What Helps, What Hurts, What Heals

2008-09-21T12:05:00.000-07:00

Originally published on CarePages, 9.10.08

"I need to be touched."

Although every day the members of this community touch my heart, lately I’ve been yearning for another kind of touch as well, the peerless gift of physical connection. I’ve also wanted to write about this, but my thoughts hadn’t gelled until last night, when I caught the tail end of a commercial.

“It’s like getting hugged from the inside!” boomed the announcer, hawking a large sandwich of meatballs, marinara, and mozzarella that packs 1000 calories, 45 grams of fat, and almost 3000 mg of sodium.

No matter that this steaming sub would eat up more than my allotted Weight Watchers points for one day. More important, it’s a sad reminder that so many of us so often seek solace in a sandwich instead of what we really need. As the popularity of the “Free Hugs” video on YouTube shows, having been viewed more than 30 million times in the past two years, we all need to be held, hugged, rocked in another’s arms.

Touch is especially vital when we’re suffering from cancer or are otherwise traumatized, and in fact one of the things that people with cancer want you to know from my book is, “I need to be touched” (see p. 230, “The Lists”.) No artery-clogging sandwich or even freshly baked Toll House cookie can begin to take the place of a warm hug given with pure love.

One of the beautiful things that can come of cancer – and I am not one to casually call cancer a “gift” or a “blessing,” because a gift is something you’d give someone and a blessing is a gift from God - is the love that flows, like a spigot of kindness that opens to release a rushing stream of generosity of spirit. But even though, when I had cancer, I loved and relished psychic hugs, nothing felt quite so good as the real thing.

Many of us are leery of touching, maybe because touch has become so sexualized in this culture; teachers aren’t even supposed to touch young students for whom hugs and warm fuzzies are so vital. And so many people who are single or divorced feel deprived of touch, and can’t afford a weekly or even monthly massage. So they seek hugs on the inside. And yet such “hugs” never fill us up.

Could the epidemic of obesity in this nation have anything to do with being deprived of physical contact? I’d like to share a story about that with you that involves my mom, but that’s another subject for another time.

For now, I just want to remind you how healing touch can be, and urge you to offer to hold someone who’s ill, or if you’re ill yourself, to ask a friend or loved one for a hug.

And I’d like to share with you a touching (pun intended) video I found when a certain song came to mind. May it inspire you to reach out and touch someone in the same way.

With love,
Lori
LoriHope.com

Calling a spade “a bloody shovel"

2008-09-06T10:31:00.000-07:00

Although the groundbreaking Stand Up To Cancer TV show was both compelling and entertaining enough to keep me watching even when words and pictures of children and adults wrenched open my heart, and although it raised many millions of dollars for Dream Team researchers, and although I am not criticizing the show in any way, I can not in good conscience refrain from talking about something besides standing up to cancer that brought me to my feet too many times.

It’s two simple words that upset me every time I hear them: “Touched by.” As in “touched by cancer.” It sounds euphemistic and to me does a disservice, because although softening it may make cancer easier to face for those not directly impacted, “touched by” can also impede compassion by inadequately describing the blow it delivers.

Maybe if you’re just a distant acquaintance, colleague, or relative of someone with cancer, you could say you’ve been “touched by cancer.”

But those of us who’ve heard the words “You have cancer,” and those of us who love and care for someone who has, will tell you that it does anything but touch. Although the many definitions of “touch” include “come into contact with,” or “have an effect upon,” the word itself connotes something soft, with synonyms such as “caress” and “fondle.”

No, cancer doesn’t touch. It punches. Cuts. Stabs. Slaps. KO’s. Blindsides. Jolts. Traumatizes. Even devastates.

Granted, for many of us it’s not literally devastating, but it feels like it when we first learn it’s invaded our body. Even when we’re told it’s early stage or a “good” cancer, when we hear the words, “You have cancer,” everything else goes away.

That was articulated powerfully in the special last night, but the words we use to refer to the disease, such as “touched by” do matter. As I and hundreds of others have said through the stories in “Help Me Live: 20 things people with cancer want you to know” and my other writing, words can either help and heal or heap cruel insult onto injury. Words such as “You have to think positively!” or “Did you smoke?”or “You poor thing” can cut deep, while “This is so unfair,” “I’m here to listen whenever you feel like talking” or simply “I love you” can soothe like aloe on burn.

Am I nitpicking? Though I have been called too sensitive, I do believe that words can subtly – or not so subtly - influence our thinking. Euphemisms can sugarcoat, and again, prevent those who haven’t been impacted by cancer truly understand it and therefore practice compassion.

