Tag Archives: mental-health

Seclusion and Restraint

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I went through something so horrible last Monday I cannot write about it in any comprehensible manner without winding up in tears and shaking.

I cannot not write about it either because it is a common issue for the community. One which I somehow thought would never again be even on the table for me. I was wrong.

After having a number of weeks which were even more difficult than before I went for help. Getting help at all has been a difficult chore as my status as too atypical for most approaches has meant more time has likely been spent with people writing reasons why I am failed over and over by systems meant to support.

I had been hanging on my a thread so slim, I will not sugar coat it. I feared I would kill myself and with no way of getting help had to take measures to prevent that. As I did at the start of all of this I had to make swimming out to sea impossible and I did.

I do not believe it should ever be so hard for anyone, of any kind to find themselves in that position. To find myself there again having tried so hard to get well was beyond upsetting.

I had been in contact off and on with the crisis team here. I had left countless messages at the clinic I am seen by to update them on how I am doing since not being able to phone during hours where someone might answer the phone is a problem.

I had my friend phone, when she came by the house last Monday. It had been my experience that messages tend to get passed on to my doctor, pretty well, only if people phone about me which makes it even worse.

Still I so badly wanted to survive that I suggested that.

I have to use the past tense there because what followed destroyed that tenacious part of me that has fought and fought through service inadequacies and outright abuse by service providers.

I had no real faith in the system left but I had retained a notion that my life is sacred. I had seen  that rebutted my entire life. As has  my basic humanity and my sharing “fundamental” human characteristics. I wish that was not part of the autistic experience but it has been for me and we can certainly see in the news that there is not much evidence that has changed as the murders of those who are autistic mount and the spin is nearly always such that it is us who are difficult. So difficult that too many times I have wanted to throw up when murder after murder is justified.

I am technically alive but right at this moment that feels like a technicality as I was brutalized in such a manner when already barely hanging on that I feel quite done with this horrible planet and those who prey on the disabled and ill for kicks and because they can.

So I apologize for inflicting what may be horrific haiku on you but only by sticking to any sort of strict structure could the words come out at all with me semi-intact.

That complaints are being filed and words written that they claim will protect me against this ever happening again is no comfort as signs that the words that have been written in the past are read are few and far between.

I was placed in seclusion in a ward that was already locked with the reason being given that the doctor was afraid I would leave. I had a serious injury which was the reason I needed to stay but I was not given the option of having that tended to in any other manner.  My own doctor was consulted and while having sent me for treatment with the understanding I was willing to have it there is no doubt he would have insisted if I was not willing that I was willing would be something he covered. So they called someone else to get the result they wanted.  It’s actually in my chart how unnecessary involuntary treatment is for me. Placed there the last time someone opted for that and caused great stress which I can never afford.

So much has been documented about every aspect of me in the last few years as my doctor tries to prevent one horrid thing after another from happening.

This was so completely unexpected though. In my worst nightmares I feared that part of emergency because the sheer over-capacity numbers and chaos have made it hard in previous times. It was for that reason no decision had been made earlier as I froze at the thought and shook and was stuck between the horror of not being helped and that and as sudden never works for me we went home to the void of no support and mounting anxiety over our inability to eat and so many frustrations happening at every turn.

As I cannot describe the situation where I felt that tenacious little finger grip on the planet slip. The anguish of knowing I would never be human enough to be safe on this planet.  I am in tears just setting it up so I bring you the semi-untraditional haiku version which mourns not just me and my realization but those who have paid the highest price for being too different for a planet that seems to crave cookie cutter people.

Earth is a planet

Filled with people  who crush hope

Shred lives with laughter

 

There is no remorse

Reconciliation impossible

Lives deemed less worthy

 

Life as a human

Has never worked for us

Always alien

 

That we are not monsters

Children and dogs attest to

Yet our lives stomped out

 

 

That is all I can say now.  I relive the horror, the pleading that given my replaced knees and severe arthritis it was all so dangerous. I will pay the price physically for this for a very long time. Emotionally I may not be able to recover.

To those who debate the damage seclusion and restraint does more academically and justify it I would say try it. Try it in a true way. Go into a system where you seem too different to treat humanely versus just entering a room where you know you are having an experience that will end.

That is after all the real problem. While I felt that tenacious anchor I had on the planet die in quite a noticeable way the primal fear that nothing would ever be safer again is perhaps not something that can be simulated.

They had no reason to do it. They rotated someone else in there once they had me trussed up like a sheep in restraints on a stretcher for asking for toothpaste too often.  I lay there and they joked about me. A nurse asked about my hitting my head while I was in there and replied to my honest answer that I was feeding her a story. Why ask?

“You look uncomfortable” (laughter from the security clowns in the background) and so it went.

The chilling part beyond feeling they had killed me which is an ongoing issue (I know I am alive but something fundamental to wanting to be did finally permanently depart.  I have my doubts it will be back) was when deciding who to put into the room next (which is not how it is meant to function) they ruled out someone who had a long history of violence and was not settling either.  While I admit the patient they put in there next was uncooperative this is the reality of people in residential settings. Minor things have major and damaging consequences.

Nothing about me justifies it.  No one is even trying to at this point but that does not mean any major accountability for what may kill me will occur. Or the additional physical trauma.  Heels have been dragged on having that properly assessed even. Although they added more pain meds today seeing that the increased pain does remind me of the incident and thus I am re-traumatized over and over again.

The person who had come with me and knows me and is a police officer who tried to reason with them every step of the way.  He had stayed because he felt the treatment outcome a previous time where he had re-directed a doctor to the part of my chart about communication had been much better than without him.  He had to justify staying as he is much in demand for situations where people might fight help. So my being willing made it a hard case to make but he could point to a January situation where his presence and indeed going to hospital were unnecessary but without him there I would have wound up in that same ward for less reason.

His having been nice about it made it tolerable as otherwise one could seethe the whole 9 hour wait about the stress of having been dragged from your home and lied to by the person who made the decision. The kind of person who can justify lying as protocol as if all people are the same which was the attitude that pretty much doomed support by that group from the beginning.

He did his best. I do not fault him. I had joked earlier when I could hear him making his case and it was not yet clear he was not winning hearts and minds that he was my “knight in bald armor”.

He tried even as step after step of the nightmare enfolded to minimize it but I am glad he left before he could see the full brutality of it all. He is on a commission to make changes. Changes which right now seem like they will come to late for me.

I felt I should post about it though.  There is nothing pretty or useful about it other than my being able to somewhat articulate a horror that has killed and does permanent emotional damage to people too often. I wish I knew if  my being alive is a technicality or not right now but such is the harm done that finally I feel no urgency about resolving my eating issues, or my other medical ones that go untended in the community.   I finally hit the point where saying I don’t care became true. I do care that barbaric methods used in health care environments stop.

Torture is never justified. No one is pretending this was.  They will all keep their jobs though and who knows how many people have had the same happen since. What I know is several doctors will have to treat the physical consequences now and I cannot believe I will ever care if I walk the earth or not.

That may pass but it seems so unlikely as to walk this planet as autistic is to invite brutality in the extreme. From the banal comments that make  you seem less than human to the total brutal treatment by multiple people with both power and control I am not sure why anyone does.

It had become habit to fight for help and health.   I would not be killed as easily as too many people I knew and loved or simply new as people of the tribe of the atypical brain.

Being murdered is of course more permanent.  The anguish when something in you dies is a pain I hope most people are spared.

 

A Painfully Analogous Blog Description

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A few days ago on Emma’s Hope Book Ariane wrote about the realization of how frustrating it must be to communicate something clearly by behaviour and have everyone not realize what it was you wanted.

http://emmashopebook.com/2014/03/04/picture-day-moments/

I thought at the time that the grand frustration of an epic day like picture day for both Emma and her mother on realizing the people at school had not been able to work out what Emma was trying to indicate and had thought her family wouldn’t want a picture was so sadly perfect for every day life as autistic.

The last few years have been horrible on a scale so epic for me that even in a life where little goes right I have started to wonder. At multiple junctures when things could have perhaps made some progress towards decreased stress, some return to functioning levels I had once had one day catastrophically bad decisions were made by those with power over me.

In the post before what apparently was a worrisome silence to some of my followers (Sorry about that) I described the horror of having a medical issue I did know needed attending to but lacking the ability to do that myself.

People who live lives often dependent on how those who are supposed to help them won’t be surprised I don’t think that the first casualty of this was my case manager In a way that seems baffling despite in theory understanding my challenges she felt upset by the week that had proceeded her showing up to see if I was alive. That is having done all the communication I thought I needed with her and needing a period of total rest from even my digital life this combined by my, in theory, understandable inability to simply move into a mindset where she could take me immediately to a clinic when she came by made me impossible.

I understand I am difficult. That most of the things that make me so are quite well known as being part of autistic life doesn’t seem to make me easier. Why is hard for me to totally understand. I proposed immediately that instead she dispatch someone to accompany me the next day but I could almost see the stress storm rolling in.

So of course she quit. At the moment of me biggest need while she has been my case-manger it seemed like the logical thing to do. Protect herself from the horror of having to cope with me one minute longer.

Things had been going downhill for some time. Part of her panic I am sure on the issue of if I was alive or dead was that if I was in fact dead the issue of her failure to reengage with me in the community which if I had been dead would have come up as an issue for sure. I am sure that as an issue versus my actually being dead was a bigger stressor. No one seems to have much hope that I will live anyway.

