Tag Archives: Bereavement

Dear Dad

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My father passed away almost three years ago.  Unlike my mother what to say was difficult.  What to meditate on in advance.

As I sat contemplating this as I felt I had failed him somehow as throwing him in as part of an other issue would not do it. I thought as I ate near where I would go to observe his second yartzeit ( the anniversary of his death ) a lot about the contradictions in him.. He never said he loved me. Not once.  He in theory did not believe in love and I had thought for a long time that to respect his belief system I should not love him but he was my father. Love was inevitable  when I set that aside.

I wrote this before that service as my status on Facebook:

Dear Dad,

Two years and I miss you still. You were not an easy father but it was you who told me the most about what it was to be me. You taught me things when some might have wondered why. Those dark starlit nights when for a man who said there was no such thing as beauty you sat transfixed by the night sky.

You said love, beauty and G-d were for others. Those not intelligent enough to endure this world without them. I tried to respect your belief system although I was your genetic challenge who in my teens you threw a book across the room and asked if I could not see I had surpassed you.

You never seemed to realize the grim realities which could have come to pass if you were not stubborn on my behalf early on. Or maybe you did and that was part of your anger. I will never know.

In the end you were proud I had reclaimed a heritage I always suspected scared you. Your drive to convince me on all three points seems now an extreme version of protecting me. Beauty can be transient, love may fade or fail to take root, and well G-d, the hardest one to convince me was for others, can seem absent when it is hard to understand why. Free will as a gift given the nature of humans can seem small comfort.

You joked a lot when we visited the last winter of Mom’s life. Calling me rabbi so often I said keep it up and I would become one before I had a doctorate. Your confidence unshaken by my small life you asked,”Why not both? ”

You held me briefly as I came in from my nightly visit with James and said “Out of everyone only you had the courage to be a Jew.” You said it fiercely but Far you never managed to convince me for long on any part of your beliefs. So I knew this was pride and love however hard you made your voice.

So I do love you. I look at pictures and wonder how you convinced yourself it was not real. Broken so completely when Mom died that to live without having loved may be easier. I don’t know.

One of the last conversations we had you seemed about to cry over religions so beautiful you had seen in Malaysia that may have died. I said it could be they were worshiping outdoors and belong to one of the many religions going strong. Again with confidence I do not have you said you had books from then not all of which you were sure of the language of but I could work it out.

Being your daughter was often hard in ways it did not need to be. All the same you were the best father for me. I love you and tonight I will praise the G-d you could not bring yourself to believe in , in your memory. For two years that you fit no meditation I could find drove me to epic levels of writer’s block.

I suppose this is it then. I love you and I will miss you always because this planet is indeed a lonely place without you.

 

Why now and not when it has been three years?

I was at the beach yesterday and I thought of my father. Not that he was a beach goer but the year he got a metal detector for his birthday my mother needed to stay out of the sun for another week.   She gave him instructions on how much I needed to swim but she thought I would be fine with going to the other lake nearby  for the sake of our joint treasure hunting.

We found very little but we faithfully recorded those finds. ( See photo of a huge treasure day above)

It had been a long time since I had done an activity with my father. As a young child we used to go to a river to picnic and fish. The whole I never caught one makes me wonder if they even had fish .

My father would die without ever saying he loved me.  I do know he did even if the words never hit his lips.

However hard he made some part of life there is so little point to hanging onto that part of things.  Those hardships we did not have too have and well a long list of other things.

Those distant treasure hunts now seem a treasure in themselves.  As one who struggled with the concept of love  but did work it out the many reasons why my father may have never gotten fully there are clear enough.

Yet in so many pictures he seems happy with me.  The years that would follow that summer were more sickness focused although my mother and I would swim her final summer as always I felt sure it was indeed the final time.

I face several medical challenges and despite my parents not usually having much to do with those  they come to mind.

I do not grieve some idealized version of the parents I never had. It is the flawed but sometimes surprising parents of my reality I miss.  There was a time I thought that would never be the case but even if it took two years to know what to say in lieu of a mediation before prayer and longer still to complete the task as far as it really did seem wrong to just carry on blogging without at least trying to be fair. It is not the intense writing of  a fresh loss but my father is a hard man to nail down with words.

When I was young enough others might have doubts he said one starlit night that I would be lonely due to being so smart.   He died believing I had the capability to do more.  Maybe and maybe not.  But this unshaken faith that the finish line to some lofty goal could be reached  is a gift I think .   I have heard parents say much the opposite. Parents who perhaps seem more typical in so many ways so I know this acknowledgement of a pride in doing what he could not as far as live as a Jew, was real as was his belief I could still get a doctorate and become a rabbi.

When I was in cadets for some reason the thought that he was one became stuck in the Regimental Chaplain’s brain and several others would also call him that.

My father had had to leave school very early on due to the Second World War and he always wanted more learning.  This part of a heritage that he had feared was one he did stress as he saw that as a positive part of it. The rest of course given the course of his childhood were difficult for him.  Then thinking it safe here, the year I was 12, he had a horrible incident on the US border at a remote crossing.

Paged after a parade I was in with cadets to see the parade marshal . I did and it said to go to my aunt and uncle’s house. It was close and I went there.  My father was shaking.  My aunt suggested I go and find my cousin but he wanted me there to see and to hear what had happened.

