A Dream about Love and Loss

I’m a happily married man, but not long ago I found myself struggling with very strong feelings of love for another woman. Thank goodness I wasn’t acting on those feelings, but they were very powerful just the same. We had both become fascinated with the shamanic journey process and had been meeting weekly to share this interest. Because our friendship was strong, so were the journeys.

It all felt wonderful, but what to do? Should I remove all temptation by no longer seeing her? Should I go with the feelings and damn the consequences? Things had gotten to the point where something had to be done, but what? Finally I decided that a “journey” might help.

A journey is a little like a meditative dream with a purpose. One journeys to a “teacher” or “power animal”, states the purpose of the journey, and then pays attention to what happens. For this journey, let me first share a little background.

As you know from my other writings, our five year old son Timothy died at home in the middle of the afternoon of March 11, 1975. Family and friends spent the afternoon with us in our grief, but at seven that evening we were startled by a knock at the door. I say “startled” because no one ever knocked at our house. We were so informal that friends and helpers just opened the front door, called out a quick “hello”, walked in and started preparing lunch, or washing dishes, or joining a team member for their eight hour shift with Timothy.

But this time Julie and I were greeted by two strangers in business suits. In a quiet, unctuous voice one of them said, “Mr. and Mrs. Snell, we’re very sorry about the loss of your son. We’re here to take his body to the funeral home. Just show us where he is and we’ll take care of everything.”

As Julie and I looked at each other we knew we didn’t want these strangers to invade our home. We didn’t want them to go upstairs into that sacred room where Tim had just died, zip him up in a body bag, and haul him away. So Julie turned to me and said, “Why don’t you get him? You were the one to bring him down to lie on the big bean-bag cushion whenever he wanted to be with us during meals. You do it, and we’ll join you.”

So Julie and I and two or three of our volunteer crew trooped upstairs and into our big room. As Julie gently pulled back the covers, I reached down, picked Tim up, and held him close. With his head over my right shoulder, and his cheek next to mine I stepped out of the room and started down the corridor.  

It’s at this moment that the recent dream / journey begins. In the journey, my teacher has taken me to this moment so many years before. For the longest time I stand there holding my son’s body ever so close, his soft cheek on mine. Finally my teacher says, “This is how love is. Infinite love held right next to the possibility of infinite loss. Have courage. Do not run away from the pain. Do not try to protect yourself. Love and grief are intimately intertwined. If you wall yourself off from the pain, you will also wall yourself off from the most precious of all gifts: infinite love. For with love the pain is bearable, and with pain the love is much more precious. Don’t be afraid to live life fully and to love again.” With those words the journey ended.

So from then on, whenever my friend came I would allow myself to feel the intensity of my love for her, and when she left, I felt the deep loss of her going, and between visits life returned to a delicious state of normalcy.



The Power of Relaxed Listening, by Tom Snell

The Power of Relaxed Listening, by Tom Snell

When a family is in crisis and parents do not have the resources to release their fear, anger and pain, those feelings can spread through the household like a poisoned river overflowing it’s banks, and their children can inhale that fear and pain and make them their own.  I know because that’s what happened when our family fought cancer in our seven year old son, Christopher, almost 40 years ago. We had no resources, hospice didn’t yet exist, we had no guidance, and we didn’t yet have listening skills.  We were so upset that we were barely present for Christopher.  As a result, all his fears of the cancer came to a sharp focus during his many chemotherapy treatments. Every two weeks, for the length of time it took to drip the chemo into his veins, it took two nurses to hold him down while he yelled and thrashed.

Near the very end of Christopher’s crisis we discovered classes and workshops to learn communication skills that ultimately allowed us to be present with our feelings and our children. Here are some key factors on Relaxed Listening that helped to change our family’s life just before we were thrown into another crisis.