Yes, cancer is scary. The word itself still makes some people run like they’ve seen a Grizzly, and we don’t want to frighten people even more by describing too much the terror of the disease. Yet if we describe the psychological and emotional impact while sharing the hope for the cure and all the stories of triumph, we can appeal to the higher part of the human being, the part that wants to help and heal.

That’s what Stand Up To Cancer did. My pure and immeasurable thanks to all the stars, advocates, and citizens who made this groundbreaking collaborative event a reality and marked, as they say, the beginning of the end of cancer.

And again I’m not being critical of the show itself. I’m just saying that we need to call a spade a spade, or as the Oxford English Dictionary says, “A spade a bloody shovel.”

With love and always hope,
Lori
www.LoriHope.com
This post was originally published on CarePages.com

"What Not to Say to Someone Who Has Cancer"

2008-08-15T09:41:00.000-07:00

If you have five minutes, a sense of humor about cancer and, if you’re a friend of someone with cancer, thick-ish skin, I highly recommend "What Not to Say to Someone Who Has Cancer," a video by Holly, a 37 year old cancer survivor, mother of two, and self-described “Domestic Goddess” who loves to hang out with her kids and “be crazy.”

“She could be a standup comic,” I thought the first time I watched her litany about what not to say to someone with cancer. She repeats in so many words but with fun irreverence what those in my book said they want others to know. Though I tried hard to be gentle in “Help Me Live…”, knowing that folks so want to help us but are often simply clueless and need some loving guidance, I love Holly’s straight talk, made more palatable by her sweet smile, twinkly eyes, and underlying kindness.

Holly also provides some powerful tips about what truly helps those of us who've heard the words, "You have cancer."

Do you have other things to say or not to say to people with cancer? And what about you caregivers out there? I’ll probably incorporate some of Holly’s material into a talk I’m giving at a camp for cancer survivors next month and would love to include more comical statements and stories – because, after all, if we can't laugh about all this, how can we expect to handle folks with “foot in mouth disease”?!

I hope you enjoy the video as much as I did, and please forward to those who might benefit. Though don't we wish we could send it anonymously...

This post was originally published on CarePages.com. See what helps. what hurts. what heals.

"How aaaaaaare you?"

2008-04-01T22:57:00.000-07:00

Recently at a party, I ran into an old friend who I was delighted to see — until, after a quick embrace, she asked the dreaded question: "How arrrrrrrre you?" In other words, "Is your cancer still in remission?"

I chose to deflect the question and ignore the subtext, because I didn't want to discuss my health, particularly since I'd recently had another cancer scare and wanted to stay as far from Cancerland as possible, at least for the evening.

So I cheerfully replied, "I'm doing great, just busy," and then mentioned a few of the projects I'd been working on.

But she didn't let it drop. "No, I mean, how's your health?"

"I'm fine, as far as I know," which I always say, since I can never really know that I'm completely cancer-free.

What I wanted to say was, "Thank you for caring, and I know you mean well, but sometimes I just want to forget about cancer, because it still scares me. I'd really prefer it if you'd let me bring up the subject."

I wanted to say, "I don't know if I'm cured, and bringing up my health can bring me down" is one of the '20 Things People with Cancer Want You to Know' from my book."

But of course I said nothing of the sort, and let it go, quickly changing the subject. I didn't want to risk hurting her. And to be honest, I didn't want to risk damaging our friendship. I'm not proud of that, and in fact feel upset with myself. Because I didn't say anything, my friend will likely go on to ask other cancer survivors about their health. Some won't mind, but others will react like I did. I could have helped prevent that by being honest with her.

As I discuss in my book, it's especially difficult to be assertive when you're rendered more vulnerable by the trauma of cancer. That's why I wrote the book – to speak for those unwilling or unable to speak for themselves during probably the most trying time of their lives. But it's been almost six years since my diagnosis, so I have no excuse.

This last incident – and as regular readers know, this happens frequently, not just to me but to most cancer survivors – is the last one I'll let go. If all of us long-term survivors were honest about our feelings, imagine the impact we could have.
http://www.blogger.com/img/gl.link.gif
Being honest and compassionate are not mutually exclusive. I've been honest like that in the past – once when someone told me a cancer horror story that scared the daylights out of me. (See the last part of an article at http://cms.carepages.com/CarePages/en/ArticlesTips/HelpfulTips/what_to_say.html) What I did to harness my strength was take a deep breath, drawing in all the love I could. That enabled me to speak with compassion, not anger.

