Howling into the ocean gales
Arms flung outwards
The winds affirm my pain
Howling into the ocean gales
Arms flung outwards
The winds affirm my pain
My life is so limited lately that to continue to only blog as a way to howl into the universe that I am still alive despite all failures of things meant to make that more certain, despite the total complacency of people who accept money to ensure I am not at all sorts of risk I that I am in fact at risk of. Well, I knew this planet was not for me from my earliest days so moving on.
One of the ways I pass my life where I feel like I exist outside of time is to watch too much Netflix. It actually does the least harm if I get stuck in it as I am not typing or attempting something dangerous or which will result in days without sleep and sore joints.
Their offering “Atypical” was one I watched when it came out. Wondering how another teen with autism would be portrayed.
I am mostly reserving judgement in how the show does use functioning categories because there is some challenge too them as well.
I found the show to go heavily on the everything is somehow okay side though. The protagonist is 18. Has a part time-job which he apparently holds without much issue although he has a side kick and an understanding boss. It is in an electronics store so having sometimes contemplated that as bliss if I could stand better it’s a maybe. I would have liked if employment as an issue came up somewhere though.
On concluding he would like a girlfriend, Sam proceeds in a methodical manner. I have no issue with that as I found that very me. I kind of did have one about the outcome. Realistically while his younger sister gives some sense of needing to be there for him, having needed to be there for him he is not seen being bullied ever.
He concludes he wants a girlfriend and gets one. He makes some understandable missteps along the way but this is high school.. He not only gets a girlfriend but he allows her to train him to talk about penguins less. This was perhaps one of the most clearly problematic bits about the show.
The other big issues in autism get skirted because the father says of functioning labels they don’t really use them. When Sam has a bad melt-down on a bus there is the well that’s life with a “high-functioning” kiddo”. No clear shots across the bow at them get made but the promise of some one hopes.
Although Sam’s therapist has gone into it motivated by a sibling who remained non-verbal and his mother is very into all of everything that one might consider the negative kind of “autism mommy”. Again it is the father who suggests towards the end of the season one that an identity beyond that would be a good thing.
The show is a comedy so the kind of heavy-duty why it is not just a good thing but a necessary thing is not going to happen. You have the one character occasionally challenging the whole way autism is framed by those who are not autistic.
The actor portraying Sam is not autistic. A sore spot of late within the autistic community and a familiar one for the disability community overall. It’s not that he didn’t do a good job. It was a role he wanted and one he feels is his favourite thus far but this does suggest that they were not looking to cast an autistic actor. Is this ever going to change?
So it is high-school with all the potential horrors and yet in ten episodes Sam has one day where he winds up under a lab station for part of it. For those of you who know me I do keep saying under is the superior place to be for all forms of distress.
His girlfriend who perhaps could have been used to explore some of the things Sam has done that upset her like his pro and con list. Lists are lovely for the kinds of things that seem big. Neurotypicals likely proceed through all sorts of things without them but I have made lists and plans for getting just a regular friend. I used the best that science had to offer the second time I did it as I knew more about what science had to say on the matter.
That a list is a way to make the impossible seeming slightly more probable. It also takes something which at 18 is harder most of the time than at 49 – the whole social arena and contains it. You have a plan. You can proceed with your plan. I used to have plans for every area of my life that I evaluated at least annually — some quarterly. This was especially true for the difficult parts of life. A plan. A list. These are real tools and they are mostly things which are fodder for comedy when someone Sam’s age who is also on the spectrum is enthusiastic. Perhaps the comedy wouldn’t be diminished if a sentence or two of why they are so wonderful happened. Maybe none of the experts the show consulted knew why.
So having gotten a girl who openly behaviourly conditions him to speak about his passion less which sure you could say this is a lesson in compromise but what it says to the autistic viewer is that life is always a trade-off where less of what makes you who you are is what the world wants. If you become less you then you may be rewarded with acceptance. It is a long shot. That too is not portrayed in the show.
Another long shot is when said, girlfriend wants to go to the winter formal and this would be too overwhelming for Sam. She goes up against the PTA and when all sorts of incentives rain down on those who want a dance of the kind where you can hear the music booming versus one where the music could be delivered through headphones. See aforementioned job of Sam’s. Still who thinks this would happen. That the mother’s on the PTA who oppose it strongly didn’t peak in high school and were the mean girls then and have not changed much. Maybe age wears down their talons but they have fixed notions of what a dance should be. I am guessing these formal this and that being much bigger deals in the US and I never attended a single dance in high school. We didn’t live in town and gas by then was tight and well the 5 minutes I spent at a Junior High one so my computer matched “date” could get in for free ( who knew they weren’t all free) was about enough. Much like my 10 minutes at a toga party my second day in residence before most had arrived filled my toga party requirement of university.
