A TLE Tale
A TLE Tale
by Anoop Alex
Published by Anoop Alex at Shakespir
Copyright 2016 Anoop Alex
Shakespir Edition, License Notes
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It is with some reluctance that I start to write this document. I am a 38 year old man who is still dependent upon his parents for support and will be on some caregiver probably for the rest of his life. The title for this really should be “The Dependent TLE Adult” but I suspect a too honest title like that would only reach a smaller audience.
I am a person who used to be filled with self-hate and low self-esteem. Almost entirely due to my inability to fit into society due to the limitations introduced by my epilepsy. I love my parents but my almost total dependence upon them, the fact that I don’t really have anything to call my own and the restrictions in my life really rankled. And possibly still does on some level though nowhere nearly as much as before.
This book is a labor of love. If you are an epileptic who has overcome challenges to achieve an independent life then you will probably not like this text. In fact, you may actively dislike it and believe it presents a disheartening message to fellow epileptics. I am trying to reach those who find themselves trapped in a metaphorical prison created ultimately by their condition. I decided to write this after Googling strings like “failed at everything” and “parents are too overprotective” when looking at epilepsy sites.
I am not trying to tell others that they can always overcome the limitations they face or giving them a pickaxe to break out of their cell. Rather, I hope to show others a route by which they can learn to accept their limitations and how to make their prison more homely. Never be ashamed of yourself. It serves no purpose except to bring you down.
You may not like who you have become but you don’t need to think like that. Self-help books and advocates like to present the idea that you are someone who can overcome any barrier but that is just a myth. Rather, it is better to realize our difficulties in life, try and see if we can overcome them if we wish and accept it if we can’t. There is no objective fixed number of tries before acceptance. We will know when we have tried enough simply when we no longer wish to try anymore.
Epilepsy is not always an easily controlled condition. This is especially true of idiopathic epilepsy. That simply means epilepsy without a known cause. But I am not here to discuss the medical aspects of epilepsy. Even when it becomes well controlled, either through medication or surgery, an epileptic can face discouraging aspects in life. This can be in the form of unemployment, frightened parents who always lay down too many laws hoping to protect you or you may face a disconnection from society and be turned into an introvert against your will.
Unemployment essentially makes you a dependent adult since you need some source of financial support in today’s society. It can be usually either family or Social Services. An independent epileptic might say that you can always find a job. This may be true but only up to a certain level. What if one keeps having seizures in the workplace? What if you were unable to complete a college degree due to epilepsy? What if your short term and long term memory can be really flawed either due to anti-epilepsy drugs(AEDs) or recurring seizure activity? These can all be impairments to independence and I have experienced all of them. I know I have held jobs for some period of time but I cannot recall too much of the past ever since my seizures became stronger and more frequent and uncontrolled.
I am not advocating laziness, though for a long time I thought that was the road I was taking. Here I was with nothing to do and all these people doing things so I wouldn't have to. But I realized I was not trying to escape from work. When it needed doing, I would do it ---- though it wouldn't be much. Maybe some chores of housecleaning, laundry or somesuch. Only dead people don't do anything. In reality, I was willing to do work when life asked it of me. When it didn't I eventually became willing to relax and not think I should be doing something even if I had nothing to do. That took some time to sit right in my head however.
If we feel we are no longer a part of reality, we may turn inward against ourselves. This is what usually happens when reality is different from what we expect. Having a strong intention is good but when we do not get what we intend, it is time for re-evaluation. What went wrong? Was it us --- the inner reality over which we have some control? Or the external reality over which we have very little control? Berating ourselves for the result of something over which we have very little control is pointless. Epilepsy is one such thing. Medication may or may not control it. It's effect can change our lives in an instant with very little warning. So I learned to accept my epilepsy. I am dependent because of it. I tried to break free but it intervened in almost every case. Now, I simply accept my dependence due to it. I will not hate myself. I will enjoy the good life I have despite the limitations that are also there.
The following will essentially be about my past. The reason I am putting forth basically an autobiography of a non-famous person like me is simply because I am hoping that you as a fellow epileptic or caregiver to an epileptic can draw parallels with your own life. I have found it reassuring to know that I am not the only one facing these difficulties.
