Brain Surgery

I realized recently that I never posted much here about the biggest little thing in our lives this past year:  Brian’s Little Friend, the asshole brain tumor.  The acoustic neuroma that appeared out of nowhere, so big that every surgeon looking at his MRIs had to do double-takes and come back to us saying things like, “Did you see those pictures?!?!” The tumor that is technically classified as “giant”, since a “large” neuroma starts at 2.5cm and Brian’s is more like 4-4.5cm.  The tumor that has already taken away his hearing and balance on one side, leaving him now deaf as well as blind and struggling for balance.  The tumor that has already required one extensive brain surgery, needs another one in less than two months, and might require yet a third surgery or radiation to completely eliminate.

Such a little thing.  Such a huge disruption to our life.  All our plans went on hold as our stress levels went through the roof.  Just dealing with the anxiety and panic attacks, for both me and Brian, has been difficult, to say the least.  Brian is still in pain more than six months after the first surgery, and knowing the second one isn’t going to be any easier is not helping with the anticipation leading up to it.

It keeps surprising me when I run across people in our life who haven’t heard yet.  And then I have to explain all over again, and people never know what to say. Who would? It’s the ultimate conversation killer.

We received some wonderful gifts from friends and coworkers last fall that helped us get up to and through the first surgery.  We were able to take a wonderful trip down to the Caribbean, and tour some breweries in both Michigan and Florida.  We’re hoping to get some support again as we head into Surgery Part Deux, because we’re maxing out the credit cards right now just trying to stay sane.  Going to do it anyway.  But anything helps.

And if you’ve wondered why I’ve been a little flaky this year, why we haven’t been at festivals much, why I keep not going out…this is it.

If you’d like to help you, you can contribute to our Part Deux fundraiser below, and blessed be to all who can help, whether with money, or prayers and energy.

Click to Donate Now!

Need New Routines

Before we get started, I’d like to announce that anybody who says, “You need to get your kids to do more of that,” is automatically drafted to come live in my house for two weeks while I take a much-needed mental health vacation alone.  You get my kids to do that, and then you can show me how you did it.  Or you can run away screaming and never say that again, which is what most people do. The best I’ve been able to get on a good week is my kids doing maybe half what they are capable of doing, and most of that’s only if I stand over them, telling them exactly what to do and how.

It’s time to shake up my life again.  My health is doing some things that say my self and my body need more attention.  My gods are seeking my attention.  My home desperately needs more care to again become the haven it should always be.  And my budget needs more income.  My husband is having his second brain surgery in less than three months, and having good solid routines in place in a house that is clean and welcoming to him would be a huge blessing right now.  I need to find a way to maintain my health, mentally and physically; to cook healthy meals for myself and my family; to maintain my daily contact with deity; to devote necessary time to school and church commitments; to teach Kender how to read and stay on top of schooling for Jarod; and to declutter and clean my home and maintain it that way.

Last week, I worked really hard, but I couldn’t get much past the daily chores, laundry and dishes and cooking and such.  I spent 19 hours driving last week, which is not entirely unusual; although when my second-oldest is home she helps with the driving, she is gone for the next three weeks, and when she gets back she has her own job and school to deal with.

I have been on top of my game before, but things are always changing around here, so I am seeking crowd-sourced suggestions on new routines for getting things done.  The current skeleton parameters for my life are:

  • 8 hours of sleep per night for me, with an average wake time of 9am
  • I’m guessing an average of 5-10 hours a week of driving people around
  • At least two doctor or vet appointments per week, sometimes more (for reference, I see ten appointments for somebody other than myself on my calendar over the next month)
  • 2.5 hours of therapy for Kender on Fridays
  • Date night with my husband used to could be a weekly or monthly thing, but for his sake right now needs to happen at least twice a week, if not more

General household requirements:

  • Two loads of laundry every day
  • Two bathrooms to care for
  • One dog that must be thoroughly brushed, walked, fed, medicated, and trained every day
  • 5-6 cats with five litterboxes that need daily attention and medication
  • Dinner for eight every night (plus occasional guests, with planned leftovers to cover lunches and off days, requires menu planning and shopping time)

Here are the additional things that I need to add in just for me:

  • Time for nutrition logging and body monitoring (blood pressure, blood sugar, etc.)
  • An hour a day for exercise
  • Time for personal hygiene
  • Daily meditation and journaling
  • Daily time to create (knitting, crochet, sewing, whatever)
  • Time to pay attention to my household altars and shrines
  • Time for music, I have a harp and a piano here that are only getting played once every 2-3 months right now

