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!

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.

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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?

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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!

EDS Hypermobility Type

I posted once about hypermobility syndrome after I first met with my current rheumatologist back in 2013, but I never followed up on it.  Now I’ve been living with the diagnosis and integrating it into my view of myself for almost three years, and because a couple of my friends have the same condition I feel like everybody knows what this is and what it does.  Tonight I was reminded that this is not the case, that as much as it feels like normal and common sense to me and my kids because we live with it, others still need to have it explained.  So here’s a fresh explanation, with some new insights.

I’ll say up front that my official diagnosis from the rheumatologist is systemic Joint Hypermobility Syndrome (JHS) with spinal bifida occulta and arthritis in my spine, hips, knees, and feet.  Her policy is not to use an Ehlers-Danlos Syndrome (EDS) diagnostic code unless she has a positive genetic test, which she generally doesn’t order because it’s expensive and doesn’t serve much purpose unless you have a dangerous subtype, and may just be a false negative if you have a mutation that has not yet been identified.  However, the clinical differences between JHS and EDS type 3 are minimal, and many doctors in the field believe there is no real difference.

My children do not have an “official” diagnosis at all.  My own rheumatologist cannot see my children because they are children, for liability reasons.  The nearest place we could go that would be familiar with this syndrome, especially in children, is in Ohio, and it just hasn’t been worth it to make such a huge effort and expense for a piece of paper.  There is no treatment for EDS, no cure, only awareness, the ability to better care for our bodies so they don’t wear out so fast, something to tell doctors and nurses before the anesthesia fails and the veins blow out and the belly incisions bust open.  After identifying so many of the same symptoms in my children, and especially after seeing them struggle with dislocated/subluxated joints and finding out at least one of them also has spina bifida occulta, I am feeling more strongly than before that seeking out at least the genetic testing might be worthwhile, both for genetic counseling for my children and giving them a better ability to anticipate how their bodies will react to things in the future.

All that being said, part of the point of this post was to provide an explanation for how EDS affects our bodies.  It is not limited to the joints, and it is not limited to extreme crazy contortionist tricks.  Here is a list of ways in which EDS affects my body (not necessary exhaustive, because there are so many that sometimes I forget some), and most of these symptoms I have now seen also in one or more of my children:

  • spina bifida occulta
  • frequent joint sprains and unexplained sore joints
  • random or easily produced joint dislocations and subluxations, including toes, feet, ankles, hips, shoulders, and jaws (I can dislocate my toes by getting out of the van wrong, my ankles by stretching, my shoulder by picking up a heavy bag, my jaw by yawning)
  • anesthesia that is ineffective or resolves (wears off) too quickly, because it leaks away from where it was placed
  • I love to eat salty foods, much saltier than most people like them, which is one way my body tries to keep my blood pressure from dropping too low.
  • orthostatic hypotension, or I almost pass out when I stand up because my blood pressure can’t adjust fast enough
  • I can crack my ankles just like I can crack my knuckles
  • a heartbeat that fluctuates with my breathing, with frequent episodes of palpitations and a history of unexplained murmurs
  • stretch marks on top of stretch marks, from just existing, from growing boobs, from growing into a woman, from having kids again and again and again…not one or two, but entire body parts completely covered in them
  • keratosis pilari, that bumpy skin on the back of my arms
  • severe nearsightedness
  • poor wound healing, with dehiscence in incisions when they should already be closed
  • incompetent cervix in pregnancy
  • being able to easily squat, being more comfortable sitting on the floor than in a chair
  • tendon and nerve issues like plantar fasciitis and carpal tunnel syndrome starting in my teens
  • severe recurring idiopathic headaches
  • pelvic organ prolapse
  • creaks and bumps when my joints move starting in my teens
  • poor circulation in my feet
  • Reynaud’s syndrome causing blood loss and pain in my hands and feet in the cold
  • constant back pain and tight muscles around my lower back
  • idiopathic blood issues, including thrombocytopenia (low platelets), petechiae (pinpoint spots of bleeding, especially after pressure on my skin like carrying a heavy bag), borderline anemia, easy bruising, and a tendency to bleed out in surgery
  • flat, pronating feet
  • early-onset of tissue paper skin
  • idiopathic mouth sores
  • reflux and irritable bowel syndrome
  • extreme sensitivity to stomach irritation from nSAIDs like Advil (which is why I make my own)
  • hard-to-place and blown IVs
  • permanent hair dye washes out in weeks
  • symptoms of Mast Cell Activation Disease (MCAD), especially dermatographia and other strange allergy-like reactions
  • stretchy skin with a velvety texture, especially in areas that are under constant stress or friction
  • severe, almost debilitating menorrhagia
  • translucent skin, so you can see all the veins

