Tough Love

Now and then, I have people with neurofibromatosis opening up to me. They tell me about their conditions, situations, and how they feel. Some of them have yet to undergo as many surgeries as I have and have yet to develop as many physical challenges as I have. Some others have been through more in their journey in other ways such as parental divorse and having witnessed other family members dying from NF complications.

All these timesI am being given the opportunity to learn how to empower others to empower themselves. Originally, I did not know how to do that. Like many humans, I was very tempted to save people at the expense of myself. Now I am learning to be patient, to have faith in others and trust that they too can learn to be strong. I am learning tough love.

It is not easy. I used to be afraid that other will fall and try to prevent it, because I had fallen many times and did not want my pain to happen again even on others.

What I had to realise was that, I had become strong from all the pain and falls that I went through and over came since my early childhood. I might not be as strong as I am today without these experiences.

Whenever another NF patient opens up to me, I relate to the person with empathy especially on how they feel. I would advice them to take affirmative and proactive action, and say words that guide them forward practically. In my heart, I know that the truth – this is not going to be easy for you. I don’t say that out loud of course. I know it will not be easy and I don’t want to lie by giving false assurances to people. So what I do know is that, I guide others to be firm, decisive and resolved. Come what may. Whatever that comes face it anyway with courage.

No one can make us strong. Only we can make ourselves strong.

Forever First Love

This is how our brains worked. When we experience something significant emotionally and a piece of music happens to play at the same time of that experience, the music would become deeply ingrained into our brains like reinforcement. The first compounded by our emotionally significant experience. It happened to me once.

In late 2013, a large group of my ex school mates had a gathering. I attended the gathering while still jet lagged from my US return flight so I rested my head on the table with my eyes opened. Another pair of wide eyes came into my field of vision suddenly, just inches away. In a split second, Lee Hom’s Forever First Day played in my mind. That pair of eyes looked like the eyes of my ex-boyfriend whom I had just ditched. Seconds later, I realized that was actually Yi Hoong staring back at me.

I did not want to reconcile with my ex-boyfriend. I was just too used to him being present in my life for almost two years.

I had no special liking for Lee Hom’s Forever First Day. It was included into the first album of his that I bought. It used to automatically play as the soundtrack loop continuously during the day. I was 15 years old when a friend introduced me to Wang Lee Hom’s music. My aunt Ivy had just died that year and my extended family tore apart over her estate. I was broken hearted. Forever First Day had a nostalgic tune both in the music and the singer’s voice. I missed happier times when aunt Ivy was alive and healthy. Forever First Day evoked emotional solitude.

Although my ex-boyfriend and I were dissimilar and I could not live with his anger issues, he was not entirely a bad suitor. Having being raised by a hostile Hakka mother myself, I did not get much physical embrace and comfort. My ex-boyfriend made that up for me.

The part of our brain which records emotional memory is called the Amygdala located at the limbic system, deep beneath the cortex. Goes to show how impactful, meaningful music can be.

Glad Tidings

I am grateful that I have many doctors and surgeons who are very familiar with neurofibromatosis and my medical history, ever ready and willing to assist and look out for me when I need them even though the recent post-operative mishap at NIH was regretful and unfortunate, I am still blessed because I have better doctors and care team to fall back on. Earlier this week, Dr Lekovic received my latest MRI, reviewed it and provided his evaluation to me at no charge like he always did in the past, although I am not currently in his care. I have also sent a copy to Dr Friedman and Dr Giannota at KECK School of Medicine for their evaluations and monitoring. Dr Friedman is out of town this week but will look for it when he gets back.

They live and work half way across the world from where I am. But I can feel and appreciate their care and concern even from so far. Life with NF can be daunting and worrisome, but choosing the right doctors to care for myself has put much of my worries to rest.

I am also grateful that I am born an only child and my mother is still here for me at her age of 67. There are no perfect parents – my mother and I have been through many rough patches and tensions together throughout my lifetime. But despite it all, no matter how difficult I was at times, my mother never left me but continued to take care of me especially when I had no one else to rely on. I had heard stories of other NF patients being neglected or sidelined by their parents. I was lucky to be born as my parents’ precious child.

I am grateful that my mother loved to rescue abandoned stray animals and nursed them back to health. Not only did she demonstrate compassion for those who are in need of love to me, the rescued animals taught me that showered me with love too. They have always been here with me unconditionally.

