Heal­ing words

Dr Rau­dah Yunus raises aware­ness on car­ing for spe­cial needs chil­dren, not with med­i­cal facts, but with sto­ries.

The Star Malaysia - Star2 - - Front Page - By S. INDRAMALAR star2@thes­tar.com.my

AS a med­i­cal prac­ti­tioner, Dr Rau­dah Yunus has met, di­ag­nosed and treated many sick pa­tients, in­clud­ing chil­dren.

How­ever, she only be­gan to un­der­stand the suf­fer­ings that her pa­tients and their fam­i­lies have to en­dure, when she met Nus­rat, a young mother from Bangladesh.

Nus­rat and her hus­band have two sons – Su­nan, who is autis­tic, and Awan, who was di­ag­nosed with laryn­go­ma­la­cia (a con­gen­i­tal soft­en­ing of the tis­sues of the lar­ynx or voice box above the vo­cal chords).

Un­able to find ad­e­quate help for Su­nan in Dhaka and un­will­ing to have her child en­dure the stigma of be­ing autis­tic, Nus­rat and her hus­band up­rooted their fam­ily to Malaysia and trav­elled back and forth to Sin­ga­pore for treat­ment.

It was ex­pen­sive and ex­haust­ing but they found the strength.

When their sec­ond son Awan was also born with a med­i­cal con­di­tion, things got harder.

“Spend­ing time with Nus­rat and her sons and lis­ten­ing to her story was a wake-up call for me. I’d never seen first-hand how dif­fi­cult it was for a mother to raise a sick child. Like most peo­ple, I never even thought about what it might be like.

“I was very moved and felt that her story needed to be shared. There is a lot of ig­no­rance in our so­ci­ety about chil­dren who may not seem ‘nor­mal’. As Nus­rat re­lated some of the mis­treat­ment she’d been through and peo­ple’s judge­men­tal at­ti­tude to­wards her chil­dren, I knew what I had to do,” says Dr Rau­dah, who is cur­rently com­plet­ing her doc­tor­ate in pub­lic health at Univer­siti Malaya.

And so the 33-year-old em­barked on a mis­sion to com­pile sto­ries of moth­ers who had over­come dif­fi­cult chal­lenges as par­ents. The task wasn’t easy and a num­ber of women she ap­proached re­fused to have their sto­ries told, pre­fer­ring to keep their lives pri­vate.

But Dr Rau­dah didn’t give up.

She found eight ex­tra­or­di­nary women who agreed to share their in­spir­ing sto­ries. With the help of her hus­band, Dr Md Mah­mudul Hasan, an English Lit­er­a­ture lec­turer at the In­ter­na­tional Is­lamic Univer­sity Malaysia, Dr Rau­dah com­piled and co-edited Tales of Moth­ers her first book, which was pub­lished two years ago.

Of love and ac­cep­tance

The process of put­ting the book to­gether was an emo­tional one for Dr Rau­dah, a mother of two chil­dren, aged five and seven. As a doc­tor, Dr Rau­dah knew the med­i­cal facts about con­di­tions such as autism and cere­bral palsy.

But as she learnt more and more about the tri­als and chal­lenges of rais­ing spe­cial needs chil­dren, she be­gan to grasp the chal­lenges fam­i­lies face; from the stigma and dis­dis­abled crim­i­na­tion that the sick and face to the prej­u­dices that limit their ac­cess to ed­u­ca­tion.

“I had no idea. I cried as I was edit­ing the sto­ries. I learnt so much and the ex­pe­ri­ence com­pletely changed the way I looked at things and at life,” she says. But she is quick to point out that de­spite her tears, the book is one of hope.

“The chal­lenges that all th­ese women have borne tug at the heart. But what’s in­spir­ing is de­spite what they were up against, all their sto­ries have happy end­ings. Maybe it’s not the happy end­ing we are ac­cus­tomed to be­liev­ing in, but ev­ery one of them would not have their life or their chilway,” dren any other she re­lates. The sto­ries are var­ied. Mard­hiyyah Sahri shares her painful ex­pe­ri­ence of los­ing one of her twins and rais­ing her son, Ayyash who has cere­bral palsy. The Cho­sen Ones,

In her mov­ing story, Mard­hiyyah writes about how her son has given her the “courage to face my fear and turn it into an ad­ven­ture”.

She talks about the end­less treat­ments and ther­a­pies her son has to go through, and the anger she felt at be­ing judged by so­ci­ety.

“It’s amus­ing how peo­ple call him dis­abled, and yet he en­ables so much. Ev­ery day, he tries hard at ev­ery­thing. And ev­ery day, no mat­ter how hard the day is, he smiles at us with ut­most sin­cer­ity. Such pu­rity is con­ta­gious ... It was hard at first to grap­ple with peo­ple’s judge­men­tal and un­sym­pa­thetic at­ti­tude, and I some­times strug­gled hard to re­strain my­self from snap­ping or re­act­ing im­pul­sively.

