I Have Decided to Live, or Die Trying

 (The following article first appeared in the Asheville (NC) Citizen-Times newspaper.)

When I was a hospice chaplain, one of the people I served said to me, "I don't know whether I should prepare to live or prepare to die." For the past five years that I have had ALS (Lou Gehrig's disease), I have been preparing to die. I have had a change in plans. I have decided to prepare to live. There are several reasons for this change.

First, there are exciting developments in ALS research and treatment. For the first time in many years, there will be new drugs available to fight ALS. Four drugs that have shown promise in delaying the progression of the disease are in clinical trials. Stem cell research is proceeding well at Emory University in Atlanta and gives hope for reversing the effects of ALS. I do not know when these treatments will be available, but when they are, ALS patients will have hope for longer lives and a cure.

Second, the FDA has approved a Diaphragm Pacing System which is similar to a heart pacemaker. The System stimulates the diaphragm electrically to help the person breathe. It can delay the necessity for a tracheotomy for many months. I have been tested to see if I am a candidate for the System and I await the results.

Third, I have a Swedish mother and an Alabama sweetheart who are absolutely convinced that I will overcome ALS. When I get discouraged they encourage me with their hope, enthusiasm, and unconditional love. I have thought that unconditional love is the greatest force on earth. Now I know it.

Fourth, I have become a better advocate for my health care. This advocacy is both a cause and a result of my decision to live. I have pushed for small changes like getting a comfortable toilet chair to big ones like getting tested for the Diaphragm Pacing System. I am learning to take a more active role in my treatment and the results are good.

Fifth, I have decided to expand my faith in a healing God. I have decided to take God at His word and take seriously all the verses in scripture about the power of prayer. I have started to pray for my cure from ALS with more hope. I meet regularly with members of my church who pray for my healing.

When I told a friend I had been diagnosed with ALS, he said, "I don't know anyone who is more prepared to handle this than you are." God's gift of faith and my experience as a minister and chaplain have helped me accept the eventuality of my death to ALS. There is, however, a difference between accepting my death and being resigned to it. ALS may still kill me, but not because I have given up hope. Instead, I will be full of hope and faith and the love of friends, family, and God. If I go down, I will go down fighting.

Worship Defines My Reality, Not ALS

 (The following article first appeared in The Epistle, the newsletter of St. James Episcopal Church.)

For the last five years, ALS, also known as Lou Gehrig's disease, has been a constant presence in my life. It is a fatal illness characterized by decreasing muscle strength. I have watched myself lose the ability to walk, talk, eat, and lift my arms out of my lap. I had to resign from work and move out of my home into a nursing facility. My life is punctuated by quarterly trips to an ALS Clinic in Charlotte where the progress of the disease is assessed and treated. I sleep every night with a machine that helps me breathe. I spend much of every day connected to another machine that pumps nutrients into my stomach through a feeding tube. ALS is ever present, deciding for me what I can and cannot do. Some people might say that ALS determines the reality of my life.

They would be wrong. Worship at St. James Episcopal Church determines the reality of my life.

When the bell rings at the start of worship, a profoundly different reality begins. We enter into an experience that transcends time and place as we commune with our spiritual ancestors and descendants. A foretaste of heaven is spread before us. We sing praises to our Creator and God. We hear the words of God spoken to us and we speak our words to God in prayer. We eat spiritual food in the sacrament of Jesus' body and blood. We join the crucifixion and resurrection of our Lord. We await His return with eager expectation, for we are already partakers of eternal life. We are sent forth to serve our Lord with gladness and singleness of heart. We are strengthened to live as citizens of heaven on earth.

It might be more accurate to write that God determines my reality. While true, it is in worship that I experience the majesty of God in the liturgy, vaulted ceiling, and stained glass windows. It is in worship that I experience the intimacy of God in words heard and sacrament consumed. I associate with people I might not know otherwise who turn out to be my sisters and brothers in the faith. I learn that God loves me just as I am and helps me to become better than I am. In worship I am confronted by the tremendous mystery of a loving God. All of these things shape the reality of my life.

I have bet my life on the reality of God I find most fully expressed in worship. Every Sunday I vote with my presence in worship that the reality of God will be my reality. Not ALS or even the joy I find in friends and family will become more important to me than God.

I sit in the back at St. James in my power wheelchair and watch my brothers and sisters arrive for worship and take the sacrament. We have our stories of diseases to fight, children and grandchildren to love, marriages to make and sustain, lost loved ones to grieve, work struggles to overcome, loneliness to endure, and all the other circumstances of life that try to consume our attention. Distract us they will, but consume us they will not, for we have decided that our worship of God will define and create the reality of our lives.