However bad that was though I admit while this case manager had problems understanding me and while I stressed her out in ways that leave me feeling more guilty than betrayed by the timing of her exist because it is after all always the disabled person’s fault when people can’t understand them sigh…

It sped up my being pushed into the arms of a program that I had resisted for months. My reality is that despite having spent part of an overly long period of time in hospital qualifying for services specific to autism the people who deliver them will employ more resources showing I don’t than anyone can to say I do. If you need intensive services and have the notion they should be appropriate to your needs well that’s one you will have to give up or face the prospect of having your life stripped of all that gives it meaning because ethically a person with as horrible health and as horrible scores on measures of daily living competencies cannot live alone.

This knowledge hasn’t changed and I could apparently be ignored almost completely for months at a time but when things worsen ignore the knowledge they have that I should not be on my own becomes something they will solve either by putting me in a group home that always has vacancies as it is all females. Does it bother them at all that everyone else there is elderly and has been on such strong medication for a lifetime that their ability to do much at all is no longer there and that I have nothing but gender in common at all? I guess not.

So while agreeing with my doctor 100 percent that the only time forward progress had been made was when I had intensive daily support the people who would provide it worried me. People kept dismissing how much it worried me but it turns out I was not worried enough.

The program in question came into being to treat the intersection of mental health and criminal justice. In my area addictions are a mental health issue. One which for some people is about as untreatable as my depression. The mandate of the program had been broadened so they could become the dung heap of last resort without regard to the needs of the people places on it but the number of days you need to take up in other more expensive beds still seems to have made it hard for a law-abiding, non-addicted, autistic person with physical health in a state of collapse to ever qualify.

I am not minimizing in any way those who struggle with addictions to the point of being in a revolving door where whether it will open leaving them under a bush, or in one form of penal bed or the other is about the only random bit. None of them qualify for a shelter bed most of the time because of course if you have used substances very few will take you.

It’s a horrifying life in it’s own right and one where the system also fails. I still don’t think setting it up so they can fail me even worse from the get go with a program that all protocols come from a model of service delivery that doesn’t intersect with my reality at all is a solution.

I had been without a depression for a dozen years. I do not think of myself as depressive on the whole as when I get them they are inevitably for autistic reasons. I often think they are untreatable just because the continuous feedback loop of the stressful ways they go about it makes everything about how I function so much worse that I do indeed feel hopeless but who wouldn’t?

In the years since this started the capacities I have had have sunk and sunk which is predictable. A lifetime of viewing my speech as unreliable I could usually predict all the same when I would have issues. Enter the team I have had to dub the sucktastic support team.

The claim to make decisions in partnership with their clients. I do not know what that claim is based on because my case manager quickly claimed I was the one client they found this impossible with. I thought really. So often do team members excuse themselves because someone needs rounding up from under a bush for a probation appointment that I think it really cannot be the same guy. On a caseload of the chronically unhousable, some of whom if too long goes before the relative stability of one penal system or the other, will meet tragic and grisly ends. I don’t feel that I belong on the program with my house and address, and some work but to be the most difficult on it is certainly over-achievement in the field of being difficult even for me.

Because this team won’t plan and for most of their caseload cannot plan they have an astonishing capacity to render me speechless. While once the kind of triggering events that would leave me without the ability for some time were almost entirely, with a few exceptions, limited to medical types of situations now they happen so regularly.

The same failure to see my behaviour as communication occurs. The same inability to reconcile the capabilities I have with what they see and what people say I need. I cannot say they try hard based on available evidence.

All initial enthusiasm about me as at least a win in the housing column faded. All concessions about how they handle me which they agreed to they revoked. Most unforgivably for me the agreement that any reduction in service would only occur after consulting with me. 20 hours after that was said someone came by to tell me it had been reduced.

The spontaneous fury that rose in me scares me looking back. It happens. At the time I was attached to a medical vac. treating a complication. In the swift flying of my hands to my face that became separated from my leg but the person leaving this news was one of only two people on that team who even listen so after she was gone and I had collapsed in tears and sleep for days to come. Sleep to ensure more horrors did not happen in the hopelessness of this betrayal and knowing the spin that would go on my behaviour.

As one of the few who treat me as human at all in the way people treat humans I felt guilty it was her who had to view this but feeling guilty for something as uncontrollable as that is not useful or even fair to myself. A few weeks into this program my doctor expressed concern about how much I seemed to be blaming myself for things that are not controllable but while on one level I know it a dent has made with the consistent refrain of try harder. Do better. Be something other than who you are in other words.

For people who believe in functioning labels as static and meaning anything as they are used in autism I am too “high functioning” for the sort of epic meltdown that occurred. This is nonsense of course but that is is their view. A view which they will not check against any book or source from myself, or my doctor (both equally suspect as our versions of my reality are too similar) but they will cling to.

The chose early on to have in a two week period 13 different people see me. I found out at the meeting where I was told that the worst was over and that I would be consulted that this was based on a reality that isn’t mine. They felt without the need to check that in a crisis if a stranger had to attend to me it would be worse. In reality in the kind of crisis they would know about they tend to dispatch strangers anyway but as more of an imploder I would be so deep within myself who if they did send anyone. Was there would barely register. Still no need to ask me before embarking on something which no one left here thinking wasn’t harmful to me.

In the logic of service provision that them coming made me worse. That I spoke seldom and often backed right up as levels of stress increased and no support around the very key issues of eating and drinking happened this was not their failure. In my every day stress they did not reach what seems like the more logical conclusion to me that they should indeed space it out a bit. That they should support the basics of life which was a large part of why I needed intensive support.

Of course that would have meant thinking my behaviour or lack of it had meaning. I don’t really understand how people miss this. I was still in elementary school I am pretty sure behaviour as communication comes up and nearly everyone on this team has at least one degree and if not at least a certificate where this should come up.

Sometimes between my own experience and reading that of others I think newly minted “experts” have every useful thing fall straight out of their brains because how do they get from they are making me worse without wondering what role their own behaviour had in this all the way to seeing me less?

I still don’t know. They keep changing their minds about what drove that decision. At first they said I had so many medical appointments that it would make no real difference. They make my appointments though and having communicated multiple times I cannot take more than 3 in a week that too has been ignored of course.

Now they say I too often closed the door on staff and refused to cooperate so it was a waste. Of course they had made the first service reduction decision after a string where they seemed understanding of the horrible stress I was under and no one seemed to care if I responded or not and most fled without even trying to connect. Those who persisted a bit often found eventually I would respond but that would put them further behind of course so why try?

They had also made the second one all the way to three days all of which inevitably have appointments so no other aspect of my life is supported before any of the incidents they found recent problems. My failure to adjust to a sudden change of plan and being too polite to yell and scream I tried to say I was expecting you in half an hour and I cannot quickly get ready and then do groceries before physio.

I plan my day well in advance and faced with a sudden change how to even find my clothes in the time before physio was in doubt but shopping is stressful. Physio no picnic. Combined with a sudden change and it was not going to happen. Losing all words when my trying to explain was met with well they didn’t have time to do it any other way I shut the door and went and curled up on my bed both in fear and frustration. This was not a person I trusted to render events accurately even as they stood.

Twice in the past month I have been called to account for all the ways I suck as a client. They don’t call it that of course. The first time that autism was a bigger part of the diagnostic picture seemed to upset a person who last knew me 20 years ago when support in the community was no only real but it was possible to have more of it than you cold handle. Any downturn in my health then was handled by a swift return to a hospital setting so while the support team he worked on seldom saw me at my very worst my overall issues have not changed.

I would not have said the equally ridiculous that he too had changed in all those years. Yet it is a source of a conviction I could do better if I was more personally responsible. That I could only be this is we first get a long stable period, regain some skills that were based in another environment and don’t starve to death first seems sensible to me but not to them.

When I said on being summoned for a second time to a meeting that was about the managers responsibility to protect his teams from the horrors of dealing with me so if he could find a way to drop me he would. (Bad luck for him as of course many of their clients are difficult in ways the average member of society would refuse to deal with so there is no mechanism for it)

I had said if it was going to be a long list of my failure to be personally responsible for things I either never had been able to do or hadn’t been able to do in a long time I would go so there was an attempt to re-frame it as a business partnership.

I was a bad partner in my own health. Gee? Really? They quickly refused to communicate by email. When if ever I see my caemanager I don’t know. To this day she thinks a surprise you have an appointment today approach is okay but I am a bad partner. As he framed it as a business partnership I had to point out that those tend to be equal. We would have of course had all the various contractual obligations of both parties well hammered out ahead of and in contract form and when they failed to do so I would use the legal mechanism available to seek recompense from the courts.

However stressed I am don’t say something stupid and hope if I can speak I won’t be able to point out that as a quick change in how they wanted to frame the same grievances I won’t be able to swat that down. Of course this does me no favours as this seems “high-functioning”. I can kill his argument re-framing in under 2 minutes but be rendered speechless over and over by sudden changes or stupid decisions. I must be making up part of it.

That had come up. That I had to be acting to some degree because how else do I make sense? Gee I don’t know because there are lots of autistic people just like me and indeed one of the current improvements in the DSM is that notions of capacity versus demand are right in the definition. But yes it certainly makes more sense to think a person with skills so epic at pretending to be screwed up would do it to torture them rather than say go off an earn too much money by putting those skills to work in the entertainment industry.

I was also guilty of using the protections available to me as a client of a program where some actual abuses had occurred. This was causing a paperwork nightmare. So too was that the nurses who see me for wound care have felt they need to leave a long paper trail as they are not primarily responsible for supporting my eating or anything but that I was losing weight at an alarming and visible rate was something they felt they needed to act on and document that action as my discharge from their regular attention was looming.

In the past 6 years I have led countless volunteer teams in an unrelated industry entirely and being known for high standards I would have fired any one of my team members with even the smallest amount of responsibility for being unprofessional enough to whine to their subordinates or anyone else in a way this epic. Sadly I cannot fire this guy. The government pays him a ridiculous amount of money and he wants to spend some of his time blaming me for their failures to wrap their head around me? You bet I will take that up with people above him.

