Avoiding epileptics. (Article 8 of the history of my epilepsy.)

Having epilepsy used to be disgraceful and to suffer from this disease was a painful stigma. When I was small it was included among those diseases which often were solved by placing these patients in a mental hospital. It is easy to imagine that in those families where there was an epileptic, anxiety ruled. In my home, since I had been found to have epilepsy, which was repressed with the help of medication, the reaction was to conceal the existence of epilepsy. As the perfect evidence of how effective the suppression worked, I can mention that my siblings, who all were younger than I, did not know I had epilepsy until I told them, and then I had reached the age of 40 years. My parents certainly suffered anguish but concealed the fact until I opened the mental abscess when I returned from my stay in Los Angeles in 1978 and 1979.

When I was a kid, I often went to my favorite aunt Almida, who lived at Lake Vombsjön in the center of Scania, where I could be myself and saw a different side of life than the one I was served at home at Alnarp where life, although no fanaticism prevailed, always had a religious filter. Almida was a liberated, strong and for her time a very independent woman whose charisma contrasted dramatically against my mother’s. Almida liked me as my mother did, and she has meant a lot for my scores later in life. A family which was friends of Almida had a daughter who suffered from epilepsy of the serious nature and the poor girl underwent a lobotomy surgery in the 1950s as a last desperate resort, which of course failed, and she died young, before she had become 20. I met her at some point but never saw her having a seizure. I still remember the depressed unpleasant atmosphere that existed in the current home.  

The reason I remember this case, particularly well is due to the fact when I developed epilepsy myself, and I at times was haunted by anguished horror scenes of lobotomy operations but fortunately today’s information about the soul-destroying effects of lobotomy was not yet available. However, I can now posthumously rejoice in the happy ending of World War 2, which meant that the Nazi Dr. Mengele and his experiments in Germany that included everything, including epilepsy did not become my destiny. The Nazi leader Göring’s Swedish spouse suffered from epilepsy, but that kind of exception probably had a prize and was of little comfort.

In the 1990s, I participated in a TV documentary “Epilepsy is a shameful disease.” It was well intended but unfortunately is was influenced by anxiety and religiosity, and I regret that I attended. I was not yet matured enough to give the right picture of myself and how I could affect my epilepsy by therapy. However, I met a couple of times some epileptics who I have not met either before or since. I will always remember one of them, a man who over 25-30 years had been placed in a mental hospital, along with older severely mentally ill patients because his doctor had found him incurable. During a visit to The Primal Center in Venice, LA  a few years ago I met a young and good looking but inhibited young man who had epilepsy. We exchanged a few friendly phrases in a meeting, nothing more.

Apart from the mentioned persons I know no one who has epilepsy. I have met countless neurologists and come and gone in many neurological departments in hospitals throughout Europe and the USA. I have never seen other fits and cramps than my own, on film or in the mirror. During the 90's my wife took a film on my request of my grand mal seizures and birth primal so that I could study them afterwards. (Unfortunately those VHC  videos disappeared on the neurological department at the hospital in Helsingborg, Sweden.) Besides that I've read a couple of interesting books about epilepsy, I personally know of no other cases. It has been part of my strategy, to avoid the shame, officially to shun contact with epilepsy. However, I  can by using Google easily print a list of 100 famous people who suffered from epilepsy. Those individuals interested me because I needed virtually to share and alleviate my suffering with successful people to feel important in my epileptic loneliness. I have done everything possible not to meet with ordinary people with epilepsy, in order not to disclose that I was epileptic and officially to run the risk to receive an epileptic stigma.

The reason for my thoughts about my lack of genuine epileptic contacts and the lack of general knowledge about epilepsy comes from a study I did of Art Janov's book ‘The Janov Solution.’ The word epilepsy is not mentioned by a single word, while suicide is mentioned more than 20 times. Is there a correlation between my own avoidance of epilepsy and lack of information about epilepsy in DR Janov’s book?

By the way, looking up epilepsy on Google, there were 18.700.000 results in 0.27 seconds.....

There are two ways to be fooled:

One is to believe what isn’t so; 

The other is to refuse to believe what is so.     

Sören Kierkegaard