I have gradually realised that my experiences also belong within a professional discourse. I have few qualifications to participate actively in the ongoing debate, but it is encouraging to view personal experiences in light of a professional discussion that in fact applies to me directly.
In the book Descartes' Error by Antonio Damasio from 1994, the body constitutes the fundamental reference for understanding the human. This body interacts with its environment as an ensemble, and the physiological operations that we call the mind are derived from this structural and functional ensemble, not only from the brain, Damasio claims (1). This may immediately sound quite self-evident, but it is not. Damasio points out that the brain's most valuable product, the mind, has never played a leading role in the study of brain diseases, i.e. neurology.
My small forays into this matter have been important to me on a personal level. They underpin the certainty that much remains unexplored in the interaction between the environment, brain activity and the rest of the body that may have a bearing also on the manifestations of my own disease. Now, I believe that my ailing nerve cells are not only diseased. They are part of a dialogue with the entire body and the life conditions to which I am subjected. And even though this dialogue will not restore my health, a dialogue of sorts nevertheless continues inside me between my nerve cells, those that are healthy as well as ailing, and other forces in my body, in both my brain and my muscles. All these nerve cells are in direct contact with my mind as well as my surroundings.
This perspective differs from the one I have encountered in the health services, where all the attention was directed to the dead motor neurons.
My life is not exactly dead and empty. In many ways, I can say that during these last years I have lived a richer and deeper life than ever before. Obviously, this does not imply that I am happy about my fate, far from it. However, deep, deep within me there is a glimmer of hope that someday, my fate will take a different turn in a direction other than what the prophecies indicate. Until then, I struggle on and wrestle with the challenges that constantly turn up in new guises. All told, however, these endeavours create an existence which is bearable. This is quite different from sitting there waiting for what lies ahead to catch up with me, which is just intolerable.