Autumn 2011 #3
A conversation with my Neurologist this week took an unwelcome turn.
“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.