I love having lunch with Mary Ellen. We begin with cheese, crackers, veggies and dip while we kibitz about our lives. Mary Ellen was on the search committee that called me to the church. She is a retired English teach from the same high school that I attended. (I'm so grateful that I never had her as a teacher; I was a serious underachiever in my youth.) She sports a stylish short, platinum blonde haircut and she wears sandals well before Easter and well into the fall. She's been an elder for most of my time as a pastor, re-vamping the Outreach Team and working toward more encounters with hurting, broken people in the world. I'm deeply grateful for her skill set, her honesty, her heart and her ministry.
After the cheese and crackers, she whips up her usual Caesar salad with shrimp. I hardly ever eat fish because Pete is allergic. She knows this and that's why she always makes me shrimp. She says a prayer for the meal, giving thanks for friendship and for lengthy lunches together. Amen.
Mary Ellen knows loss. She is acquainted with sadness. I would even call her an expert on grief. She has buried three husbands and two best friends. She lost her mother to Alzheimer’s. She has also quilted together an incredible family from the broken pieces of three families. She loves them; and they love her. She is grandma in her own unique way while always honoring the other grandmothers involved. When Mary Ellen cries, her tears come in every color of grief. I have learned to stop dead in my tracks when she begins to cry. Her tears have shown me colors of the rainbow I did not know existed.
One of her best friends that she watched die was also a member of my congregation, Jean. Jean was diagnosed with ALS. While Jean suffered, I often found myself at Mary Ellen's lunch table sharing wine and sadness.
“Mary Ellen, how are you doing with Jean?” She gathers tears in her eyes, finds a tissue and says, “I don't know why I bother with mascara anymore.” After a pause and bite of shrimp, she tries to start again, “It's hard, it's really hard. She's suffered already with the breast cancer.” Sniffing, she finds her forceful voice to say, “And she fought hard, she won and look at this now. I can't bear to see her suffer like this.”
I finish chewing and say, “How can I help you through this?”
This afternoon, she began talking about her mother and the awful disease of Alzheimer's. “I thought it was the worst, until this happened to Jean. This must be the worst diagnosis.” She continues with, “I don't ever want to go through this. And I won't. I don't think I've told you this yet but I'm going to take my life if I ever get Alzheimer's disease.”
Looking up from my salad I say, “I'm sorry; what?”
“I might as well tell you now, Jean and I have spoken about suicide at length. We've even purchased this book. I will lend it to you when I finish. It's all about how to kill yourself. And did you know that none of the options are ever really secure. The author suggests that you always put a bag over your head just in case your first choice doesn't work.”
I take a deep breath, put a smile on my face, pour another glass of wine and say, “Stop, just for a second.”
She laughs with her wonderful chuckle, shaking her head at this youngster pastor who she has grown to love and need. “Start over. Jean wants to kill herself?”
“Well, we've talked about it but I don't think she'll be able to do it. She's always been such a good, Christian girl. But we've been looking into which pills she is taking and how she could collect some on the side. The thing that makes me most mad is that there isn't assisted suicide in NJ. I told Jean, 'I love you but I'm not going to jail. You're going to have to do this on your own. I'll be there with you but I can't help you do it.”
“What does Jean say to that? I ask.
“She agrees and also laments that there is no assisted suicide in NJ. If there was, this would not be an issue. She would be able to talk to her physician about her wishes. The problem with ALS is that by the time it's too much for her to handle she won't be able to do it herself. She'll be too weak or she'll have lost the use of her arms or even her voice.” We pause and look at one another.
Who gets to have these conversations in our culture? Clearly doctors don't. Families may. And if they're lucky – pastors get to have these conversations.
My training would tell me that thoughts of suicide are signs of disease, severe signs of an unhealthy human being and that this conversation needs to be shared with a professional. After a second consideration, I realize that I am the professional with whom it is being shared. Don't get me wrong, I don't have delusions of grandeur and I “refer, refer, refer” all the time. This conversation was meant for her pastor; I am her pastor.
So in all of my inexperience, I respond with these words, “well, I don't think that any of this should happen alone. I don't think anyone should die alone and I certainly don't think any of us should go to jail for helping someone die.” I don't know exactly what that's going to mean practically for Jean or for you. But when the day comes, if the day comes, I want to be there. I think your pastor should be there.”
Jean wasn't able to take pills to end her life. Instead, she entered hospice care where a nurse administered doses of morphine. Mary Ellen laid beside her on the hospital bed. Along with others, I sat beside them. For now, the book about how to kill yourself is on a shelf.
This reflection was written over my summer sabbatical. I share it this week in memory of a beloved congregation. I watched a movie this week that reminded me of her. I saw her niece last week. And I'm going to the theater tomorrow with one of her closest friends. When we choose community, we experience life exponentially - the good and the bad, the happy and the sad. Pete electric wheelchair is a hand-me-down from Jean. We remain so very grateful for her life.