Many years later when I would be a victim of a hate crime which initially seemed random but I was the only one to think that in a country which for no logical reason seems like the scariest place for it to happen he would apologize for the facial features that were his.

He  had said as one can add to the rules of survival when he was traumatized that I should only cross the border with very Canadian people. Thus I have crossed all of once by land.  That is how such rules work.  There were a lot of them he had taught me before but ultimately the inherent logic is you are alive due to them .

People are products of not just genes but experience and there were experiences if I could I would have wished changed for my father but they may have been what made him such a staunch advocate and ultimately a proud father that I had finally gotten the task done.

I will never know what I love you would have sounded like from his mouth but I do know what pride, confidence , worry , and so on sounded like. As I said it is a topic I struggled with and perhaps lacking a reason to work out if what he was feeling might bee love he never did quite get there in words. In deeds though and in other words he did indeed.

A Long Silence, A Dead Father and Train Wrecks of Words

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traiinimageuk

 

I have been unable to write here. For much the same reasons as speech breaks down. I feel it more intensely when even writing fails but it does.

My father died in August and I have tried so many times to write about that. Or about him. I have pondered writing about other things and it seemed wrong to line jump any other thing without having written about him.

I had decided to today though. Knowing in life this weird thing happens where I can seem quite interesting and animated when in fact I am stressed and afraid beyond all reason because that is how things work.

Verbal language at a normal pace and level is not going to happen. It seems almost a distant dream as this far longer than usual extended bit of stressor after stressor leaves me wondering if it was.

In real life the times I rattle on like a freight train about topics of interest cause issues. Not the one people talk  about in those courses about letting others have their turn. I would not be able to when it is like that anyway.

What happens is people tend to mistake this for an improvement. On Thursday my ride to and from band couldn’t understand what happened in the interval and I was only slightly more worn down by band and thus focused on the ways band does that to me and actually in tears which would be good as it was closer to real but the contrast was not something a person outside me can parse.

Going out as the last thing I had seen was on Gamergate, thus igniting my fuel on why are so many people who say they don’t game weighing in here on what happens in games. Games could fairly be said to be right up there with kids as areas or real expertise and practice. Yet I had not been able to get my opinion be more than discounted.

I found this odd but had lots of practice over the summer in areas I could offer actual links to irrefutable knowledge just turned down. There are cool opinions and for games it is apparently one that lines up with other real world agendas. My experiences and opinions do not line up with what people want to hear so being dismissed is a given.

Still I have all this pent up energy on it as getting heard on Facebook in the legions of non-gamers is impossible. For actual gamers it is almost a non-issue. Beyond the added use detracting from the other one and non-gamers getting all worked up about games never seems to end well.

My autism of course is always altering my presentation to the world. The world forgets that quite often and so will not view my run away train mode of discussion as a bad thing but a good one. I am animated, talking about something new to them and so on. That it is holding all the other more personal stressors at bay even if I have discussed this mode people will forget.

I thought though I could use it maybe. I am passionate about games. How even just playing them specifically helped me with a lot of things and how they have afforded my opportunities I would not have had any other way well games are huge so there was this risk that I do feel that strongly enough I couldn’t stay in the lines of course.

Writing within the lines not being something I have been good at since high-school well it still seemed like a tool I could use to unjam the blog.

At the same time I have been reeling following the difficult way the “system” admitted it had failed me so badly that it suspects it can only fail me worse has of accessing “help”. They had suggested one way to access help and it wasn’t working well.

I cannot phone for it. So this tiny window in the crisis chat where as a band-aid to the whole we conclude you will die if we help you or if we don’t. The cab will take you home now incident of the previous week and oh yeah the cab will take you home. My life would make for horrible television. Still the plan was to use chat to access the crisis team. That was all the plan they had.

A bad one as my remembering that in the designated time is hard and the people in both areas vary . The chat itself became a trigger after waiting for 38 minutes because I was most certainly in crisis and being told it was closed.

Although you can phone the phone bit and get told to call back like a bad joke. I try sometimes even though I know my odds of being able to speak are so close to zero but it is in my nature to try.

Earlier they seemed to understand that. So for a few days they checked in with me and then boom that wasn’t happening. They also seemed to understand that even though making a call to a stranger is close to impossible I don’t get to any good resolution on the phone ever. Or maybe they don’t and those who expressed that they did were flukes. But I don’t. In the end you hang up and nothing has changed.

The time the came out I felt that lethal stirring of hope that suggested if I could hang in some plan would come into being but I wish I could kill off the reflex to hope because it is indeed nearly always an accident that will not be repeated if something works.

Sometimes even on purpose they follow that reason which was why the “Sucktastic Support team” failed so badly. Some perverse reasoning running contrary to my entire lived reality that supporting stress reduction increases ability to do things had them do things the opposite of what I said or my doctor said to levels that were flat out cruel. They owned some of them as conscious decisions.

Failing with them as the system usually puts it although even that had a re-write briefly leaves nothing here so I have lived in a horrible void having to go through things that any human would have a horrible time with on top of every other issue.

I have been starving to death slowly. 18 months ago I had the luxury of finding it funny still that they could wind up bogged down in eating disorder versus disordered eating. Again it is an issue we have had a number of times and the formula for improvement is pretty rote if the system is functioning at all so the objective reality staring them in the face registers.

Right now it doesn’t.

I have to live knowing it may never do so. It would seem an odd and slow and hard way to die but other autistic adults have died pretty much the same way.

