Monthly Archives: January 2020

Goresan Tinta Terakhir

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Assalamu’alaikum wr. wb.

Aku ingin sedikit bercerita dan mendokumentasikan tulisan-tulisan terakhir Syva yang dilakukan semasa rawat inap di RS Premier Bintaro pasca operasi Kraniotomi yang dilakukan pada hari Sabtu, 21 Desember 2019. Selama rawat inap berlangsung, aku menjaganya hampir penuh waktu ditemani sofa yang cukup nyaman yang berada di samping kirinya. Beberapa hari setelah operasi, kondisi fisik Syva sebenarnya sempat membaik: bisa berbicara normal, bisa jalan sendiri bolak-balik dari tempat tidur ke kamar mandir, bisa jalan-jalan di sepanjang koridor RS sambil dituntun, dan bisa menulis di atas kertas.

Di suatu waktu Syva meminta untuk dibelikan minimal 4 buah buku tulis, yang rencananya: 1 untuk dirinya sendiri dan 3 yang lainnya masing-masing untuk menuliskan pesan kepadaku, Naisha, dan Rumi. Sempat terlintas dipikiran aku apakah ini tanda-tanda atau firasat bahwa dia akan pergi jauh. Tapi dasar hatiku ini yang keras dan penuh penyangkalan, aku cenderung bersikap denial terhadap pemikiran tersebut.

Dari keempat buku tersebut hanya 1 yang berhasil Syva tulis. Selebihnya belum sempat tergores dengan tinta 1 garis pun.

Aku abadikan goresan-goresan tinta terakhir Syva di sini untuk berjaga-jaga apabila terjadi sesuatu pada buku fisiknya (rusak atau hilang).

Tulisan 1 (30 Des 2019)

Tulisan di bawah ini dibuat oleh Syva di pagi hari, mencoba merekam perkembangan medisnya setelah operasi kraniotomi. Suasana di kamar RS pagi itu cukup positif dan ceria bagi kita berdua, melihat perkembangan kesehatan Syva di hari-hari sebelumnya yang juga terlihat semakin membaik. Dan juga salah satu dokter sempat mengisyaratkan mudah-mudahan bisa pulang ke rumah sebelum tahun baru.

 

Each day is a new history

Day 1 post op – Alhamdulillah I’m still alive! So I started 2 rakaat tahajud on my ICU bed. One mean nurse caught me crying and said, “Stop it, will ya! It won’t help urself doing this”. To her I replied, “I was praying, you know. It’s not even shubub. I’m praying tahajud”. These are not tears of sadness. They are tears of grateful

Day 2 post op – Alhamdulillaah I can stand up!

Day 3 post op – Alhamdulillaah I can roam around in a wheel chair

Day 4 post op – Alhamdulillaah I can walk and the corridor by my own foot, leaning to the love of my life

Day 5 post op – Alhmdh I can pooped by my own
You see, each day is a new history.
It’s all about perspective and how you appreciate all the little things happened in your life.

Day 10 post op – Alhmdlh I can still write!

Hanya ada satu indikasi medis negatif yang cukup kentara: pandangan Syva yang menurutnya terlihat ganda apabila membuka kedua matanya. Dia bisa melihat lebih jelas apabila salah satu matanya ditutup. Ini yang menyebabkan dokter syarafnya merujuk untuk dilakukan MRI scan kembali, membandingkan hasil sebelum dan sesudah operasi. Tidak lama setelah Syva membuat tulisan di atas, pagi itu aku mengantar Syva ke bagian radiologi untuk menjalani MRI scan.

Tulisan 2 (30 Desember 2019)

Di hari yang sama, pada sore harinya aku dipanggil oleh dokter syaraf untuk keluar dari kamar rawat sebentar. Perasaanku sudah agak tidak enak dengan dipanggilnya keluar, karena berarti ada hal yang harus dokter sampaikan secara privat kepadaku terlebih dahulu sebelum ke pasien, yang biasanya itu kabar yang tidak mengenakkan.