In the reductivist narrative of my life that would reduce the value of it because of what I cost society what about what it costs that nearly everyone who earns part of their income failing to support me appropriately is paid handsomely to do so? Shouldn’t their pay be based on meeting my needs at least to some degree? Shouldn’t as much time at least by spent meeting them as meeting about me and deciding what the catch phrase of the month is about how horrible I am?

When you are a child in the best case scenario you will have a parent who is apologetic at the failures of people to realize you have competencies and however you communicate your needs or fears it is communication.

As an adult there is no such protection. In the health system playing well with others is valued so they almost eerily form visions of me that the bulk of the team can recite word for word. The people who refuse to do so still indicate they need to be a part of the team because they are among the most disposable.

So I can’t speak out with the few who do listen because I don’t suck enough as a human to make their work harder which it is apparently if they speak against the group think about me.

When I was just entering adulthood I had notions of a life nothing like this. I would collect degree after degree and that I did not remember to eat it would not matter. Droves of students hoping to win favour with me would always be around to supply useful things like food and drink whether any of them set themselves apart from the herd or not enough for me to learn their names. I had seen this very thing with professors I knew did not bother with such trivialities as the names of those eager to be of use as one said to me he remembered me and went on to say although he is required to teach two courses and supervise multiple graduate students that was true of less than a handful of people. An echo of how lonely my father had warned me when I was still quite young life would be.

Of course life did not unfold according to a plan that would have seen me live in the seldom labeled as such but fairly sheltered environment of academia.

The sadness of the life not accomplished is a sadness but it is not frustrating in the way the failure for things to improve for autistic people is.

I have multiple physically degenerative issues and the prognosis on one of those seems to be in mid revision to even more grim. There is my autism. If I had never felt any grief or sadness or hopelessness maybe I would not somehow also be considered a mental health issue but as the service providers of easiest access they are hard to escape.

My entire life for months has been lived with the horrible knowledge if they do not improve or try in any way to meet the needs they indicated they understood I had I might die. In my most miserable moment I think the paperwork nightmare explaining how someone referred with that as one of the critical issues in need of intensive support dies on their watch is some sort of revenge but I would prefer to live.

During the meeting of the long list of ways I suck at being a good partner in my health I did eventually flee. Fight or flight kicks in. It’s something in itself worrying as a few times it has kicked in and where I might wind up was potentially not safe.

That day the final time I was ordered to sit down I didn’t. I know they can kill you with their words. The hopelessness of them never believing anything real about the real you while simultaneously refusing to consult my doctors notes on the matter is too much.

The inane complaint I am somehow not trying hard enough when the amount of effort it takes to be with them for a single minute or to have persisted through the worst 27 months of my life how do I respond?

If effort was the solution I would be so danged healthy I could work on my agenda for assuming control of the entire planet… As dictators go I would be awesome truly. When I was in politics while an awesome background person that I was unelectable was a given. Yet one never gives up ones hopes of power and how swiftly I would reverse all the expensive ways we fund abuse and ignorance would be a help.

One of the strange problems that goes with my autism is I can in fact communicate well and in a number of languages. Except when I can’t but somehow the times I cannot or even that a communication disorder is consider a key part of it means no one has to listen to me. Any issue with communication is always mine by definition. The well paid people who currently completely refuse to even try to communicate with me don’t have to. What would be the point? I am impossible.

If it were not that the people who do not find me impossible are all pretty similar as far as having the same values I live by I would start to wonder. The depressing thing is that being honest to the degree I expect and ethical is not the majority position for the people with power over me. Yelling at me to “Speak damn it” and then letting me out in traffic while crying so hard I nearly got mowed down is in group speak assertion not abuse.

That’s my reality. I don’t know for how much longer it will be because if I actually manage to fire this team my posterior will wind up in a place where I can not have the things that give meaning to my life. Equally unsuitable but somewhere along the line my value as a person around here sunk so low that things that matter a lot to me don’t matter at all to those who make decisions.

The difficult thing is they have not been able to strip me of my legal competence although two people have warned me that as soon as my current doctor is transitioned right out that will be quick to remedy and I know they are right. It can be half way removed by telephone and whatever they say about that not being enough that almost any doctor would simply sign off on it being fully removed without much worry about the ethics of it is certain.

I sometimes think beyond the fact I have yet to pull of a nice short blog the whole depressing reality of my life can’t be very appetizing for people.

That little alters in some fundamental ways from the tiny child I was once convinced it was my kindergarten teacher about to be in deep trouble for the scandalous way things were run in what didn’t seem very school like but which I was powerless to communicate and equally as powerless when locked in a battle of wills with a larger adult (unlike my parents she didn’t have the sense to know she should have surrendered as soon as she saw I could walk) . To now. In between there have been times where things proceed in ways that I would want but the underlying fundamental reality of how swift people make the wrong decisions and judge you in all sorts of ways hasn’t changed.

There is no point in screaming because while understandable that would violate the rules of the health authority. They could then totally deny you services until you were a corpse. Well granted I would have to scream specific things but it is a good thing that so seldom have I reached for profanity in my entire life that even now if I yell at all it is more on target of what is true at least until I flee.

I never try to judge life of any kind but the ongoing trauma of having mine judges and devalued combined with the knowledge that any time I fail to behave as expected that will be one more grievance in the long list against me makes me more than sad. I am not even sure I know a word to describe how I feel.

That the every day usually unnoticed by others because they take place away from eyes that might care frustrations of living this way are difficult. I cannot imagine being anything else of course and I do not think because people so horribly fail to meet my needs that that makes autism tragic as meeting them would be simple if a paradigm shift happened where however I was communicating I was valuable and when that communication was shutting a door or fleeing as fast as a person as physically challenged as I am at the moment it would still have to be taken as not me behaving badly but as communication about an intolerable situation. A failure to meet a need.

It’s never picture day when you are an adult but the mindset of those looking at your behaviour doesn’t seem to have changed.

Quiet No More

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It has been pretty silent here. In the past month I have attempted a few posts that wound up not being something I felt I could put up for one reason or the other.

On the first of May I went into hospital. I was depressed for one thing and my doctor wanted some tests one to try to qualify me for the ever elusive services so we would not continue on the wheel we had been on of function worse services increase, first sign of improvement services decrease, x amount of time passes no appropriate services at all ad then repeat.

He thought it would be a few weeks. Since they can’t actually treat my depression I don’t think he expected to try too hard on that but they ran a lot of test and scans while they were at it and I was a total and complete mess. Months of dysfunctional eating had screwed up pretty well every thing in the chemistry panel and so on.

My doctor couldn’t quite resist one horrific kind of treatment which I may or may not describe later. He’s a good man with good ethics and I do believe he wanted to help and was probably subject to doctor peer pressure a little… I don’t know. It was awful and harmful and while he did stop it sooner than some would have, saying he thought it had been more harmful than helpful it’s still hard.

So then he thought well let’s eliminate some stress and get some more health things taken care of. The problem with that approach was of course they kept finding big things not small things. I came out of hospital looking like I certainly still should be in…  My knee surgery came up while I was still in so when I finally was wheeled home 3.5 months later it was with a brace on, and an indwelling catheter and a host of new medical woes to be looked into in the months to come.

Through all of this 18 months from when not being able to deal effectively with change blew my life so course until now I have sometimes felt guilty when I blog or read blogs. I felt like I had a dirty secret about my autism that I just realized while commenting elsewhere isn’t so awful.

When there were autism positive flash blogs at a time when I knew mine would likely cost me my freedom at least for awhile again I couldn’t be possible. Off and on for the past 18 months I have felt so angry at my autism. It feels taboo to admit it. Tonight thought I realized why it shouldn’t be. Why I had probably been ashamed for no good reason…

I have a lot wrong with me. Probably in terms of disability the next most serious is my arthritis. I was replying to a comment on a blog about how the response to the attempted murder of an autistic child was dehumanizing to autistics. Despite that being the central premise of the post someone commented calling the victim a burden and out came my deep dark secret.

I was trying to explain why it is never okay no matter how much harder than average it is to lose sight of the person’s humanity. That in my own case I had done that a bit to myself this past week apologizing for being a source of stress and the family member in question wrote back to remind me of everything else I was. (Considerably more positive than stressful thankfully because in my depression I had lost sight of that)

I admitted I get mad at my autism. I do imagine that without it 18 months later I wouldn’t be hanging on by less than a fingernail. It is big to move for everyone. One of the higher things on the stress scale I gather but millions of millions of people do it all the time and very view are still totally messed up 18 months later.

Still the anger I feel about the degree to which my autism makes dealing with change not just difficult but for nearly every kind of change close to impossible isn’t really that different from the anger I feel when my arthritis eats up yet more of my mobility and there is a mismatch between what I think I should be capable of doing and what I can. In both cases you feel angry, you reach acceptance and then you move on. In the case of my current upheaval I do seem to be breaking records in the not able to move on category but that does not make me less than human.

I had felt like a traitor to the cause I think at times when I felt anger or even fear when it came to my autism. Sometimes I feel like it may have cost me things I dearly wanted even though it might be more accurate to think a medical system that makes artificial barriers when it comes to autism and decides who gets support based on things that don’t have anything to do with their actual autism could be a culprit there.

Very recently someone who has never met me made a decision about the only service there is for me at the moment, The  only service outside of hospital that ever had any success but this administrator has never met me. She concluded it wasn’t clear enough the service even helped me and therefore didn’t want me to have it. In the end she had to agree to every other day for a month. Her reluctance to have me seems to have trickled down to staff who previously were capable of treating me like a human but now focus on that date and making sure I don’t get a second too much of service. Somehow this week a a doctor’s appointment they had nothing to do with and Rosh Hashanah counted as service so  saw them all of twice not the three to four times we should have.