I am grateful that my mother did her best to provide for me after my father suffered a stroke in third year of life. I am grateful that despite her emotional stress and little to no income, my mother still sent me to kindergarten even though she did not have early childhood education herself. She had to work all day and unable to take care of me, so she arranged for a babysitter to pick me up from kindergarten and look after me until evening. I am grateful that when I told my mother how my babysitter intimidated me, my mother stopped sending me there right away. I am grateful that my mother also sent me to mental arithmetic classes with her meagre income so that I might become smart and able to survive, even though my mother herself was not an intellectual person.

I am grateful that my father, despite being limited by his damaged brain, did all he could to care for me. I am grateful that my father sent me to and fro school, extra classes and social activities without hesitation. Sure, he was often late from over sleeping due to lung failure. But he always rushed to me once he woke up. I am grateful that my father always defended me whenever I told him that I was bullied. I am grateful that my father had taken me to visit many interesting places around Kuala Lumpur to spend time alone with me before his stroke. I am grateful that my father still took me to visit whoever I wanted to visit after his stroke. My father unwittingly showed me the value of kinship.

I am grateful to my aunty Ivy. Although I was not her own daughter, she took the initiative to protect my early childhood development, knowing how my parents were limited. I am grateful that she sent me to learn ballet, music, art, figure skating, tap and modern dances so that I could develop a strong sense of self.

Most of all, I am grateful to my mother for her prudent decision to teach me independence since I was four years old. After my father’s stroke, my mother helped her sister manage a furnishing business in Subang Parade. She would give me some money and allowed me to go buy my own food and even help her get groceries. Of course I did not know why she did that and often wondered why did she not care for my safety. I am grateful that because of my mother’s tough love I grew up with an independent character which so many admire today.

Penguasaan diri melalui usaha secara berdikari

Seorang kawan menunjukan gambar berikut kepada saya. Ia meningatkan saya mengenai penentuan saya untuk berusaha membiayai yuran pembedahan dan perubatan di luar negara supaya saya boleh terus hidup semenjak umur sembilan belas tahun.

Tidak seperti apa yang dikatakan dalam gambar ini, saya bukan gigih berusaha demi mencapai kejayaan, walaupun pembedahan diperlukan untuk menyelamatkan dan memperliharakan nyawa diri.

Saya berusaha secara berterusan kerana saya suka akan perasaan berdikari. Apabila saya boleh mengunakan usaha diri, perasaan itu amat menguasakan.

Sewaktu saya berumur tiga tahun, ayah mengalami pendarahan otak. Semenjak peristiwa itu, saya sudah terpaksa berdikari. Sering saya berasa takut dan keliru mengapa keluarga saya penuh dengan kepahitan. Sebagai kanak-kanak, saya tidak terdaya membuat apa-apa, selain bertahan.

Keadaan hari ini berlainan kerana saya bukan lagi seorang kanak-kanak yang tidak berdaya. Melalui pertabahan saya pada masa kecil, saya berjaya menguasakan diri sendiri. Jadi, apabila saya mengunakan usaha diri hari ini, saya diingatkan tentang kekuasaan saya hari ini berbanding dengan masa dahulu yang tidak terdaya. Peringatan ini memberi saya kesyukuran.

Sebenarnya, saya tidak erti apa itu putus asa, kerana berputus asa cuma akan membawa lebih kesusahan pada diri sendiri. Dalam hidup dengan kelainan genetik Neurofibromatosis, putus asa akan membawa kesusahan untuk seisi keluarga dan akhirnya maut pada diri sendiri. Mengapa saya patut berputus asa, sementara berusaha untuk meneruskan nyawa diri begitu menguasakan?

Two Mindsets and their different attitudes

Mind over Matter

I encouraged the mom of an 11-year-old girl with NF1 yesterday by sharing with her how I coped when my self-esteem was tested in childhood.

I was born with a deformed left eye and was teased a lot in school. It hurt. But at the same time, I was performing well in ballet class and concerts, which strengthened my sense of self.

Throughout my growing up years, I was closest to my father’s younger sister, my Aunt Ivy. I was more close to her than my own mother. Aunt Ivy was a spiritually strong, independent and capable woman. Growing up with her, I learned that physical conditions do not affect us. Mind over matter, so when I was diagnosed with Neurofibromatosis, i did not think my condition made me any less. What’s important are my inner and inherent qualities.