A woman on the committee that interviewed me for my current pastoral position was assigned the task of asking me a few questions on behalf of the committee. In the conversation, we got talking about my studies in seminary; she was a classics major in undergrad who went on to teach middle school students. She was retired at this point, enjoyed reading and gardening. She had two large, grey poodles who I would later find out were trained as therapy dogs. The older was a bit better at visiting people in the hospital; she was more docile in nature. But the younger, rambunctious one brought the livelihood that many in the nursing home enjoyed. Jean was a breast cancer survivor who found many ways to “give back.” The decision to train her dogs as therapy dogs was one way that she could serve people who were in pain. She was not afraid of pain.
She mentored other women going through treatment and she spoke at cancer groups. The first thing I noticed about Jean was her speech pattern. She spoke intentionally with a little rasp in her voice, slowly – very slowly, like she had a hard time getting the words out. Listening in general takes patience so with Jean, we found a tad bit more patience.
Jean was a church person. Her parents raised her in the Baptist tradition and she knew her way around the Bible really well. But with her knowledge of the classics, she also knew her way around mythology and world religions. She was the leader of one of the small groups at our church. An interesting group of people who followed the thread of their interests, finding resources along the way. Jean and I spoke often about our theological journeys – how did we go from memorizing bible verses to understanding the Bible as the stories of the faithful as they sought to understand God.
Jean and her husband Charlie sat to my right about 7 pews back on the side aisle in church. Always ready to worship, always quick to encourage, and always ready to “help out.” She had served as an elder for years, specifically functioning as the clerk of session (the Presbyterian position on the board of elders who keeps the minutes and keeps the sanity.) She'd served a variety of committees, mostly the mission committee as she was deeply committed to social justice concerns. She and her best friend Mary Ellen were responsible for the Heifer International Booth at the Mission Fair each year. Decorating the booth with farm dolls and replicas of barns, they wore themselves out talking about the gift of a goat or how a few chickens could sustain a family for generations. While Jean was committed to brokenness around the world, she found herself drawn to conversations with people in her immediate sphere of influence – conversations about our personal brokenness. And the church – well, that church has its share of personal pain. So Jean was invited to serve as a Deacon right around the time that I invited the Deacons to begin having a conversation about pastoral care.
Many times, the Deacons of churches end up taking on all kinds of “helping” ministries: they organize taping the service, or arranging for chancel flowers or take care of fellowship time. Those ministries are needed, but Jean was asking for more, “How can we be more intentional about providing pastoral care to those in our congregation who are hurting, who are broken?” And thus began our journey from a deacon board who “helped out” to one who befriended others.
Jean was a strong leader, some might say strong headed. And yet she couldn't have weighed 120 pounds. She was almost feeble looking, until she shared her opinion of course. She had short, salt and pepper hair that was always styled. She enjoyed make up and jewelry and so a pair of faded jeans, were paired with a yellow and blue long sleeved cotton top was matched with a chunky silver necklace and matching earrings. She wore glasses and had caring, serious, blue eyes decorated with a tasteful amount of mascara and eye liner.
She set about in her own style to rework the board of Deacons, organizing the “families” in the church so as to provide optimal care. She began to distribute the more painful situations: an elderly father died, a child went to college for the first time, a husband diagnosed with MS, surgery on a cancerous tumor or chronic depression or fibromayalsia. Her organizational skills were unmatched and she ran the Deacon Board like a swiss watch – until she was diagnosed with ALS, Amyotrophic Lateral Sclerosis.
She was devastated; we were devastated. She and her husband lived on a dead end in Hillsborough, just across the canal from church. She escorted me to their glass enclosed patio – clearly her favorite room in the house. She sat on the couch and I sat in the flowered chair opposite her. We were surrounded by 30 plants that she had tended with her own hands. The feeble, shaky hands that now produce horrible penmanship. She had a list beside her that read:
Beth - why me
“Jean, how are you?” She began to cry and that was the end of our conversation. I moved to sit beside her on the couch and held her hand while she cried. Occasionally, she would look out the window, attempt to fight back tears and find words. But the tears won. Instead she would reach for another tissue as I squeezed her hand tighter or rubbed her back.
From the ALS Association's website:
She fed her body with the best organic produce. She exercised religiously. She prayed vigorously. She read voraciously. And yet her body is no longer nourishing her muscles. Beginning with her hands and now that I'm holding one in mine, I can feel the lack of form between her thumb and forefinger. I began to cry too. I can still feel the pain of those 45 minutes together. Not physical pain yet, just raw pain. Pain without words, pain of finding yourself so small in relationship to something so devastating. Pain of life lost too soon. Pain that makes talking about "why me?" unrealistic.
"Well," she said, "I'm going to start dinner now." I kissed her lightly on her forehead and said I'd see her on Sunday. “I love you Jean.” “I love you too,” she said slowly with her signature raspy voice.
What is this blog about?
These are some of the reflections that I am fashioning into a memoir about coming to peace with my husband's diagnosis of multiple sclerosis.