Living with Multiple Sclerosis: The Advantages and Disadvantages

Living with Multiple Sclerosis: The Advantages and Disadvantages
By Thomas H. Graves

   In addressing the topic of learning from adversity let me begin with two basic understandings. First, what I have to say reflects not only on my personal experience of living with multiple sclerosis, for we all share disadvantages of failure, grief, sorrow, sickness, and frustration; it has visited us all. Living with limitations is a universal human experience. Second, though I will speak of spiritual lessons learned, I would not want in any way to identify God as the source of the evil that comes upon us. God does not send pain our way so that we may gain something from our difficulties. When we find ourselves in the midst of sorrow and difficulty; there are some things we can learn. But that is a far different thing than saying God brings evil upon us in order to teach us a lesson.  

   What I want to address is my experience that there are some advantages for us when we face difficulty and disadvantage. Particularly in the book of Psalms, we hear of the difficulties of life and the importance of facing hardship with honesty. Sensitivity to sorrow belongs at the very heart of biblical religion. It is interesting how often in our worship we focus on Psalms of celebration and order, the kind of Psalms proclaiming “God is in heaven and all is right with the world.” But, the truth is most of the Psalms are not songs of celebration; they are not saying that everything is exactly as God intended it to be. Rather, the largest number of Psalms are songs of lament, psalms of sorrow, psalms of difficulty. It is just that kind of honesty that needs to become more a part of our faith, not less. It is more religious to face our doubts, difficulties, sickness, and failures head-on, taking our anxieties straight to God, rather than trying to picture our faith as saying:  if you are truly faithful, nothing bad ever happens to you. What a strange theology for people who worship a man who died on a cross! Sorrow is at the very heart of our faith.  In facing difficulty directly and honestly we will find some important lessons, perhaps of more value than what we might discover if we insist that religious people should always be happy and wear a smile on their face. So let us consider the advantages of disadvantages. Let us begin to see if there are some lessons we can learn.

   First, it seems to me, one very clear lesson that weakness teaches us is that we are all part of a very fragile human family. Weakness teaches us that life is fragile through and through. Life is defined by our limits; life is defined by finitude. When we confront the created order we find ourselves living in a world with metaphysical limitations. There is no way that we can have water that will quench our thirst and yet will not at the same time have the capacity to drown us. There is no way that we can have fire that will warm us that will not have the ability to scorch our flesh. There is no way we can have minds attuned to enjoying the intricacies of human relationships and not also have minds that are incapable of insanity and misunderstanding. It is the nature of life. The question is not so much saying when we meet difficulties, “Oh, why me?” but understanding, “Why not me?” I am a part of this entire, finite, fragile structure; that is the nature of life. Often we have an idea that as persons of faith a protective shield has been built around our lives and nothing evil is going to happen to us. You know that is not true! Very good people suffer; sometimes they suffer because they are very good people. There is not a Biblical promise that difficulty will never come to the faithful. There is simply the assurance that even in trouble you will not be left alone.  You will not be abandoned. When we meet those moments at the edges of life, we come to understand what it means to be a fragile human being.

   What we mean when we say “life is fragile” is related to the meaning of love. We usually love those things most dearly that are the most fragile. Life will inevitably bring sadness, but as it does so it also has the ability to bring meaning as well. I remember about twenty-five years ago doctors performing several tests attempting to discover the source of some neurological problems I was facing. They were looking for brain tumors, pretty serious possibilities. Suddenly, when as a young adult you are facing the problem of life-threatening disease, you begin to realize how fragile life really is.  What interests me most in looking back at those events, is remembering what I was focusing on. I was very centered in my thinking, as I am sure others would be, on those things that were personally most important, that were most fragile. As I was going through the series of medical tests trying to determine if I had a brain tumor (which turned out not to be the case at all), my main fear had to do with my two daughters who were quite young at the time. What concerned me most in that situation was being able to live long enough to teach my children to ride a bicycle. Life is fragile, and its fragility reminds us that we love those things that we are most fearful of losing. We need to understand the precious nature of life that can lead us to care more deeply. In teaching us that life is fragile, weakness leads us to focus on those things that are most precious.

