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我還清楚記得小時候如何跳舞，生活一直健康快樂，直到4歲時，突然發了一場可怕的高燒。雖然事後我並不能清楚記得有多可怕，但我永遠不會忘記有一次，我盯著自己的手，我的手拿著鉛筆強烈地顫動。作為一個4歲的孩子，我不明白發生了什麼事。想不到我的整段歷程就此展開。
父母緊急送我進醫院，醫生說我得了一個非常罕見的疾病叫“拉斯穆森腦炎”。每個腦炎患者可有不同的症狀，就我而言，我的右邊身體會強烈地顫動，好像每一秒都在收緊。醫生向我們講解通過手術切除我大腦一部份或會令我痊癒。這風險相當大：可能會導致腦損傷，從而令我失去正常思考、說話或活動的能力，最壞的情況是會喪命。我的父母不想冒這個風險。
於是父母作了一個決定：去香港治療。突然間，我很快就要向家人和朋友說再見。
我的爸爸和姐妹們留在荷蘭，所以爸爸的生活沒有了妻子，姐妹們則沒有了母親，而我媽媽每天帶我去見不同的醫生。
我每一晚都很難過。因為極度痛楚而整整一年不能睡好覺，這可能也防礙了我身體的正常成長。疼痛的感覺就像手臂不斷被刀插。我沒有時間上學，治療取代了教育。我已經嘗試了所有類型的醫生、治療和藥物，不斷的接受治療。
我已經無法計算我嘗試了多少種不同的治療方法，總之就是很多。我想我已幾乎試盡了所有可行的治療。從最技術性的至最靈性層面的，從最輕鬆的至最痛苦的都試過。幸運的是，媽媽一直堅強地在守候在我身邊，不管她有多痛苦或疲累地看著女兒接受治療。她從沒有抱怨，總是在我最需要的時候不停握著我的手。
我們一次又一次賦予著希望，但最終都成空。每個醫生總是告訴我們，他們能如何治癒我，可是承諾都不能兌現。原因可能是沒有一個醫生知道我的病因或知道這是甚麼病，也許他們根本沒有試圖去找答案。浪費了這麼多的時間和金錢，每次的承諾都導致失望，我已經對醫學界失去信心。
經過兩年半，我終於回家。當時我已經7歲。我仍然有一些殘留症狀，但顫動和痛楚已經減少。我需要恢復我作爲孩子的生活。然而，我的身體隨著時間出現越來越多問題，例如39度脊柱側彎和闌尾炎。最慘的是自從進入中學之後，身體本來輕微的疼痛在不斷惡化。每一次洗碗、書寫或背起背包等都很費勁及令我更加痛。即使拿著一瓶水也變得越來越困難。即使坐著不動也會加重疼痛，上學更是越來越辛苦。
去上學都成為長達五年的掙扎。為了上學我強忍痛楚，結果導致進食和睡眠失調。在某些夜晚疼痛到不能入睡，我就用食物來撫慰自己，一吃可以好幾個小時，這已成為惡性循環。
疼痛隨著年歲月增長而變得更糟糕。14歲時，疼痛已經從脖子和肩膀蔓延到頭、兩隻手臂以及手腕。
再一次，我不得不在荷蘭看醫生，不過，我不願意再去接受治療，我不知道應該如何重新找回我的意志。每一天都感到身體和精神變得越來越虛弱，要一直躺在床上與家人和朋友們過生活。17歲時，我把自己關在房間孤立自己。日子過得越來越慢，我精神都出現問題，做夢想著死亡可以怎樣將我從無盡的苦難和痛苦中釋放。
2017年夏天，當時我18歲。媽媽告訴我，我們要再次去香港治療。我聽到這消息就淚流滿面。我非常理解媽媽十分渴望我的疾病和痛苦得到醫治，但每個醫生說“你會好起來”都是最大的謊言。我深信沒有人能醫治，不管那是甚麼樣的治療方法。
媽媽讀到了一篇文章，寫一個癲癇孩子通過經筋治療而徹底好轉。她立刻與鄭教授聯絡。鄭教授安排到預約，正好就是我抵達香港那天的較後時間，因為湊巧有人取消了她那天的約期。我覺得這麼巧也許是命運的安排，就重拾了點點希望。
經過12小時的長途飛行到香港後，因要在飛機久坐，我的疼痛又惡化了。然而，鄭教授的治療完全改變了我的想法和心情。只是接受一次的治療後，我感覺好多了，我感到頭頸不再沉重了，身體變得很輕鬆，疼痛這麼快就大大減輕了！
每次治療後，都減低我內心深處不信任的感覺。尤其是黃教授讓我相信我居然可能會痊癒。就在我們將不得不返回荷蘭的前兩天，黃教授專程從台灣到香港，儘管他的治療是我試過最難熬的，治療的時間卻過得很快。我一直想像生活中沒有疼痛和疲憊不斷的感覺，這是我第一次能夠告訴媽媽，這是怎麽樣的感覺。
