A toast to life

Ev­ery birth­day is a mile­stone in the midst of life’s un­cer­tain­ties.

The Star Malaysia - Star2 - - LIVING - By HAN­NAH VI­MALA

ILOVE birth­days. They are very spe­cial oc­ca­sions. Ev­ery year, I start the count­down to my birth­day months be­fore the big day.

When I was a child, birth­days meant lots of cards, hugs, sweets, treats, flow­ers, gifts and bless­ings. Decades later, I still look for­ward to birth­days with much an­tic­i­pa­tion and ex­cite­ment.

I never thought I would be around to cel­e­brate my 50th birth­day as I was di­ag­nosed with mus­cu­lar dys­tro­phy when I was eight months old. Mus­cu­lar dys­tro­phy is a ge­netic dis­ease char­ac­terised by pro­gres­sive weak­ness and de­gen­er­a­tion of the mus­cles that con­trol move­ment.

Some forms of mus­cu­lar dys­tro­phy man­i­fest in early child­hood, while oth­ers may not ap­pear un­til mid­dle age or later. The dis­or­ders dif­fer in the ex­tent of mus­cle weak­ness, rate of pro­gres­sion and the pat­tern of in­her­i­tance. There is no cure for mus­cu­lar dys­tro­phy, but treat­ment can help man­age many of the symp­toms. Treat­ment in­cludes phys­i­cal and speech ther­apy, surgery and med­i­ca­tions.

In the later stages of the dis­ease, the pa­tient may have di­min­ished heart and re­s­pi­ra­tory func­tions which can be po­ten­tially life-threat­en­ing.

I’ve been a wheel­chair user since I was eight years old. The doc­tors told my par­ents there was no cure for my con­di­tion, and rec­om­mended phys­io­ther­apy to de­lay the pro­gres­sion of the dis­ease.

Mus­cu­lar dys­tro­phy pa­tients may have a short­ened life­span as the dis­ease pro­gresses, so I of­ten won­dered if I would have a chance to cel­e­brate my 50th birth­day.

For a cou­ple of months prior to my birth- day, I prayed daily for God to bless me with good health as I wasn’t in good shape. Mus­cu­lar dys­tro­phy had slowly rav­aged my body and I knew I couldn’t post­pone the things I wanted to do in life.

I wanted to en­joy ev­ery mo­ment I have be­cause my con­di­tion is de­te­ri­o­rat­ing by the day. I had lost a lot of weight over the months prior to my birth­day. My food in­take had dropped as I had dif­fi­culty swal­low­ing.

Os­teo­poro­sis had weak­ened my bones to a point where it was tir­ing for me to sit up for too long.

Be­sides health con­cerns, my fa­ther, a stroke pa­tient, was taken ill sud­denly and had to be hos­pi­talised. But God heard my prayers and my fa­ther re­cov­ered and was dis­charged in time for the fam­ily to make the nec­es­sary prepa­ra­tions for my big birth­day bash on Oct 6 last year.

When I awoke that morn­ing, I lay in bed lis­ten­ing to the birds out­side my win­dow singing a birth­day song for me. What a beau­ti­ful morn­ing it was. I thanked God for the gift of life. I had never felt so good in a long time, and my heart was filled with thanks­giv­ing.

It was a birth­day I will never for­get. Fam­ily mem­bers and friends turned up in full force bear­ing gifts, good wishes and bless­ings, to make the day a truly joy­ous one for me.

Blow­ing out the few can­dles on the birth­day cake re­quired tremen­dous ef­fort on my part. But one by one, I blew out the can­dles as friends and fam­ily mem­bers cheered me on. It was won­der­ful to be sur­rounded by loved ones. I had a great time catch­ing up with friends I had not seen for some time. Months af­ter the big bash, my spirit is still lifted up by the warm glow of ca­ma­raderie.

Yes, liv­ing with a fail­ing body has never fazed me. Since I spend most of my time in a wheel­chair, I feel ev­ery el­e­va­tion change and un­even sur­face on the ground. I know life has its ups and downs, highs and lows, and I’ve learnt to deal with the un­even sur­face.

Mus­cu­lar dys­tro­phy has robbed me of my abil­ity to do sim­ple things which most people take for granted. Daily tasks like brush­ing my teeth, tak­ing a bath and feed­ing my­self take on Her­culean pro­por­tions. These are some of the chal­lenges that a per­son in my sit­u­a­tion has to deal with on a daily ba­sis.

Yes, I have mus­cu­lar dys­tro­phy, and yes, it has changed the course of my life, but it can’t stop me from mak­ing the most of ev­ery day for as long as I have breath.

Mile­stone: The writer cel­e­brat­ing her 50th birth­day on Oct 6 last year.

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