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Love from (anonymous)

December was a bit of a rough month for our family, but we got through it.  I suspect it would’ve been far more difficult to handle if not for the moments, large and small, that pulled me out of the immediate day to day stressors and showed me a much more beautiful large scale picture of how things really were when viewed as a whole.

Someone anonymously left a kind note on our doorstep and a wonderful hand made pad for Abigail.  It’s got the perfect amount of cushiony foam to keep her comfortable without being too bulky or unwieldy.  It has a removable, washable super soft microfiber cover.  It fits perfectly in the folding wagon we use to cart her around - the sides fold up to support Abigail so she’s not leaning on the flimsy wagon fabric, nor against the cold bars supporting the wagon through the fabric.  It also makes a nice portable play pad for Abigail for the times she doesn’t want to be on the futon in the living room, or on the bean bag in the play room.

Someone also anonymously left a large box on our doorstep a couple weeks later at Christmas.  It was full of wonderful gifts for the kids - webkins and other plush toys, coloring books, stickers, and puzzles.  All three kids were absolutely thrilled with the bounty, and still are.  Abigail is particularly attached to the Monsters, Inc. dolls.  Benjamin and Lilith play with those and the other plush toys, and still are coloring in the books and playing with the puzzles - their favorite things right now.

I have no idea who left either gift for our family, and the people responsible probably have no way of knowing just how wonderful their gifts really were to us.  Each was extremely thoughtful, not some generic token one might leave for a stranger as part of a philanthropy project.  It’s quite possible that the givers have never spoken to me in person - but despite that, they were moved to do something so kind and perfect for my family without any hope of reward or even a “thank you.”

The word “love” is so easily misused and misunderstood in a materialistic society.  It shouldn’t be this way; love is a human necessity.  Its essence is quite simple, although elegant.  Love is precisely what the anonymous gift givers offered to my family.  I’m so grateful to live in a world where I come across numerous people who express love to many around them, regardless of whether those people even consciously acknowledge the service they’re doing for others.  I hope I can continue to improve and be more like those who selflessly and thoughtfully offered such anonymous love to my family.

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We have always been at war with Eurasia.

I know that quoting Orwell makes people even less likely to read this - and, while I don’t agree with all of his observations on human nature, I do think this is apt.  Conflict is a remarkably efficient way of controlling a populace.

I’m not talking about overt methods, but rather, small or seemingly far away measures that influence our perceptions and limit our choices in ways we can barely notice.  Maybe these measures would be more noticeable if political conflict wasn’t raging all over the media, with garish and cartoony strawmen posted in every social networking corner.

The lawmakers that have so many frothing at the mouth on both sides are less invested in the latest conflicts than we’re led to believe.  Both parties are largely supported by the same corporations.  I strongly suspect that most of the differences in platforms are orchestrated to arouse our emotions by pitting our values against one another’s values, exaggerating disparity, and positioning us to choose all or nothing solutions that ultimately leave everyone unhappy.  Misinformation abounds, heightening the outrage and clouding our judgment.  

I doubt anyone could overstate the corruption rampant in our government.  Sure, it’s nothing new, and governments all over our planet have had corruption since their birth.  There are so many injustices that continually happen that I can’t change, can’t help.  I can’t stop the funneling of billions upon billions of dollars to a few corporations while most of us aren’t even aware that so much money is flowing toward a select few through unethical means.  I can’t feed all the hungry, can’t change the job market, can’t keep us from polluting and destroying so much of our planet.

Still… I can do some little things in my own area.  If I can teach a few volunteers how to use merino wool from thrift store sweaters to make fingerless gloves and compression vests for some of the sensory-different children at our local public elementary school…

I can reduce consumption of environmentally unhealthy synthetic materials like neoprene just a bit, save a cash strapped school a little bit of money, keep a bit more wool from a landfill, and help a few kids feel more comfortable in a snug vest that hugs them securely without getting hot, sweaty, itchy, or otherwise uncomfortable.

The little things I can do are more than just that, but I’d rather go do them than write about them at the moment.  Short attention span and all, ya know.

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Oh Etsy… a great blog post by an amazing jewelry artist

missmarlabee:

The internet is abuzz after Etsy had their Town Hall Meeting the other day.

And by abuzz, I mean staring at the computer screen like this:

image

And then reacting like this:

image



If you don’t know about it, here’s a recap.

