Two Other Books to Recommend

I highly recommend these two books.  They will create openings for you:

The Last Best Cure, by Donna Jackson Nakasawa

Here's a bit about the book:

One day Donna Jackson Nakazawa found herself lying on the floor to recover from climbing the stairs. That’s when it hit her. She was managing the symptoms of the autoimmune disorders that had plagued her for a decade, but she had lost her joy. For years, she’d been living on what she’d come to think of as the “Pain Channel.” She wanted to tune into the “Life Channel” instead. As a wife and mother of two, she was determined to get her life back. As a science journalist, she was compelled to understand why her brain might be her last best cure.

How To Be A Friend To A Friend Who's Sick, by Letty Cottin Pogrebin

Here's praise for her book:

"How to be a Friend to a Friend Who's Sick gives us excellent tools and moving experiences to love and nurture the sick and dying.  It urges and enables us to move towards those in need rather than fleeing in terror or despair.  it is a handbook of kindness and care and will help patients and healers, which is ultimately all of us."
-- Eve Ensler, playwright and activist

Book Recommendation: In the Kingdom of the Sick by Laurie Edwards

I think you will get a lot from reading Laurie's book -- as I did.  Here's a quote about the book:

"...People with chronic illness owe much to advances in medical technology, but they also are aware both of the limits of science and of society's throwback belief--subtle or blatant--that people who are sick have weaker character than those who are well. Through research and patient narratives, Edwards looks at the origins of these attitudes, and from the advent of modern vaccinations through present day, she traces the experience of being a patient with chronic illness through such cultural influences as the disability rights movement, the women's health movement, and the rise of the Internet and health 2.0 technologies..."

Critics call In the Kingdom of the Sick "surprising, revealing, and beautifully written," and a "probing, clear-thinking examination of the new medical crisis on our hands: chronic illness."

When Patient Becomes Caregiver

This is what I feel like shouting:

"Hey world, and all those omnipotent beings who flick the switches, I'm the one who is supposed to be the patient in this version of life.  You slammed me 12 years ago with a chronic pain condition and I've put in all this time coping, seeking, hoping, losing, and gaining.

I count on Richard to be well.  More than well -- to be strong and filter the world for me and do the grocery shopping.  Now you go and slam him with open heart surgery and valve replacement.  Jeez.  Couldn't you have started with something smaller - like a torn meniscus.

And, of course, you tricky devil, the stress of this experience is like a match thrown on the gasoline of my pain.  So there he lay in his hospital bed and there I lay, on the couch in the hospital room, curled up with an ice pack, trying to do my best to be attentive.

But I do thank you for making his illness experience such a good one, given the parameters.  He, thank you, is doing great.  Home, now walking, almost pain-free, optimistic, and even able to put dishes into the dishwasher.  HIs doctors are happy, which means we can all be happy.

But I have to drive him places.  And make real dinner and lunch and breakfast meals for him.  Which means I have to go grocery shopping.  Don't get me wrong,  a big part of me is delighted to be able to care for him and give back a bit of what he's done for me over the years.  And it feels great to help him, because I love him and would do anything I could for him.

But jeez, really....open heart surgery."

Dumb Things Practitioners Have Said

I have heard terrible stories about dumb things practitioners have said to patients.  For me, the worst ones are the ones said to women who are suffering by practitioners who don't know what to do, so they say variations of: "It's in your head."

I hate this for two reasons  One, it's paternalistic and dismissive. Two, everything is in your head.  Your head is connected to your cancer, arthritis, ulcer, aortic artery, and your nameless pain.  And, if you accept the mind body connection and the placebo effect as real, then the head is an integral part of it all.

I have never actually had this happen to me, even though my pain was mysterious and undiagnosed for many years.

The dumbest thing that was said to me was a doctor telling my husband to wait in the waiting room after I had asked if he could join us.

When you're a couple and one of you has pain, it's four hands that are carrying it, and two minds that are bearing it.  My husband's presence in the doctor's office not only gives him information, but gives us both a way to share in whatever is to come; and that makes it all a little bit lighter.

For the doctor, I was pain, not a person.  And he was treating pain, with chemicals.

I insisted Richard join us.  And what could the doctor do but acquiesce.

