This is a transcript of my conversation with Bella in Yogyakarta, Indonesia. She describes her experiences growing up with epilepsy. Throughout her childhood, others have judged or alienated her because of her disease. This is her story of overcoming the stigma others have placed on her.
She spoke Indonesian, and our friend, Hanisa, translated our conversation into English. Because of the way we switched languages throughout the conversation, I decided to post a transcript for anyone interested in reading Bella’s original statements. For anyone who, like me, does not speak Indonesian, all you have to do is copy and paste her statements into a translation app.
Original Version Published Here: https://youtu.be/m8GGnTFydqM
Transcript of Our Conversation
[Stephen – Video’s Introduction]
Hello everyone. This is Stephen with the Curious Life and this video is the first video in a series I’m starting. My plan is to interview people in the different places I visit as I travel the world and talk about their struggles, talk about what life is like for them, and in some cases some of the biggest struggles that they face. The idea is to help people think about the different types of struggles people face in different parts of the world and maybe help people who might experience a similar type of issue in their own context and help them think through how to navigate it themselves.
In today’s video, I’m going to talk with my friend named Bella in Yogjakarta in Indonesia. So she’s going to talk about her experiences growing up with epilepsy and maybe most importantly how people treated her growing up. A lot of people alienated her and bullied her and did a lot of mean things or you know didn’t understand her or her condition. So hopefully this video will help for anyone thinking about people who might be different and what might be going on and help kind of understand the different ways that people with different conditions might behave differently and be more sympathetic. Or also people who maybe are growing up or who have to live with something like epilepsy. So I hope you enjoy, and you’ll get more videos like this in the coming weeks.
[Our Conversation]
[Stephen]
Hello everyone, this is Stephen. I’m specifically here with Bella, my friend, and also with Hanisa. Hanisa is here for translation support and emotional support as well. Bella, how are you doing?
[Bela]
Fine.
[Stephen]
Good. That’s good. And [turning to Hanisa] how are you doing?
[Hanisa]
Good as well
[Stephen]
Yeah, I wanted to talk about maybe some of your journey. So for context, could you tell people a little bit about yourself?
[Hanisa]
Jadi perjalanan kamu gimana? Kamu minta tentang diri kamu?
[Bela]
Perjalanannya sungguh sulit, kadang ada yang mudah, sulit, terus liku-liku lah ya. seperti itu. Saya
mengalami epilepsi dari kelas 6 SD dan mengalami skizofrenia mulai dari lulus SMA tahun 2020.
[Hanisa]
Eh, jadi so she said that the journey is hard for her. Sometimes it’s easy, some is hard. She has been struggling since she was diagnosed with epilepsy as well. It started in elementary school
[Stephen]
Yeah wow. This makes sense.
(Oh and one other quick thing for anyone in case you’re wondering, I do have a cold so if my voice sounds deeper or if I randomly start coughing that’s why.)
But yeah, what was it like growing up with epilepsy?
[Hanisa]
Kamu ngasnya gimana in elementary school? Tumbuh tumbuh ya kamu kamu kamu kan tumbuh gede dari kecil udah epilepsi itu rasanya gimana kamu rasanya dari kelas 6 SD itu? Heeh. mulai ke trier ya. Heeh. tentang pembulian.
[Bela]
Terus dan SMP saya memilih individu waktu sekolahnya dan akhirnya SMA saya memilih pakai C. Oh. Saya memilih individu karena saya trauma karena dibully dari kecil.
[Hanisa]
So she said that at first the most triggering experience for her was when she was in the sixth grade. When in the sixth grade she got bullied by her friends. When in junior high school, she used to be a lone wolf. She used to be a person who didn’t interact with anybody else.
So at the senior high, she chose to do Packet C in Indonesia. It’s like an exam but not the majority of people who do it. It’s not the original exam from senior high school. You can do Packet A for is for elementary school Packet B is for junior high and Packet C is for senior high [in other words, Packet A is an alternative competency exam on can take to graduate from elementary school, Packet B for junior high school, and Packet C for high school].
