Finding Beauty in the Silent Moments

My mother held me close and told me that until the day she is destined to leave this world, she will always look after me. As I lay in the hospital bed, being rushed to the ICU, battling a severe lung infection and on the brink of paralysis, I found solace in her unwavering love. It was then I understood, with a clarity, that even the darkest days can be brightened by the endless love of a mother.

It began 3 years ago; when I started to feel sick, and my blood count was severely abnormal. Faced with uncertainty from the medical professionals, I found myself forced to make life-altering decisions on whether or not I wanted to undergo chemotherapy based on a possible diagnosis of cancer. Decisions I was too young to make at the age of 13, which would ultimately determine the outcome of my future.

What began as a potential cancer diagnosis soon morphed into a battle against bone marrow failure, which in turn could cause organ failure and an increased risk of blood cancer. For the next 18 months, I was caught in a relentless cycle of doctor's appointments, tests, and medical interventions, as specialists tried to untangle the complex web of symptoms I was experiencing.

Amidst the testing, my body started to develop a functional neurological disorder that caused up to 18 seizures a day. School became a distant memory as I found myself confined to the hospital bed. Struggling to accept my new reality, I entered into a cycle of depression.

Being a young girl, isolated in a cancer ward due to my compromised immune system was more than I could handle. Hearing the screams of children dying, families shrieking, and being down the hall from the morgue, traumatised my younger self and I prayed for this endless pain to be over.

I lost friends who couldn't grasp my new reality, family who were too busy to be there for me, and the passion I once had for my education and my dream of becoming a cardiothoracic surgeon slipped away. It was a struggle, a cycle of grief and depressive episodes that took a toll on my physical and mental well-being.

Over the years, my mental health improved and for that, I am grateful for my religion. The peace of my religion was the only thing that helped me accept my new reality. I learned that life didn’t stop just because I was in pain and to focus on the things I could achieve despite it. I needed to look beyond the boundary and see the greatness that lies ahead.

I found moments of joy in the presence of my mother, who stayed by my side, dancing and singing Somali songs to bring a sense of normalcy to my hospital room. I thought about the things I wanted to experience, the books I wanted to read, and the family I longed to see.

I still battle with severe fatigue, seizures, and paralysis. I miss the freedom of not being confined to a bed, of not having to sacrifice experiences for the sake of my health. I miss carrying out basic tasks and waking up without pain. But amidst the struggle, I find gratitude for the simple things, like lifting my head off the pillow, taking a shower, and the ability to pursue an education or take a walk unaided. Knowing I've given my all each day helps bring me peace.

My advice to others facing similar battles is to be patient and find reasons to smile. Trust that your suffering will be rewarded in this life and the next and to remember that there is beauty to be found even within the pain and that you are the existence of the in-between.

I am proud to be reclaiming control of my life through my poetry and my podcast, providing a platform to give a voice to those with chronic illnesses. It's a journey of resilience, and I'm determined to keep fighting.

My name is A. I suffer from Bone Marrow Failure, Functional Neurological Disorder, and Arthritis. This is my story.

Podcast: @thechronicconversationpod