Key factors of Relaxed Listening
First of all, any adults doing this for a child should be also doing it for themselves. Any parent going through a medical crisis with a child is dealing with horrific feelings, and it’s very difficult to be fully, relaxedly present with anyone, let alone with one of your children.
 
So here’s what you do.

• Find another adult you like and trust.
• Split the time equally. You might start at five or ten minutes each and slowly work up to a half hour as you get used to the process. It’s good to have an accurate timer. Be disciplined at keeping the time equal.
• Confidentiality – NEVER talk about the content of someone else’s session, what they said, did, etc. Don’t talk to them about it after they stop, the next time you get together, nor with anyone else. This is essential because eventually you’ll find you’ll want a lot of safety.
• You’ll start with one person as listener, the other to be listened to; then, after the time is up, switch roles.
• THE LISTENER – The listener just listens. No feedback, no suggestions, no ideas to help “solve their problem”, no telling the other what their story reminds you of. Just listen with your full attention on your partner. Be fully present no matter what they say. Look at them rather than somewhere else. If it’s okay with them, it can sometimes help to hold their hands, but it’s up to them.
• THE ONE BEING LISTENED TO – For the other, it’s an opportunity to have someone really listen to you – you can talk about anything, but if you draw a blank, start with something pleasant in your life that happened recently, then, if nothing else comes, start sharing your life story.
• When the timer goes off, switch roles.
• The person being listened to may just talk but they may also laugh, cry, shake, or get angry at what’s been happening in their life. All this is okay. Just continue to listen.
• With a child, the adult is giving one way time. It is essential NOT to expect anything back, or to have any expectations at all.

A year after Christopher’s treatments stopped, our four-year-old son, Timothy, contracted a different form of cancer. This time things were radically different because we were getting regular sessions with an active listener.  We paired up with someone who could listen to us; not only talk, but yell and scream and sob our way through what was happening.

This new way of communicating enabled us to be fully, relaxedly present for every procedure, needle prick and visit to the hospital. One of us was always there holding Timothy gently when he needed it, reassuring him that it was okay to yell and cry, and holding off the medical staff for the minute or so it took for him to “get ready”.  

 The results were amazing. Here’s just one example. Over a year’s time Timothy had to have four eight-hour operations. For the first, he’s a “normal” child, not wanting to leave us and crying as the nurse wheeled him through the OR doors. The fourth operation, however, was dramatically different. This time he’s sitting up on the gurney, favorite stuffed animal under his arm, waving goodbye, and grinning! By this time we had learned to take care of ourselves when we weren’t needed, so we’d left the hospital to rest and relax until he was moved into intensive care. On our return, as we came out of the elevator, all the floor nurses crowded around, all eager to talk at the same time. They said, “It was so extraordinary. The OR nurses NEVER come up to the children’s wing. They just don’t. But this time they came to tell us how amazing Timothy had been. In all their experience in the OR they’d never seen anything like it. When they wheeled Timothy into the OR he immediately took complete command, chatting with everyone, teasing, cracking little kid jokes, and getting everyone to laugh until they put him under.” And this at only four years old!

Our two son’s illnesses affected the entire family. Our daughter Sarah felt abandoned during those years of caregiving and bereavement. One evening, when my wife and I tried to get a brief break by going to a movie, little Sarah sat on my foot and clung to my leg for dear life. So I hobbled around the room putting on my winter clothing and hoping she would let go, but she didn’t. I pried her loose, handed her to the baby sitter, and dashed out the door.
The second time we wanted to leave for the evening, my wife and I decided to use the new form of counseling we had been learning. So when Sarah clung to me the next time, I picked her up, held her gently in my arms, and said, “We’re going Sarah.” Immediately she started to sob. So I just quietly held her. I didn’t say anything, didn’t try to shush her, didn’t say “There, there dear, it will be all right.” I just tenderly held her. After what seemed like forever the crying reduced to a whimper, so I gently took hold of her arms that were wrapped tightly around my neck, and even more gently pulled as though I was going to pry them free. Again I said, “We’re going Sarah”.
Her tears immediately resumed. Again and again we repeated this for perhaps 30 minutes. Each time the crying fizzled out I said, “We’re going” and each time she would hold tighter and wail into my shoulder. Finally after about 30 minutes she leaned back, gave me a big smile, climbed off my lap, and waved good bye as we went out the door. A week later we did the same thing, but only for 5 minutes. That’s all she needed. Never again did she cling.
Much later, when Sarah entered high school, she found they didn’t have Spanish classes, a subject she had loved in middle school. So she went to the head of the Spanish Dept. at nearby Dartmouth College and offering to baby sit in exchange for a year of lessons. The following summer the professor took a sabbatical in Spain and took Sarah with her. So at age 16 Sarah spent a year in Europe, going to school, helping with the professor’s children, and traveling.