Household additions that are needed:

  • 15-20 minutes per day decluttering and clearing
  • Regular time each day to balance the checkbook and pay bills
  • 1 hour a week of routine housecleaning
  • 15 minutes per day of deeper house cleaning
  • Regular time for home repairs (and time to learn how to do them)
  • Time for car cleaning
  • Time for yard work and gardening, so the outside looks welcoming and all my plants can survive

For my own seminary studies and volunteer work, I would like to have:

  • 2 hours a day of study time
  • 1 hour a day of volunteer time
  • Time to work on community commitments (writing rituals, prepping and holding regular sabbats, prepping workshops, maintaining my blog and social media pages)

For my kids’ homeschooling requirements, I need:

  • 1-2 hours a day working with Kender
  • Time to prep Kender’s school materials (the Brailler needs a complete overhaul, his books have to be brailled, things need tactile labels, etc.)
  • Time for field trips and park days with our homeschool group
  • 1 hour a day working with Jarod (with the rest of his to be done on his own, and reviewed during our time together)

I also need time for errands and things like:

  • Getting the car maintenance done (the little car has needed tires and alignment for two months now)
  • Giving gifts (bloody hell, I wish somebody else could do this for me, I love my peeps but I am a terrible gifter)
  • Sending thank you notes to people who have helped us (yeah, I know…)
  • Getting old clothes out to Goodwill, getting bottles out to the recycling center
  • Filling out paperwork for doctor’s appointments, A’Kos certification renewals, school forms

What I have found to work well in the past is to have strong routines, wherein the same thing happens every day.  This has been hard to maintain, especially since Kender was born and the doctor appointments started increasing, and since the older kids became teens and started doing so many things away from home.  I can’t even keep the doctor appointments away from the days we do other things, because (for example) our homeschool group does our weekly co-op/park days on Tuesdays, which is also the only day our retinal specialist sees patients.  Things like that.  I feel like every time I have tried to establish a regular routine over the past few years, it’s gotten shot in the face.  Nevermind how difficult it feels to me to be able to fit all these things in.  If I had all my wishes come true, there’d be money for a private school for Kender that would place him in kindergarten despite his age and adapt all his materials and teach him Braille, and there’d be a housekeeper coming in here once a week to do all the major cleaning.  Not sure anything else could be outsourced.

But anyway, there it is.  Give it a try.  Leave a comment here, or on Facebook, or come by and chat with me sometime.  I’m open to suggestions.

The Plan

God has a plan. Pick your god, they all seem to have a plan. Or at least that’s what people tell me. The message comes in many flavors. Some of them I have expressed a personal belief in myself. Right now, I am struggling with reconciling all these messages of planning, safety, and purpose with my life right now. I don’t think I would call this a crisis of faith, necessarily, although the phrase has come to mind. It’s more of trying to wrap my mind around the way things are at the moment, and relocating that inner sense of peace and purpose that tells me my beliefs and my reality are aligned, and I am moving again in the right direction.

I’ve been quiet on my blog for a while, but as usual life continues at breakneck speed around here. As of today, I am finishing up my junior year at Woolston-Steen Theological Seminary (with homework that needs doing), working towards my second-degree priesthood for the second time (new tradition), running an online and festival-based business selling the full variety of handmade things I can create, homeschooling my two youngest children, trying to keep my four teens on track with their own schoolwork and life planning, and coordinating and managing medical care and therapies for blindness, autism, allergies, and hypermobility for myself and the other seven people in the family. A couple of months ago, I felt like I’d managed to find a balance for all of this and was feeling that sense of alignment and purpose, moving forward and getting things done.

Then we found out about my husband’s Little Alien Visitor, the giant brain tumor. (“Giant” was the neurotologist’s word, I didn’t make that shit up.) And I feel like every kind of “missing floor” scenario happened all at once, and just won’t stop. Missing the top step, falling down the stairs, waking up from a dream of falling, the memory loss you get from head trauma. I feel like my brain is completely scrambled, and I can’t seem to find my footing. The falling never stops.

We’ve been down the path of new and crazy medical things before, certainly. And every time a new diagnosis comes along, there’s people who try to offer advice that comes across as offensive or at least not at all helpful, like the woman who wanted to sell me her company’s special blend of macronutrients to cure the genetic condition causing my baby’s blindness (puh-lease!!).