For those of you who don’t want to read all that or watch the 2 hour press conference, here’s basically what has every LEGITIMATELY HANDMADE Etsy Seller past and present in a huff:

Read More

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Update on Family

I come from people who are a lot like me (in various ways - nobody shares the exact traits of anyone else).

The Tuten-Moquin clan is full of creative, empathetic, loving, strong, and passionate individuals (and I’m including those who have been adopted into the clan, whether through marriage or any other connection - you wouldn’t want to be part of us if you weren’t already like us in some ways).

When people live far away from each other, it can be difficult to really understand situations.  It’s sometimes easy to react strongly to a few misinterpreted words and form a horrific picture in one’s head, especially if a loved one is potentially in an unhealthy situation.

They listened when I clarified things.  I should’ve been in better contact before, which would’ve spared any worry and potential misinterpretation of things (but life busy, etc).  Nobody held grudges, and communication immediately became open.  I still hate being far away from extended family (on Josh’s side, too… and I want to get to know those wonderful people much better).  I feel connected to extended family, though, more so than before I was made aware of any misunderstandings.

I considered saying, “that’s why I love my family,” but, quite honestly, I’d love them anyway.  The quick resolve and drawing together I experienced after something that could’ve caused rifts in a different group of people is one reason I’m immensely grateful for the specific family I have.  I feel blessed to have been born into such an amazing group of people.  

I believe that love and connection matter far more than any other aspect of human interaction.  When people’s actions and words demonstrate their love for others and their attitude of valuing love above the trivial things, we get a small taste of how wonderful it could be if we were all connected with a celestial love and perfect understanding.

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Merino wool g-tube pads - why aren’t these a thing?  I see so many cotton or synthetic fleece pads.  Merino wool is incredibly soft, not scratchy like people imagine wool would be.  It’s naturally antimicrobial, flame resistant (actually self extinguishes if you set it on fire), resists odors, helps prevent bedsores, is breathable, and can absorb 30% of its weight in moisture without feeling damp.  Cotton, in comparison, feels soaked after absorbing just 15% of its weight.

100% extrafine merino wool sweaters aren’t that hard to find at a thrift store.  Merino wool does have different grades; feel the sweaters to make sure yours is soft/smooth.  They’re felted easily by placing them in the washing machine (with the rest of your clothes, as long as you can wash your other clothes in hot water) and then tumble dried.  I love working with felted knits over other felt because it has a very slight stretch, making it much more versatile for clothing, stuffed animals, and other stuff.

Felted wool doesn’t unravel, so there’s no need to hem anything.  I just cut the shape and make a slit in the middle.  Yeah, you have to make sure the feeding tube is disconnected from the button before slipping the pad on, but there are no fasteners or seams (or any stitching at all) to irritate a little one’s sensitive skin.  Sometimes simple solutions are the best, I think.

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To my relatives in Madison: what the hell, guys?

I recently learned of some incredibly hurtful and patently untrue rumors that have been circulating about me, my children, and my mom.  I had no idea things like this were being said, and since when is our family one that circulates drama?

My sisters, of all people, should know better than to perpetuate this.  We’re a family.  That’s not some idle term.  We were foreordained to be siblings; we knew and loved each other long before we were born, and we will continue to be bound to each other throughout the eternities.  Relationships are sacred - family relationships even more so, protected by covenants and honored forever.

The idea that any of us would even believe another of our siblings capable of mistreating our mom is sickening.  She brought us into the world, taught us things other children never learned from their own parents, sheltered us from the unhealthy things of the world, and always demonstrated selfless, unconditional love, which we now echo to our own children.  None of us would want to force her to do anything that made her less than happy, nor do any of us want to see her exhausted or ill.

We’ve all got struggles.  None of our struggles are more difficult or more important than anyone else’s struggles; we all love and need each other.  We’re family for a reason.

I’m posting my response to an uncle here, since I think the rest of my family should read it, as well.  The next time something upsets one of us, I hope we can bring it to the source and ask what’s really going on.  Unkind speculation, gossiping, and rumor mongering doesn’t become us, and it violates the sacred trust and love we have for each other.  So… knock that junk off, guys.  We don’t have time for ridiculous stuff like that.

*****

Uncle John,

Holy crap.  I’m not sure who has been saying such ridiculous things.  Heather has never even been to Utah, and Erin has visited our house maybe twice.  My mom wants to be out here; I didn’t persuade her.  She was exhausted living in a house with three dogs, working far more than 40 hours a week.  She says she’s happy here.  I figure it’s her choice where she lives.
 
