Scourge of sclero­derma

A young reader shares a poignant ac­count of her mother’s strug­gle with an au­toim­mune dis­ease.

The Star Malaysia - Star2 - - LIVING - By W. J. CHEAH

“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.

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