What’s really getting to me right now is the comments about planning (and the subtexts that I hear inside them). My Baptist mother-in-law tells my husband that God has a plan, so don’t worry (because God plans on disability and pain and suffering, and let me just state right here that I find that idea abhorrent when combined with the idea of only getting one life on this planet). I hear variations on the same theme from various teachers in seminary: The Universe is a safe place (so death, disability, and permanent brain damage shouldn’t be anything to be afraid of). It doesn’t matter how crazy your life is, we all choose our priorities (as if I can just sort of choose not to get therapy and medical treatment for my children or clean the house or be there for my husband during this or something).

And this is where I get into trying to align my perceptions and feelings right now with my beliefs, because I have espoused the planning concept before, in different ways. I have always believed that we choose the lives we expect to live before we are born, that as non-corporeal spirits we have a wider multidimensional view and have some idea of what we are getting into when we choose a body. I believe that we know the genetics of the body we are coming into, and we know the personalities of the parents we are choosing, and we are actively making those choices either to accomplish personal spiritual developmental goals or to place ourselves in a position to help somebody else with their own goals. So yes, I believe that babies who die shortly before or after birth chose that path, that my husband chose a blind body, that I chose a hypermobile body with a neuro-divergent brain. I also believe that I was destined to meet up with the family that I have, blindness and all, that I knew they were coming my way long before I even met my husband. I don’t presume to know or understand why some of these choices have been made. But I believe that I knew before I was born into this body, and that I will know again after I move on from this life.

So I guess that means my struggle right now is to accept all of that, without being able to understand why. And I can’t seem to get there yet, and maybe that’s why I keep feeling like I’m falling and I can’t ever manage to get up. I don’t do the “denial” stage of grief much, because my logical brain doesn’t see the point. But I am smack dab in the middle of the FUCKING ANGRY AS ALL NINE HELLS stage right now, of wanting to scream and cry and ask “Why” at the top of my lungs, because it’s NOT FAIR, it’s NOT FAIR AT ALL, and how dare anybody plan this shit for us.

Ideal Body Weight

I will open this by saying that I’ve been told I was overweight or obese my entire life. My whole life, all the way back to junior high. My mom had me in Weight Watchers and special exercise programs and therapy programs for fat kids as a teenager. I learned all the height and weight charts and everything they had to say.  I’ve known ever since I was 13 that I was supposed to weigh 135 pounds, no more no less, and until I did I would be considered unhealthy and a health catastrophe waiting to happen.

I’ve also known that I don’t have a typical woman’s body.  My bony wrists are so big that I can’t buy bracelets and watches for myself off the women’s jewelry racks.  My bony fingers are so big that I need men’s sizes in rings.  My bony ankles and feet are at the top end of women’s shoe sizing, and so wide that I can’t even buy shoes in the regular stores anymore, especially not with the arthritis in my feet.  I have to make broad back adjustments in any clothing I sew, and jackets and coats never fit me off the rack because of this.

As an adult, my weight has cycled up and down quite a bit, but I have never once been below 170 pounds, not since I was 15 or 16 years old. I think I was around 210 when I got married.

19940205 Elayne and Brian

Mostly I’ve bounced around between 170 and 210.  I think I was around 175 when I took this picture, and I wasn’t very active at all, not doing any real exercise outside of housework and child care:

20070818 Elayne

Here’s one of me when I was probably 210 or so, near the end of my running period.  At this point I was running about 40 miles a week and doing lots of strength training, so the shape of my body and my strength were very, very different from when I was 210 when I got married.

20130319 Elayne

Somehow over the course of the years, I started to lose that belief in the height/weight charts, and the BMI numbers that succeeded them.  I could see that they didn’t work quite right for me.  I spent time researching other ways to measure my health.  I could see that I was a runner who could do 12 miles at a stretch and then drop and give you 20 pushups, and yet my weight wasn’t what the weight fanatics said it should be.  I found alternate ways to measure body composition, using a variety of body measurements, and found that at the peak of my running and strength training, my body was right about at an ideal 26% body fat even though my weight was over 200 lbs.

These days I’ve gotten back up to the large end.  My weight is between 230 and 240, but my clothing size is about the same or smaller as when I got married, about 18/20.  I’ve let myself go, even though I have some residual muscle hanging around from the running days.  I stopped exercising almost entirely when I had to stop running.  My pain levels just kept going up, and I kept thinking a little more rest would do the trick, until I realized this past winter that it had been almost three years, and now I was having trouble getting up when I sat on the floor.

