WORDS ARE NOT ENOUGH
Maya Vijayaraghavan’s husband died of ALS, but the grief is very much alive.
Maya Vijayaraghavan is coping with raw grief from the loss of her husband, Rahul Desikan, earlier this year.
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 favourable 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 soon breathing became a struggle. But any talk of decline came with an acceptance that his life was imminently finite, and neither of us was 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 soul-crushing. 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-threeyear-old (now five) about how he could not carry him because he did not have the strength to and not because he didn’t want to. That I would have nothing to say to my youngest (now three) 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 six 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 a rodent problem in my backyard; and yet feel completely disconnected from this world.
I wonder what he would have done if he were me?
Would he have written more scientific papers? (Probably.) Would his first paper have been about grief, or would it have been about clinical trial criteria for diseases like ALS ? (Likely the latter.) I try to be my husband by nibbling on my kids’ toes or sneaking some gummy candies into their snacks. (He did both.) And what would he have done to be me?
I have received so much kindness. It is overwhelming sometimes. Words come pouring out of people, and I wish that I was the proper receptacle for all of these beautiful emotions. Because being open to these emotions means accepting your loss. Something that I am unprepared to do now.
Words are all we have when we talk about grief, and yet they completely fall short.
I have been on the other side. I’ve talked to my patients who have lost their loved ones to cancer or heart failure or suicide about how sorry I was for their loss, that we have therapists available to talk about grief, that isolation would make it worse, that routines are important, so on and so forth. It’s all well-meaning and practical, and yet, now I see, off the mark.
What I will now say to my patients who are trying to cope with grief just like I am is that no words can make this feel better. That with healing also comes loss, because with each passing day, as the acuity and rawness of the loss starts to wear off, so, too, does the memory. Even though it is so painful, that acuity and rawness keep the memory alive a little bit more than that healed memory. And that they will need to learn to live with their new broken selves. I will also unabashedly cry with them for their loss.
I know one day I will heal and my children will heal, too. My grief will no longer be complex, as I see it now. We will see Rahul come alive in every aspect of our lives. But as I mourn the loss of this man who was to be my life partner, that’s almost too painful to think about.