Epilepsy - A Part of Me
Introduction
To begin with, my name is Tarushi Tyagi1. I belong to city name Alwar2, India. By profession I am a Chartered Accountant3, member of Institute of Chartered Accountant4 of India and have been working for a bank for the past 6 years.
I have wonderful family of 4 including my mother, father and brother who have been a great support throughout my life. They brought me up with lots of love, affection and most importantly never made me feel that I was different from other kids because I had epilepsy. They didn’t ever make me feel that I wouldn’t be able to do some things in life. I still remember my doctor telling me that I couldn’t do 2 things in life: fly an aeroplane and drive a bus.
Diagnosis
I have had epilepsy for the past 24 years. For as long as I can remember it has been a part of me and I am part of it. I don’t think of it like a disease though, rather it’s simply a part of me. The sooner we accept ourselves the way we are, the sooner we are set free - trust me, it’s the best thing in world and I love the feeling.
I was 7 years old when I first had a seizure in school. My doctors told me that this didn’t always mean that a person had epilepsy, but, after having a cluster of 3 seizures just after lunch one day, I went on to have an EEG and MRI, the results of which led to my doctors diagnosing me with epilepsy. They diagnosed me with a rare form of Reflex epilepsy5 known as Eating Epilepsy6. My uncle is a doctor hence I was lucky to be in the right hands regarding the diagnosis.
Multiple doctors were consulted all over in North India7 but were not able to reach or decide upon the drug or dosage that could suit my body and stop my seizures. I was referred to another doctor in Delhi8 who was able give me partial control over my seizures however.
All my life my seizures have occurred between 3 and 4pm, just after lunch! I used to tell my ma (mother) that I was seeing lots of flashing lights around my eyes and that I wasn’t feeling well, and I would then go and lie down.
Both my parents have personally focused and enabled me to focus on both my studies, and the things that I excel in. Families, relatives, friends, and schools have the responsibility to support people with epilepsy just like they would everyone else. They must be treated with equality so that people don’t feel that they are less than anyone else.
Through the support of loved ones I have been able to overcome hard times and look forward. Many times that I’ve had seizures it has been due to stress from my studies. After the seizures I would have a cry, put the seizure out of my mind and focus on plans for the next day.
It’s very important to be able to find things to look forward to. What has helped me is to decide upon and lay out my goals in front of me.
Reduced medications!
After being seizure-free for 7 years (during which I completed one of the toughest national courses in finance), my doctor told me that we were going to slowly reduce my epilepsy medication dosage and have me come off of them over 2 years.
I’d previously had my body tell me to sleep 13-14 hours a day but my mind conflicted and told me I should be active – they conflicted. Anyway, after 2 years I was taking only 1 medication and the way I felt was like nothing I’d ever felt before – I felt so fresh and with so much more energy that it was like I’d just sobered up from drinking! 😊 This made me realise the psychological and physical impacts that my medication had been having on me.
Feeling energised was new to me as at age 25. Being on this one medicine didn’t make me feel sleepy and I’m told that I didn’t look sleepy to other people anymore either!
Mental health - depression & negative feelings/thoughts
Negative emotions hit you back even after having greatest support of loved ones.
Whilst I was enjoying an energised life, I had another seizure. I’d completed my studies but was jobless and I went into very bad zone of self-doubt. Some jobs I had to turn down because they’d have stopped me from getting the sleep I needed (sleep is like a form of medicine!). After a while though I got some great news: I’d won a job with an amazing organisation!
After 3 months with the new company I had another seizure, in the office. I’d told my colleagues about my epilepsy though, so they took good care of me. I was back to the office after 4 days although was feeling drowsy because I’d had to have my medicine dosage increased.
Increasing the dosage caused a new negative psychological issue for me as well; I feared that I might have another seizure and was really doubting myself. I did find some ways of relaxing, but I started distancing myself from people: I felt that I had no choice but to do so.
It took me few months to get back to “normal” – and life was really challenging, but I did it and had another wonderful 4.5 years of seizure freedom!
In October 2018, my seizure freedom ended again when I had 4 seizures over the period of a few months. The dosages of my medicines were increased again (!), but this time with different side effects. It’s crazy stuff: you don’t know how your body will react to the medicines. Again, I had an issue with coordination between my mind and body, which was so frustrating. I tried everything to get back to my normal life through routine, but it was quite a struggle. One day I read a quote:
Albert Einstein
It felt like a miracle that I was still alive. Every time I had a seizure my first thought was: “My parents will be worried, and I am troubling them again”. Slowly and gradually though, I removed my feelings of guilt from within and started taking 1 day at a time.
Due to the latest dosage increase I was sleeping 12 hours a night, but as I got used to it, I felt less tired, and now I’m back to 9.5 hours – it’s a happy moment for me.
My next target is to get back to 9 hours and start yoga/meditation which is crucial and just like medicine and sleep for me.
Conclusion
What I have learned from my journey to date is that the most control I have over my epilepsy is to take my medicine on time, keep to my sleep schedule and try and manage my thoughts (which can play a crucial role in overall health).
For families who care for anyone with epilepsy, providing them with emotional support and confidence can encourage them to lead their lives with confidence. They might still face negative thoughts and self-doubt but having a strong family foundation can help them towards overcoming this.
Accepting the diagnosis of epilepsy has helped me to live with it and how it has influenced much of my life. Acceptance is key. There is not a specific path; each day brings new beginnings and new struggles.
During these unfortunate times of COVID-1910 we need to take care of ourselves as it is deeply impacting many people mentally. Take care of yourself and those you care for both mentally and physically.
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