I always imagined that grieving over a loved one would be a very perceptible moment in time. I was under the false impression that it would be something that could be measured, that the grief would have a defined beginning and an end. That it would only last for so long, whether it be weeks or months, or longer. That it would be an overwhelming emotion that would eventually pass.
Yet now, on the second anniversary of my mother’s death, I think that I have started to realize what grief truly is. Or rather, I have come to understand how my grief has manifested itself within me.
Instead of it being a punctuated emotion, my grief is more like a million shards of glass that have seeped into every part of my being.
I have also come to the realization that while my grief metastasized in October 2017, it actually began in the summer of 2009. My mother’s diagnosis of Progressive Supra Nuclear Palsy (PSP)was exactly when I began to mourn her eventual loss. Yes, she would continue to fight the horrid and relentless disease for eight defiant years, but still – I grieved. Those who have been handed down similar sentences of “lifespan expectancies” will understand this choking, suffocating emotion.
You begin to chart the course of the disease. As with all progressive conditions, you start to do the guess work. Mapping symptoms, charting where your loved one stands. Swallowing issues? It’s okay, they can still talk. Voice gone? No worries, still no aspiration. Vision obliterated? Still responsive and alert. The voices, the negotiation inside your head, it is all an endless fight against the inevitable unknown.
And all along , unbeknownst to me, this was my grief. This was me mourning the eventual death of my mother. When she was admitted to hospital, where she would spend the last three weeks of her life, the triage doctor pronounced the diagnosis: pneumonia.
Up until that point in time, I had been poised, collected, extremely pragmatic and forever hopeful. I was a rock. I had to be. I was Mama’s rock, and I knew she was depending on my fortitude. For eight years, my resilience was my armor.
But I also was well aware of what this diagnosis meant, and I knew that my grief would be catapulted into real time very, very soon.
So I cried. For the first time, I cried and cried and cried. In the emergency ward of AI-Amiri Hospital, I was already mourning the impending, ever-nearing, loss of my mother, a full three weeks before her actual passing.
Two years on, the grief has not dissipated, and I am not expecting it ever will.
Instead, I have learned to pick through the slivers of broken glass. I have trained myself to search for the shattered pieces and to carefully collect and arrange them. They are always with me; I proudly carry this beautiful box full of love and memories of a lifetime, wherever I go. These fragmented pieces, in their entirety, have become a part of me, and this is how I am realizing my grief.
In my mother’s memory, I urge you to consider making a donation to support scientific research in to progressive neurological conditions. For more information, or to make a contribution, please visit www.curepsp.org or pspassociation.org.uk
By Noha AI-Awadi