Then there is Sam’s other desire. To have sex. Again approached methodically he improbably pulls this off at the winter formal. I mean it would have been probable if there had not been some drama ahead of time. He handles the loss if his girlfriend, however temporarily by being convinced a quest is needed and the logical one leaves him soaking wet but having won fair maiden. No one mocks him for being soaking wet in formal clothes. Right. Was the author home-schooled?
It works and he and his beloved do the deed right there in an igloo his father made for him (not out of snow so surprisingly Sam does not deduct marks for this). I was disappointed by this bit. It acts as many books and oh so many expert writings on the topic as if in 18 years nothing has been picked up about what would be appropriate or not. Having sex for the first time in a display in a public place would seem like it would not only be something Sam would know is not appropriate but given it isn’t a real igloo and much of the other comforting things from his Antarctica themed room are not there. Just the fakee igloo which while Roald Amundsen, fresh from his North West Passage exploration did indeed use. This, skiing, sled dogs, and being willing to eat those dogs (this comes up if you ever seriously consider applying for a job in the North in the why dog sleds are still better than snowmobiles section of things to consider) no penguin ever set foot in them.
Consider too if you remove the sound of music blaring, and everyone has their own headsets, hopefully set at hearing friendly volume this might be rather hard to do at a silent dance. If it is something that either teen would consider appropriate. I would think it would present larger challenges for Sam but given his girlfriend’s previous efforts on shaping him in the way things are done also a huge let down for the whole love those you can change model citizen.
Snow may have silencing properties which I appreciate when it actually snows here but this just looked that way. It also looked like something I couldn’t touch but they leave Sam with just the standard set of sensory issues so things he can’t touch don’t complicate his tryst.
Overall ten episodes isn’t enough to judge if it will get better or not. The issues the show skirts around would really have to be tackled in some substantive way for it to be a semi-win. It isn’t horrible and it did leave me wanting Sam’s room very badly but it isn’t a realistic portrayal of high school period let alone autism and high school.
It leaves too many key things as just side bits the Dad hints at and given he is alone there people may think he has the issue for not “doing” functioning levels. Or thinking of autism that way. Then again so would the DSM V which pretty well point-blank states the numbers for each category in terms of functioning can fluctuate and they are defined with the premise that support is provided. It could take 20 years for that filter into the minds of even the “experts” let alone the general public so we can only hope that either this show or some other handles things a bit more head on that are issues largely because an inaccurate way of looking at autism hard set and is tricky to shift.
While never a diagnosis I have a report that say my previous diagnosis was “High Functioning Autism”. I did like the report though as the next paragraph my “Very low functioning” on those lovely scales of adaptive living is noted.
So here’s hoping if Netflix wants to tackle autism they do it both head on and with some insight from those who are actually autistic.
I used to take my pain and fear and feelings too primal to name lest they grow down to a wind whipped ocean and howl into it. You get an answer of sorts if you stand just right. You felt alive and this brought relief once.
I cannot get to the ocean now and the tears I wind up crying when I think of how many people have had to decide to do basically nothing to ensure I survive are not do to the familiar contempt for my autistic life. Or my poor life, my odd life, my seemingly useless life to those who judge but because it is such invisible pain and invisible fear.
I don’t want to die of an intensive neglect that should be impossible but I suspect it happens a lot.
I don’t want to die because I am seen as someone it is safe to ignore. I have no parents. I have no children. I do not have a primary claim on the heart of anyone. I know how when I have gone to appointments with a friend that alters how you are treated. You are seen as someone who people care about.
To have zero services and have the person who was supposed to fix one of them be the log jam in ever having help again should not be possible.
I know they cannot be aware of how horrible life lived so utterly alone becomes. The 6 days of trying without success to get fully into bed. My dog is a genius at ensuring he gets his needs met and then I return to the same level of stuck.
My good computer was a casualty of my over the bed table breaking and thus some avenues of escape are less possible. The big issue though is that it had three non-working keys so I could not get stuck in non-productive typing on it. The 6000 word emails I never send or the blog posts of pure nonsense. I typed for a week straight and my hands were discoloured and swollen but with nothing or more specifically no one to break the pattern on I go.