As you can see, this runs the gamut from weird but no big deal to things that can ruin your life (anesthesia failing during surgery can do that).  Sometimes paying attention to the little things, like that shoulder that keeps popping out during cheer practice, and taking better care can prevent total disability at a relatively young age.  Hopefully my kids can keep it going longer than I did.

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.

Kender and School

It feels weird to be talking about Kender going to school.  We’ve been homeschoolers for so long.  It’s all about what’s best for the kids, though.  In Kender’s case, right now, a group learning environment seems like the best choice.

Although Kender is still making lots of progress, he still resists being directed and guided in one-on-one play and learning.  This is part of what we are working on in his therapy sessions, along with other communication skills like talking about what hurts or what happened.  This resistance, though, makes it very difficult for me to teach him at home right now.  He doesn’t tolerate sitting down and coloring, playing games, doing calendar time, or any of the other activities I’ve usually done with my kids for preschool and kindergarten.

What Kender has shown that he can do, though, is to learn by listening.  He is also beginning to show an interest in playing alongside others.  These things are what make a group environment such a good idea for him right now.  He can participate or not participate in class activities, as he feels comfortable, but he will still learn just by being in the room, by listening and watching what the other kids do.

Kindergarten and preschool are also a great time for inclusion.  Kids in these classes have not yet learned about bullying.  They haven’t learned how to be really mean.  Instead, they are still curious and inquisitive, helpful and caring.  I wouldn’t want Kender to have to go through elementary school.  But kindergarten will be perfect.  He can learn about social skills and be included without being bullied.

The trick: Finding a preschool or kindergarten willing to accept a 7-year-old and treat him like one of the 4-year-olds.  Government school was right out.  Quite aside from my complete lack of faith in the school district’s ability and willingness to accommodate Kender’s special needs for blindness and autism, I’m fairly certain that they would want to place him in first or second grade because of his age, then pull him out for resource room activities and special tutoring.  This would completely eliminate the benefits of being in a group.  My next thought was that Montessori, with their philosophy of child-led learning and multi-age classrooms, would be a great fit.  I called four different schools in our area, but none of them would take Kender; they couldn’t deal with blindness and autism, and they didn’t want a 7-year-old who hadn’t already been in Montessori for many years, regardless of his developmental level.  The preschool program at our therapy center didn’t want him because he was about to age out, again disregarding his developmental level.

I had given up…when I remembered the daycare at Jackson, where Brian works.  Sure enough, they have programs all the way through first grade, and they had a few openings in their kindergarten classes.  And they were willing to take Kender!

So today we made a visit to the classroom to see how Kender would do.

It may have looked very different to people who don’t know Kender.  But to me it looked like a great success, and made me excited to see how this fall goes.

Kender spent most of the first hour lying on A’Kos.  The room was close and crowded, and the other kids were constantly hovering around, wanting to pet A’Kos, asking questions about Kender.  Near the end of free play inside, Kender finally got up and walked around a bit, exploring around the tables and chairs.  He even helped put away a few things as the class got ready to go outside.  Outside, he was again quiet for a long time, huddling on the play structure and listening.  But eventually he got up and started exploring.  He rode on two different trikes, carried a hockey stick around and banged on the ground, and played with an empty bucket.  He interacted with one of the teachers a bit, accepted redirection and occasionally responded to questions.  When outside time was over, he helped pick up a little, and he came to wait in line with A’Kos before going inside with the class.