She doesn’t nanny my kids.  Sometimes I ask her if she’s free to watch two of them (three in really rare situations) if I need to go to a doctor appointment or pick up groceries.  I don’t get out much.  Neither does Josh; he goes to work and comes home.  Sometimes I convince him to go blow off steam at the local hackerspace.
 
I don’t go off and do “arts and crafts” or waste time making junk.  If I make things during the day, which is pretty rare, it’s done in the living room with my three little monkeys climbing all over me.  Last year when Abigail was in the hospital following her fourth open heart surgery and her recovery was taking longer than expected, I volunteered to make some things for a charity in order to take my mind off the fact that my daughter was dying.  Sometimes I brought some materials to the hospital with me so I could embroider or stitch while Abigail was napping.  The hospital is an hour drive away, so it didn’t make sense to just go up there for 20 minutes or so.
 
Anything else I’ve made that couldn’t be done around kids was done late at night after I’ve put my children to bed.  I’ve traded sleep for time to create because if I didn’t, I’d feel like nothing more than a robot.  Some of the pictures I’ve uploaded to flickr are from a long time ago; they’re not indicative of any sort of rush of projects.  If people want to know what days are like here, they’re better off asking me than speculating.
 
What do I make?  Mostly stuff for my children - all three are on the autism spectrum and have very specific sensory needs.  For awhile, Benjamin refused to wear pants that were stiff, and the sweatpants at the store weren’t so great, either.  I’ve made felted cashmere pants for him, merino wool soaker shorts, and plenty of shirts/dresses for the girls.  I’ve made cardboard play houses and weighted sensory toys for them.  I’ve made a foam nest bed for Abigail to fill her needs when she was younger.  Sometimes I’ve made stuff for charity projects.  Every once in awhile, I’ll make something for a friend or neighbor, but that doesn’t happen very often; I don’t have time.  Sometimes one of my kids will go through a phase where they REALLY want a toy of a particular item, whether it’s a fire truck or fairy wings for a barbie.  It takes less than half an hour to make a thin cardboard fire truck, and that’s with Benjamin looking over my shoulder while Lilith plays with duplo blocks and Abigail flicks her sensory toys and drinks her bottle.
 
Sometimes I’ll unravel the seams of a thrift store wool sweater during the day, still with my children around me.  That’s not something that gets in the way of their needs; it’s easy to put down at a moment’s notice.  Meanwhile, my mom is usually outside hunting for rocks in the back yard, or pounding sticks into the front yard.  Those aren’t things I asked her to do; she decided she wanted to do them.  I’ve told her many times to sit down when she seems tired.  She doesn’t tend to listen.  She sounds out of breath often because she says she’s still adjusting to the higher elevation.  She gets just as tired at the end of each day whether she plays in the yard, takes one of my children to the park, or sits in her recliner and listens to an audiobook.
 
My mom kept asking if she could sleep next to one of my children before she even came here.  She prefers to sleep near a child.  We’ve always had low beds at my house; usually a mattress on top of a box spring, or a mattress on top of another one.  I prefer the zen feel of an uncluttered bedroom without hard corners of a bed frame.  The mattresses my mom and Lilith sleep on were purchased last year and are very supportive of the spinal column.  She is welcome to sleep in the downstairs bedroom.  She chooses to sleep with the girls instead.
 
The last time Erin and Alma visited was the day after we brought Abigail home from the hospital to die.  It was shortly after a very difficult meeting with her medical team in which we had to decide which medications she’d be on, what interventions would be best for her, and if we wanted her to die quickly or slowly and painfully.  This was after she’d spent a long time in the hospital an hour away, while Josh and I struggled to balance his demanding software career and two other very high need autistic children.   I’m sure our house WAS a mess.  Forgive me for my bluntness, Uncle John, but how about you or anyone else try dealing with all that stuff, swallow the idea that your small daughter is going to die within a few months, and see how easy it is to keep up with housework… does that seem reasonable?
 
I was also in the middle of trying to move all the fabric items from the front room into the back area, and remembered I had wanted to make baby Connor a cashmere sweater when they came.  I spent most of the brief time they were here quickly sewing a wrap sweater that would fit him and keep him warm (they’d forgotten his jacket or something when they visited, and I didn’t want him to be cold in the car ride back to Alma’s relatives).
 
