I live an odd life. Odder now in many ways than decades ago. When I was younger and having problems everyone agreed I lacked informal supports. True enough as a young adult with difficulty making friends who had the ones she did have move away or die or in a few instances say we didn’t have anything in common anymore that was true. During the years when I spent a lot of time dysfunctional in one way or the other the only kind of people you could meet were people who to put it bluntly might not make it. Many of my friends killed themselves. I became afraid to make new ones with good reason.
Then I spent a long time where I was still not exactly a model of functionality but I was free of serious depression. I worked at my job, played in a band and had some hobbies on the computer. I gamed a lot and over time not just gaming but the support of games became part of how I spent my time. Things were very stable for over a dozen years. Perhaps a bit on the hermity side if you are one of those people who only counts people who you meet in the flesh as friends but the nice constant state was what I needed to do well.
Of course in life change is inevitable. I don’t deal well with positive change truthfully. I found that out a very hard way but negative change is certainly a rough one and so I find myself 18 months into it still teetering along. It feels much like walking a tight rope I guess in that it doesn’t seem like very much could dislodge the narrow grasp I have on leading the life I have.
Still one thing I know about myself is that it isn’t helpful to have huge amounts of time with nothing to fill them so when I got out of hospital I was eager to go to work. This work is one of the supports you don’t expect. Years ago I started to volunteer for a game because it was very like a game I had worked on as a professional when I found out the hard way positive change is hard. I wanted to keep up my skills as I anticipated continued physical decline would mean that I might need to seriously look at working in a field that had begun at a hobby, briefly promised to be very lucrative and then fell apart and was then going to be a hobby again.
I accepted what I think a lot of people might have had a harder time with (the loss of what would have been a substantial monthly income) much better than I accepted losing my place. People wonder why. I think the answer is obvious enough. The chance, however positive to earn big bucks was a big change. It falling apart ultimately meant nothing changed. It seems sad to me when I try to look at it as if I were not myself but that is why I think it took far less time for me to just settle back into my routine and part of that routine when it wasn’t too painful included being pragmatic about how to keep up my skills.
However pragmatic I was being when I applied to work on the first Gameforge game I would work on as a volunteer it was the start of a big support you don’t expect. Since I had a lot of experience I climbed the ranks pretty fast to the highest non-paid position and had the things I was used to in terms of people to supervise and so on. What I also had was the start of friendships which have grown over the years.
The person I worked for first I still do work for although with might be more accurate even though she is my boss she is very skilled in always making sure he administration team feels it is a collobaration and for the kind of game we currently work on and the community we are it has to be. The person who has the charge of the English speaking community normally is the head of the game so the admins work stretches a bit more and that has been fine.
I told the person who I have worked with all these years that it is odd that I consider her one of my closest friends despite never having met. That can happen when you work side by side for years on various things I guess. She is just one of many people either on my current teams or who I have worked with at one point or even some of our players who are a not expected source of support.
At this point I do some paid work on another game and almost immediately after that started my days changed. One might be tempted to question if this was from overwork but that wouldn’t be it. Although in a nightmare of scheduling my first day of work coincided with my first day of Hebrew class. In theory we could have to use French, German or English in or work and then to march off to Hebrew class seemed a bit much. In practice we so seldom get to the bottom of the English work I rarely get to help out anywhere else. It’s also only a theory that we only work in three languages as our players speak every language that can be spoken and can break the rules in any of them. I can recognize an insult against someone’s mother at 30 paces at this point no matter what language you put it in which I suspect isn’t a very transferable skill.
My “real” boss in the sense he is in charge of the project I get paid actual money to work on was claiming pretty fast that he knew I would work well with one of my other big unexpected sources of support which was he hired me which was part of why he did. I gather when your boss makes any claim you should agree but I really wasn’t expecting for the shape of my day to change so completely by this part time job.