I cried about this when I heard. Right now things are very tough for me most of the time I am alone. Without services I have no chance. I felt angry too as since I had very noticeably gotten worse each time service from them dipped below about 4 days it couldn’t be clearer I benefited. My case manager pointed out I don’t get better and my affect doesn’t always match how I am feeling.

I felt discriminated against based on having multiple disabilities. My autism causes the affect mismatch. It sets up this weird situation where if I fall into a routine activity I guess I just do that activity and the other concerns are absent for a bit. I look better but when asked how I feel – the examination of which isn’t part of the activity- I have to answer truthfully and the answer hasn’t been good lately.

Apparently as far as depression goes it is very rare that a person doesn’t respond by the 4th medication prescribed so we have a support system that is geared pretty much entirely to a quick chemical recovery and I don’t fit. My autism gets blamed for the medications not working rightly or wrongly. My autism gets blamed for other interactions with the various teams being tricky (rightly in those cases I suppose) but is it fair that while extremely acute my level of service was based not on that but by the perception of someone who has never met me? Even the team members who don’t especially like me know about the affect mismatch and I would be surprised if anyone who ever worked more than 6 times with me could say with a straight face I did not benefit.

No I don’t get well. Part of why I don’t get well in a nice circular way is the continual stress over services and support. Part of why they don’t see me get well is even at the longest time frame they offer they are not around long enough to see it. With this one I have wondered if I will see it.

My battles are not that different of a parent with a child with autism. Services and support being the usual things that drive people to despair. I get it. Because I am also depressed unfortunately the lack of those things has caused me to want to give up but I have done the appropriate thing when that was the case. The option when you feel that bad is not a good one. I imagine if there was a separate child me I had the charge of and I could not cope it would not be nice to have to say as much. To accept whatever might come of saying this is too hard. Something awful will happen. However it would be the only ethical action to take.

So now my dirty secret is out. I sometimes am angry about my autism. I sometimes wonder what my life would be like  without it. I am not quite sure having typed something similar in a comment why I felt such shame about feeling like that for so long because of course it is so similar to every other condition I have that is a departure from the “norm”. If it is okay to cry at the mobility arthritis robs from me well why feel like a traitor for crying sometimes about my autism?

Part of why I was hesitant to blog again is everything is still in turmoil. I have resumed some of my usual activities in creative ways for now because of the immobilizer on my leg. I have resumed my part time work although I do it from bed. (Don’t get any fanciful ideas about what I do for my work based on that)  I am doing my best but it’s been stressful and hard and I know my doctor isn’t sure what his next logical move is. He’s semi-annoyed at my orthopedic surgeon for not doing the first kind of operation he planned. I would have been immobile longer giving him more time to scramble to find something better than the 100 minutes of really low quality house cleaning that will soon be all the support I get period. Oh and the 60 minutes a month of my shrink, various and sundry other specialists slicing and dicing my body etc…

Still and all although I spent the bulk of my life identifying as an alien within myself to get me through the day, and even though I had a doctor who eventually announced I was right about that due to him concluding the sum total of everything different about me must be something in and of itself and wanting to look into that I am 99.99 percent sure I am human. While the occasional twerp has compared me to an animal and so forth the only one who gets to take away my humanity is myself. I do reserve the right to opt out of being human when too many humans appear to be doing and saying inhumane things.

People can only do what they can do and I have not had the energy to be out there too much on the outraged front as far as the latest event goes. I know there will be more until the culture we have changes entirely. It has to be challenged every single time any rationalization is made for killing a person based on well anything. I was going to say disability but recently someone was murdered in a brutal way for being transgendered and that is not okay either.

It is possible to say no it’s not okay to murder because your child, or charge has this or that and the mean school district or mental health people, or various other service providers are being insanely difficult. You can in fact acknowledge the many ways we could build a better system without linking the need for that to murder. We need better support in my own case not so I don’t succumb to my depression and give up totally but so that I can become a tax-payer. I may score in the totally hopeless range in the scales for daily living and adaptive behaviour but on the IQ test we had quite the opposite score so how did I get to be 45 and still be a drain on the taxpayer instead of paying taxes? It’s easier?  I fall through the cracks? Those questions are the reasons I am told but I phrased them as questions to highlight how silly it is.

My bottom line when I try to explain why my current life makes me unhappy comes down to it lacking a lot of the things that adults take for granted their lives will contain often without too much effort. If I thought all those things were truly impossible I would not get upset about it at this point. I would make my peace with it much like I know I will never climb a glacier again. It is knowing I could do so much better with support and knowing how horrifying my life is without it that makes me upset.

Ultimately I guess I cannot dictate to people as much as I would like to that whenever they see a rationalization for murder they challenge it.  For anyone but myself I cannot say please you can say how they system needs improving without linking the current state to an excuse for murder and so it goes.  I took a lot of tests this summer. Blood was drawn maybe 50 times and the one thing that did not come up in all those tests is that I lack humanity so please don’t rob people like myself of it with thoughtless comments.

You Need a Mommy

by

I have been quiet. Things have gotten more difficult and my capacity to cope with anything had taken a plunge downhill. I did not think it was even possible anymore but one should never wonder how much worse things can get it seems as the answer always seems to be that they can indeed get worse.

 The wisest words about my situation were spoken by a three year old Friday morning, I had agreed to look after him so his mother could attend some kind of course near where I live. Since the plan was for his mother to drop us off at McDonald’s so I would at least eat and he would have access to the play structure or the equally as interesting swivel chairs she popped into the bank on the way before leaving us for a class.

“Do you have a mommy?” he asked. Since he was not distressed I took this for a question and not a pronoun issue. “No,” I said then as that seemed inadequate I amended it to, “ I had a mommy”. He did not veer into issues of why I didn’t have one. I seemed to be confirming something he suspected so he seemed quite satisfied with the answer. “You need a mommy,” he declared with conviction.

That is no doubt the most succinct summary of my situation that there can be. If we define “Mommy” as someone who attends to your basic needs without question, who while she may be exasperated at times by those needs still seeks to fill them without faltering in her devotion that’s also the best treatment plan yet to be devised. The fact is I don’t have that kind of “Mommy”. I never did. It is certainly only that level of someone else looking after the details that would remove enough stress to just get better at this point.. There’s no such figure in sight though.

I do need a Mommy. A three year old being able to see that clearly is about the closest thing in my life to a mommy like level of insight. While his own mother worries about my eating and lack of laundry access enough to do something about it more helpful than telling me to remember to eat, part of the job description of Mommy no doubt includes this sort of cutting to the heart of the matter. He would already be an excellent Mommy if the task were not beyond his fine motor skills, his height, and certain legal issues. Also let’s face it a Mommy who has to be sold on washing their hands and holding your hand when crossing traffic is a bit of an iffy proposition. Still he correctly identified a need and a solution with 4 words. That it’s an unworkable solution doesn’t make it less correct. I have been offered reams of unworkable solutions by much taller and learned people than he is. We all grow out of the clarity of being 3 I suspect. There’s a wisdom afforded to those new to the world where a lack of experience with how the world actually works gives them the least cluttered view I think. I only suspect rather than know that people grow out of that clarity because it seems to take some residual 3ness to accept what is said as wise not baffling. To not dismiss it because it comes from someone who rarely said anything 6 months earlier and still is more prone to ear piercing tantrums than one might hope.

I do, indeed need a Mommy. Perhaps they should spend some of the money they currently spend documenting how my not recovering from my depression is somehow my fault so they can excuse the numerous failures to use the resources that do exist to hire a Mommy for me. I will wash my hands, without prompting in all likelihood but the rest would at least in the immediate future be up to them.

For the past 16 months in the wake of my world essentially falling apart due to a change far larger than my capacity to handle it and subsequent medical and bureaucrat errors compounded with the kind of life that seems stuck on the setting of pour on the bad things I have been treated to far too many people weighing in on what I need. Most have so little clue about autism that they can’t even see how ludicrous their simple solutions are and for some reason I am expected to listen to the same non-solutions get voiced by whoever it is that is dealing with people at the end of their capacity to cope.

One such person just left. I know how they see it. They see me as unwilling to do simple things like remembering to eat. Clearly to her and 100 like here because I have been capable of caring for others this is a choice on my part. I have ensured others are fed, bathed, even continue to breath at the extreme so not being able to meet my own needs has to be choice. I just need to choose to be better and apply sufficient effort. We will have to overlook where I would be if effort were sufficient or any of this was an actual choice. We will have to overlook the judgement that comes as part of these non solutions. Implicit and sometimes quite explicit in these solutions is an accusation of not trying hard enough, not wanting to be well, of exaggerating how bad it is and so on.

It’s hard to hear that you are not trying hard enough when you have tried and tried and any time you were making progress supports were withdrawn abruptly and care plans overturned. Apparently if I only wanted to I could replace all that with reminders from my tablet or a schedule. As if I have not spent my entire life experimenting with variations on that theme and don’t know that I have to already be doing much, much better than I am for that to be even a stop gap solution. Stop gap because even at my best my I don’t get close to desired capabilities in many areas.

I live with contradictions. Wanting to be an effective self-advocate while going to great lengths to try to blend in even when I know full well I cannot even at the best of times. Accepting my autism on an academic level, believing that acceptance and actual inclusion trump faux awareness but being a big barrier to my own inclusion.

 The past two weeks were even worse than normal. Last Friday night had me approach “my” seat at the Jewish Community Centre where we hold services to find someone in it. Some weeks it has come up I am coping well enough to handle this. I do after all know it is irrational but for every place I ever sat more than once I have a seat.