  She went from a clinging, insecure 5-year old to an independent adventurer, and I like to think that the listening we had done played at least a small role.

Now, thirty five years later, Christopher and Sarah are thriving and in their forties. But little Timothy died just after he turned five, and our friends who had learned these listening skills put them to wonderful use assisting us with our grief. For their help I am forever grateful.   

And one more note about crying, especially with children. In much of our culture, we have equated tears with the hurt itself. We’ve thought, incorrectly, that if we can get the person or child to stop crying, the hurt will stop too. But, it turns out; tears aren’t grief. Let me repeat that, tears are not grief! Tears are the outward sign of the HEALING of grief. We’re seldom fully healed of grief because we’re seldom allowed to cry enough to let the natural healing process go all the way to completion.



When did you first hear of palliative care?

My story happened over 35 years ago, when hospice was not yet a reality in this country. As the story opens, my first wife and I were raising four children while teaching at a small Quaker school in southern New Hampshire where we were money poor but community rich. One spring we were shocked to learn that Christopher, our seven-year-old had cancer. After two operations, a couple of years of chemotherapy, and a million trips to Mass General Hospital (MGH) in Boston, he seemed to be fine (he’s now a healthy 45 year old). But then, a year later, lightening struck again when we learned that our four-year-old, Timothy, had a different form of cancer, one that had already spread to his lungs. We spent more than a year practically living on the road to MGH, with 4 major operations, radiation, and extensive chemotherapy. Despite these difficulties, Timothy was irrepressible, playing with his siblings, teasing and being teased by the students living in our house, and making friends while spending a week with us at a family camp on Lake Winnipesaukee. In September he even insisted on starting nursery school. But despite all this, things were not going well, and finally in late February we made our last trip to MGH where they told us there was nothing more they could do, that he could stay there or we could take him home. Tim wanted to go home so we bundled him up against the February cold, drove home, and took care of him until he died two weeks later.

That’s the sequence of events. But the real story is in the love and the miracles that were happening all around us. Here are a just few.

One of the MGH doctors hears of all the driving we’re doing back and forth and that we can’t afford hotels, so she offers us the use of her apartment near the hospital.

A former student, living in Boston, comes again and again in the middle of the night to spell us from our long vigils in the ICU unit. He later becomes an MD.

Our summer babysitter, a high school student from Maryland who we had hired to help with our other children, flies back when she’s learns that we’ve brought Tim home for the last time. She fights with her parents who want her back in school, but instead becomes one of the team that sits with Timothy in pairs in eight-hour shifts. She’s now a full time pediatric hospice nurse, easing the passage of numerous children in Maryland.

Two other students, now graduated, also return to be with us, one coming all the way from Michigan and the other from Texas.

Soon we have a whole crew for those last two weeks. We had no qualms about putting people to work, so in addition to those sitting with Tim, people are cooking, washing dishes, running errands, and helping out in a gazillion ways. We were very informal, so people were sleeping on floors or hot bunking where the off duty crew wakes up the next pair, then crawls into their warm bunk.

