無私的愛 -探訪小腦萎縮協會創會會長

102年12月5日中午去小腦萎縮協會去看病友們,本來預定是上星期四要去看,但因為臨時有事,所以延至今天。

到了協會,病友的狀況大部分都是坐輪椅,下午正好有瑜伽課(上到下星期,接著是台中瑜伽屋會去上兩次),有一部分病友會參加,目前上課老師看起來是一般外面的瑜伽老師。

在協會遇到創會會長,Shakti、Mainjirii和我,與會長朱穗萍,談了許多,他說他是因為家中有七個病人,一個是媽媽、三個弟弟及三個妹妹都是小腦萎縮病患,經由醫生他才知道原來有很多和他們一樣的病患,大部分這病與遺傳有關,有部分是後天造成的,而且患者通常也很窮,病友們無法得到幫助,他與家人商量決定站出來,讓大家瞭解這種病,可以透過染色體檢查避免造成遺憾,幾經波折終於成立協會,目前中部和南部也成立分會。

會長說他父親在他十幾歲時就過世,可以說他把弟妹們一個一個拉拔長大也都成家立業,大概到35歲卻一個接著一個病倒,而他只是一個公務員,薪水都不足支付這些看護及醫療費用,小腦萎縮病患,容易生病尤其是肺炎,每次住院都至少要十萬元,早些年大陸工資便宜,他就把家裡病人送到大陸去,在經濟上和心理上才得以喘息。而且他照顧弟妹也不得到家人的諒解,尤其他自己的女兒認為,他這些弟妹都有配偶有子女,為什麼是他來照顧。

 

我們覺得他好偉大,他說他不要偉大,他只要平凡。他說做任何事情,開始都是為了自己而做的,所有一切都是為了自己,他照顧弟妹,就是為了”自己”將來不會遺憾、”自己”將來不會後悔,為了這個心理上千金難買的”我的自由”,所以他甘願的照顧三個弟妹。他說就像他做很多家事,開始他認為為什麼都是他在做,而別人都不做,他轉念想是因為自己覺得做家事,讓自己感覺這家看起來舒服,是為了自己的舒服而做家事,別人覺得做或不做沒什麼差別,因為是為自己做,所以就心甘情願去做。

 

我們還談到家人與病友,他說人的愛都是從自己出發,再到家人,再擴大到社區,到社會,到宇宙的愛。他說有時為了照顧協會的病友而對生病的家人照顧就比較少,我們說這之間必須取的平衡;會長說因為家人生病的壓力,他幾乎瀕臨瘋狂的地步,他是個基督徒,但他看的書卻是慈濟、佛教的書,後來他找到一套方法,讓心裡得以解脫,他也把這套方法引進協會幫助照顧病友的家人。

受到會長愛的感動,與看到從不同地方坐著輪椅辛苦來到協會的病友,我們能不伸出手幫助他們嗎? 但是以我自己目前的工作狀況,無法每星期請假去上課,所以星期天還必須與瑪琪們商量是否要接這項工作,或是可以再找到更多願意幫忙的人,若要接則上課的方式也必須討論。

今天,真是巴巴的恩典,讓我上了寶貴的一課,從會長侃侃而談時,我看到他發亮的眼神,及散發出來無私的愛。

※ selfless love

- Visit the Founding President of the Taiwan Spinocerbellar Ataxia Association

2013 on December 5 at noon to see she has cerebellar atrophy Association, originally scheduled for last Thursday, is going to see, but because of temporary problems, , so extended today.

To the association, the condition of most of the patients are in a wheelchair, in the afternoon just to have yoga classes (up to the next week, followed by Taichung Jagrti will go on twice), some patients will participate, there seems to be general outside class teacher yoga teacher.
Founding President of the Association met in Taichung just have to come, there is Shakti, Mainjirii and me, and the president Zhusui Ping, talk a lot, because he said he was home in seven patients, one is mother,three younger brothers and three sisters are cerebellar atrophy patients , by a doctor that he did not know that there are many patients like them, most of the disease with genetic, caused partly acquired, and is connected with the poor and sick, she has been unable to help, he and his family decided to discuss stand up and let everyone know this disease, you can avoid regret, twists and turns and finally the establishment of associations, currently also set up branches in central and south through the chromosome.

The president said in his teens, his father passed away, we can say he pulled the younger brothers and sisters grew up married one by one, but when they were thirty five years old they fell ill one by one to him, but he was just a civil servant salaries are insufficient to pay these nursing and medical costs, cerebellar atrophy patients susceptible to diseases, especially pneumonia, every hospital should have at least $ 100,000 cheaper wages mainland early years, he took the patient to go home to the continent, economically and psychologically was able to breathe. And he does not get the understanding of the family to take care of younger siblings, especially his daughter believes he has a spouse with children of these brothers and sisters, why is he to take care of.

We think he's so great, he said he was not great, he just ordinary. He said to do anything, is to me and started to do, everything is for me to take care of his brothers and sisters, is to "me" in the future will not be sorry, "I" in the future will not regret it, for this psychologically difficult daughter buy "my freedom", so he was willing to take care of three younger siblings. He said as he did a lot of housework to begin Why is he thinks he is doing, while others do not, then I think it was because he felt his own housework, make yourself feel comfortable in this home looks, for their own comfort and housework, others do or do not feel no difference, because it is to do it themselves, so they are willing to do it.

We also talked about his family and patients, he said, people love is from my departure, to his family, and then expanded to the community, to society, to the universe of love. He said that sometimes in order to take care of patients associations and care for sick family members is relatively small, we say that a balance between the need to take it; president because of family illness, said the pressure he was almost on the verge of madness, he is a Christian, but he read the book but it is Tzu Chi Buddhist books, and later he found a way to let my heart be freed, he also put this method to introduce the Association to help families care for patients.

But in my own current work situation, I can not leave to go to class every week, so Sunday with Marggiis who must also discuss whether to take the job, or you can find more then willing to help people, to take the class ways must also be discussed.

Today, really Baba's grace, let me a valuable lesson from when talking about the president, I see him shining eyes, and comes out of selfless love.