My friend Thomas recently alerted me to Ed’s story. Ed is an American pastor, family man, all round good guy whose great joy it is to care for his people.
Ed noticed the progressive onset of symptoms of muscle weakness and twitching and after a series of investigations was devastated to learn that he had developed Lou Gehrig’s or Motor neuron disease.
This condition effects 5:100,000 people world wide. It does not affect sensation or ability to think or reason but causes progressive muscle weakness , walking difficulty and eventually choking, impaired breathing and swallowing. The condition runs a progressive course with most people surviving 3-5 years. Ed was told that he had maybe 2-5 years. There is no known cure.
Despite his debilitated condition Ed was encouraged by his wife to attend the Christmas Festival of lights at his church. “You have so much to share,” she said. Reluctantly he set out in his pick-up through the snow and ice. His cell phone rang. It was Billy with his high pitched New York accent. Billy had a 20 year past history of heroine addiction, was HIV and Hep B positive and also had a history of malignancy. He had watched his wife die in his arms and was unable to trace his son. He had every problem going.
“Ed,” he said, “you need to be a Yogi Berra Christian.”
“What do you mean?”
“I mean, Ed . . . ‘It ain’t over till its over’.”
Ed perceived the voice of God through Billy that day. Alone in his truck on that icy road those words changed his life. Every day became meaningful and filled with hope. He has now lived for ten years beyond diagnosis. He has walked his daughter down the aisle and witnessed the birth of his five grand children.
I have recently known two people with similar neurological conditions. Both were doctors.
The reaction of one was despair and depression. His muscle weakness impacted heavily on his ability to practice. Procedural work became difficult and eventually he withdrew completely from medical practice. His marriage of many years broke up and he spent his last days in a nursing home being tube fed, unable to speak and with assisted ventilation. He withdrew from friends and family and died alone.
The other was my friend Doug whose story you will find in my book “Nine Minutes Past Midnight”. Doug did not have motor neuron disease but a rare form of neurological degeneration largely affecting peripheral nerves. He also had Type 1 diabetes. Doug’s response was different. He was not debilitated by these illnesses. Rather, he focused on them as a means of maintaining his wellbeing. “‘Hypo’s are a problem but I am managing them well,” he would say.
When I first interviewed Dr Doug Penney he was seventy-one years of age. The lines of his Bible were underscored and highlighted with yellow ink, but he pointed enthusiastically to words which had come to mean so much to him:
The days of our lives are seventy years;
if by reason of strength they are eighty years
yet their boast is only labour and sorrow. (Psalm 90:10)
I listened in astonishment. Most people of his age would find these words daunting. But Doug’s take was different. “I am seventy-one” he said, with a broad smile “and this verse tells me that maybe I have ten years, and there is so much to do in that time.” I left Doug that day buoyed and greatly encouraged.
I was recently saddened to hear of Doug’s passing. He died a few weeks before my book was launched. He was seventy-nine. Doug had spent the years since our meeting with his lovely wife, Shirley, also a doctor. He had been busily engaged in counseling and encouraging others for many of those intervening years. Shirley died just a few weeks before Christmas. Their days had passed. Their mission was completed. They were promoted to Glory.
God uses people like Doug and Ed and Ed’s friend Billy to speak directly into our hearts and minds. I treasure such people. They have suffered much but in the depths of that suffering they have identified with Christ and have found hope and strength to bring to others.
Selwyn Hughes in Every Day With Jesus July/Aug 2009 quotes Gabriel Marcel’s marvelous definition of hope as ‘the memory of the future’. Hope sustains us by holding out promise for better days ahead he says. He also quotes Norman Cousins as saying: ‘The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredient in any prescription.’
Ed has well outlived his doctor’s expectation. God gave him ministry and a mission and the time to devote himself to these and see them through to completion. He knows our days and we can live every one of them to the full:
Your eyes saw my substance being yet unformed. And in your book they all were written the days fashioned for me when as yet there were none of them. (Psalm 139:16)
Most of all God has given Ed, HOPE.
You can view Ed’s story and read more about this wonderful man and his ministry at http://edsstory.com/
Yogi Berra now 86 was an American Major League Baseball player who played most of his professional life for the New York Yankees. He was also famous for his quotations.