   Another lesson of facing disadvantage is that weakness saves us from self-reliance.  I have fond memories as a child of making a road trip every summer as our family would drive through the mountains of North Carolina. On that trip we would always see a number of signs along the sides of the road, “Prepare to meet thy God!” and “Get right with God.” Often the crude signs would be painted on the faces of cliffs hundreds of feet about a ravine, and you would wonder — who would risk life and limb in order to paint high on a rock, “Jesus Saves?” We would laugh at those crazy signs, at how silly and unsophisticated they were. In his work, The Hungering Dark, Frederick Buechner talks about the embarrassing message of those same strange roadside signs proclaiming "Jesus saves" and comments that what bothered us most about those signs was that they delivered an inescapable message to self sufficient Americans: “You will never make it. You have not and you will not, at least not without help. And what could be more presumptuous, more absurd, more pathetic, than for some poor fool with a cut rate brush and a bucket of white paint to claim that the one to give you that help is Jesus.”[1] We are, in fact, in need of help; perhaps there is something else that we need to depend on. 

   It is interesting to look at the discussion in the New Testament of the “unforgivable sin.” It seems to me that the unpardonable sin refers to our refusal to admit our need. The one thing God cannot do is to work with a person who refuses to admit that they need God, that they need to depend on another. In Gary Wills’ book of a few years ago, Certain Trumpets, the author looked at outstanding examples of leadership in various areas of human endeavor. When he looked to religion, his example of good religious leadership was Pope John XXIII, the one who energized a modern day reformation, bringing the winds of change to the Roman Catholic Church. Wills reported the secret of religious leadership for the good Pope was found not in independent strength but in leaning on another. "Pope John often meditated on the risen Jesus’ words to Peter in the Gospel of St. John (21. 18): ‘… when you were young you fasten your belt about you and walked where you chose; but when you are old you will stretch out your arms, and a stranger will bind you fast, and carry you where you have no wish to go.’” John XXIII identified that act of being led and supported by another as the secret of mature religious leadership. We need to learn to lean on another.[2] Disadvantages can lead us to see the failure of self-reliance, recognizing that there are some things we cannot and some things we should not face on our own. It is the most difficult thing, it seems to me, for Americans to grasp with our inbred rugged individualism. What we can learn from facing disability is to recognize the need to lean on others. Weakness teaches us that all of life is fragile and weakness teaches us that we need to learn to lean; it saves us from self-reliance.

   Weakness also helps to place life in proper perspective. Looking at death, for example, really simplifies life. In facing death you come to realize what is really important. I recall as a seminary student my very first experience in ministering to a person who was on their deathbed. It was with anxiety that I visited the bedside of old Mr. Emmett, a saintly fellow, who had become a dear friend. I was worried and distraught, but he was very calm. Mr. Emmett began to minister to me by saying. “Tom, you really don’t understand, do you?” I’ll never forget his words, “You need to know whatever happens to me, I’m going to be alright.” He had come to grips with death. The truth is, my anxiety that day was in facing my own death not that of Mr. Emmett.

   One of the best examples of how facing our weakness can put our life in proper perspective came from Paul Tillich, the great Protestant theologian, in his marvelous sermon entitled “Shaking of the Foundations.”  He talked about the events of World War II, how they shook the world to its foundations, and also how they shook the soldiers to their foundations, making the soldiers to appear much like the prophets we first met in the Hebrew Bible. Here’s how he put it:

 

All the foundations of personal, natural, and cultural life have been shaken. As long as there’s been human history that’s what has happened, but in our period it’s happened on a larger scale than ever before. Not one foundation of the life of our civilization remains unshaken. There are soldiers who have become prophets, and their message is not very different from the message of that ancient Hebrew prophet. It’s the message of the shaking of the foundations; and not those of their enemies, but rather, those foundations of their own country. How could the prophets speak as they did? How could they paint those terrible pictures of doom and destruction without cynicism and despair? It was because, beyond the sphere of destruction, they saw the sphere of salvation. Because in the doom of the temporal, they saw the manifestation of the Eternal. Because they were certain they belonged within the two spheres, the changeable and the unchangeable. So may we not turn our eyes away, may we not close our ears and mouths, but may we rather see, through the crumbling of a world, the rock of Eternity and the salvation which has no end. [3]

 

Disadvantage will shake the very foundations of life, and having been shaken, when the veil is torn away, we understand those things of eternal value as never before. Life is fragile; weakness can save us from self-reliance; and weakness can place life in proper perspective. 

