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C ~ Counselors are the Sherpas

In the following essay Tom Nishioka, friend and guest blogger, offers a beautifully written testimony to the healing benefits of counseling both during and after the death of his young wife.

 

“Climbing a Mountain to Get to the Other Side”

by Tom Nishioka

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Let’s say you have to summit Mount Everest. You’re not a mountain climber with any real experience, (maybe a bit in passing at most) but it’s just going to happen- you have to climb. Do you get to the bottom of Everest, the start of the trail, and:

a) Just set off walking by yourself, no map, no guide, no sherpas to help carry the load, no locals who have been before and know the terrain and who can help you choose paths of less danger and best passage? Do you think it’s something you should deal with alone, without asking questions or having anyone to bounce ideas off of, and that it’s a sign of weakness to do this any other way than solo, because you “can handle it”? OR…

b) Stop and ask questions of those around you, ask who has seen this before, ask for a list of the most experienced guides, interview them, and pick someone who will travel with you and get the benefit of their experience and knowledge. Do you also assemble a team of sherpas to help when you might be tired and your pack gets heavy. Do you get a map, and also talk to others like yourself who have done it, or read articles describing gear and planning needed, stories of others’ climbs in order to get a sense of what might happen as you walk into what is unknown to you. Is that weak, or is that being a smart captain of your mission, preparing yourself to get to the top and then have the ability to stand, look around, and choose your path down from there?

Personally, I don’t have any compulsion to climb Mount Everest; regular life is set up to provide challenges in the extreme.

I don’t really need Everest, I’ll tell you about losing my wife. This may be difficult for some to read, but to give you a reason to do so, I will tell you that despite it being the worst experience of my wife’s life, she also called it the most beautiful experience of her life.

I’ll explain in this essay.

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My wife, and mother of our 21 month old twin girls at the time, was diagnosed with breast cancer in 2009. It was not an easy case, and she went through 4 months of chemo, a double mastectomy and 2 months recovery, 2 months of radiation, 4 months of more chemo, 6 months of weekly flights halfway across the country to be treated by the President of the American Society of Clinical Oncologists with the newest, most promising treatment available only in one clinical trial with him in the Midwest. Of course, I continued to work throughout, with the help of a very understanding CEO and CFO. We didn’t have any family help. We hired a nanny for the girls, we spent as much time focusing on her and them as we could. Then in 2011, while being tested for intake into another clinical trial focused on preventing recurrence, the cancer was found to be back and spreading. We knew the prognosis, and in the particular sub-type of my wife’s cancer, in her very particular case, the chance of cure was 2% or less. Over the next 16 months of continuous chemo to impede the cancer, it nonetheless spread to her liver, her vertebrae, the outer surface of her lungs, her brain, and all over her skin. Weakened, she contracted pneumonia in January 2012, and endured 3 weeks in the hospital during which time she momentarily lost the ability to breathe, and where her lymph system gave out and bloated her 100 pound frame with legs and one arm swollen to 4 times their size. That bloating never went down, through more months of chemo and radiation to her brain. By May, she couldn’t really walk, and we got a wheelchair. It became harder and harder for her to eat and keep anything down, she constantly felt flu-ridden for all of 2012.

The girls were 4 years old, approaching 5, and old enough to talk and understand something big was happening. We talked and told them everything in specific words, even teaching them words like “replicating” to describe what the cancer was doing, instead of saying it was “growing” – because kids will hear that they are growing from everyone they meet, and we wanted them to be clear that they couldn’t catch cancer, that they didn’t give mommy cancer, that it was all separate.

A brilliant, loving, talented, beautiful, widely beloved friend, and well-read doctor, my wife spent her days mostly on a couch, hazily dozing in and out and constantly nauseated and in pain. Her spine was twisted by the cancer, tilting her over permanently. She couldn’t lie down for months because of the fluid gathering in her lungs, which I had to drain from both sides via 2 catheters every night. In the last 2 weeks in August, after another round of necessary hospitalization, I had to give here intravenous fluids and medications, 4 changes in a 24 hour cycle, so some in the middle of the night.

I was tired: physically, emotionally, mentally, in 10 different directions in each category.

The girls started kindergarten in September 2012, and the Saturday after the first week, my wife’s kidneys shut down. She lost lucidity, speaking gibberish, and we rode in an ambulance to the hospital. By Sunday morning she had lost the ability to speak. Monday morning at about 1am as I held her hand from the hospital bedside, her breathing slowed and slowed, and ceased.

I won’t leave you here, I’ll jump forward too. We were ok through this, we are ok, and our daughters are thriving – happy, joyful, normal second graders who have lots of friends, play imaginatively and do well in school. They talk about their mom some, and cry sometimes that they miss her, but the tears dry and they run into the world indistinguishable from kids in picture perfect families.

 

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One more thing before speaking of my conclusion: I had time to prepare for all of this.

