21. Policy

At first, I was reluctant to go because I thought it was just another boring get to know session with the Disable People. Yanti had emailed me the invitation that evening. Furthermore I had to arrange transport to get to the meeting and it was kinda late for that. But later that night I thought it would be good for me getting to know other people who are experiencing disbilities and I could write something from their experiences, so I called Mak Teh and asked her if she and Pak Teh could send me there and they were gladly to help me.

As I entered the meeting room, Prof. Datuk Dr Zaliha Omar , special aide to the Minister was taking down particulars from one of the participants and Yanti greeted me, I sat next to her and I whispered sorry to her and I didnt want to interrupt the whole discussion.

They were seven of us but I didnt remember all their names they was Alia, who is partly blind and have difficulty to walk, Khairul Amilin (deaf and cant talk, and happened to stay in the same neighbourhood as me) Humprey (nerve problem), Nurul (Hearing problem), Maheswaran (amputated hand), and a shy girl from Cheras with hearing problem.

Datuk Dr Zaliha Omar asks one of the participants

Although they are not perfect physically but most of them at least have a diploma in various fields – Masters in HR, Bachelor in I.T, International Business, Diploma in Risk management, Dip. In Fashion design, dip. In hotel management.

The dialogue session was held to help the government to form a policy in order to help the Disable People to find the suitable job in the job market be it in the public service or the private sector and to accommodate our disabilities at the working environment.

We also shared our frustration, the stigma and discriminations towards us by certain quarters in the society when we are looking for a job in the very competitive job market out there so that the government would know it hasnt been easy for us to find a job although we have qualifications.

When it was my turn to introduce myself, Datuk Zaliha asked in details about my conditions. She seemed to know a lot about Muscular Dystrophy. She asked about my diagnosis, medication, physiotheraphy and about my education background and work experience.

Hafiz relating his experience as a blind worker

So everyone was sharing their side of the stories and how they overcome their challenges they faced and keep trying harder to pursue their dream and their struggle in finding jobs. I was so glad to have attended the session as I get to know them and listening to their experiences and struggles that they are facing in life.

After the dialogue session ended, we were served with lunch and I was sitting next to Hafiz one of the department's staff who is blind. I told Hafiz about my research on MD and the lack of support group and how I set up the FaceBook page about Fazz Fadhilah vs Muscular Dystrophy. Suddenly Datuk Zaliha overheard my conversation came up to me and chatted to me, she told me 15 years ago she was the president of Muscular Dystrophy. Before she left she gave a pat on my shoulder and gave me her email address and bade farewell.

Yanti, Me and Azib

After the session, Yanti invited me to her office to help me to register online for public service works. I followed her. With the help of her colleague, Azid we went down to her office. Azid is a nice chap, he helped me to go to the toilet and helped serve lunch to me.

Yanti told me about her struggles, her childhood and her determination to excel in education and to get a good job. Because of her condition, she only know how to write and read at the age of 12 but that did not stop her from obtaining her degree. I was touched by her stories and proud of what she has achieved in life. while we were talking the other staff said hi to me, probably they recognised me from the session and they dropped by at Yant'is workstation and chatted to me. They were all so nice to me. When my aunty arrived to pick me up, Yanti and Azib accompanied me to entrance. Well, I am glad to be there, not only I could voiced out my concern ( and now people like me Disable are heard directly by the minister of course through her special aide) and I have made few new friends.  

20. Well Wishes

Since  set up the Fazz Fadhilah vs Muscular Dystrophy page to share my experience living and dying with that fatal disease, I have received a lot of well wishes from old friends I have nor met for so long, existing friends who always been supportive, new friends  whom I forged friendships on the internet,

I would like to thank all of you for remembering me, keeping me in your prayers and last for not least thank you for the friendship you have given me through your love, understanding ,support, compassion I will keep adding the wishes in this entry until I cant add them anymore.

Abu Musa Isa : Fuzz ko kat mana skrg? I read ur blog and info on MND sgt2 tersentuh degn entry ko. Well I cried sbb neglect our frienship. I wasnt there. Niswa n me plan to pay you a visit. I did cry, U can check with my wife, Niswa is so worried about you. Im in JB now, next weekm we will visit you and please give me your full address.

Mazlin Norman : Fadzli..i'm sincerely saddened to hear/read about the misery you are going through. You are such a nice person that you don't deserve to go through all these but hey, this is what happens in life.. But i'm glad that you're a fighter, i'm so glad that you are doing so much to also help others with information... you are a true hero, my friend!! I will always doa and pray for you, Fadzli.. take care...

Mursyida Mohiyaddin: We haven't talk for a long time, ya. Hope you are well.
Despite the physical obstacle, I am glad you are now sharing your experience with your friends. Please know that you are always in my thoughts. May God give you the strength to tackle life courageously. When things get hard to bear, hold on to your positive attitude.
I'm happy to see you have wonderful family and friends who are very caring and supportive. God bless them all. Please don't be a stranger. Keep in touch whenever you can. Take care ... God bless.