13267899_10154846323619745_7478290106310719285_n

I saw my blood pressure going up, and I had several nudges from the Goddess to wake up and start taking care of myself again.  So in April I started walking every day, and in June I started up my strength training again.  I don’t feel like I’ve gotten very far.  My shape is the same, and my weight is the same, and my pain is about the same.  But I can feel the functional difference when I get up off the floor, or get the bug to clean the house.  Life is getting just a little bit easier with every week, and that’s good.

Last week, I participated in a medical research study. They paid me $20 to poke and measure me for a couple of hours as part of a study on the long-term effects of chronic illness on overall health. During this, I got the chance to step up onto a very nice high-tech body composition scale.

This wasn’t your ordinary bathroom scale, with the little pads you put your feet on. Those don’t do much better than height/weight charts, really.  I’ve owned a couple, and I’ve been put on them in doctor’s offices and weigh clinics.  The best number I ever got out of one of those was probably a projected ideal weight of 145, which is only a little better than that 135 height/weight number.

This high-tech scale was something else entirely.  It didn’t just have feet pads, it had something for my hands to hold on to as well, and according to the printouts it measured each quadrant of my body as well as the overall total.  Can you guess what it said my current ideal body weight would be, the weight that would bring me back to 26% fat if nothing changed in my muscle mass?

11963589-inbody-body-composition-analyzer

173 pounds.  That’s with me feeling out of shape, with a lower than ideal amount of muscle on my body.  Still, it says my ideal weight is 173 pounds, and that’s if I did absolutely nothing else to get stronger and more functionally fit, and just starved my body to drop fat.

I feel so vindicated now.  I feel very sad for teenage me, thinking I was fat when I wasn’t, letting that drive me into giving up so many times and letting my body get truly unhealthy because I still had it in my head that the number on the scale was everything.  I feel even more sad for all the other girls and women, and men, out there who think this number on the scale is everything still, who do amazing things for their health and fitness and then eventually throw it all away because of the frakking number on the scale.

But I feel very happy to see that I was right to think that I was healthy at 210 a few years ago, and now I know for sure that it’s okay to let that thinking continue and nurture it and let it grow as my body grows stronger again.  And this time, I will not be ashamed of my clothing size or the number on the scale, dammit!  I have a strong body, a beautiful body, and this is the shape it comes in!

Gonna Get My Groove Back

I am getting achy again as winter creeps in, and I am tired of feeling like everything takes forever around here, so I am going back to an old tactic I used as a kid that works much better with today’s tech: the timer!  I’m going to race myself against the timer and see how I do, see just how long things really take if I apply myself.

My current list of daily essentials looks like this:

  • Brush out my hair
  • Shower and dress to shoes
  • Brush my teeth
  • Clean the downstairs bathroom
  • Reboot the laundry
  • Clean the upstairs bathroom
  • Morning kitchen blessing (clear and wipe tables and counters and stove, reboot dishes, reboot recycling)
  • Clean the litterboxes

Today’s essentials took 1:10 to complete.  Exceptions include writing a quick email to somebody before I forgot, emptying the household trash cans (normally a weekly chore), the first time cleaning the upstairs bathroom in quite a while, and stopping the timer before balancing the checkbook (something I want to include in the future).  I think in the future the timed run ought to include the things I do before I eat (making coffee, walking A’Kos, handing out medicine to animals and eyedrops to Kender, feeding the animals, tending my altar) with the timer stopped while I eat.

This went really well.  Competition is good, and anything that gets the chores out of my way faster is a good thing.

Did I earn a knitting break?

Meltdowns

I’ve been saving up blog posts for a bit, making note of things I want to say but not finding the time to write the posts. This one caught me at just the right time, though.

This video recently came across my feed. It shows an adult woman having a meltdown, and her service dog doing his job of disrupting and calming her.

Normally, we think of meltdowns in terms of children, especially autistic or ADHD children. We think about how they look like tantrums and how to convince bystanders that they are not just the result of bad parenting. We think about what causes them, fatigue and overstimulation and pain and diet, and we work to modify the environment as much as possible. We have our service dogs for calming and disruption, and as parents we are always on the lookout in new places for where we can safely take our child when the next meltdown hits.

