My once-vibrant husband died of ALS, and my  complicated grief is deep

The Washingtomn Post

Democracy dies in Darkness

By Maya Vijayaraghavan

October 27, 2019

On Jan. 1, my husband asked me whether he would die that year. I said no. It happened to be my birthday, and I wanted to feel jubilant despite the tragic turn of events in our life.

I thought Rahul might have another year, that he might beat the odds of dying this year. In other words, his hazard ratio was favorable compared with someone else in his situation. He liked talking about something related, hazard scores — a composite score of one’s genetic risk for a particular outcome such as diagnosis of a disease. It was his thing as a neuroscientist-physician. He developed one for Alzheimer’s disease, and was on his way to developing one for amyotrophic lateral sclerosis (ALS), the disease he had been studying even before he got sick with it. In reality, he had declined significantly since his diagnosis of ALS two years prior.

First, he lost his speech, then his mobility, and very quickly breathing became a struggle. But any talk of decline came with an acceptance that his life was imminently finite, and neither of us were willing to accept that outcome. But Rahul did die, six months after that conversation.

I remember some of our last conversations, when things were very difficult. His forewarning that this existence with him teetering at the brink of life and death was much easier than the life I would lead as a widow, raising two young children.

I think neither of us really understood that the emptiness I’d feel would be soulcrushing.

That I would cry all the time. That I would miss him so much. That I would become a ghost of my former self. That this thing they call complicated grief, in which healing doesn’t occur as it’s supposed to, and which supposedly happens only after a year, is something that I feel now. That I would think constantly about the time when my husband was first diagnosed and he got into a fight with our then-3-year-old (now 5) about how he could not carry him because he did not have the strength to and not because he did not want to. That I would have nothing to say to my youngest (now 3) when he is confused that if “appa passed away” then who is his “daddy.” That I knew how much Rahul wanted to once again carry them both on his shoulders, hug and kiss them, and never let them go.

That I would think painfully of how we would never again work side-by-side, across our dining table both immersed in our science. And that with a sideward glance at his frozen body I would see him looking at me; a look that was timeless and enough to convey that he loved me forever. No matter that he could no longer hold me or say it in words.

It does not help the grieving process that I am a highly functional person. In fact, I find it a betrayal of my inner broken self. What I really should be is a mess of a person heaped up on the floor, with no distinction between detritus and self. Instead, I wake up every morning at 6 after having slept minimally the night before, get dressed, make my children lunches, drop them off at school, pick them up and be their everything; review for my internal medicine recertification board exam (no matter that it takes me a whole day to get through subject matter that I would, in my previous life, been able to complete in a half-hour); try to write scientific papers with my research team; complete the endless tasks of informing every single government body about my husband’s death; tackle rodent problem in my backyard; and yet feel completely disconnected from this world.


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