Sorry? Yeah, for a Lot of Things- but Not for Being Alive, or for Being Autistic

It’s bloody amazing what people will shame parents for. It’s also scary that the reality of parents being able to screen out and dispose of any less than perfect embryo is quickly coming to pass.

I gotta ask the ethical question: if my parents had known how jacked up I would be mentally and physically would they (should they?) have terminated my life then and there?

Now, I have to state this choice is merely hypothetical in that my parents both come from ultra conservative Christian traditions that are vehemently pro-life.

Abortion, infanticide and genetic selection are concepts that they find to be morally repugnant and on the same level as murder. Even if they had not held that particular view of life and the hand of God in it, in 1968/9 genetic testing, ultrasound and all those technologies were unknown. You got what you got back then. Lucky me. They didn’t have the choice, (wouldn’t have taken it if they did) and were handed a rather dismal result of the genetic crap shoot.

I sort of feel bad for that. I am the third daughter of three for a man who wanted but never got a son, and a defective, sickly one to boot.

So if parents could know (and sooner rather than later the technologies will be in place) if their unborn offspring will be genetically “defective” or anything else they don’t want- wrong hair color or gender or height, the list goes on, how many would rationalize their way to termination?

How many already do? (How many perfectly healthy, normal children are sacrificed on Molech’s altar of “convenience,” but I digress.)

Recently I responded to a discussion on a forum for the autistic community regarding someone commenting to an autistic boy’s mother that she was “sorry” about the child’s autism. I’m sure my Mom’s friends had some of the same remarks to make about me.

They knew I was different and had multiple issues – I know the constant freakouts due to anxiety and the constant doctor visits and trips to physical therapy weren’t fun. They knew I was not and would never be a normal child. No one knew why I was so screwed up, as I wasn’t diagnosed as autistic until I was 35.

Nobody wanted to deal with me when I was a child and I don’t blame them. I was a hot mess of anxiety and insecurity. If I am sorry for anyone I feel sorry for them- my parents, teachers and health professionals who were clueless but had to deal with me- terrified and sickly as I was- anyway.

I had to think about what to say from the other side, from the perspective of that child who lives life as the deer in the headlights.

This is what I replied in the forum:

I’m autistic and have lived with it for 50 years. I don’t know anything else. I have always had a profound and deep anxiety and vulnerability because the rest of the world knows I am wired differently and I don’t respond or interact in a predictable manner. To make it worse, in the 1970s and 80s when I was growing up there were scarce health or educational resources for people like me. I am hyperlexic and was advanced in reading and academics, but was hopelessly socially inept. I have very profound gross motor deficits which made me an easy target for verbal and physical abuse- first by my older sisters and their friends, then by the kids at school. Teachers did not want me in their classes because they didn’t know what to do with me. I hid in books and music and did what I needed to do to get good grades and stay under the radar.
My parents imposed strict standards of conduct and behavior with the thought that if I looked normal and acted normal I would be normal. I learned to script and act, especially after being backhanded not once for “staring” or for “not giving so and so friend or obscure relative of Mom’s” a hug. Mom meant well, but the forced interactions only turned up the volume on my distaste for physical contact. Eye contact is still uncomfortable for me and the whole concept of body language is simply vexing. I still struggle to read people.
I have been gainfully employed since age 16. I have a business degree and have been a parts manager, and a fixed operations manager in various car dealerships. By age 30 I had serious health issues due to anxiety: uncontrollable high blood pressure (still takes high doses of 6 meds every day to control) and severe panic attacks. At age 35 I was finally diagnosed as a high functioning autistic and got proper treatment for the anxiety and depression and panic attacks. These issues do not “go away.” Meds help (Prozac and Catapres) but it’s management, not a “cure.”
All this being said, I would not wish my wiring and all the physical and mental health issues that go with it on anyone. Even so, I cannot imagine being any other way. My particular manifestation of autism is a double edged sword. I see and experience the world in ways others don’t and can’t understand, but I miss much and can’t experience the world like the “normals” do. I thank God my son (age 28) is neurotypical and that he doesn’t have anxiety or the motor and visual deficits I have. He sees the world in a way I can’t. This being said, I have still had and continue to have a full and accomplished life by the grace and mercy of God. I am not sorry for the way I was made even with its disadvantages and challenges.

I still have to ask a valid question (again playing devil’s advocate.) Is my life worth the aggravation I imposed on others?

That’s the question at the heart of eugenics. Which people are worth the investment of resources and which aren’t?

