Rah* family was sitting around Dastarkhuwaan to have their dinner when suddenly the youngest daughter of the family started shaking. She was having an intense seizure which was slowly gripping her whole body. Rah* family panicked and did not know exactly what to do. The situation lasted for three and a half minutes until she came back to normal. And as soon she regained her consciousness she started crying. Blood oozing down from her mouth.
“She looked as pale as anything,” recalls the mother of the family. “I thought my daughter was possessed,” she said while tearing up.
The family took their young daughter to all the faith healers to all the peers but to no avail. The condition of their daughter was worsening. The family went to all the lengths to seek help for their daughter. “We went to all the peer babas, our relatives and friends suggested. Everyone used to say one thing or the other. Everyone was giving advice but nothing was working out for us,” the mother further added, “Witnessing the condition of our daughter, we had actually given up.”
The daughter continued suffering from these seizures continuously but no one knew “what should be or has to be done.” It was until when a distant relative of the family advised them to seek medical assistance. So the family took their daughter to a very famous neurologist of Kashmir.
The daughter who was barely three years old at that time was put under several tests and was diagnosed with epilepsy.
The young child was put on a medical course that the doctors said were anti-epileptics to help in controlling the seizures of the child.
The medication continued for another four years until she was seven and was put off the medicines. But the doctors advised her parents to take some precautions seriously so that, “there will be no other episode of epilepsy.”
What Actually Does Epilepsy Mean?
Epilepsy is a neurological disorder in which due to brain activity becoming abnormal, a person suffers from seizures or periods of unusual behaviour, sensations and sometimes loss of awareness. Anyone can develop epilepsy at any age. There are annually more than one million cases of epilepsy in India. It is the fourth most common neurological disorder in the world. It may occur as a result of a genetic disorder or an acquired brain injury, such as a trauma or stroke. Epilepsy has several symptoms as defined by Mayo clinic, like:
- Temporary confusion
- A staring spell
- Stiff muscles
- Uncontrollable jerking movements of the arms and legs
- Loss of consciousness or awareness
- Fear, anxiety etc.
Psychological issues, such as depression, anxiety, and suicidal thoughts and acts, are more common in people with epilepsy. Problems might arise as a result of difficulties managing the condition or pharmaceutical adverse effects, but even persons with well-controlled epilepsy are at risk.
As the young girl grew up her family forgot the doctor’s advices. She did not know that she had suffered as a child. And one day when she was studying something went off with her. She was sitting with her sister when suddenly her body started shaking again uncontrollably, the sister was frightened she did not know what was happening. She called her parents and when they came, they were facing their worst nightmare. “I remember when I saw her going through the same situation I was devastated,” the father said in a low tone. “I did not know why was this happening to my daughter, I had no answer, I had no clue,” he added. The family started taking her to doctors and a series of tests were ran on her, and “epilepsy had relapsed,” the doctors said. “The doctors said all her tests were not showing good results,” the parents recalled. “They kept her on a high dosage of medications. She is now 20 years old and we are dead worried about her future,” they added. The parents also said, “This is all our fault. She is suffering because we were not careful.”
The daughter who now is twenty years old in a conversation with Ground Report opened up about her struggle with epilepsy, ” It is really difficult to take these medicines continuously. I did not initially know what exactly was happening to me. Then I came to know of this term, epilepsy and I immediately googled it. And there was a lot of information and it scared me to death.”
She also shared, “I was really sceptical about my health about my well-being, about everything. I used to think I am going to die. All the doctor checkups, medications and tests were exhausting me.” She further added, “And my mental health was in splits. I was depressed and I was having self-harm tendencies.”
Epilepsy however came up with its own sets of challenges for the family. “The biggest challenge was the speculations people made about our daughter. Some people said she was possessed by a djinn, some used to say that she has saayaa and others said she was under drug influence because she was having constant shivering,” the parents said.
“People have said the most bizzare things to my face. They forget how to be kind, I have suffered I am still suffering but people just do not understand,” the daughter said.
The girl and her parents have a heartfelt message for the people, “We request everyone to be kind, you never know what other people are going through. And there should be an awareness created about epilepsy at every level so that people know what to do in an emergency situation. Help people in need.”
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