It does seem like such a rock bottom competency. One which organisms have such a drive for that if I were the only one to have issues that increase around texture with stress and with remembering to eat on the planet while I would still think the objective reality of extreme weight loss is actionable without having to understand it well…

Losses piled on loss. You get to a horrible point where most of the time if you leave the house you react in ways that are not logical.

That doesn’t seem too terrible except you watch your stress reactions blow other carefully cultivated parts of your life apart. I limped away from band last month, Would say ran but I cannot run. I fell countless times on the way home. I collapsed in tears torn in that weird spot between wanting to be invisible in the too long too dangerous trip home and wanting one of those falls to be seen as an accident and action taken but I made it back to invisible central.

People get really focused on behaviours with autism. What they signify is too often not what they care about. Control and management. The epic distress I would need to be in for this to happen well as an adult it’s all hit an miss anyway. There was still a solution and it was one I was ashamed of because it came down to things going the way I had expected them to. I was ashamed because although I reacted in the moment, out of pure inability to handle the unexpected coupled with passion for the cause well it did amount to them bending to my will.

Years ago I had a similar feeling when after an implosion of too long duration a period of a number of years of extremely autistic friendly behaviour around the holiday season emerged. The implosion not timed at all as they never are and I still at that point in my life thought imploding was so much better as it was discrete. Nearly always I could make it even more so. I could blend in. Keep my distress covert.

These kind of things have picked up pace so I have this weird distress of not expecting to survive but knowing if I do the damage my pretty erratic behaviour has done cannot be undone. It’s true. You can be boring and reliable for 25 years in a group and a string of things like this will stand out.

So the pressure of not having any life left to live in if I get well is this weird other factor. People who are not autistic who write about “melt-downs” don’t seem to consider that within them we may be observing ourselves wishing it were other as well. This competency that I quite frankly wish wasn’t therem to see me and know how it will impact things is in itself a source of stress. You react in the second and the very slight time delay before the weird narration of an event you cannot stop kicks in.

I am very articulate in many languages so while usually a source of embarrassment the literal switch being set in default is seldom more than that. I can unstick it. Like everything else stress impacts it so the horror of taking an invitation to leave the hospital on day 2 following my hysterectomy literally well… It’s gruesome thing if you have a large bore iv. I realized a microsecond too late that this would not end well. Went to ground and found myself contemplating the odd act of calling 911 from inside a hospital as security came rushing in as bleeding is now a violent act of a sort.

Thankfully the shift supervisor had some sense or the whole thing could have got uglier. It ended in a position just as miserable for me really as the level of threat that I actually feel under that prevents anything as desirable as getting into a bed but instead leaves me crying under a shower stool is not pretty. Discussion of what to do about you, much of it violent does not help. In the end a woman came and mopped me up and spoke to me as if I was indeed a frightened child which whole some of my advocate friends would cry horror at that being patronizing it was actually a miracle of sorts that she could see the fear. I am 6 feet tall (186 cm) and have the shoulders of a linebacker. While I may in fact seem my scariest when terrified myself only a few people have the gift of seeing that, Maybe all of two when things have been at that extreme in my entire life in fact.

It did of course get worse again. It could be predicted that having been stressed to that extreme that the act of even staying in a place that had seen such horrors would be too hard. Which you know even as you flee will stress your friends but you cannot reverse time travel and undo any of it.

It is actually the awareness of how it is likely to go in those moments you cannot stop that make them a kind of misery that sometimes keeps you in motion. No action is quite extreme enough to flee the mounting terror. That time it was only getting too woozy that returned me to my home.

Tonight after more than a week of trying to get to any sort of resolution with the impossible as I don’t feel dead yet we hit the word barrier so hard.

They always say it is good you are reaching out when you try to access help. If you are autistic though there are so many points after that that can break down. Oh I hear myself. Or see it. I know if I take issue with things that seem like nit-picking but register as massive right then it is annoying.

This watching yourself annoy or confuse the very world you need to help you adds another level of distress to it all.

I managed to use the crisis chat in the appropriate time. Watch myself autistically hating even the way they say sounds when obviously they cannot hear me but more academically having issues with other bits of the construction and I know it would be best not to object to any of that as my fingers fly in disobedience to this knowledge.

But that’s how we are supposed to connect. Without much thought to my ability to speak even if I answer the phone varies with stress. They have written about it. I suspect the person trying to talk to me today could see what was written but it all depended on being able to speak.

Which I technically can do. I don’t know why there is such black and white thinking on the parts of the people meant to help us about speech. It is not unusual. Even the typical have these issues so it hardly seems a reach at all that in distress a system so dependent on speech and in fact increasingly dependent on it will fail.

So it ends. You had hoped to blog on something a step less removed from your personal Hades. Then you were plunged so hard into it for the same reason blogging sideways about another topic hoping to get into the others one day wouldn’t work.

This as probably not very useful at all to anyone but me, is a worry but I do know I am not unique in seeming to possess a mouth that words could get through. In it all being so uneven what comes out it should not be viewed as reliable even when it seems to be working well. Still a blog should have some greater utility so if you have expressed yourself badly it is hard to make a case for having one.

