Category Archives: Caregivers

Barbara Ehrenreich and Positive Thinking

Sep 1, 2014 Cancer, Caregivers, Keeping Your Chin Up, Survivorship Leave a Comment

Wednesday, April 14, 2010

I wanted to share this interview with Jon Stewart and Barbara Ehrenreich, whose new book “Bright-Sided” discusses the dark side of positive thinking: http://www.thedailyshow.com/watch/wed-october-14-2009/barbara-ehrenreich

Many times, when you are coping with an unexpected disappointment or particularly challenging time in your life (like cancer), people (even people you love) try to help you feel better by suggesting you just “think positive” and “don’t dwell on the negative.” I talk about this in Chapter Five of my book, Recipe For Lemonade.

I can’t tell you how annoying this is for someone going through cancer.

Now, there is a difference between a heartfelt, “It won’t always be like this; hang in there,” (which I love) and a somewhat self-righteous, The Secret/Law Of Attraction-motivated attitude that implies a person can bring misfortune on themselves deliberately through a combination of their thoughts and the science (or magic) of quantum physics.

I myself have been buoyed by hugs, e-mails with supportive, encouraging messages, and belly laughs brought on by joking coworkers. Whether these things have changed my white blood cell counts remains to be seen, but I do know that they have given me a reason to get up in the morning – something to keep living for – which is very motivating when you’re fighting for your life. To put it frankly, these things can be the difference between wanting to live and wanting to die. What they cannot do, however, is cure cancer.

We don’t want to believe this, of course. We want saving someone’s life to be as simple as the power of prayer. We don’t want to believe that sometimes, people die and there is nothing you can do to stop it. That’s a terrible world to live in, isn’t it? A world where someone you love, no matter how much you love them, or how much they love you, can be beaten by a lack of T-cells. And yet, this is the world we live in, and no amount of happy thoughts can change it. Why is it we can believe positive thinking can cure cancer, but it can’t cure AIDS? Why do scores of people bash chemotherapy when it has saved millions of lives? I know it’s not perfect, but it’s ALL WE’VE GOT. If you have a better solution, for God’s sake, get some medical training and go prove it at the Mayo Clinic, because we could certainly use an alternative. But don’t sit there when you haven’t had a doctor tell you that you could die if you don’t do what they say, and then suggest I meditate on rainbows to shrink my tumor.

When people I love tell me not to be so negative (i.e., realistic) about cancer and the ramifications of having had it, I wish that, for just a moment, they could be in my shoes. That, for just a moment, they could feel the fainting heart and nauseous stomach that comes with a cancer diagnosis. The sinking feeling that accompanies the realization that the life you thought lay before you – the one you were working towards, hanging in there for, and getting up in the morning for – has been utterly wiped out, like Nagasaki, in a split second. I wish they could know what it feels like to go through week after week of treatment – each chemo drip reaffirming the unavailability and inaccessibility of that future – and know how hard it is to keep getting up in the morning, despite your uncertainty about the future. But mostly, I wish they could feel the way I feel when someone suggests in the face of all this that staying positive can not only cure cancer, but keep it away. Are you fucking kidding me? I want to say. You do four rounds of AC and twelve rounds of Taxol and tell me how to stay positive when I look like Uncle Fester and my future looks like Hiroshima (circa 1946). It is taking everything I have in me just to keep waking up in the morning, I want to say.

Now, all that being said, there is a way to come out of cancer without hating your life and the people who have loved you through it.

The first thing you must do is recognize that there is a pro and a con to nearly everything. Sometimes, the only pro is, “this will not last forever,” and that is what you must hang onto if you want to make it to the other side of disaster. Sometimes, the cons build up so much that all you can do is curl up in a ball and cry. When this happens, cry. Cry, cry, cry. Cry till your eyes are swollen shut. Stay away from drugs, alcohol, and anything else that’s self-destructive, and curl up in bed until you fall asleep. When you wake up, that crappy day will be over and done and a new one will have started. When you get out of bed, on this new day, don’t think of it as one more crappy day to get through – think of it as one day closer to the end of a crappy week, a crappy month, a crappy year. It won’t stay crappy forever – sooner or later, things WILL get better. Your job is to make it to the end of the crap. Trust me, it will come.

