I was staring blankly at my screen, fixing this report, when a notification popped up. It was Mom—she said that Eyang’s condition had plunged. I packed for three days and drove to Bogor in a heartbeat. It was the evening a day before Bapak’s death anniversary and I remember having a bad feeling about it. Seeing the road with all the tears in my eyes was difficult—on loudspeaker, my best friend told me to let it all out.
Little did I know, it was barely the beginning of a slow and painful journey called ‘having to watch your loved one lose herself to a chronic disease’.
The first two weeks were pure chaos. We found out that Eyang’s level of toxin shot through the roof because her kidney practically stopped working. My brain was kind enough to spare me from recollecting every little upsetting details, but memories of the ambulance rides (where Eyang won’t let go of my hand), the crowded emergency wards (a mother gave birth that night), and the high care unit room (with their aircons on full blast) remain.
I remember having to make a lot of medical decisions that week—small ones at first (like putting a nasogastric tube to feed her), but peaked at whether they should place a central vena cathether required for hemodialysis treatment, with a possible risk of complication.
The hardest part about trying to do right by her, is defining what right means in the first place: keeping her alive longer, making sure she’s comfortable, trying to decipher what she would want when she was literally too weak to speak.
I remember the shock that went through my spine, imagining the possibility of losing Eyang. I definitely wasn’t ready back then—not after losing Bapak a year before, and being left by Wikan just a few months after that. I remember fearing the pain of losing, perhaps more than losing itself.
I also remember not feeling like a granddaughter but a parent, not only to Eyang but to her son and daughter, who probably were just as worried but didn’t share my overthinking brain. I remember crying a lot, feeling like there’s a new weight on my shoulders I never meant to carry.
In between, I remember feeling grateful for having Pap, Kakak, and friends who got my back through it all.
The storm subsided a bit when Eyang started regaining consciousness and explicitly asked to go home, leaving no room for her caretakers to second-guess (how thoughtful of her). At home, she asked us to gather around her bed, thanked and apologized, before going on parting some wisdom (“Jadilah orang berguna untuk sesama. Kalau cari pasangan, jangan cari yang ganteng aja tapi yang kaya juga,”—HAHAHA sempet-sempetnya, Eyang).
That maghrib, the whole family prayed together, and I led one thanking God for letting Eyang into our lives, making us into the people we are today, touching our hearts in her own special ways.
In the next few days, a stream of extended family members visited, wishing her well. It was quite special to witness and get reminded of how she lived a full life, how much she was loved by others. By the end of the week, she said something like, “Kayaknya di keluarga lain nggak ada yang sesayang ini deh (sama Eyangnya)…” which warmed all of our hearts.
It felt like (for lack of better words) a new normal for a bit, until one by one, the family members were hit by omicron. The virus got me too, eventually, which sent me home for a few days. But more worryingly, Eyang tested positive as well. I naturally panicked when we first found this out, thinking that this was it. It thankfully wasn’t, but that next few weeks was a mess regardless—she was coughing a lot, could barely sleep, all the while we still had to take her to the hospital twice a week for 4 hours of hemodyalisis. It might not be as intense of a mess, but definitely bigger in size.
I quietly sensed that everyone was slowly losing themselves in taking care of Eyang.
Routines permanently changed, work felt profoundly arbitrary and minute. All the stress, worries, and secondhand pain also brought out the worst in us. There’s at least a couple times when I snapped, yelled at another family member across the hospital hall or the family room, not able to hold it together. I didn’t feel like myself and I hated it.
It also came with a mountain of guilt when I feel like I wasn’t a good enough granddaughter. Every time I had to leave her for work, an offline meeting, or even to take a break and spend some time for myself, it felt like I was doing a crime. It gave me a lot of anxieties and affected my sleep.
(It just so happened that I did a terrible blunder on Twitter which got blown out of proportion during this period, which made things a thousand times worse.)
Before I spiraled back into the dark hole where I lived for a good chunk of time last year, I started seeing a therapist again. My goal was to better understand what’s going on in my mind—making peace with the voices in my head definitely wouldn’t hurt—and primarily trying to better understand what it is that I actually need and want.
I had quite a few breakthroughs in those sessions (in case someone needed to hear this as well):
First, I learned that I kept feeling guilty because nobody ever told me that I’ve done enough. Growing up, Mom was the main breadwinner in the family (I now overtook that role), and I might have inadvertently picked up hidden social cues in terms of what ‘enough’ looks like for a woman. Whenever Mom was home in the weekends, she would do the extra miles of taking care of the family, all that after working nonstop during the weekdays.
My therapist wondered if my dad ever told her she’s done enough. Have I perhaps copied her guilt, and general lack of self compassion?
Second, I need to understand that it’s okay for me to take a different role in the family. Think of the family is a soccer team, or maybe a company, my therapist said. Someone has to play offense, others on defense, and one of us definitely has to be the goal keeper. In a company, the CEO, staff, and janitors do different things, but it doesn’t mean that any of them is better than the others. They simply cover for one another. In my family, I might not be able to stay with Eyang 24/7 (what I primarily feel guilty about), but quitting my job to do that wouldn’t be how I could best help her either—in my own ways, providing for my family might just be exactly how I could be the most useful.
On a less relevant note, my therapist told me that I needed to decide the kind of life (and partner when it comes to it) that I want and deserve. I might have been struggling with intimacy, with letting people into my life, and on the flip side, where I mindlessly let anyone in. After the divorce, and now Eyang, there is a huge risk that without properly processing the trauma, I could make stupid decisions that might end up actually hurting me.
Just like in picking mangoes from a fruit stall, she said, I shall set some criteria that will guide me in better understanding the mangoes that are good for me, filtering the ‘bad mangoes’ out, or at least having better awareness when I had to make a compromise across tradeoffs. It was also supposed to be a way to capture the lessons learned from what things didn’t work with Wikan. It is still not very clear how this would help me in helping Eyang—maybe rather indirectly—but took a good hour to sit down and come up with this wishlist and it eased my mind a little.
It has only been two months since that initial text from Mom, but it felt like a long, winding year already.
All in all, I am quite grateful to have the support system without whom I would have easily cracked under all the pressure. Despite the major turbulences, in general I feel quite centered, and finally well-calibrated to take on whatever possible scenarios moving forward.
Today, Eyang’s condition is stable, except that parts of her brain that control memories and motor were recently affected. The family has agreed that for us the priority is to keep Eyang as faraway from pain as possible, to keep her comfortable, and to give her what she wants—and more importantly: to always make her feel loved.
Just a few hours ago I found out that she might have lost her memories of me (didn’t respond to “Ini Nenk Dhyta,”), but to my surprise I felt okay about it. I’d like to think it stems from all the work I’ve put to find my center in accepting the universe’s curve balls—although there’s a slight chance that I’m simply in denial. Whichever one it is, I surely hope that what my dear friend said holds true:
“Rest assured that her memories of you and how much pride and love she has derived from your being there for her has already been permanently etched in the aeons.”
Mohon doanya yang terbaik untuk Eyang <3
Stay strong and I hope all is well!