Anybody who knows Kender knows that was a great success!

We left at that point, with the other kids sitting down to lunch.  On the way out, I spoke with the director a bit.  They seemed very comfortable with allowing the classroom teachers to handle A’Kos (after some training from us, of course), and also with allowing me to add Braille to the classroom and train the teachers a bit on how to teach a blind child.  All-in-all, they were hugely accommodating.

Later, Kender told his dad and his sisters about his day.  He said, “I went to school.  I went to kindergarten at school.  I played with blocks.  There were bubbles.”  He said he had fun.

I haven’t asked how much this is going to cost yet, but we’ll find a way to cover it.  I think this is going to be great for Kender!

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?

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.

What’s It Like?

Another post today about living with disabilities reminded me of a question somebody asked me last night:  What’s it like to live with a blind husband and all these blind children?

First off, the connection with the article:  We see a lot of this attitude around our family’s blindness. People think blindness has to be all-or-nothing, not realizing that “high partials” like my husband and children are still disabled, still can’t drive or perform many jobs, still have to use a cane to get around safely, still have to use adaptations of all sorts in order to function.  I’ve said before that sometimes it seems like it is simpler to deal with being totally blind, because there are fewer choices and decisions to make.  (This is not saying it’s easier to be totally blind than partial, just that it’s easier to select the appropriate accommodations.)  You need a cane that you’ll be tapping, you qualify for a guide dog, you read braille and use audio.  For partials, there are so many shades of gray and so many decisions to make.  Can he read print? Does he need braille as well?  How about a CCTV for reading regular print?  Does he qualify for a guide dog (i.e., is he blind enough)? Does he need a cane to walk normally?  What cane technique, tapping or constant contact, cross body or swinging?  Which school materials should be made large print, which should be brailled, which can be used in audio format, considering that braille and print text are processed differently by the brain than audio?  Can he see colors? Can some functional improvement be achieved through exercises?

All of that is just not on people’s radar.  You’re either blind or you’re not.  So I can tell my son’s cheer coach that he’s legally blind, and yet because he looks and acts like a normal kid she puts him on the back row where he can’t see what the assistant coaches are doing in the front. We get harassed for using the handicapped parking even though my family might not be able to make it safely from the store to the car if we were farther out.

But really, that’s neither here nor there.  What’s it like living with blind people?  I don’t know.  What’s it like not living with blind people?  I don’t have much for comparison.  I’ve been with Brian since I was 15 years old.  It’s like asking Brian if he sees things blurry.  He’ll say no, of course not, my vision is perfectly clear and always has been.  He has no point of reference for “blurry” because his eyes have never worked the way yours and mine do.  I can guess by taking my incredibly strong glasses off, but it’s not the same.  You could come over here and try to do my job for a while, but you know you’ll get to go home soon.  It’s not the same.

I don’t know what it’s like to only have one child, either.  I went straight from zero to three, with all the difficulty that comes of having three babies at once.  It’s not like running a daycare, because they don’t go away at night.  It’s not like having twins, because you don’t have enough arms, enough boobs, enough parents to go around.  It’s not like having children close together, because they’re all teething at the same time, weaning together, learning to walk together, learning to climb out of bed in the middle of the night together, there’s a huge difference between 30 seconds apart and 9-10 months apart.  Part of the reason we had more kids was because I wanted that experience of having a baby, except I still didn’t get it.  I got to have a baby while having more kids who were older and still needed attention.