I used to be good at what they call “switching attention” and I hope when or if things ever stabilize I will regain some of that ability. I know the role having seen a person plays as for just awhile I can focus long enough to do something needed.
I miss a mythical pair of parents I guess. While in the last years of her life my mother was more understanding and accepting my father was not. That is when it was just him and I phoned because it was one of the days he would shower and he called back to say he was out of the shower – a system necessary because in some decision makers mind the elderly need just two a week. If he thought to comment on my life it was with impatience given I was not senile it was my not remembering to eat he took issue with when he did . Most of the time it was short this seconnd call that signalled he was alive. A system to ensure he had the dignity of being as clean as he had been when my mother lived.
A system he was fairly compliant with for reasons I understand as it is a life-ending fall I fear most of the times . Sometimes lately I wonder if it would not be a mercy for me to die in the exact way you do learn to fear if you are alone and fall a lot.
I had a bath last week. It was momentous and dangerous but when your feet and lower legs have been colonized by a bacteria despite your supposed eligibility for home-support that never re-materialized and you reek of things you should not well eventually you have had enough.
In the process I did fall three times. The stepping motion is on where my legs sometimes give out. One was just into the tub itself. The kind of fall I regard as a good fall. It is a sad system where one grades them but the other two were the bad kinds. Or the semi-bad kinds as it is the counter-top that is right beside the tub that could end me and twice I had a near brush with not keeping my head from hitting it.
After though, I could not help but wish it had been that easy. My head smashed in. Dead because I wanted the dignity of not smelling of urine and worse. Of not having feet that were in worse condition than a street person’s as they have foot clinics for street people. Just finally free of this invisible, tortured life.
Although the difficulties exist because of autism plus physical issues it is not autism that makes me wish I had died from trying to have a bath. I want to be clear on that. It is the many members of the “system” who have jobs which are meant to prevent the many worst case scenarios I represent.
My housing. Not just an issue due to accessibility features which are not here but because my landlord scoffs at notions of building codes so rats can fall from the upstairs, through yellow resin insulation coated in dust, through electric wires and down here. The drywall to cover it is in the closet with the water heater but the make shift wiring and plumbing make that impossible.
I do try to not think of the substantial increase to lung cancer risk from this exposure but my asthma and my dust allergies make the bathroom a hard place to use.
Almost 6 years ago appropriate housing was the “powers that be” number one priority with adequate pain control a close second. One wonders if life would have improved had they been lower on the priority list.
I have joke I am a hermit but mostly all of this just makes me feel more alone than I thought possible. Each passing day that intensifies. The fear does too but mostly it is a sad, sad way to live.
In the past months human issues seemed the main concern. The ability for an employee of the government to ignore me so entirely and when that had the logical consequence of poor care it was not the service provider she did anything too. That I guess would be work.
In order to be one of the perhaps not so lucky few to even have services through CLBC despite an IQ over 80 you adaptive functioning scores need to be pretty awful. Mine were more awful than they needed to be and it does kind of suck to have the education to know what that means. To wonder if anyone at CLBC does when the laughable task of replacing your service provider is yours.
While it’s true this would involve slightly higher skills like this in activities of daily living if your adaptive functioning scores suck your very ability to stay alive without help is doubtful. When I got the test results I worried they would be used to push for a group home placement.
You never think that finally getting services for your autism will have so little to do with autism or you.
In a program where way more people with Fetal Alcohol Effects qualified than autism I cannot compete on subjective measurements of disability. I mean I had been a CLBC contractor and knew my facilitator was voicing disability discrimination that of course they screen individual service providers for but apparently not the high level “help”.
I am a more hopeful person than I get credit for but we still have issues from that fall in July that the only thing my facilitator did was stall my doctor and then claim my hours determination came from that assessment.
I had several things tested and sure now ensuring they only got the adaptive living scales would make sense but I am accused of a life long history of cheating downwards on IQ tests.
I had taken the WAIS twice ever. At 18 the excitement of the tester on day one made me throttle things a bit on day 2 as I did not know how they scales work and that this would not alter things much. I do really suck worse at performance but I was 18 and my usual self and trapped in a psych hospital and the last thing I wanted was to get anyone excited.
I had never taken it again. What’s more I told people about my interest in 120. Optimal for success as smarter is too different from others but to have an edge and still be in the range of others is it. The testing environment was noisy and I did not want to do it. If you grow up with a disability the ways you get tested and observed vary but you loathing of it all which just seems to prove this is not in fact your planet is real.