She did Packet C because she didn’t want to experience having to go around in school. Yeah, that makes sense.
[Stephen]
I mean, I’m glad that you had that option, but it honestly seems like there’s a bit of hardship there. How did the students bully you?
[Hanisa]
Jadi dia paham. Jadi kayak untung ada kayak opsi lain itu dia ada pakainya tadi kayak jadi bisa menghindari itu. Tapi kalau dia tanya lagi jadi kayak kamu gimana merasanya waktu ekspresi waktu pengalaman waktu kamu dibul merasanya seperti apa?
[Bela]
Saya merasa sakit hati karena telah dibully tanpa merasa bersalah. Saya sebenarnya tidak pernah punya kesalahan dengan teman-teman SD, tetapi saya dibully dan dikata-katakan kotoran hewan, kuman dan tidak suka dengan teman-teman yang lain.
[Hanisa]
He said that she was so heart-broken when she was in elementary school at that time when she was in sixth grade. She felt that there’s friends who say bad things to her. Used to mock her saying that she wasn’t even a poop of the animal. She said, “You are bacteria.” And other bad words. They all said to her, but she felt like she didn’t do anything wrong at that time. But all of her friends, they mocked her.
[Stephen]
Why did they mock you? Was it just because you had epilepsy? That seems awful.
[Hanisa]
He kamu diol-ol tuh epilepsi aja atau kayak kenapa aku bis diol kayak
kira-kira? Teman-teman tuh kayak gitu kenapa kamu tahu enggak atau kamu enggak tahu benar?
[Bela]:
enggak tahu em kamu
[Hanisa]
So she said that her friends didn’t know that she had epilepsy at that time so it wasn’t about it.
[Stephen]
Yeah this makes sense. It seems like the like in of itself having epilepsy is something that can be very difficult to process especially as a kid. And it seems like you kind of also had to deal with people treating you differently at the same time.
[Hanisa]
Jadi pasti dia bilang pasti berat buat bela kan. Jadi kayak sesuatu yang kalau
diketahui nanti kan pasti orang-orang bakal kayak gitu kayak gitu.
[Bela]
Heeh. Bagaimana caranya mengalami itu perjuangannya dan entah bagaimana rasanya yang mengalami seperti saya. Entah itu bisa pulih atau tidak. Belum tentu orang yang mengalami seperti saya akan sekuat ini.
[Hanisa]
Iya. She said that many people experience epilepsy, but she doesn’t think that every other person can survive as much as she survived. She grew. She learned as much. She didn’t stop believing in herself. She still has the courage to stand within herself.
[Stephen]
That’s good. That’s awesome. What do you think helped give you that courage?
[Hanisa]
Kamu kok bisa seberani itu se percaya diri itu dengan dirimu untuk apa yang membantumu kayak apa sih gitu?
[Bela]
Saya berjuang dengan diri sendiri karena saya menyemangati diri sendiri kalau orang itu tidak pernah ada yang memilih saya. Terus dan saya pernah dibully itu. Hm. Saya rasanya sakit hati ingin rasanya ingin balas dendam. Hmm. He. Dan saya akhirnya kelas 5 SD mengamuk di satu kelas dan mengguyur satu teman saya, teman dekat saya.
[Hanisa]
So she said that after she got bullied in elementary school, she wanted to take revenge on the people who bullied her. And that actually happened when she was in fifth grade, she took some water with her, and she splashed it on the person and burned her in class.
[Stephen]
Oh wow. This is a different story but when I was that age I also did that to a boy
who was yelling at me and I happened to have some very hot water cuz I was boiling some water. And I realized that like it’s hot, and it was bad. It didn’t burn and which is good, but like I didn’t really think about it all the way.
Yeah. This makes sense. I mean maybe in general: What was it like learning about your epilepsy and processing that you had epilepsy and some of the other issues that you also developed like schizophrenia and stuff like that?
