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.
Thursday, June 2, 2016
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.
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.
Labels:
#breastcancer,
#cancer,
#chemobrain,
#disability,
#survivor,
#survivorship
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.
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.
Labels:
#Buddhism,
#compassion,
#healthcare,
#hospice,
#medicine,
#meditation,
#palliativecare
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