Jamie Stober describes himself as a newly confessional Lutheran theologian of the armchair variety who is looking forward for the opportunities coming up ahead on the pilgrimage that is the Christian life. He loves Jesus Christ and wants to serve him with his whole being. But his life is profoundly challenged by a rare disease called Duchenne muscular dystrophy, a form of muscular dystrophy that worsens more quickly than other forms of this crippling illness. Duchenne muscular dystrophy is caused by a defective gene for dystrophin (a protein in the muscles).
Through a mutual friendship Jamie and I met online and then we met a few months ago by telephone. Jamie is a young man who knows that his days are limited but he is filled with a deep determination to make every second count. I asked him to contribute a guest blog to my site. He is, himself, a regular blogger, thus I encourage you to visit his site and to pray for him as a brother in Christ. He is truly a “great soul.”
God wants to show us his love for us in the circumstances he providentially arranges for our lives to be lived in. When all is right and rosy in our lives, it is quite easy and natural to arrive at this conclusion. God has blessed me; he must love me. Yet, as all of us who live in this world know, life is not always lived in the Big Rock Candy Mountains. We have troubles and they are never in short supply. If pleasure and ease are the barometers of goodness, it is far from evident in our natural sight that a good and benevolent God rules the universe when there is so much pain and suffering in it for the creatures he has made. By faith, however, we are shown the sufferings of One Man as the very content of God’s love for us. This is Jesus Christ, who through his suffering and resurrection offers to unite us to the life of God. In and with our Lord Jesus Christ, then, God demonstrates his mighty love for us in our weakness, pain, and suffering. I want to share briefly with you how in the trial of living with a disability, God has endeavored to show me that he loves me, and I hope, through me, to show how he loves all people.
Before I enter into this discussion, however, it will be prudent to describe what the understanding that God shows us his love in our sufferings is not. It is not to render sufferings not sufferings at all. It sounds very pious to speak saccharine platitudes that minimize the troubles we experience, but this is really an affront to God’s goodness and it denies the nature of reality. Suffering, death, disease, and decay are evils in and of themselves. Jesus wept at the tomb of his friend Lazarus and he despised the shame and humiliation of the cross. If this is the case, why then does God send these things to us? The miracle was that though Lazarus was dead and Jesus was abandoned by his friends and forsaken by the Father, God was there, bringing life from death and reconciliation from alienation! This is God’s way. He marches right into the teeth of the darkness and makes it work backwards, bringing good from evil. If we understand this, we understand the miraculous transaction by which he turns the tears of our lives into joy by carrying us through them together with himself. This is why Christians are not insensible to the pain like Stoics or grieve like pagans who have no hope when we encounter the troubles of life in a fallen world. Jesus is alive and in his glory. Even in the midst of the deepest valleys, then, we have joy and hope because the one who has already marched through the darkness is with us, leading us through it into the light.
Duchenne Muscular Dystrophy is the disease that has profoundly affected my life. It’s a progressive neuromuscular disease that affects the skeletal muscles and cardiovascular systems. I could walk until I was 12, but I’ve been in a wheelchair ever since. The disease is quite debilitating and usually results in death by the middle 20s. I can no longer manage most major life functions on my own, but I’m now 28 and, by all accounts, still doing remarkably well. Humor, stubbornness, perseverance, and hope characterize my mental mood and outlook at most times, but some days I respond to the crosses of my physical condition and prognosis and the attendant trials of absolute dependence on others, social isolation, and the difficulties or outright impossibilities of pursuing certain career and life opportunities with selfishness, frustration, fear, and melancholy. That being said, I am grateful and thankful for my life and feel very blessed by God to live the life I live.