[Hanisa]
Eh, kamu gimana
[Bela]
Kayak memprosesnya di dalam diri kamu kalau tahu oh aku ternyata emang aku absus aku juga aku rasa kamu cara mengosesnya biar bisa kayak berdam kayak udah gitu kayak gitu. Heeh. Oke. Saya berdamai dengan diri sendiri karena telah diberi saran oleh kakak saya karena pemulihan itu penting dan harus minum obat rutin jika ingin sembuh.
[Hanisa]
So she made it herself. She said that what helps her the most is her sister. Her sister told her you can be good if you keep doing medicine and you keep on growing as a person and I will be there to support you. You said that ya?
[Bela]
I oke maamin sekarang boleh.
[Stephen]
Ok, that makes sense. And that’s important to have that support from your sister, from your family. How did you feel when she said that?
[Hanisa]
Perasaan yang bilang gimana pas kakak bilang kayak gitu?
[Bela]
Rasanya tidak terima jika dikejar-kejar atau di dipaksa untuk minum obat. Sebenarnya saya tidak suka waktu itu awal kena epilepsi dan saya menyembunyikan obat itu di bawah kasur dan saya mengaku kalau saya sudah minum obat dan obatnya habis.
[Hanisa]
So she said that at first it was hard for her to accept that she had epilepsy, and when her sister said that you have to routinely have your medicine she didn’t want the medicine. So she hid it below her bed, and she didn’t drink it, but she said she drank it to her sister or family.
[Stephen]
This makes sense. Yeah, that makes total sense. I mean I’m glad the medicine can be complicated in of itself like what is the what is the medicine like I thought sometimes epilepsy medicine can be both complicated and have a lot of side effects too.
[Hanisa]
H jadi kamu kan medicin medicine perepsiaan jadi medicine perepsinya tuh apakah apa banyak atau kayak harus kayak ben harus teratur atau harus kayak berbari gitu?
[Bela]
Awal kena epilepsi, saya meminum obat dengan tiga kali sehari, pagi, siang, malam. Setelah bertahun 2 tahun kemudian, dosis diturunkan menjadi dua kali sehari. Lalu diturunkan kembali pada tahap selanjutnya jadi satu kali sehari dan tahun ini jadi 2 hari sekali.
[Hanisa]
Hmm. So she said when at first she got diagnosed with epilepsy, she had to drink medicine three times a day, and two years later she got the dosage reduced to two times a day. And then after that got reduced again to one time a day, and right now a day she only drinks it once every other day. So it’s getting less and less so. It’s getting easier.
[Stephen]
And what do you feel like? So, with what you’re saying with your sister, we were talking about focusing on personal growth. What do you think the growth has looked like for you over the last couple years?
[Hanisa]
Kan kamu tadi aa kayak fokus tentang pertumbuhan diri gitu. Nah, pertumbuhan dirimu yang beberapa tahun ke belakang ini seperti apa?
[Bela]
Saya sebenarnya perjalanan hidup ini sedang mengalami stres terus dan saya mengalami merasa kesendirian individu, tidak punya teman, merasa dijauhkan dengan teman dekat dan ingin bersosialisasi jadi tidak percaya. saya diri dan saya memikirkan memutuskan untuk mengedap di rumah sendiri menahan diri di rumah sendiri.
[Hanisa]
Hmm, so actually what she said right now was that she feels so lonely. She feels so stressed. She’d like to try to hold the life that she’s got going on lately. She felt like there are no friends who understand her, like, “I cannot say anything to anybody. My friend got away from me, and they want to get close to me.” And she said that she chose to go to her home and isolate herself there and don’t want to be with anybody else.
[Stephen]
I could definitely see that. If your friends are discounting you like that, I could understand wanting to go home and be safe there. When this happens and when you go home by yourself, how does it feel?
[Hanisa]
Perasaan bilang gimana pas sudah tahu perasaan karena kamu enggak gitu kamu mau pulang.