How many of parents fully realize that these meltdowns might not be something their children outgrow? I know a few spectrum children personally who show no signs of leaving meltdowns behind even as they approach 21 and beyond. How many of us think about how the world is going to deal with our adult children when they meltdown in public?

How many adults like me, who skated under the radar as children, realize what is going on when they finally hit their breaking point as adults?

It’s not a pretty picture. Autistic adults have been shot, tazed, and otherwise assaulted as if they were dangerous criminals when all they needed was a temporary reprieve from the assault on their senses or emotions. People who are already self-harming in a meltdown can lash out instead of calming if they are approached aggressively, and when you’re talking 250-lb man instead of 50-lb child, things can get out of control in the blink of an eye.

I was lucky. My first adult, “public” meltdown resulted in a security escort and a lifetime ban on entering the medical building where it happened. But I didn’t get arrested, and since then I’ve learned to just shut down when people are around, to wait until I can run and hide before letting it out. I focus on my kids, which gives me something that needs doing, that keeps me from having to look at anybody else, that keeps others from talking to me.

What if that office had arrested me instead of giving me a room to let it out and then letting me leave?

What about those who can’t hold it in until they can hide, who don’t have an understanding companion or an ever-needful set of children?

I know I’ve done my share of railing against phony service dogs. But not every little dog accompanying sighted adults is a phony. Some of them are there do to exactly what this dog is doing, to help calm and protect their owner until they are in control of themselves again. And you may never ever ever see these dogs actually do their job in public. Often just the presence of the dog is enough to help the person hold it together long enough to flee.

And if, one day, that seemingly-normal adult finally reaches their breaking point in public, that dog and its presence could be the difference between an escort and a death.

I Can’t See

I am autistic. To be more specific, I am a very high functioning autistic, which means that I don’t look autistic.  I pass for neurotypical most of the time.  The passing makes it hard to cope with, though.  Sometimes I wish there were some visible symbol I could have so that people would know what I am when they first approach me, but I don’t have a cane, or a wheelchair, or a service dog, or braces, or anything else that indicates that I might be anything other than what people expect.  So people expect their interactions with me to go a certain way, for me to respond a certain way.  Even when they’ve seen more of how I function, they still tend to go back to expecting me to function neurotypically.  And of course I get blamed for it when I don’t.

I struggled to come up with an analogy that might convey how I feel about this.  It’s hard precisely because it doesn’t really happen elsewhere, it’s not something that anybody would consider doing to a person with a visible disability.  The best I’ve been able to do uses blindness, since that is a visible disability that I have the most experience with (without actually being blind myself).

When a blind person walks into a room for the first time, say to join a club or a church, they might run into people they can’t see.  They might have difficulty identifying people when they only have a voice to rely upon.  They might have to use their cane to find their way around the room, to learn the map of the furniture.  If they do physically run into somebody, or knock over a drink while walking, or commit some other faux pas, of course they will apologize.  They certainly don’t intend to run people over, or to break things, or to make a mess.  They just can’t see where they’re going, they can’t see when they’re about to run into something, and bumps and spills and stepping on toes happen to the most mobile and independent blind adults.  It’s a functional aspect of not being able to see the world around them.

What generally happens when a blind person joins a new group is that people are solicitous.  Once they know that the blind person can’t see, they understand why bumps and spills happen.  They may make an effort to move out of the way when the blind person is walking around, they will try to warn them of things that need care such as open glasses on the table before them, or children running about on the floor, or a cat on the chair they’re about to sit in.  If not, that’s okay, too; the competent blind adult tries their best to use care in movement, and when mistakes happen they can apologize and carry on.

What if, instead of watching out for them, everybody in the room continued to pretend the blind person could see?  What if they kept showing pictures without explaining (yes, I know I’ve been guilty, but I do try), saying “Hi!” without attaching a name to the faceless voice, getting upset when the blind person runs into them, getting upset when something gets bumped or spilled?  What if every response was along the lines of “Why can’t you just watch where you’re going?”

As if they could just manage to see everything in the room and comprehend and interact with it visually if they just tried hard enough.

“I need you to see!”

This is how I feel interacting with other people.  Would you blame a blind person for giving up on having a social life, if this is what they always encountered?

