Why has no one tried to challenge? Is this because people are being mind controlled by the medical service that immediately escapes from dealing with the problem while knowing the facts of ALS?
According to Dr. Tsubaki, some young doctors have boldly attempted to cure the disease but become frustrated midway because of the high barriers presented by ALS. He also says that gIf there is no medicine to cure ALS, we make every effort to take care of patients and then hope the natural healing ability human beings have.h
Human beings are mysterious creatures. We have arrived at this stage after meeting challenges every step of the way. What an honor it is as a patient to fight against ALS, the most incurable disease of the intractable ones! The medical progress in the treatment of cancer, which is newsworthy in a good sense, has been remarkable nowadays. For ALS which is an intractable disease relating to the nervous system, we are almost at the stage of regenerating the lost nerve cells using the groundbreaking invention of IPS cells. No one knows whether this stage is equal to a few years or a few decades. Although it is not at this moment, it could be tomorrow as medicine has progressed so dramatically.
I have heard that an ALS patient living in Chiba prefecture (Japan) wishes to be taken off a ventilator when he loses the ability to communicate. The patientfs family and ethics committees of the hospital in charge accepted the patientfs wish. On hearing this news I was relieved because this wish for death is conditionally accepted in a good sense. At least there are many possibilities he will live. However, even if the ALS patient suffering from quadruple or quintuple difficulties has a strong mindset to fight, the high barriers presented by the disease or situations in which the patient is unable to eat, smell, speak or move may force him or her to write a statement demanding death. Even so, if the family or people around the patient crave their loved one to remain alive and live out his/her life, I hope they fight against ALS instead of the patient. ALS is an intractable disease because its mechanism is unknown. Even though ALS is a disease caused from damaged motor nerves and the dead cells are not regenerated, patients' natural healing ability has been converting them. If the medical service stops treating ALS, it is the patients themselves and their families or people concerned that just have to face the disease. And as a human being it is natural to do so, isn't it?
People who proclaim euthanasia state that if there is the right to live, there is also the right to die. However, I would like to say that as we were born irrespective of our own intention, we are not able to decide the timing of our own death.
During the thirty-two years of a lifetime living with ALS and suffering quadruple difficulties in which I have not been able to eat, smell, speak and move, I have actually faced death several times. I struggled with various pains including toothache, pain due to eyelids poising on cornea, penile pain, as well as bedsores developing in my body. However, now these pains have been resolved and in addition my bottom lip which once sagged loosely has been cured. Thus, I now truly have a peaceful life.
Euthanasia is necessary for some occasions. Concerning ALS, however, I believe the day where we regret choosing euthanasia will surely come.
I will never choose to end my life. To do so means killing my organs and the 60 trillion cells that have been still working as hard as possible. I cannot allow such offensive and cruel treatment.
UPFFebruary 17, 2010@REV:February 22, 2010
Translated and Prepared by TAMURA Noriko
Proofread by KATAOKA Minoru