Thursday, June 2, 2016

My Grief

My mother died on April 11th, 2016.

It was sudden, very unexpected. She lived 20 minutes away. We were very close.

So now, grief.

For 20 years, I've sat with grieving people suffering from all kinds of loss. Loss of a child, parent, spouse, sibling and friend. Sudden loss, gradual loss, traumatic loss, graceful loss. I've witnessed death and the dying process hundreds if not thousands of times. I've had years of education, training and experience. I've written books on the subject that have helped thousands, and taught my techniques of coping with grief to thousands as well.

But this was my mother. My dear, sweet mother, who first sat me down and taught me to do most of the important things I cherish in my life.

I've learned a few new things about grief that training and professional experience didn't teach me. It's been less than two months, and the arc of grief is long. Very long. I'm sharing these to help people who are suffering from grief who might feel alone or unprepared for their pain. I expect that there will be new pieces of information along the way.  But so far, here's some morsels:

1) Grief sucks. This is really hard to convey in any other words. We all have our set of beliefs, or lack of beliefs, but there's no mistaking or sugar-coating this simple fact: It's really, really hard. Sure, it can be meaningful. It can be a lot of things. But from  the moment I wake up in the morning to the moment I fall asleep, it's impossibly difficult. The pain is massive. I have an acute sense that this pain of grief is a species-wide event. It's so much bigger than me, my relationship to my mother. It feels like a vast realm of the collective unconscious that spans the entire span of human existence.

2) The fog of grief is not to be underestimated. The forgetfulness is daunting. I have an incredibly diminished capacity to multi-task or remember things. Conversations I am somewhat aware of seem to have vanished in a blur. Things I did that first week feel like a dream. There's countless items that were sorted that seem to have disappeared, no doubt kept in a "safe place" at the time. That safe place is clearly not my brain.

3) Some people can be really awkward about being around you. Most people really don't want to know when they ask "How are you?". It's nothing personal. Just shrug and move on. Some people don't even want to talk to you. Perhaps they think it's helpful to give you space? Who knows. I've learned that it's a waste of resources to try and figure out these people. Move on to the ones who feel comfortable being around. The only thing worse than being asked how you are is not being asked how you are. There are no right answers on how to behave. Give people room to mess it up.

4) Give yourself room. The Pain is so big, it's got a life of its own, and it might not match yours. Healthy self-care is essential. Be kind to yourself. Go out of your way to find healthy ways to cope. Meditate. Exercise. Eat plants. Don't drink alcohol. Stay hydrated. The last thing you need with all of the pain is getting sloppy or unhealthy. The path of nihilism, that what you do doesn't matter because the pain is relentless, is wrong. The pain feels vast and endless, but what you do does matter. The choices you make of how to face the pain will determine who you will be as you grieve.

5) Expect nothing. Don't expect straight lines or finish lines in grief. Don't expect pain. Don't expect relief. Each day, each moment is full of surprises that can be pleasant or unpleasant. Be open. There are a million triggers a day that are impossible to control. There are also a million opportunities for joy that are easy to overlook. Try and be present. Just try.

6) Keep your heart open. See #4.

7) Don't be an expert. Be human.

Sunday, February 14, 2016

Why Aren't We Ready for Cancer Survivors?

After nearly 18 years of caring for people with cancer, I've seen some remarkable improvements in cancer treatment. Diseases once assumed to be life limiting are more chronic. Many more have had years of quality life added to otherwise dismal prognoses. Certainly, much work needs to be done for a whole host of cancers and in improving treatments. But to deny the progress that I've seen with my own eyes would be disingenuous.

You would think that society would be enthusiastic about all the cancer survivors out there. Unfortunately, society is completely unprepared.

It's so frustrating for me as a professional, I am sure even more frustrating for the people I try to help. There are two socially acceptable ways you go through cancer: 1) lose a brave battle, or 2) have a wake up call. Either of these simplistic narratives has the same predictability-- a beginning, a middle and an end.

What about the thousands, maybe millions in between? The people who got cancer, did their treatment and are disease free. BUT. Exactly-- disease free, but...

But neuropathy. Chemo-brain. Deconditioning. Limited endurance. Loss of senses like taste or smell. Feeling different. Looking different. Thinking different. All those colleagues who disappeared during the illness. The other ones who moved into your work space.

Whole rounds of doctor's appointments that can take up an entire afternoon, days, for months or even years after a cancer diagnosis. "I thought you were fine" is the most common retort. I'm sure the intention isn't to push uncomfortable buttons about fears of recurrence, but that's exactly what it does.

What about the employer who isn't willing to have an employee disappear for a week every 3-6 months for follow up appointments? That employee already ate up all their sick time.

They get fired. Sure, not for being a cancer patient, but for missing work. It's all legal.

Too much affected by cancer for full-time work. Over qualified for part-time work.

