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Thursday, December 24, 2015

Explosion in My Head: I'm a Writer Who Lost Words From a Stroke

I was the guy who was smoking while jogging, who drank beers while eating salad, who stayed awake at night but slept soundly during the day, who thought healthy is whatever food that makes me happy, who assumed that a balanced life meant doing whatever I wanted to do. 
Then I had a hemorrhagic stroke.


It was a bright day in Ubud, Bali. I was just coming back from my summer holiday in the US. It was one of my prodigious trips; attending a U2 concert in LA, celebrating my 35th birthday in Sausalito, having sweet and savory food tours in New York. I was busy making myself happy. I declared prematurely, it turns out 2015 was my greatest year ever.

The morning started with a vibrant sunrise. I woke up energized, brewed Sumatran coffee in my french press, danced to whatever music happened to be streaming. I opened my notebook to continue writing my next novel. I also wrote some ideas about my future projects ambitions that made my heart beat faster. Between the writings, I played air guitar while head-banging. Then suddenly I felt pain in my upper-neck, radiating to my eyes as my vision blurred and my hearing faded.

I felt like Neville Longbottom when he was thrown the spell 'petrificus totalus' by Hermione. I couldn't move my body. All my muscles suddenly lost the ability to move. I didn't think it could get any scarier, but then my capability to think also vanished. And that, it turns out, was not even the scariest part, as I discovered when the torturous pain propagated through my head and it began to feel as if the brain was being chopped by millions of razors.

I tried to close my eyes to lose my consciousness. I still hoped that everything was going to be okay during my sleep. I didn't know precisely how long I slept. When I finally woke up, my vision was twisted. I saw everything double. My brain still hurt. Those million razors were now shredding the left side of my head. I tried to reach my cellphone, typing intermittently to ask my good friends for help. I pushed my self to stand and to walk, but hell, the anguish was real.

As soon as I arrived at the hospital, the nurses took my blood and urine, checked my heartbeat,
then the bad news came with my blood pressure charts: around 200/100. The terrifying moment began with my CT scan report: there's internal bleeding in my head. My blood vessel leaked in my left brain.

The torment became ruthless. I kept asking the doctors to add dosages of pain killers through any way possible: orally, intravenously, even via my butt. But pain killers have limitation.
A doctor suggested that I lay down, keep my head horizontal to avoid the leaking blood in my brain from spreading. I ate, I peed, I pooped all with my head facing the rooftop. If there was still blood in my brain on my next CT scan reading which would be held in two weeks, they would conduct a brain surgery to alleviate the swelling and bleeding.

Because of my lack of medical knowledge and the unbearable pain, I requested the doctor to do brain surgery as soon as possible. But I went silent when I was told that one of the risks of brain surgery is having another stroke. Wait, what? Is this some kind of a stroke parade?


The doctor also reminded me to not stress. How can you tell people not to stress while their brain is bleeding?!


Blood in my brain 


I was in denial.
When I saw my CT scan, I hoped it was other patient's result. But then when I suddenly lost my memories, it was hard to deny the truth.

I was angry.
When the doctor diagnosed me with a hemorrhagic stroke, I wanted to change my hospital. The doctor concluded that the cause of my hypertention is genetic because I told him my grandma and my dad both had strokes. Well, I don't know which one is more genetic; our blood pressure or our passion for the fatty foods.

I was disappointed.
When someone said "After a brain injury, you’re lucky to be alive." But 'lucky' for me is when you live your life without any brain injury at all. In the darkest night on my hospital bed, I secretly did not feel very lucky to be alive. 


Every time someone says, “You've been given a second chance to start your life over" I feel like I've been handed a big burden. I actually appreciate all kinds of supports and positive-looking on the bright side, kind of thinking, I just have to stop thinking too much. Overthinking is like zooming in on an ant. The bigger it is, the scarier it looks. I tried harder to 'zooming out'. I learned to acknowledge the pain, to become aware of my feelings without getting carried away.

I was feeling confused and selfish. What I worried most about at that time was my career as a writer.
There were several moments when I woke up, feeling blank and empty. I lost my vocabulary. I couldn't say nor could I write what I wanted to express. I couldn't even say my name. I still remembered who I was, but I was hardly able to describe it. I felt alienated.
I easily to confused excitement with happiness. I was restlessness in highs and lows. I often let my emotions be overly affected by my outside circumstances.

I didn't care what my body really needed. My 'I-can-do-whatever-I-wanna-do-to-my-body' attitude had the consequence of making my loved ones worry and busy themselves taking care of me.

Afterward, the most terrifying question of all popped into my minds, “Will I be paralyzed?”
My doctor then gradually explained that each stroke sufferer may have a different effect from their stroke, depending on which type you have; clogged arteries (ischemic) or ruptures (hemorrhagic—my case). Its location; whether on left or right brain and how much the blood leaks.

