Spring 2010 #4
Of all the things I’ve lost, I miss my mind the most.
This week a letter arrived from the Neurologist who last month uttered the incongruous phrase, “It’s too soon to know”. Coming on the tail end of a taxing (but exhilarating!) 30 hour sojourn his letter sucked my remaining breath away. The previous day began with a pair of busses to the train station – then a train trip a couple of hours north – visit our favourite florist (where our daughter used to work) – meet another daughter’s orthodontist – coffee with our son – dinner with a friend – find the hospital in the dark with B4 – attend Sleep(less) Clinic – donate a bed time arterial blood sample (there are any number of less painful ways to shed a little blood) – sleep(less) night – donate a wake up arterial blood sample (there are any number of less painful ways to wake up also) – listen to Dr Blood claiming he had already seen the video of my sleep(less) night on YouTube, then “I wish you well with your paranoia” as he waved good bye – some shopping in the morning – coffee with another friend – back to the florist to pick up a gift for my Favourite Wife – coffee with yet another daughter – train back south – collect FW’s birthday present – and a couple of busses home! Phew.
The 31st hour, though, was the killer. It was a fortunate thing that I was sitting down (on B4) when I opened the letter waiting on my desk. This most recent specialist, like the neurology team that I wrote about four months ago in D-Day, believes this to be a “functional neurological disorder”. Definition: Functional neurological symptoms are somatic symptoms that superficially resemble those of organic disorders of the nervous system but for which no physical explanation can be found *. Bluntly put: psychosomatic, all in the mind.
It is no small thing to write about this, but honesty insists that I try. I feel vulnerable and embarrassed. Although local medicos quickly dismissed this theory several months ago, this second opinion forces me to look again; but what to do with what I see? I might indignantly scoff at his view; after all, his conclusion is based partly on the fact that I can walk reasonably well backwards but hardly at all forwards (which, incidentally, I didn’t actually know until he alerted me to it. It has proved a very useful technique already in my shed!) But outright denial could be self-deception, and of course it entails resignation to a serious physical condition. Surely the possibility of treatment should be welcome news? But if I embrace this new diagnosis I feel I am surrendering the last strength in which I felt secure: my mind.
I find the idea distressing in the extreme. Unknowing is no longer a matter of not knowing what the specific problem is; now there may be no problem at all, at least not in the physical realm. Could I really be that distorted in my thinking? Could I honestly have sabotaged a career, thrown away our home, scattered my family, sent my Wife (the Favourite!) out to work, lost my licence, confined myself to a wheelchair, etc etc etc, all via some deeply subconscious trauma? Is it possible that something malevolent, something about which I know nothing whatsoever, something quite invisible even to the psychiatrists that I twice encountered, could actually wreak havoc beneath the conscious level of my being? It seems frankly demonic, and I wonder how one could ever be free of its clutches.
Without sounding too self-assured, I think I’m reasonably well adjusted. I guess it’s ultimately for others to say, but I don’t sense in myself a hidden neurosis, deep seated anxiety, depression, or any of the other stresses and distortions from which a functional disorder is thought to stem **. I know little about medicine; neither am I a psychologist or qualified counsellor; but I have spent much of my career helping people deal with life’s great challenges. And so cautiously, respectfully, after taking several days to digest this news, I have decided that I disagree. I think the good doctor – whom I must say I like – is wrong.
I feel abandoned by the medical world. Indeed one support organization (who, disturbingly, knew about this doctor’s opinion a week before I did) have already indicated that I am probably now ineligible for their assistance. Nonetheless, I will listen to every specialist, I will take the advice offered, I will not let a callous of pride or fear insulate me from what I may need to hear. If this two year journey turns out to be a bizarre sidetrack through a psychological wasteland … then so be it. But I don’t think so, I really don’t!
Thankfully, though, the many competing voices around me seem quiet, transient, even fickle in comparison to the voice within me. (Ahhh, that’s tipped it, hasn’t it? Now you know I’m crazy!) There is absolutely nothing that can compare with a sense of peace, no matter what the circumstance. Perhaps providentially it was my turn to preach in our local church on Sunday. Preceding my message was a video segment from a well known speaker who dramatically illustrated the predicament of being pressed between the sleepiness of men and the silence of God. This is Christ’s predicament in the Garden of Gethsemane when his companions abandon him and heaven speaks to him only of the cross. There are seasons when we have neither the reassurance of men nor the explanation of the Almighty, and we must walk alone. These are seasons of ultimate pressure, but they can be seasons of the most rewarding trust.
* The Academy of Psychosomatic Medicine http://psy.psychiatryonline.org/cgi/content/full/48/3/230
** As a rather technical footnote, the following quote from the same source indicates the causative pressures that are thought to perpetuate functional disorder: “The identified potentially perpetuating factors were grouped into seven domains: 1) bereavement (significant bereavements that had occurred since the onset of symptoms); 2) health issues (generalized anxiety about health and symptom-focused anxiety [hypochondriasis], as well as continuing physical problems); 3) financial /social gain (referring to claims for compensation or financial benefits related to the target symptoms and illness-identity, with entrenched dependency); 4) affective disorder (depression and anxiety other than health anxiety); 5) sexual trauma (any sexual trauma, as defined above, occurring since symptom onset); 6) social pressures (including life pressures and caring responsibilities, where these were considered to be having a severe impact); continuing family dysfunction, and social isolation; and 7) other (any other situations causing distress, such as the illness of a close relative, financial problems, family estrangement, traumatic experiences after the onset of symptoms, or concerns about health of family members)”