If you are not interested in reading about my history then I suggest you do a text search for the string “Disqus” which will jump to the last paragraph which is about the most interesting experience in my life that I like to share but has nothing to do with my epilepsy.
So where to begin? Perhaps at the beginning since that is always a safe bet. I was born in Southern India but only lived a couple months there before being whisked away to the United Arab Emirates(UAE). The Western mind might be more familiar with that place under the name of Dubai. My father worked as a mechanical engineer and my mother worked as a registered nurse. When I was approximately 4 years old, my mother noticed I would just stare blankly while doing homework. When I was taken to the hospital, an EEG confirmed a diagnosis of epilepsy in my brain. Specifically, absence(petit mal) seizures. Tegretol controlled it completely.
In fact, the medication I took controlled it so well that after two years it was decided to try and stop the medication. But instead of tapering the reduction of the medication, the doctor there decided to make me stop cold turkey for some reason. Within a few days I started having tonic-clonic(grand mal) seizures. However, once again, with medication they were fully controlled. My epilepsy had almost no effect on my childhood really. I attended school without any issues and don’t really know if I made my friends there aware of my condition since it didn’t make itself visible in public. Or private for that matter.
Two years before the end of my high school my family decided to settle in Canada. In fact, my father would stay in UAE to support us and my mother, brother and I would go to Toronto. Early on, life was good there since I still had no seizure activity. I ended up going to a Catholic high school but still had no public seizures. However, I do recall one status seizure at my home where I become conscious during it temporarily. The memory I have is one of my mother crying and hugging me while my younger brother watched wordlessly. It made me realize how much my family loved me but also gave me a sense of guilt for being such a strong source of pain for them.
I graduated high school with a decent score and ended up being accepted to the University of Toronto for a B. Sc. in Computer Science. Living in the dormitory there was the first time I was living separate from my family. I recall a diversity in the culture of my roommates. They were all born and bred in Canada but one was Chinese, one was Indian, another from the Isle of Mauritius and another Scottish.
I really have practically zero memories of university due to my recall issues. I was doing ok for 3 out of 4 years of my B. Sc. when suddenly out of the blue my epilepsy became serious and was no longer controlled by the medication but I was having complex partial seizures. Truth be told, I have only 2 strong memories of university. In one, I walked away during an exam to my dorm unconsciously. In the second, I had a seizure while French-kissing a girl I liked for the first time. She broke up with me on the spot. I guess the shock value of coming out of a complex partial seizure fixed them in my mind.
I am guessing my seizure trigger is stress. I am currently on anti-anxiety medication as well as anticonvulsants. I ended up unable to complete university and because of the poor public healthcare system in Canada where you can end up waiting months for an appointment, even when there is a pressing issue, we left the country and returned to UAE. Made a temporary detour to the US along the way looking for treatment. I have no memory of any of these experiences --- just learned about them from my parents.
This memory issue became kind of serious when I reached a point where I’d forget what I had been thinking a second ago. So now my short term memory was at risk. My parents were going to an Ayurvedic resort for treatment of some serious medical issues and I was taken along. There, I was given some medication that helped with my short term memory issues but the main event that struck me there was of a spiritual nature.
At the time, my beliefs were agnostic in nature but while at the resort I experienced a temporary clairaudience with a voice in my head that told me:
I am God
First I was One
Then I became Two
The Two became Three
The Three became Many
Unless you have had a similar experience you will not understand the significance of this one. But it turned me from an agnostic into a spiritual seeker. Many months later I was surprised to find a very similar statement to what I heard in the description of the Tao.
I was, and still am, somewhat unsure if the above experience was communion with a spirit or a positive psychosis instead. I prefer to believe the latter even though I am on anti-psychotic medication. All the spiritual experiences I’ve had could be explained by positive psychosis but the experience is practically the opposite of the few actual psychotic episodes I remember which are depressing, long term and result in my hospitalization.
The first negative psychosis I remember took the form of me thinking I was dead and was being dragged around in Hell by demons who were telling me that my punishment was going to be me attacking my mother. There was no visual component to it. The entire episode took the form of voices(mine and others) in my head. When it ended, I woke up in a hospital and became depressed over the fact that I had thoughts of attacking my mother. This feeling lasted for about a month until I realized I had been fighting the demons, not going along with their plan.