How has God uniquely shown his love to me in my weaknesses and trials? I feel that perhaps by constitution I have a tendency toward being a solitary individual. In some ways, of course, my lone wolf ways are exacerbated or could even be caused by my disability, but physical limitation is one of the surest ways we discover how much we need others. When conscientious family members, friends, and strangers respond with care to the needs of a dependent individual, that person experiences in a profoundly unique way the grace of being loved, for in direct proportion to the level of his dependence on others, he knows the privilege of receiving love that is given regardless of his ability to benefit those who love him. This is the kind of love with which God loves us, especially since we are sinners unable to truly love God without his own help. In this light, God is always preaching the Gospel to me when people love me by assisting with basic needs I cannot meet myself. My mother, the friends in college who were always so willing to come to my rescue in times of need, or take me to a party, or care for me on a Christian retreat, my youth pastor who always made sure I had a ride to church, and so many others have been the best messengers of God to me.
Secondly, God has made his love known to me in my muscular dystrophy by richly supplying strength in the midst of every weakness and struggle. Like the Apostle Paul, I have come to know that God’s strength is made perfect in weakness and that his grace really is sufficient. My time living on my own as a student at the University of Missouri really put this to the test. In the midst of uncertainties regarding healthcare workers and coverage and scrambling to find help often at the last minute, nearly perpetual cold feet from bad circulation, bodily discomfort from problems with medical equipment, and, of course, the daily grind of being a full-time college student in the midst of these unique challenges, I not only survived three years of this but I thrived and had the best time of my life. God met all of my needs and gave strength I did not possess to endure difficulties that sometimes pushed me right to the brink of giving up and going back home. I can only attribute my success in that endeavor to One who is mighty to save and empower those who trust in him. Since I graduated, the victories of grace have not seemed so dramatic, what with mounting frustrations about the continued progression of my disease, unemployment, being single, and living at home in my late 20s, but the strength of God continues to buoy me, bringing joy and hope for tomorrow that defies my natural understanding.
Thirdly, in a unique way, those who suffer and bear weakness in their bodies testify powerfully to the hope of the resurrection. As is the case with the dependence I spoke of that leads us by necessity to the cure for isolation that is love, so it is that those who are most visibly touched by physical brokenness both are invited themselves and invite others to enter into the healing of broken creation and triumph over death that is Christ’s resurrection. Ours is a crooked witness that preaches fullness and restoration by way of emptiness and brokenness. I think this is perhaps why “normal” people often respond with discomfort to people with disabilities. People don’t want to be reminded that even those who are supposedly “whole” are ultimately just as weak and frail and subject to death as those of us who can’t hide it in any way. But, as has been my theme in this reflection, there is grace even in the problem because it is part of the solution. Christ received wounds to bring us healing and died to bring life to the world through his resurrection. Living as a Christian with physical brokenness, then, I am given the privilege of participating in Christ’s work of redemption by bearing witness to it in my body. This has a benefit for myself in moving me to cling to Christ, and I hope that it has the same effect on others.
Lastly, and perhaps just as counterintuitively as my other points, God has demonstrated his love for me in the midst of muscular dystrophy –something that would seem in conventional understanding to move me to place my hopes entirely in the spiritual and otherworldly realities of life after death—by showing me the goodness of bodily and worldly existence. Though perhaps my time in the body and in the world on this side of the resurrection will be short, it will be spent as an embodied creature, and, in spite of the difficulties of this existence, it has been given to me as a gift in which to taste and see that the Lord is good. What is more, the life of the world to come will be life in the bodies we currently have and in the same physical world we currently inhabit, though as they will be when made incorruptible and cleansed from all the effects of sin and death. This means that even now, as I enjoy the gifts of the Lord in a broken body and a broken world, I am receiving a foretaste of the glories of the new heavens and the new earth. In spite of the sufferings, in spite of the travails of the world, if we are in Christ, we always have more of the joy of the Lord in the land of the living ahead of us than behind us. We have all come through shadows and we all will go through the darkness on the way there, but may we all be given the grace to see in the depths of the shadow the supreme value and glory of the light that is already shining and will only grow brighter!
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I have a twin sister with Parkinsons, this post has given me insight to her feelings and pain. She never complains and is always praying for others. Thank you dear brother for sharing your feeling so openingly. God bless you always. Love in Christ…Your sister Pat
Deeply moved and encouraged by this beautiful post. What a strong word to all of us. Thanks for sharing it, Jamie, and posting it, John. Wonderful.