The following days after Erin and Alma visited for just a couple hours, Abigail was clearly not tolerating some of her medications and was vomiting blood all hours of the day and night.  I was on the couch with her all night for all those times, and my mom definitely helped with Benjamin and Lilith while I was barely getting any sleep, helping Abigail when she was retching every hour.  I was TIRED.  I suspect any human would’ve been just as exhausted.
 
My girls don’t talk.  Benjamin says words when he wants to.  Most of their communication is nonverbal.  I can read my children better than anyone else.  I’ve taken the “Hanen More Than Words” course.  I’ve done extensive research on autism and various treatments.  Nobody knows my kids like I do.  I’m with them as much as humanly possible.  I’ve shown my kids’ occupational and speech therapists how I’ve made certain therapy aides for my own children so that they could make similar things for other kids who have sensory needs.  I’m not one to pawn off my kids on anyone else so I can do meaningless time wasters.  
 
If I choose to do something outside the home, there’s a damn good reason, and it always involves improving my community.  The Etsy Craft Party I’m hosting at the local hackerspace is not a typical event by any stretch.  It’ll bring in much needed members for the Transistor, and it’s not some stupid “make ugly junk that nobody wants” project, either.  I’m educating 50 women on different methods of recycling wool, helping them understand the environmental impact, as well as illustrating the benefits of using various protein based fibers over synthetics, including diverse applications for special needs or medically fragile children and adults.  I’d discussed the possibility of hosting this FAR in advance with Josh and my mom, and they strongly encouraged me to step out of my cave for that evening and help others learn something that would have an impact on their lives.
 
The real reason that we’re not leaving until the 25th, apart from Josh’s deadlines at work, is that I need two root canals and the 24th is the earliest they could get me in for the temporary crown.  Josh’s work deadlines aren’t a small matter, either.  Money Desktop might be barely older than a startup, but they’ve won Finnovate Best in Show for three years running, a feat unheard of in the financial industry.  Josh is a senior front end web developer; nobody can do what he does.  He’s repeatedly turned down offers to be a team lead because he doesn’t want to manage people, but he’s taught many javascript classes at work and elsewhere.  He can make a web browser do backflips.  He’s the reason MD’s interface is so elegant, so quick, and so seamless.  A whole lot of other people’s jobs depend heavily on how well Josh performs his.  Hopefully one day his 400,000 stock options pay off (they’re half vested now) and he can retire to do something he really loves and we can move back to the midwest.  We’re here for now, though.  We have a house.  Madison doesn’t offer well paying jobs in Josh’s very specialized field, and switching to an ASP/C# environment would be worse to him than very slowly driving a railroad spike deep into his brain through his temple, 1 nanometer per second.  Switching to a different specialty at this point would be similar to a cardiologist suddenly deciding to practice psychiatry.
 
I hope this clears a few things up.  I’m still astounded that there were any doubts as to my motives, or that people would assume such atrocious lies were factual.  I wish those concerns had been brought to my attention instead of allowed to fester and create a rift.  I wasn’t aware of any gossip or nasty rumors until you communicated them.  I’m not sure what else I can say.  Perhaps I could install a webcam in our house and keep it running 24/7 so that my extended family could monitor the safety of my mom and make sure I’m not taking advantage of her?
 
Meanwhile… I’ve got stuff to do.  I love you, Uncle John, but I’m still annoyed that you believed this garbage.
 
Sincerely,
 
Your Niece

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Life doesn’t suck. FYI.

I realized I hadn’t updated this in awhile.  That’s typical for me, but my last entry was rather negative (I’d been in a bad mood that week… it tends to happen every month or so), and I don’t want to give the impression that such an entry is an accurate representation of my life.

Abigail is still awake at 10:30, cooing happily as she watches Sesame Street songs on youtube.  Benjamin and Lilith are passed out in their beds; a nightly dose of melatonin is really helping their bedtime schedules.  I’ve learned that some other busy brain types (whether ADD or autism spectrum, kids or adults) tend to need melatonin to help them wind down and sleep at night.  I have trouble remembering to take mine.  Also… cymbalta is messing with my sleep cycle.  I haven’t been on it long enough for those initial effects to wear down.  It’s tougher to sleep and I have more headaches and dizziness than normal.  It’ll get better; the combination with my ADD meds seems to work for now.  The bouts of crushing sadness/feeling worthless are easing up, but it’ll take a longer period of time to more accurately gauge that, since they weren’t very frequent in the first place.