   Another lesson of disadvantage:  suffering and death can teach us to take life and death seriously. Martin Heidegger argued correctly that the very key to understanding life is coming to grips with the inescapable fact of our death.[4] Death, he wrote, when faced authentically, can become the very best route to understanding what life is about. As we look at our American culture, I think we would be the very best example of what Heidegger talked about in terms of inauthentic ways of facing death. The last thing we want to do, what makes us most uncomfortable, is to look at the limits of life and at the possibility of death. Much of our culture is based on the idea of camouflaging the most universal event of humankind – we are all going to die. It is interesting how much of our life is an attempt to evade facing the issue of dying. There are a lot of inauthentic ways to face death:  refusing to admit it is going to happen; refusing to prepare for it; refusing to deal with it. For Heidegger it would also be inauthentic to rush suicidally to death.  It was not his idea to brood upon death and to think of dying things only. The authentic way of facing death is to understand it is always a possibility and to be prepared to die. What does that mean to face death authentically and to be prepared to die?  I have a very dear friend, an insurance agent, who years ago handed me a long list of things to do in preparation for dying – like drawing up a will, preparing advance medical directives so when we go into a hospital folks will know what our own wishes are, providing directions for funeral services and burial, and preparing a list of the location of valuable things and documents. There are several things that we ought to do for ourselves and particularly for others as we face death. Some of the best times I spent with dying parishioners involved the planning of their funeral services, focusing on how they wanted to be remembered. Preparing authentically for death means to prepare for that eventuality. 

   In facing the last challenge of our lives, how do we deal with death? Heidegger suggested that death is both the unique and the uttermost possibility of life. It is the uttermost possibility of life because behind everything we face in life lurks death. By that he meant there is nothing you are going to touch that will not participate in dying.  People, institutions, everything is in the process of dying. That was what he meant by saying death is the uttermost possibility of life. Then he said that death is the unique possibility of life. By that he meant that as you look at all the possibilities of life, death is the only possibility that when it is realized, everything else disappears. It is the unique possibility, the most important possibility we need to consider.  

   Facing death authentically can teach us to take life seriously. Ray Mullaney was a dear friend when we were living in Charlotte, NC. Though a layman, he was this pastor’s pastor. He pulled me aside one evening in the church parking lot and talked about how his cancer had returned and how he was going to die very soon. Then he began to quote poetry, like his mother would, about facing death with faith. I will never forget the final conversation I had with Ray. Very late one night, his wife called me to come over to the house. Ray was at home being cared for by hospice, one of his sons was at the foot of the bed, his wife Martha was on the other side of the bed from me. As part of our regular lunchtime discussions Ray had asked months before about a passage in the Old Testament, wondering what God looks like. So now, in this last conversation, he very haltingly asked the question once again, “What does God look like now, for me?” I responded as best I could as his pastor and friend, “Right now, God looks like a man dying on a cross and that cross is in the very heart of God.” In a little while I went on to say, “And in the face of death, God also looks like the risen Lord.” But then, as usual, Ray had the best word and in this case some of his last words, as he turned to me and said very slowly, “Tom, God told us what God looks like. God looks like love.” What a marvelous thing to have on your lips as you face death: a recognition that death is coming, but you face it knowing the love of God, who holds all of life – and death – in divine hands.

   Weakness teaches us that life is fragile. It can save us from self-reliance. It places life in proper perspective. It teaches us to take death and life seriously. It also saves us from isolation. One thing you know you have in common with everyone else in life is our suffering, our hurt, and our pain. Henri Nouwen came to be known to many in Christian circles through his book The Wounded Healer, and what a marvelous image that is. We are not only called to be healers, but we come as Christians to be healers only as we come to grips with our own woundedness. We best minister to one another out of our hurt, not out of seeing ourselves as above pain. Nouwen got that image of the wounded healer from a Talmudic legend of a rabbi who came upon the prophet Elijah and asked when the Messiah would come. The prophet replied, “Go and ask him yourself.” The rabbi responded by asking, “Where is he?” The prophet answered by saying, “Sitting at the gates of the city.” “How shall I know him?" questioned the rabbi. Elijah answered, "He is sitting among the poor covered with wounds. The others unbind all of their wounds at the same time and then bind them up again. But he unbinds one at a time and then binds it up again, saying to himself, ‘perhaps I shall be needed: if so I must always be ready so as not to delay for a moment.’”[5] What a crucial image of the Messiah: a wounded healer, sitting among the sick and wounded, ready to help. Coming to grips with our own wounds saves us from isolation and helps us to understand that the task of faith is not to save us from being wounded, but to minister even in the midst of our woundedness.