When words stream out my mouth they should be viewed not with suspicion as not being true because sincerity and honesty holds up but wondering what is backed up behind them. If I were shouting strings of lines from a Disney movie that the words were standing in for something else would ft the narrow conceptions of autism at play here. I saw someone batting down people’s expression of concern on a blog where they supported Voldemort Speaks (for the uninitiated here stick in Autism as that group is to me a greater evil than any character in the Harry Potter universe) . They kept saying their kids was less high functioning or extremely severe for reasons like this.

It is not comprehended well, that there are many people like me. We do not fit a formula but may not be able to express the things that most urgently need expressing. Having ever expressed much of anything the expectation is we can even if a lot has been documented on the exceptions they tend to be when speech is showing signs of failing. It is absent it is slowing. Not you are going on in a way that has had more than one person think you could be a late night talk show host. It is still a communication issue and while there are people who cling to notions of nice clean divisions oh what I would not give really for mine to be like that.

Easy to recognize, hard to ignore I imagine it would be easier if the streams of words that could pour out were not mistaken as interesting or informed or whatever. If the ability to produce them about things that barely matter or matter on an academic level were not confused with the ability to talk about the big things. The things that you fear will kill you.

When the utility of having a label gets batted around the benefit is meant to be appropriate supports. Awareness (shudder) Unfortunately when you get older and have lived the bulk of your life getting by as best you can people seem to forget that all the time. Your label is this thing about you. A quick snapshot one they sometimes want refuted even no matter how long it has been your reality but not something they actually have to factor into anything.

I feel like a make work project where huge amounts of time has gone into describing my issues but no one has to read about them. A make work project that could die of the weird warped way autism is viewed because those of us who live the autistic reality are somehow seldom seen as credible about it.

Some even would have our awareness of the issues we have count against us which is such an higher level way of discounting people there should almost be a medal struck for those who think a lack of self-awareness has to be there. Nope. We can be horrifically aware of things we would choose to do otherwise sadly. Unable to change them. Seeing them, hearing them only serves to do this battle with our brains. You see yourself as logical but in those worst moments you are everything but that. Oh sure there is a specific logic to what will set you down those paths.

I have wondered if an operating manual of me would be possible because there are enough predictable points of where the intersection of myself with the world will fail it should be possible. Still people do not read even short instructions for things that interest them so who would make it to page 47 where it might say that saying nice to meet you in the first five minutes will get a person flushed into an exile they will have to return from. It’s hard to come back from that. I often say nice to meet you years later but I suppose it helps to not be expected to fit social norms but I like to be sure.

Still returning from this flight of fantasy to the more harmless ways communication sucks we have now.

The planet feels like it is has rejected me in every possible way now. The paperwork that excuses this has long since been completed. Would it be so hard when we have so many ways to communicate for people to try to listen for what isn’t being said?

It’s so exhausting.

BrooksPPhappyfishmedadreads

A Day of Laundry, Chaos and Rest.

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It’s been a terrible week. Care that was supposed to happen and was somewhat vital for me didn’t. My father wound up in hospital briefly as well and there’s still all the grief and all the issues I had before my mother died. Felt very much like I was dangling from a precipice with something about as thin as a spider web to cling to but without the tensile strength.

I didn’t cope well. Mostly I coped by staying in bed and asleep as much as I could which isn’t ideal but was the only way I knew things wouldn’t get worse. I did decide I couldn’t bail on my band as the Country band I got roped into playing the drums for (The Haywires) had the concert on Thursday night and it’s a small group. Oddly popular it seems to me given how easy country music is to play. I take my responsibilities seriously so as much as I would have loved to just continue to stay unconscious as much as I could I wouldn’t stand up our group or the audience which admittedly not big was about three times the usual crowd so I went.

All my autism related problems get exacerbated by stress of course so my ability to shift my attention, get ready for band and get there was so much more complicated than in 2011. I actually started preparing four hours before I needed to be there and I still only made it by 4 minutes. Along the way I got one of those calls I don’t believe are so random. Without the call I probably would have hid out all of today in an unhealthy way, probably dragged myself to temple to not cause worry and then gone back into full on hibernation mode.

It wasn’t anything stupendous. It doesn’t take much to make a difference. The person had read my mother had died on Facebook and thought since she would be in my area she would offer to come by and give me a hand with my place, reasoning between my worsening physical issues and my grief I could use help. (I think she was probably among the many volunteers who packed up my last place so honestly she probably thought I could use help anyway)

I’ve grown in my relationships with people. It used to be hard for me to accept help. I felt embarrassed or ashamed. I had done a lot of that growing prior to my huge, life blowing apart reaction to my move early last year or the levels of help I had then would have been unthinkable I suppose. I didn’t have any choice in the matter really as sick as I was if people hadn’t been willing and wanting to step in and manage everything I could have done little about what needed to be done.

It’s 15 months later though and life hasn’t really improved. It many tangible ways it is worse. Every time my doctor got enough supports in place that we made forward progress someone would undo them with a stroke of a pen and so I don’t even take surviving for granted. When you can forget to eat for long enough that more and more kilograms vanish and forget just about everything else even if the long term effect of living like this wasn’t wearing me out that in itself would be dangerous.

There’s no appropriate support to be had. I fall through a gaping hole in the system that doesn’t know what to do with people who have both an autistic spectrum disorder and a mental health issue. My autism they say makes my depression untreatable but our entire system has been reworked to a medical model. The very premise of everything they do now is that some magical pill will make the patient better if only you can get them to take it. Eventually they will, as they have before say the autism is primary and I am thus not even their problem.