But it shouldn't have been acquiescence.  It should have been recognition that Richard and I are in this together and are each other's ultimate resources when pain puts the lights out.

What dumb things have practitioners said to you and your partner?

What Words of Wisdom Have Helped You?

I was just skimming through our book IN SICKNESS AS IN HEALTH, and the final chapter contains words of wisdom from our interviewees.  Some of them take my breath away.

Here are a couple of my favorites:

1. "Think like a person who is going to be around."
2. "You can have wholeness without recovery."

And here's one my primary care doctor said to me during some dark times that I held onto like it was my blankie:

"The body heals.  That's the only thing it knows how to do."


What are some of the most useful or moving words of wisdom or pieces of advice you've gotten, from any source?

How Important is it to Research Your Condition?

How important is it for you to know as much as you can about your condition before you even enter the doctor's office?

I used to think it was essential to show up with a folder full of JAMA articles and research papers from people with Johns Hopkins' pedigrees.  Richard, my partner, and I would divide up search terms and print reams of articles.  I used to think this made me credible and more likely to assist my doctor in naming and curing my condition.  I now know doctors mostly find it annoying.  That's only partly because some want to be the expert in the room; most often they get annoyed because for each study, there are a dozen flaws in the research methodology, and other studies with opposite findings.

Now I find that while it's useful to research my condition, it's even more important to find great doctors and ask them great questions.

Several years ago, I had a pain in my left knee that wouldn't go away no matter how hard I ignored it.  Finally I went to see an orthopedist.  She recommended an X-ray and an MRI to see if anything were broken or torn.  I was ready to sign on the dotted lines when Richard, who had accompanied me to  the appointment, asked, "What if we just rest the knee, ice it, take ibuprofen and see what happens?  Will that do any harm?"  The doctor replied that this approach would do no harm and might resolve the issue.  I asked her why she didn't recommend that in the first place.  She said, "I'm an orthopedist.  This is how I work." 

It's all about the questions (and about bringing your partner or a friend with you to remember to ask them). Here are some of the basics:

1. What's the diagnosis and why do you think so?
2. What else might it be?
3. What diagnostic tests should we do? What will they show and not show? What are the risks?
4. What if we wait and watch?
5. What treatment options are there?  What are their benefits and risks?

And here's a great one a friend who accompanied us to a consultation with a surgeon asked:

1. If there were a surgeon with as much intelligence and experience as you sitting in an exam room somewhere else in the country, what might he or she say or recommend that would be different from what you have just told us?

What questions have you found it helpful to ask your doctors or practitioners?

When the Ill Partner Has to Become the Caretaker

For over ten years I have been the sick one.  The one with a pain condition that is sometimes so quiet, I think it has just crept away.   But then it slides back with a build up of pinches and pulls; or it just steps right in with an hard slam to the gut.

I'm the one who is at the center of the life we've created around pain.  I get comforted.  I get spared the onerous household tasks when pain is on deck.

We know how to live this way.

Now, the tables have turned; the arrow is pointing in Richard's direction. Richard is going to get heart surgery.  We've known this was coming, any time between now and five years from now.  We just didn't think now really meant now.

My pain has no meaning in this new terrain.  In fact, my pain is a stressor to Richard and needs to be kept quiet, on a back shelf in the closet.  And if I have to be somewhat stuporous and slurry tongued to keep pain away, so be it.

The tables have turned and fallen right over and landed on their bottoms.

Richard doesn't really know how to let himself be taken care of.  And I'm not sure I really know how to be strong, the way I used to be in the before time.

So we're going back to the basics -- talking and holding.  I ask him questions.  "How do you feel?"  "What do you want?"  "What will happen?"  "How can I help?" And when the talking brings us too close to an edge, we just link arms, hold hands, or hug until the tremor subsides.

Have you been in the situation where the well partner became ill, for a while, and you had to invert your relationship, with the ill partner becoming the primary caretaker?  What  helped you both?

Carnival of blog posts about patient experiences with renewal is up at Diabetes Mine

Diabetes Mine hosted this month's collection of Patients For A Moment (PFAM) blog posts.  The theme was renewal.  They are a great collection and worth reading.

