Wednesday, July 8, 2009

The 4th, Lou , Irwin and me!

Rural villages and urban centers across the US find complete common ground for at least one day each year, July 4th, Independence Day. Talk about “second chances” or “new chances.” This date is a remembrance of the heroic choice for a second chance that changed the world.

Though I personally believe many who celebrate the 4th of July today have lost sight of the original intention for the holiday. Without prejudice celebrations are held with parades, music from marching bands as the odor of hot dogs and beer and the crack of a softball bat accented by the periodic rata-tat-tat of cheap firecrackers fill the smog – filled atmosphere and sun-flowered cornfields alike.
This year as we already know, Lindsay reminded me that it is 11 months to the day since my bypass surgery. Also, this year July 4th is exactly the 60th year anniversary of Lou Gehrig’s farewell speech at Yankee stadium. The “Iron Horse” of the New York Yankees was a superb specimen of American athleticism blended with gentle humility and dignity. His distinguished career was sabotaged by a neuromuscular disease so rare that the disease would take his name as well as his life.

I don’t know much about Lou Gehrig except from what I have read. My appreciation for him has grown as I have learned many lessons about life, pain and God from a couple of my companions who have lost their freedom of experiencing life by the same disease that took Lou Gehrig from this world.
I have tried to capture a little sense of a relationship with a real gentle man who was a real “iron horse” to me in my yet to be published manuscript, “Conjectures of an Accidental Pilgrim.” Below is an excerpt of one chapter from that book.

Hoping you had a free and hope-filled celebration on Independence Day.

Rubrics for Life

“Keep company with the humble and simple of heart, who art devout and of good deportment, and treat them with things that may edify and strengthen your soul.”
- The Imitation of Christ, Thomas a’ Kempis

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.”
- Coach Jimmy Valvano

"Preach the Gospel at all times. Use words if necessary”
- St. Francis of Assisi

I had offered Dan S. a job and he was taken back and asked me for a few days to answer. He was on his way for an anniversary cruise with his wife. He reported later that he couldn’t relax as he was stressed about my job offer and the potential for change in his life. He saw on the ship’s calendar that there was a Catholic Mass being offered and he darted to that location with great anticipation to discover peace and consolation. The gift would be greater than he expected. Dan retells the situation the priest told a form of the following story as part of his homily.

There were two boys in a small town named Dan and Johnny (The priest got Dan’s attention immediately with the use of these two names.), These two boys were mischievous and were always getting into some kind of trouble and it was well known that if any mischief occurred in their town, these two boys were probably involved. One day Dan and Johnny were having a catch with a baseball when Johnny threw the ball over Dan’s head crashing through a stain glass window of the local Catholic Church just as Father Lou was cleaning out the pews from the earlier mass. Dan split for home and John risked going in to the church to find the baseball. The clergyman, a huge man with a booming voice, confronted John as he entered the church as he held the baseball and shouted” Do you know where God is?”. The Johnny’s mouth dropped open, but he made no response, sitting there with his mouth hanging open, wide-eyed. So the clergyman repeated the question in an even sterner tone, “Do you know where God is!” Johnny was upset and tense and at a loss for words. So the clergyman raised his voice even more and shook his finger in the boy’s face and said let me ask you another way, “WHERE IS GOD?” Johnny bolted from the church ran directly to Dan’s house. Dan brought Johnny in and looked at the out of breath friend and queried, “What’s the matter?” Trying to catch his breath Johnny said, “Pack your bags quick, we’re in big trouble. God is missing and they’re blaming us!”

Dan S. took this experience as a coincidence of sorts and a sign that we need to work together. We did work together and it didn’t work out but that doesn’t mean that the experience of working together was not worthwhile and fulfilling. We did laugh a lot, worked hard, and argued a time or two. But I can still recall taking night walking journeys with an imitation Cohiba cigar in silence along the sparsely lit pathways of the White House retreat grounds. No words were spoken. No words needed to be spoken. Whether we were privately thinking about the reflections given by Fr. Frank or wondering about the autumn night constellations we were connected . We were companions.

“Make your ways known to me, O LORD, and teach me your paths.” Psalm25:41
God was with us ,in us and around us. God was not missing.

Irwin was a student in the disabilities program at the state university that I managed. The last email he sent to me was only days before we received notice that he had passed. He said:
“It is so nice that you still think of me. When you
are bitching and complaining about what ever thinking of what hell I am going through. Thank you for the prayers. Nice to say that you miss me. I am so Isolated. Good that you like your job. You make me cry when you say things like (contact me....You have meant so much to me that I
can’t begin to express and thank you.)”