If the traditional Christian teaching that the humanity and worth of an individual begins at conception is edged out by the rationalizations of the various Molech worshippers- whether the altar is one of convenience or of genetic imperfection, then whose lives are valuable and whose are not?

Is my life less valuable because of the way I am wired, or even because of the fresh hell it has to be to try to raise an autistic child?

It’s already considered “acceptable” among many to abort children with Down’s Syndrome because it can be identified via genetic testing. In some countries almost all Down’s children are aborted, even though people with Down’s can live happy, fulfilling and productive lives.

Either we believe that life is sacred even when it is imperfect or frightening or inconvenient or we risk losing our humanity.

The reality is that the human condition includes suffering. Not that we should strive to cause more, but that our attitude should be that people’s lives are worth the aggravation and worth the investment.

Today it’s seen as a travesty if a child is conceived at an inopportune time, or if he or she is the wrong gender or he or she has certain genetic faults.

Where did we get the hubris to think we were in charge of the process?

I’m not sorry to be alive. I’m not sorry I’m autistic. I am sorry that the world is coming to such a pragmatic and utilitarian place that we fail to value life even in its more challenging forms.

Changing Spheres, and Back to Everywhere and Nowhere

It’s been awhile since I have been here.  So much has happened since my last post. 

I’m finally living in my grandparents’ old house.  It feels like home, and I haven’t been home in a long time. 

I thought the trains would bother me, and maybe they will when I can turn the air conditioner off at night.  I do hear them above the A/C, but more as a backdrop rather than a theme.

Jerry is terminally ill, permanently disabled and all that.  The pulmonary fibrosis is only getting worse.  He lies in that bed with the oxygen box on alternately sleeping, then barking orders, often unintelligibly. 

I don’t know what to do.

The move here was horrible- Jerry wanting to hang on to every worthless piece of crap, and me just wanting to snag the essentials and get him the hell out of there.  I couldn’t keep everything, and with the limited amount of time and help I had it was surprising it went as well as it did.  

I am setting myself up for living alone which is almost a comfort when Jerry has his explosive coughing fits- and irrational fits of rage. He is often positively evil to me, and I don’t know how to respond.

It’s getting creepy being around him.  

And even in the midst of this I have been most pleasantly surprised by the chance appearance of an old friend from the very distant past.

He is not the old friend/ former paramour that I have obsessed about for the better part of 20 years and whom I pretty much have written off. He’s someone who has never been on my radar screen until now, even though I’ve known him casually for the past 35 years or so. 

Here’s to old middle school admirers who I never knew I had.  When other guys were chasing my oldest sister he was watching me from a distance.  Fun to find out after all these years.  And even now it is oddly satisfying to hear a man say that,”fucking your sister would be like fucking a fence.”  I had to be catty and add my thought that he would have had to tie a board across his ass to keep from falling in the abyss.  Comedy is indeed the flipside of tragedy.

I am both pragmatic and cynical enough not to get my hopes up. I have said it forever that when Jerry dies I won’t seek a replacement, but I won’t turn down an upgrade. 

Not Like the Others…Autistic Kids Will Be Autistic Adults

not_like_the_others.jpg

I have shared some insights on what it is to go through life as an autistic person from time to time. It’s funny because there is so much being said and done about accommodating children on the ASD spectrum but there is next to nothing said about what happens to these children as they become adults.

I sincerely understand what challenges autistic kids go through and what sheer hell growing up on the spectrum is, especially when you know you don’t belong, and no one, especially your own parents, knows what to do with you.

In their defense, they tried. Doctors had no answers. All they could say about the 2 year old who could read the dictionary but did not want to be touched, who was terrified of anyone who was not an immediate family member, was plagued by night terrors and screaming fits, and could not walk or run properly without falling, was I had “congenital gross motor deficits.” Physical therapy for my gross motor deficits was nominally helpful, as was vision correction. I am coordinated enough to drive a manual shift car and walk across a room without falling. I eventually got to where I could ride a bike and rollerskate, but much later than most kids and not as proficiently. Nothing anyone could do could assuage my anxiety and social ineptitude. I have worked with psychologists and counselors (some good, some bad, and some positively abysmal) but to this day I still struggle with both anxiety and social ineptitude. I have had to build my own roadmaps and navigate my own way.

Medication (Prozac and Catapres, prescribed by a one time family doctor who had some understanding of anxiety, depression and autism) and educating myself have been helpful in this endeavor, but there is no “manual.” There simply isn’t much help out there for people like me.

