pushed the needle far from normal, which is why almost five years on there is still no diagnosis for my problems.  The test that finally returned a result was meant to have been conducted by a Melbourne Respiratory Service, however they declined to admit me to their programme, and sent me back to the Professor in Wagga who had ordered the test.  The GP raised her eyebrow and remarked that it seemed very rude – not to say irregular – of them to refuse a Professor’s request. Although they offered no reason for their decision I’m quite sure I know why:
…they think I’m mad.

I went to Melbourne in February, with the referral from my Wagga professor requesting a ‘sleep study’, which is a common enough thing.  An admission interview was held in an odd sort of room which was more of an alcove off a busy corridor than a room in its own right.  The doctor I was speaking with was youngish, pleasant, and interested.  Having spent some time reading and quizzing she left me alone for a few minutes and was replaced by a more senior specialist; a woman who I can only think of as brash and self assured.  With very little preamble she asked me if I was prepared to consider that I had a psychiatric problem.

Having, so I thought, seen this beast finally sheath its claws and skulk away almost two years ago I had let my guard down, and her words were an auditory assault for which I was very unprepared.  I reigned in the emotion that threatened to overwhelm, and tried to be objective as I explained that this suggestion had indeed been made in the past (but I think she already knew that); and that I had done my best at the time to consider it and search carefully and for any merit in the idea. I told her that I had completed a thorough Neuropsychology profile and that I been assessed by three separate psychiatrists, and briefly interviewed by the Austin Hospital Head of Psychology; none of whom found any cause for concern.  I can still hear her commanding voice, word for word:

“Well, I have been doing this for 25 years and they are wrong!  We need to tell a psychiatrist that YOU HAVE conversion disorder, now FIX IT!

I don’t remember quite how it happened, but suddenly she was dragging me along the busy corridor by one arm, kindly allowing me with one walking stick, to prove (I suppose) that I didn’t have a problem at all.

Then I was passed back to the younger doctor who seemed rather apologetic in telling me that there was nothing they could do for me.  I was – for the second time – deemed ineligible for assistance through the Victorian Respiratory Support Service; and that was that.

Thankfully I had planned to visit my cousin later that evening, so I was just a train stop or two away from family, from refuge amongst safe people.

It was, and still is, horrible.  With the benefit of a few days to consider what had transpired I could see the outlandish aspects to the specialist’s verdict; most obviously the fact that she had reached her somewhat adamant diagnosis before having even met me. Then there is her evident disregard for other members of her profession. Nonetheless, these people have considerable power over their patients, and I have an acquired trepidation in all my dealings with them. I’m not sure that I have shaken off whatever it was that happened in Melbourne that day; even after having the ‘sleep study’ in Wagga that yielded the positive result which might hopefully confound my Melbourne nemesis.    I find myself less sure, less able to write or say or even decide exactly what I think.  But that may not be the nasty specialist’s fault: there is something vitally unsettling about relying on a machine to breathe, it feels sometimes as though a tiny wisp of my own soul disappears back up the springy tube with every assisted breath.

The good thing was that I had a wonderful home and family to return to by train the following day; a place where life can be lived well enough regardless of the doctors and their opinions, a home in Paradise where the good times keep rolling on!  And more on that anon.


5 thoughts on “An Hiatus

  1. James (Jim) Bolden

    Dear Roderick
    I am very sorry to hear that even after two years this error in you dx is still haunting you. I remember when you first shared that and was, and still am amazed, at how closed and narrow minded the sciences can be. You are in my prayers.

    Also, wanted you to know how much your blog meant to my wife. I never could get her to interact with the ALS chat site but one of the best things I did for her was to introduce her to your blog. She eagerly looked each Sunday for your post and was always very vocal about missing what she obviously considered a highlight in her life if for some reason you did not post; followed by concern at why you might not have written. Your are living it so I don’t have to tell you that when when so much is taken away ( and ALS takes sooooo much) every little joy to savored. Thank you for bringing joy to my wife during what was the most difficult days of her life. Please keep posting for all of us who are inspired and entertained by your writing.

    On April 5, 2013 while sitting looking out our big bay window, above which she had one of our daughters stencil the phrase “Every day hold a possibility of a miracle”, Serena finally received hers as the LORD very quickly and quietly call her to his side. Praise be the name of the LORD.

    God Bless and keep you.

  2. Julie C

    I am sorry to hear your news Rod, but glad to hear something, and rejoicing in the Paradise you have and the Father in Heaven who holds you in his hands.

  3. Sonia Pavey

    Rod, thanks for your honesty. I will keep you in prayer. Take care and keep enjoying the safety, reassurance and refuge in God and your family. Sonia.

  4. Nadia Humphries

    So wrong and so patronising. So wonderful God has provided you with wonderful family and friends that love you, except you and know the trails and challenges you face everyday!

  5. Pat Thrift

    God is compassionate dear Rod and the bruised reed he doesn’t break and the smoking flax he doesn’t quench.not a sparrow falls to the ground that He doesn’t see or care and you are of more value then a sparrow. You are His precious child and every tear you shed He sees and cares. That is the important thing.Who knows why this

    trial is besetting you but one thing I do know is that He is with you in the midst AND YOU WILLPREVAIL.You will look at your enemies and rejoice. Love you heaps

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