One of the greatest gifts came from all the people who helped us emotionally. They would take us into a room at the back of the house, close the door, and gently encourage us to talk or scream, to yell or rage, or would hold us while we cried. Near the end it would have been impossible for the two of us to sit with him if it hadn’t been for this fabulous emotional resource.

To give you a feel for what it was like, let me share one story in depth. It comes from my book Beowulf’s Apprentice and has been edited for length. My wife is speaking.

“One afternoon I got a phone call from a woman in Jaffrey. She’s a born-again Christian. She said, ‘Can I come and pray with Timothy? I don’t want to come, but God has told me I must.’

“I asked Timothy and he said, ‘Okay,’ so she came that evening. When we went upstairs, Tim was propped up as usual against his pillows and drawing quietly on a piece of paper I’d given him.

“About four of us gathered around and held hands in our usual Quaker silence. Meanwhile, the neighbor put a hand on Tim’s head and prayed, sometimes in English, sometimes in tongues. It wasn't passionate or hysterical, just quiet. In English, she said something like, ‘Jesus, take this child. Make him whole and bring him health.’ Then she said, ‘Jesus, take care of his parents, Tom and Julie. Bless his older brother. Bless his two sisters, Tamara and Sarah, and make them whole.’ All through this Tim kept scribbling on his piece of paper. Finally she finished.

“As she was leaving, she pulled me aside and told me how she had been so scared about coming to this house where it seemed this little child was dying and must be in agony. She had felt critical and angry with us, thinking we had done the wrong thing and that he should be in the hospital. It had gotten so bad she didn’t think she could come.

 “‘But God just wouldn't leave me alone,’ she said. ‘He told me I must go to your house and pray for Timothy. So I went. The minute I walked in the door I realized how utterly wrong I had been. As I stepped inside I felt an incredible peace. All of you were doing normal things. Your children were happy and smiling and glad to see me. Your mother greeted me and smiled; your sister was so peaceful. Then, when I saw Tim in bed, I knew that I didn't have to feel sorry for him ever again. I know why God wanted me to come here: not because Tim needed me, but because I needed to be healed of my judgment of you and my fear of dying.’”

What we did when asked the big question

For this story my first wife, Julie, is speaking:

Sometime in the late fall, perhaps 10 months into our youngest child’s cancer [a Whelms tumor that had metastasized to his lungs], he and I had an incredible conversation. Timothy was midway between his third and fourth major operation at Mass General and he was feeling pretty good. I was settling him down for a nap and out of the blue he said, “Am I going to die?”

I gulped, paused, and then said, “Well, I don't think so, but it's a possibility. As long as we're fighting this cancer thing, it's a possibility. We don't know whether we're going to win or not.”

Then he wanted to know, “What is dying like?”

“Well,” I said, “it's like leaving the house and not living there anymore. You’re going to leave your body and not live in it anymore. Your body won't have any more feeling.”

He thought about that for a while. Then he said, “Well, where do I go? If I don't live in my body anymore, where do I go?”

I said, “Well, God will come and take you to a place that is very nice. You’ll be with people that you know but who have died, like David Foster and Phyllis Kerry, Aunt Sarah and Uncle Grant. They will be there to meet you, to make you feel loved and comfortable.”

He said, “Will you be there?”

“I’ll come later – when I die, but no, I won't be there, because I have to stay here as long as I'm in this body.”

When I said that, he crawled into my lap and started to cry. He didn't like the idea of being separated from me. While I held him I said, “You'll be a spirit, a soul, and you'll be able to come back and feel me, but I won't necessarily know that you're there. You can come back and be with me anytime you want. I'll kind of know you're there, because I believe in life after death, and I know that you can do that, even though I may not be aware of you the way I am aware of you sitting in bed with me right now.”

“What about Daddy?”