I had to figure out how to script, how to mask, and how to put up a good front to survive. It’s good that the bullying and mocking isn’t as widely tolerated (and sometimes even encouraged) as it was in my youth. Perhaps there are ill-coordinated, awkward, badly dressed, terrified, myopic, autistic girls like I was who don’t get thrown in the bushes or tossed head first into the trash cans every morning at school. That would be a start.

However well intentioned early intervention and active assistance for autistic children may be, the challenges and the social dystopia don’t disappear when one turns 18. If anything, life becomes more painful and complicated and isolated because there is a dearth of help or advice for autistic adults.

I’m 50 years old. I grew up in a poor backwater town where educational resources were sparse at best. On my first day of second grade the teachers were arguing in the hall because neither of them wanted me in their class, and both claimed that the principal had promised each one I would not be in either teacher’s class. Eventually they came to an agreement, in which the teacher with the least seniority had to take me. I am hyperlexic and could read before I was two years old. The teachers in elementary school were intimidated by my vocabulary and reading ability. They didn’t know what to do with my constant freakouts- like when bees or wasps would fly in the room and I would lose it in terror at the sight of flying insects. They had no idea what to do with me, and in retrospect I can see that my mere presence freaked them out. I don’t blame them. I wasn’t normal. I didn’t look normal and I didn’t act normal. I hated (and still have trouble with) maintaining eye contact with people. I don’t like being touched.

I have no explanation for my reading ability or the compulsion to read everything I could find in print, but I am thankful that I was verbal at a young age. I was probably spared a great deal of injury and abuse simply because I could speak out to some degree.

Even though I was verbal and quite literate very early, I still have issues processing emotions and making my needs known- or even knowing whether or not my needs are valid or appropriate. My constant and intense anxiety (which has not gone away with age) makes it difficult for me to communicate when I am stressed. I was easily intimidated and was routinely beaten up by my older sisters and kids at school. I was an easy target. The terror, insecurity and reticence to speak out or to defend myself remains.

My own mother would backhand me for “staring” when she thought I was too focused on someone or something, or for being “rude” for not hugging and kissing on people who were her friends, but who I didn’t know from Adam’s house cat. Physical contact of any kind is uncomfortable for me unless it involves a close family member (and then only in certain situations)- or a dog. My aversion to physical contact has gotten even more acute with age.

To make my childhood even more fun I had chronic health issues-including constant respiratory infections and a bout of rheumatic fever that has led to heart arrhythmia, joint damage and constant pain. I have ongoing difficulty with spatial perception which I am sure contributes to my poor gross motor skills.

On the plus side I have managed to stay gainfully employed since I was 16, my son is thankfully neurotypical and doesn’t have my wiring issues. But life on the spectrum is different. It’s hard to know where you stand with other people.

William Shakespeare once wrote,“All the world’s a stage, and we are merely players.” This is so true for me when my every interaction with other humans must be carefully analyzed and scripted, and even then I am terrified of being inappropriate, using language that doesn’t resonate with my intended audience, and sending the wrong body language. To make it worse, when I’m tired, sick or stressed, my ability to script and filter goes right out the window. I am not normal. I can put up that front, but it has a very high cost. The older I get the more maintaining the “normal” facade exhausts and depletes me.

I understand I am the one with the disparity and I am the one who has to be accommodating and I have to adjust. No one is going out of his or her way to make my life easier. This world wasn’t designed for people like me.

At my age some of my idiosyncrasies get a pass. I dress how I want for the most part, and can decline most social activities outside of work that I deem stressful. It’s a mixed bag.

I wouldn’t say that being wired the way I am is easy but then again it’s the only way I know. I still have more questions than answers.

A Dearth of Reference Points, February Funk, and Wisdom from Dante

 

winter miseryIt’s February again.  That shortest month of the year, and the month in which the most people die. I think people just give up in February.  Christmas is long over (not that I am a great fan of the holiday hype,) and winter seems to just keep hanging on.  Most people are still paying for the crap they blithely and wantonly purchased for Christmas, that the kids have either broken or gotten bored with already. If you’re going to go, why not now? All hope abandon, ye who enter here.

That is a morbid thought, and I am no stranger to morbid thoughts.  I am always pulling worst case scenarios out of my imagination.  I should write horror movies, or at least get to narrate a guided tour of the Mütter Museum.  (I should get to actually go to Philadelphia to see the Mütter Museum…it’s on my bucket list.)