I arrived with our congregation president. She’s quite assertive and willing to make a scene which I desperately did not want. I froze on seeing my seat occupied. I was not able to ask if the person could shift one down. I’ve asked before but it wasn’t possible even before I retreated to the wall to contemplate my several all seemingly impossible choices. My friend first tried to convince me to sit where she was going to. I could only shake my head. I knew what would follow would be a fairly loud eviction from my chair by her of the interloper and feared I would have a meltdown that was a bit more obvious than the sort of implosion I was having then that had me rooted in place and incapable of action or speech but at least not in tears. Fear of a scene got me to the kitchen where as luck would have it the president’s partner was doing some task or other. She called out where I was and instantly had the insight I might be hiding but it was too late. My seat was indeed free Further escape to the bus was not even an option. I had been spared only listening to how she put the eviction.

 That however much I dreaded this action that this was actually the best solution should be stated not just because I know the person reads my blog because any contemplated other action or reaction would have made things worse. Had I fled or wound up in tears I don’t doubt both that I would have worried my friends more than they already are and in all likelihood had a rabbi on my doorstep instead of an email from him during the week I don’t doubt. This way much of the rest of the evening played out in the usual way.

 I returned to the room. I sat down next to the interloper who is actually a perfectly nice man when he is sitting somewhere else… He, I think trying to be helpful and inclusive, said the sort of thing people say when they think the difficult part of change is not understanding that it happens but coping with that it has happened. “Usually we start on page 120 but some weeks it might change.”. He may have even been worried that this week would indeed be one of those weeks rather than seeking to inform me of the obvious. I am not as invested in starting on page 120 as I am as my chair and the blue cup though. It’s almost inevitable that we will in any case.

In the aftermath of my implosion and escape I was still in very concrete mode so all I could do for 30 seconds was wonder why he was explaining the order of service to me 20 months after I started attending, Then I realized he was trying to be helpful but I had already managed to sound a little annoyed I suspect when I had managed to get an, “I know”, out of me,

I didn’t know what to say really, It was thankfully a day where the theme was sombre enough that eviction from the chair he chose first wouldn’t I hoped stay in him mind long. I wouldn’t have been able to articulate why I could know that someone might be in my seat and simultaneously be bothered by it or why on some days I have the capacity to sit elsewhere and cope with the dissonance that arises and sometimes even surplus so I can still get something beyond coping from the evening. Our rabbi who’s rabbinic sense either tingled about me or who more likely was told I was not doing well emailed something about how when the wine glass is already full one drop is enough which again is something I know but did make me feel a bit less guilty.

I so wish that this fact that things can and do change that had eluded me. That it was new and transformative knowledge that having been given it I could work with it If only it were knowing and not the varying capacity to cope that is in the wind. I would have transitioned seamlessly to a new home and not gone through any of the past 16 months. This not so missing piece of information presented in what was probably a sincere attempt to help left me mystified. This was something I know. Oh how I wish it was new and exciting and transformative information that I had just been missing. I love information. Sadly the most interesting part of this piece of information was it being offered up.

A similar approach could be taken with the wine analogy. I know exactly that something very small can be the one more drop that makes my issues less invisible and more visible. I struggle with the competing desires of really accepting my own autism enough not to hesitate in areas where getting my needs met means making a scene and being quite private and wishing I didn’t have needs that were not met without some level of hassle and intrusiveness. The difference being that however tritely, it sums up my reality of a life spent too close to the edge of capacity, it did ease some of the worry about my needs being a hassle, or worse beyond comprehension, I suppose something cannot be in danger of seeming trite without also being very true. Even when it is truth you know too well it can help to hear others frame it. I usually think my self-esteem is actually quite good but truthfully that tends to be in areas not impacted by my autism.

It makes no rational sense at all to be more apologetic about a melt-down over a chair than the bus kneeling when it picks me up but that’s part of the ongoing contradiction I live with. As is trying to encourage actual acceptance and inclusion while having as the biggest barrier to inclusion my own desire not to be difficult. I don’t have the kind of in your face kind of bravado some seem to have where their diversity dang well better be accommodated or there will be heck to pay, I can have it for official, tax payer funded entities for some reason. I expect official support to accommodate me. It doesn’t but that doesn’t lessen my expectation for some reason, It again makes no sense as of everyone in my life the group most likely to put themselves “out” on my behalf are this very group. They have shown it over and over but one can loathe Voldemort speaks for presenting autistic people as a burden and simultaneously seek not to inconvenience anyone. If I was someone else I would probably blog about how annoying I am for that contradiction. Wait I guess that is what I am doing.

 As my young sage worked out if I had a Mommy she would do all that heavy lifting for me. I have seen mothers ferociously advocate for their young over much more trivial things, I have similarly advocated for other young charges without a drop of regret for being a bother. Did some one really ask me loudly, “What’s wrong with that child?” when boarding the bus carrying one of my charges. Strap yourself in ladies and gentlemen because the bus ride is about to get a bit bumpy. Did a similarly enlightened citizen really express when passing a friend and myself and the same young charge on the beach how much better it was in the old days when people enjoying their day didn’t have it ruined by looking at children like her? It’s about to get educational. Did her companion while eying my friend who was native really nod at her and mutter something …? You get the picture. It didn’t wind up educational My friend was used enough to racism to find it amusing on some level and pity them for the fools they were and so was expending some effort to keep me on the blanket eatin g my fries and not running down the beach providing commentary about who the real blight on the day was. The offending child had not been seated a bit further up from us and was entirely too absorbed in digging in the sand to need to do any of the explaining of the too frequent kind. So we moved on.

 My entire life I can be a lion for other people. I can be that lion even in areas where it matters far less than for racism and able-ism. Heck mess with “my” gamers and anyone who has worked with my knows that my rants will be somewhat endless.

 I think as much of my silence post the explosion of followers after my post about awareness came from this contradiction. I was overwhelmed by the sudden unquiet nature of this corner of the internet, my life did take several turns that meant adding the expectation I write on top of everything else I couldn’t deal with was too much but I also felt like a fraud of sorts.

 I’ve said my acceptance is always an ongoing thing like pretty much every other thing about my autism it defies quantifying. Compared to when I was 20 and Data was my role model and my goal the same as his – to outgrow my programming I am a model of acceptance. Having realized at some point that Seven of Nine was the healthier role model that was huge growth. For those of you somehow unfamiliar with Star Trek two helpful bits of information. First if you actually know me in real life or at somewhat close to me in the ways people wind up close to each other on the internet it is probably best if you not admit this. You won’t exactly be dead to me but you will enter a category of people I have some doubts about. Second in the interest of understanding what I am saying Data was an android who was perpetually seeking to be human. A high tech Pinocchio who for a time seemed to embody my reality in a way that stirred me.

 Seven of Nine was a human who had been assimilated by the Borg. Then rescued by the crew of a later series than Data was on. I won’t trouble those of you without a background in the mythology of Star Trek with why a Borg is a better role model but it boils down to her being quite different from the crew she found herseflf living among despite a certain similarity. She had been human but some elements of being Borg could not change without killing her. Having been Borg since childhood was it seems as pervasive as autism is.

 The Borg value knowledge and seek perfection. While their method of getting both is a bit horrifying one can hardly argue with the goal. Seven herself is a logical, very rational, intelligent woman. She sees the humans around her and seeks to be more like them in the ways that she values but retains her sense of some of the things she values highly no doubt as a result of a life as Borg as being desirable and worth holding onto all the same. She grows emotionally but while she has doubts about various aspects of humanness those doubts are expressed in far healthier and realistic ways than saying grabbing an improved emotion circuit. She is able to function as different in a noticeable and to some degree even feared way (her perfection as a role model having grown I suppose as fear of autism has grown) and still be valued by others and herself. She does not approach a situation with the mindset of one who’s difference automatically, even to themselves makes them less.

 Some may be angry at being conditioned to approach very key parts of identity this way but conditioned we are and it makes some sense. It is adaptive to some degree to know the ways in which you differ and take them into account the problem really is the internalization of the message the undesirable difference is always on the side of the labeled.

 The Doctor was more prone to morbid reflection on his different status than Seven but while she had more life threatening malfunctions of her all important cortical node than he had variations on crashes she is more at peace with her reality. She grows towards that which she values of what she sees and is clear on what she does not view as worth pursuing. She bends over time on a few of those things but overall her sense of self worth is not negatively impacted by being who she is. Unlike myself, who finds myself apologizing for a far more reasonable accommodation for my autism than what her crew goes through to get her spare parts she doesn’t tend to apologize for that much greater hassle. She occasionally expressed some wonder that they would but her basic right to exist and by existing have her needs met without too much quibbling about how inconvenient those needs are is an underlying assumption.

 I am not really sure if I will get to that point in my lifetime to be honest. It’s a bit reflexive even in the most accepting crowd to feel embarrassed by the joke I don’t get or the entirely irrational yet absolute need for the comfort of sameness. On the same Friday that my pint sized friend correctly identified my need for a mommy the opinion of the congregation about which tune to use for a prayer was expressed in terms of same of something new. My immediate and strong assertion of same drew some looks but that included one from the person leading who seemed to realize I was so vocal that it should be the same it probably should be. At times when people have really pushed the matter, I have articulated that given the fact that change is a bit inevitable my preference is for them to pick a few things and for Pete’s sake not change pretty much every element of the service, They are a bit self-regulating because the prayers inevitably sound better with the usual form and tune so without my having to push the matter at all a too heavy dose of change tends to be followed by months of barely deviating at all from the usual until people have forgotten the horrors of when they tried this tune or chose this prayer over another. I suppose there is some automatic comfort in knowing you are with a group of people who when faced with the question of why we do some fairly strange things are about as likely to answer with a shrug and “tradition” as a lengthy discussion what various scholars say on he matter. Being a fan of both it’s hard to go entirely wrong.