“Well,” I said, “he doesn't believe in life after death, so he won't know that you are there the way I do. You can still come and be with him; and when he dies, he will come and find you. There’ll be a time when we'll all be together again.”

He thought about that for a long time, and then he came up with the most incredible thing for a four-year-old. He said, “Well, that's like God, isn't it? God is spirit and God feels you all the time, but you don't feel him except once in a while.”

And I thought, “Wow. Yeah. That's what it's like.” He was upset at the idea of separation, and of leaving what was familiar and going someplace else, but he really understood.

Our Week at CFO Summer Camp Or How did you keep some sense of normalcy in your life?

My wife Julie is speaking:  

In the summer of 1974, six months after we had discovered Tim’s cancer, I made arrangements for all of us to spend a week at CFO Camp on Lake Winnipesaukee. At the last minute we learned that Tim had to be at Mass General for a third major operation. So after spending the week with Tim in the hospital, I drove home, packed up, and took the rest of the family to camp on Friday. Meanwhile, Tom stayed with Tim. On Monday morning, just a week after the operation, he was ready to leave. Tom got Tim dressed, checked him out of the hospital, and drove north to camp.

Tim arrived at noon, a massive bandage covering his chest. At this point he’s a skinny little four-year-old, but eager for camp. While Tom kept track of the other kids, I focused on Tim.

From the beginning we had our minds set that, despite Tim’s cancer, he was going to live as much like a normal child as possible. That meant that we had to learn not to hover over him like mother hens, nor worry that he might fall down and split his stitches open.

Within hours of arriving at camp, Tim made friends with a 12 year old named Andree. I could see that Tim adored this kid and wanted to play with him, so I pulled up Tim's shirt and showed Andree the huge bandage covering his incisions. I explained that Tim had a cut that went from here to here with lots of stitches, that he had just had one lung out and that he had cancer. Then I said, “Tim mustn’t fall and he can’t be roughhoused with. Nobody can hit him. If you want to play with him, that's fine but you are the older kid and I'm really counting on you to take care of him as if he were you're own precious little brother.” And then we simply let Tim go off with him.

What we didn’t know was that Andre had a reputation as a real problem! People at camp claimed that he was hyperactive and pre-delinquent. The only child of an overly possessive mother and no father (his father had died in the Korean War when Andre was very young), Andre was the kid that everybody in Portland was praying for because he was a real basket case; very irresponsible and rough, or so everyone said.

Well, I didn't know all these things about Andree. Instead I watched the most incredible love spring up between them during the week of camp. I don't think Andree had ever had a friend before, let alone a little brother that adored him. Not only did Andree take good care of Tim, he would do anything Tim asked of him. If Tim wanted to sit on the beach, they did; if Tim wanted to explore the camp buildings, Andre was with him. When they ate by themselves in the camp dining room, I would simply tell Andree, “I want you to bring Tim back to our cabin after lunch because he has to take a nap.” Many times Andree would take a nap with Tim. He would bring his cars and they would lie down on the bed together.

Meanwhile the people who knew Andree were coming to me and saying: “Do you know about Andree? He's not dependable. I wouldn't let my kid be with him if I were you!”

And I would say, “Well, Tim and Andree seem to like each other and it seems to be working out OK.”

Two weeks after leaving CFO, Andree sent Tim his favorite stuffed animal, Cuddly. This toy had been a big part of their play at CFO, so when Tim opened the box, he lit up and said, “Oh, now I know that Andree really loves me because he gave me his best friend Cuddly!”

Months later Andree and his mother came to Tim’s memorial service. Andree wanted to see everything. We showed him Tim’s bedroom and the bed where he had slept, and we showed him the place where Tim died. Then I told them that in October, when Tim had to return to Mass General for his forth operation, Cuddly had gone with him. I told them how Tim had sat up on the gurney, baseball cap covering his bald head, Cuddly under his right arm, a big happy grin on his face, and a cheerful wave to us as the nurse wheeled him through the operating room doors.