Action for Love!
I’m an ALS patient, suffering from the horrible disease at stake. For your better understanding of the ALS patients’ life, I have used all my physical strength to write down all the words here. Please kindly imagine the difficulties I faced during the writing: move the only one finger joint to click the soft keyboard with the hum of breathing and trembling hands.
ALS may be a strange name to you, even you have never heard of it. Stephen William Hawking, one of the greatest Physical Scientist who has been probing the secrets of the universe for all his life, who can only wink his eyes, is an ALS patient.
Motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a terrible neurological disease. The basic pathology is that the neurons cells in charge of movement die of the unexplained reasons and the muscles of the body are gradually shrinking, leading to paralysis, aphasia, dysphagia and dyspnea, and finally leading to death due to inability to breathe . The cruel thing is that the disease do not affect on people's feeling and thinking. The patients who lose their daily living ability slowly seem more perceptive, quick thinking, and watch a little bit of their own body being eaten, the body frozen. So the medical profession names the patients vividly as Amyotrophic Lateral Sclerosis people.
My net name is Han Liancao , 48 years old, diagnosed as ALS in the summer of 1998. Before that I was a strong and industrious teacher. As a typical ALS patient, during the 14 years struggling against ALS, I broke the “3-5 years” prophecy, the so called average life cycle of the ALS patients, and also witness the hard life of my ALS friends and their families.
On the way of fighting with ALS, lots of ALS families spent up all their money, even some of their wives and children separated from the patients. From the first moment of pronouncement of the doctor__ this disease is the world's problems, no way to heal, the prognosis is not good, also cancer than cancer_our sky is collapsed.
I can not recall the painful past. Our future is gray. The footprint of ALS patients has condensed a lot of blood and tears. The ability of taking care of themselves, and doing anything has lost. They must be inseparable from the care of others. The little pathetic dignity and privacy as persons were mercilessly torn to pieces and they began to feel what is the real living death. Sleep, is no longer a comfortable rest. We know our bodies press our hands; we know a mosquito is biting us; we know the hot or the cold, but we cannot turn over our body, we can not do everything. We can do nothing but whisper ‘yiyiyaya’ and endure.
Eating is a hard time now, for about 2 hours with terrible chokes. I cannot find the word to describe the pain, convulsion, short of breath... palpitation. For the Deaf and dumb they have sign language. We have no way to communicate with the others. The emotion door is shut tightly. We cannot express our happiness, our angry and our sadness. Joys and sorrows, ups and downs can only hold back in silence, as if our hearts plug with knife. Gastrostomy and tracheostomy are the operations that we must be done. The late terrible scenes of these diseases always rise before our eyes. Fear, anxiety, mood is bad to the extreme. It is really a case of not being heard by anyone. We are almost mad.
My God, what on earth we have done for the horrible punishment? Why are you so cruel to me? Why not end my painful life? Why I am not an idiot or a madman!
The Taiwan ALS author Mr. Chenhong said, living with an incurable disease is a progress of life enrichment. They bring us not only the endless pain, but also the iron will, and the precious true love. After the May of 2010, because the new nurse was not familiar with my situation, I almost died for several times. I was divorced. My parents were too old to look after me. I live alone with the only RMB1000 salary. My living conditions are very difficult. I am on the edge of poverty. In desperate situation, I can only write my painful life in the blog.So I talk to my friends via the web, I write down my happiness, my sadness on the net. The struggle is in despair, despair in struggling. I lament that life is fragile and helpless. Patients and friends have the same feeling. They are anxious to help me, but they do not how to. Facing disaster I seem fall into abyss .For every minute, I despair in the feeling of helpless.
It’s the China Institute of Doctor, the“Melting the Frozen Heart” welfare program, giving their hands at the critical moment. Miss, who has communicated with me for a long time, was too worried and could help crying when she saw my articles on the web. She called for volunteers to donate and looked for a new nurse for me. Warm hands were offered from Beijing, Xian, and Xiamen. It’s the prologue of love.
The volunteers donate for my nursing fee. I thanked for the penny and cheered for a gold coin. Miss Wang, she put her own job aside to seek a new nurse for me. She was too tired and sick but never gave up. During those days, I was so moved by them and cried for the warm love.
Now, my life goes calm. The nursing fee is shared by the volunteers. In China, there are estimated 200000 ALS patients. They are struggling on the edge of death. Some of them are even worse than me. The love and help I received encourage me to try my best to show the real life of the community to the public.
Till now, you are maybe moved by the painful life of ALS community and the dedication of the volunteers. You may not imagine that there are so many people who live in the hell on the earth. Yes, many catastrophes are out of the control of the human beings, but we are proud we have love.
My dear friends, with one light click, please access to our MND Forum （
http://bbs.uonew.com/forum.php）, here you can meet lots of optimistic ALS patients and dedicated volunteers. They are working hand in hand for greater power to help more patients.
So, if you can, please help forward this message to the government head. We need: enjoying the same medical service and benefit with cancer and AIDS patients, asking for more support to the ALS volunteer team, giving us a special help as a disabled person. We are the weakest and most painful group in the Chinese 80M disabled community. Please kindly don’t forget us, and give us a little comfort.
If you are successful people and read my article by chance, please kindly donate some money to set up an ALS Fund. Your philanthropic behavior will bring you more luck and treasure.
If you are common people, we still need you to become our allied force. Please help forward my words to anyone you know. That is also very helpful. If you are also in trouble, it does not matter. I wish my article could give you some courage to conquer difficulty. Of course do not forget to pass my difficult words to your friends. So more and more people can understand us and care our vulnerable group.
Nobody likes disaster and disease, a little contribution may not affect your life, but it can save one life, one family. A cushion, or a wheel chair, will make an ALS patient’s life different, color his fragmentary life!
2012-03-06·Kunming
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发表于 2012-3-15 18:54:25
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发表于 2012-3-15 20:49:26
发表于 2012-3-15 21:05:27