[Bela]
He enggak bukan e setuju juga.
[Hanisa]
Tapi kayak kamu kenapa enggak itu kamu mau pulang aja gitu enggak mau kayak gimana perasaan kamu kayak waktu pulang sendiri gitu?
[Bela]
Heeh. Banyak saya merasa tidak dianggap dengan teman, tidak berguna kepada tetangga. Dan saya merasa sakit hati, merasa rendah diri kepada diri sendiri, kecewa dengan diri sendiri. Kenapa saya selalu direndahkan, dijauhkan, dan diejek dengan teman sebaya?
[Hanisa]
She said that her mind is occupied with thinking that all of her friends, her peers, don’t want to get near her, and she cannot interact well with her peer group. All of the friends keep putting her outside of the circle.
[Stephen]
I could see that, and obviously I’m not like a medical expert, but I thought some of the medication for epilepsy could be very strong and that it can do a lot too. This makes sense. It’s unfortunate that this has been isolating you in this way. What helps you feel connected with others?
[Hanisa]
Jadi apa yang kamu merasa kamu merasa terhubung dengan orang lain tuh apa yang kamu apa yang bisa merasa terhubung kayak apa yang maksud saya merasa
[Bela]
terhubung dengan orang lain mulai dari berobat seizo ini dan saya mulai percaya diri setelah minum obat penyakit kizo ini dan saya jadi percaya diri untuk bersosialisasi kembali dengan teman sebaya saya dan saya ikut bergabung di komunitas KPSI. Saya merasa bangga dengan diri sendiri dan saya juga senang bisa berkumpul dengan teman-teman yang lain seperti Mbak Hanisa dan teman yang lain. Karena saya suka dengan teman yang pengertian, mendukung satu sama lain dan bisa apa? Mendukung belajar untuk mengenali penyakit mental.
[Hanisa]
She said that felt connected now especially with people in [the mental health support group she joined] like me [Hanisa] and the other friends here because she likes it when people around her are understanding. The people around her can support each other in their own way like that, and
said she likes it. That she can learn a lot from joining this community.
[Stephen]
This makes sense. What have been some of the biggest things you’ve learned in this community? And maybe for context for anyone watching, she’s referencing a community here in Yogjakarta that has people with different kinds of mental health issues whether it’s epilepsy or other things, and they come together and try to kind of talk things out like a small group community support.
[Hanisa]
What was the question?
[Stephen]
Oh, I’m sorry. The question was: How have you been growing in this group? Oh, what have you learned?
[Hanisa]
Apa yang kamu jadi paling paling kamu pelajar yang pelajaran apa yang kamu dapat PKWSI selama 2 minggu?
[Bela]
Oh, masih dapat. saya bisa mengenali penyakit mental, mendapat saran dari dokter saya bahwa harus melakukan aktivitas atau kegiatan sehari-hari itu penting karena agar membantu otak untuk berpikir kritis dan bisa membantu kesehatan mental jadi sehat lagi dan push.
[Hanisa]
She likes it that she can learn from her peers. As well, she can manage her own diseases, and she can talk to the psychiatrist there and KPS as well. She likes it that way. She can grow to be a better person here in KS.
[Stephen]
This makes sense. I’m glad that you have this opportunity. It seems like you’ve been disconnected from so many other people because of this condition. I guess one other question I wanted to ask: Given what you know now, is there anything that you would have done differently if you could go back in terms of how you kind of processed and handled all this?
[Hanisa]
Kalau kamu bisa masa lalu, adakah hal yang kamu pengin ubah? Dari situ eh dari situ sekarang kamu gimana?
[Bela]
ingin mulai belajar dari awal lagi. Seperti belajar di waktu SMP, SMA itu saya rasanya ingin mengulangi lagi karena saya seperti merasa kurang ilmu saja dan saya besok tahun depan ingin kuliah di kampus impian dengan dari pihak Yakum. H dan semoga saya bisa diterima.