What’s it like around here?  I’m the only driver for eight people, including the other adult who works and supports our family financially.  I’m the only one who goes to all the doctor’s appointments, the one who is responsible for taking notes and remembering all the things doctors A and B said so I can tell them to doctor C and therapists D and E, because I can’t get ABCDE to sit down at a table together, ever.  I’m the one learning braille and cane technique in more detail than I ever needed as a mere wife, so that I can be the one responsible for making sure all my kids grow up to be productive, independent adults.  Nobody else is going to do that for me.  I can’t trust the government to do it for me.  I’m the only adult who can see all the dust bunnies in the corners and the flies flying around that keep returning and the mold in the shower stall and on the windows and how warped the boards in our porch are getting and all the weeds in the yard.  What people don’t see or notice, they don’t tend to care about.

It’s fucking hard, that’s what it’s like.  But you know what? I’d probably be bored anywhere else.  I’d hate working in an office, working a high-paying job just because of the prestige or money.  I’d hate hanging out with the frat people I drive around in my car on the weekends.  They’re not my people.  My people are right here around me, disabled, magickal, hippie, alternative, everything not mainstream, not normal.  That’s what my life is.  My life is not normal.  Sure, it could be easier, and I’m always looking for ways to improve.  But I like my life this way.

Transformation and Perspective

One day last week, while hiding in the coat closet, Kender discovered our old vacuum cleaner.  It’s been hiding there for many years, gathering coats instead of dust.  He decided this was going to be his new toy, and he pulled it out, hauled it to the hallway, and plugged it in.  Our first response was to take it away and try to hide it in the basement.  That did no good.  Every day, Kender goes down and finds wherever we’ve hidden the vacuum, pulls it out, and tries to haul it up the stairs, spilling the cord behind him.  Step by step, he heaves and tugs and eventually lugs the hefty machine to the top of the stairs.

Usually somebody stops him somewhere in this process, tells him no, and returns the vacuum cleaner to hiding.  Today, though, he made it all the way to the living room and found an outlet to plug it in.  I came out of the shower to find him happily sitting on the exercise bike, turning the vacuum on and off.

So I let him have it.  A couple of times today I went over and tried to show him how to vacuum properly, putting the beater bar against the floor and moving it back and forth, picking up extension cords and large pieces of trash that might be in its way.  Who knows? I thought, we could end up with a cleaner house.  He went along for a little bit, but always went back to just holding the handle sideways, finger on the trigger.

Did I mention that it is an incredibly LOUD vacuum?  This did nothing for the terrible headache that left me whimpering for a chunk of today, in pain the whole day.  I didn’t want to do anything today, nothing at all.  But I would settle for knitting in front of the TV.  So I turned that into an opportunity, challenged the kids to finish morning chores, and rented a documentary for us to watch.  Obstacle successfully converted!

Watching TV did require getting Kender away from the vacuum.  This meant our movie was continually punctuated by alternating screeching and very quiet and polite request to vacuum more.  We got a brief respite from that when Kender found the blueberries in the fridge.  As soon as the movie was over, Kender was back at the vacuum, happily making lots of non-screaming noise.

While dinner was cooking, we tried to pry Kender away from the vacuum again.  I got out a loop loom that came with our last Oak Meadow shipment and never got used, wondering if I could interest Kender in stretching the loops across the frame.  I netted a Jarod instead, while Kender huddled in a chair and fussed.  Once Jarod was off and running with the loom, I made Kender a deal: First we would read a book, then he could vacuum.  He screamed about that a few times, but then he did go get a book to read.  He screamed when I sat down to read it, but then he listened to the rest of the story.

And then he got to go vacuum.  He didn’t even want to come back into the dining room for dinner, and once we did get him to sit down, he had to take a couple of vacuuming breaks during the meal.  He’d get up and run into the living room, we’d hear the vacuum turn on for a few seconds, then he’d be back at the table, saying, “Thank you, Dad, this is a good dinner.”

When we announced bedtime, Kender went with a minimum of fussing, only asking me to please put the vacuum away for him.