I still seem incapable of understanding the finite limits of time.  I always want to do more than I possibly can.  I hate needing sleep.  Days are spent playing with my kids, hanging out with my mom (who also helps with stuff), and taking care of typical daily things as they come up.  After the kids go to bed, I make stuff if I have any energy left.  I want to.  I seem to need to.  I might not have energy to scrub a floor, move shelves, or organize the back room late at night… but I can usually get a little work done on some small thing… maybe sand a small piece of wood that I started cutting out two months ago, add a few lines to a drawing I started last year, or unravel the seams on a wool sweater.  Some evenings I can even complete something.

Yes, it’s true that I sometimes make things for people I hardly know (although most often it’s for a friend or my kids).  I could instead only focus on people and things just inside our house.  I’ve essentially lived in a cave since the girls were born.  I don’t get out much.  Josh gets out to work and then comes home.  Our kids need lots of attention, lots of time, and I love being with them.  There aren’t enough hours in the day to finish every ideal thing.  Sometimes messes just have to stay for awhile.  Our yard won’t look nice for a long time.  The girls’ room won’t get painted for a long time.  The back room won’t be organized for a long time.  Those things won’t change, regardless of whether or not I spend an hour or two in the evenings doing something I enjoy instead of taking a shower or getting a bit more sleep.  Theoretically, I could spend my whole life busy just with my immediate family, avoiding all leisure, all hobbies, and still not finish everything that would make me an ideal wife and mother.

I choose not to do that.

I’m a part of my community and a part of this world.  Sometimes volunteering my time or skill is the way I connect with others and allow them to connect with me.  Because of the temporary but pressing needs of my kids, I live mostly isolated… but I won’t choose to be completely cut off from others.  I have things to contribute, insight to offer… and I also need different viewpoints, contributions, and insight from other people.

Life’s limitations demand choices.  My children are a huge part of my life, but they’re not all of it.  The woman I was before I became a mother didn’t suddenly disappear after giving birth.  She’s not supposed to.  Whether my free time in a day is five minutes or even five hours (although five hours is pretty rare), it’s mine in which to express myself, to define who I am, to rebalance, to reflect, to serve someone outside my family, or to do any other thing that rejuvenates me for the next day.  We all need down time, and the freedom to choose how to spend it.

I’m happy.  I wouldn’t be doing this if I weren’t.

And now I’m going to lie down next to Abigail until she falls asleep.  She’s crying because she doesn’t want to be in bed.  It happens sometimes.  I could let her cry and she’ll still go to sleep.  Tonight, though, I want to feel her tiny hand in mine, and to watch her face relax when I’m near her.  I want to hear her breathing peacefully, resting her tiny body for another beautiful and fulfilling day.

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not the best state of mind to write lyrics

Abigail’s music therapist offered to write (or help write) a song for Abigail.  I’ve been putting off writing the lyrics.

I wrote some tonight.

sweet baby girl,
your deep brown eyes and wide innocent grin
make all the dark things disappear
i don’t want you to go

not ever, but especially not yet
i didn’t get to show you so many things
or watch you grow up
or walk
or say words

there are so many times i should’ve stopped
whatever else i was doing
to spend more moments with you, staring at your face,
letting you poke me in mine
it doesn’t seem fair that someone as perfect as you
had to have such an imperfect mom

wait, baby.  don’t go just yet.  i need to sing to you again
read to you, hold you, touch your delicate fingers,
watch you sleep and listen to you breathe

special hearts don’t make it in this life.
i’m sure heaven is nice or something.
i know you deserve better than this world
but i still don’t want you to go
not yet
let me be selfish just a little longer, sweet Abigail
your smile is light and happiness

every day a little darker, filled with moments of joy and worry
lacy blue veins decorate your torso, spread to your fingers and toes
another sign that you can’t stay
i feel you growing lighter in my arms
your skin is getting delicate
and there’s no cushion underneath it when i pick you up
and i worry it hurts you
i worry your bones will poke through

i don’t want you to be unhappy
i don’t want you to be uncomfortable
but i don’t want you to go

not yet, baby girl.  just another little bit before i have to say goodbye.

