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.