I LOVE YOU FOREVER
by Forrest Church
April 27, 2003
Speaking last week about "Love and Death," I said at one point that you are my teachers. That was not a rhetorical flourish. I learned more about what really matters in life during my first year in ministry here that I had before throughout the entire twenty-nine years that proceeded it. You who were in the pews back then learned something that year too. You learned patience. "Be patient with him. He’s young. I’m sure he’ll learn." You still may be unaware that it was you who taught me.
I often say that I didn’t become a minister until I performed my first funeral, which is just barely an exaggeration. The funeral itself taught me little, and I tremble to think how halting must have been my personal contribution to that service, how scripted and formulaic its words. No, the sacrament that truly ordained me was one of love and tears.
Two weeks ago, I met with our Coming of Age class. Next Sunday four of our young people will share their personal credos with us, two at each service, and then Galen will celebrate their passage in a rite of confirmation. To be invited into their presence as they begin to codify their own beliefs–what really matters to them–not by wrote, as in many other faiths, but by heart–is yet another privilege of ministry here at All Souls. Each chooses a ministerial mentor, with whom they work most closely to hammer out their credo, but before that, one by one, the ministers meet with them as a group. The drill they’ve set for us is fascinating and a bit intimidating. Before the minister arrives, they write out questions, which they draw from a basket. "Would you like to have a tall pointed hat on your head?" one questioner asked. In response to this Rorshack I could only think of dunce and witch. "No," I replied. It turns out that the question was actually probing my degree of Bishop or Cardinal envy. You have to admit, those hats are quite impressive.
The answer I gave that most surprised them was to the question, "What do you like best about the ministry?"
"Being with people and their loved ones at times of death," I replied. One reason for this is purely selfish. Every time death pays a visit, my shuttered windows open. The bracing wind of mortality blows all those little scraps of regret and dissatisfaction we so endlessly tend to pick over–the detritus of our unholy self-absorption–off my mental platter. At once I am connected to life’s mystery and power. Love calls me to attention. I am cleansed.
Let me tell you about Michael. "I’m just a regular guy," he told me on Friday, when I said, while saying goodbye, that I was going to share a little of his story with you this morning. "That works just fine for us," I told him. "We call our church All Souls, not All Saints." Which is a good thing. Otherwise it would either be empty or filled with hypocrites.
You may have noticed Michael Beier last Sunday. During the 11:15 service, he was in his wheelchair next to his wife, Theresa, who, together with Carly and Dustin, their precious four- and two-year-old children, sat in the first row of chairs. Michael had to leave the service early. He was having a hard time breathing. What he didn’t know then is that a respiratory infection had settled in his chest, signaling the beginning of his final chapter in a two and a half-year struggle with ALS.
The Beier family is new to All Souls. Though I have met with them several times since then, I first got to know Michael and Theresa just a few weeks ago. They were seeking a religious home, a place where they could be confident that Michael’s funeral would celebrate his life in a matter truthful to his spirit. Not because of who I am but because of who Michael and Theresa are, we became close very quickly. Michael is so open and honest that one meets him in an authentic place almost at once.
Until less than a year ago, Michael was a world-beating senior director of equity trading for Credit Suisse First Boston. He loved his job, one filled with action and challenge. And he reveled in his family: beautiful Theresa, their little daughter Carly, with Dustin soon to be on the way. On the treadmill at lunchtime one day, Michael’s calf cramped up. After six months of tests–an orthopedist, podiatrist, chiropractor and three neurologists later–Michael received final confirmation that he had been struck by ALS.
This personal tragedy he soon began to dedicate to the greater good. Michael became a vice president of the Muscular Dytrophy Association. Before long he was on the Board of the famed Packer Center for ALS Research at Johns Hopkins. In 2001, he helped plan, "Wings of Hope," the MDA-sponsored reception at the Tavern on the Green that raised $320,000 for the Center’s research. Last year he chaired "Wings over Wall Street," dubbed by one writer, "The Night of 1,000 Traders," bringing 1.9 million dollars to the cause. "At first," Michael said, "I didn’t set out to be a Christopher Reeve type and get so involved in organizations. But then I decided I should do something now, while I can still speak."
ALS is a devastating condition. Many of you remember Christine Mayer, who struggled so valiantly with ALS until her death three years ago. An individual in the prime of life loses the ability to write, to type, and finally to speak. The negative print image of Altzheimers, which takes away an often otherwise able-bodied person’s mind, ALS traps a perfectly working mind in a disintegrating body, in Michael’s case at the age of thirty-six.
Last Monday, Michael and Theresa gave me a book, beautifully bound and poignantly illustrated with family pictures, entitled, "I Love You Forever by Daddy." Seizing this last chance to spell his love out clearly, Michael dictated the text earlier this month. Bar none, it is one of the most beautiful books I have ever read. It begins:
Dear Carly and Dustin,
This letter is so hard to write; it is one of the hardest things that I have ever done. Each time I try to dictate it, I become so choked up that I can’t get the words out. It is so hard to think of everything I want to say. Since I’ve had ALS, I’ve done more thinking that I have in thirty-nine years. I’ve thought so much about doing this letter, but I have never been ready to say goodbye to my beautiful kids. There is so much that I want to say, and that I want you to know. So, I’ll do my best to tell you some of the things I have been thinking about.
Since Carly’s most vivid and Dustin’s only memory of their father will be of him with ALS, he tells them stories about how he and their mother met, their courtship and wedding, their favorite vacations, the children’s birth. "Your mother is and has always been the number one priority to me," Michael tells Carly and Dustin. "I hope that you understand how wonderful our relationship has been. It wasn’t because I had ALS or was sick. The ALS never affected our love. In fact, it was a test and we came out winning. Before and after I got sick, our love has been strong. The only thing that has kept us together is love."
