Epileptic - Omolola Asielue
This is a graphic memoir written by B. David. This memoir details the author’s emotional response to the family turmoil generated by his brother's epilepsy and how the family struggled with the stigma associated with disease. The author explained his parents' fruitless search for treatment to control the seizures which included: possible brain surgery, consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, and psychiatry.
He explains how the illness made the his family move to isolated areas and their attempt to cope with his brother’s disturbing behavior that alternates between passivity (flat affect) and physical aggression.
The author stated that he filled his time with constant writing and drawing in order to “prevent my brother's disease from reaching me". The author, described feeling lonely but he avoids people, and he felt guilty for neglecting his brother because he feared that he will be taken over by epilepsy or death.
This memoir reflects how epilepsy affects the whole family. I have always thought that the stigma and loneliness associated with epilepsy was a burden to just the patient alone. It never crossed my mind that the family too needs to be counselled about the disease state, side effect of the anti-epileptic drugs and how to help the patient deal with the disease. As a health care professional, I will be showing my patient with epilepsy more empathy and help parents and caregivers to better understand how epilepsy affects the family.
Hello Omolola, you are so right. We usually focus more on the patient and his pain and how to make him feel better and unintentionally forget about the family. Any patient's family suffer also, sometimes they even suffer more than the patient himself. They suffer when they see their beloved one in pain, can't enjoy his life and maybe neglected from the society and they just stay there hand-tied don't have much to help. Counseling them how to deal with this situation and giving them enough information about the disease state and the treatment, showing them empathy and care will definitely make their lives better. Sherry Sobhy
Sherry, I really like your comment on they way you explained and made connection between patient's suffering and their family members ' feeling and sufferings. Yes, they are always there to help and comfort the patient. Feel what the patient goes through and help to make their lives meaningful, comfortable and painless. Simon Rasho
I agree, Sherry. I think we oftentimes are so focused on treating the patient that we forget the "caregiver burden" that can sometimes occur within the family. When dealing with younger patients, I often only think of the impact a disease has on the patient and their parents, but siblings can definitely be impacted as well. I agree that we can do our part by expressing empathy and being aware that epilepsy affects the whole family. - Samantha Varghese
I agree with you here most often with many neurological diseases there is a stigma associated and the family members have to go through it. There are so many myths associated with the disease and efforts need to be made to increase awareness among the people.....Deepa Pednekar
I agree with you, Sherry! I witnessed that first hand! At work, a customer suddenly started seizing in front of the pharmacy counter at work. After the attack was over and EMT were helping the patient up, I found her mom at the corner crying silently alone because her girl is suffering. No one was around for the mother. Everyone was focusing on the patient. -Marian Ayad
Yes Samantha, I agree with your response that we tend to forget the caregiver and concentrate on the patient. We should offer support for the caregiver and also advice them to seek help if they are stressed out from caring for their loved ones- Omolola Asielue.
Yes Deepa, there is is a lot of stigma associated with epilepsy. Patients and their family suffer form these stigma as well. It is relevant to increase awareness and educate people about this disease and also provide resources about where family members can get help. ---Omolola Asielue