So we struggle and struggle, and get exhausted and mad and sometimes just want to give up entirely. As long as I can still get mad I think I will be okay actually but I know that eventually that anger turns into resignation.

So this woman who is close in my age but has young kids, wanted to come by and help but my place isn’t suitable for a toddler. There was a time I would have just said as much and not had the temerity to suggest something alternatively helpful. I don’t have access to a washer and dryer here and my landlords suggestion I suck up to the people in the two other suites where he managed to put ones in hasn’t exactly seemed reasonable. So I said how about if I went there and did my laundry instead and it was agreed.

That meant an early day for me. My schedule has become more erratic due to the international nature of the little work I do and I don’t unwind from band easily and tend to be up until 4 or 5 am on band nights so I was a bit hesitant. Yet I knew two things – that I did in fact badly need clean sheets and so on as I had last managed to have access to laundry facilities in this town at Chanukah, and that the guarantee of eating at least one meal and having some human companionship was not something I could afford to miss.

I miss being with kids. When I did respite care my charges grew up and while I continued to do the adult care for the only client I kept when my arthritis got worse kids are another thing all together. So there was a certain appeal to just spending time with a three year old. I had looked after him and his brother during the High Holy Days but had not seen the little guy since so my better instincts weighed things out in favour of going, of making the healthy choice for probably the first time this week.

It was a chaotic day. The three year old had grown up considerably since fall and was very verbal and very keen to tell me how things should be. He was also very eager to be helpful with my laundry. So that was enjoyable as they had a front end loading machine I actually would have gotten a lot sorer without my miniature helper there. A noisy day as well of course. As said three year old could and did have a few champion tantrums when tired, hungry, or surprised but that’s part of the package.

Improbably we managed to get through all the laundry as other changes kept developing to the plan so I wound up staying until it was time to go to shul. We had a brief period where we were left with just my three year old over-lord and he had a brief and complete tantrum at finding he had been left even though he had been fine with it when his mother said as much. I pulled out my tablet and he was quickly lured into playing with the piano program on there and then a board game. So I played with him and monitored my laundry and it was briefly almost quiet until the older child and a classmate arrived.

I was then in demand as an improbably old playmate but all the kids were keen to involve me in some sort of play about a monster. So the older one demanded I be various things the younger one protested no I should be a person until vampire was suggested. (I had tried zombie and werewolf to loud protests from the toddler) I immediately objected that I couldn’t be a vampire without a cape as the other vampires would make fun of me. (Vampires have standards I gather) That set all three children to assuring me no problem and going to get a cape. I remarked to the mother, that I had meant that as more of an obstacle than it was but sure enough a child sized reversible, batman/superman cape was produced and the 6 year old on seeing I got it on the wrong way around the first time gave me a lesson in how to get it right. I think I must be good for the self-esteem of children because I actually do have problems with things like that although for this particular cape I just hadn’t paid much attention to the fact that of course the batman side must be the vampire one. Silly adults.

It was fun enough to forget everything else. I don’t have a lot of energy. When you don’t remember to eat, or take your thyroid medication or much else and spend too much time sleeping at times and not enough at others well you get run down. Still I managed to hunt the kids as a vampire for a reasonable amount of time until allowing myself to be slain by the youngest so I could go back to the laundry.

The kids suspected a trick. I kept saying, “I am just a normal human doing my laundry,” as they lurked so I had to throw my arms up to a vampire pose and bare my teeth from time to time to get them scrambling. I don’t single task well right now so this child generated multitasking was enjoyable. I felt almost competent.

You shouldn’t feel refreshed after a day of endless loads of laundry and keeping up with high energy kids but I did. Even before we got to the Shabbat part of the day. Earlier in the day when the house had contained a more manageable single child who had been recently fed and was thus content we had talked a bit about the challenges of Shabbat for her. She was torn between her desire to have everything Shabbat ready and the fact that the kids pretty well undid everything as fast as things could be cleaned. She asked if things looked better than when I arrived at one point and the truth was really they looked different but that didn’t matter. I couldn’t remember when the actual candle-lighting time was even though I stick it on facebook for those who like to do things by the book. Shabbat is much like any other thing you think you feel like you don’t have the time to get ready for in that it still happens and sure enough the candles did get lit. Food was on the table and we ate.

When the eldest found out his mother was basically sneaking out to shul when she was honest that she wasn’t just dropping me off he wanted to come. He loves services but hadn’t slept well and we don’t finish until close to 9:30 so it’s not exactly kid friendly. I joked that she should keep this up and then he would rebel when he was old enough by always going to shul.

Services were much like always and not like always. I didn’t get to sit in my chair. I suspect there may have been some concern when I didn’t get there before things started as the importance of being in my chair means being early is practical. There had been some discussion between my friend and I about the temptation to just hang out with my dog and not go but I knew that actual worry would occur if I skipped entirely. We arrived half an hour after it started but we were not the last to arrive which is typical for our congregation but not so much for me. I must have been oddly healed just by the rambunctious company of the children as not being in my chair was not as distressing as it can be sometimes. There have been times when I go to great lengths to be in my chair.