I had no choice but to wait in agony. But my vision was getting clearer, I supposed that was a good sign. And it was! The uplifting news flowed into my ears. My second CT scan showed no more blood in my brain. I could go home. Even though my insurance claim was unfairly rejected (oh well, that's for another post), the fact that I could freely move my head was pure exuberance.


Another bliss came from a woman with a heart of gold, Ibu Robin Lim, founder of Yayasan Bumi Sehat Ubud (Healthy Mother Earth Foundation).


Me & my hero, Ibu Robin
She let me stay in her cozy house. She provided me with healthy foods that made all kinds of dishes I like the most off limits! I technically become a pescatarian with less salt and less sugar in my diet. Every time I miss sirloin steak, I remember the suffering. Probably the notion that people are motivated more by pain than pleasure is right, at least for me. I somehow have to learn to appreciate the pain as a compassionate teacher.

At Ibu Robin's clinic, I'm given acupuncture and cupping therapies and all the things that I need to recover. Every time I feel a bit of pain when needles punctured my skin, I celebrate the feeling.


I just noticed that I tend to hold my breath when I feel pain. But I've been told that deep breathing is the body’s natural pain killer. Then I keep breathing & instagramming while going through the pains!



Need more needle
Finally I began to move around again. But I walked like a drunken gorilla, I feared falling with every step I took. I didn't have enough strength to improve my physical mobility until my best friend held my hand to walk me across the Monkey Forest. I was very much enjoying the feeling of energy growings to fill my entire body. How can I live without my best buddies?

When I do the walking, my memories sometimes flicker like a remix music video. It's bewildering, I lost in my own beats, but I put my effort into enjoying this new rhythm.

The memories and the moods occasionally re-play my past self awareness. I woke up as an eight year old, thinking about geting ready for school. The other day I woke up looking for my barista apron, a re-run of what happened when I worked at Saudi Arabia six years ago.


Suck the blood out
When I suddenly remember the painful memories, I struggle to remember the happy moments. But when I finally remember, it makes me feel worse. I have to accept all of those pains are now part of who I am. I embrace bad memories as I'm given the ability to remember.

I also could remember vividly what I did in my sleep! I suddenly started to have lucid dreams.
I was amazed by green clouds above my head.
"I must be dreaming!" I realized I could control my dreams. After I was mesmerized by a weird sky, I tried to 'create' a beach with a silver sunset and pink neon sand, and it worked! I also had desired to meet my friends; they appeared in the middle of my dream!

I later found out that this is the effect of 'brain strengthening' pills that I got from my doctor.


I also had a series of awkward moments. When I need to sign documents in the bank, I fail many times to imitate my own signature on my ID card. The bank officer stare at me suspiciously, as if I'm going to forge somebody's signature.
I'm beginning to get used to that suspicious staring. The other day, I was interviewed by a magazine and I totally forgot the books that I wrote. Yes I remember the covers, but I forgot the titles. It's like you remember the faces, not the names, but in this case it's your kids you forget, not just random acquaintances. Forgive me, my books.

I'm still in denial, angry, disappointed and confused but I'm willing to get well.
I still have hard times speaking and writing well, but I want to re-learn everything, starting from zero or even minus ten.
Not all my losses is a loss, I lost 20 kg of weight in 5 months just by changing my lifestyle. More water, more walking, more vegetables.




From 128 kg, through 118 kg, to 108 kg

Everyday I watch my own numbers to beat my silent killer. No, not the number of followers, likes or other popularity figures, but my blood pressure numbers. Just forget all the new gadgets, all I care about is my tensimeter. When I'm too excited, my blood pressure rises high, and it's time for deep breathing and drinking water. 


A device to defeat the silent killer


I've been facing many challenges but I will continue to heal, to write, to love, to try and understand this new perspective.
 Exploring my own memories perhaps one of the best travel experiences I've ever had.
A brain hemorrhage gave me nightmares, but I was woken up by kindhearted people.



My year 2015 was like a whitewater rafting trip, sailing through a tranquil river to a precipitous waterfalls. I really wish to float along in a river surrounded by beautiful islands with shady trees.

***
Looking through the pain

10 comments:

  1. This comment has been removed by a blog administrator.

    ReplyDelete
    Replies
    1. Terima kasih untuk semangat dan saranmu, salam hormat buat ibu ya.

      Delete
  2. Hallo Mas Vabyo, first time I read your novel (memoar) Kedai 1001 Mimpi and Kedai 1002 Mimpi, constantly make me to do positive thing. Than I follow your social media (twitt, and instagram), I was so happy when I knew you get your breakthrough by winning a favorite writer (if only am not forget about the nomination). Then you post them, photos, there are so w-o-w you are going to USA, watching a good music, and suddenly I know why your photo full with healing.