Dan ternyata memang demikian. Hasil MRI yang kedua ini jelas menunjukkan bahwa tumornya kembali membesar, bahkan terkesan lebih besar dibandingkan sebelum operasi. Namun pada saat itu dokter belum memberikan vonis apapun mengenai seganas apa tumornya. “Tunggu saja dulu hasil resmi dari biopsi, dan sebaiknya masih tetap dirawat inap di sini hingga hasil biopsinya keluar. “, hanya itu perkataan penutup yang diucapkan dokter.

Aku dan dokter kemudian balik menuju ke kamar rawat untuk menyampaikan kabar ini ke Syva.

Selama dokter menjelaskan, aku dan Syva dalam keadaan hening. Hanya saling menatap dan kemudian disusul dengan tetesan air mata.

Syva memecah keheningan dengan mengatakan: “I’m sorry”.

Lalu dilanjutkan dengan: “I’m sorry if I’m such a burden for you. Aku bisa berjuang sendiri. Kamu dan anak-anak lanjut aja hidup seperti biasanya. Bila perlu bawa anak-anak ke tempat yang jauh, yang lebih sehat. Tolong jaga anak-anak. ”

Di saat yang sebenarnya dia punya segala alasan untuk memikirkan diri sendiri, yang dia pikirkan ternyata aku dan anak-anak 😦

Di malam harinya Syva pun menulis lagi. Sepanjang malam aku sendiri hanya melamun dan merenung, kenapa hal ini bisa terjadi padanya. Apa yang memicu adanya tumor di kepalanya, yang sepertinya bukan tumor jinak berdasarkan hasil MRI scan terbaru. Kenapa aku tidak bisa menjaganya dengan baik selama ini.

Asslmkm wr. wb.

I have a monster inside of me which I can’t control, unfortunately.

But do you know WHO has the unlimited power, WHO is the best of the best controller, WHO has everything in this world within His reach?

He is Allah The Almighty. My one and only God, whom I love so dearly.

I believe one day, He’ll kill the monster for me. Insya Allah. You just wait and see.

Asslmkm wr. wb.

Don’t pity them, don’t pity me.

I know some of you would say.

They’re just 7 and 3, and she’s only a couple years over 30.

Don’t pity them, don’t pity me.

Just keep us in your prayers every day, endlessly, effortlessly.

It definitely means so much to me.

Tulisan 3 (31 Desember 2019)

Sesuai perintah dokter, kita masih lanjut berada di kamar inap, di hari yang sebelumnya kita harapkan untuk bisa pulang. Di hari itu aku hanya mencoba bersikap normal, berusaha terus menghiburnya, dan optimis kalau dia akan sembuh.

Namun aku dapat merasakan sekali mood / keadaan emosinya yang bercampur aduk. Syva masih menyempatkan untuk menulis di sesi-sesi terpisah, yang menggambarkan penggalan-penggalan apa yang dia rasakan di hari itu.

Asslmkm wr. wb.

The day I knew I still have thing 2.

It was not easy to describe.

All you need to know is that I cried even more than the day I found out how much Snape loved Lily & Harry.

Asslmkm wr. wb.

They keep saying “your wound dries great”, “your headshapes better now”.

I kept thinking “I nailed the surgery”.

But who am I kidding.

The result was never up to me.

“Don’t you remember, Syva? Allah kicked out Iblis because of their arrogance?”

Asslmkm wr. wb.

I’ll stop crying today.

I’m a fighter.

I’m a survivor.

But fighters & survivors do cry too, don’t they?

I’m still crying at the moment.

But I promise I’ll stop crying later, today.

When I see myself in the mirror.

I no longer find my long black hair.

I don’t even remember how it looked before.

But that’s okay.

As I said to my best friend, getting bald is the last thing I’d worry about the surgery.

When I see myself in the mirror

I always hear Christina’s song

“You are beautiful, no matter what they say

No words can’t bring you down.

Don’t you bring me down today.”

When I see myself in the mirror.

The one thing popped out in my mind is “Dear head, why did you bring me down, today?”