回到荷蘭的家後，我決定繼續接受較長期的治療。我決定接受挑戰，用半年的時間以求變得更好。在這段時間裡我學到了很多東西，我非常非常感謝這段經驗。
鄭教授告訴我健康的食物是多麼的重要。她解釋說，要根據我的血型來飲食。例如，我不應該吃麵包，因為明顯很多人造的營養素是不利於我的健康。此外乳製品也對我的健康不利，不適合我的血型。當然還有各種垃圾食品、薯片、餅乾和糖果我也應該戒除。雖然我想吃點糖果和餅乾來獎勵自己，這在我看來是可以接受的。在改善飲食的幾個月，我感覺前所未有的好，精力充沛！這才意識到我是如何被各種不良、化學的食物磨爛自己，搞得每天都萎靡不振。
我每星期被鄭教授治療三次。她總是關懷及真心關注我個人，經常問及我的感受，提醒我健康對我多麼重要及永遠不要放棄。她常常表達她對我的愛和理解。
因為語言不通，我未能常常跟鄭教授的助手 Ricky 溝通，但我永遠不會忘記他曾經對我說過的話：“過去的已經過去了，發生的事情也發生了，你不應該擔心。你唯一可以做的事情就是向前看。”這句話深深的刻在我心坎裏。
說實話，我一直期待著黃教授每月第二週的治療。他會告訴我，我的肌腱太短，所以他不得不延長我的筋。雖然他的治療令我尖叫及大哭，但他的幽默總是令我破涕為笑。
需要紙巾？或拖鞋給你咬著？
我注意到我越大聲尖叫或者在痛苦中大笑，他就笑得越燦爛。我就開玩笑說他真壞，因為他“暴力”。但事實上他絶對不是壞人。我整個人生一直去見不同的醫生，他們都有自己的目標，就是做妥他們的工作。不過，黃教授和鄭教授是更進一步：他們不僅要把工作做妥，而且真的希望治愈病人，我可感受得到。
治療帶來的每一秒疼痛，都化作下一刻的喜樂。治療得越疼痛，越可以減低生活上的痛苦，療效越大。這需要兩位教授更多的付出，我深深敬重他們。
我可以說現在疼痛已顯著減少，右邊身體也少了很多顫動。我可以安坐較長時間，這也讓我成功地寫下我這個故事而不致令痛楚惡化。由於疼痛減少了這麼多，我能夠過健康的生活方式。我吃得更好、睡得更好，我可以告訴大家，我現在快樂得多了。我欣賞生活中的每一樣微細的事情。這一切都歸功於黃教授和鄭教授，我對他們不勝感激。
給每一位正在閲讀這個故事的病者或人士：永遠不要放棄。
因為你需要經歷地獄然後愛上天堂。
安妮 (天恩)
2018年5月30日
病人母親看到的癲癇症孩子醫案:
http://www.jingjin.com.hk/index2.php?page=case4
病人母親在2017年8月15日的分享:
http://www.jingjin.com.hk/index2.php?page=case20
I can still remember clearly how I have been dancing through my days when I was still a young child. I was living happy and healthy, until I suddenly got a terrible high fever when I was 4 years old. Though I cannot remember clearly how terrible it was then. However, something I will never forget is how I once were staring at my own hand, shaking heavily while I was holding a pencil. As a 4 years old child, I couldn’t understand what was happening to me. Little did I know this was where my whole journey began.