I am grateful to have a job I can do right now from my bed. Knee operations take forever to make a full recovery from and this being my third one I knew better than to even think I would be at my desk any time soon. I am more grateful still though to work with people who are genuinely nice and caring. Just as I am about to go to bed most days I yak with my collegue in Germany so he knows things that came up that might need watching and so on. I always imagined if I was in an office situation I would have to make a special effort not to be too task oriented because I had worked out from tv that people talk about a lot of not work stuff at work. Turns out I can shoot the breeze just fine in text. We do both of course but even on days when we have mainly talked about work somehow I feel better for the contact somehow.
I often also check to see if any of the team I supervise are up and at ’em so I can pass on anything they might need to know or if they have been “slack and idle” as we used to say in cadets remind them about my imaginary whip etc… I suppose a serious downside of supervising people scattered all over the globe is it is a bit harder to get them properly afraid of your whip. Seriously I since many of the volunteers are young adults some of whom hope to be in gaming as a career others with time to kill I like to think I can pass on some useful skills. Lately I have seen some of the people I had as volunteers enter paid positions in our company so I suppose I can take some credit. I had one team member who had had their interview a week before they interviewed for a job in real life that mine had been so tough the real one had been so easy although they asked a lot of the same stuff he got the job without a problem. These sorts of things do something that can be hard when mostly you are seen in terms of what you can’t do. They remind you that you do indeed do some things very well. Well enough to teach others how to do it and to supervise them. That can be something you can easily forget when multiple disabilities have you on the sidelines of life a lot of the time.
While we are covering online supports there is of course blogs. I am new to blogs. I was always more of an IRC and an email person and when IRC especially started to lose people to blogs I felt sad but not motivated to blog. It is odd as I always wanted to write when I was young but sharing a very personal story with the world is not easy. Yet there is support here. In the comments mainly but you get to know some people more deeply. The other day my phone rang as someone had been concerned enough to call . A person I have known for well under a year but whom I admire. Sadly I found out the phone rang after the fact. I had had my phone off for the Jewish New Year and then for Shabbat and after three days with it off the odds of my finding it and turning it on for Sunday seemed low. I am not a huge phone person but if I had managed to miss it in the comments that people cared I can replay the message.
We spend a lot of time worrying about the lack of formal supports and their limited duration. Fretting that without some we can’t do it and I actually still believe that is probably true for how many things we have going on with us right now but it feels odd in a way because for so many years of my life there was nothing but formal supports. I mentioned all the online supports as I think to many they are less obvious but I have a very global informal support system. I think I get some support from every continent except Antarctica. It may be small and it may sometimes not even look like support but it counts. Some is huge and when people doubt the validity of those relationships I get cranky.
I think the tendancy to dismiss online supports is they look too much like what an autistic adult might spend “too much” time doing. That is typing away at their computers. Years ago when I had time to play games rather than support them some of my friends were people in those games. I knew as much about their life as I would if they lived next door and we met for coffee often. The slaying of giant “bosses” (for those who don’t game bosses have the most loot and loot is a nice thing) as we got to know each other no doubt made it easier for me to be social and nearly inevitably because with the slaying of bosses comes the dreaded use of some kind of speech needed communication I would have to explain my autism (if it didn’t come up before then) and I don’t recall, unlike real life, a single person ever being a jerk about it.
An offline support that one might leave out of supports we don’t expect has been my congregation. Generally speaking society expects various congregations to help their members with the things that come their way but in my experience how much a group meets that expectation varies a lot. When I came though the door for the first time at my local Jewish Community Centre for services things were still going okay for me. They quickly wouldn’t be and had I never made it through those doors I would have been in a much worse mess.
When my life and my living situation and everything fell totally apart a year and a half ago they took care of every detail. I was just to concentrate on getting well and leave everything to them. Since for the first month I couldn’t get out of bed even if I wanted to I didn’t have a choice but I wasn’t used to it either.