In every social group I’m in, in every relationship, eventually I’m going to say and/or do something that royally pisses people off.  It’s inevitable.  It’s going to happen, because in social relationships I can’t always see where I’m going.  (To go back to blindness, a blind person knows they’re going to fall and run into things at some point, because they can’t see where they’re going.)  It’s the hallmark of autism all the way up and down the spectrum, having difficulty with communication and with social interactions, and it applies to the high-functioning Aspie end of the spectrum as much as it applies to the non-verbal, non-functional end.  But those of us on the Aspie end can pass.  We don’t immediately present as autistic, and we can even go a lifetime without ever being formally diagnosed by a doctor.  We’ve learned how to mimic looking folks in the eye or how to acceptably avoid it.  We’ve learned some required social scripts, how to say hello and goodbye, please and thank you.  We’ve (sometimes) figured out when it is not okay to talk about the things that really interest us, and we have a list in our heads of Things Not To Say Or Do (you know, like “don’t stare at her boobies”, “don’t talk first”, “don’t make the first move”, “copy the people around you in any situation”).

Much like a competent blind adult knows how to use their cane to get around, has lots of practice creating mental spatial maps, has learned special tactile and audio skills to help make up for the loss of vision.  They know to turn their head toward the person they’re talking to, that it’s not okay to rock or poke their eyes, how to tell if the pot of water is boiling or the cup is full.  Some, like my husband, do these things well enough that they can pass for being sighted, at least for a little while.  Nobody ever expects that this means a blind person is sighted, though.

That seems to be the expectation most people have for people like me, though.  That because I can pass for neurotypical, then any mistakes that I make are intentional and willful, just a matter of not trying hard enough.

And gods forbid I ask for help.  When it becomes clear that I’ve messed up somewhere, I’ll try to figure out how.  I want to know where I went wrong, so I can add to my list of Things Not To Say Or Do.  I want to know what I should have done, so I can add to my social scripts and perhaps avoid a problem in the future, should that particular situation ever come up again.  I won’t understand why my intention didn’t come across, any more than a non-verbal autistic understands why their caregivers don’t understand that this particular screaming fit means that they have a headache, but I will accept that the communication did fail.  But asking for help always makes it worse.  Asking for help pisses people off even more than the original offense.  They lash out at me, stop talking to me, yell and scream, tell me I don’t belong, ask me to please shut up and go away.

Imagine a blind person, after running into several people in a crowded room, asking for a little help in finding a seat, and being yelled at to just watch where the hell they’re going or get the hell out.

Hard to imagine, isn’t it?  Because nobody would ever do that to a blind person.

Yet it happens to me all the time.

Is it any wonder that I just don’t bother so much anymore?  Is it any wonder that I would rather just stay home than try to deal with people, stay out of online forums instead of trying to find community?  I’ve had trouble in doctor’s offices, in parenting groups, in offices where I work, in schools, in crafting groups, in religious groups, even with neighbors and friends who have known me for years.  No place is safe, I am never safe from that expectation that I should know better, that I should understand what I’ve done, that I should somehow be able to follow along in a dance I can’t see.

Is it any wonder that even high-functioning autism becomes a disability?

Is it any wonder that I treasure my husband so much just for being there for me, for continuing to stay by my side and loving me through every miscommunication and misread glance and gesture, through every misspoken word and misunderstood request between us?

Is it really such a terrible thing for me to ask for help when I can’t see where I’m going?

You Are Remembered

I’ve found in the past couple of weeks that it is hard to describe my relationship with Pat to others.  Some relationships you can encapsulate in a few words: my childhood friend, my grandmother, my next-door neighbor.  Pat was different.  She was a mother of a friend, but also a friend in her own right.  She was somebody I knew such a short time, but it felt like she’d always been there.  She came into my life through tragedy but stayed because of love and friendship, and I wish I had met her sooner than I did.  How can I describe that in only a few words?

In my own family, an odd set of circumstances meant that my father’s oldest sister and my mother’s mother, my aunt and my grandmother, were the same age.  As I grew up, I watched their lives go in drastically different directions.  My grandmother continued to paint and craft, making clothes and doilies and dolls and ceramics, but her health declined dramatically, and her last years were spent sitting on the couch and in bed, unable to get around on her own, as system after system in her body wore out and shut down.  My aunt, on the other hand, is still alive, riding her bike, hiking, camping, occasionally going back to the nomad lifestyle I admire to travel and visit friends and family.  She is so active, she walked out of the hospital just days after bypass surgery a decade ago and never looked back.