This morning’s drive was particularly sucky.  40-50MPH winds combined with temperatures in the low 20s and snow squalls meant that not only was the car being blown around, but there were little patches of ice hiding beneath that blowing snow.  I got here OK and with little incident, but some jackwagon in a Jeep Wrangler bought a trip to the ditch, likely arising from the erroneous assumption that 4 wheel drive makes one invincible.

Days like this remind me of my own fallibility and mortality more than I would like. Yes I know I screw up (a lot) and that every passing day I’m (to quote Pink Floyd’s song, “Time”) one day closer to death.

Days like this remind me of how not normal I am too.  Maybe it’s the overwhelming fatigue, or the inevitable joint pain that accompanies a low barometer, but I suspect it’s something deeper than weather. I went to the Dr. just the other day and my labs and such are mostly normal, so I probably don’t have any additional health failures. Even so, I am so tired I could sleep for weeks.

Maybe I am still guilt tripping.  Call it survivor’s guilt or maybe worse.  It’s not right to feel as if a weight has been lifted from me.  I feel like I don’t deserve a normal life…and maybe it’s not.  I don’t have a clue what “normal” is, nor have I ever had an accurate frame of reference and it scares me.  I don’t know what I am supposed to feel.  Then again, feeling anything always seems foreign to me.

I needed an extended sabbatical a long time ago but for various reasons that wasn’t able to happen. So I have to take bits and pieces of mental rest and reflection where I can get them.  Sometimes drive time is good for that.  Not lately, because driving is stressful when the weather sucks, but sometimes. I should have a Cougar Nap Saturday coming up and I will take advantage of that if I can.  If I take a few hours to just nap and watch reality TV (Botched is a good one, or The Incredible Dr. Pol, if I am in the mood for watching farm animals) on a Saturday, who can blame me?

I do need to set up a time (probably next Saturday) to get my oil changed and tires rotated, or I might arrange to drop the car off one day next week and drive the truck.

I am not looking forward to my birthday, which I hope most people I know will overlook. Usually they do because it’s at the end of February, when the winter funk and the it’s-not-quite-winter but-definitely-not-spring blecch season is in full swing in Ohio.

I think I might decide to set up some sort of weekend getaway sometime soon.  Maybe.

And it is quite OK to forget my birthday.

 

 

Beauty and Scars, Sacred and Profane, Meaning and the Depths of Faith

I find it hard to imagine the innocence and the uncertainty of being a child bride. Both times I got married I had that horrible sense of what the hell am I getting into and both times my instinct was right. I should have ran both times.

Granted, ball and chain #2 was an improvement over #1 but not by much. Jerry was an alcoholic. Admittedly he was functional, and could be a great guy- when he wasn’t butt drunk. Most of the time when he wasn’t at work he was butt drunk. Then the games began. He could be destructive, verbally abusive and I did way too much enabling and covering the consequences of his drinking and irrational behavior connected with it. To make it more awkward and regrettable, Jerry spent the last four years of his life terminally ill, which didn’t do much for his outlook, his behavior, or for me wanting to be around him. He was unpleasant, demanding, clingy, and often nasty before he got sick, and the sicker he got the nastier and more clingy he got.

It sounds cruel but it got creepier and creepier being around him. He wheezed and coughed constantly and gagged all the time- the unfortunate side effect of pulmonary fibrosis. What breath he could get he spent barking orders at me. Sometimes he was downright cruel and went on and on calling me bitch and other foul epithets. Toward the end he couldn’t drive anymore. Just going to the bathroom or showering was a major accomplishment for him.

The sucking sound of the oxygen box was creepy- I didn’t have the heart to turn it off even when I knew he was dead. I asked the paramedic to do it. The room smelled like an unwashed old man. I sort of felt like the little kid in Stephen King’s short story “Gramma” where Gramma died when the kid was alone with her, and Gramma was demon possessed.

One fine morning – like I knew I would-I wandered in his room and found a corpse. The worst part of that is I didn’t know how I would react when that happened. I didn’t want to touch him out of fear of…well I read way too much Stephen King in high school… but my major irrational fear was that the cops would think somehow I killed him. Sins of commission? Omission? Should I have called the squad the night before when he wanted to come home from the Moose early? I sort of anticipated it, and something had told me his time was short that night, but it was still surreal at 5AM just dialing 911 and telling the dispatcher, “I think my husband’s dead.” That is a bizarre thing to do.