He first arrived in my life just over twelve months before he would leave this world. He was silent. He could walk slowly and one could notice that he had some difficulty carrying him and moving his legs. At first he was suspicious about how could a technology training program for people with disabilities help someone like him. He applied to the program but he came with a chip on his shoulder that I really didn’t understand at first. (I was a consultant hired to set up and manage this special technology based training program for people with disabilities.)He was a former sales executive for a major telecommunications company and a former NY chef.
I knew this by his application as his silence was due to the fact that he could not speak. He would roughly scribble in pencil or pen on his small spiral note pad his concerns and issues about the program. “No one can help me. Why would anyone try to help me?” were just a few of his initial communications. I told him that if he gave us, the program and our teachers, a chance maybe they would could help him learn a new skill and possibly gain some fruitful employment. “Who’s going to hire someone who can’t speak?” he would write quickly. I thought that this guy was self-sabotaging himself by not giving himself or us…or me a chance to help him.He told me he had PLS (Primary Lateral Sclerosis.) Much like ALS, Lou Gehrig’s disease that affected my former companion Rob, PLS is a disease of motor neurons. It’s progressive and causes nerve degeneration. But unlike ALS, PLS affects primarily upper motor neurons—those whose nerve cell bodies are in the brain and which deliver impulses to, and thus control, the activity of lower motor neurons. After doing some research on my own I discovered that PLS can often be misdiagnosed. Unlike ALS, PLS patients can have a normal life expectancy but their lives would not be “normal” as it could become completing debilitating.

I queried about why he didn’t have an assistive speaking device where he could type and the small computer type machine would have a mechanized voice speaking for him. He explained that he had one that was broken and that the state agency would pay for another or fixes the one he had.This then became my first mission to attempt to gain Irwin’s trust. Maybe I could show him that there are those outside of his close circle of friends who really care about him and would love for him to succeed. With the advocacy of his compassionate state agency counselor he was able to secure a new assistive device.

Early one morning Irwin slowly made his way down the hallway with a big boyish grin from ear to ear. Strapped across his shoulder was his new communicator. He placed it on my desk and slowly, very slowly he tapped the touch screen with a broken pencil. I asked if he had some type of screen sensitive stylus. He was embarrassed to tell me that he lost it shortly after he got the communicator. Our conversations would become long time consuming affairs as Irwin still hadn’t learned the “short cuts” of the device and his typing skills were of the hunt and peck method.

Irwin and I would schedule time together once per week to “speak” about how the class was going and how he was progressing and how he was feeling (physically and emotionally.) We had to schedule this time as he seemed to want or need to talk and I was one in our location or maybe in his life who would listen. Pat R, a former client of mine once said that I “give good ear!” Irwin would show his appreciation by bringing me breakfast, bagels, juice, and coffee on appointment days. His meal bringing activity increased. Almost every day he attended class he would bring me some type of breakfast. We couldn’t share the meals together as Irwin could not eat. When we first started our relationship he could sip soft foods and liquids through a straw. Within a few months he had to be fed through a tube. When I sat there eating his food in front of him I felt guilty and humbled. He always brought extra napkins as he could not control the saliva slipping freely from his mouth and he or he and I would wipe the sliding saliva running from his chin to this shirt and slacks.

There were days when he would really surprise me with a special soup or luncheon dish he prepared for me. He even fixed a very nice baked ziti dish for his whole class at the end of their program.

But it wasn’t always good for Irwin or for Irwin and me, some days he would come to our meeting with no food for me and I was slow to learn that this was a sign something was up. I was brought up feeling that most of us can have good days and bad days and how oftentimes we are confident that when confronted with the bad days we realize that soon good days will come return. For Irwin he would have bad days and then worse days and he would have to do a lot to make his bad days seem somewhat palatable. At first when I would see him in the hallway without breakfast for me or if he didn’t show for his appointment I knew he was having a bad day. And if we did meet when he was having a “worse day” his attitude surfaced as anger at me, those around him as well as his situation. Some days he would ignore me completely or send me a nasty email about how he was wasting his time and how I didn’t care.

Then there were the days when he would come in to my office and just cry. The sound he made was a moan as the tears flowed as rivers of anguish. “I am going to die,” he would say. “No one cares,” he would type into his communicator. I prayed in silence for him and asking God to do whatever God could to comfort Irwin and to give me the wisdom and the words to comfort Irwin. I too wanted what Irwin wanted; I wanted him to be well, to be healed.