 That at my worst I feel I have to apologize for being me in the setting most likely to accommodate for me is sad for me. I suppose if like the various bearers of support the government dispatches they were actually unwilling to accept me it wouldn’t bother me at all to have had the please don’t make a visible scene kind of reaction to what was a very simple conflict between a need at an extreme because of how badly everything else was falling apart and someone else simply being there first.

 In a setting where I am included enough to be obviously to others part of the “in” crowd despite being a noticeable outlier makes this failure very clearly mine. Another contradiction. Absent the rage I can have for the irrationality of entire systems that cannot take into account the existence of a person like myself. Being angry at entities as faceless as governments and health authorities or Voldemort speaks is easy. Seeing the ways in which I am an obstacle to myself considerably harder. Fixing that issue having identified it, as I say a work in progress often undone or mostly undone it seems by whatever else life is serving up.

 It’s much harder to say I create additional issues for myself by not accepting my autism on the level that some people in my life are prepared to. I know some of that is a product of how badly I am coping overall. Some however I think is always with me as an echo of years striving to be what I could not. I have for the most part ceased seeking the impossible and even identified the way in which being “normal” might be worse but it I a bit of an infinite acceptance loop. Having overcome trying to overcome my autism I am left trying to overcome apologizing for that which cannot be changed. In better times that would be such a faint echo as to not register much on me mentally but at a time when a child can identify that I need a Mommy that urge to not be a bother, to not have people need to alter anything for me is manifestation of non-acceptance. While countless articles will blame this reflexive devaluing of myself on the society that creates and nourishes it there is only some truth to that. It is true messages about your non-normative reality get internalized. How could they not when the entire format of you life has you as a case in need of management rather than a person? When at an extreme by being able to articulate some of your struggle you are seen as a danger to those who are “really” autistic simply by doing so. People might believe your life isn’t 100 percent tragic if you describe it. People might see that even at the grimmest of times your life is a life and has value and meaning not just to yourself (which should after all be enough) but to others. Still a life lived having to state those very things is taxing. Your default position shouldn’t be having to justify you life as possessing value despite the dificulties. It’s tiring.

 If I could lay all my own lack of acceptance solidly at anyone’s feet I would be off the emotional hook but it would not be honest. I don’t know if I will live long enough to be in a state where I don’t feel apologetic for my less cleat cut needs. Lacking a Mommy it is my responsibility to articulate what they are. One would hope that when presented with a situation where I can’t do that and someone else is both willing and able to champion my needs I could just accept that without embarrassment and without apology. I can’t though. Not right now at this time in my life when so little is certain about the shape of each day or my ability to endure it.

 It is always the small things that we fail to account for that wind up becoming big at a time like this. The bursting into tears on the bus when one cannot conceive of either going on or ceasing to go on. Well okay that seems like kind of a big thing but the crying on the bus itself is small in the grand scheme of things. The trivial change not coped with being harder to predict than the huge one that most would by now say I would do well to avoid. I need a Mommy and while some might say I have a small army of such things standing by of both genders standing by to secure things like my chair, demanding that I eat, and so on that is somehow not quite as comforting as the child’s version of a Mommy entity that can deal with everything for you and about you withought their devotion to your needs faltering. The presence of so many people in my life tackling those practicalities from time to time should make me more certain it is okay to be as I am.

The kind of conviction I have when I place it in a spiritual perspective that it has to be that I am as I intended and by extension then my life has value equal to other creatures is sometimes starkly lacking in my day to day life lately. I suppose the real advantage of the love of a Mommy like entity over that of G-d is like the kneeling bus it’s concreteness. When you are young enough to be constantly with your Mommy or people Mommy enough like to be an acceptable short term stand in for her you always have that care and concern, and love and acceptance of the miracle you are being reflected back. When I am feeling only slightly better than I am now I can quite easily access the less tangible form of love and acceptance and renew myself on that but right now even that is a task beyond me. So I do in fact need a Mommy.

Image

Just a Dog

by

During the days after finding out about my mother’s death and actually being able to get to my family I had one source of comfort. The same source of comfort and support that can nearly always be found within a few centimetres of me: my dog, Shadow.

Years ago when I was still in university and doing very well with the academic part but having some anxiety during the busy time between classes my doctor wanted to get me an actual Autism Dog. The notion of such a thing was still new to him and he thought it would be enourmously beneficial and given I don’t really react typically to any medication but do love animals it seemed logical to him.

I was still in my phase of if I try hard enough I can be normal though or at least so closely approximate normal – especially at school, that I wasn’t keen. I did desperately want a dog and didn’t live in a place where I could have one for several more years but between wanting to look normal and thinking that for me any dog would likely do whereas for the types of kids (and they were always kids) being featured in stories about them they did indeed need a highly trained dog so it could go to school and so on.

It would be years before I got a dog. I was never entirely pet-less even if my lease said I was. I had gerbils, and a mouse and when I moved somewhere where I could have a dog but hadn’t accumulated the money for a dog, rats. I wanted to be sure when I finally got a dog I could pay for emergency expenses so long after I could afford to either buy or adopt a dog I was still saving.

Eventually I got a dog. A friend in Alberta, I had met on a channel for support for autism (primarily parents on that channel) found one in the paper and I had a sleepover when I went to visit my family and the dog clearly chose me. She was a good dog but we had been lied to about some of her life history it seems and there were numerous health issues. She was however so devoted to me I often worried about the next dog. How would the next dog ever compare?

The impact of that first dog was dramatic and immediate though. Whereas before I was often hospitalized for depressions that the powers that be had deemed untreatable due to my autism, and actually offered a cingulotomy as my only hope (a cingulotomy in case people wonder is in some ways more horrifying than a lobotomy). Post dog I was never hospitalized again for that. (Well until my no good. very bad year)  There may be a few contaminating factors in the data there but the dog played a huge role without a doubt.

When my dog, Tiny was her name, died I knew I could not be without a dog. I was torn between feeling there was an appropriate mourning period where a new puppy might feel like a replacement and the cold, hard knowledge that without a dog my life would head steeply downhill. I could feel it heading that way when in my pain of losing her I had no dog to reach for.

Slightly less than a month after Tiny died I got Shadow. Not wanting to be saddled with an unknown history I unapologetically got a puppy. Countless semi-anonymous people felt they could take me to task on getting a puppy when so many dogs are abandoned but I said that after having gone through some avoidable things with Tiny I wanted any errors made with my new dog to be created by me, and known by me. So if he didn’t get care he should have had, or wound up with severe separation anxiety or whatever those would be problems that had their origin in my care of him and I would then live with them. Sorry any unmet rescue dogs I never considered but this was my health at stake which I had to place at least equal to yours I am afraid, and so a brand, spanking new puppy, with a nice health record of both him and his parents it was. It wasn’t the politically correct thing I suppose but I am seldom in danger of doing that anyway.

Shadow’s name is a source of embarrassment to me. I had had gerbils named after mythical figures and rats named after physicists. A teeny, tiny entirely pathetic runt of a mouse I bought during a moment of extreme crisis (my suicide prevention mouse) I had dubbed Sergei Brun Mussen Von Federovsky in homage both to hockey and a linguistic game my maternal grandfather used to play.

With Tiny I had an excuse. She came with a name and was old enough a change would be hard. I would inevitably on being asked her name follow up with the fact I didn’t name her. I did name Shadow.

Oh how I didn’t want his name to be Shadow. He’s black of course although he would be no less Shadow like in another colour. It’s the 6th most popular dog’s name in our municipality among registered dogs and indeed there were no less than 4 on our block (granted it was a large block but still…) He was simply unquestionably my Shadow from the first moment.

I didn’t go to get him the day I wound up with him. I had my eye on a female in another litter. My father had told me that females always make better pets and that combined with alert and active dogs were probably smarter was about all the information I made my decision with in the end. I had read some stuff on the web but it didn’t differentiate that much from what my father said, so it seemed like a female it would be.

My dear friend, Jim, who has since died drove me with his wife. His wife, Shirley had been against my getting a dog in the first place. Atypically for her quite verbally against it as her reasoning was I could barely look after myself how could I look after a dog. She admitted she had been wrong within a week of my getting Tiny as she happened to drive by me walking Tiny and had never seen me look so happy in the entire time she had known me. A convert to the notion that a dog was necessary she was keen to be a part of the process.

I noticed Shadow immediately. Of the puppies only he was at all alert. It could be the rest were sleepy because they had just eaten or whatever but Shadow watched my every move. As I dutifully studied the dog I had intended to purchase my eyes kept going back to him. I explained my dilemma to Jim and Shirley but they had not been what you call dog people and had no advice beyond thinking it was me who had to live with the decision so I had to make it.

I asked to spend some time with Shadow thinking I could get him out of my system, after finding no one had expressed any intent to buy him. His sister’s had been hotter commodities and although all but one was still there they were all spoken for. (Maybe everyone had fathers who taught them that a female makes a better pet) Not that his sisters were at all tempting. They were as sleepy and as disinterested in me as my intended dog and her litter-mates.

I took Shadow out of eyesight of the other dogs which is ridiculous as the puppy I had come in for couldn’t know the grand betrayal in the making. I held him. I sensed my plan to get him out of my system or to discover something disappointing about him was not going to work. I set him down and he was adorable as he promptly scrambled to try to position himself on my shoe. I thought, it can’t be he actually knows how this works and if I am able to walk away from him he will never see me and I wasn’t vain enough really to think in the grand scheme of things that should matter too much but to Shadow it seemed to.

The inevitable followed of course. It feels odd to me to buy a dog as I don’t look at myself as owning a dog but being in a partnership. (Shadow has written somewhat extensively on this in his own blog – okay he gets some help with the typing and translating from dog but still http://www.dogster.com/dogs/914607) He was paid for since my feelings about ownership don’t enter into the need for a transaction. We went and got some things that would be  uniquely his and not passed down from Tiny and then took him home.

