It's taken me a little while to write about such a leap I witnessed back in February. It was with a former patient of mine. Due to HIPAA laws, I cannot name him - I'll call him "MB." MB had amyotrophic lateral sclerosis or ALS - commonly known as Lou Gehrig's Disease after the famous baseball player who contracted it. It is a "a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed." (from the ALS Association)
MB was 34 years old when I became his chaplain. He had been in hospice care for about eight months. MB was not an "easy" patient - he could be very demanding and impatient with others who cared for him. He could also charm the snakes out of the trees when he wanted to. He was cared for by a girlfriend for most of his illness. He had a daughter who was just 2 years old - she was the light of his life and the one thing for which he wanted to live.
My work in hospice sometimes requires me to initiate conversations about things people would rather not talk about - funeral arrangements, burial plots, advanced directives, organ donation, whether the Bible "allows" cremation, etc. Many of my patients are elderly and have faced these questions. But the younger the patient, the harder these topics are to discuss. This was the case with MB and he generally didn't want to discuss these topics. He would often wait until he had a crisis with his disease process before making a decision.
Often when we needed to discuss a difficult topic, I would tell MB that we needed to talk about it and he would close his eyes. I would tell him I knew he didn't want to talk and it really wasn't fair that he was paralyzed and could not leave the room - but that I would say what my concern was and then leave it to him to do whatever he wanted to do with the "concern du jour." I always promised I wouldn't "nag" him as I was not his mother. In his time, MB would deal with the concern.
After every one of these difficult conversations, I'd give MB the opportunity to fire me as his chaplain. I always wanted to give him the dignity of sending me packing if I'd overstepped my role. After several of these conversations and offers to let him fire me, he typed into his DataVox (the machine which talked for him), "Why do you always ask me if I want to fire you?" I told him that I wanted to give him a chance to send me packing if he was sick of my bringing up hard topics. His reply: "I'm not going to fire you. You are the cutest chaplain that hospice has sent me. If I fire you, they'll send some ugly guy!" Never let it be said that MB didn't have a sense of humor.
Last fall, MB contracted pneumonia. By this point, ALS had robbed him of all movement in his arms, legs, and even his neck was having difficulty holding his head up. He could not swallow at all - tube feedings were the only way he was able to eat or drink. His breathing was labored and he was sleeping most of the time as the CO2 built up in his system. To buy just a bit more time, he chose to have a tracheotomy and be put onto a ventilator in a long-term care hospital. At that point, he left hospice care and I did not see him ... until February.
MB's girlfriend called me at work to let me know that MB's 35th birthday was coming up on a Saturday. She invited me to an open house at the hospital where he was receiving care. She then told me he had made the decision to disconnect the ventilator the following Monday and donate his organs upon his death. He had reached the point of being sick and tired of laying in a bed hooked up to a machine. The idea for donating his organs was one of those hard conversations we had six months earlier.
I went to the birthday party for MB. It was very surreal. Some people knew of his decision to disconnect the ventilator and others didn't. It felt like a birthday party for a condemned man. I gave him a blessing and he thanked me for coming. I thanked him for not firing me.
MB's girlfriend called me in the early hours of Monday morning to let me know that he was scheduled to have his ventilator disconnected at 4:00PM. She asked me to come and be with her for support. I went.
It was crazy in MB's pre-op prep room. There were at least 25 people coming in and out, snapping pictures, talking, crying, laughing. Everyone saying their good-byes and being together one last time. The transplant team came in and I asked MB if his pastor and I could offer prayers for him. "Yes" came the voice from the DataVox. I told MB I would step back so his family could gather close. "Wait a minute" came the voice again. "Don't move ... I want you to pray right here right now." So I did.
"Jesus said, 'Unless a grain of wheat falls into the ground and dies, it remains a single grain of wheat. But if it falls into the ground and dies it bears much fruit.' May our Lord Jesus Christ bless your journey to the very heart of God. May God bless those who will receive life because of your gift. May God send the Holy Angels to surround you and give you peace. And may you join the saints this day in paradise. Amen."MB was taken to the operating room and disconnected from the ventilator. He died quickly enough that the transplant team was able to take his liver and kidneys. Three people received the gift of these organs from a man who made a conscious decision to leap off the ledge ... and into the arms of God.
