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.