I got to the end of the day feeling a little useless because of the headache and accompanying listlessness, but what did I really accomplish today? I took a shower and got dressed, I got everybody to watch some educational TV that actually sparked some good discussions, I used one of Kender’s obsessions to get some reading into him, I got Jarod started on a new craft, I got new tires for the van, and I saw Brenden’s last wrestling match of the season.  Not bad, really.

I don’t want to go

This post is going to be full of whiny-ass TMI and cussing.  So you don’t have to read it.  Not that I have a big following anyway.  This is mostly a place for me to vent, for me to structure thoughts and arguments in a longer format than a facebook post, for me to store and share tips and recipes and things that my friends ask me for.  So you don’t have to read this; I just have to post it.

I have a doctor’s appointment tomorrow morning.  And I don’t want to go.

I didn’t even want to make the appointment.  I’ve put off making this appointment for a long time, years maybe.  Because I think I know what’s going to happen.

Nothing.

I’m going to go in and whine to the doctor, and complain about how terrible I feel.  The doctor is going to say, “Oh, no!  We can fix that.  We’ll just run some tests to confirm the treatment first.”

Then the tests will come back perfectly normal, and nobody will ever call me back.

And I’ll still feel like shit.

Maybe the doctor will even panic or follow some panicky protocol and say, “Oh my God, you need to go to the hospital right now and be admitted for tests!”  And I’ll have to completely upend my life, eat shitty hospital food and be denied my treats, all to hear the same results.  Tests are normal, you look perfectly healthy.

And I’ll still feel like shit.

I’ve tried for a long time to figure out what’s wrong with me.  I’m still fairly convinced it’s the location, but there’s nothing I can do about it.  I tried seeing doctors when we lived in Washington, D.C.  I had irritable bowels, I had days where I was so tired I just couldn’t get out of bed, days when my skin was so sensitive it was like having a sunburn and even a breath of wind hurt. I ended up with a chronic fatigue diagnosis, which is a nice way of saying fuck off, because I didn’t have pain at enough fibro trigger points.

The only time I ever registered abnormal on a test was the blood tests for PCOS.  Even then, I had to go through a nice round of “shut up and just do what we say” and had my lovely year of being ignored in 1999 before a doctor actually gave me the medication that fixed it.

I tried seeing doctors when I started getting sick again after moving to Michigan. I had diarrhea that would go away when I went back to Texas for a visit. (Incidentally, so did one of my kids, location-specificity included.)  I would get random numbness and tingling in my feet.  I had headaches.  I would feel like I had the flu or had been hit by a truck.  I would feel like I needed to stretch my insides, all my insides, inside my face, inside my joints, everything needed to be stretched and rubbed and squeezed constantly.  I ended up with a fibromyalgia diagnosis.  Another way of saying fuck off.

In D.C., I gave stool samples, took blood tests.  I’d go in for terrible headaches, and something would fix them once but not the next time.  I’d go in because I had so much trouble swallowing I was choking and couldn’t eat anything solid for weeks, and I’d be left sitting in waiting rooms, sent home with antidepressants, whatever.

Because there’s nothing clinically wrong with me, so I need to shut up and fuck off.  Kind of like when I went into labor with the triplets, but the machines didn’t pick up the contractions, so I must not be in labor, here’s some sedatives so I’ll shut up and go away.

In Michigan, they seemed to try to pay more attention.  I’ve had MRIs for multiple sclerosis, nerve conduction tests, full in-patient cardiac workups, and so many blood tests you can see tracks on my arms.  Everything always comes back normal.

They put me on Topamax once to try and dull the fibro pain.  It didn’t make all the pain go away, but it did take away my ability to feel things like carbonation, so all the soda tasted flat, and I didn’t want to eat anything because I had absolutely no appetite, no sense of being hungry.  I stopped taking it when we went on vacation later that year because I wanted to enjoy my food, and I felt fantastic while we were gone.