I had never had a puppy of my own to train. We had dogs always growing up but my father looked after that and the last dog that had been more mine than the family dog was one that I had walked after school for her whole life, as her people were in busy professions but came to me fully trained. Even overly trained for the life she wound up having. But Shadow and I both proved pretty trainable.

The first night he was home I slept with him in my hand. He wanted to be with me and was having none of this crate business and even though I had read umpteen books on why crate training is the greatest thing since… well who knows what but I am a single human. There is no greater feeling in the world than a dog snuggled by your side. (Or in Shadow’s case often on top of my bladder but still somehow that works out) I was terrified I would crush him, but clearly couldn’t put him down so I slept in the most awkward position of all time- my hand holding him but stretched what I judged to be a safe distance from my huge self. I woke to find him on my heart as I always roll onto my back at some point and that was his place after that while he was small.

Somewhere along the line the more reluctant members of my family came to accept that I actually needed a dog with me had. Even my father who sometimes had tried to convince someone to convince me to leave my dog behind gave in by the time Shadow came around. He had a cat he loves and the perception of the cat being upset about the dog is a little warped by that love. Their first time together after that cat had drawn quite copious amounts of blood from my then 3 and a half month old puppy it took a feat of extreme will not to explode at all the expressions of sympathy for the cat. Anyway said cat can take care of himself and usually when I visit without the chaos of the rest of the clan, the cat is over it fairly fast. The cat hates me with a passion as I have never been found without a dog with me but we reached a state of detente.

This year in the eyes of some Shadow got promoted. Getting him certified as a service dog had been something my new psychiatrist had been keen on. I could see the practicality of it as we were having some problems finding housing but I had qualms about some of the requirements. Again Shadow has covered those in his own blog so I won’t repeat myself – or rather him.

That he is a support animal is without question. Despite 2012 being the year when my record absence from hospital was broken as I tell him what went on was beyond the ability of any dog to fix. I couldn’t cope in a completely predictable autistic way with the major change of having to leave my home of many years. The degree to which I couldn’t cope was a surprise and the fact I am still not over it also a surprise but given the number of very learned humans who also have not been much help in this time my inability to cope was not his fault.

He isn’t officially certified as anything yet beyond being certified as an emotional support dog on one airline. There has been some feet dragging on my part as a service dog is the more logical designation for my conditions and would grant him more privileges typically (although laws in our province are almost non-existent) but I have some ethical qualms with some of what would be required of him. Ultimately I suspect we will still go that route as I have been told that they do take the disability into account so the area that caused me the most concern was the requirement that a dog not greet someone without permission as it’s useful for me that he does and his friendliness is a fundamental part of him. One doesn’t tamper with the fundamental parts of a being in my ethical system so training him to seek permission from a human who would be slow to realize there was even someone who needed greeting and the attendant lack of social interaction that would go with that seemed unthinkably cruel to him.

Shadow isn’t just friendly. He is comically friendly. When he was a puppy and we were in Calgary for a funeral, a business man in full oil patch attire drove past us, backed up, parked his car and sat down in his very nice suit and simply played with him. He said almost nothing to me beyond enquiring about the breed so I have never been able to come up with a reason why that happened. Something more than the extreme cuteness of my dog surely but I can only wonder. Some days I suppose one just needs a dog urgently enough to break with societal norms in a city full of them. Who knows?  A commuting bicyclist did the same here although that’s slightly more typical for what the rest of Canada calls “la la land”, than Alberta.

When my friend had found Tiny for me she expressed a hope that having a dog  would make me talk to people. Tiny though was content with me as her universe so I was able to walk her at 1 am with no visible harm to her. I knew immediately that Shadow would need to be walked in daylight hours when there were people about and this was no small thing for me. I often find the daytime too bright, we lived in an area near a park so thankfully it was seldom also too noisy but if I am not doing well daytime is overwhelming. Add in the fact that suddenly neighbours I had had for ten years without them noticing me were it seemed, pouring out of their houses to say hi to Shadow it was all a bit hard. Hard but no doubt good for me.

I am pragmatic. I really struggled with those early months of his intense popularity in our area. I had read though that in a natural disaster people who know their neighbours have higher survival rates and better outcomes and as insane as that may seem as a way to rationalize what I went through to have Shadow’s social needs met at the end of every walk when I slumped at my computer to do comforting computer stuff that’s what I told myself as I started at my stockpile of earthquake water.

When I was in hospital my nephew would bring Shadow in. It was actually the nurses there who were among the most vocal that he should be certified as they had just had a dog stay for some time and felt it benefited everyone. I certainly missed him mightily as it was our only separation of longer than 2 days. I worried he would be a piner like Tiny and not eat but he was apparently loving the wild, student lifestyle with my nephew and having the attention of who knows how many university students who had left some beloved dog at home heaped on him but still I know I am number one in his brain.

In these days of intense grief, Shadow has upped his protectiveness to extreme levels. He had his bed beside my desk and would sometimes drag it even further to be warmer or less likely to have paper dropped on him. His bed wound up fully under my desk almost immediately after hearing the still unfathomable news.  I didn’t even see him move it just noticed that when I sat down the sensation of dog head landing on my foot was now part of the process.

He came with me, “home” to see my mother’s cold, cold body. Well he couldn’t go to the actual funeral home but was on her bed waiting for me when I returned. The airline we fly with had just changed their policy about service and support dogs so years of paying for him to fly were going to end. He’s more essential than anything else that travels with me and now they were apparently willing to accept the word of a person qualified to say I had a DSM diagnosis (heck I collect them so that’s no problem) . For their purposes he needed nothing else. The only hitch was they needed it 48 hours in advance. Which was of course impossible. They opted to waive his fare going out as a pet and have him come home as an emotional support dog. That would be the promotion some people refer to.

Only of course he hasn’t been promoted. Nothing at all has changed about my dear Shadow. There is no rank higher than my dog in our shared universe. That society might acknowledge his importance to my health and well-being is great but that’s society. It’s practical to jump through their hoops as on a small pension and the little extra I am able to earn legally because  it’s not easy to shell out for his fare and so on but he’s doing what he has done since he was 8 weeks old.

He’s very good at it. Back before the news while he still regarded me as needing more watching than I had in some time (it has as I say been a very bad 15 months) he was willing to have his eyes off me for a few minutes at a time. We have a very small space now and he must have realized I can’t actually escape without him noticing as his practices have changed a bit.

Right now he is back to the comical levels of surveillance he had when he was a puppy. We had a walk in shower at out last place. So reluctant was he to have me out of his sight back then that he would follow me into the shower despite it only taking a second at that size for him to be soaking wet. He would eventually settle for sticking his head around the curtain and then for lying down and complaining loudly about my being in such a dangerous device but that was slow progress.

We have a bathtub here. It’s a deep one and Shadow is not a fan as if I slide all the way down to soak my aching joints I am not visible at all from where he sits. Up come his paws and head on the ledge of the tub. I know it’s anthropomorphizing him to imagine he looks a little annoyed at having to check but I do imagine that. Today he seemed to feel the need to check so often I eventually felt guilty and climbed from the tub far sooner than my arthritis wanted me to. Still he is right to suspect in my pain and misery I need close watching. Nothing would actually happen in the tub but he can, I know, feel the pain and it’s that pain he is checking on. He must also feel the slight lifting of the pain as his paws and head come into view as annoyed as I imagine he looks it is also a bit comical and does give some relief.

I don’t really understand non-dog people because the love of a dog is like nothing else on earth. I can’t quite wrap my head around not knowing that or at least not taking it on faith enough to try it.

Back when I had Tiny who was so devoted to me people would marvel I would dismiss her devotion a bit as being a product of what I increasingly suspected was a more troubled background than I had been told. I knew she loved me but I thought that love was artificially enhanced in contrast to what she had known before. That I was good to her there is no doubt but still I tended to think I was just a huge improvement so her dedication to me made a sort of sense not due to my own qualities but in contrast to what she had known.

Shadow has changed my mind. When people remark on his attentiveness I tell them that I inspire devotion in dogs. Dogs by nature want to be devoted but mine seem to go that extra mile so people do remark. I have realized it isn’t every human or indeed the majority of humans who thinks of their relationship with their dog as a partnership to the extent I do. I’ve joked if I believed in reincarnation and aside from the practical limitation I would come back as my dog.

When I first got Tiny and would describe myself as Tiny’s human when booking an appointment people would sometimes laugh. The years went on and some municipalities started to adapt language for dog by-laws that was free of the term owner. I had nothing whatsoever to do with that but was simply using language the way I always do. That is I use the words that are true. Owner is not a true word for the type of relationship I have with the dogs I have loved.

While one can buy a dog and due to a dog’s forgiving nature even the most horrible human can possess it’s heart to a degree that makes me want to weep at times, I don’t believe you can own one. If you are lucky you can have one that recognizes that you are the human he or she was meant to have and tried as hard as Shadow did to prove it.

My heart is as fully his as his is mine. Since I am not being blessed with the ignorance of his mortality that he is perhaps more so, as having lost dogs it’s hard not to look at even a young one without looking ahead to that terrible day.

Still in the moment we have each other and much of the time that is all we are certain of. It seems unlikely that I will ever have the kind of relationships with humans I sometimes long for but don’t mistake this love of and by a dog as a poor substitute for that. It’s a deep and loving bond free from the complications and hurts that humans sometimes inflict on one another. I am not qualified to say it is a better relationship but I do know it is not inherently a poorer one.

Like the husband I will likely never have he is not perfect. He’s part Pekingese so he snores like a 400 pound truck-driver sometimes with that squashed in nose of his. There’s that aforementioned tendency to find the most comfortable part of my body to creep up onto in the night to be my bladder and I left out the part (although again he discusses it in his own blog) where he has a war with my reading material.