There were several not so regulars at services tonight which I also sometimes consider distressing but I coped with that as well. People talk about inclusion a lot but they don’t tend to think about how the things you can’t control impact some people in your congregation. Everyone is trained not to mess with my blue cup by now but of course we can’t ensure that everyone is always there who my brain has decided is always there and that no one new come and so on. I know it’s not even healthy or rational to want to control that but my reaction to those human changes fluctuates. They are things I cope or don’t cope with and oddly enough after what should have been a day one would expect to leave me frazzled and frayed and clinging desperately to both my chair and my blue cup I was fine.

This was my second time being able to say the Mourner’s Kaddish among my friends so it should be easier and in some ways it was. When we got to the mediation we say before and I got teary. Hands reached out from both sides just as a matter of course. A year ago this sort of contact would have been difficult for me but now it was comforting.

It was hard when it was all done to accept the condolences of people who had been travelling the previous weeks. I somehow keep expecting this whole mourning thing to be tidier than it is. People keep telling me it won’t be, especially for a mother but I can’t stop wishing it was quite so tidily contained as the structure of the year of mourning suggests.

I’m very tired now of course but mentally feel better than I have all week. That’s somewhat normal for Shabbat but I suspect the invigorating effect of child’s play helped a lot as well.

Part of tonight’s service the service leader talked about what Reform Jews believe. It came up in contrast to the very precise rules and directions in the Torah portions this week. Rational is always part of the definition when reform Jews define themselves I’ve noticed, and I always considered myself rational and still do. I know a lot of atheists who by the very act of my engaging in any organized religion have now written me off as irrational but there are not many people as rational and logical as I am day to day.

You may protest well there is that notion you own chairs that are essentially public etc… but my preference for things to be the same is something I have to put up with while getting a similar scolding from my brain. Still until 15 months ago I only had believed in one miracle. One single time where something happened that I could prove fell outside the laws of physics. Perhaps the easiest kind of miracle to believe in I guess where you can do the math and say nope a falling body of your mass shouldn’t be able to wind up in a concave indentation in the mountain on top of the glacier I fell off of. I had like a moron reached for a can once we were safely at the top and unhooked from each other. I had no time to react in my fall and considerable time to lie there stunned and listen to my team speculate on which blobs and bits might be my body before I could rouse myself to yell I was in fact alive.

The miracles that are hard to even recognize though are the ones like today. How is a day filled with children and laundry and a rush to services in anyway miraculous? We could miss the miracle in there if we didn’t recognize that the deeds that sustain us against all odds may be dressed up as the totally mundane.

I have thought a lot about the fact that having spent the better part of a decade, after realizing I just could no longer try to worship Adonai in an Anglican setting, and getting up the courage to actually go to a service and join a congregation, I did so at a time when I was actually doing very well for me. Without that sudden burst of courage that got me across the threshold of the Jewish Community Centre I would have not had my rather big gang of people to see me through the worst of my health crisis. I would not have the fairly steady supply of support and encouragement both practical and emotional. I’m alive due to a burst of courage that experience has told me really couldn’t have come solely from within.

I had previously often referred to myself as a hermit but our congregation doesn’t believe in hermits I guess. While I was still in my pre-crisis mode brought on by my move I had more social invitations than in probably the entire prior 20 years and had started to do more than just survive them ,which is always the baseline expectation I had to go into them with, but to enjoy them. Call it a sudden, improbable social growth spurt if you must but it was a miracle.

Part of our belief is that we are partners with G-d in the repair of the world and as strange as it would be to describe a day spent doing many loads of laundry and being bossed around by children as miraculous I am in better state of repair now than I went into the day in. I don’t know about the world but as I am part of the world thus far my repair has to count for something I suppose.

Through this long ordeal there have always been these perfectly normal seeming things that are not so normal for me. Long ago most of the friends I had close to my age died or moved away. So even spending the day in the company of someone close to my age was not typical for me. I couldn’t imagine making friends and wasn’t even convinced new ones were not more trouble than they were worth. When you have serious social anxiety and social skills issues you can of course rationalize and probably have to to some degree, why you don’t try harder.

This was just a woman trying to be kind and useful in light of the fact my mom had died and I was struggling. But there is no just for me in that sentence. The ordinary parts of life have been the most elusive for me. I choose to see the hand of G-d in that I somehow do feel better. People inclined to be be blind to the everyday miracles might just say well this person was just filling a community norm. It’s right there in black and white to comfort the mourner.

I always prided myself in not being all what I phrased “hippy-dippy west-coast” like inclined to see the holy in everything and in the past 15 months I have realized how very wrong I was. I remember being really frustrated less than a year ago at the ingratitude of the people during the Exodus. I protested that they had lived in the time when miracles were the most obvious and they were getting direction straight from G-d and yet they complained about the food and so on. It drove me a little crazy really as I really wanted that very explicit direction and while some of that was coming more from my depression and my autism another big part was still that I was failing to see the less obvious miracles and thus be appropriately grateful for them.

Bread isn’t going to rain from heaven but the oneg might keep getting suspiciously large so that there are enough left overs to keep you going for a few days when living on just a disability pension while having to replace your clothes and so on is making life a little more stressful.

G-d isn’t going to put up a sign that says go here now and do exactly this it seems yet I can’t deny that as the only place my courage could have come from as far as even meeting the people who would become more than my congregation but also many friends. I had sat and prayed and studied and known where to go for ages and had never, not once, been able to actually get myself there. I’d even wept over my failure to do so. It had to happen that I managed when I did or I would not have survived I am certain but at the time while being shocked and amazed by finally getting there I didn’t really properly attribute it. I didn’t know what was coming but I do choose to think G-d did.