They put me on Cymbalta once, the year before I had Kender.  My mother said later she was scared for me because I seemed like I had no emotion anymore, but I didn’t notice any difference in myself.  I cared so little I put the kids into the government schools for a semester.  I sweated like a pig all the time, all day every day, soaked through everything.  When I started developing a tremor on top of everything else, I stopped taking it.

I still have the tremor.

After I had Kender, I developed costochondritis for the first time, but because I said “chest pain” I ended up in the hospital for two days with my newborn, getting cardiac tests and eating shitty food with no coffee.  They said I had the healthiest heart they’d ever seen.

So I just don’t mention chest pain anymore.

My current rheumatologist diagnosed me with hypermobility syndrome and spina bifida occulta but says she can’t put EDS on my chart without a genetic test that she won’t order, so as far as every other doctor is concerned it’s just another fuck off, they’ll just keep ignoring me like the anesthesiologist ignored me and let my anesthesia completely wear off in the middle of a c-section. (And the dentist wonders why I won’t let her take out the rest of my wisdom teeth.)  She runs blood tests on me every 6-12 months looking for markers.  She ran a ton of them a couple of months ago when I showed her my new dermatographia and the ulcer I’d worn inside of my nose from sneezing and blowing my nose so much every damn morning.  She looked for all the inflammatory markers, c-diff and IgE and Sjogren’s markers and I don’t know what all.

All normal.  Never even called me to follow-up.  Fuck off.

I’ve tried a bit on my own with diet.  I’ve tried going gluten free, wheat free, dairy free, once even corn and soy and peanut free, tried the specific carbohydrate diet, bought a raw milk share, made my own yogurt.  Not much help.  The only thing that consistently makes the diarrhea go away is leaving the state.

I’ve done exercise, gotten to the point I was running 30+ miles a week and training for a marathon, until feeling like I had two sprained ankles stopped it.  I haven’t done much besides strength training since then.  Running was so easy, just head out the door.  Everything else takes so much more time, more planning, more equipment.

I know I’ve gained weight.  I’ll probably get to hear about it tomorrow.  Thing is, I started gaining weight while I was running and doing strength training and eating gluten-free.  Nothing but weight gain, more and more.  The last time my scale broke, I declined to replace it.  What’s the point?  If diet and exercise make me gain weight, I really don’t want to pay attention to it anymore.

Then there’s the ulcer I’ve had for the last year and a half, probably caused by all the ibuprofen I was talking while I tried to avoid my sprained ankles and keep running.  The pain from that has to ratchet up to intolerable levels before I think to take another round of Prilosec, because the constant chronic pain from other sources makes a background noise that’s hard to penetrate.  People without chronic pain don’t understand how that works.

So why am I going in tomorrow?  My typical day starts like this: I get out of bed, make the bed, and head for the bathroom.  Sometime between getting out of bed and getting upstairs (it never starts in bed, I have to wake up first), I start sneezing.  I’ll probably sneeze 10 or 15 times, until snot is running down my face.  My bowels will turn on, too, and I’ll be having diarrhea while I’m sneezing.  I’ll sneeze, blow my nose, and be in and out of the bathroom for at least an hour.  The rest of the day, I can breathe through my nose, except for random times when I’ll start sneezing again.  Or maybe it will be coughing, I’ll feel like I’m actually itching inside my lungs and start coughing uncontrollably.  Either way, I’m going to pee myself, because all the constant coughing and sneezing over the last six months has completely finished destroying my pelvic floor.  I’ll have diarrhea 3-5 more times, too.  Most of the day I feel like I’m being impaled through my ass.

Yesterday, I started bleeding from it.

So fine.  I’ll go in to the doctor.  But I don’t want to go.  I don’t want to try and explain all of this again. I don’t want to take more tests and see them come back normal.  I’d rather just sit here and be miserable, than go in, complain about being miserable, and get another fuck off.  I’m just tired of it.

I don’t want to go.