Life was simpler with MND

Autumn 2011 #3

A conversation with my Neurologist this week took an unwelcome turn.

“Any depression?”
“That surprises me.” 

I couldn’t keep my game face as I described the increasing joy I find in life; the companionship of many friends; the wonderful, robust lives of my children.  But he wasn’t buying it, and our conversation for the next forty minutes did not go well.   I have been down this track with other doctors, and it’s not pleasant.  There seems to be an expectation that depression accompanies disabling illness; as if melancholy is a more significant symptom than loss of mobility or speech.

“Who brought you here today?”
I came by bus.  Three busses actually.  I go everywhere by bus, it’s fantastic!
“Why would you do that?  Why not call a taxi?”

I was at a loss to explain my rather stubborn insistence on independence.  I showed him the numerous modifications I have made to Bugger to enable me to travel further and do more.  I could see that this didn’t sit well with him either. 

“You’ve lost a lot of voice function.”
Yes (I whispered), but that’s been happening gradually for more than two years.
“You sounded good three months ago.”

In point of fact the last thing we had discussed three months earlier was my fear of voice loss, which he thought unfounded.    I explained that when we last spoke I was relying heavily on my voice amplifier.  He didn’t know I had such a thing.  I showed him how I had built it into Bugger’s armrest, and demonstrated its amazing effect.    My Neurologist demonstrated how he too could talk in an almost inaudible voice.  I felt as humiliated as I did when another doctor did his own impression of my awkward walk, and then asked me to explain it.  

By the end of our appointment he said he could no longer rule out what he calls a “Psychogenic complaint”.  (Look it up and you will soon read more recognisable terms such as psychosomatic, hysteria, functional illness, stress disorder, factitious disorder and malingering). But this is my safe doctor! The one who’s got my back!  He made the original MND diagnosis, and just months ago he assured me that the dismissive “functional illness” tag – which he described as a “medical abyss”– would not be stuck on my file. 

“Would you consider seeing a Psychiatrist?”
I’d rather not.  Besides, I’ve already seen two.  But I will if you recommend it.
“Psychotherapy could be an option; but only if you want it.”

I remember a Rehab Therapist, caught up in the last ‘functional illness’ ruckus, who was adamant that once I was on the right psychotic drug I would start to improve. 

It was so much simpler when it was MND, I said.
“I’m sure it was.  90% of treatment is correct diagnosis”
And you can’t give me anything on paper?

Back in the day, when I had Motor Neurone Disease, the medical profession had some idea where to go.  The speech therapist would tell me what to expect, and roughly when I might expect it.  The Physio and the O.T. would suggest this or that.  Centrelink said, “Yep, sign here”.  The Social Worker pointed me to all the agencies.  The MND association said “These are our resources; we are here to help you”.  

Nowadays no one says much.    MND?  PLS?  Psycho-Something?  Non-diagnosis has muddied the water.  Therapists, not knowing what’s wrong, don’t know what to suggest.  The MND association said, “You are no longer our problem”.  And this week my Neurologist said, “Come back in nine months”.  NINE MONTHS?

I wrote about the singular agony of medical abandonment in D-Day and All in the Mind, and it would be very easy not to write about it again today.  After all, three Neurologists have now reached a similar conclusion (I rush to add that two psychiatrists and at least six other neurologists have not) and when I click “Publish” I will be inviting your opinion too.

To not be believed, to endure the inference that I am putting it on, is excruciating.  And yet I’m appreciative; even for this.  A crisis of faith looms: more than ever before I must know what I believe about myself, and in whom I will believe.  To be brought to know oneself is a great gift. 

On the way back to town (on the bus!) something strange happened.  I was feeling pretty rough, torn asunder in fact, and then I wondered: I am a Christian, so what does God say about all this?  What is his diagnosis?

 I have hidden you in the shadow of my palm. 

These words from Isaiah were in my mind instantly.  It gave me an immediate and lasting calmness; the notion that this might be hidden from men, but not from Him. Perhaps He has even blinded their eyes for His own good purpose. 



Psychogenic: originating from or caused by state of mind; having a psychological rather than a physiological cause. 

Factitious disorder:  any of various syndromes characterised by physical or psychological symptoms intentionally produced by a person and under voluntary control.


12 thoughts on “Life was simpler with MND

  1. Michael Ross

    Hi Rod, thanks again for your candour and vulnerability. I pray that God will bring the true roots of your condition to light. Praying for you whenever I think of you and it’s often these days. Know that you are complete in Christ. God bless, Michael

  2. Ann

    Roderick, There is nothing I can say to help, other than you have already been assured by the Lord that he is holding you, covering you and is with you. If not for Him, this would be one of the truly most agonizing experiences I can think of. I find it hard not to cry when reading what “they” are doing to you. But, the Lord is always working, always King. My prayers are with you.

  3. sharon

    You write so honestly and beautifully about this horrific experience Roderick. I think the word given to you in that moment is profound.You hold onto it, and do not let anyone rob you of the center that is the real and true you. I read this this morning and thought of you:

    “Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading.”

    The Edges of His Ways by Amy Carmichael

    Have you noticed this? Whatever need or trouble you are in, there is always something to help you in your Bible, if only you go on reading till you come to the word God specially has for you. I have noticed this often. Sometime the special word is in the portion you would naturally read, or in the Psalms for the Day, or in Daily Light, or maybe it somewhere else; but you must go on till you find it, for it is always somewhere. You will know it the moment you come to it, and it will rest your heart.

    Here is a tiny illustration of that: One day I was troubled and anxious about someone. That night I found these words on the page of Daily Light: I know whom I have believed, and am persuaded that He is able to keep that whicn I have committed unto Him against that day. (2 Tim:1:12) And i knew that this was His word to me.”

    Rod,You are a straightforward man of honor,anyone who knows you knows that. Stay in the inner depths of who you are, at the core of your being, and let no one convince you otherwise.

  4. All is well with me Ann!
    I wrote it as it happened, and it was traumatic, no doubt, but one soon moves past that and it has been wonderful to consider it all carefully, and see life in it’s true light. I feel it’s a cleansing experience, a real clean out of old ghosts.

  5. I must say I am often thinking of you also Monty. Your recent update was fascinating – all of your writing is fascinating! You carry yourself wonderfully in the extreem environments that have become your world. Write more…

  6. Carla

    Your Life, and those lives closest to you, is too hard to be making it up..
    How incredulous and insulting that these so called health professionals would disregard your life and say that it’s all in the mind.
    Your bravery and tenacity astounds me and your life continues to be a testament to our awesome God. He may not have brought you the healing we all so desperately seek for you, but your faith stands firm, even with a bit of humor thrown in for good measure.
    Have a week Ps Rod. You’re a great bloke!!

  7. Herbert Howell

    I remember your comments at Warburton Ranges; that when you get to heaven you want to be in charge of the power plant! It too, will possibly need modifications! Thanks for all the great, funny, challenging memories. Now you are being an inspiration again. We look forward to catching up with you later this year. In the meanwhile you are in the Lord’s hands and nothing can come to you except through Him.
    Herbert (and Lorraine)

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