As fast as my parents could, I was brought to the hospital. The doctors told us that I have an extremely rare disease called “Rasmussen Encephalitis”. Every Encefalitis patient may have different symptoms. In my case, it was my right body shaking heavily as if it is tightening every second. The doctors at the hospital explained to us how a brain surgery where they would remove a part of my brain may heal me. But there was a fairly big risk involved: the chance of getting a brain damage, which could have made me lose my abilities to properly think, speak or move; or worst case scenario, my life. My parents did not want to take that risk.
For this reason my parents made a decision: treatments in Hong Kong. Suddenly and quickly I had to say goodbye to my family and friends.
My father and sisters stayed behind in the Netherlands. So my father was living without his wife and my sisters without their mother, while my mother took me to various doctors every day.
Every night was tough for me. For an entire year I could not sleep well, because of the extreme pain I have been suffering. That may also be the reason why my body has been unable to grow properly. The pain felt like a stabbing knife in my arm. My treatments were replacement for my education. There was no time for school. I have tried all kinds of doctors, treatments and medications. From treatment to treatment I have been brought to.
I have lost count of how many different treatments I have tried. There are just too many. I think I may have tried almost every available treatment out there. They range from the most technical ones to the most spiritual, from the most relaxing ones to the most painful. Fortunately, my mother has always been by my side and kept herself strong no matter how painful or exhausting it has been to see how her daughter was getting treated by some doctor. Not a single time has she ever complained and she always kept holding my hand when I needed it the most.
We have gotten hopeful time after time, which is unfortunate actually. Every doctor have been telling us how they were able to heal me and how promising they were, but every single promise has ended up broken. The reason was probably that none of the doctors ever knew what the cause of my disease was and what exactly kind of disease it was I am suffering, or at least trying to find out. So much time and money have been wasted. So many promises has led to disappointments. I lost faith in the medical world.
After two and a halve years it was finally time for me to go home. I was already 7 years old. I still had some residual symptoms, but the shaking and pain has been reduced. It was finally time for me to resume my life as a child in the Netherlands. However, as time went by more and more physical problems appeared. Such as 39 degrees scoliosis and appendicitis. But the worst one was the then minor pain in my body that has been worsening since I entered middle school. It got worse every single time I had to use strength to do something, like doing the dishes, writing or wearing a backpack. Even holding a water bottle was getting more difficult for me to do. Even sitting still worsened the pain, resulting going to school was getting more and more difficult for me.
Going to school became a five year long struggle. I was forcefully ignoring the entire pain to go to school, as a result I have gotten eating and sleep disorders. At some nights the pain was so heavy I could not fall asleep and was eating for hours to soothe myself. It has become a vicious cycle.
The older I got, the worse the pain became. At around age 14 the pain has been spread out from my neck and shoulders to my head, both my arms and wrists.
And once again I had to visit doctors, but this time in the Netherlands. However, I was losing my will to go to treatments and I did not know how I should get back my will again. I was starting to feel weaker both physically and mentally each day. I had been spending my days more in bed than being with my family and friends. At age 17 I was isolating myself from everyone by shutting myself in my room. Days went by slower and before I knew what was going on, I have ended up in a psychiatry, dreaming how death could release me from my endless suffering and pain.
Summer 2017, age 18. My mother told me we would be going to Hong Kong in the summer for treatments once again. After I had heard it I burst into tears. I understand very well how my mom wishes me to heal my disease and pain, but getting better is the biggest lie every doctor has been making. Nobody is able to heal me no matter what kind of treatment I would go through, although that is what I thought.