Magnified in the years between 18 and that fateful day by being in classes which used in class experiments to show the limits of the human brain. Again my brain was not human although the prof. had anecdotes for each odd result.
A savant skill so extreme the years of avoiding anything that could show you had one, well it was a work study in the worst department of all to be an outlier in the area of savant skills. The fuss and attention were something I had to repeat the lyrics to “I am a Rock” to be distant enough and then the expectation that I would want to use something which came with no guarantees for those desperate grad students which I did not built..
For the purposes of the program my IQ is irrelevant but if that phrase has an effect on someone who , well I am amazed she can hold a professional job so of course I seem less disabled than others but I wonder if she is confused about my motivation as there was none. When I couldn’t hear the first question of a test I didn’t want to take I just went slower.
I didn’t attempt to hide that there were some scales that interested me as that is noted. I wanted to see if years of computer gaming had improved my spatial skills and while not helped by poor visual ones they had improved and one other.
If my doctor or the psychologist had asked other staff which I needed them to do as aiming for a number I wound up getting exactly only prevents the impulse if it is clear the test is useless for you.
IQ doesn’t alter how disabled I am. It often makes me get stuck in fights of thought that perhaps if I were less intellectually able wouldn’t happen. It is lonely too. It threatens the insecure who viewed me all wrong. Not as a person with multiple disabilities who can’t call strangers , whose ability to speak flees or does other things under stress and on and on the list goes.
Still I am me. Which means I protested something that I should not have but then I would not be me. I was very much on top of her apology for the visually “developmentally delayed” being in the literature. If you question why she is apologizing and know the ideology that she is not matching well subjectively I am scary.
It’s not the first time someone with power of life or death – lets not be confused that hours are very much a matter of live or die – has said something so awful early on that my protest of it has played out badly. I defended addicts as real people to the clinician of another program. The decision to combine all intensive support likely broke a program that was effective but of the four teams this one had room because she signed off on all 40 people potentially living in a squat. Then there was a fire and as legal competence is rare in their clients none of those people were able to choose on their own. Real people were the good people who got the place and despite 40 times 375 (housing allowance still at 1970 rates but hey ! ) which would have got perhaps an overnight person to patrol without denting the money much it was exactly this that real people like the owners or well if it was your decision they had their fall person. Expected to make a sound decision for people deemed unable to she didn’t and people died or were hurt. Not many but 1 is too many and the whole way of lowering their main client group to less than even real upset me.
It isn’t my issue but all people are real and it’s hard to know how many people work in human services who see the populations they serve not as people who need some help to get by whether that is legal and addiction related or autism and well the many things that don’t happen without help.
Eventually you lose hope. I was there as it had become a hard commute all the way to the bathroom or to get the dog out. One I had to rest fast or fall over from. The effect of living off oatmeal and granola and trying to make it last as if you can’t make it 10 m without resting making it further where you have to cope with noise and sound and light…
It is not like science ever said if you ignore someone with autism their problems go away other than in the worst case scenario where they do indeed go away.
I don’t know for sure it was subjective versus objective disability that is a reason why I am stuck with 11 hours less than it took to serve me before. I’ve never officially had more than 5 and I was getting 16 hours because someone thought that was a work around for my facilitator.
The hitch of course is if you need that many no one will take you on with 5 hours. If you could harness the abilities you don’t have on those same objective skills and somehow got someone to interview the list of things you need support with is impossible and they do not have to take you.
I am a fan of paradox most of the time but this kind of one where something is expected that is by definition not possible and it is government … hmm lack of oversight? Attracting people who want pay and benefits more than to help people I do not know but finding anyone at CLBC that knows they ask the impossible and who are willing to view the whole she has ignored me for over two years now as an actual problem hasn’t been possible.
My landlord is raising the rent and my place was deemed an occupational health and safety hazard but despite the nightmare of dust filled insulation through which rats rained and electric boxes partially open to the rain the truth is no one really cares.
Home nursing could think to forbid people from coming. I think that was more from outdoors as there was smoke in the air again but the next step where a vulnerable human lives here is not thought. I am simply left.
I had mentally begun to prepare to die as any way I wouldn’t seemed impossible. It is the season where being in between the birthday of my dog and his dogaversary I normally talk to him about this oddness of leaving his home and litter to form a pack because he is a dog. I point out stars names for dogs and constellations and other silly thing people who have a smart dog and rarely see anyone will do.