“With time, how­ever, I learnt to be more tol­er­ant ... they may not un­der­stand what it means to have a spe­cial needs child and maybe they have no idea at all what cere­bral palsy is all about,” she writes.

Then there is Nor Adlina Mustafa Ka­mal who talks about the joy of adopt­ing a young or­phaned baby she met as a young doc­tor, and the of­ten hurt­ful prej­u­dices she faced as a sin­gle mother.

Sarah Ibra­heem writes about the break-up of her mar­riage and rais­ing her three boys – her pil­lars of strength – on her own.

Zaahi­rah Mo­ham­mad talks about her sur­prise de­ci­sion to leave her job as a doc­tor to be a stay-at-home mum and Afzan Maria nar­rates her ex­pe­ri­ences of liv­ing abroad and the strug­gles of jug­gling a ca­reer and fam­ily.

An­other chap­ter is on Faezah Rokhani who en­dured the pain of be­ing sep­a­rated from her child to fur­ther her ed­u­ca­tion. Yet an­other story is on the end of Kaseh Aini’s mar­riage and how she picked up the pieces of her life.

Rais­ing aware­ness was one rea­son Dr Rau­dah pub­lished her book.

But she also wanted it to be a life­line for other moth­ers who feel alone and over­whelmed.

“Ev­ery­one’s cir­cum­stances are dif­fer­ent and it’s easy to feel alone. Hope­fully by read­ing about th­ese moth­ers and how they’ve come out stronger, they know that they’re not on their own.

“Men need to read it too be­cause they should know what women go through,” she says, adding that the book also fea­tured sev­eral ar­ti­cles writ­ten by par­ent­ing ex­perts, of­fer­ing tips for moth­ers of chil­dren with spe­cial needs.

An un­ex­pected jour­ney

Dr Rau­dah never imag­ined that she’d be an au­thor.

But five years into her med­i­cal prac­tice, Dr Rau­dah re­alised that she wanted to do more.

“In med­i­cal school, I never dreamed of do­ing any­thing like this. Medicine was the only thing on my mind. But af­ter some years, I re­alised that prac­tis­ing medicine wasn’t my pas­sion and so I went into pub­lic health, which deals more with so­ci­ety.

“As a clin­i­cian, I’d meet pa­tients, pre­scribe drugs and that would be the end of story. In pub­lic health, I get to be more in touch with so­ci­ety. It isn’t just about facts and fig­ures, and Maths and Sci­ence, and I found my­self drawn to it. I guess I didn’t dis­cover my pas­sion un­til now,” she says.

Writ­ing a book, as a way of rais­ing aware­ness on how moth­ers cope with chal­lenges, was a sur­pris­ing devel­op­ment to Dr Rau­dah.

She has al­ways been in­ter­ested in writ­ing but she didn’t think she’d pur­sue it se­ri­ously.

“I never had much con­fi­dence in my writ­ing. I’d write (sto­ries) on a sheet of pa­per and then crush it and throw it away as I didn’t think it was any good. But a few years ago, with my hus­band’s en­cour­age­ment, I de­cided to give it a go.

He was very sup­port­ive and told me that I had tal­ent. He urged me to keep at it.

“Be­ing a lit­er­a­ture lec­turer, I fig­ured he must know what he was talk­ing about and so I con­tin­ued writ­ing,” she re­calls. Tales of Moth­ers was pub­lished two years

and Dr Rau­dah re­cently com­pleted a a sec­ond book. This time, the fo­cus is on refugees.

“I have been help­ing with var­i­ous refugees’ pro­grammes since 2007 and I think that we need to raise aware­ness about refugees and the is­sues they face. Most Malaysians know very lit­tle about the refugee sit­u­a­tion.

“Some of my friends ... and th­ese are peo­ple who are highly ed­u­cated ... have a lot of prej­u­dices to­wards refugees. It re­ally shocked me that in­stead of be­ing hu­mane, they see refugees as a bur­den to our so­ci­ety. It shows how lit­tle we know of their sto­ries. They may look like you and me but they have been through the un­think­able to get here and I needed to tell their sto­ries,” she says.

At the mo­ment, Dr Rau­dah is fo­cused on fin­ish­ing her doc­tor­ate.

But she hasn’t ruled out a se­quel to Tales

of Moth­ers. The re­sponse to the book as been over­whelm­ing, she says and she has re­ceived re­quests for a sec­ond book.

“I’ve even re­ceived mail from sin­gle women who found the sto­ries to be quite a real­ity check, be­fore they get mar­ried and set­tle down. I think that’s good be­cause they need to know that life isn’t al­ways a bed of roses.

“I’ve been asked to do a sec­ond one and I’d love to. Maybe soon,” she says. Tales Of Moth­ers is a nom­i­nee in the Pop­u­lar-The Star Read­ers’ Choice Awards (Non­fic­tion)

Photo: NORAFIFI EH­SAN/The Star

The process of pub­lish­ing the book was both emo­tional and en­light­en­ing for Dr Rau­dah. — NORAFIFI EH­SAN/ The Star

Chron­i­cles of in­spir­ing moth­ers.

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