JANUARY 22 — My youngest brother, Tunku Alif Hussein Saifuddin Al-Amin, was born on Sept 3, 1984. I remember getting a call at home, from the hospital where my brother was delivered. My parents told me Alif had been born with “lack of Vitamin K to the brain.”
I did not know what that meant, but I remember being told he had to have an operation. Several people called the house after that and since my parents were at the hospital, I was forced, as a seven-year-old, to explain the conditions of Alif’s birth to others. I don’t recall doing a particularly good job.
From the very beginning, Alif was teaching me to grow up quickly, to deal with situations I was not familiar with and to try to feel confident in explaining myself as a spokesperson for the family. Alif ended up having several procedures, I do not remember exactly how many, and we lived for several weeks (or were they months?) in the hospital. A shunt was put into his brain; it would remain there for the rest of his life.
In surviving his earliest challenges, Alif taught me about resilience — his own — and about the importance of knowledge. My other brother Tunku Zain and I watched our parents learn everything they could about Alif’s condition and about ways to help him get better.
A book titled What to do About Your Brain-Injured Child started things off and Alif began having therapy sessions at a place called Nury Institute. Eventually, my parents decided they would go to Philadelphia to attend the Institutes for the Achievement of Human Potential (IAHP), on what was known as the “off-campus” programme. Idin and I missed our parents and Alif, as they were gone for several weeks.
When they came back, we started on a series of different activities for Alif, such as “patterning” (teaching Alif how to crawl properly), “inclined plane” (having Alif come down a slope using crawling techniques he had learned), and “masking” (having Alif wear a mask at regular intervals to train him to utilise oxygen effectively).
There were also a series of flash cards on everything from days of the week to impressionist paintings to different dinosaur species.
Throughout this period, Alif taught me about hope and in working towards what was seemingly an impossible goal. He taught me to make the most of things despite having so little and to appreciate even the small victories when he would get to the end of the inclined plane or the crawling track. He taught me about patience and investing time and effort to see results.
Of course, we could not do this alone, we had volunteers. Many people took time out of their busy lives to come and help out with Alif’s programme — aunts, uncles, and family friends — some coming as often as three times a week. We cannot thank them enough for all the support they gave. Datuk Ridzwan Ariff, whose own son also attended IAHP, was one of the volunteers. He passed away one day after Alif.
Through his programme, Alif taught me the importance of working with others to achieve goals. He taught me about the importance of family and of friends. He taught me about compassion, a word my mother used often.
Eventually, my father sold his company to have both the time and the funds to focus on Alif’s programme, which was stepped up to “intensive” level.
This involved night exercises, with a machine that would help to regulate Alif’s breathing as he slept. I was taught to look after Alif during some of these nightly sessions.
Through my father’s actions, Alif taught me about sacrifice, about the need to focus on what was really important. Through spending time with Alif, I was taught about responsibility.
As Alif grew older, I was away for school but the programme continued. As my father had sold his company, our family’s financial resources were lower than they might otherwise have been. Both Idin and I received financial support, including from extended family, to help put us through school.
Indirectly, perhaps, but through his programme, Alif taught me about the importance of education and the value of having access to the best schools in the world. He emphasised again that it was impossible to do things alone and to treasure and appreciate any support that was provided.
Family trips were rare back then, so we would greatly appreciate them. Between 1990 and 2008 — 18 years — I recall three trips — for umrah, to Switzerland, and to Italy (there have been more trips since 2008). There’s a great picture of my brothers and I outside Masjid Nabawi — Alif in his stroller, Idin in his Arab garb, and me at the peak of youthful awkwardness. The planning, then, and every trip since, revolved around Alif.
Were the bathrooms large enough to bathe him? Would we be able to prepare his meals despite staying in a hotel? How long were the journeys between places?
Through our travels together, Alif taught me the importance of planning, of balancing different objectives, of ensuring certain minimum requirements were met, and of prioritisation — what was really important for us to see?
Despite being generally well — I only recall three periods where he was warded for significant periods — his health wasn’t always the best. Every time he had a fit I would get worried and upset and sometimes even panic. Yet, he would always come out of it, and when he did, he would be calm, and at rest.
Through his health challenges, Alif taught me that despite everything, we should be sabar — a word that I feel encompasses more than just patience. We can’t control everything but we should try our best to make the most of difficult situations.
On his last day, despite being sedated and barely conscious the previous week, Alif woke up as our family gathered around him. He looked right at us, and despite the breathing tube in his mouth, he tried to talk to us. He had waited for Papa’s birthday to be over, and now it was as if he was telling us that everything would be okay. He was saying goodbye.
As he left us, he reminded me of the importance of family, the importance of time spent together, and the fact that our time on earth is finite.
During the journey back home to Seremban, my father reflected on what a difficult life Alif had and how so many people had helped him, not just in his final days, but over all the years of his life.
As we laid him to rest last Friday afternoon, the clouds erupted, and there was a storm like Seri Menanti had never seen before. We are told that the rain — tears from heaven — helps the soul on its onward journey — if so, that storm would have been a rocketship.
Alif, you helped shape the lives and characters of everyone who had the opportunity to meet you. Our parents, your Bang Idin, our aunts, uncles, cousins, all our other relatives, and family friends were all touched by you.
Alif, I am who I am today, because of you. I’ve not been a great student, so I’m by no means perfect, but I’m a far better person than I would otherwise be. Thank you for everything that you have taught me.
Goodbye, my brother, and may your sweet soul finally be at peace. We shall all miss you dearly. Al Fatihah.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of Malay Mail Online.