It felt wonderful to do so, and I think I really did some good. That's the feeling I'll focus on next time someone asks, "How aaaaarre you?" And after I respond, kindly and lovingly, I'll ask if I can give the questioner a hug to show that everything's okay.

Lori
www.LoriHope.com
author of "Help Me Live: 20 Things People with Cancer Want You to Know"

- originally published on CarePages.com

Written on Valentines Day

2008-02-16T10:11:00.000-08:00

Love, Love, Love...

All you need is….
What the world needs now is…
Where is the…?

Google "love" and more than 2 billion citations come up. It's what we all want, need, love to feel and love to give. We love love!

The last couple of days that's been more evident than ever. I've seen red roses, red carnations, and red heart-shaped mylar balloons the size of giant watermelons in the hands of men and women on street corners, hoping to sell Valentine's Day love tokens to motorists on their way home from work. I've also seen stuffed teddy bears of all hues, many holding balloons or hugging stuffed mini-hearts, trying to charm me into taking them home. Some are small, others are almost big as children. I wonder what they cost.

As I was driving by one of the vendors this morning, I realized how beloved I feel. Not because of the flowers and teddy bears I've been given in my life, but because of the gifts of time and energy -- that which is most precious and irreplaceable.

I remembered a present my friend, Asma, gave me, one that I will never forget. A few days before Christmas, struck by the beauty of her new necklace, I complimented her profusely on her great taste. A shiny crimson and black stone hung from what looked like twenty hair-thin strands of silver and black. Her earrings matched. I asked her where she'd bought the set, and she said Chico's – a store I had recently introduced her to.

Then she asked, "Why don't you take it? I'd love for you to have it."

"No way," I answered. "I'll go find something like it myself, if you don't mind us being twins!"

About a week later Asma came over to my house and handed me a gift bag. "Merry Christmas!" she smiled, her black eyes and white teeth sparkling.

I opened the gift and then opened my mouth to speak. But I could find no words. I was holding in my hands the necklace and earrings.

"Don't even think about not accepting this," she said. "I want you to have it. You love it so much. And red's your color!"

Gifts like that – gifts from the heart, giving someone the shirt off your back or the necklace off your neck – are more meaningful than anything you can purchase, because they involve acts of true sharing, true sacrifice, true love.

Not that I don't like flowers or teddy bears, mind you! But giving someone something that's yours, something of yourself, something you can't replace, such as time, means more than anything.

It helps me to remember that. Visiting a sick friend, no matter how busy you are, trumps sending an expensive gift.

Love helps. Love heals. It's the greatest gift of all, whether you're giving or getting it.

Happy Valentine's Day!

With love,
Lori

2008-01-31T13:51:00.000-08:00

A Story of Unconscious Scanxiety and Hope

In the past week and a half, my car window was shattered and my desktop computer and vacuum cleaner conked out. I was understandably stressed as I dealt with repairs, but disproportionately anxious, angry, and touchy, even snapping at my husband and needlessly catastrophizing.

"What's going on?" I wondered for several days. "It isn't cancer, after all."

But then I realized that it could be. I'm getting my annual mammogram next week, which could show. . . I don't want to even go there. But I must. I'm suffering from scanxiety – a term born of the blogosphere that describes the feeling that members of the Cancer Club know all too well.

Ironically, I'm in the midst of writing an article about post-treatment anxiety, including scanxiety, for Heal magazine, a great new publication for cancer survivors that includes information about everything from finances to relationships to designing home environments that invoke past feelings of care and comfort.

How could I have missed scanxiety in myself? It's partly because I'd managed to put the mammogram out of my conscious mind, and had become more focused on things as relatively trivial as a broken computer or car window. What was really breaking was my heart.

Once I started thinking about this, I realized that just a few weeks ago I was worried sick about the health of three people I love – my father, brother, and neighbor up the street - all of whom recently underwent potentially dangerous medical procedures. The relief of knowing they all sailed through safely buoyed me, but then I sunk myself, knowing deep down that I might have to re-enter perilous waters.

Maybe I'm reading too much into all this. Fact is, health is everything, and when you fear recurrence, especially around check-up and medical test time, you are rendered much more sensitive and vulnerable. So a broken window, even a broken fingernail, can swell in importance.

What's most important is that realize this so you can prepare for it. I'll be writing about how to prepare and cope with scanxiety and other post-cancer related fears in my Heal article, and will give you a heads-up when it's out.

