Believe it or not, those words (slightly paraphrased) were said to me by a counsellor I was seeing. That was five years ago. The reason I was seeing the counsellor is irrelevant to this story suffice to say that it was related to a matter that seriously affected my relationship to those nearest and dearest to me.
I had just completed describing my everyday life to her when she uttered those words. It wasn’t something she blurted out, but was a slow and careful statement made after a moment of silence. I wasn’t shocked by her statement, but I remember thinking that it was was an inappropriate comment for a counsellor to say to a client. I didn’t understand then, and still don’t understand now, why anyone in my situation would want to contemplate suicide, but I when I have discussed the inappropriateness of her comment with others, many have tended to agree with her.
So what is it about my life that others think should make it unbearable?
For as long as I can remember I have had headaches. I’ve also had periods when I become totally disoriented and confused. There would be occasions when, for example coming home from school, I would discover I was somewhere I didn’t recognise and didn’t have a clue how I got there. There would be times when I couldn’t comprehend what people were saying even though I understood each of the words they used. Sometimes I would forget the meaning of specific words. Sometimes a word I wanted to utter was replaced by something totally different. Sometime my sensitivity to light and sound became unbearable. Often these cognitive problems coincided with the headaches, but not always. Not knowing any different, I thought this was normal.
As I entered puberty, the headaches become more frequent and often were accompanied by bouts of nausea and vomiting. These were diagnosed as migraines. These migraine attacks would occur somewhere between once every few days to once or twice a month. I was still plagued by the cognitive problems but less frequently than the headaches, and not realising that they were not normal, I never mentioned them to anyone. I was assured that I would “grow out” of the migraines, and by the time I was twenty, the migraine attacks were down to about one every two or three weeks.
This state of affairs remained until I was in my thirties when the migraines slowly increased in frequency. It was also beginning to dawn on me that there were significant events that I had no memory of, and couldn’t be explained away as forgetfulness. There were times were I felt a distinct disconnect between my mind and my body – almost like I was simply an observer of another being. I also noticed that sometimes I would forget how to do simple things such as tying my shoelaces, or, if I did remember how, I couldn’t get my fingers to cooperate. I became sufficiently concerned about these issues that I finally mentioned it to my doctor when I turned forty.
A series of tests revealed nothing untoward, and I suspect the medical profession thought I was making it all up. I almost convinced myself that it was “all in my mind” and perhaps I should seek the help of a psychiatrist. I didn’t. The migraines continued to increase in frequency and intensity through my forties, as did the cognitive problems. I found I often missed door openings and collided painfully with the door frame or find that the fifteen minute drive from work to home would take an hour and a half.
I had just turned fifty when it was decided I could no longer work full time, and I had my first EEG and brain MRI. The EEG was “inconclusive”. The MRI revealed an unusual occurrence of white matter, but was “considered not to be relevant” to my symptoms. Shortly after this I was picked up by the police as I was apparently staggering around town as if I was intoxicated. It seems they thought I might be having a stroke and when I came to I found myself in the unpleasant noisy and brightly lit environment of the Emergency department of a nearby hospital.
This was the first of many occurrences where I have ended up in hospital with stroke-like symptoms. Despite multiple MRIs, EEGs, CT scans, x-rays, blood tests, spinal taps and psychiatric examinations, no definitive explanation has been found. The closest they have come to a diagnosis is “it’s possibly atypical migraine”.
At sixty I was diagnosed as being on the autism spectrum. This possibly gives an explanation as to why I don’t feel as distressed about my condition as others think I should be. And while I can intellectualise why perhaps others might find my life is distressing, I just can’t feel it.
Now I’m in my mid-sixties, and my headaches, cognitive skills and motor skills fluctuate on a daily basis. Some days I’m almost in a vegetative state, on other days I feel like I’m a kid again. Some days I worry about the stress I undoubtedly impose on my family.
But on the whole, I am happy. I can still admire the beauty of a sunrise, experience the thrill of a thunderstorm, delight in the squeals of joy from small children. When I’m able, I can still enjoy taking part in a deep philosophical discussion, or feeling the breeze on my face on a long walk.
Yes, life is good.