But again, another song came out.

It was Destiny’s Child,

“I’m a survivor. I’m not gonna give up.

I will survive, I’m gonna work harder.

I’m a survivor, I’m not gonna give up.

I will survive, I’ll keep on surviving.”

You are the Renesmee to my Jacob

You mesmerize me

You are the Lily to my Severus

You are my only reason

You are the chair to my Sheldon

I can’t live without you

You’re the klopp to my kopp

You helped me win everything big in life which all came down to one grandeur priceless prize.

The great honor to be called Mummy by both of you

You are the Dongbaek to my Yong Sin

You make my life bloom

You complete me dear love, Naisha & Rumi.

I’ll be healthy for you. I’ll fight for you.

Tulisan 4 (3 Januari 2020)

Tibalah kita di hari vonis: pemberitahuan hasil biopsi. Waktu dimana yang selalu kita doakan dan harapkan agar memberikan ketenangan dan meningkatkan optimisme kita semua, yakni tumor tersebut tidak ganas.

Dan yang terdengar adalah kabar yang paling tidak ingin kita dengar: bahwa tumor yang bersemayam di kepalanya berjenis Glioblastoma multiforme (Grade IV) yang merupakan jenis paling ganas dari tumor otak. Optimisme yang sempat muncul sebelumnya pun runtuh seketika.

Setelah itu, sambil menangis Syva kembali mengatakan “I’m sorry. And I love you” berulang-ulang. Aku tetap berusaha tampak tegar dan tersenyum untuk menghiburnya, dan bilang ke dia untuk tidak perlu meminta maaf, walaupun di balik dada ini aku pun merasakan “patah hati”. Di malam harinya ketika dia tertidur, barulah aku tidak menahan lagi air mata untuk keluar sambil berbaring di sofa.

Sebelum tertidur, Syva terus memanjatkan doa. Tulisan pada hari ini sebenarnya bagian dari doa-doa yang dia panjatkan.

Insya Allah

Bersih Bersih Bersih Bersih Bersih Bersih

Sehat Sehat Sehat Sehat Sehat Sehat

Sembuh Sembuh Sembuh Sembuh Sembuh Sembuh

Kuat Kuat Kuat Kuat Kuat Kuat

…….

Insya Allah ku yakin

Aku akan sehat, aku akan sembuh, aku akan pulang

Allah akan sehatkan, Allah akan sembuhkan, Allah akan izinkan ku pulang menuntaskan jihadku sbg ibu & istri

…….

Tulisan 5 (5 Januari 2020) – Pulang

Hari ini merupakan hari kepulangan kita dari RS ke rumah bintaro. Tentunya bukan kepulangan yang menenangkan. Namun kepulangan untuk melanjutkan perjuangan kita ke tahap selanjutnya, yaitu menjalani radioterapi dan kemoterapi di RSCM.

Di pagi hari sebelum pulang, Syva masih sempat menggoreskan pena pada buku tulisnya. Dan goresan kali ini ditujukan kepadaku. Namun siapa yang menyangka ini menjadi goresan tinta terakhir darinya untuk selama-lamanya.

To the amazing man I proudly call as my husband.

I am so sorry. I thank you. I love you.

There’s not a day went by without me being grateful to have you in my life.

You’re just too good to be true. I wish I can’t take my eyes off of you. But my eyes are not so cooperative at the moment.

You are too good for me.

You don’t deserve my “now” me.

I’m broken. I’m not who I used to be.

I’m sick. But I believe I’ll be fixed.

Insya Allah

I’ll fight for you. I’ll be healthy for you.

I love you with all my heart.

Tulisan yang sangat menyentuhku dan penuh dengan cinta. Namun betapa bodohnya diriku. Aku belum sempat membalas tulisan itu dengan tulisan berenergi yang sama dengan dia tulis, yang bisa membahagiakan dan menguatkannya.

