Quiet No More

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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8 thoughts on “Quiet No More

  1. I wanted to leave a comment to let you know I was here and reading and taking in all of your words. I don’t really know how to respond so that you feel my support – such a distance away – but not as far as many. Your writing moved me to tears… and I am sending positive thoughts …and will be thinking of you every time walk in the rain and I rescue a worm from our west coast puddles. ((Hugs))

  2. Thank you for this post, Gareeth. I know you aren’t out of the woods, but I am just so happy to see you writing again. Your words are powerful and they are important for others to read. I am sending you all those “hoping-you-feel-better-get-the-help-you-need” sentiments and much, much more. With love, Ariane

  3. (((Gareeth))). Thank you for being so brave and generous. You have give a great gift in sharing your humanity with us (me). Please know you WILL find your way, and that you are so strong. The doctors and administrators may never find the way to help, but you will, for you are strong. And smart, very smart, very very smart. Information is out there, and you are atypical, and use that as your power. Take that tremendous focus and pour it into each specific challenge you are facing. Do not give up or feel you must resign yourself to misery. No matter what life hands you, bright joy is waiting…REALLY!!!
    I have been left speechless, and lost a complete day to the Issy issue. How I yearned to say something! Oh, I have SO MUCH I want to say, and cannot! I lost an entire day to tears and remembered fear, fear I do not share in a public way. My job as an entertainer is to brand myself as a means of bringing happiness, and I am so very happy, but it was not always so. I will just say I know. I know you. I know Issy. I found my way to happiness my way. I am grateful I had a mother who deeply imprinted in me that I had the capacity to do so, and that there would always be no other option. I was to be a survivor. She gave me that, and I give it to you.
    My mother said that, of all the people who go through major tragedies, 99% would be crushed and embittered the rest of their lives, but the 1% that made it, REALLY made it. I am giving this to you. A big, fat, beautiful bag of spoons, wrapped in a fluffy bow. Choose happy. No matter what your lot is. Choose happy. Know the worst sorrow, and face it square on, and use it to find happy. If you need to get mad at my words, so be it, get angry, and use that strength to find happy. You are strong and smart, and that is all the tools you need to get there. Be kind to others, and make that a priority, as that will protect you from unnecessary battles. Say you are angry when people ask how you are. Say it with clear, honest dignity, and ask politely how they are. Laugh at yourself and love everyone, even if you don’t like what they do.
    Thank you, dear, dear Gareeth, for this gift. You, and you alone helped me find at least some words. I hope it is processed by you as a big hug, rocking you gently, and telling you how amazing you are, for it is true. ❤

  4. First, lshana tova, I wish you a happy new year. I have enjoyed your blog and I know the loss of your mother must be especially difficult this time of year, probably all the time. Your blog has served such a purpose for me, you have assisted me in understanding. I am saddened by what you have been experiencing. My daughter has been expressing how the transition in her life currently is overwhelming her, shutting her down.. I am able to see this. She craves the structure, it keeps her grounded.
    I do hope things become better. I hope nothing i wrote was hurtful to you. Your writing is emotionally moving for me.

  5. L shana tova . Nothing you have said has been hurtful I suppose I should ask the same of you it being the time of year for it.

    I hope your daughter finds the structure she needs soon. I am not sure why it is such a tall order in the societies we live in. It should be possible to have structure and still live as adults. The best my doctor could do was a group home without my dog and there is no way that will ever happen.

    Ariane I am glad it gave you the courage with regards to the comments. I couldn’t work out why they had not been addressed but since you had said what you were doing I concluded you would get to them eventually but them being somewhere I generally consider safe bugged me enough I eventually had to say something.

    Support no matter how far away is a good thing. It has sometimes surprised me how little distance matters sometimes.

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