This year I cry a lot. Less now . I apologized that if I died he died seemed a hard thing to work around and as it got harder to breath and to move far without resting it was not that I am so disposable in a society that believes it has a social safety net it was that he should suffer too.
This entire time he was the only one anyone from CLBC was interested in with the whole he had to be abused nonsense. Still the day would come where I would sob to my dog my sorrow not that he was abused but that grounds to take him existed.
Yesterday I saw the first human I knew since the Yom Kippur evening service. She brought some groceries which she has done at times before but it had been a long time to see no one and that was good.
Of course there was the advantage of a better diet than what we were living on. That helped my stamina a bit when I ate it. The dog spent a lot of time dreaming of chicken.
Still the thing that hasn’t made me hope as no one has been able to make a dent in CLBC so far but which at least made me feel I wasn’t utterly alone some hard to name feeling from that lingers.
There’s a market across the street. Much of what it sells is beyond my price range but I do buy milk there as the price for a brand that does not use “Big Dairy” is comparable to regular stores. There was an incident in July where 3 brands came under recall due to milk from the same source and while I never lived on a farm for longer than 2 months my teen years were spent in an area with little industry outside of tourist season and people clinging to farms. Some will always exist as people will lose money to put towards the farm that great-great- grandfather founded but dairy had made a temporary lifesaving measure then of becoming one coop. It was temporary but the image of all the things that go wrong with agriculture or other things like forestry that I care so much about have their routes in what I passed on the way to school.
Principles cost more per litre and I have heard the argument that being poor is a reason to not have them but it is the poor who are harmed when principles stop mattering to too many or the once not poor are made poor.
Principles are why I speak up when someone says something horrible and don’t pause to go “Hey your entire life is very much up to them so pretend you are oblivious’. I mean I never hear my brain saying time out before I dive in in a way that will alienate and my words never get stuck when I am about to say something moral but of low utility to myself.
The days I lay with the dog far better at meeting his needs than my own I stopped feeling real. It’s dangerous when all things social and in the community are hard to just not see anyone and not have any support to go do things.
For weeks I have wanted to go deal with something I once would have found intolerable. My tablet has issues. Look for my rant about that one day or not. My tablet is in the things I typically have with my whether I use it or not. It’s kind of a weird thing to take shopping as I don’t expect they can fix it where I am going and I got a good model last time which is too much now.
In my head I thought I would be able to go to where you can get some and well I do like that store. When the salesperson is busy I help people make better decisions about technology and I am always careful when the inevitable whisper comes about to get it there or a bigger retailer to point out the price matching rules. It is always a long wait as it feels like someone is forever testing a 9 dollar stylus over a 14 dollar one. Still it’s a wait among electronics. More comprehensible than people by far.
It’s close to a grocery store which I thought okay you get that far and buy that you might carry on although they do sell some forms of food where I planned to go. In my mind I think I had realized official support was fading and I was and doing something like this would help.
Only not managing to break me in the gets stuck kind of way but trying to get into bed for 6 days is a record and well medication and food for me just won’t happen. The weird bit looking back is the dog was taken out and then I somehow returned to some useless position. I thought I need to stop but I can’t sit for long without pain and there is no where else . Day after day. That my left leg was often hanging down made for pain when I tried to get it back in.
The fundamental problem with people actually understanding how additionally disabling this kind of long-term stress is for me is that if anyone was here to see I would do better. It’s the many hours I hate to admit that went to something like that . Better for others than the 3 day email but for my body it just stressed the broken bits.
There is little point in writing about the risks and happenings of this fairly invisible person if people only take away they are glad not to be me.
The person who came with a variety of food was a person who remembered I have needs and I exist and well her choice to show up with food was tangible proof that I am not entirely alone.
I managed to get milk today as that is how support works. You tell the dog you think you might be able to make it across the street for milk while chicken and cucumbers and humus lines your surprised stomach. That this was your best window in months. This remembering that however disconnected the govt. employee is from my disabled reality someone cares.
I know there are people who care further away but they are inevitably so distressed by my reality that while it is one worthy of distress if they are someone who you see as in need of protection from some elements of it. Like those who believe it’s easy to right a wrong that you know no one wants to fix, or family with health issues and those closest to those with the other health issues and that doesn’t leave anyone.
Love is sometimes having to say you prefer someone stay close to familiar specialists. My non-facilitator shouldn’t get a two for one bonus on killing with neglect which given how nothing she has done or not done is an issue for anyone if someone shouldn’t be stressed the rock like person she is as far as her not really having a clue who I am and never having tried to find out is the kind of stress middle-aged relatives need to do with out.