 

At least they’re better than what I was considering writing the other day when I was still exhausted and in pain from the flu, and watching my kids suffer from symptoms too and being unable to fix it for them.  Those lyrics consisted of two words:  

f*#& life.

I’m probably not up to writing decent lyrics right now.  I’ll have to redo them when I’m feeling happier and less… honest.

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Decisions Nobody Wants to Hear About

We met with Abigail’s medical team a couple weeks ago when we were discussing transitioning her into hospice care at home.  It seems there are a lot of uncomfortable decisions you have to make when your daughter is dying.

How long do we want to prolong her life (within a certain limit) at the expense of her comfort?  How much comfort and choice do we allow Abigail if her choices are shortening her life even further than the few months the doctors expect she has left?

Do we keep her on the hardcore diuretics that keep her lungs clear but make her miserable?  If one of those diuretics messes with her electrolytes, do we allow a nurse to poke her every day and draw blood, knowing that it’s terrifying and agonizing for her with her sensory issues?  Or do we stop the blood draws and let her heart possibly go into arrhythmias from unbalanced electrolytes and kill her quickly and unexpectedly, but less unpleasantly than allowing a months-long decline?  Or do we keep her on the unpleasant arginine chloride that makes her barf constantly, to the point that her esophagus bleeds?

Do we plug her feeding pump into her when she stops eating more than three sips of food per DAY?  Do we try to treat the liver failure that’s resulting from her heart failure?  Or do we give her medications to make her more comfortable with the organ failure but which might speed things along?

I don’t feel like sugar coating anything.  Life isn’t all garbage, nor is it all sunshine, rainbows, and unicorn farts.  We’re going through a tough time right now.  I’m not going to be sane for the next while.  I won’t get enough sleep and I might not remember something you told me or return calls.  Hugs are probably nice… but for later.  I won’t process them right now.  I still love my friends and family, but I’m not up for regurgitating devastating information over and over again for each person that asks.  And I don’t really feel like crying in front of anyone, either… that’s private for me and Josh.

If you catch me, though, feel free to talk about other stuff.  I found a way to turn wool yarn (reclaimed from sweaters) back into wool roving.  Josh made a couple felting needles for me, and they work well.  Screw buying overpriced kits at craft stores.

Hojary and Aiden frankincense smell nicely pungent, but frankincense from India smells like ham.  Myrrh smells like old mushrooms… just so you know.

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Disjointed Connections

I can’t type much because the kids need attention, but I wanted to post something before life’s distractions pull me away again.

I’ve heard so much over the past decade or so about society’s ills stemming from the ease of electronic communication.  I’m neither supporting nor denying the claims of things like text speak dumbing down our communication; partly because it’s more complicated an issue than I could address, and partly because I don’t have much first hand experience with the affected generation.  I do, however, have some opinions about the connectivity of the world in general, and how it relates to the psyche of an individual and of society.  

We live in an age where we can very easily share information, and communicate (on some level) with multitudes of people.   We can effortlessly obtain items from all over the world; in fact, we often have no concept of the origins of most of our material possessions.  Who made your broom, your car, your shirt, your socks, your underwear, your pencil, your lamp, your curtains, or the multitude of other items you use on a regular basis?  How were these items made, what kind of conditions do the workers in the factory face, what’s the environmental impact of these things, and how long should they last before you’ll need to discard them and purchase replacements?  I can’t answer these questions about most of the tangible products in my life.  That’s not something I think I should feel guilty about, but it does raise some concerns.  I’m not going to spend time detailing the planned obsolescence of products so prevalent in our global society; that’s rather a given in this age.  I’m also not suggesting a radical shift to using mostly handmade things; machines and assembly lines make production efficient, and tend to raise the standard of living for many.  I do believe, however, that living in a disposable culture has considerable effects on us.  

Our valuation of items tends to decline when we live in such a culture.  Rather than getting derailed by outlining the details here, I’ll post a great link here to an illustrated story I remember watching a few years ago:  http://www.storyofstuff.org/movies-all/story-of-stuff/  Stuff costs more than what we pay for it at the store… but we become numbed to the real price and impact.