Whenever the crap breaks, take a breath. Entertain the possibility that, even if this amazing life you were working so hard for and imagining every day is not to be, that there might be some alternate, happier (or just-as-happy) future available to you now. This is all you have to do – drive the wedge into your crap-centric thinking – to jump the track. Find the things in your life you can be content with, even happy about, and you will feel the crushing despair of impossibility lift, if only slightly.

This is the path to rebuilding optimism – not faking it till you make it, not pasting on a smile when you feel like giving up, but seeking out the reasons to keep living, keep hoping, keep dreaming. Giving yourself permission to imagine new happinesses and forgiving yourself for having a bad day, or a bad month, or a bad year. We only blame ourselves for misery because we don’t want to live in a world where anyone and anything can fall apart, at any time, for no good reason. We have to believe that people bring it on themselves, otherwise we’re all vulnerable. When someone tells you to “stay positive” instead of worrying about a recurrence, they’re either afraid of their own mortality, or grasping at straws because they don’t want to imagine a world without you. Chances are, they have no idea what you’re going through, so unless they’re being a pushy jerk, cut them some slack.

Especially if they bought you a pink bear.

The Top 3 Things Cancer Patients Can’t Stand Hearing From Their Loved Ones

Aug 17, 2014 Cancer, Caregivers, Family, New, Pre-Recovery Leave a Comment

Wednesday, June 24, 2009

Attention all caregivers! Please read on if you *really* want to be there for someone you love who’s fighting cancer.

The Top 3 Things Cancer Patients Can’t Stand Hearing From Their Loved Ones

1. That we somehow caused our cancer. This includes reminding us of “bad” habits that we have or haven’t given up, or implying, via “The Secret” mythology, that we somehow attracted it, or, via something like Catholicism, that cancer is some kind of punishment for our sins.

2. That there is more we can be doing to fight our cancer. Once you have gone through surgery, chemo, hair loss, and radiation, then you can gauge your threshold for dealing and suggest something more we can do. On second thought, don’t even bother then. We don’t want to hear it.

3. What we should do post-treatment to keep our cancer from coming back. Please don’t tell us how to keep our cancer from coming back. Tell the American Medical Association, or the National Institutes of Health, or the Centers For Disease Control. Rest assured, they’re dying to know so they can monetize your miracle advice.

Why do people we love tell us these things? Because they love us, and they can’t bear the thought of losing us. That, and they really do think, perhaps because they’re not the one with a chest port, that we can have some measure of control over our cancer. Or, rather, that they can have some measure of control over our cancer.

Try as we might to convince ourselves that life is predictable and logical, the fact is, we live in a world of complete uncertainty. As such, our first response to the unexpected is to seek out logical, rational conclusions based in causality. Why? Because we need to believe that things happen for a reason, and if we reduce cancer to an effect with a cause, then, in a twisted way, it gives us the illusion of having power over it. If I caused my cancer, then I can cure it! Even better, not only can I cure it; I can keep it from coming back! See how that works?

This is the height of insanity, and trying to convince someone fighting cancer of it, while it might give you comfort, is a backhanded compliment at best, and a hurtful insult at worst. Most people with cancer have already struggled with staying positive in the face of relentless unpredictability. Give them some credit for STILL BEING ALIVE and stop sharing your opinion on how they can manage, survive, or prevent their disease better.

My Sister, aka General Patton

Aug 17, 2014 Cancer, Caregivers, Family, Pre-Recovery , , , Leave a Comment

Monday, May 25, 2009

I often say that my sister “is not a nurturer.” If you need warm and fuzzy, Rachel is probably not your gal. In fact, I once went to her in need of comfort and had her say, rather helplessly, “I don’t know what you want me to do.”