Then there were days when our spirits were up and we laughed at almost everything. We were like two little children with uncontrollable giggles. Maybe it had to do with the knowledge that Irwin would not get any better and our laughter are only relief .Our ability to laugh seemed to be the indicator that God was not missing. I would tell Irwin and at times email him saying that I am keeping him in my prayers. Then came the day when the that piece of our world ended, the dye had been cast, the cross had been prepared, he told me that he was re-diagnosed and that he had ALS (Lou Gehrig’s disease.) The doctors said it was terminal. We cried together.

I prayed intensely for him. Depending how he felt at the moment when we were meeting he would say to me “Your prayers are not working.” My heart would sink, as I was not able to help him, to give him some relief or even make him smile. Then on other occasions he would send me emails saying how I was his angel and how he appreciated my prayers. He didn’t know that he was my angel. I felt that I did not deserve to be labeled an angel of any sort. Besides I felt doubtful that my prayers were being heard or had any effect. “Where are you God?” I would shout with an inner scream. ‘Why are you missing?”

I became lost in helping Irwin work his way through a job fair. He looked the consummate professional in his business suit. I was shocked as the corporate suits - recruiters who seemed to be intimidated by his appearance and the use of his device. I became the indignant voice for Irwin.”How dare they”, I thought. “He is bright and he can do the work of twenty of these other applicants.” Finally I had the opportunity to have the man who referred me to this job who was CEO of a small technology company offer Irwin a part time internship. At first Irwin was hurt as it was not full time. Then to make matters worse the CEO’s company experience a serious downturn. He had been given another “bad break” and the potential job had evaporated. I pleaded with the CEO to reconsider but in this case integrity and hope lost out.

“Pray that your loneliness may spur you into finding something to live for, great enough to die for.”
- Dorothy Day

Recently I read James Martin SJ discussing how he used to pray and what saints he would implore for assistance. I can identify with his words as I also grew up praying and continue to pray to Saints such as: St. Jude, the patron Saint of hopeless cases; St. Anthony, to help me find the peace I have lost, St. Ignatius for the strength and wisdom to do God’s will without seeking reward; Thomas Merton, to help me realize God’s presence in my life; St. Joseph, to help me be the proper father and to find joy in my work; Jesus, to help give me strength to trust him all ways and to find His peace that passes all understanding; to the Holy Spirit , for confidence and wisdom to be complete as god intended me; and, to God the Father to be with and bless my daughters all ways and to guide and protect family and friends every day. I named all these and more to lift up Irwin from his pain, his fate.

Practicing the examen daily helps me pray in gratitude for God’s presence in my life and it also is a reminder for me to seek God out in each breath and each beat of my heart. I am hope-filled that the hour or so I spend in prayer each morning is enough to keep me going throughout the day. Every dawn I promise that I will try to stop and pray and be grateful and attempt to be present to God in all things. However, I know myself and I often get distracted. That’s where my ignorance, self-centeredness and arrogance as human sinner kick in. I can get attached to my own busy ness and perceived needs in this world that keep me from connecting actively with God. Yet, this morning time helped strengthen me to be a chalice filled with peace to pour into Irwin’s needy cup.

When I was particularly stressed I would pray the rosary daily. On the plane rides on business trips I would not hesitate in taking out my Venezuelan hand crafted rosary beads or the ones I had purchased at my first White House retreat. I haven’t said many rosaries on behalf or Irwin or those others with disabilities I have encountered.

Early on in my faith journey I made a point of reading the bible word by word, passage by passage, page by page and highlight or notate with a pen particular passages that seemed to strike me. It was as if I was back in school reading some textbook that I would be tested on. I would read the complete bible over and over again.

When Ginny gave me a gift of my first bible she went to a Christian bookstore and asked to purchase a bible. The clerk asked “which one?” Ginny retorted “The Holy One.” “No I mean which version,” the clerk said. Ginny innocently responded “God’s.” But she finally realized what he meant and she told him one that a catholic would read. Then he asked her what color and exasperated she just said the Black leather one. I am not sure God cares which version I read.

When I first started reading the bible I would do so late at night in the living room. Admittedly I felt a little self conscious and embarrassed t a degree that I was reading this book and seeking some great consolation or insight. One night Lindsay who was about four or five year’s old got up from bed and found me out on the couch. She asked what I was doing and I told her I was reading the bible. The truth was now out in the open. She continued her query by asking what the bible was and I told her it was God’s book. Then with eyes wide open and delight in her voice she asked, “He let ---you --- have it?”