    My pray for you Mas Vabyo, I only can do it for now. Allah knows everything, I know how it feel. God also reminds me with the same way like you do, but with different path. I got something "mag kronis" its make me also have no power, like I don't have blood preasure. its very torture, when we have many plan to do but our body denial to work with.

    Allah knows, how to remind us. becareful with our meal, and everything we do.


    Allah bless you Mas Vabyo, do the best to your healh. I pray for you every I pray to Allah.

    have a bless life Mas.

    ReplyDelete
    Replies
    1. Hello dear, I tried to find out your name but I failed. Thank you for the kind words & your support. I believe you can survive from the 'magh kronis'! Let's hang on and be strong.

      Delete
  3. Hallo Mas Vabyo, first time I read your novel (memoar) Kedai 1001 Mimpi and Kedai 1002 Mimpi, constantly make me to do positive thing. Than I follow your social media (twitt, and instagram), I was so happy when I knew you get your breakthrough by winning a favorite writer (if only am not forget about the nomination). Then you post them, photos, there are so w-o-w you are going to USA, watching a good music, and suddenly I know why your photo full with healing.

    My pray for you Mas Vabyo, I only can do it for now. Allah knows everything, I know how it feel. God also reminds me with the same way like you do, but with different path. I got something "mag kronis" its make me also have no power, like I don't have blood preasure. its very torture, when we have many plan to do but our body denial to work with.

    Allah knows, how to remind us. becareful with our meal, and everything we do.


    Allah bless you Mas Vabyo, do the best to your healh. I pray for you every I pray to Allah.

    have a bless life Mas.

    ReplyDelete
  4. Dear Kak Vabyo,
    Entah mau mengawali dengan kalimat apa tetapi sebagai seseorang yang bersikeras mengikuti jejak langkah Kak Vabyo, seorang penulis sukses... saya merasa sedih mendengar kabar Kak Vabyo terkena Stroke.
    Saya tau Kak Vabyo akan berkarya sampai mati, dan saya yakin buku Kedai 1002 Mimpi pasti tidak akan menjadi buku pertama dqan terakhir yang saya baca.
    Jujur saya mengenal seorang penulis sukses Valiant Budi @Vabyo baru akhir tahun 2015, sebenarnya saya beli buku Kedai 1002 Mimpi di tahun 2014 tapi baru saya baca akhir tahun 2015. Dan setelah selesai membaca, saya putuskan untuk menjadi penggemar setia karya Kak Vabyo.
    Kak, hari ini saya ada masalah tentang karir... saya menangis, dan saya tutup muka penuh tetesan air mata di pipi dengan buku Kedai 1002 Mimpi.
    Tanpa sengaja saya membuka buku halaman 270
    "Ah, Tuhan Maha pembolak-balik ya"
    Kalimat kakak tersebut membuat saya tersadar.
    Alasan mengapa saya tersadar akan saya sampaikan langsung jika Allah memberi kesempatan saya bertemu dengan Kak Vabyo.
    Terimakasih dan cepat sembuh ya kak !!! agar bisa tetap menginspirasi jalan karir saya kedepan yang mengikuti jejak langkah Kak Vabyo :)

    ReplyDelete
    Replies
    1. Dear Elly, semoga segala masalahmu segera teratasi ya. Saya senang kalau sepatah kataku bisa bantu meredakan gelisahmu. Terima kasih untuk doanya ya!

      Delete
  5. Ngeri banget ya bud apa yg harus lu alamin dan lewati,smoga otak dan fungsinya semakib membaik,sama sekali ga kebayang apa yg harus lu alamin di tempat yg jauh dari keluarga,saking takutnya gw mulai berusaha utk rutin jalan kaki tiap minggu dan mulai ngurangin konsumsi makanan yg berisiko karena gw kudu sehat buat anak anak gw dan bini gw.Sedih baca pengalaman lu tapi ternyata bisa membuat gw mulai berubah.Makasih ya bud,maaf belum bisa bantu apapun sampe saat ini. Smoga segala sesuatunya lekas kembali normal.

    ReplyDelete
  6. Ngeri banget ya bud apa yg harus lu alamin dan lewati,smoga otak dan fungsinya semakib membaik,sama sekali ga kebayang apa yg harus lu alamin di tempat yg jauh dari keluarga,saking takutnya gw mulai berusaha utk rutin jalan kaki tiap minggu dan mulai ngurangin konsumsi makanan yg berisiko karena gw kudu sehat buat anak anak gw dan bini gw.Sedih baca pengalaman lu tapi ternyata bisa membuat gw mulai berubah.Makasih ya bud,maaf belum bisa bantu apapun sampe saat ini. Smoga segala sesuatunya lekas kembali normal.

    ReplyDelete
  7. It was a good read; you are a survivor ! I felt like I went through your whole journey from the stroke to recovery. Glad that you are all healthy now 😀 KJ

    ReplyDelete

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