Watching these two relatives of mine grow old and approach the end of their lives in such divergent ways made me feel like I had a choice, to either stay strong and active, or stay indoors with my more passive crafts and have my body fail me in the end.  What a choice!  I’ve always said I wanted to be like my aunt, the Bicycle Lady of Kenya, physically strong and capable, able to live on the road out of a van and also able to cook a gourmet vegetarian Thai dinner from scratch.  But I wanted to be like my grandmother, too, continuing to make things with my hands, cooking hearty soul food and sharing stories and skills with my descendants.

And then I met Pat.  Here was a woman who embodied both of these ideals.  She was strong and active. She made me feel like a wimp every time I tried to work outdoors with her, as I would falter and give up after an hour or so, and she’d just keep going all day long.  She had all of the independence and survival skills I’ve always wanted to cultivate, and then some, growing and preserving food, gathering food.  I can see where Chris’ love for the outdoors and skill in making do originated.  She faced whatever came toward her head-on, making plans and making things work out.  She was always happy to share her knowledge, her skills, her home and her land, looking for ways to help others.  She was so unassuming, never wanting credit for the things she did.  She would show up at my house while I was gone, plant some pretties in my yard and my garden, and then leave, never saying a word.  Whenever she had extra of something, she would give it away, saying, “Here, take this, take this home with you,” and I at least could never say no.  She loved to make things with her hands, too.  She did painting, and she did quilting.  Her whole life seemed in balance to me, quiet and strong, passionate but reserved, active and creative, wise and knowledgeable in so many things.

I saw in Pat the woman I really want to be when I grow up.  I wish I had gotten more time with her, as we all do.  But she will live on in our hearts, in the heart of her husband, in the faces of her son and her grandchildren.  Pat’s strong and generous spirit will never die, for what is remembered, lives.

Apples and Oranges

You can’t directly compare conditions a hundred or two hundred years ago to today.  At first glance, this seems obvious, and yet I consistently see people doing this.  The comparisons are made when we talk about vaccination, obesity, infant mortality, childbirth methods, autism, child labor, and probably half a dozen other topics that I can’t grasp at the moment.  The argument usually goes like this:  “A hundred years ago, before we had x, bad outcome y happened.  Today, if we didn’t have x, bad outcome y would happen all over again.”

Sorry, it doesn’t work that way.

First off, when you talk about anything involving health, you have to consider the whole picture of health, not just a piece of it.  Absolutely anything and everything that makes us sick today is more survivable than it was a hundred years ago because of a broad spectrum of basic health care improvements, including antibiotics, good nutrition, basic sanitation, and an understanding of germ theory.  These four things alone probably account for 90% of the increase in longevity and the decrease in mortality across all age groups. Whatever happens to you, you are less likely to die of it now than at any point in history, period.

This means you can’t take some one advance and say that removing or changing it will suddenly throw us back into the dark ages of health care.  If women go back to planning to have all their babies out of the hospital, neonatal and maternal mortality will not climb back to 1900 levels.  If we stop vaccinating altogether as a society, children will not die of the measles and polio at 1900 levels.

Socially, culturally, we are not the same society that we were a hundred years ago.  We’re not even the same culture as we were in the 1970’s when I was born.  The level of acceptance for “others” in our society today is so high it would have been absolutely unbelievable back then.  Information is readily available to anybody in search of it, one way or another, faster, cheaper, more accurately, and more efficiently than ever before.  Low birth and death rates have led us to cherish every life more dearly, to care more about every individual.

You can’t say that if laws against child labor were repealed we would suddenly have children working and dying in coal mines again.  You can’t say that if hate crime laws were repealed we would have a spate of lynchings.  Society doesn’t function the same way now as it did back then.  Trying to make these arguments is no more intellectually honest than a conservative saying that if gays are allowed to marry that suddenly nobody will live in nuclear families anymore and Christians will be forced to live in polygamous marriages with dolphins (or whatever the last crazy argument on that one was).

We live in a chaotic world, a world full of thousands, millions, even billions of factors, all interacting in billions of different ways.  There are eddies and currents, whirlpools and waterfalls, as information, disease, human interaction, and evolution mingle.  One person can make a difference in the lives of millions of people, and yet sometimes millions of people believing a thing can’t seem to make a difference for anybody outside their direct sphere of influence.  Ripples expand, waves reinforce each other and cancel each other out.  The beauty in this chaos is that so many different things can happen, so many different ideas can be tried out, forces tested, evolutionary paths explored in nature and in society.

But in a chaotic world, the same conditions never exist twice, and the same action almost never produces an identical reaction.