Saharuddin  Mohd Musthafa : My doa will always be with you, Fuzz. Be strong ok, my friend?

Rukiah Hanoum : Salam, May Allah swt give u the strongest of Iman

Eja ul Haq: I myself am  suffering from MG (Myasthenia Gravis) something got to do with muscles 

and its rare disease either. Honestly you motivate me brother.. :) And i'm not alone!!

Ogy Ahmad Daud: Salam Fazz, Saya amat2 mengkagumi semangat anda... U are a TRUE HERO. Will 


support you and my prayers are with you, Salam hormat K.Ogy




Francissca Peter: You are very brave and that is important so that you maybe the voice for those who 


are going that too. Hugs and you are in my thought and prayers



Richard Ariefiandy : Semangat Fuzzy


Nora Hafneh : Fight and win Fuzzie...Praying that Allah will give you strength and patience to

overcome the challenges you may face, my dear old friend...Amin Ya rabbal Alamin...I'm proud of

you  that you have the courage to share wth us :) Take care


Shah Nizam Omar: Sabar ya Fuzz


Nurhayati Mohamad Nor:  Am sorry to hear about that, but I know it'll make you strong and a better

man.


Dollah Jaafar: Fazz, semoga usaha dan niat yang mulia ini diberkati Allah swt. Dan di hari Jumaat

yang mulia ini abang berdoa akan kesejahteraan Fazz...  Amin


Kamarul Idham: Teruskan hidup dengan kekuatan hati dan fikiran. Itu sebenarnya yang memberi

kekuatan 

19. Spirituality-Healing Connection

Most people would turn to religion or spirituality to cope with the pain and to ease the process of acceptance for their conditions. Spirituality and religiousness have roles to play in the rehabilitation process and in the lives of people with disabilities. It makes us recognise and embraced that there is a Higher Power Greater than us. But first let us differentiate the term of religion and spirituality.

Underwood-Gordon et al., (1997) also distinguished between the meanings of spirituality and religiousness. This pervasive discernment was reflected in the writings of other authors in the fields of rehabilitation, occupational therapy and nursing (Egan & DeLaat, 1994; Engquist, Short-DeGraff, Gliner, & Oltjenbruns, 1996; Fitzgerald, 1997) as well as in the field of religion (Thomas, 2000).

Although related, these terms are not considered synonymous by most authors. 

Religiousness is associated with systems of worship, each system having a dogma that is shared with a group (Underwood-Gordon et al., 1997).

Spirituality, on the other hand, is considered a broader term (King, Speck, & Thomas, 1994), not associated with a specific religion, but refers to an individual's overall beliefs about the meaning and purpose of life (Fulton & Moore, 1995; Kirsh, 1996). Thomas (2000) stated that the difference between the terms is a contemporary distinction that includes the assumption that "whereas religion deals with the outer life, that is, institutions, traditions, practices, doctrines, and moral codes, spirituality treats the inner life, which thus tends to be individualized" (Thomas, 2000, p. 43).

An online friend, Brad Miller whom I met from Becker Dystrophy Canada, a support group for those affected with BMD in Canada told me his experience with religion and spirituality in coming to term with his condition which he suffered since he was a child.

He said. “ Great question Fazz! I think it does have an affect! I am a Christian and believe my faith helps me at times but it is still from time to time I do find it hard accepting the affects this has on my day to day life. And in times of frustration my belief helps me through those hard times. I think everyone needs something to help them get through I have also found that listening to music helps me relax and feel better.

I guess we all have to find what works for us since many of us have different beliefs. Some may question if your a Christian then why hasn't God healed you yet? I'd have to respond telling them in the bible it says in heaven theres no more sickness or pain so that must mean some of us will have to wait until we get there to be healed. Until then I just have to trust in God that one day we might find a cure! And I know the subject of spirituality/religion is a touchy subject for some but whatever people believe I'm ok with that!

Another online friend I have met from my FB page is Aunty Rukiah who has a friend affected with MD and now he is on a wheelchair and could not move his hands and legs.

Rukiah wrote "Allah loves us & He is testing us. Everyone is given trials in their lives. Sebagai penebus dosa2 yg lalu & kita hendaklah redha Akan ketentuan hidup di alam yg fana ini supaya kita ditempatkan di kalangan mereka yg soleh n solehah. Hold on tight n always supplicate to Him for He is nearer than our jugalar vein. Alhamdulillah He has given us time utk memperbetulkan keadaan esp masa lampau kita yg jahiliah dulu. Tc "

Dua is the most powerful weapon against troubles,
The most effective medicine against Illness,
And
The most valuable Gift to give,
So I'm making a special Dua for you today..tc
wa itha maridtu fa huwa yash fiin....when i'm ill,He's the healer(recite this all the time to ease ur pain) tc

Noryanti Mahbub Saad who is suffering from cerebral palsy whom I also met on my FB page said, “I always doa to Allah don't left me behind. Alhamdulilah ketidakupayaan itu terus membuat saya terus bergantung kepada Allah kerana kita diberi ujian ini kerana kita mampu melaluinya .InsyaAllah. Allah yang memberi ,dia juga akan menyembuhkannya.