Setelah membaca tulisan itu, aku hanya merespon singkat dengan mengatakan “thank you, love”.  Aku tidak tahu apa bisa menutup rasa penyesalan ini di kemudian hari karena hanya memberikan respon tersebut. She did not deserve to have me as her husband. I should have written my love expression and got her read it. I should have given to her my full attention and not doing anything else.

Hari-hari berikutnya merupakan sejarah yang pilu bagiku sekeluarga. Tidak lama setelah menjalani beberapa sesi awal radioterapi dan kemoterapi, kondisi fisiknya menurun drastis, tanda bahwa Syva sebenarnya menanti kepulangannya yang lain. Kepulangan menuju rumah yang sebenarnya, yang insya Allah dijauhkan dari segala rasa sakit baik fisik maupun batin.

In Memoriam: Twindania Namiesyva (28 Juli 1987 – 14 Januari 2020)

Wassalamu’alaikum wr. wb.

My Bell’s Palsy Diary: 2 Weeks In

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Assalaamu’alaikum wr. wb.

In a way, I think for me, writing is a therapy. Two days ago I had a bad day, a cummulation of a bad week. Then I remember I had these kind of bad days before, and I wrote some blog posts ehen it hsppened, which I think helped me through the days. Reading the posts tod

2 days ago when I felt really down, I looked for those posts, and I read them. so glad re

The past week has ben tough. Then I remember I had some rough weeks too before where I just realized that there’s such thing as up and downs in Bells Palsy. After feeling better day by day in week 1, my condition went downhill in week 2, something that I did not know csn happen. I thought you ca only get better each day with the therapy. I know better now.

The past week (week 2) I started to losemy taste again, somwthing that I tought I already regained. I

Wassalaamu’alaikum wr. wb.


Assalamu’alaikum wr. wb.

Mr. Ghifary’s now here …

Above is the very last blog draft that Syva was about to prepare before she passed away. She started writing it at 16 Dec 2019 via her mobile phone. It’s unfinished, even the title, but I just posted it as is to reminisce about her struggle. At that time, we both still thought that it was Bell’s palsy effects, according to the diagnosis outcome that we got from a doctor in Bandung weeks before.

Although we can see that some parts of the contents are incomplete, she wrote perfect opening and closing salaam. Her habit when writing a blog post was that she always began with salaam, even before writing the title. She ever told me that that really meant to greet and pray for all the readers for their safety and welfare before everything else, showing how caring and selfless she was.

I remember that she confided her health situation to me that she got:

  • unusual headache, especially after some physical work
  • often generate typos when typing
  • loss her taste on food even her favourite ones, which was really not so her
  • moderately loss her articulation when talking

My fault that I perhaps will always feel guilty, I didn’t act proactively to further figure out what’s really going on — the fact that it was diagnosed as Bell’s palsy made me complacent and careless. I could take some days on-leave and put my full support and attention for her, could keep pushing the doctor/hospital to check more rigorously and asking for CT / MRI scan much earlier, could consult with other doctors for second opinion.

3 days later after the date when this draft was created, we visited a neurologist at RS Premier Bintaro, got her MRI scan, and found that her sickness was not just Bell’s palsy. It’s something much worse, a little monster in the right side of her brain that is notoriously very stubborn to fight against.

Obviously after that she did not get a chance to operate laptop or only interact with mobile phone in a very minimal occasion so that she could not continue any blog write-up.  And the rest has been a fate that we must accept, although it’s very hard. She still managed to scratch and write though, but with paper and pen. I plan to document some of them in this blog as well some time later.

My takeaway on this is that please give a full support and attention for your love one when he/she really needs it, especially related to the health. Keep being skeptical for any health diagnosis outcome. Being a man, I cannot be so careless like this.

Wassalamu’alaikum wr. wb.

To my wife sent from and back to heaven

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Assalamu’alaikum wr. wb.

Hi, I’m Ghifary, the one whose name is embedded in this blog but never left any single word before here although my late lovely wife, Syva, the main author of this blog always encouraged me to write and share stories from my perspective. But I kept being selfish, stubborned, and reluctant so it never happened… until Syva’s gone for good from this world.