The price is then being reliant on not strangers but the community here which the whole not being able to sit has made a dent in our being an active member so the number of people who routinely think of me is way down.
I drift in time without any thing to properly anchor it and can’t get used to the new schedules for services. I miss the simplicity of being sure there was one as Shabbat was a consistent deliverer of a window of relief from being me. It still happens but a person who spent 6 days failing to get into bed might not be up to much for it.
I had trouble keeping Rosh Ha’shanah in my brain for long enough to act on it. A friend just thought I was skipping again. That I take some days as not optional short of something dire has come up before. I am more traditional than most of my congregation but that right is part of the ideology of Reform . I can be.
It is hard when you feel a govt. employee is killing you without even thinking of you much to not wonder how it comes to this. To exist at all seems too miraculous and well death by govt. employee under achievement something one would work into a British Columbia themed Dungeons and Dragons. Roll 6. Luck. Your confused govt. worker thinks he works for the Queens Printer and based on the stack of manuscripts he was napping on his underachieving won’t hurt you. Roll 11…. Oh no. By qualifying for support you always needed your life may be forfeit. Roll 18 Someone comes by with food that remind you will your life may still be in the hands of someone disinterested in helping you are not alone. (Sure in the game it would be a rope or something but the one game I played to the end of DND was mostly about my bosom. A female showing up for the games club did the Dungeon Master in…. )
If this is just a break from apologizing to the dog then it is still a break. One does have to choose to be grateful even if thus far the immovable nature of my facilitator has been a constant. It’s easier for the dog. Foods that have a smell thrilled him and while he licks the tears from my face he registers my distress but not that he is part of the worry.
I used to just worry that his life was blighted by my stress and sadness when the first 3 years of his life were so good. I kind of miss that being the pressing reason I wished for something else for him..
Right now we have rallied a bit from all 4 food groups ( I don’t typically pull that off but we do usually manage okay on a diet where peanut butter is a staple ) My sister-in-law is a vegetableaholic so with my luck the cucumber will be contested but houmous is mostly made from one.
I could have gone to dinner and I spent 49 hours trying to reply so 2 people remembered me I just am that hopeless and I feel like people would doubt that kind of thing even though I am honest as even to me it seems a weird torture when one task you can’t get out of bleeds into a new one.
That some protein and other foods and more importantly a person remembered I am out here and came, well for a few days things will not run smoothly. Still today we did get milk bought and as across the street seems like a distance nebula many days we will take the miracles we do get. I had begun to fear I was over my limit for a life.
The monster I enjoy being versus the randomly less than human by so many people I officially deal with.
My wonderful dog who on this day had as a pressing matter how too get the tv on. He snores and hogs the remote (well the tv doesn’t work in my room now so there dog… he has to hog Netflix instead) qualities I thought I stayed single to avoid. In any case that was a better day when he did not have happy chicken dreams because life had been derailed for some time.
Pardon the poetry but some months are so awful nothing else will work. It has been decades since one would mistake me for a poet but the most raw subjects will not be formed into sentences with ease.
Invisible people leading terrified lives
Unheard as well as the words we summon are taken as other
When words will not come dismissed as having issues
When they come slowly they are again issues.
It is a terrifying thing to walk among those judged as people
To depend upon them and know that you are in fact a hostage
They can and have hurt you.
They will again
A word sends you flying blinded by all but the desire to get away
Words you were taught do not hurt. They do.
You do not have to fall down a case of stairs because of this blind panic
The panic that comes from being seen as less worthy of anything useful
The fleeing to most confirms that.
If you could speak easily you would spit out the relevant research
No one actually cares that if a word you have heard often sends you so fast
You are in fact already hurting more of the time than not
Dismissed again with less than a proper exam as you are not worthy
Not of the care those unlike you get
Not of concern that your constantly over—aroused state needs looking into it
It is, after all for those who understand brains a sign that calm has too long eluded you
Brains are your area but they who can sneer the words of dehumanizing would not think this
You will be dropped off
Without proper care, lie in pain and terrified
Wonder what it would be to be an actual person
Perhaps just as bad you think as that seems a process of trading truth for something else
Those that do it control your care though
You want someone to know but have never been able to call strangers
Your request is refused, you point out the dubious legality of this
They decamp to the truck to follow the edict that nothing you want done will be.
A hostage of disability or the smug feeling that you are others too control and spin.
Wrong has been done but if they can get the their version out first …
No one comes of course.
