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?