Does Illness Breaks Down Communication Walls?

Here is a story from an article in NY Magazine by Meaghan Winter that is largely about how weight can change relationships.  But the final vignette in the series is really about how illness breaks through the trivial and can accelerate the deeper conversations that couples who aren't living will illness may take decades to get to.

I think those of us who do live with illness as part of our relationships have known what it's like to be too exhausted or consumed to be able to squander communication energy on the easy (and delightful) irrelevancies like taking out the garbage and refilling the ice cube trays.  We have to quickly get to talking about how we are feeling (both the well and ill partner), what matters to us in the moment, what we feel capable of doing, and what are hopes and fears are.

Here is the story:

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Soon after Kyle and Alison became fast friends, he began losing weight and suffering flu-like symptoms. They started dating in their late twenties. One month later, Kyle, already “damn near gaunt,” was diagnosed with cancer.

Even as Kyle underwent chemotherapy, he kept working as a social media strategist and “tried very hard to project independence.” He had only recently moved out of his parents’ home and “didn’t want family doting.” Alison’s care allowed him his adulthood: “I tried to help him keep things as normal as possible,” she says.

Chemo so weakened Kyle that even picking a movie wore him out. Alison made their plans, and they often “restricted their radius to the neighborhood” because he was tired. Despite his illness, she didn’t consider leaving the burgeoning relationship. “I just wanted to hang out with him,” she says. Because Kyle’s illness immediately plunged them into “intensity,” “once in a while” she’d wonder, “Who’s he going to be in the future, my friend, my boyfriend, fiancé?”

Now that Kyle is cancer-free and they’re living together, they’re learning later than usual to negotiate “little New York couple things you take for granted,” like going out separately. Alison says that they “broke down the walls under a vastly different peril” means they can “broach uncomfortable topics” like how they’re feeling about themselves “without fear.” He adds, “It doesn’t mean it’s not awkward sometimes … But it never feels judgmental.”

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Do you have your own story about illness and communication.  I'd like to hear it.

My New Years Resolution: To Complain More

Complaining has a bad rap.  It's often considered a first degree relation to whining, which dictionary.com defines as: to snivel or complain in a peevish, self-pitying way.  That's four derogative descriptors in one definition.

The definition given to complain includes: expressing dissatisfaction, pain, censure resentment; to find fault.  Slightly more benign, but still pretty unflattering.

What if instead of complain, we used the term share, or repair, or even renew.  

When you have a chronic illness you can spend a lot of time and energy handling your care regimen, your exhaustion, and your pain.  On top of that, you need to manage your roster of daily responsibilities and chores, and also produce the emotional steam needed to stay just six inches ahead of your illness so you can function with dignity and benevolence.

Sometimes complaining serves as the necessary release valve so you don't combust.  One or two gripes expressed out loud can help you renew flagging energy.  Energy that had served to contain distress can be released and redirected toward fortitude.

I have found that saying, "I can't stand this pain another minute," helps me to stand it for a lot longer.  And after I say that, if Richard, my partner, holds my hand and says, "I know," we can both stand it together.

Sometimes complaining is connecting.

When someone asks you, "How are you?" instead of answering with the expected, perfunctory, "OK," sometimes saying, "Not so good today," or "I'm actually having a bad day," is honesty.  You're not deflecting the asker with a token response.  And if you then follow up your answer with, "I really appreciate your asking," you have made a genuine connection that will hopefully have more meaning for both parties.  

I'm not suggesting you do this with your Starbucks barista or Olive Garden waitperson.  But why not with your friend, colleague, or cousin.  And certainly with your partner.

In fact trying to keep your state a secret from your partner by not complaining is misplaced kindness.  It cheats both of you of a chance to connect -- the ill partner doesn't get empathy and the well partner doesn't get a chance to show understanding.  And besides, it doesn't work.  

When you don't complain and try to hide your real state from your partner, you fail.  Something leaks out that your partner picks up on.  If you don't share it directly (share being the new term for complain), misconceptions and misinterpretations result.  Your partner may think he did something wrong or that you're worse off than you actually are or that you're just being cranky.

So let's reframe complain.  Complain is share and repair and renew.  It may still be peevish to whine, but it's authentic to complain.