The soul of the child

Sometimes I feel like all I do is think, wonder, dream, write, and work to change the health care system at the level of the individual. But, in reality, that's just my hobby.  My real job is Mom and home is where I do all of my primary research on healthy living for individuals. Call me a "techno-domestic sensualist." Which is why, for this post, I'd like to celebrate the soul of the child. 

I look at the soul of my child as an aspect of my own soul, and use this framework for keeping in touch with my child's inner life without being overbearing. 

I recently experienced being interconnected with my son when he had a tough year in school (last year). It wasn't tough in a traditional way; there were no bad grades, no attention issues, bullying or behavior problems dogging him. His grades were excellent, his teachers liked him, and his behavior was just fine. The trouble was, his heart and soul weren't present.  He wasn't engaged in what he was doing in the least. He was drifting. He was sad. He didn't want to go to school.

This is the kind of disconnect that makes a mother crazy. I mean, when your kid needs help, I for one prefer to have a clear failure to point to, not a murky, uneasy, sinking feeling that something unnamed is amiss when we go to the school admin and ask for help. And yet, the soul of my child (which is how I framed the problem we had) was whispering in a quiet voice and moving to its own rhythm.  You can imagine the challenge I had bringing this to the table in a traditional school environment. 

I spent roughly 4 months advocating for our son at our neighborhood public school. The work included: initiating mediation with our Principal, lots of bedtime conversations, staying in constant contact with the school and asking for specific changes to his school day. It took dozens and dozens of hours from work, and was truly uncomfortable to become such a squeaky wheel. But what was the other choice? If not a parent, then who will advocate for the soul of the child?

As I stepped through this process, I was mindful of just how fortunate we are to know how to work the channels. There are millions of mothers and fathers who don't know how, or are too strapped for time, vision, confidence, or money to take even the first steps outbound to the school on behalf of their child.  

I am going to skip some detail about how things resolved. Suffice it to say that he recovered by the end of the year, but that we have also moved him to an independent school where he is thriving.  

Here's the point: Pay attention to the soul of your child. Trust your instincts. When you feel burnt out and as if you just cannot do another thing about the situation, take a rest and count it as a blessing that you possess the tools to be a powerful advocate. Your child's soul is watching, and learning how to do the same for itself someday.



"Doing" health

My comment, "No one knows how to “do” health" on last night's #hcsm radio session brought some puzzled tweets my way.  Let me expand:

Health is learned
On the most fundamental level, a health encounter in our system is a learned transaction. It is a learned experience. No adult or child knows how to “survive” cancer, or “beat” diabetes, or be a parent for that matter when he or she starts on day 1. Quite the contrary.

Health is developmental
Health is a developmental process, a series of baby steps deeply and inextricably linked to cultural norms and expectations. Since so many of those norms are being challenged right now, it is a great time to think about how we learn to navigate the health system and what opportunities exist today to make improvements.

Oversimplifying this I realize, but if you were taught not to ask questions of your doctor, then you'll probably need more encouragement to start asking questions and participate more. If you were taught (from experience or environment) that medicine is a crap shoot, then you may be more comfortable advocating for yourself or another in a health care setting. You might feel righteous ... as many do. Or, you may simply give up from the stress of it all and become uncompliant.

We learn by participating
My point is that we learn to "do" health. We learn by participating. By showing up and "muddling on through" in many cases. We learn by accepting uncomfortable treatments, procedures and interventions; by asking questions and wrestling with the answers we get until we are able to take a step forward. The maddening paradox is that healing often brings discomfort, at least initially.

And more discomfort is hard to tolerate when you're in a healing crisis.

"Just right" health care
A patient learning how to participate in her own care can look a lot like Goldilocks from the children's classic. An empowered, participatory patient won't stop looking and learning until she finds what feels "just right" right to her. While the social web can help a patient climb a steep learning curve, so may pharma, tech, friendship, prayer, play, and (____you name it here___). These are all powerful cultural modalities in the healing repertoire.

So, while we don't start out knowing how to "do" a health crisis, the silver lining is that wherever you begin your challenge along the continuum of health, you will have an opportunity to learn and develop. That's right; we are all beginners. Even doctors and nurses are beginners when it comes to their own health crises. And while anything can happen, there is no guarantee that it will.

Get better at health by practicing it
Whether it is learning to eat better and exercise; stay calm and organize a response to a terrifying diagnosis; work like hell to seek alternative treatments; or advocate to “free the damn data,” as ePatient Dave says - adults learn how to “do” health by participating in it.