[Hanisa]
So she said what she wanted to repeat. She wants to redo the time when she was in junior high school and senior high school just because she feels like the knowledge she had wasn’t enough, and she is planning to apply for college in the near future, by the support of Yakum, from that organization. She is hopeful that she can be accepted with courage.
[Stephen]
I hope I hope you get that too. That would be awesome. And I also think like you for many of us myself – I was like this – college can be a time that we can kind of redo a lot of the aspects of either high school or middle school that we would have done. It’s an opportunity to, on some level.
[Hanisa]
Jadi, kamu bisa ngulang lagi yang kamu pengin pulang di SMA, SMA kamu ngulang pas kuliah. Jadi kamu bisa lakuin itu pas kuliah. Jadi itu jadi ada kesempatan buat kamu tidak bisa mengekerien yang kamu experience SMP SMA bisa experience kuliah.
[Stephen]
I have a final question, but it does have two parts. The first part is what would you recommend for anyone experiencing this having this starting at a young age like you. What would you recommend they do to help and help grow?
[Hanisa]
Saran dari buat teman-teman yang sama yang berak ituus apa biar mereka juga tetap bisa tumbuh tetap bisa berkembang gitu ya?
[Bela]
Sarannya saran saya untuk teman-teman yang mengalami seperti saya harus semangat dalam menjalani hidup ini untuk minum obat rutin biarpun itu perjalanannya berat anggap saja obat itu adalah vitamin dan itu bisa memulihkan penyakit biarpun perjalanannya dan waktunya lama semoga yang mengalami saya bisa sembuh pulih, dan tetap semangat untuk menjalani hidup walaupun mengalami penyakit epilepsi dan skill.
[Hanisa]
She said to all of you who experience the same as Bella. She said to keep on fighting. You can pass through that and don’t forget to drink your medicine regularly. Think of it as a vitamin so you don’t think much about it.
[Stephen]
That makes sense. I would agree with all that. It’s like I think in a case like this to take your medicine. It’s like investing in yourself. It’s like growing yourself, making sure you’re on track. So this was the second part of the final question: What would you recommend for anyone who has someone in their family encountering this or has a friend or somebody they know who is having to deal with epilepsy especially at a young age?
[Hanisa]
Kalau saran cara bu orangnya saran buat keluarganya itu apa?
[Bela]
Kalau punya seorang yang punya seperti yang insyaallah masih muda gitu kalau tidak saran saya sangat sulit dijelaskan karena ibu saya, kakak saya, adik saya tidak percaya kalau saya mempunyai penyakit mental itu mood-nya sedang naik turun karena saya dianggap seperti anak pemalas walaupun saya bisa melakukan lakukan aktivitas apapun saya kadang naik turun mood-nya dan orang tua saya tidak percaya dengan saya kalau saya itu sedang mood eh tidak mood biarpun saya bermalas-malasan, tapi saya masih tetap bisa melakukan aktivitas sehari-hari.
[Hanisa]
She said that her mother, her sister, her brother didn’t understand her and said that she was being labeled as lazy. But she didn’t think that she was lazy, just not having the mood to do the things their parents or siblings say at that time.
[Stephen]
Yeah this makes total sense. I bet I think for some people sometimes people can label something as lazy and not realize that it can just be a little harder for you to do it. Like in some people with this condition doing something for people that maybe is normally this level of difficulty for them is that higher level of difficulty for you. It just takes more work. So it doesn’t seem fair to consider you lazy for not being able to do it. It just might be that that thing is a little harder for you to do.
[Hanisa]
He itu ya hal-hal tadi gitu tuh kamuak enggak bisa kalau kamu ngesiap langsung kamu tuh malas kamu tuh gini ya karena itu itu sulit waktu itu untuk melakukan hal yang disuruh waktu itu karena memang belum kan belum pas itu kan sama waktu itu.
[Bela]
Iya.
[Stephen]
Yeah. And I did say the final question, but I do have a followup question on that real quick. If somebody knows someone, you know, in a family or friend who has this condition, what can they do to try to understand it better? You know, maybe unlike your family who didn’t always seem to understand.