In the meantime, as always, I'd love to hear your thoughts about this.

And, as always, thank you for caring enough to be here.

Always hope,
Lori
http://www. http://www.redroom.com/author/lori-hope
www.lorihope.com

2008-01-21T17:23:00.000-08:00

I just received an email from a cancer survivor who read Help Me Live:
20 Things People with Cancer Want You to Know. His message almost
makes it worth having had cancer, because it seems to be truly helping
people.

"I want to give your book to every oncologist on earth, for themselves
and those that love us," he wrote. "You've given me many thoughts that
may help me forgive those that have hurt me. Unfortunately my total
memory was not wiped out with the chemo."

How I wish I could get Help Me Live... into the hands of health care
providers who should be helping their patients not just recover physically,
but heal emotionally. Or at least not get in the way of healing by speaking
or acting insensitively, and inadvertently adding insult to already
massive injury.

Though certainly not all doctors, nurses, and techs need to read it -- we
all know of many who are deeply compassionate and emotionally
supportive -- most of us have wanted to voice our feelings and ask the
members of our treatment team to open their hearts as well as their
minds to us.

The reason I continue to write and speak publicly about compassionate
communication, and try to get the message out through popular media
and virtual communities, is that I want to reach health care professionals
as well as friends, loved ones, and colleagues of people with cancer.

There's someone else trying to do the same thing: Julie Rosen, the executive
director of The Kenneth B. Schwartz Center, a nonprofit dedicated to
strengthening the relationship between patients and medical caregivers.
Lucky for us, Julie has a CaringLife Blog at CarePages.com, "bedsidemanner" -
and I suggest you go there for a heaping dose of hope and healing.

I plan to write more about the center and how its accomplishing its mission in a
future post, but for now, if you need something to lift your spirits, go to http://www.carepages.com/ServeCarePage?cpn=bedsidemanner&seed=150387
&ClusterNodeID=jb01&tlcx1=default

Thank you for caring enough to be here!

Always hope,
Lori
Author of Help Me Live: 20 Things People with Cancer Want You to Know
http://www.LoriHope.com
http://www.redroom.com/author/lori-hope

Edit Delete

"I love you"

2008-01-10T11:09:00.000-08:00

When I was first diagnosed with cancer, it was as if every shade of green -- sea-green to pea-green to tree-green – drained to gray. The fragrance of flowers failed to comfort me. The summer sun no longer warmed me.

But one sentence melted my heart, frozen with fear and dread.

"Hi, Lori. I'm so sorry to hear about what's going on with you," said my friend and colleague, Mal, on my voice mail. "I just want you to know that I love you." Those last three words, gently uttered with sincerity and compassion, opened my eyes to green, my nose to blossoms, and my heart to the sun's light.

When we hear that a friend or loved one has cancer, we well up not only with tears, but also love. And we want to express it. But sometimes we're so busy trying to figure out how to help that we forget the power of a simple, "I love you," which can help more than anything.

Though it would seem we all know how to say "I love you" – you just *say* it, right? – it doesn't come easily to everyone. I came upon a few pointers at WikiHow, a website that, although anyone can post on or edit, often contains useful, albeit not always factually reliable information. In this case, it's not about facts; it's about heart, so I want to share it with you.

Here's how WikiHow's "How to Say I Love You" begins: "Although many people use this powerful phrase loosely, there are times when you want to say 'I love you' in a meaningful way. Whether you're professing your love to a romantic partner or expressing it to a relative or friend, it can be difficult to convey how much they really mean to you. Love reflects the intensity of how you feel. But by keeping the following suggestions in mind, hopefully your love will not only be understood, but it will also be welcomed and returned."

More excerpts about how to say "I love you" follow. But if you want to read the entire article, which Wiki says has been read 116,598 times, and make additions yourself, I strongly encourage that. Not only because it can help others, but because simply reflecting on how to love will make you feel more loving.

And, therefore, more complete. More human. And more fulfilled.

Always hope,
Lori Hope
Author of Help Me Live: 20 Things People with Cancer Want You to Know
http://www.lorihope.com

Steps
1. Define love. The sincerity of the phrase is strengthened by knowing what love is, and what loving someone means to you. . . [M]ake sure it's genuine love that you feel for this person. Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

2. Make it special. For many people, dropping the "I" allows the sentiment to be expressed casually, such as before separating (e.g. "Time to go. Bye! Love you!"). Using the full phrase, however, can be reserved for more intimate moments, especially during a special event, such as when a child is just born, or even to reassure someone when bad news has been received . . .