This feels like re-run
To make it worse levels of how little you count have kicked in
Fired by your pharmacy you try to create enough of a balance of things so that this is not fatal
Invisible lives so unworthy that the potential for death a fairly clear ethical line
Need not apply to you
Devalued lives, unvoiced fears, where is my voice?
Tears are shed into the dog.
Accustomed to licking them from the face he performs the service again.
Choke out a few words for him on how sorry I am that he is stuck with me
He could have a happy human.
One viewed as a full person with the rights of others
Then again they might consider him their owner and likely have others to help when tears flow
The sensation of panic will not go away on its own and looking at the medication left
The worried math of evoked potentials
The work that should have been done by he who felt he could indeed deny something vital over profits.
I have for years sent back the form he demands I fill out.
So sudden action seems cruel as I am used to kindness in a pharmacist
In the former owner as well
Red faces and stabbing the air he has spit out he is both
The new owner and a pharmacist this enraged bully confronting me at the door
Of what passes for my home.
The stress and fear apparently not his concern other than in theory they are
That I may not be able to cope with any of the ways too work around this firing
should probably concern him but why would they?
Many professionals have ethics but they apply not to the likes of one such as me
The death sentences fly in
Society trends in a direction so horrific that this is one of many similar incidents
The worried math of how to prevent death is my concern
Another gash in any facade that I am a person
The progress through which you become a non-person is ongoing
You sometimes forget.
Sometimes in the brief joy of being among people who see you as you
You are lulled into thinking this is a view that might catch on
In the days that follow you will reflect on how often you have made this mistake
Chiding yourself for blaming yourself for the natural desire to lean into a better identity
To believe others may not be blind whatever caused the quick dismissal
You are wrong though.
Asking for a phone call to be made you are refused
Autism is something you feel like blaming for this form of hostage keeping
That would hardly be fair though
As society has in theory provided support based on what you cannot do
Then never really monitored if they comply
So now they too are terrifying as one cannot be supported by those who will cage you
Who are alarmed that the agency who has every right to know and thus they will not.
Invisible, unheard, damaged and scared
Not by the neurology that allows so many to discard you
By the many who have to view you as less than to get on with …
I have no real clue what drives this desire that some must be so much less than
It is common but it’s utility is lost on me
Invisible, unheard, hurt and terrified.
Sobs hit keening levels but no one will ever hear or come
This is not a reality with a place for the likes of you
You are paying the full cost of having forgotten ever that this was the case
Rocking as the dog likes the salt from your face you croak out Bill-C-24
The dog no more like other dogs than you like people wages his tail
If you had croaked out good-boy he would have barely noticed
Days go on
The dog not afraid of course as you are a reality he is used to
The fear escalates and escalates
The math of thresholds and evoked potentials has you hoping most of the risk has passed
So too has anything that might help with the terror
On the day I was born a party was held
I wonder why as the 49 years that followed do not support it as joyous event.
My father passed away almost three years ago. Unlike my mother what to say was difficult. What to meditate on in advance.
As I sat contemplating this as I felt I had failed him somehow as throwing him in as part of an other issue would not do it. I thought as I ate near where I would go to observe his second yartzeit ( the anniversary of his death ) a lot about the contradictions in him.. He never said he loved me. Not once. He in theory did not believe in love and I had thought for a long time that to respect his belief system I should not love him but he was my father. Love was inevitable when I set that aside.
I wrote this before that service as my status on Facebook:
Two years and I miss you still. You were not an easy father but it was you who told me the most about what it was to be me. You taught me things when some might have wondered why. Those dark starlit nights when for a man who said there was no such thing as beauty you sat transfixed by the night sky.
You said love, beauty and G-d were for others. Those not intelligent enough to endure this world without them. I tried to respect your belief system although I was your genetic challenge who in my teens you threw a book across the room and asked if I could not see I had surpassed you.
You never seemed to realize the grim realities which could have come to pass if you were not stubborn on my behalf early on. Or maybe you did and that was part of your anger. I will never know.
In the end you were proud I had reclaimed a heritage I always suspected scared you. Your drive to convince me on all three points seems now an extreme version of protecting me. Beauty can be transient, love may fade or fail to take root, and well G-d, the hardest one to convince me was for others, can seem absent when it is hard to understand why. Free will as a gift given the nature of humans can seem small comfort.