The good news is…we get much better at "doing" health with practice. Start when you are healthy.


Related posts:
Communicating with doctors: Practice when you're healthy
Are we betting on the "me" in medicine?


Why tech firms target moms

Most of us have recently seen headlines such as this one: This is not your father's gadget: Tech firms target moms.  This constant Recession/Reform era re-positioning of Mom as "The CEO of This and That Domestic Role" has got me thinking about an insidious pattern of patronizing women...

Take this quote from the article above:
When families with children set out to buy a new laptop computer, for example, it is Mom, not Dad, who is more likely to initiate the discussion, the study revealed. And Mom is more likely to make the final decisions on what features to look for and how much to pay for it.
Most striking is that Mom is much more likely to use the new laptop than Dad. The survey found that 96 percent of mothers said they would make “regular use” of the device, compared to only 80 percent of fathers.
Moms use laptops? Astounding. Groundbreaking. How could we have missed such big news?

If you detect a bit of sarcasm in my tone, you got it. I have a different take on the trends. Moms buy technology because they Have to Get Stuff Done or their kids won't make it. Further:
  • Moms buy computers, gaming systems, gadgets, etc., in part, to keep control over the extent to which others in the house get to use technology. They set the tone. (It may look like offense, but it is actually defense.)
  • Moms buy cameras that help them get stuff done so that after work and cleaning and putting the kids to bed they get a professional result when they spend 100s of hours doing image editing and uploading shots as CEO of the "Family Memory."
  • Moms conduct lots and lots of online health research because -- either separated from or disappointed by their extended families -- there is literally nowhere else to turn for quick health advice that wouldn't involve 1 hour waits, high co-pays, and time off from work. (The Library used to be handy, but they've had to trim back on evening hours due to resource constraints.)
  • Moms buy and adopt technology to serve others and to feel successful about serving others. Mothering, in spite of all the media noise surrounding it, is still one tough and invisible job.
I'll leave you with this: If you are in the business of developing products for women -- or are in the business of marketing a tech product or concept to women -- spend some time going a bit deeper before you claim to have broken new ground. Ask yourself, "How does my product serve women?" Upon a closer look, you'll see that emancipating them from serving others is probably not something your tool offers, so don't package it that way. Your tool helps a woman get stuff done for the family.


Unleash the hot talent: A letter from a patient

An appeal for Participatory Medicine, inspired by Diva e-Patient friends and colleagues:
January 2010 

Dear Wonderful Doctor and Care Team,

I am writing to suggest that you cast me in the most important performance of my life: My Health Care Crisis.

I realize you hardly know me and that you can't really stop to get to know me at this point because there is a long line of folks just like me waiting for your services... But since we're suddenly on a kind of "Fast Track" to get to know my body (given last week's diagnosis), I was hoping that you'd at least consider giving me a supporting role in my upcoming treatment. 

I'll play it straight; no Femme Fatal, Gypsy Rose Lee, or Little Lost Soul. Nope, I'll go for a completely modern (dare I say, "sexy") evolving archetype, The Empowered Patient.

I am sure you have questions. And yes, I am a rookie. I cannot predict with the exactness of a doctor like you the outcome of my involvement in my care. But acknowledging that I have a role would be a powerful component in the show. And this is a kind of show, Doctor, isn't it? 

What do you say? Can you accept a wee bit of showmanship from the patient side while you miraculously cut that large tumor out of my endometrial liner and administer powerful technology reserved for only the most specially trained among us? This *is* high drama but I promise I won't be too saccharine or too melancholy. I'll take the pain meds as directed and open up to the fear as best as I can.

Doctor, if I haven't made it precisely, exactly, clear to you yet, I think we make a great team. You've gotta let me show you what I've got.

Your Patient



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Predicting the future

Yesterday, my 3rd grader came home with an assignment asking him to write up his predictions for the future. It read: "What are some of the changes you imagine will take place in the next 100 years?"

We got to talking.  My son offered a few inventive ideas inspired by experiences with technology: the Wii, TV, the remote, iPhone, instruments, the computer, cool cars, etc. I made a single prediction. I predicted that in the year 2110 we'd have 30% more land being used for active farming in America.

His eyes glazed over at my suggestion and even I had to chuckle at how outlandish the idea seemed. But who knows, maybe it isn't that outlandish after all. Consider it. Given the speed with which people are becoming conscious of the food-farm-health connection, maybe reclaiming a percentage of the land and the productivity we've lost is possible.

Stranger things have happened in America over a span of 100 years...