   A final thing that has certainly been important for me in facing finitude, sorrow, and illness, is to see how our disadvantages can focus our use of time. Walter Kaufmann, the chief translator into English of the works of Soren Kierkegaard, edited a marvelous book, Existentialism, Religion and Death where he brought together several essays on facing death. Kaufmann is certainly no Christian theologian, but in reading through his book I was amazed by the importance of what he had to say. Kaufmann wrote one essay in light of his own experience of facing a terminal illness. In that essay he had a passage that when I first read it I said, “No, no, I’m not reading that right.” I went back and read it again. He said: “The life I want is a life I could not endure in eternity. … There is no other life I should prefer. Neither should I like not to die.”[6] Think about that: I would not want to live a life in which I would not die. Kaufmann talked about how facing death can focus our use of time. It is amazing how much time we waste. How we continue to put things off – “Oh, I’ll deal with that someday;” or “I’ll get around to that sometime;” or “I’ll patch up that relationship later;” or “I’ll take care of that later.” One advantage of looking at death is realizing we have a limited amount of time. It makes a difference how we live if we understand we are called to use our time wisely. Kaufmann, I think, taught us well when he said, “I would not want to live a life in which I would not die.” We are called to live life as if it were not forever; to use it wisely, here on earth.

   Weakness teaches us that life is fragile. It saves us from self-reliance. It places life in proper perspective. It teaches us to take death and life seriously. It saves us from isolation. And it focuses our time. All of this leaves us confronted with some choices. One is a choice of faith or unbelief. It seems to me, the most profound argument for unbelief comes from the issues of evil and suffering. How could there be a good God when there is so much pain in life? Frank Tupper, a professor at Wake Forest University Divinity School, reflects on that issue, and wrote a book of theology in light of his wife’s illness and death. He talked about how the importance of Jesus Christ is not that he removes us from suffering, but that with Jesus Christ, we learn how to endure and deal with suffering. With Christ, I can believe. Listen how Tupper puts this in his book, A Scandalous Providence:

 

Of course I cannot speak for anyone else, only for me, but this I know:  without the story of Jesus, I would not believe in God. Or more probably, God simply would not matter. The story of Jesus enables me to envision God as one who genuinely cares for each and for all of us. In Jesus, God confronts the darkness face to face, incarnate for our sake. Jesus is the light of the gentle face of God, and the story of Jesus says that God laughs with us in our joys, and weeps with us in our sorrows. God strengthens us in our helplessness, God stands with us in the uncertainty of our believing, and God waits for us in our yearning to belong. Ultimately, it is the lonely companionship of Jesus, the suffering of his Passion, that makes my painful journey a sometime story of faith. [7]

 

Faith or unbelief; it may well be that the issue of suffering can be the very thing that brings us to the deepest understanding of Christ and an experience of faith.

   A second choice: anger or creative response. A few years ago I was in the Czech Republic. I had always heard about the city of Lidice. Not a huge town, but a significant village where sabotage and guerrilla fighting had occurred during World War II. The Nazis came in – they wanted to teach the citizens of Lidice a lesson – so they killed every man, and almost all of the older male children. They demolished the town, completely leveled it – there was not a wall left standing. Lidice was almost erased from the face of the globe. You can go back to Lidice today, and there the crumbled remains of the town have been preserved, kept as a memory of past atrocity.

  My favorite place on the globe is the city of Coventry England and the new cathedral that has gone up there in that city. It is one of the most beautiful buildings in all of Christendom. Coventry was bombed and senselessly destroyed during World War II. The old cathedral was burned and ruined. But if you go back there to the site of the old cathedral, there is now an open air chapel. They have taken two of the charred roof beams and formed a large cross, hung it at the front of this now outdoor chapel, and have emblazoned new words on the altar. There, below those charred embers, are written the words, “Father, forgive.” Across the street, is one of the best expressions of Christian art and architecture you have ever seen. Not stained glass windows, but etched glass windows, and a very vibrant and active church. Two cities – Lidice and Coventry – both the victims of senseless warfare. But one is an example of faith, the other an example of destruction. We have some choices to make as we face difficulty. Faith or unbelief.  Anger or creative response. I would hope for each one of us, as we face our disadvantages, that we might learn of some advantages as well.