Last week, I wrote that I took an 8-month hiatus from writing. My story below is not a cry for sympathy, it is a story that I wish to share about my journey, about how life can change so rapidly, and how you must go with your gut and tune others out. It is an attempt to start a movement to help better educate those within our community and put our voice and the power of social media to use.
In November of 2019, I started having episodes of shaking during my sleep. This change happened within me overnight. I was not too sure about what was going on, but my husband was already seeing a neurologist that we loved so I decided to see her.
After my initial visit with her, she thought that based off of my symptoms, I was having seizures. She had me complete some blood tests and imaging and once all of that came back as negative, she had me complete an EEG (brain study) for 72 hours. The study showed that I was having at least 15 seizures a day and since there was no pattern to these, I was officially diagnosed with Epilepsy in at the end of January 2020. Epilepsy is defined as a chronic disorder that is caused by reoccurring unprovoked seizures.
As the first one diagnosed with this brain condition in my family, it was interesting to hear people’s take on what they thought was causing my epilepsy and how it should be treated. This took me back to the time when I had a kidney stone and everyone kept telling me that I had gas and to just try to go the bathroom to feel better (all you desis know what I am talking about!). The idea of it being gas changed when I started to vomit on my mom and dad’s bedroom floor- sorry about that guys!
Now that I have taken this post on a tiny tangent it’s time to get back on topic here.
Between February and June, I was put onto 6 medications. My parents advised me to try acupuncture, which, while it did not fix or help my epilepsy it sure has helped me feel relaxed. If you have not tried acupuncture, I highly recommend it. My parents believe in modern medicine, but they also believe in natural ways to prevent and cure illnesses (allopathic medication), and they had their ideas but ultimately realized that my neurologist and neurosurgeon had the best plan set for me. But then, as with most desi families, everyone has to give their input. Try yoga, try breathing exercises, pray and it will go away, are you sure that the doctor is just not making this diagnosis up? Could your diet be causing you to have reactions? Each and every time, my answer remained the same- while I was appreciative of their concern for me, my brain studies that I witnessed from my own eyes could not lie and no one, other than me, knew what my body would feel like when I would seize.
As all else failed, exactly two weeks ago, I had surgery to have a machine called a VNS implanted to help get my epilepsy under control as I do not respond to medication (I have something called Drug Resistant Epilepsy). I am excited to see how the machine helps me with my condition it I have a while to go until I can start to see the impact of the machine. This past Friday, I took a fall, I am not sure if I tripped or had a seizure, but all I remember was waking up and being in a ton of pain exactly where my incisions are and was taken to the hospital.
I commend our nurses and doctors for everything they are doing as we live through this pandemic. My surgery kept me in the hospital for two days, but being in an ER setting was a completely different story, full of stress and worry from doctors and nurses. However, this gave me the opportunity to teach my nurse about my machine and how it works so the next time someone like me enters their ER, they will be familiar with the VNS.
Now that I have given you the backstory, here is where the meat and potatoes of this post starts. Within the Indian culture, seizures were and at times are still thought to be the result of evil spirits possessing one’s soul. There are beliefs that just by watching a video of a certain Baba (wise man), you can be cured of your issues, or by visiting a certain place, you will be set free from all of your medical ailments. I consider myself to more of a spiritual person than religious and so if I offend anyone with my thoughts or beliefs, please keep in mind that this is MY take on things and you are always entitled to your opinion and beliefs as I am to mine.
In rural areas of India or within highly superstitious families; in areas where access to education is limited and beliefs are passed along from generation to generation, having a family member with epilepsy is frowned upon and often hidden from others to see or know of. While I am not saying that this is the case I with everyone, even in the year 2020, there is still a stigma that epilepsy is contagious. For some, having epilepsy is a reason that women do not get married or a marriage leads to an annulment or divorce.
I read an article in “The Hindu” regarding a 34 year MBA graduate who was diagnosed with Epilepsy. I myself am in my early 30s and have an MBA, so I can relate to the character in the news article. However, she was asked to quit her job when they came to know about her medical condition. I am incredibly blessed to have a job where people are understanding and also have laws that protect me against such action being taken.
Now this article was just written two years ago, and based on how 2020 is going, we can just eliminate this year off the books! The article talks about how there are beliefs that by branding one’s body, the evil spirits that cause epilepsy will go away. At times, it is recommended to carry a set of keys with you or keep a metal spoon in your mouth to cure one of this “mental illness”. While in metropolitan areas, treatment and education are readily available, the same does not apply in rural areas. Instead, the belief is that someone has conducted black magic on the person and the subject undergoes several brutal sessions to get this demonic spirit out of them.
What is alarming to me but not so much at the same time, is that while looking into this, several if not all articles had to do with how epilepsy is a burden on families when it comes to females- not one article that I came across had anything to do with males and the stigma around a male having epilepsy. Perhaps I did not dig enough to find this but even when I googled “Epilepsy beliefs in the Indian culture” the hits that I received were mainly about women.
As a female who is Indian, I want to help educate as many people as I can within my culture about this condition. I want to ensure that education around epilepsy can reach even the most remote areas within South Asia, to help people understand that epilepsy is OKAY and that there is no need to be ashamed of having it or having a family member with it. And that is where I need your help! Share my story with whoever you come across, and let that person share the story, and so on. Together, we can help END this stigma and help people get the medical treatment that they need.
Should you wish to become more involved in the education and awareness of epilepsy in the United States or have questions, I welcome you to visit www.epilepsy.com and if you wish to help in India, please visit their Facebook page to see the latest steps and what events have been put together to help spread awareness https://www.facebook.com/epilepsyfoundationindia/
Together, we can do a lot- and if you have any questions or feedback for me, please do not hesitate to reach out- it would be greatly appreciated. See you all next week!
Very good.
Thank you for sharing! And having gone through this experience yourself, you know first-hand how important it is to get rid of the stigma surrounding epilepsy in the desi community. I hope the VNS works out for you—I’m sure you’ll keep us updated as you continue to spread the word 🙂