3. Make eye contact. If you love this person, hopefully you feel comfortable enough to gaze into their eyes when you express your feelings.

4. Say it at an appropriate tone. If you're at home and there's not much background noise, keep your volume low; don't whisper unless you bring your lips to their ear, which can also be a very intimate way to express your love. If you want to tell them how you feel in public, it's up to you whether you want to pull the person aside, or say it in front of friends or even strangers.

--For three more steps and a couple of tips and warnings, see entire article at http://www.wikihow.com/Say-I-Love-You

"I need you to treat me kindly, not differently."

2007-12-22T17:03:00.000-08:00

“I need you to treat me kindly, not differently.” That’s one of the “20 Things People with Cancer Want You to Know” and a statement I repeated to myself several times this week when I felt isolated and distinctly different. It reminded me of having cancer and the few times I felt coddled or pitied.

What prompted all this was that I lost something very precious: the ability to be heard and understood.

I lost my voice. Literally.

I woke up one morning at the tail end of a week-long flu, and opened my mouth to speak, but nothing came out. My first impulse was to fight it, to croak out words or whisper loudly, which I tried not to do. But two days later, when I walked into the offices of Give Something Back, a company I consult to, I had no choice.

It was great fun watching the reactions of my colleagues. Everyone, from the receptionist to the CEO, showed compassion.

“I have laryngitis. I can’t talk, but I can whisper,” I breathed out to Asma, one of my pals. Instead of speaking, she whispered back, “I’m sorry. How awful.” And so went the conversation, first me, then Asma, communicating in hushed tones, as if we were furtively sharing classified information.

I loved having my manner of speaking mimicked, because it showed sensitivity. And I learned I could laugh in a whisper.

“It’s national whispering week,” I declared to others who whispered back in kind. “Hey, let’s see if we can get everyone to whisper!”

But the lightness of laryngitis grew heavy as I left the save environs of a friendly workplace.

At the grocery store, the young curly-haired man at the fish counter reacted strangely when I tried to ask for help. “One pound of blackened catfish,” I whispered as loudly as I could. With a wrinkled brow and head thrust forward, he said, “What?” With the ambient noise of refrigerators and chatter, he couldn’t hear my whispered request.

“Catfish, blackened, a pound.” Looking slightly annoyed, he nodded for a moment but again asked, “What?”

Realizing he wasn’t hearing me, I pointed at the red peppery filets behind the glass, halfway toward the back of the cooler. “Blackened catfish please,” I whispered as I pointed, and then held up my index finger: "One pound."

As I walked through the crowded aisles of the small neighborhood grocery store, I had to step aside several times.

“Excuse me,” I whispered, watching one woman’s face go quizzical. I looked back at her after we’d passed, and she was looking back at me, as well.

“Sorry,” I tried to croak out to a rotund man, and again saw a shocked look and a hint of irritation.

I wondered what it must be like for people who cannot speak or hear. [Please don’t call them “deaf-mute.” An article by the National Association of the Deaf http://www.nad.org/site/pp.asp?c=foINKQMBF&b=103786 explains, “Deaf and hard of hearing people are sensitive as to how they are referred, because they have experienced being put down and disparaged by other people. They have seen their intelligence, their abilities, and their skills questioned simply because they are deaf or hard of hearing. Show your respect. . .by refusing to use those outdated and offensive terms.”

It’s not fair to compare what I encountered with what people with cancer, still so greatly feared and sadly stigmatized, experience. But the feelings of being different, isolated, pitied or even disparaged, ring true. I remember that from having cancer.

Living without a voice for a few days reminded me of that. And it also helped me listen better. As “20 Things People with Cancer Want You to Know” explains, “I need you to listen to me.”

We all need a voice, and we all deserve compassion, comfort, and dignity.

Always hope,
Lori
Author, “Help Me Live: 20 Things People with Cancer Want You to Know”
www.LoriHope.com

Many thanks to you

2007-11-25T19:24:00.000-08:00

Thanks to you for finding this blog. It shows you care enough to consider what others really want and need when they're going through tough times.

What you'll find here are stories, ruminations, and advice (which you are of course free to take or leave!)...and an ear to listen and a heart to accept.

More to follow. For now, thank you again. And here's a link to an interview Time magazine online's Claudia Wallis conducted with me about how to help a friend with cancer- http://www.time.com/time/health/article/0,8599,1667824,00.html It's a great place to start...

Lori Hope
author of "Help Me Live: 20 Things People with Cancer Want You to Know"
www.LoriHope.com