I never felt so alone. Usually I am fine with solitude and prefer it, but not in the same space with a corpse. Waiting on cops and paramedics. Because paramedics are the Ones Who Know Dead. They even have special equipment to verify death. Who knew? Who wanted to know?

Do I guilt over sighing a huge sigh of relief that it’s finally over? Sometimes I do. Not much so far. I wonder long term if I will handle it the way I usually handle things emotional- with a 20 year delay?

In a lot of ways I feel guilty because I stayed with him long after the love had gone- and his illness (over which of course he had no control) made being around him even more repulsive. I do feel bad about that. I went through the motions. I tried to do the right things for him but it was sort of like when little kids hold their noses when forced to eat things they find to be gross. I served him from a sense of inward duress. Love is indeed a choice but when love is gone only duty and guilt remain.

I think he knew I was only there for him out of pity and duty. I was, and I feel bad about that.

Mourning is a weird thing. It seems pathetically selfish of me to mourn the 20+ years I spent with a man who loved me- albeit in a twisted and sadistic way at times. Yes I mourn wasting the better part of 20 years being treated like trash and living in fear of the next tirade. And I feel guilty for admitting it.

All this comes back to faith. Did I fail? Yes I did. Was I perfect or even good? No. I have no right to complain and every obligation to confess my sins and lack of love to God. I can only thank God for His mercy.

By faith I know God forgives me. The scars remain. The fear persists. Even though I know I am forgiven I still have anxiety. I still believe…but I call on God constantly to help my unbelief.

Sometimes I feel guilty because my life is better now. As if I should want to put on a hair shirt and attempt to do useless penance.

Is there beauty on the other side? Yes. Am I still cynical and scared? Yes. I am still learning that what I once thought was normal is anything but.

It’s been almost two years and I am still getting past the trauma. I am still trying to rediscover life.

God have mercy.

The Dismality of February, and This Will All Thaw Someday

20171228_062201.jpg

Oh, the dismality of February yet again.  There is a reason why February only has 28 days (at least for three out of four years,) and that’s to put a lid on the number of people who die in February.  If February were 30 or 31 days, half the damn population would die in February, and that would just be weird.  We have to spread the death throughout the year better.  Not that everyone should die from heat stroke in July, but jeez.  I can understand losing the will to live when it is 90° and 100% humidity if there’s no air conditioning, perhaps a bit more than most, because I am not at all equipped for high temperatures.  I can abide cold a far sight better than extreme heat.

8ffcc130bbf4a7df492ccfca81e64942cda3d1d06e30172018cb7450c6878c93_1.jpg

But at least in July there is sunlight, and Ohio winters are notoriously dark and sunless. I can go all week without seeing sunlight save for maybe a ray or two on the weekend-  unless there is a damned blizzard going on.  And even if the damned blizzard is going on and it’s 4° below, Target still has nothing but bathing suits, tank tops, sandals and sleeveless dresses on display.  If I need a parka, I will have to wait until July when they put them back out.

Here in central Ohio we have been enduring a rather harsher than normal winter.  Oh, yippee skippy, because I just adore driving in ice and snow.  I’m all about those below zero temperatures too.  There is simply nothing like one’s ass freezing to the toilet seat unless I break down and turn on the space heater in the bathroom.

“Spring” will arrive someday. Probably sometime in May there will come a day when my back yard will transform from frozen tundra into Dog Shit Lake overnight.  Oh, the smell of Spring in the air.  Temperatures will go from -4° to 90° and 100% humidity within the span of about 12 hours.  There is really no Spring in Ohio. There is just arctic cold and wind, followed by stygian heat, usually accompanied by torrential rain.

20180206_213431.jpg

This is Brutus, the Catahoula^ (Catahoula Bed Hog Dog)

clara520

This was Clara^ (God rest her sweet soul) the Malinois

Note to self: the 80# Catahoula shits according to his size.  For those unaccustomed to dogs, for an example, a 65# Malinois has the strength to overpower a 300# man.  The 65# Malinois consumes, and disposes of about the same number of calories as a 300# man every day. Imagine that kind of waste load deposited in your back yard every day for six months from October until the May Thaw arrives.

In all fairness, since a Malinois is an ultra high energy, high metabolism dog, a 65# Malinois and an 80# Catahoula are pretty much identical in strength, energy consumed, and waste put down.  My paradigms have been pretty much the same for awhile.

There’s going to be a lot of dog shit to deal with.