Our valuation of people and relationships seems to have experienced a similar decline.  We no longer spend so much time in face to face conversations, where we get immediate nonverbal feedback from each other, sharing emotional exchanges that can’t translate so easily into texts or tweets.  This NPR interview with Sherry Turkle, a clinical psychologist and the founder of MIT’s Initiative on Technology andSelf, brings up some of the concerns about emotional impacts of our changing methods of communication:  http://www.npr.org/templates/transcript/transcript.php?storyId=163098594  Turkle states in the interview that as we move away from face to face communication, we lose “the skills that we get from talking to each other face-to-face, which are skills of negotiation, of reading each other’s emotion, of having to face the complexity of confrontation, of dealing with complex emotion, of dealing with confrontation.”   Distant types of communication allow us to be cruel with little thought; sure, we can rationally conclude that our harsh comments will likely cause pain in another human being, but because it’s not immediately in front of us, the concept of our words being harmful becomes more abstract and therefore easier to ignore.  We also miss out on many good and subtle traits about people, things that could enrich our understanding and compassion for each other.

I believe that this separation of our words from emotional consequences, when combined with societal institutions which prioritize the preservation of a system far above the needs of the individuals, leads to a pathological indifference and lack of empathy for others on a massive scale.  Once society becomes sociopathic, these traits are seen as normal and therefore healthy, making it more difficult for many to spot any problem at all.  Public schooling is one such institution, of course (although others exist as well), and John Taylor Gatto has done excellent research on the history and impact of modern schooling.  http://www.johntaylorgatto.com/chapters/15e.htm  This chapter of his book The Underground History of American Education mentions some of the unhealthy tendencies that naturally result from institutions being run in a certain way, and therefore become the social norm.

Mental illness in general is still stigmatized on the news and misunderstood by most.  Even as the neurodiversity movement has gained momentum, disparity between two “sides” of those who support it and those who discount the concept has increased.  I would personally rather it be considered a concept than a rallying cry.  Differences in the human brain are not starkly black and white, and my idealistic side would have me believe that a natural spectrum of human diversity should be a widely accepted given.  I don’t think that deviation from a statistical norm should be the basis for labeling a pathology, although I do acknowledge some of the confusion may lie in different definitions for the word (one of which refers to variation from normal, rather than from a healthy or functional state).  Labeling a difference a pathology, at least in my mind, should be based solely on its hindrance, not on statistical averages.  A widespread trait held by the majority of a population can, in fact, be unhealthy, harmful, and therefore pathological in my book.  In those specific cases, deviation from the norm would be considered healthy (in cases where the deviation led to more functionality and more health).

We all have different experiences and viewpoints.  Our differences in talents and observations are valuable when we share them with others, and learn from theirs in turn.  Even those who have a statistical variation that is and should be considered a mental illness (based on functionality) have valuable insight to offer.  If we could interact with everyone on a more personal and emotionally respectful level, our diversity would become a stronger bond that enriches our world, rather than a divisive obstacle that hampers understanding and kindness.  We could, in that same vein, become more aware of the products we buy and use, and of the diverse background of the origins of our stuff - not to feel bad about what we or someone else purchases, not to be overwhelmed with the massive impact of our lifestyle, but to simply have a better understanding of how our actions and our decisions affect the whole world.

It can be difficult to internalize the things we can’t see.  That’s why I believe connection and awareness are so crucial if we’re concerned about any of “society’s ills.”  The truth of the matter is that we do have an effect on each other and on the environment, no matter how blind we might be to the impact.  A small impulse that we act on and immediately forget could drive another individual to tears, fund the killing of a single endangered animal, or pollute a village water supply.  A similar impulse could also bring hope, save a life, or increase economic opportunity.  We’ve all got a lot of stuff going on in our lives, and it’s not realistic to overwhelm ourselves with information on the effects of every one of our actions, words, and purchases.  We can start somewhere, though.  We can get to know an acquaintance a little more personally, smile and look a cashier in the eye, and give some supposed jerk the benefit of the doubt.  We can find out where one of our items comes from, maybe learn how something is made, and even consider buying a sturdier, more sustainable version the next time something breaks and needs to be replaced.  We could even consider trying to make something ourselves… not to save money (because it likely won’t, at least at first), but because it increases our connection - to the things we touch, to other people (whether in the maker community or those for whom we make an item), and to the world around us.

I’m trying hard not to quote John Donne or Leo Tolstoy here, but I want to emphasize how intrinsically we’re all connected to each other and to the earth.  We can do little things to counteract the outside forces that harm those connections, and our example can encourage others to do the same.  Becoming more aware and respectful of our connections leads to a happier, healthier, and more fulfilling life for each of us.