Who is the strongest woman? Is it the woman who is the world champion in weightlifting? Is it the female manager of a giant business company with world-wide fame? Is it the female soldier at the front line? A single mother with three jobs? A voluntary nurse in the Third World? No doubt these all of these women are very strong, brave and exemplary. They are gaining all of my respect and deference.

But I met a woman who tops them all.

A 50-year-old mother of four children, married. She is sitting in the wheel chair. She is suffering from ALS, a motor neuron illness. An incurable, hardly investigated and fatally running illness with which the nerves and therefore also the connection with the muscles are destroyed in the body completely. Gradually all muscles stop working within only few years. At the end of this inevitable way is a respirator, artificial food, life-sustaining measures. The average life expectancy of the diagnosis up to the death amounts from about two to five years.

I met her for an interview I’ve wanted to write for my newspaper. I was concerned about the interview. I was wondering what questions can you asking her? Can you talk about death? Can you ask her if she knows what will happen with her within the next years or months?

Life and death are important. Don’t suffer them in vain.

Bodhidharma

 

We sat at the table and I begged her to tell me from the beginning. She got the diagnosis ALS two years ago, which changed her life and of her family since that time completely.  “It went off quite insignificantly. I noted that I had no more strength in the feet.” She stood in the middle of the life, privately as well as professionally as a freelanced physiotherapist before she heard the determining words: It is ALS. Already half a year after this diagnosis she   depended on the wheel chair. “Since that day I have to realize every day I am losing the control of my body more and more. Last week I could lift my leg out of the wheelchair alone, today I need help from my son or my man. My family and our friends perform since that time supernatural”, she said.

She told how she handles with many open talks to her family and friends. And I realized her belonging serving of black humour with the illness. She has accepted her destiny.  “I must not read constantly about that on the Internet, in books or papers and brood over it. I cannot change it anyway”, she said. Of course there are also the lonesome sad moments and thoughts of what still approaches her. However, it still pushes away them: “Everything step by step.” And so I understood: she is prepared but not desperate.

We talked very openly, we felt familiar and close. She told about her experiences as a handicapped person in a wheelchair, I told her about my mentally challenged sister. I didn’t know how much time passed away but suddenly and somehow we came to the topic of death and funeral.

“I don’t want a big thing. I don’t want momentous speeches. I am not that important. They only should remember who I was. I don’t want the people wearing black clothes. They should wear all colours of life.” She told me about her favourite music that should be played. As I imagined the situation, tears welled up in my eyes. But as she recognized my tears she said: “I don’t want to make people cry about me. I am a fun-loving person and I want them to remember me like this.”

“My big aim is to experience the youth initiation of my 13-year-old daughter. It will be next year”, she said. At this moment I thought about the meaning of time.  One year. What is one year? Only 365 days. What would I do in a remaining time of only one year? My thoughts revolved in my mind. I felt panic, fear and despair. “We don’t waste our time with sorrow, anger and fighting” she said and stopped my depressive trains of thoughts. “Because our time together is precious. We are living with more awareness and much more pleasure. It is all and the best we can do.”

 This woman taught me what it really means when they say:

Enjoy every minute of your life. Be careful with your time. Love and live whole-heartedly.

And she gave me one of the greatest and precious gifts, I will put it in my mind and my heart for ever: She shared with me one of the valuable hours in her lifetime and she allowed me to hear and tell about her story.

Recently I visited her again. Only a few weeks later it was obvious: the sickness is marching on…unstoppable, destructive, relentless… and time passes away. But she looked into my eyes still with the same confidence, openness and kindness as before.

I am absolutely convinced this is one of the strongest women I’ve ever met.

And I will visit her again soon.

written by Verena Toth

(Blogmaster)