Lately the only safety net available to this growing population of cancer survivors is social security disability. Some of the lucky ones have employee long-term disability as well. But what a horrible predicament-- survive cancer, but now you have to amplify your general helplessness and hopelessness on a disability application because otherwise you'll get fired.

Society isn't ready for cancer survivors.

Society is losing its brave battle with cancer.

So frustrating.

Thursday, January 28, 2016

Dreams of Memories

My job as a psychologist is not what probably comes to mind when you think of psychotherapy. For a good chunk of each day, I spend time with people in the hospital dealing with a cancer diagnosis. Most have just had what will turn out to be life-saving surgery or chemotherapy. But many of my inpatients are hospitalized because their health is too precarious for them to be home.

It was one of those days in the hospital.

It seemed like every room I walked into had some heavy things going on. Big decisions to make. Incredible questions to answer. Uncertain futures to predict.

There was the overall feeling-- life is slipping away too quickly, time is running out. Mind is clear, body is failing. Relationships are being torn apart too soon. There are still dreams of memories to be made.

It doesn't seem fair.

As a health care provider, the known path is to build a wall. Don't get too close. Don't get to personal. Don't feel their fears, don't fall into their arms. As an old book once dictated, "always remember, you're not the patient". Mutter some line about hope and positive thinking and quickly leave the room. It's "them", we are "us".

That doesn't seem  to help.

The supposedly riskier path is the uncharted territory-- at least in health care-- of the open heart. Let's step into this darkest part of this cave, together. The person I am with is too sick and weak, perhaps also overwhelmed by pain, to navigate it alone. Here, we can use the light I can shine to illuminate these dark walls, scatter the scary shadows. Let's feel out the path, together.

Into this space of light in darkness, unexpected things begin to happen. Time seems to stop, even for a moment. When you come out of a conversation in which you've had a wall up around your heart, time seems to be going too fast. But that wall isn't just for the patient, it very quickly takes over your life. It amplifies this sense of powerlessness in the face of suffering.

It seeks to perpetuate itself. It seeks out unhealthy coping to numb the natural state of existential terror that is life. Alcohol, junk food, tuning out instead of turning on the experience of life and relationships.

The open heart that allows the light of compassion to shine-- into that space, time become irrelevant. Life feels deeper because it's being deeply felt. Coming out of these conversations feels like connecting to something much, much larger than just another person. It feels like tapping into something much grander, something cosmic.

I suspect this is what Martin Buber was referring to as "I and Thou". It's a sacred space, even if God doesn't feel present or caring. This is the opening that brings healing.

It also seeks to perpetuate itself. But this is about turning on to life. Light seeks light.

Once ignited sufficiently, the light of compassion seeks to keep itself burning. For me, this is the motivation to wake up early, meditate for an hour, work out. Keep that light lit. I might not know why I will need it on any given day, but it needs to stay lit.

The darkness is all around all of us. If we don't ignite the light within, the darkness will take over.

Tuesday, December 1, 2015

Reflections on fasting

Since March 2015, I've been following a weekly 24 hour liquid and social media fast. The first question most people ask is, "why?".

There are many reasons.  There's the sentimental reason that for many Indian households, Tuesday is a holy day, similar to the Sabbath in some ways. Fasting on Tuesdays is an ancient tradition, and following this tradition makes me feel connected in some small way to my ancestors.

Typically, they would pick a food group to avoid once a week-- onions, garlic, salt, sugar. I chose to abstain from solid food from dinner Monday night until breaking the fast with dinner Tuesday night. Instead, I have liquids only-- a green smoothie and a large tumbler of ginger-lemon-cayenne pepper water that I prep on Monday nights.

I do it because it's tough. It's definitely not easy. But as the months go on, it becomes something I look forward to doing.

In the beginning, I was having a power-packed smoothie of berries, greens, coconut oil, almond butter, turmeric, cocoa powder and black pepper. I soon found out that the berries were making my blood sugar, and consequently my mental acuity, fluctuate beginning by 10 am. I would get home ravenous, starving. My hunger pains were excruciating, and any piece of mind fasting could bring was eclipsed by the urgent need to eat.

Once I eliminated the berries-- I use a banana instead-- my mental acuity remained unaffected. I would get home pleased at the smoothness of the fast, and not be frantic to end it. Eliminating the almond butter and coconut oil-- caloric bombs-- and substituting with peanut protein powder or hemp seeds-- also helped reduce the... sluggish.. gut.

In September 2015, the Dalai Lama was admitted to the Mayo Clinic for check ups. He was forced to cancel his US appearances for October. Concerned about his health and well-being, I decided that the discipline of fasting could be channeled like a prayer for his long life. It has been this Fourteenth Dalai Lama more than anyone else alive today who is responsible for guiding me through my life work in caring for the seriously ill, dying and bereaved. Fasting has now become my weekly offering of gratitude and health for this great being.

