Monday, March 28, 2011

Leaping off a ledge

The idea of leaping off a ledge is not very attractive to me. I don't have suicidal thoughts and I really don't like heights very much. But there are times we leap off the ledge - mostly we do this figuratively through taking risks in our lives. Occasionally, it's done literally.

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.

Wednesday, March 16, 2011


It has been very heartbreaking for me to see the pictures and videos of the devastating earthquake and tsunami in Japan. For me, it is personal. I grew up in California and have experienced my share of strong earthquakes; albeit nothing as strong as the one in Japan, but strong enough to throw me around the room as I tried to make it to a doorway to brace myself for the shocks. Earthquakes come with no warning and can strike at any time.

But more than my own experience of earthquakes is my personal connection with people in Japan. I had the honor and privilege to be part of a delegation to the Nippon Sei Ko Kai, Diocese of Tokyo in 1996. Nippon Sei Ko Kai (or NSKK) is the Anglican Church in Japan and it has a longstanding relationship with the Episcopal Church as many of our clergy were missionaries to Japan.

I was part of a five woman delegation to the NSKK in 1996 consisting of two priests, one deacon and two laywomen (I was one of the laywomen back then). We were invited by the Bishop of Tokyo to come and engage in conversations about the ordination of women to the priesthood. At that time, the NSKK would ordain women as deacons but would not ordain them as priests or bishops. The NSKK's synod convention voted on a resolution that year to ordain women as priests - a vote which resulted in a split between the houses. Like the United States Congress, many national churches in the Anglican Communion have bicameral systems of governance consisting of the House of Bishops (made up of ... bishops) and the House of Deputies (consisting of priests, deacons and laypersons). Both houses have to vote in favor of a resolution to pass it. In the vote that year on ordaining women as priests, the House of Deputies approved the resolution and the House of Bishops voted against it. The Bishop of Tokyo was in favor of ordaining women as priests largely because of his experience of women priests in the United States - hence our invitation.

I was blessed to spend twelve days in Japan with our sisters and brothers in the NSKK. We spent time in Tokyo, Kyoto, Gifu City, Nagoya (1/2 our delegation went to Osaka), and even spent time in the mountains on retreat. It was an amazing experience and the radical hospitality of our friends in Japan was overwhelming. Their generosity of spirit and willingness to support the mission and ministry of a Church which comprises approximately .02% of the population was remarkable. Our trip there was just one year after the devastating earthquake in Kobe and the stories we heard of how the congregations responded to this disaster with generous gifts of money and time to help Kobe rebuild were amazing. One church had held a capital campaign to build a new church but, when the earthquake hit, the congregation voted unanimously to send their entire building fund to Kobe. Their rationale? "They need the money more than we do." That's stewardship!

Bishop Kato of the Tohoku Diocese (near the epicenter of the quake and where the tsunami hit hardest) is asking for our prayers. I ask you for prayers and one thing more. Please make a donation to the Episcopal Relief and Development Fund and direct that donation to the Japan Earthquake Response Fund. Go to: to donate online. Episcopal Relief and Development Fund sends 100% of your donation directly to the relief efforts. Bishop Kato and his staff are setting up a relief center in Sendai City and they need your help.

And for those of you who are wondering ...
18 months after our trip to Japan, the NSKK had another synod convention and voted again on the resolution regarding ordaining women as priests. It passed both houses overwhelmingly.