Right now I can’t really look after myself. I am losing alarming amounts of weight because of that and all sorts of regarded as essential things are not happening. Shadow however is looked after. On my worst days he has to advocate for himself a bit and I feel terrible guilt if his water dish is empty but so central is he to my universe that his care comes above my own and I do think that love has been defined that way by more than one poet or sage throughout time.

I titled this blog Just a Dog because it’s a phrase I hear so often, often preceded by “Don’t be silly,”. I feel sorry for people who can say, “just a dog”. There is no just about it. To not have been loved by a dog enough to know that just and dog don’t go together as it does them dishonour to so diminish their importance is a very sad thing. A sadder thing I think, (although the world again views this differently) than my condition. It probably breaks some fundamental neurotypical societal rule for me to feel sorry for those inclined to buy puzzle ribbons and turn facebook blue and all that meaningless politically correct “see how much I care about autism” nonsense and still say just and dog in the same sentence. So sorry any regular, well-meaning but insight impaired neurotypicals that read this. I mean no offense. This is just my truth about my dog and why he is neither promotable nor diminishable by any adjective.

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A Day of Grief, Rest and Worms

by

It rained today. It’s the first day of March on the Wet Coast of Canada so that’s almost a given. It was also a Friday which meant it was the first time I was able to be with my temple congregation as I mourned my mother. I had longed for today since getting home late Sunday, well really since learning the news.

That I am not doing well by any measure seems clears enough. I weighed myself today and found another 8 kilograms had vanished from my body, claimed by the forces that make texture in food intolerable at times like this and remembering to eat what I whip up that I think I can tolerate a long shot.

I tried to have a normal day other than not working. I went to my country band practice even though this week it seems habitual for me to wake after only a few hours sleep and so I found myself just starting to fall asleep again when it was time to get ready. It took me in this scattered state of pretty close to no executive function over an hour to locate my keys. I never did locate my music. When I got home I saw it was just where it should be even though I had a clear impression of looking right there many times earlier.

So I did my best to have the life I usually live or the recreational bits anyway which is what my friends have said to do. To ease back into the more arduous things as I am ready, but not to be a hermit. So I went to my rehearsal on Thursday and the one today. At one point I nearly burst into tears on Thursday over the fact that the recordings I had asked our sound technician to make of our last concert would never be heard by my mother.

I got myself to temple stopping at the library, despite not having a hope in heck of finding my library card. They know me there and usually you get two free borrows a year without one but since it was also Shabbat I didn’t have anything but my bus pass with me. I leave my wallet behind habitually and as stressed as I was words weren’t going to come to say as much but somehow the book I waited for 5 months got checked out to me all the same. The clerk said that for the record a bus pass does not work it should be something like a care card if I don’t have my library card. That got words out of me as I protested they are both issued by the government and the bus pass actually has more information on it that she is actually able to read. She demagnetized my book with more of a thud than seemed necessary and I escaped.

Our congregation meets at the Jewish Community Centre so every week there is a the usual hubbub of people getting ready on Jewish time. I have mused about how as a group, such unpunctual people even made it out of the dessert in 40 years but that has not sped up the pace any. So it was familiar. We donned our kippot and grabbed our prayer books and I headed to “my spot”. Then I realized there would be a bottleneck of people anxious to hug me so I left those behind and went to be comforted a bit. I wouldn’t have guessed 18 months ago that I would go out of my way to be hugged by people but the embraces that used to be something to endure were healing tonight.

The service was familiar of course but while familiar it is also different each time as different people read or give stress to different things and different meditations are chosen. I did not cry until the meditation before the Mourner’s Kaddish. Then I couldn’t stop for a bit. During the familiar rhythms of it I did stop until the last few words. But I was among friends. An arm planted firmly on me on both sides and so I suppose it served it’s centuries old function.

We gathered for the oneg after (-to delight ; so a bit more elaborate than a coffee hour). Our congregation usually spends twice as much time in this phase of things than the service which is not to say we skimp on the service bit but the social part takes a long, long, time. When I first started going it was so hard for me that they were so social. The eating and drinking together had always been something to flee quickly and now there was no fleeing without feeling like somehow you were failing to fully appreciate and take delight in Shabbat so I learned to enjoy that. Tonight especially when for most of the week I had been holed up in my place trying to sleep away my pain, or when I had ventured among humans been in more structured situations it was good to just sit and drink tea out of my blue cup, and eat what had been brought.

It’s important for me to eat when I am with people as I am so horrible at it the rest of the time so did. I brought my baby book which doesn’t go much past the age of 3 for me but since no one had ever seen my mom I brought it in case I had nothing to say or too much to say. Pictures it seemed would help.

My dog always gets a walk on Shabbat. I am Reform so no fear that I may inadvertently tame a wild beast keeps us from that. It is one of our rituals to walk with him and enjoy the peace and outdoors. In the summer before services often, as the days get so long that it feels Shabbat will never arrive but at this time of year afterwards. I think about and to marvel in whatever has come up or the portion for the week or whatever comes to mind, usually while simultaneously marvelling at the night sky when it is visible.

Usually I look up at the lights and think myriad thoughts and one would expect my thoughts to be on my mother tonight and they had been until then but as I said at the outset it was raining and had rained with only short respite for days. So my mission was clear. There were worms that needed saving.

When it rains for days on end hundreds of worms wash down onto the sidewalk. Some misguided worms crawl towards the street where if they are unlucky they will fall off the curb and be swept down the street in a torrent of water. Others will simply wind up in a puddle and meet a more visibly gruesome death as their body swells with more water than they can handle. Neither are ever acceptable outcomes to me.

People might be tempted to think I went at my worm rescue with more intensity than normal tonight because I couldn’t save my mother but that worms will be rescued is a given for me. There were rather more in need of rescue tonight and I had to give it up at the point where my dog became so wet I feared for his health but I relocated the worms who had only strayed near danger back onto nearby lawns. The ones who had nearly perished though I regarded as likely to do something stupid in worm terms if left too their own devices so into my pocket they went. They were in need of relocation to the worm sanctuary outside my door. Far from a street or gutter and where no one walks.

I’ve sometimes even wondered about the ethics or rescuing stupid worms. By actually placing the worms most likely to have come near death in the safest situation ultimately am I tampering with their gene pool? Am I breeding for stupidity? Should I, a mere mortal, even intervene? Yes, I can get more mileage out of the art of saving worms than some might imagine.

I used to anguish about this separation of the worms I viewed as not trustworthy enough to be left near the scene of their near demise (IE most likely to just resume crawling towards the sidewalk) . I had a nice backyard where I did a bit of gardening until this past year. When I did worm rescue and brought back some to there I would wonder if worms got lonely for their close kin or not. On a rational level I know enough about their nervous systems to dismiss this as silly but somehow just as some types of people might wonder if they are hurting a rock, despite being very logical and rational I always feel like I am weighing the likely sure death of the worm over it’s separation from the familiar. I of course am not one to underestimate how catastrophic separation from the familiar is.

Anyway into my pocket went the worms I had actually plucked from near death. Two so soggy I wasn’t entirely sure they would ever wriggle again (they did) one that had dangled right on the edge of the curb as we walked by and one I had plucked out of rivulet of water as it swept towards certain death. The worms are oblivious to all this I suppose. If I wanted to make this in anyway about my life and not just my habitual rescue of worms who will be stepped on, swept away or drown I might be tempted to think that I went at it this intensely because almost nothing this year has been in my control.

I couldn’t stop myself from losing my place that I lived, my health, more of my health, or my mom but dangnabbit that improbably long worm dangling from the curb was not going to get swept into the sewer system. I was tempted to think well it’s not an exercise of control over the fate of some barely sentiment being in a merciless universe because I always do exactly this but then I thought about it.

A lot of my life feels not unlike that of a worm in a long stormy stretch. The worm is battered by more rain than it can handle in a stormy stretch, swept from the familiar into the possibly dangerous and filled to a point of near death with water. The past 15 months it feels like the universe has rained down one horrible happening after another on me. There have been a few good but very few good. Like the worm that never gets to dry out enough to be out of danger, I never get a stable stretch enough to even begin to brace for the next deluge.

So then I have to wonder is this worm rescue I diligently perform even in more stable times still my attempt to control some beings fate all the same. It may be just an extension of other familiar repetitive rites made to comfort and create the sense of structure just in a more eleborate guise. Who knows? I don’t. Or maybe I do and it doesn’t matter.

I’m drained and sad, and have a hole in my life that won’t even begin to mend any time soon so if all I know at the end of the day is that I was finally able to mourn with my closest friends, and that approximately 80 worms were saved from possible squishing and drowning and about half a dozen from certain death isn’t that at the end of the day about all I could hope for from a day like today?

The day we flew home when my dog was so distraught by any separation from me I kept telling him tomorrow would be better but in fact the tomorrows of this week have not been. Not yet. We head into this tomorrow, a day that is always a day of rest so not as atypical from all the other days of rest we have had this week only able to claim some small victory over the elements that sought to destroy some worms. A very small victory except we are at least heading into another day. That hasn’t always been a given in all of the chaos and pain of the past 15 months so while some people no doubt would rate both the religious aspects of my life and the worm rescuing ones about equally pointless to me they have a point.

I don’t normally even try to defend the religious parts as they don’t need defending. The worm rescue parts well it’s something that some people knew about but most didn’t but it is how I spent the last part of a very long day, in a very long week, in a very long year and so on.

Anyone hoping for something more moving, or illuminating as far as either autism or grief goes is probably feeling a bit robbed and it’s not like the worms will be singing my praises as they dry out, and burrow into new soil but that was my today. It could have been much worse – although not much wetter.

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