Not too long afterward I bought Lindsay her first bible, a children’s version for her birthday. Then we saw her in the neighborhood carrying this pink leatherette book going to her friends telling them about how she now had God’s book!!! I was embarrassed thinking that the neighbors might think that we were a family of religious fanatics trying to convert the neighborhood.

With the help of the late Fr. Bob who was my spiritual director when Fr. Lou was on assignment in Ireland, he helped me to learn how to pray with the bible every day. He taught me the Lectio Divinia.This is a very dynamic method of meditative and contemplative prayer using the passages from the scripture to speak directly to one’s spirit. It has no real goal except that to be completely in the presence of God and to allow God to speak directly to our hearts. The Bible must have answers, I thought. It is the word and voice of God. Why don’t these words help Irwin? Where is that wireless prayer router now with the infinite connection when I need it?

Being a former practioner of Transcendental Meditation in the 1960’s and a self taught Zen meditator I found an affinity for centering prayer. Much like eastern meditation it is a method just to “be present.” At times with this type of reflection I would use the Jesus prayer as a breathing mantra. (Breath in. “Jesus Christ I am a sinner”…breathe out… “Have mercy on me.”) It can be a relaxing and connective peace-filling experience. I did not know how this would help Irwin but it did console me.

I can honestly say that with all confidence that I am not sure that I pulled out all the prayer stops for Irwin. I needed an assistive device, a communicator like Irwin had but one where I would know that God was hearing me. The device needs to speak in a clear voice so God will understand this mute. What was all this time and prayer for? Where was I going wrong? Was Irwin right in that no one could really help him? I get up each morning and when it is not too cold or raining I sit out on my deck which provides a small vista of nature, of trees, plants, a small flowing stream and the birds, and the birds, and the birds…. chirping and singing. The predawn meditations are in gratitude for this day, my awakening to a new day and gratitude for this opportunity and that I will not screw up as I did the day before. But what of Irwin, and those who have his disease and those with disabilities? How do they wake? How does God bless them? I prayed that I would get some consoling answers from God somehow someway. I do know that all that prayer for Irwin was prayer of gratitude for him and about him for having God placing him in my life. Irwin and I had shared stories and my humiliation and pain was nothing close to what he had suffered and yet he did take the time to thank me for being there for him. The plan for my journey did not have this program, the disabled or Irwin anywhere on my spiritual radar or map but I am overwhelmed with the grace that God has provided by bringing Irwin and those with disabilities in to my journey.

One of the other students in Irwin’s class in the program was a partial amputee. He had never really had a job and told me that for most of his life that he was a street pharmaceutical salesman. He had lost his leg during a “transaction.” His name is George and he told me that he was a praying man and he thought about how God brought him to this program. Well, months after he graduated from the program he told me of how he finally secured his first paying job ever. He sent me an email that said that he thanked God for me and that I had touched him in ways that I will never know. I mention this here, as hopefully it is somehow a justification for me that I did touch someone while I worked with this program for people with disabilities.

Thinking back upon the commencement ceremony of the first class in the program I recall Irwin not wanting to attend. His girlfriend and his social service counselor brought him to the ceremony. When I called his name to come up and receive his diploma he could just about walk. Holding a handkerchief to his mouth as the saliva began to pour and we wept together as he fell into my arms.

Months later I had left the program and Irwin and I would send each other intermittent emails. Once in a while he would have an “assistive telephone” call with me where an interpreter would speak what Irwin had typed on his device. It was strange hearing some other person’s voice speaking for Irwin. Yet, I was grateful for our relationship no matter how unusual it was. A former associate emailed me early one morning forwarding a message from Irwin’s lady friend. Irwin had passed. I sent the following prayer to Irwin’s girlfriend and significant companion. I think it was more for me.

Do not stand at my grave and weep
Do not stand at my grave and weep,
I am not there,
I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there.
I do not die.
- Mary Frye

I know now that Irwin is free. He is free from his worldy suffering and human pain. He is comforted and at peace in my heart and within the universe. He helped me to know andtaught me how live a better life. I guess that’s what real "Iron Horses" do. Thank you Irwin.

“…I'm pressed but not crushed persecuted not abandoned, Struck down but not destroyed
I'm blessed beyond the curse for his promise will endure
And his joy's gonna be my strength
Though the sorrow may last for the night
His joy comes with the morning”

- Trading My Sorrows, Darrell Evans

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