Scourge of scleroderma
A young reader shares a poignant account of her mother’s struggle with an autoimmune disease.
“DO my fingers look strange?”
The white curtains of our hotel room was bathed in the dappled gold of the morning sun. Mummy’s question to Papa, heavy with anxiety, hung in the air like dew.
I held my breath and froze in the next bed, pretending to be fast asleep. When a woman asks the man she loves whether she looks okay, the sacred space of vulnerability that ensues begs to be honoured and uninterrupted. Papa’s assurance was firm but gentle.
“No, don’t worry. You look all right.”
Mummy has scleroderma, or systemic sclerosis. It is an autoimmune disease that makes her self- conscious. The skin of her fingers stretch tight and taut, and painful ulcers on her fingertips cause her to wince when pieces of fabric get caught in the peeling, hard skin of her lacerations.
Mummy once kneaded dough for pizza, slapped babies’ bottoms, and scrubbed bathroom floors with her bare hands. Now, she wears rubber gloves to wash the dishes, and avoids staying in cold shopping malls for too long, as her fingers turn blue from the prolonged chill. Raynaud’s condition constricts the blood supply that floods her fingers and toes, so sudden changes in temperature cause her affected body parts to turn white and blue.
“Red gloves are for cleaning the toilet bowl, yellow for the kitchen, and pink for me to scrub myself clean in the shower!”
Yes, she colour codes her gloves, too.
Her knack for colour- coding and organisational details like the compulsory placement of slippers on the right- hand side of the shoe compartment, also leads her to file into her mental cabinet the comments of curious onlookers who prod and study the physical conditions of her fingers like visitors of a zoo.
“Why do your fingers look like this? Why?” A clinical lab assistant asks repeatedly, wide- eyed, before proceeding to stick a needle in Mummy’s vein and draw her blood.
Needles come in different forms. At high school reunions, childhood friends comment on how different she looks. “You’ve lost so much weight.” “What happened to you? Are you okay?”
“You’re as skinny as a plank. You need to eat up.”
Albeit the incessant tendency for aunties to field questions that appear concerned and well- meant, but end up becoming nosy, unwarranted, pain- in- the- neck morale killers. Mummy holds her head high and masters a stoic air. She radiates the resilience of steel, and chirpily takes pictures with her friends like a giggly schoolgirl.
But the loosening grasp of her slippery fingertips on an ice cream cone, coupled with my clueless insensitivity, become the only flimsy thing standing between peace and a war zone. I gloss over Mummy’s distress at her increasing inability to firmly grip objects in her hands, and like the wafer that now swims in a pool of pink ice cream, tranquillity melts into chaos.
“Why were you laughing when I dropped the ice cream cone?”
“I wasn’t laughing. I was smiling! It’s only ice cream!”
As we sit in the cold of a silent truce, I convince myself, in a cruel and twisted way, that she is merely exaggerating her physical problems. I assure myself that this is but a phase, and the healthy Mummy that I used to know will be back. Losing grip of a piece of wafer isn’t so bad. At some point in a person’s life, one is bound to experience an ice cream cone slipping from her grasp.
People without scleroderma lose hold of their door keys or ice cream cones out of sheer clumsiness. But scleroderma is an embodied vulnerability of progressive loss that escapes one’s comprehension or mastery. The diffuse form of scleroderma that inflicts Mummy involves her esophagus and gastrointestinal tract. There is no cure for the excessive build- up of collagen in the skin of her face, along with the lining of her esophagus and intestinal walls. Medications administered to patients relieve symptoms at best.
The progression of the disease often takes a specific course. For the first two or three years, the skin on the hands, feet and face thickens and becomes puffy. This process halts after awhile, and the skin may soften. But later on, the skin loses its ability to stretch, and becomes shiny. In extreme cases, hands and feet may curl from the tightness.
Waking up to the tingling numbness of her fingers in the cold dawn will remind Mummy of what she lost. She will struggle to open that jar of jam with her slippery, lacerated hands. She will find it difficult to swallow her food with ease, or savour spicy food. Opening her mouth widely will be a difficult chore as the skin on her face has tightened. Leaving the house for the market will require her to conceal the calcium deposits that leave visible blemishes on her face.
“Do I look okay?” She pats her face and looks in the mirror. “You’re all right, Mummy.” Mummy will lose something every day; maybe watch a mug slip from her hands, or yelp when her hands accidentally brush against the hard walls of our house. But she will gain something too; delight from a piece of chocolate cake, thrill from an episode of Downton Abbey and companionship from a chit chat with Papa over dinner.
And, I, on the other hand, know that I could never bear to lose Mummy. Beyond Barriers is a platform for sharing and raising awareness on disability issues and any chronic medical condition. We welcome contributions from readers who have a disability or any special needs, caregivers, advocates of disability groups, or anyone living with any chronic medical condition. E- mail your stories to star2@ thestar. com. my. Contributions which are published will be paid, so please include your full name, IC number, address and contact number.
raynaud’s constricts blood supply to the fingers and toes, so sudden changes in temperature cause the fingers to turn white and blue.