To continue her legacy, I’ll try my best to be the main author of this blog and to post regularly here, with the same spirit as hers: share simple stories while you can. Those could mean a lot for other people although it might seem trivial for you. She always reminded me not to be too overthinking and too focused on “my stuff” — I’m used to writing through https://ghif.github.io/ or https://ghifar.wordpress.com/.

I’m now in great grief and sorrow since her passing. Perhaps writing here could help me as well as a therapy to go through and live with it.

Since the author changes, the writing style and content are not gonna be the same anymore– heck, my life is not gonna be the same as well. So I’m sorry for readers who still expect Syva’s style.

Let me start my therapy by posting a note that I wrote for her, the shorter version of which I posted in instagram a few days ago: https://www.instagram.com/p/B7ZU_nKhe4_/?utm_source=ig_web_button_share_sheet.

The following is the original one.


Hey love, I hope that now you are in a peaceful, safe and the best place ever, since Allah is now taking care of you directly.

It’s been only about 8 years and 9 months I spent time with you raising a family with 2 lovely kids, much much shorter than the time since the last time Liverpool FC (a football club that you’re crazy about) won the premier league.

Despite the very short time, it was the most beautiful moment in my life. I still remember vividly the moment when I went to your parent’s house for the first time, when we got married, when I hastily picked you up at Wellington airport to start our new life in NZ and to show you how cool Wellington is, when we wrote some songs together, when we went to our favourite parks and beaches, and many more. Then we came back for good to Indonesia, but it was not in my slightest mind that it’s also the moment you came back for good to The Creator not long after.

To me you’re not only my life partner but also already part of my soul. You’re the most loving, caring, cheerful, and selfless human being that I have ever known, to everyone without exception. I cant imagine how bad I could become as a person without you on my side. You always reminded me not to be selfish and to always share with others whatever advantages or privileges we have, and be grateful.

You had many goals that you wanted to achieve, but they’re always not about you. You wanted to replicate NZ early childhood playcentre concept in Indonesia so that more kids can have playgroup-style education for free. You wanted every stuffs to be eco-friendly to save the earth. You wanted that every new mom after the delivery goes with ease by providing free foods.

One that made me always touched was that you said, “my most important goal is to help you achieve your goals”, which was my fuel to live my life to the fullest. Even when you’re struggling with the little monster in your head, what you cared the most were me and the kids. Look how selfless human being you were.

What does it feel like without you now? I won’t deny that I’m in great grief. Whenever I try to redirect my mind to something else, there’s always you but I can’t reach you. The sweetest memories become the most bitter ones. So many regrets and what-ifs come up. What if we stayed in NZ longer for healthier environment. What if the little monster could be detected and cured earlier. Why I couldn’t be with you and said a proper goodbye and expressed how much I love you during the last minutes of your life.

I’m really sorry if I could not be a good husband for you. Sometime I could not be a good listener when you needed me to talk to. I regret that I did not express my love to you as much as you did to me. I’m so sorry if I did not treat you well.

But we who remain here longer than you must stay strong. We will try to rise up and move forward to get busy living rather than busy dying. Following your life principle, we should be grateful to whatever comfort we have and stay grateful even if it goes away, and believe that there will be better things to come.

You left us with a great legacy. Your life and writings have inspired so many people. You’re so loved such that we don’t stop receiving love and thoughts from everyone before, now, and then. Many people ran for you to finish another 5K running session that you wished to complete last year #5kforsyva.

You should be very proud with yourselves for what you have achieved in your life. I am and will always be a very proud husband of yours. Naisha and Rumi are and will be very proud to ever have a mom like you.

Your spirit will always live in our heart and thoughts. We will try our best to continue your legacy and the good deeds you did, and to complete your unfinished goals.

May Allah grant you jannah.

Innalillahi wa innailaihi rojiun. Rest in peace my angel, Naisha’s and Rumi’s mom sent from heaven

Twindania Namiesyva binti Goenarso (28 July 1987 – 14 January 2020)

Wassalamu’alaikum wr.wb.