This post is written based on my truest feelings, the torments of being a patient of NF. If you are one who provided me support, thank you very much, because you are not the ones who judged and ignore me. You’re not the ones I wrote about here. Just to clear things up so I won’t hurt kind people unknowingly.
I am feeling very sad today, and I won’t deny it this time. About 15 of us gathered at Jia Yin’s house for our weekly cellgroup meeting, and all was fine until my last straw was finally pulled. My body began to burn and streams of tear flowed down my cheeks. I tried hiding, so no one would notice, but I also knew that crying was the best thing to do this time, because I should have cried a long time ago.
I feel very very lonely, and no matter how strong I try to be, I am only human. My parents sometimes insult me in front of other people by complaining that I spend too much time on the computer, but what else can I do to experience communication? I am so tired of sitting all to myself among gatherings and act as though I am not bored. I’m tired of sitting in class and act as though I am paying attention, because what attention is there to pay? I can’t hear a single thing, and hardly anyone cares. I’m tired of sitting through sermons on Sundays, because I can’t hear a single thing about what is going on. Even though there is a slide projector, but it barely reflects what the speaker is saying. So on and off, I would just walk out of the congregation to space out, but someone would call me back in. I feel so sleepy, so sleepy during sermons, but I can’t sleep or walk out too much because it’s disrespectful. I’m tired of attenting cellgroup meetings and act as though I am joyfully involved, because the truth is, I can’t hear a single thing and I’m bored to my bones. But I have to attend, because I need to fellowship with my friends. I’m tired of watching TV with others and have to act as though I understand the show, when there’s no subtitles and I won’t know what everyone is laughing about.
I know… this is just a part of life which I must learn to overcome, and I must persevere because no one is going to help me if I don’t even help myself, but I am seriously very tired.
Just last Wednesday, mom and I drove tens of kilometers to the hospital, only to wait for my surgeon to start seeing his patients four hours later. But when he finally came, I realised that my whole morning had been wasted, because he wouldn’t write me the letter I request from him. He just had to mention about UH (University Hospital) and the cochlear implant, when I have told him a hundred times for more than a year, that I need the AUDITORY BRAINSTEM IMPLANT and NOT the cochlear implant, and it is NOT AVAILABLE in Malaysia. But he had been turning a deaf ear to my claims, because only last Wednesday did he decide to search the internet to validate my claims. It has been more than a year since I started mentioning these to him! Why did it take him so long to bother?!? Please, it is a global fact that the cochlear implant cannot work without hearing nerves, hence the only hearing aid possible for me is the ABI! So now you want to validate my claims, isn’t it a bit too late? And he decided to pay serious attention JUST BECAUSE I NEED THE LETTER FOR THE PRESS!! He said, he can’t simply write a letter because Malaysia will lose face! Oh my God! When I first told him about all these, I could still hear well. So now he decided it’s serious, but only to defend Malaysia’s reputation, and not because I am already deaf!!
You can call me unpatriotic, whatever. But it is a fact that many Malaysians are living in denial. The doctors here are inexperienced, lack of knowledge and ignorant, and that’s a fact. I have been researching about the acoustic neuroma and its treatment options for three years now, so I know it like the back of my hand. The one the affected my right ear was PARTIALLY removed at GENERAL HOSPITAL KUALA LUMPUR, because THEY COULDN’T REMOVE IT ENTIRELY. And mind you, that surgeon was among the most experienced neurosurgeons in Malaysia. Yet, he only managed to remove half of the tumor and I had to suffer facial paralysis for the rest of my life. And there were scarring tissues, spinal fluid leakage and I was nauseous for one whole month! See! I absolutely know what it’s like to remove this tumor in Malaysia, because I have been through it before, and it was HELLISH! I do not want to go through it again, hence, I decided to get the current Acoustic Neuroma removed in America. Dr. Friedman and his team are so caring, I feel so loved when treated at the House Clinic and St. Vincent Medical Center. The nurses were so dear to me and I was well taken care of. But in Malaysia, apart from suffering the consequences, I had to put up with the unkind nurses, the ignorant doctors, and the fierce physiotherapist. The nurses at the General Hospital are evil! They bullied me so much, I almost wanted to kill myself, especially during the spine surgery. If I explain how the nurses tortured me, I will defame Malaysia to the core! I hate to be treated in Malaysia, I hate it! But who understands? Nobody… nobody understands.
Most people only care to judge me. They think I’m being unrealistic by wanting to have surgery in America. They think that I’m asking too much by wanting to preserve my facial nerve. They think I’m undeserving for help. They think America is only but a dream, so I am being stupid. But HECK! Do you know what it’s like to have a paralysed face? No you don’t, but I do! Do you know how lonely it is to be deaf? No you don’t, but I do! Do you know what it’s like to be tortured by nurses? No you don’t, but I do! Do you know how hurtful it is to put up with ignorant and arrogant doctors? No you don’t, but I do! Do you know how painful it is to undergo repeat surgeries after an unsuccessful one? No you don’t, but I do! You know nothing, so stop judging me. If you think I’m just a pampered brat, heck, do you know my history? I know what it’s like to live in the ruts, I know poverty, I have eaten plain rice before, I have been poor and hungry before. What I have now, is all hard earned. You don’t know me, so stop judging me, please. I am human, and I have feelings too, just like you!
I am frantically raising funds now, because I know that nothing comes from nothing, so I must work for the best. I don’t expect handouts from the government, nor do I rely on local doctors to decide when to stop being ignorant.
I don’t know… I really don’t know anything anymore. I’m so tired of all these pain, all these loneliness, all these sufferings. I’m tired of being in silence, and that’s why I am working towards the possibility of hearing again.
All these while, God has been providing tremendous strength and support to me, and that’s how I managed to pull through. But without Him, I will collapse completely, and that’s what exactly happened this evening. I am only human, just like everyone else. I am only a weak girl trying to survive. Why do people keep judging and turning a deaf ear to my plight? All I want to do is to help myself, because I cannot rely on the government at all.
Seeing how lonely I actually feel, and how tired I am, I guess it’s time I stop pretending that things are alright, but they are not. I am beginning to have slight swallowing discomfort, and that means the tumor has grown larger. But who understands? Only myself and God.