Every previous time in hospital I had been “that patient”. Nurses know the ones. They get no visitors or so few they wind up on the nursing staff radar. You inherit second hand flower boquets and days of tv when other people go home and so on. Last spring my room was so overrun with visitors I more feared that they would get thrown out for being rowdy than the pity I had become pretty used to from the staff. This year the timing was more awkward but I was still well looked after. Food arrives on my doorstep, people have gotten organized about cooking for me. This year cooking is a special concern because I have lost enough weight for it to be concerning. I had a lot to lose but there is something to sterotypes and you will never convince the friends in my congregation I am not one cracker away from death’s door. It’s been something I have had to adjust to having this level of support in real life. Going to a service or a dinner and knowing when people ask how I am they really do want to know and if they don’t care for the answer they will likely set out to do something about it.
I have played in a band for close to 25 years. It is part of the non-profit, The Friends of Music Society, and as causes go it is a good one. I guess that is why in the seasons when other bands did sniff around for percussionists I stick around. I am also on the board so in a way I expect it now not to be so much support as more work. Still we had our first rehearsal the other night. I am in no shape to be there to be honest. Given I cannot bend my left leg we had known for half a year that there would be no hi-hat at some point but stamina wise it was a bit much for me that first night too.
I don’t know why I don’t expect there to be support there. The support is largely in the familiar people, and the familiar routines. The other way it is supportive is similar to how when I work I can see the skills I have. The same thing happens at band. With my leg being in a brace people were popping up to arrange things for me and expressing more concern but the rest of the time we were playing and I wasn’t getting a lot of leeway on missed triplets either. I made a pathetic plea for some sympathy as I had opted out of a measure of them thinking I might throw-up if I moved enough to do them but we went back to the beginning of that section all the same. I suspect as long as you have a pulse you won’t get much leeway out of our conductor and that is always how I have liked it. It has made me a better drummer and when we go out and play for the elderly or the public or for group homes it is a positive identification to have versus everything else I might spend some of the week being musician makes a nice break and it wouldn’t be an honest break if it didn’t go with expectations on the part of the conductor.
There are more but I should have been asleep hours ago if I am ever going to reset my sleep schedule. Oh hold on there is one I can’t not mention and that would of course be my dog. He again doesn’t fall in the category of support you don’t expect because you expect a dog to be a support but he is the most spectacular dog in the history of dogs. He had his fifth birthday on Sunday and there really are no words for how much he means to me. When things looked very grim for finding housing that accomadated both of us I did contemplate homelessness. I am too physically badly off for anyone to let me entertain that notion for more than a half a second. It is however a measure of what he means. I think he goes well beyond what I expected when a month after my previous dog I went to pick up an entirely different dog. He should have been a female from an entirely different litter and my fate was sealed as soon as I said I better just play with him for a moment or two or I would always wonder. Sorry to that dog that was to be but you should have gotten Shadow to show you some tips in all those weeks you had getting old enough to go to a home.
It’s almost a cliche how much a dog can help I guess and so yes people do expect it but much like congregations I guess there is individual variation. I have never met a dog I didn’t like but Shadow is supportive and important beyond any expectation.
I don’t know what will come. I can make some guesses about some of my issues. Some of the guesses are not good. I don’t know if we will get appropriate support in the appropriate time frame. The odds are against it. Things at time look pretty grim but I do have work I enjoy, colleagues I enjoy, friends both of the online only variety and the in person kind, enough granola bars and ensure to support a couple of city blocks through an earthquake or two, some recreation (not enough according to my sister-in-law) and the best dog in the entire world. So while the darkness and the pain and the fear can be all consuming I have marveled at these other aspects of my life. They don’t erase a lot of what is not going that well but no one can. There’s just so much going on some of which just needs to be dealt with and some of which well I have no idea and those are the things that scare me the most.
Overall the outcome is certainly far from known and that is a source of stress but that’s really the way it always is. It is just most of the time things are set up better to hide this fact from us. For people who were very worried or scared for me I wish I had some great comforting thing to say but I don’t know how things will go. I hoped given we know the formal side of support is going to be a battle and it’s a battle that has historically cost me a lot listing the less formal, sometimes totally unexpected kinds of support would help. Now it is time to help my dog who is currently asleep next to his teddybear on the floor because he gained weight this summer and gave up trying to get back up here into bed and try to sleep myself.