You joked a lot when we visited the last winter of Mom’s life. Calling me rabbi so often I said keep it up and I would become one before I had a doctorate. Your confidence unshaken by my small life you asked,”Why not both? ”
You held me briefly as I came in from my nightly visit with James and said “Out of everyone only you had the courage to be a Jew.” You said it fiercely but Far you never managed to convince me for long on any part of your beliefs. So I knew this was pride and love however hard you made your voice.
So I do love you. I look at pictures and wonder how you convinced yourself it was not real. Broken so completely when Mom died that to live without having loved may be easier. I don’t know.
One of the last conversations we had you seemed about to cry over religions so beautiful you had seen in Malaysia that may have died. I said it could be they were worshiping outdoors and belong to one of the many religions going strong. Again with confidence I do not have you said you had books from then not all of which you were sure of the language of but I could work it out.
Being your daughter was often hard in ways it did not need to be. All the same you were the best father for me. I love you and tonight I will praise the G-d you could not bring yourself to believe in , in your memory. For two years that you fit no meditation I could find drove me to epic levels of writer’s block.
I suppose this is it then. I love you and I will miss you always because this planet is indeed a lonely place without you.
Why now and not when it has been three years?
I was at the beach yesterday and I thought of my father. Not that he was a beach goer but the year he got a metal detector for his birthday my mother needed to stay out of the sun for another week. She gave him instructions on how much I needed to swim but she thought I would be fine with going to the other lake nearby for the sake of our joint treasure hunting.
We found very little but we faithfully recorded those finds. ( See photo of a huge treasure day above)
It had been a long time since I had done an activity with my father. As a young child we used to go to a river to picnic and fish. The whole I never caught one makes me wonder if they even had fish .
My father would die without ever saying he loved me. I do know he did even if the words never hit his lips.
However hard he made some part of life there is so little point to hanging onto that part of things. Those hardships we did not have too have and well a long list of other things.
Those distant treasure hunts now seem a treasure in themselves. As one who struggled with the concept of love but did work it out the many reasons why my father may have never gotten fully there are clear enough.
Yet in so many pictures he seems happy with me. The years that would follow that summer were more sickness focused although my mother and I would swim her final summer as always I felt sure it was indeed the final time.
I face several medical challenges and despite my parents not usually having much to do with those they come to mind.
I do not grieve some idealized version of the parents I never had. It is the flawed but sometimes surprising parents of my reality I miss. There was a time I thought that would never be the case but even if it took two years to know what to say in lieu of a mediation before prayer and longer still to complete the task as far as it really did seem wrong to just carry on blogging without at least trying to be fair. It is not the intense writing of a fresh loss but my father is a hard man to nail down with words.
When I was young enough others might have doubts he said one starlit night that I would be lonely due to being so smart. He died believing I had the capability to do more. Maybe and maybe not. But this unshaken faith that the finish line to some lofty goal could be reached is a gift I think . I have heard parents say much the opposite. Parents who perhaps seem more typical in so many ways so I know this acknowledgement of a pride in doing what he could not as far as live as a Jew, was real as was his belief I could still get a doctorate and become a rabbi.
When I was in cadets for some reason the thought that he was one became stuck in the Regimental Chaplain’s brain and several others would also call him that.
My father had had to leave school very early on due to the Second World War and he always wanted more learning. This part of a heritage that he had feared was one he did stress as he saw that as a positive part of it. The rest of course given the course of his childhood were difficult for him. Then thinking it safe here, the year I was 12, he had a horrible incident on the US border at a remote crossing.
Paged after a parade I was in with cadets to see the parade marshal . I did and it said to go to my aunt and uncle’s house. It was close and I went there. My father was shaking. My aunt suggested I go and find my cousin but he wanted me there to see and to hear what had happened.
Many years later when I would be a victim of a hate crime which initially seemed random but I was the only one to think that in a country which for no logical reason seems like the scariest place for it to happen he would apologize for the facial features that were his.
He had said as one can add to the rules of survival when he was traumatized that I should only cross the border with very Canadian people. Thus I have crossed all of once by land. That is how such rules work. There were a lot of them he had taught me before but ultimately the inherent logic is you are alive due to them .
People are products of not just genes but experience and there were experiences if I could I would have wished changed for my father but they may have been what made him such a staunch advocate and ultimately a proud father that I had finally gotten the task done.
I will never know what I love you would have sounded like from his mouth but I do know what pride, confidence , worry , and so on sounded like. As I said it is a topic I struggled with and perhaps lacking a reason to work out if what he was feeling might bee love he never did quite get there in words. In deeds though and in other words he did indeed.