Among the things I read was another husband’s analogy – a frog in a pot of water.

His wife too had terminal cancer, and he would tell this to people coming to visit on the way imagesback from picking them up at the airport. “We are so glad you came to see us, but take care of yourself, you are about to step into a pot of very hot water. There is the story that if you put a frog in a pot of regular water on the stove and turn on the heat, the water heats up gradually and the frog acclimates over time, never feeling sharp pain. Conversely, if you boil a pot of water and try to drop a frog into it, it will feel the pain and immediately jump out. What has happened in our house and the state of my wife’s health has occurred over time to us, so we sometimes don’t even realize how extreme it is. But you are stepping in to this suddenly. Take care of yourself, walk out if you need to, talk to us or others if you need to. Thank you for being here for us.”

There are analogies in the mountain climbing metaphor too – climbers acclimate to the harsh conditions and low oxygen slowly, progressing up the mountain and stopping to camp and get used to it. It is not an easy environment, and altitude sickness is common; no sign of weakness. Rather, it’s a sign of the very trying and difficult conditions.

There are differences in the experience of having a loved one’s death come on slowly and knowingly, versus a sudden and unexpected death. Neither is easy. But either way, the conditions can be trying and difficult, they can be akin to boiling water, or to such low oxygen that it can be very dangerous to your health.

 

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Conclusion: I did NONE of my wife’s cancer experience alone.

We called in all of our friends, our friends’ friends, even compassionate people and doctors imageswhom I cold-called. I’ll describe more of that in following stories. Some people disagreed with our openness, thinking it was a private family matter, but I didn’t care. The help we got was immense and incredible. It was that experience of people coming to us to help that my wife called the most beautiful of her life.

For myself and for the girls, I sought help from trained experts who knew the territory and had guided others before: social workers, psychiatrists, and psychologists who had worked with people losing a loved one, or who had lost a loved one. In fact, our team of researcher friends (more about that later) found me an organization called CancerCare that offered free weekly sessions with a trained social worker, by phone or in person. I did those sessions, later just once a month, from 2009 through the end of 2012. CancerCare staff spent their entire jobs helping patients and families of patients to cope – from logistics and information to helping with their emotions. From mid-2011, our girls went weekly to a play therapy group at Gilda’s Club, another free resource for patients and families dealing with 10629585_10152735298021117_2053185399803085782_ncancer. Three social workers there did two-hour group play and conversations with a group of about 10 children. After my wife died, the girls moved to a similar group for kids who had lost someone to cancer, and I moved to a free weekly group meeting for people who had lost a loved one.

For me, the weekly sessions were place to stop all the things that I was doing, stop all the work calls, all the emails, and just find what things I was thinking of and tell someone about them. Someone who would listen and remember over time, whose job it was to listen and who didn’t have to run after 15 minutes. Someone who had specific training and experience in helping people like me sort through the worries, frustration, anger, wishes, or sadness that came up, spurred by random events or connections. In the bereavement group, the social worker said almost nothing, we members just went around the room taking turns talking. Everyone’s path was different, everyone’s challenges different. Some people felt guilt that I felt none of, some people coped in ways I never would. But there were commonalities, and as I progressed into one of the longer-tenured members of the group, I could see the patterns of progression as new people came in, very close in time to their loved one’s death, early in their process, people in the middle, and people a year or more out from the death.

For my girls, not only did they get to meet other kids and feel like they weren’t the only ones imagesdealt the unfair deal, they got gentle guidance. They did arts and crafts, played with therapy dogs, went on field trips. But they also made “memory boxes” where they chose and kept special things that reminded them of their loved one, notes to their loved one. And when my wife died, the social worker helped me to think through helping the girls to concretize what had happened. My wife died in the hospital away from the girls, and wanted to be cremated. I wondered if I should bring the girls to the funeral home to let them see her lifeless body. Not an easy decision, probably no way I would have done that without professional guidance. But we did, and it was fine at the time, and the girls refer to it as a fact, not with any disturbance. It helped them even at just under 5 years old to understand and not wonder or wish too much.

Everyone’s experience is different, and the tallest mountain in the world is an overstatement of the risks and difficulty of dealing with a death.

But it can be, or at least sometimes can feel like, a slog up a mountain to deal with a loved one’s death.

For some, it can actually be dangerous.

You won’t really know, and it comes up in unpredictable recurrences for months and years.

But like crossing from valley to valley, you have to walk over terrain to get to the other side, to have your life keep moving instead of getting stuck on one side and blocked by the obstacle, constrained and defined by the obstacle.

Someone said to me: “Sure, you could fall apart with this, it would be understandable. But that’s not what your family needs, not what your friends and loved ones need. They need you to not fall all the way apart, to make it. And to do that you should take advantage of help, not try to do it blindly and alone. That’s what being a man, being a strong person is about in this situation.”

 

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