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In truth, saying no to treatment can be a courageous act that frees up time and energy for all sorts of meaningful moments that might otherwise be spent distracted in a chemotherapy room, emergency department, or intensive care unit.
Experts may know more about your illness, but you know best who you are and how you want to live until you die. This is a relationship, not a chain of command with you playing
Who do you want to include in the communication loop and who do you not?
A fruitful way to use the internet is for educating yourself broadly, to prompt questions for further discussion with your doctor.
1. What is this treatment meant to do? Is it going to cure me? Make me live longer? Make me feel better? 2. What side effects can I expect from this treatment? How long will they last? What can be done about them? 3. What does “success” look like for this treatment? Is there any risk to trying it? Can I stop it once I’ve started? 4. How long until I know if the treatment is working? 5. What are the alternatives? What happens if I don’t do this? 6. Should I consider hospice? If not now, when? Would you be surprised if I died from this illness within a year?
Imagine that: patients protecting the person who is there to protect them. But hiding your true needs from your doctor only makes it harder for you to get the doctor’s help.
When you think about the end of your life, are you afraid? Are you sad? Curious? Confused? Maybe you’re numb or quickly distracted. You may try to talk yourself out of your feelings, as though the problem is merely an attitude issue; you may get down on yourself for feeling the way you do. Whatever you’re feeling, there’s no shame in any of it. These feelings, at root, are both protective and instructive; they will tell you a lot about yourself, about what’s important to you, where you are vulnerable, and what needs attention. Death is a big deal, and the body knows it.
Our hope is to help you to find a way to be engaged—interested, even—in how you feel about death, rather than cowed or too terrified to face it. If you can see your feelings for what they are, you are less likely to be whipped around by them (and less likely to whip others around with them). Engaged, you’re more likely to feel safe and make better decisions for yourself.
Whatever you call it, mortal fear is in a class by itself because its source is inside us. It’s not easy to pin down and deal with in the same way you would a phobia of some external threat like snakes or heights. Unlike snakes or heights, the object of this fear is inevitable: death is a little time bomb planted inside us, but none of us gets to know when, precisely, it will go off.
Coming to terms with death means coming to terms with time—and not just with the fact that the future is suddenly constricted. Yes, there is that fear of missing out, but there is also a fear associated with looking back in time. That fear has a name: regret, and what a gnarly beast it can be. You begin to realize the impossibility of correcting the past, just as you realize you won’t get to achieve every one of your dreams.
One way or another, mortal fear becomes connected to the fear of not living your life while you have it. This gets at both the problem and the solution: all our new limitations, both forward and backward, can bring into focus what is still possible.
There is important stuff wrapped up in this fear; namely, the search for meaning, one of the greatest compulsions of all. Who am I? What am I doing? Is there a higher purpose to all this? Does my life mean anything? Why me?
When your loved one describes to you their position on this or that, you might ask: “Why do you think that?” Or, pushing further, “Do you think there’s anything we’re missing here?” Or, “Is that way of seeing things serving you well?” That last question gets at the central gist—is the attitude or stance actually helping them? Or is it getting in the way? The judgment is theirs to make, but you, too, will get a feel.
We grieve for the losses we now realize are coming as well as for the loss of innocence that happens at the moment illness is diagnosed. We grieve in anticipation of death.
And we grieve all sorts of losses, not just the loss of life: loss of freedom, independence, roles, things, ideas, relationships, and bodily functions. Dealing with any diagnosis or ongoing illness or disability, in ourselves or those we care about, means facing a cascade of losses.
Pamela and John were fortunate to be able to work through their grief together. By the time of John’s death it was a familiar companion and Pamela was able to enter her official mourning with nothing but warm, deep sadness and a tinge of pride. We called it “clean sorrow.”
Inspiration; purpose: these things are as essential as oxygen. Find reasons to live a little longer and you just might.
“Take your breaks where you find them.” I’ve used this phrase with patients (and myself) a zillion times. Funny how we’ll endure all sorts of miseries, but won’t let ourselves celebrate the upshots.
prayer affords you an intimate space in which to articulate how you feel and what it is you dare to hope for.
Gratitude is really a by-product of appreciation. So start by taking life in. It can come during grace at the dinner table, or as a bedtime ritual.
Love is the greatest force we know. It can answer any question. In a way, this entire book is about love. Love may be immense, but it often shows up in subtle and unexpected ways.
his hand, embracing his face, and saying good-bye. Gestures of love don’t have to be grand and cinematic. They don’t have to happen in a sudden burst of tears at the bedside as the credits roll. Often love builds, just as it did at the VA hospital, one load of laundry at a time.
When you’re mindful, you’re watching your thoughts as they come or go, not necessarily clinging to them.
It can be anything that pulls your attention to the now, the life that’s still here.
Falling apart well is a skill that can be learned.
The phrase “What I wouldn’t give for a” is usually about a desire for a sensation. Want to feel alive for as long as you are? Pay attention to your senses.
We are an incredibly adaptive species. Go further if you like: use that inborn impulse to write a poem, plant a garden, cook a meal, sing a song, paint a mural. Creation can be wholly internal, too. Just imagining something can be potent.
Prepare yourself. Start with a gut check: When you tell people, is there some response you’re after? Do you want advice? Do you want the listener to take action? Do you want them to simply listen? How about a hug? You may end up blurting it out—even to people you barely know—and that’s okay, too.
Doctors call this a “warning shot,” such as “I got the test results back today.” Or “I’ve got some hard news to share.”
Intellectualizing keeps emotions at a distance, which is ultimately only isolating. So break through, with hankies at the ready, and acknowledge the feelings in the room: with your eyes, or your own tears, or a comment such as “I’m afraid” or “This hurts” or “I’m numb.” Establishing this kind of emotional safety between you and the other person is probably the single most important thing you can do.
Knowing that, it’s best to have a good grip on what your illness will require of you, along with a plan, before you broach the news with your boss; that way you and your supervisor can come up with a strategy for how your work will be covered in advance, instead of just leaving her to figure things out after the twentieth phone call that you have to miss another meeting. Here’s some advice:
Holding a little silence, even a few seconds, can be transformative. It can feel hard to stay in it, but silence conveys all sorts of kindness that words cannot, and it also allows room for deeper emotions—perhaps in the form of better words or tears or a howl—to rise to the surface
It’s best to keep a narrower focus in asking questions. Ask how she is today or this morning rather than how she is in general
Ask if he just wants company. There’s no need for conversation. Maybe take in a movie together. Physical presence can be comforting in and of itself
Try just coming out and saying “I know it’s hard to talk about what’s going on, but it’s okay to ask me about it. I still want to see you.”
“Attention is the purest and rarest form of generosity.” No matter what words are spoken, being there is the real balm.