There are other observations. In the first two months of fasting, I became aware that my satiety signal was getting much stronger. I was eating less than before all week, and feeling quite content and nourished. I also became aware though of areas in my life where excess still reigned, especially on fasting days. For me, this was in the realm of social media. I would check social media several times a day, often just to avoid feeling hungry. This seemed to contradict everything I try and do, and recommend, through the mindfulness practice, to move into areas of discomfort and difficulty and breathe into them, not distract myself from them.

So, I decided to add social media to the list of fasting options. No Facebook, Twitter or Instagram. None of it. Just an occasional retweet for my employer's tweets, which they have asked me to do. But no other checking or posting.

The result? A gradual overall reduction in my participation in social media. Fewer tweets and Facebook updates, but less frivolous ones. They seem to be more relevant, and hopefully, more helpful.

So the results so far, after nearly 9 months of fasting on liquids only once a week?

It's tough. But the world can be an unpredictable place, and life can be disrupted by suffering any day. We need self-discipline to make healthy choices and to withstand the inherent and inevitable discomfort of life. As a psychologist at a cancer center, I am exposed every day to people experiencing the extremes of human existence-- death, grief and rebirth. I need to have all of my resources accessible, and to be as healthy as I can be. That requires discipline and mindfulness. Compassion requires discipline and mindfulness. Fasting is a great way to do that, and as a bonus you can dedicate the merits of your self-discipline for the health and welfare of those who inspire you.

Wednesday, May 27, 2015

Thoughts on compassionate health care

Recently, I heard a fantastic story on the radio about how one of the leading medical schools in the country is allowing a growing percentage of humanities majors into medical school. My first reaction was one of gratitude that a training facility for medical and health care professionals sees the potential of well rounded human beings being even better health care practitioners. My second reaction was self-reflection.

I didn't go to medical school. I always wanted to be a psychologist. For 17 years now, I've been living out my dream of doing just that, but in the setting of cancer care. I've probably seen many thousands of people, treated hundreds of family members for grief. I didn't set out to do this.

And I learned very little of how to do it in my formal graduate education.

As an undergraduate, I had the incredible luck of attending one of the most eccentric colleges in the country, the University of California at Santa Cruz. Set high above the Pacific Ocean on the edge of a redwood forest, it was an idyllic locale for inner and outer exploration. I planned on being a psychology major. Unfortunately, it seemed at least half the student body had the same idea. The pre-requisite classes were just too crowded. I couldn't get in. It seemed that if I wanted to do the psychology major route, it would probably require an extra year.

Back then, I was allowed to do an independent major. So I put together my own curriculum and syllabus and major requirements over the course of an angst filled weekend during my sophomore year. I recruited three of some of my favorite faculty members to serve on the committee. The major-- I called it Psychology of Self-- was a mix of explorations into transcultural identity, mysticism and hermeneutics. Most of my classes were one-on-one, a professor, assigned study text and me meeting weekly. One particular highlight was a meticulous study of Exodus 3:1 using Martin Buber's I and Thou as a sort of decoder ring.

Every week for 9 weeks, my professor and I studied the scriptural text word by word using the transcending flow of I and Thou to understand the interaction and interplay of human and divine. We travelled through a spiritual landscape populated by personal experience and individualized quest for meaning. Weeks were spent contemplating "Moses, take off thy sandals from thy feet, for the ground upon which you stand is holy ground." Where did the voice come from? Was it referring to only that spot on the mountain? What is holy? What is holy ground?

I can't convey all that went on in those conversations. The point of it was that each of us has to answer those questions for ourselves.

As I sit with a patient who is newly diagnosed with a curable disease, or told they only have a short time to live, or with a family member whose only companion now is the absence of a loved one, I realize so much of what I do is still in that tiny room, sipping mint tea with a scholar of the Hebrew holy books, contemplating the mysteries of the spiritual and the mundane.

Neither of us knew in those conversations that it would lead to comfort for the sick and dying in a most literal sense 25 years later. None of this was done with foresight. Yet without the freedom to let my mind and spirit wander in that misty forest campus, I don't think I could do much of what I do today half as well as I hope I am doing.

I realize that in order to provide compassionate care to those who need a companion to be present as the mysteries of suffering, illness, pain and death unfold, the companion needs to travel some of this territory on their own. This isn't taught in graduate training programs nor in medical schools. It's the realm of the humanities. Supposedly unpopular and unlucrative majors like English literature, philosophy, religious studies may offer keys to unlocking our health care system. They offer the path forward towards breathing humanity into the health care system, of restoring medical care into a healing art and allowing healers to have genuine, intimate contact with patients.

And a way for healers to heal themselves from the burdens of care delivery.

Clearly, there is no substitute for competent, evidence-based care. But there is also no substitute for a curious, compassionate person providing that care who has spent as much of  their lives living as well as studying.