There are all sorts of theological debates that rage about whether as a group, we even believe in an interventionist G-d at this point. I do. I don’t believe in one who cares who wins the hockey game, or one who necessarily mucks around constantly in human affairs. One could get mad I suppose if one thought G-d was like that as I could choose to think well instead of providing this sudden burst of social courage, that ultimately provided me with the community I needed to get through my crisis wouldn’t it have been simpler just to skip the crisis?

I’m tired and worn out and far from well and the outcome of said crisis since new ones keep coming up is far from certain. I should probably have a strong preference for a G-d who just lightened up a bit on the amount of horrible things that happened. I haven’t decided how much G-d even does choose to  control these days or what governs the why and the when. I suppose I will never know so the best I can do is come up with a position that seems most likely one day. A position probably that will keep changing. I do know on our end we have to actually be open to letting G-d do what he can and being grateful for what he has done, which we cannot do if we fail to recognize His hand in the totally mundane yet life sustaining aspects of our life.

All my life I have tried to do what I thought G-d wanted of me but I think I often failed to let G-d help me because those angels in human form have been so hard for me to cope with. I’ve been insufficiently grateful during all those years when I saw myself as too rational and above seeing the miracles in the entirely mundane. We don’t know how things will end. I guess we never do but however things end here there will have been growth. Painful, scary, perilous growth which still has to be better than stagnation. Even for a person with a very strong preference for things staying the same.

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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Summers in the Sun

by

Mombrorsajeg 1172x856Finding a trike for a Viking sized toddler is not easy.

My mom died a week ago. Such a short sentence for such a complex reality. There were so many times growing up I felt like a motherless child and so wanted to like the song that sings about that but now I really am one.

It wasn’t an easy time we had growing up for many reasons. My mother was a turbulent and troubled woman, shaped by an extremely early marriage to a very domineering and difficult man. She did her best at times. Or I suppose all of the time she did the best she was capable of at the time but sometimes that best was so painfully short of the mark it’s painful even now.

There is a subset of the human population that is blessed with a gift for denial so deep that having made up their mind something didn’t happen they can come to believe their version of the truth and live it. I saw my mother do this with many things over the years but the one people have wondered the most about has been my autism.

The way my doctor explained it to me when I was 18 and had been hospitalized for the first time making him seek access to my medical charts as far back as he could get it was normal for parents to be advised to forget about it once certain goals had been met (basically they knew you were not mentally retarded and your speech was okay) . You were labelled with residual autism but it was never to be spoken again or risk your backsliding into preferring to spin mad circles in your big wheels for hours on end, or stacking your pennies over playing with people or something more appropriately toy like.

No one may have ever followed that advice better than my mother. Every so often I caught a hint my parents still had some of the same concerns but the “A word” was not spoken. When we moved to BC at 12 and I not only wasn’t able to make friends but was relentlessly bullied there were many hushed conversations.

The next summer the girl who had been my best friend in the last subdivision we lived in in Calgary summered across the lake from us. I had the easiest babysitting job ever that year as it mainly involved sitting in a boat and spotting for a former professional water-skier while making sure none of his kids fell out of the boat. We skied across the lake and I swam in to fetch my friend, and my employer dropped us off on our beach.

We played Masterpiece in the basement as my friend was particularly fond of the art auction phase and had a phrase to go with it that I remember to this day. It was the best I had felt in almost a year. I heard my Dad come in and could hear some surprise in his voice and came up the stairs to fetch drinks for my friend and I to watch his face fall a bit as his statement that it was almost as if I was playing with XXXXX again was answered by my Mom’s statement I was. As I emerged whatever other intense discussion would have followed evaporated of course.

Although in those years concerns about my social life, my functioning and so on would get expressed at times nothing useful was ever done to re-mediate anything. To do so would have been to open the wound of my being defective in the first place as that’s the message I absorbed in my much younger years.

I don’t know if anyone ever tried so hard to not be defective. Probably some have but nothing I ever did was the secret to what everyone else could do so easily. Times were not easy for my parents and we went through many grim things which I will leave out of this for the moment.

In grade 11 I wound up in an unofficial foster care situation. A very caring man who was a teacher at my school and his wife took me in when enough was discovered that my removal from my family was certain. Everyone felt throwing me randomly into a very broken foster care system would be my undoing and so I went for a time to stay with this teacher and his wife.

I was still walking up the stairs, my pseudo foster mother was asking me what I liked to eat and questions like that. Questions I had not been asked in my life ever and couldn’t really work out why she cared. I was accustomed to eating what we had to eat and that was that. In the context I had at the time I thought this concern about my likes and dislikes and potential allergies was very odd.

One might be able to predict with all that I left out that I would wind up estranged from my parents and I did. For many years my doctors felt no contact with them was best and I do think I did need that to heal from everything I didn’t mention. My mother was first diagnosed with cancer just before I cut of connection with them completely and I got a lot of “your poor dying mother” guilt ladled on me but I did what was necessary to make my peace with the life I had so we could have a relationship at some point however limited it might be.

We did get to a point where I could indeed go and visit my parents. It was never free of stress by far but my mother and I had some good times all the same.