Where Rachel excels, though, is getting things done. If Cameron Diaz and General Patton had a child, it would be my sister – full of boundless energy, huge grins, and ruthless, take-no-prisoners self-determination. This is why, inevitably, my “she’s not a nurturer” statement is quickly followed by, “but if we ever go to war, I want her in charge!”

Faced with prepping my dream house for sale – the house I thought I would get married in, raise my children in, and grow old in – I was immobilized. I had just started Adriamycin and Cytoxan – two of the least fun chemo drugs – and my heart was breaking watching my dreams sink to the bottom of the Pacific. My realtor told me I needed to “de-clutter” the house as soon as possible, and all I could see when I looked around were the hundreds of dollars I had spent shipping hundreds of dollars of knick-knacks that would inevitably end up on a garage sale table, at the local Salvation Army, or packed in bubble wrap for storage until I could afford to ship them back to the mainland. I was overwhelmed with grief, and didn’t know how I was going to do it all.

Thankfully, Patton arrived, and with her, order and comfort. Not the comfort we want when we’re wounded – the Florence Nightingale-ish, soothing kind of comfort – but the structured, decisive comfort that is the other side of mothering. My sister took charge, “Rachel-izing” the house in barely a day, saving me the heartache of de-cluttering it myself. It was the first time, or maybe just the most significant time, that she was able to do something for me, and I was able to appreciate what she did. It sounds so simple, but how many times do people with different definitions of “support” find themselves unfulfilled? Had I insisted that the only way she could make me feel better was the way I made others feel better, I would have missed out on the gift she gave me.

We forget, when we’re sick, that caregivers often feel just as helpless as we do in the face of illness. They are not (usually) doctors or nurses, and can only watch lamely while someone they love suffers. I am reminded of rescue dogs after 9/11, who kept finding body after body, growing more and more discouraged, until officers planted faux “victims” in the rubble for them to find, to keep their spirits up. My sister was listless and depressed watching me go through chemo until I asked her to please do this one thing for me because I can’t do it without your help. I literally threw her a bone, and it allowed her to feel empowered in the face of my cancer.

When someone loves you, and sees you in a weakened state, all they want to do is help you feel strong again. Never getting the chance to help can be discouraging and depressing for a caregiver. Even if you have to muster up the last of the strength you have, find a way that someone who wants to help you can.

The most wonderful thing my sister has ever done for me (and, truth be told, she is a very loving sister who has done lots of wonderful things for me) was to throw me a surprise Welcome Home party after I moved back from Kaua’i. For a week, she had been all over me about keeping the house clean, and my friend Anne had come up to visit another friend further north. I hadn’t seen many people since coming home, as I was self-conscious about my appearance, my unemployment, and my lack of confidence in my future. Who wants to have lunch with a bald, broke girl who surfs the Internet all day? Turns out, a lot of people. Rachel’s friend Pynkee had suggested a surprise party to welcome me home, and my sister, in true Patton fashion, mounted a covert op with military precision. She contacted my friends through my Facebook account and old Evites, and even hid the party food at a friend’s house up the street! When Anne and I came back from breakfast, I was welcomed by dozens of friends and family members, some of whom I hadn’t seen in a year, others who drove an hour or more just to be there and show they cared. At a time when I felt so alone and in need of comfort, it was my sister – General Patton – who called in the troops for me, and made me feel supported and loved.

Everyone has a role to play in your journey to healing. Remember that not everyone is capable of giving in the same way (some people offer shoulders to cry on; others make Bundt cakes), and many may not feel comfortable giving without your permission. We’re not all psychic either, so if you notice a friend acting like a depressed rescue dog in your presence, find one way that they can be of service to you during your time of need, even if it’s picking up your mail or bringing you a Starbucks. Don’t dismiss your needs (and yourself) because you “don’t want to be a burden” to others – those “others” may be waiting for an opportunity to lighten your load, if only you’d let them! Giving someone a way to help makes them feel less helpless in the face of your struggles.

And, most importantly, if someone you love says, “I don’t know what you want me to do,” cut them a little slack, or better yet, throw them a bone. Not everyone can be Florence Nightingale. Sometimes, you don’t know you need a Patton until you ask.