My mom found an article about a child who had epilepsy. This child has gotten completely better by a treatment on his tendons. My mother immediately got in contact with the doctor. Dr Zheng could made an appointment right after I would arrive in Hong Kong, because coincidently somebody cancelled his appointment for that day. I thought this coincidence might be fate, which made me feel a little hopeful again.
After the 12 hour long flight to Hong Kong my pain had gotten worse again, because I had to sit still for way too long while being in the airplane. However, Dr Zheng’s treatment completely changed my mind and mood. Just after one single treatment I was feeling so much better. Instead of a heavy neck and head, I was feeling as if my body was very light. The pain was so much reduced so fast!
The distrustful feelings I had deep down got less and less after each time I got treated. Especially Dr Huang made me believe that I actually might get healed. Two days before we would have return to the Netherlands he travelled from Taiwan to Hong Kong. Despite his treatments being the most painful ones I ever had experienced, time went by fairly quickly. I have always thought how it would be to live without feeling pain and exhaustion constantly. For the first time I was able to tell my mother that I was starting to get an idea how that would feel like.
After I had gotten home in the Netherlands, I decided to continue this treatment for a longer time period. I decided to take the challenge to get better once again for halve a year. In this period of time I have learned so many things and I am very, very thankful for this.
Dr Zheng told me how important eating healthy food actually is. She explained that I should eat a diet based on my blood type. For example I was not supposed to eat bread, because apparently there are many modified nutrients which are bad for my health. Also dairy products has been bad for my health according to my blood group, she explained. And of course all kinds of junk food, chips, cookies and sweets I should abolish. Though, I would like to reward myself by eating sweets and cookies, which is acceptable in my opinion. So I have been on this diet for a few months and never have I felt so good and energetic! I just realized how I was stuffing myself with all kinds of bad, chemical stuff which made me feel as if I am tired and sluggish every day.
Three times a week I got treated by Dr Zheng. She was always treating me with care and was genuinely interested in me as a person. She often asked me how I was feeling, kept me remembering how important health was for me and to never give up. Her love and understanding for me were always showing to me.
Even though I could not have spoken to Ricky, Dr Zheng’s assistant, because of the language barrier, I will never forget the words he once said to me: “The past has passed, what happened has happened. You should not worry about that. The only thing you can do is looking straight ahead.” These words have hit me very deeply.
To be honest I was always looking forward to every second week of the month, where Dr Huang would treating me. He taught me that my tendons were too short so he had to extend my tendons. Although I always had to scream and cry because of the extreme pain from his treatments, I always got cheered up by his humour. He always made me smile after I have cried.
Need a tissue? Or a flip-flop to bite on?
I noticed the louder I screamed or laugh from the pain, the bigger the smile on his face, where I joked about how bad of a person he is, because of his “violence”. But the truth is, he is everything but a bad person. In my whole life I have been visiting and meeting doctors. They all had their goal, which is doing their job properly. However, Dr Huang and Dr Zheng took a step further: not only do they want to do their job, they genuinely wish to heal their patients. I felt that.
For every second I was feeling pain from the treatment, I was experiencing more happiness the second after. The more painful their treatments, the more the pain got reduced, which required more strength from the doctors. I deeply respect them.
I am able to say that my pain has been reduced significantly. My right part of my body is shaking a lot less. I am able to sit still for a longer time, which has allowed me to successfully write down this story of mine without worsening the pain too much. Because the pain is reduced so much I am able to live a healthy lifestyle. I eat better, I sleep better and I can tell that I am a lot happier. I appreciate every small things in life. All thanks to dr Zheng and dr Wong. I can’t tell enough how grateful I am for meeting them.
To every patient or person reading this: Do not ever give up.
Because you need to experience hell to fall in love with heaven.
Anny
30 May 2018
