Not really. I mean when I can walk, I walk. I just can't always do it. I don't really see how physio can improve this drastically. I still do the exercises though. The psychologist is nice to talk to but I don't see any improvement on that level. What am I supposed to be feeling and seeing?
(Sighs) Joseph, if you don't believe the diagnosis I can't help you, we can't help you...
I do the exercises. I always participate. It's just that I'm not getting better. It's an effort to get to all these appointments but I still do it... But I don't think I've had enough tests to consign these symptoms to a single psychological origin. The diagnosis isn't helping me get better. It's making me miserable. I don't see any literature that describes Functional Disorder as having exertion intolerance as it's main feature.
You are a classic, textbook case of Functional disorder.
But I haven't had any tests for other things, like Chronic Fatigue Syndrome for example.
You've had lots of tests in the past.
No I haven't!
You've had multiple EEG's and EMG's...
No I haven't! I had one EMG in 2013 and an EEG before any seizure symptoms were happening. I'm not done searching yet.
Well, this is the therapy you need now. I'm not going to order any more tests. People get better from this. You have it, look at you. You are in a wheelchair. Great improvements can be made. The evidence is there to show that people who actively participate actually get better. But you don't believe in the diagnosis.
No, I don't. I'm not happy with the diagnosis. I don't trust it.
And that makes all the difference. If you don't believe in us, we can't help you. It's not your fault, some people just can't get their head around it. It might be your science mind that demands a more physical answer...
I agree that you can't help me. I understand what you are saying. I see how passionate you are and I feel like I am disappointing you.
It's fine, I'm not offended.
I appreciate your efforts to raise the profile because what is said about it is pretty awful.
Yes. I'm appalled by the attitudes towards it and I'm doing my best in this clinic to help people and to get rid of the stigma.
... and so it went on. He said a lot about FND and the mind being more plastic than was ever known. He objected to 'psychogenic' being used to describe FND origins but emphasised that psychology can and does help to cure it. It is obvious that most medical types have much less understanding than he. He knew infinitely more than me. He talked about clinical trials where FND patients have had demonstrated differences in their neurological pathways so that what neural impulse they started with ends up in a different interpretation along the pathway than what it did with normal people and people faking the complaint. I began to get a glimpse of what "software problem" means. He seemed so perfectly right... And yet... I could not find in my soul an acceptance that we were walking the same path. The thought of caving in had me feeling deeply troubled.
The 'abnormal' EEG he flicked off as 'nothing'. I expected as much, not that I'm not disappointed in its broken promise of solid evidence.
He can't help me because he doesn't believe in my search for another answer any more than I believe in his assurances, despite my 'textbook presentation'. I'm apparently not improving because I don't 'believe'? I'm sure a Panadol would work even if I were sceptical about its efficacy. Does it work better if I believe it will? There are a lot of deathly ill people out there - if only they believed more in their doctors.
Beyond doing the work, what else is there? Some sort of nebulous positive thinking determination that is the steam I need to get me over this disability? Steely grit? Going the extra mile when you feel like you are going to drop from exhaustion? Some people get better doing half what they are supposed to. Some don't improve, whatever their attitude. Maybe it’s because they are just too sick or maybe it's because they don’t have the disorder. To entertain the idea that a person must have the 'right' emotions in order for a therapy to work, is to delve where a medico should not go. Even if FND can be cured with psychology, should there not be progress regardless of attitude? Sitting down and being present for 5 minutes a day should work to ground a person whether they believe it will cure their FND or not. You can't say it didn't work because the patient didn't believe in the diagnosis enough. That's not fair. Show me the regime, I'll do it and we'll see if it works. If it doesn't, it's not the right treatment. Progress has been made, a null hypothesis accepted. Back to the books. That's science. Otherwise it’s no different to all other forms of faith healing.
My neurologist’s passion is appealing but not convincing. It boils down to how much of this can I swallow with any integrity – at this point in my knowledge of it, anyway. How much will I respect myself in the morning if I lie with this over dressed, stinky bedfellow?
I couldn't express this, though. I just sat there in my wheelchair feeling like a deluded hypochondriac. In the face of his knowledge and passion I felt like an ignorant heel to be pooh-poohing his life’s work. He was so sincere, could there be a chance that I'm wrong? Could just a bit more effort, a bit more faith... I just had to sit there stewing in my discomfort knowing to reneg would be to pull out the bottom Jenga piece - shakily.
We both agreed to part ways; for now. with the invitation to come back when I have come to my senses. Deep down I, faithless one, wanted this outcome. I wanted this opportunity to explore new leads. I let him tell me I was in a wheelchair because of FND if only I would believe.
I think the most important thing about this experience is that my integrity survived. I have a sense of having done the right thing without knowing if I am right. I will have to wear the sense of ignorance, the fear of what being wrong will mean, the arrogance of wanting to be right. Had I caved, even if he is right, I would have felt like a sell-out. As it is, I feel... pretty damn good.