One of the most impressive compendium of the compiled in Lenvin's 2001 book - God, Faith and Health: Exploring the Spirituality-Healing Connection which cited :

a) religious Americans have a lifespan approximately 7 years longer on average than non-believer      American.

b)regular religious fellowship benefits health by offering social support that may buffer the effects of  stress and isolations.

c) participation in worship such as prayers, doa and meditation benefits health through the psychological effects of positive emotions.

d) having faith benefits physical and mental health related to thoughts of hope, optimism and positive emotions.

e) when persons who are prayed for by prayers group or other people, there is indications of health improvement due to perceived divine interventions.

18. Jom Raikan Cinta

 

The Cousins

Akhirnya,  setelah mengambil ubat penahan sakit sebelum menghadiri majlis pertunangan adik lelaki saya, sakit belakang berkurangan tetapi kaki saya masih  lagi bengkak. Kami berkumpul di rumah Mak Lang.

Ketika di rumah Mak Lang, saya terfikir, mesti ramai orang yang hadir di majlis itu nanti dan tiba-tiba perasaan malu menyelubungi diri. Apa kata tetamu lain nanti kalau lihat saya sebegini? Poji pun mesti  malu dengan keluarga tunang dia. Macam mana nanti kalau Poji terpaksa menjawab pelbagai persoalan daripada pihak tunangnya tentang keadaan fizikal saya? Saya sendiri pun kadangkala rimas apabila ramai asyik bertanya tentang keadaan saya.

Saya memberitahu Mak Teh yang saya tidak mahu pergi kerana  saya malu dengan tanggapan tetamu-tetamu yang hadir saya juga tidak mahu memalukan Poji dengan keadaan saya ini. Mak Teh hampir menangis dan memujuk saya supaya pergi. “Please do it for the sake of your brother, biar orang nak cakap apa. This is our family matter. Please support your brother...” kata Mak Teh.

  Me With Abg Long n Faiz

Apabila teringatkan Poji, saya rasa pasti dia akan kecewa kalau saya sebagai abangnya tidak menghadiri antara hari bersejarah dalam hidup dia. Saya kuatkan semangat dan kikis perasaan malu dan rendah diri. Berulang kali saya berkata pada diri sendiri bahawa perkara yang saya risaukan itu hanyalah mainan fikiran. “What people talk behind my back is none of my business, at the end of the day, I know I have done my best to support my brother,” kata saya sendirian.

Kami pun bergerak menuju ke rumah pihak perempuan. Saya dan Abang Long naik satu kereta bersama anaknya Faiz yang baru berusia 3 tahun lebih. Sepanjang perjalanan, kami tidak banyak berbual. Mungkin Abang Long dapat rasakan yang saya tidak akan rasa selesa berada di khalayak ramai dengan keadaan saya sebegini.

with Pak Teh and  Mak Teh

Setelah sampai, Abang Long membukakan pintu kereta saya dan kami berjalan menuju ke rumah pihak perempuan. Tangan kanan saya memegang crutches dan tangan kiri saya mahu memaut lengan Abang Long supaya apabila berjalan saya dapat menstabilkan kaki saya untuk berjalan dan mengelak daripada terjatuh. Tapi tapak tangan kanan Abang Long terus mengenggam tapak tangan kiri saya dengan erat tanda memberi sokongan pada saya untuk berdepan dengan situasi berkenaan.

Sebelah tangannya memimpin saya dan sebelah lagi tangan Abang Long memimpin Faiz. Rasa lucu pun ada, rasa macam saya anak anak kecil seperti Faiz. Seperti yang telah saya jangkakan, semua mata yang hadir, tertumpu pada saya. Saya kuatkan semangat dan buat muka tebal dan senyum pada semua yang ada di majlis itu.

“Because this what I am , I have to be brave to face the crowd and I am not ashamed of my condition. This is an important day for my younger brother and I am here to show my support and love for him, no matter what...” bisik kata hati saya.

Dozz off  little Faiz

Sampai di depan rumah berkenaan, tanpa menghiraukan pandangan tetamu-tetamu lain, Abang Long terus membantu membukakan kasut saya dan pabila masuk ke dalam rumah sebuah kerusi telah tersedia untuk saya, jadi saya tak perlu duduk bersila dan mudah untuk saya bangun nanti. Alhamdullilah, majlis pertunangan berjalan dengan lancar and I had successfully overcome my self esteem issue because of the love for my younger brother and because of the love and support demonstrated by mt Abang Long.