I kept looking for something to do and found a place in India(Don Bosco) that was asking for volunteers. I don’t recall how I convinced my parents to let me go abroad. Later on, I realized they must have got in touch with the place themselves since I was given a small room and meals at that place. I recall great joy at volunteering for a while but not what I actually did there. Teaching kids something I think. I was there for 2 months but left when summer came around, the kids were gone and I was on my own again.
Then, I had 2 years seizure free. I was still taking medication but thought my seizures were completely controlled now. It got to the point where I decided I could get married and work with my father. An arranged marriage in India was setup and completed but within a few months of that my seizures returned.
I was married for 3 years before my wife asked for a divorce. I had tried to be a good husband but failed in the bedroom. In retrospect, this was lucky as I don’t currently have any children to be responsible for. My wife was a young girl not serious about marriage. She even sent me some taunts via email after the divorce and I decided then that I wouldn’t keep in touch with her.
So I was back with my family and still a spiritual seeker. I had another experience in India where I was walking to my room and out of the blue a voice in my head said:
The future is uncertain
It was a stronger experience than the previous one but I am still not 100% sure how to interpret it.
Another event that I do recall is breaking my shoulder(clavicle) in the shower when I had a seizure. It healed but the upper arm bone is now subluxated meaning that it temporarily dislocates(for less than a minute) if my arm goes in awkward positions. Because of this, even when I offered help to lift items, I was forcibly banned by my family. They worry much more about this injury than I do.
I was still a strong spiritual seeker and still am. I find the works of Krishnamurti, Watts and Osho particularly interesting and a lot of their texts really speak to me. Perhaps the greatest understanding I’ve had because of a spiritual path is that:
Pain is inevitable but suffering is optional
I don’t know where I got this concept. Maybe from Frankl’s Man’s Search For Meaning but when it came to me, I conducted an experiment that cemented it within me. I went to the kitchen, heated a small ceramic plate in the microwave for 2 minutes and then held onto it without dropping. The pain was extremely strong initially but I looked past it and it eventually went away. I had a second degree burn when it was over but, now in my mind, I believed any physical suffering could be mentally overcome. Now there is only a scar on my finger. I also extrapolated this to emotional suffering since I had experienced fear seizures. These were cases where I would feel extreme fear but know I was not afraid. So feelings were separate from what I thought of as “me” as well.
My experiences led me to decide to start a discusssion forum on Disqus called Spiritual But Not Religious that was for discussing personal life experiences that led to belief in spirituality. Other spiritual topics were also brought up by recurring posters. This site was the source of the most interesting experience in my life where I was given what I consider to be proof of the concept that each being has their own thread of reality. I was typing a post to someone on the site when his reply to what I typing appeared on the forum before I posted what I was typing. If you go to https://goo.gl/YacaZX you will see a post about me responding to elements of a post that follows instead of one that appears before. The person I was talking to thinks I am lying about the nature of this experience and has a different explanation for what happened. This is understandable since in his reality nothing out of the ordinary happened. My interpretation is that both of us are right since the experience for me is proof that differing and even opposing realities can simultaneously be true. The time within reality can be like a river that splits into multiple forks and then joins up again later. The most interesting part of the experience is that it provides actual evidence that is available on the internet and will thus help you determine its validity.
I hope this text has been of some use to you. My experiences in life, both spiritual and regular, have led me to believe in the power of unconditional love. If there is a God, I believe it loves all beings as they are. That is what true unconditional love is. Not loving others only if they match and conform to some concept that you decide. The reason I brought up unconditional love is that I believe if we can attain that it will help us overcome all negative experiences of our personal reality. But before we can pass on unconditional love to others, we have to learn to have unconditional love towards ourselves. If you don’t love yourself then you cant imagine others loving you also. So I hope this text has helped you. If you wish to discuss anything, feel free to send an email to the address at the first page.
A TLE Tale
- Author: Anoop Alex
- Published: 2016-08-01 11:40:07
- Words: 3052