— My name is Doug Pastorius. I live in the bottom end of the Ontario, the Essex County region, a farming community, Leamington Ontario with greenhouse industry happening all around. I have a small family. My mother and sister, my separated wife that I still thankfully talk to after all these years, and she calls me just as often in such good caring outreach though we live far away in different provinces. I have had a lot of family members pass away in the earlier years of my life. I am fortunate to make friends often with people in my local area around to show care and give me the chance to give care back. I have been dealing with epilepsy all my life —
I have seizures frequently and will have many different kinds of seizures too and not always the common Grand Mals (Tonic-clonic), but will have Petit Mals (Absence), narcoleptic seizures where your body is responding to some degree but the mind has went to sleep and is unaware of its surroundings for that short time momentarily, other types of seizures where I gently shake all day on and off like how it feels to be sneezing or being chilly from the damp and not being able to control it at that moment.
I will lose my theoretical memory, forgetting people’s names, statistics and facts, politics and history, to misplace my weekly schedule, misplace my stories when in conversation but I am still able it seems to be to hold on to my mechanical practical part of memory (like playing piano, reading maps, mathematics and being able to count and remember) but will still lose the control for these other informative parts of the memory and concentration when having these seizures and am in the healing stage until I have recovered. I will forget, lose my way with being creative, will lose my concentration to certain high degrees and lose my emotions but over time get them back after I recover. I lose my ability to be angry, bored, irritable, sad and melancholy, malicious and mean-natured, funny and humorous, charming and flattering, arrogant and stubborn, the ability to have fun and being adventurous, to worry and feel stress, to be proud and to have motives and desires to pursue, to make decisions with completeness and sincerity, even to lose my fears and I become oblique or coma-toast for the time being. I will still be scared to some degree where I find fear is my strongest emotion but the rest of my emotions and mental feedback will be dormant and displaced with the only exception of this one greater profound energy that watches over me and I find it protects me as I’m alone. When I was a child and with my family, this was referred to as the Holy Spirit. I will suddenly cry with a strong passion for love for others and even myself, which is so hard, but I am then very happy and in great comfort at that moment from this greater force. The seizures don’t seem to break away from this frequency of greater energy. God bless it being that this frequency can still work with me around this terrible chemical imbalance, mishap and confusion.
— how I live with this strange lifestyle —
I have learned to not be able to often do the things I would have wanted to do. I have lost a lot of my social exercises and miss accompanying friends, laughing, charming about, getting lost into entertainment like watching sports and movies, going on local walks with and sharing in the memories of the stories that we all know together, this way reminds me of how my family used to hang around with each other when I was child with my cousins and siblings.
I learned to eat a very careful diet that is usually persistent and diverse that my body chemistry understands, I miss binging and the foods of all different sorts and different cultures. I always read the ingredients to what I eat hoping that I can have it. I only have a plain smell in my house with no fragrances and not have all these different chemical smells and incenses. When the mushroom farm out in the country where I live blows in my direction, I have to close the windows to my house facing that direction. How irritations offset the neurological balance triggering ticks and seizures. Flashing lights from the television or sirens from the fire trucks and ambulances, hearing the person’s voice along with my own meanwhile talking on the phone can trip seizures.
I had to learn to humble myself over the years since I was a child, to have acceptance for was easier on my stress rather than suffering humility and expecting perfections from myself for what I may not be able to have. More often I am not able to comprehend and control this frequency and would be in a stupor from the seizures so I can’t contemplate and make choices. It’s still taking me a long time to adjust to this way of falling backwards settling with this unfortunate way of nature. To live a life to where the convulsions and seizures will always come back. If the seizures come back sooner, I can’t heal as well as I can because I have another seizure to handle. I went to college, paid for and had to stop, got my driver’s license as a teenager, found lots of work, played piano for very many years and had planned to make a life for myself too just like people regularly do. Overtime throughout the years, I eventually learned so much more closely that people in general are meant to lose things in life and that our choices and motives are not often the reasons for why we lose our achievements and that it is fate and that things are set in motion for us all. After getting my license resubmitted to me a dozen times more only to have it suspended again too many times, I finally was going to learn to make a choice not to drive anymore and experienced frustration and was even intimidated too. It was going to be hard on me to keep a relationship with my spouse and keep her satisfied as I was learning that people grow, and we all demand for change in life. It was going to be hard around people on a daily basis because I couldn’t give them what they wanted and meet their goals, to not be able to give feedback to their responses or not have any defense to say on any remarks they would expect, for that nothing was turning crank upstairs in my mind and I was just dumb in that stupor. The ability to play the role of a leader, to be a host with lots of responsibilities to carry out, to be dominant and be a boss towards others at work and in my music career was going to be very hard for me.
My mother today still needs to be as gently explained every time as she has a very practical mind of comprehension and if I can’t explain it well enough because I may be in a stupor than I can’t help her to understand even though I have explained it to her many times before but that we as people all forget the answers to our questions we ask because we are very instantaneous, moving with the moment and will not be able to remember three weeks down the road how they managed trying to understand before.
I have been thankfully fortunate to be sensitive and patient to others that have had unconsciousness in their lives or other sad matters too, I don’t talk to them as they’re not talking either but keep them company and sometimes hold their hand until they become aware of themselves again and are in a somewhat saddened but confused state.
I have found especially that not having my memory and emotions with me until my recovery period comes back, keeps me safe a lot of times from overdoing stress from outside matters and problems because I wouldn’t be able to register to the hyper frequency of my thoughts or emotions causing me to worry. That this sedated state is a relaxed way from the natural human anxiety that we suffer so much with. I’m not able to learn as fast as when I’m on a more open-minded frequency not having seizures when I’m in this “coma toast," state but thankfully always healing and recovering from the condition. — God willing, that we are thankful for the art of healing and forgiving throughout the many obstacles in life that we go through and get hurt from along the way. —