Tobii and I are in a euphoric place. He is Swedish, I am Indian. You would agree that the cross cultural dynamic is always exciting. Now that I have learnt his ways, Tobii is reciprocating with great linguistic fervour...seems like he can’t wait to master my mother tongue. I type ‘gh’, he predicts go ghari gheun ghe ghai. I type ‘k’, he predicts know kar keep khali karun. If I decide to test and tease him further, which I often do, and type in two words such as “breakfast la”, he thoroughly spoils me for choice with “upma pohe sabudana besan idli dahlia” altogether disregarding that eggs is a great breakfast option. These are unpredictable times, especially for relationships, but one thing is certain - Tobii and I are going to come out of this lockdown like a good ole couple with him completing my sentences for me.
Tobii is my mom’s computer. She speaks with her eyes, he tracks her movement. She wins bridge tournaments, buys stuff on Amazon, and dominates at Words with Friends. She uses WhatsApp to say goodbye and goodnight to me. I don’t really remember what it sounds like to hear my mom speak because her voice - her ability to consciously regulate her throat muscles - was the first to go. ALS is a unique experience for everyone who has it. As a disease it has moments of platitude and calm before rapid, painful degeneration to a new plateau. Watching someone so close to you die demands that you learn how to love them better.
Come to think of it, good ole couples not only start reading each other’s mind and completing sentences, but over time, also pick up mannerisms and even start resembling each other somewhat. With me and Tobii it is more than a slight resemblance. All that’s really left of my looks resembles Tobii a hundred percent. Short term Covid lockdowns apart, those who want to be with and be there for me in my foreverlocked-down life, can do so only if they find it attractive to engage with my new look. Not everyone can see beyond the ALS warped features. Not everyone thinks it is worth the effort.
Death Cab for Cutie, commonly known as everyone’s favourite emo-rock band from the early 2000s, has a beautifully morbid song named “What Sarah Said.” I don’t know why, as a privileged, albeit clinically depressed thirteen year old, who had never experienced death, I listened to the words over and over again, “Love is watching someone die.” But Ben Gibbard was right then, even before I knew it. This is exactly what love is: watching someone die and being unable to throw yourself in front of fate saying, “Take me instead!”
And really, he also gave me a useful framework for evaluating love in my friendships, because a lot of my friends at the time didn’t care to watch her die with me. Their parents treated her as if she was mentally handicapped, when anyone could have Googled the disease to understand it didn’t affect her mind. They spoke to her awkwardly; as she lost her speech and had to write on notepads to carry conversation, they talked over her, stilted, and never gave her the patience to write out a sentence. Often, they asked me about medication she was on, and I would have to awkwardly repeat “Whatever medication she is on is not going to cure her.” And they never asked me, “Hey, how’s your mom doing” when we met up briefly, drunkenly, after college.
I have to admit though, that I am quite besotted with him. So call him what you want… Toby, Tobin, or Tobias. It’s obsessive - as any (d)alliance worth its salt should be. But can you blame me? If someone were to calibrate HIMself or HERself to your eyes, look deeply into them and open a whole new world, would you not fall for it..?! Alas, every relationship is fraught with challenges and insecurities. Tobii is no Mac, so he does need to constantly update and replenish. He runs out of juice pretty quickly too...needs to tank up twice a day ! Honestly, a bit temperamental...freezes me out often. And definitely not the most switched on to networks. But for all the issues with HIM, truth be told, I am the insecure one here. I realise my dependency. I am constantly aware of how much is riding on my eyes being able to maintain this contact.
When we brought my sister’s body home the night before. My mom wouldn’t be able to come to her cremation, but she needed to see her daughter one more time. Tobii sent me a message later that night. They liked the choice I had made for sama’s cremation outfit. It wasn’t much of a choice. Sama’s suitcase, in a bureaucratic mess, didn’t make it to Amsterdam with her. So instead of her own clothes, she took most of mine for that semester. When I was packing up her dorm room, I was packing up my clothes, shoes, underwear. I chose the only item of clothing that I had never borrowed from her. It smelled only of her.
There is a litmus test. Everyone I meet who meets my mother undergoes it. Do they wait for her to finish writing? Do they smile at her with genuine warmth? Do they wait for her to finish her food without looking at their phone to check the time?
When I visit home over winter break, do they make me feel comfortable to talk about hospital visits and her drastic weight loss and how teary I am all the time? Do they let me say the ‘d’ word? It’s rigorous, this test, but my actual friends have passed it with flying colors- a 100% success rate. And now I can breathe again.
Sometimes her jaw gets locked into these positions where her teeth are pressing down on her lips. She can’t move her jaw but she can taste her blood as her teeth cut through soft, deteriorated skin. I just wish I remembered what her voice sounded like.
We write every day. We watch some episode of some dumb show my sister used to like. I miss her, I miss her too. I can’t believe this happened.
ALS didn’t happen to me alone, It happened to you too… just differently. This realisation, coming to terms with it daily, is the heart wrenching part. Seeing you cope with the constantly changing dynamic of our relationship destroys me. But then sometimes I want to shift focus and point out one thing to you, but I don’t know how to do this gently so I just let it be. You have to manage just the one altered relationship. I have to manage several.