What would you do if you know you have only one year left to live?
How would you feel if you experience you’re going to lose control of your body more and more each day? What would you wish if you had to plan your own funeral? I know a woman who has answers to all of this.
Who could be the strongest woman? Is she a female world champion in weightlifting? Is she the manager of a giant business company with world-wide fame? Is she the soldier at the front line or a single mother with three jobs? Perhaps she is a voluntary nurse in the Third World? No doubt all of these women are very strong, brave and exemplary. They gain all of my respect and deference.
I met a woman who tops them all.
A fifty-year-old mother of four children—married. She sits in a wheel chair and is suffers from ALS, a motor neuron illness. This is an incurable, hardly investigated and fatal illness with which the nerves and connection of the muscles are destroyed in the body completely. Gradually all muscles stop working within only few years.
At the end of this inevitable fate is a respirator, artificial food, and life-sustaining measures. The average life expectancy of the diagnosis amounts from about two to five years.
I met her for an interview that I’ve wanted to write for my newspaper. I was concerned about the interview.
I wondered: What questions can you ask her? Can you talk about death? Can you ask her if she knows what will happen with her within the next years or months?
We sat at the table and I begged her to tell me from the beginning.
She received the diagnosis of 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 life, privately as well as professionally as a freelance physiotherapist, before she heard the determining words: It is ALS. Already half a year after the diagnosis and she required a 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 with superhuman strength. They are brave, understanding and hard-working,” she said.
She told she handles her illness with many open talks to her family and friends. I realized her need for dark humor to help deal with being sick and that she had found acceptance.
“I must not read constantly about that on the Internet, in books or papers and brood over it. I cannot change it anyway,” she told me.
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 that she is prepared—not desperate.
We talked very openly, and 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 but suddenly and somehow we came to the topic of death and funerals.
“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. Recognizing 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 the 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 depressing 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 to 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 that I will keep in my mind and my heart for ever. She shared with me one of the valuable hours left in her lifetime and allowed me to hear and tell her story.
Recently I visited her again. Only a few weeks later the signs were obvious. The sickness marching on—unstoppable, destructive, relentless—and time passing away. But she looked into my eyes, still with the same confidence, openness and kindness as before.
Now it is clear: I am absolutely convinced this is strongest women I’ve ever met.
She is able to carry a burden that is more heavier than every barbell. She is able to manage a family company with much more impact in the world. She is braver than every soldier at the front line. And she is an inspiring example for everyone of us.
She really knows what it means to live.
Life and death are important. Don’t suffer them in vain.
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Ed: Dana Gornall