5 years ago the cancer that had been assumed to be beaten came back with a vengeance. Something miraculous happened those 5 years. It had started earlier but sped up considerably. My mother started to become the sort of mother I hadn’t known existed when I was young. When I was coming for my visit she was keen to have me dictate what I wanted to eat that I wouldn’t make for myself. She started to send me home with things to heat up and so on. I tended to visit in the summer and as the years between my first stop over really in the company of my brother lengthened the time I could manage also did. Two weeks in the summer started to be fairly routine and sometimes at Thanksgiving or Christmas.

The world regards her courage as being tied into her long fight with cancer but is that courage? It’s true she seldom complained but it wasn’t a battle she chose. In my own mind her real act of courage in recent years was to actually confront in some way the mother she had been and to change that. She wasn’t much into talking about it although sometimes expressed regret for something she didn’t do but every visit, for the parts she controlled anyway, was better. To me it takes more courage to confront things you could have done differently but didn’t and what those things cost you and choose to change than to battle a disease that will claim so many of us. It’s true you get to make some choices even in a fight you didn’t choose about how you go about it but to tackle something painful head on is for most people it seems harder than charging into a battlefield.

She got really angry at my father back in July when I had had a heck of a time tracking down my brother’s phone number for her so she could phone him. I spelled out to her something I had never dared say about how that particular brother was more vulnerable to how our father treated him for whatever reason but that I thought it made it hard for all of us to have a relationship with her.

It was clear she knew that. My father enquired what we were talking about and she spelled it out for him and atypically for him his reply was very mild. In my entire life until that moment I had never really seen her stand up that way to him. There would be the occasional look or a shouting match but things inevitably ended in a draw. Not his quiet monosyllable in Danish that acknowledged he heard and understood and even accepted the truth of it, but apparently had nothing to say about it.

We all went there in December and had a few days together and it was better than one might dare to expect which is fortunate as none of us were able to make it to her bedside in time to say any other goodbye.

I was calling her almost every day the last few months. We had always respected the line about actually crossing the line and uttering the dreaded “A word” but for years already when my mom spoke to me about myself she would speak as if she understood completely how important some things were to me. I was bolder and bolder in how I spoke about my life and she did not yell or deny it but still there was a line I felt was inviolable without causing her pain.

I had as most people know a very difficult year. Well face it we are heading into difficult month 15 now but as part of that of course we wind up seeing a lot of doctors, and having a lot of professionals in and out of our lives. My parents had always previously spoken of me as sick. That being more palatable and I do have horrible depressions co-morbid with my autism although there was a long spell between my last one and this horrible one.

A few weeks ago I said my doctor wanted a new reassessment of me so he could get services more appropriate for my condition. For the first time since I was very young although she did not utter any word starting with a it was clear my mother wasn’t denying it anymore. She said, “I hope they don’t think you are crazy because you are not crazy.” Very firmly.

I said: “ I know Mom. Don’t worry they don’t. “

To which she replied. “Good”

That will be all I ever have from her to say whatever it was meant to say I guess. I know from how she treated me in the last years of her life she had comes to terms with the person I am but communicating how different I am from other people was some last taboo.

I searched her room for some last communication from her. There were things that suggested I had been on her mind in those last weeks of her life. She had added to my previously infamous 3 page baby book, indeed she had created a second album that I did leave with my Dad although it was primarily pictures of me that I had not seen.

People talk about autism acceptance a lot but the fact of it is I spent much of this year beating myself up for the way my autism so catastrophically derailed my life at a time when my mother needed to know I would be okay. I couldn’t go to her this summer. Will never sit on the beach with her again. Never coax her into the water with assurances that it is warm in years when warm is late to come. Never watch her own unique way of swimming from further out in the lake.

My acceptance of it is a not a done deal but a continual process not that different from my mother’s although free of the denial component for the last two dozen years. So many times I have wished I could have been the daughter my mother dreamed of when she tried so hard to have me and then to keep me viable.

Of course acceptance in any relationship isn’t a one time thing is it? I sit and struggle with the pain of wishing my mother could have reached the point she did sooner, or that I could have been stronger and not collapsed so completely as a result of change that I could have been with her this summer. I too would have many times preferred almost any other mother and that was fair enough for the times I thought those thoughts. I suppose in fairness the same might be said for her. That many other daughters may have been more in line with what she had in mind still in the end she was courageous enough to change her ways. She never spoke of the changes or what had driven them. People may speculate awareness of her mortality but I think it would have come nevertheless.

So I sit, and I cry and I miss my mother. The pain and the hurt of many years do not get completely erased by the seasons in the sun and sand and water but they fall into a different context for me. They make me appreciate the act of will it is – and always is to be a better mother to me as I chose to spend the years of work it took to be able to be a daughter.

I went into it all with low expectations but my mother far surpassed them. The love between a parent and a child is a bit of a given but that love in action is not always apparent. In the end we had that.

In the past year when it seemed clear to me her time was near. I sometimes remarked because I feared this very day that this improvement of hers in her mothering would make all this so much worse in the end. Your mother only dies once thankfully so there is no contrasting how it might have seemed if she had remained as she was through much of my life about some aspects of my being but now that my fear has come to pass I think I was wrong. Yes it hurts more I suspect because I have more to miss. I have lost something enjoyable and warm. However it could be that to have lost a mother without ever getting to the stage where the things I did in the end, experience were a given would be so much worse.  I’ll never know.

I love you Mom. Your memory is a blessing and I will remember you in every glint of the sun on the water and each time I glimpse a beach.

DanishbeachMombeachtowel

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