Michael goes on to compose a modern version of what, in the Middle Ages, was called an Ethical Will. In addition to a Last Will and Testament distributing one’s property, Jews in particular occasionally passed on to their children a written bequest of their values. In sorting through my own family’s papers, I came across a like will written by my Great-great grandfather, a Mormon Bishop. Today, the AIDS epidemic in Africa is orphaning so many children that ethical wills are increasingly common. Often bound as Michael’s book, these precious books are filled with stories from the children’s early childhood, which they otherwise might not remember, together with tips for living a good life, sealed by expressions of undying love.
Unlike my great-grandfather’s ethical will and those of many Medieval rabbis, no curse is attached to Michael’s gift. No do this or else. In short, no burden of guilt is attached. Which is a good thing, because as many parent/child relationships so sadly illustrate, love coupled with guilt form an intrinsically unstable bond.
In I Love You Forever, Michael shares his favorite food and color and holiday ("Christmas because I love giving presents"). He tells them about the kind of movies and music he loves. And then, he offers a few carefully selected and touchingly illustrated life lessons.
• Take care of each other;
• Walk away from trouble
• Use your time in school wisely
• Make sure you think before you speak
• Always ask for help.
• Always Eat the best Part First.
He goes on to teach his children things he has learned about reading and money and friendship. About ALS and sickness and hard decisions. And about his growing faith in God. He also speaks to Carly and Dustin openly about death, assuring them that he is not afraid. He said the same to me on Monday evening when we met. Michael was not afraid of death, because he had made his peace with life.
Michael’s lack of fear about passing through death’s door has had me thinking all week about something I surely knew but somehow had never crystallized in my mind before. A proportional relationship exists between the fear of death and the fear of life. They conspire with one another. Fear of death lowers our trust in life, by elevating our awareness of the risk associated with it. Lowered trust and an elevated awareness of risk are two primary constituents of fear’s debilitating power. Having mastered fear, nearing his hour of death, Michael was able to open his heart fully. Many of us struggle to do the same, even years from our appointed time. Until we can embrace death as (together with birth) one of two essential hinges on which life turns, we will remain, at least to a degree, in hiding. Our windows shuttered in false protection, we will be unable fully to embrace life and experience love.
Under the best of circumstances, it is difficult to be as conscientious a parent as Michael was during the four years allotted to him as a father. But everything we really need to know is right there in the title of his book. By calling his final gift to his children, I Love You Forever, Michael imparted the greatest of all truths, and therefore the greatest of all gifts, to his children: the wisdom that love, and only love, never dies. "I will always feel your love for me," he closes. "Always feel my love for you. With all my heart, Daddy."
The first public attention to ALS came sixty-four years ago, right here in New York City at Yankee Stadium. Announcing to his fans at Yankee Stadium that he had contracted ALS–a disease that was destined to be named for him–Yankee legend Lou Gehrig confessed, "I have been given a bad break, but I have an awful lot to live for. With all this, I consider myself the luckiest man on the face of the earth." I thought of that ringing life affirmation Friday Morning when I joined Michael and some twenty family members and friends around his living room table. He was completely in control of the situation. Giving us our marching orders for his funeral. Making sure that we were all taking care of one another. And asking for the Last Rights, which I, as a Unitarian, performed imperfectly. That’s the way he wanted it, Michael said. His speaking was difficult to make out, but he clearly said, loud enough for all of us to hear, "No Bullshit."
One thing that frustrated Michael was the slowness of finding a cure for Lou Gehrig’s Disease. Shortly before his own death, Gehrig reported with elation a new antidote that seemed to be working to arrest the rate of muscular degeneration. "I’ve got good news for you," he reported to his old friend Bob Considine. "Looks like the boys in the labs might have come up with a real breakthrough. They’ve got some new serum that they’ve tried on ten of us who have the same problem. And, you know something? It seems to be working on nine out of the ten. How about that?" Talking with him further, Considine discovered that Gehrig was the one for whom the serum had no effect. "It didn’t work on me," Gehrig admitted. "But how about that for an average?–nine out of ten! Isn’t that great."
Michael and the namesake shared a deep desire to spare others from what they themselves had to go through. Lou Gehrig’s optimism didn’t lead to the finding of a cure, but by the work Michael and many others have done to advance ALS Research at the the Packard Center, we know that progress, however halting at times, will continue to be made against the dread disease.
Let me close with a thought or two on life’s meaning. Whenever a trap door swings or the roof caves in, the question to ask is not "Why?" Why will get you nowhere. The only question worth asking is "Where do we go from here?" And part of the answer must be, "together." Together we kneel. Together we walk, holding each another’s hands, holding each another up. As for a life that ends too soon, in the eye of eternity the only lives that end too soon are those that won’t live on in other’s hearts. Eternity is not a length of time; it is depth in time. We enter and meet there through the sacrament of love. In thinking of lives and deaths like Michael’s, we should not thank our lucky stars knowing that our own lives could be so much worse. Rather, we should examine our lives carefully, knowing that they could be so much better. Then, one day, we too may have the privilege of presiding at life’s precious table and bidding our loved one’s farewell, knowing that together we are surely blessed. That should be our prayer.
Michael Beier died at 7 P. M. Friday evening, surrounded by loved ones. His funeral will take place here in this sanctuary at 10:30 Tuesday morning. May he rest in peace.
Amen. I love you. May God bless us all.