She went to Battle and won the War
“Her enemy was hereditary!”
“I’m fine,” is the automatic response I receive when asking how she is.
“Not too bad,” is the response when I ask about the pain she’s experiencing.
I know she is lying!
I see her barely holding on to life as she knew it. Between the pain, the sleepiness and the despair are glimpses of unimaginable strength: strength cultivated from the years of pain, trauma and heartache.
I see the fine tremors in her hands as she tries to hold a cup of tea. She attributes it to feeling cold, and I nod in agreement.
My mom has a severe (chronic) case of AS (Ankylosing Spondylitis), inflammatory arthritis affecting the spine and large joints.
About AS:
The condition is more common among men and usually begins in early adulthood.
The disease affected her spine, hip joints and legs when I was a year old. She was 22 years old at the time, and medicine was not as advanced then as it is currently. The doctors told her to “take it easy” with exercising. (The very thing she should have been doing to maintain suppleness of her spine. Her spine then “locked into place,” and she lost movement. As a child, I knew my mom as someone who had constant pain and walked with a pronounced limp.
She was never “disabled” (even when children teased me about my “crippled mother” because she continued with her life and did everything she was able to.
Going to war:
She led a busy life with an inner strength I have long admired. Yet, like a soldier in the trenches, pain sometimes became too much. Often, at night, I would hear her cry and even as a child, I knew the pain had become worse. That did not deter her from continuing to live her life. She was a beautiful, young, divorced mother of four children. A high school teacher actively involved with her pupils and their welfare. A person who encouraged me and others to believe there was more to life beyond the poverty-stricken neighbourhood. I can’t recall if she ever stayed home or called in sick.
She was on a mission to live her life to the fullest.
When I was sixteen, she had an operation (experimental in our country at the time) to replace her hip, which had virtually no cartilage; it was supposed to improve her ability to walk and lessen her pain.
At first, it seemed to do just that, but a few years later, we (her children) noticed that her limp had become more pronounced, and her hip (the plastic one, as we called it) was much larger than the other — it jutted out from her tiny body, and was much higher than the other one. We didn’t understand at the time that the disease had progressed. Instead, my mom, being the person she was, was grateful that she was “chosen” for the surgery and never complained much.
As the years went by, I saw a change in her walk and the pain she experienced increased. Whenever she attended the hospital for her regular check-ups, she was told, “there is no cure for her condition,” so she never looked for one. Instead, she turned to faith even more, and life continued. She worked, socialised, and held fundraisers for her pupils so they could experience life beyond the confines of the places they were living in due to Apartheid. She conducted extra lessons for pupils struggling with English and History and provided them with an opportunity to do better.
Emotionally and mentally, was where her strength lay. While the words “I’m fine” became her regular chant.
At the age of 56 years, she decided she wanted to teach in the United Kingdom. People scoffed at her as she was much older than other teachers hired, and her “limp” was also more pronounced.
Armed with a positive manner and determination, she ignored the naysayers and continued her employment search.
The family and friends were divided over her decision to go — some people encouraged her, and others thought she was delusional and had unrealistic expectations.
My mom taught in the UK for three years. She did what people said she wouldn’t be able to. She loved it there, and some pupils cried when she left. I read some of their notes to her. It wasn’t surprising as she loved teaching and knew how to engage students to make learning fun.
As she became older, her mobility became increasingly difficult to manage. The crutch at the side of her bed became her regular companion, and the pain was like a second skin. She lost weight and became very fragile.
While ageing is part of life’s processes, chronic pain from a debilitating disease isn’t.
She learned Spanish and was busy with Italian when she could no longer sit up.
Yesterday, I went into her room and the frail person I greeted was almost unrecognisable. My heart broke as I saw visible suffering. I was sad that the pain had not left her- that it remained with her throughout her adult life.
After her bath, I rubbed the oils onto her legs, and she winced as I touched her, even though I was gentle.
The battle was won:
The fragile state of her body as she barely moves was deceptive because her will was unbelievably strong. As I spend the remaining time with her and try to make her as comfortable as possible, I am overwhelmed with gratitude.
I am grateful my mom has been there as a mother, father, friend, guardian, teacher, leader and motivator. I am fortunate because I have her, and though I know I could never repay her for all she has done, caring for her during this last phase of her life makes me feel worthy of being her daughter.
My mom embodies strength beyond the physical, despite her constant pain.
The physical pain she suffered throughout her life can’t be measured, much like the positive attitude she wore, like a badge of honour. She won the war when she set out to battle a disease she knew little about
I am a queen, a warrior, who could only hope to fill her shoes, walk in her footsteps and proudly do justice to what she started.
My mother deserves an award for bravery.