[Hanisa]
Kalau dari eh kan tadi bilang kalau yang belum belum semuanya paham gitu kan.
[Bela]
Iya.
[Hanisa]
Nah, kalau misalnya sebagai berat pilihnya seperti apa? Kalau biar orang mengerti paham itu kayak seperti apa yang baik gitu kalau orang yang juga sarannya?
[Bela]
Heeh. Caranya saya sebenarnya ingin memberitahu keluarga saya kalau saya itu bisa melakukan aktivitas apapun. Tapi keluarga saya tidak percaya kalau saya itu anaknya kadang rajin, kadang suka membantu orang lain dan keluarga saya tidak pernah percaya dan saya dianggap anak pemalas kadang-kadang karena orang tua saya pulang waktu orang tua pulang pulang kerja saya masih tidur saya karena kalau tidak mood saya kerjaannya tidur dan saya mager kalau untuk melakukan aktivitas apapun jika eh walau mood-nya masih naik turun
[Hanisa]
She said that she still has an issue with trust in her family. So her parents when they got home she saw that Bella was sleeping at the time just in the bed and didn’t do anything. And that makes her parents think that it’s a thing that Bela shouldn’t do.
[Stephen]
Hm. This makes sense. How would you have liked your parents to have responded in that situation?
[Hanisa]
Penginnya kamu orang gimana kayak gitu?
[Bela]
Pengertian mengerti kondisi saya kalau saya itu orangnya tidak pemalas. Karena saya malas itu karena mood-nya saya naik turun. Dan saya sebenarnya pengin melakukan aktivitas karena ingin membantu. Tapi saya tuh terasa naik turun. Jadi orang tua saya tidak percaya kalau saya itu memiliki gejala yang lebih apa di bawah dari orang lain. Dan saya ingin menceritakan pada orang tua saya kalau teman-teman di komunitas ada yang lebih parah dari saya. Tapi saya tidak berani karena saya mungkin dianggap mereka hanya omong kosong atau bohong gitu ya. Jadi orang tua saya menganggap saya di keluarga saya paling malas ya.
[Hanisa]
She said that she doesn’t think that she’s the laziest person. That they must be really hard.
[Stephen]
Yeah, that’s really unfortunate. It probably adds insult to the difficulties you actually face on a regular basis to then have people say you’re lazy and just say that and to think about you that way.
[Hanisa]
Pasti susah pasti enggak enak Mas kalau orang yang bilang kayak gitu terus enggak gitu.
[Bela]
Sakit hati sekali rasanya. Rasanya saya ingin pengamuk tapi saya tidak berani. Saya mending diam saja menahan rasa marah, menahan amarah daripada membikin membuat keributan di rumah. Lebih baik saya diam daripada saya dimarahin, diomel-omel, dikatain yang tidak-tidak dan akhirnya menjadi masalah besar.
[Hanisa]
She said she wants to explode to her parents. She wants to say that that’s not true. She wanted to define herself but she chose to keep it by herself and didn’t say anything. But yeah that’s her from inside.
[Stephen]
That makes sense. That does sound very hard. I guess for now let’s say, “Thank you for doing this.” How would you like to sign us off? Would you like to do the peace sign or what would you like to do to sign us off?
[Hanisa]
Mau saya gimana buat kayak gantungnya untuknya gimana?
Terima kasih semuanya karena telah melihat saya di sini dan mendengar saya kisah dari remaja sampai dewasa sekarang ini. Saya ingin memberi saran kepada teman-teman semua jika mempunyai kisah seperti ini, harap diperjuangkan walaupun rasanya berat, sakit hati dan harus sabar mengalami menjalankan hidup ini walaupun memang itu memang berat bagi yang mengalami. Dan terima kasih sudah saya akhiri. Sampai jumpa.
[Stephen]
Thank you for listening and bye. Terima kasih. Thank you and peace.