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Category Archives: Poetry: My Creative Outlet

Autism: Hostile World

I don’t belong here.

It has been the resounding theme of my life.

Unliked. Unwanted. Not like them.

Not trusted. Not accepted. Not belonging.

I want to be liked.

I try to fit in.

They allow me…

Because it is Christian.

Because I am… family (of a sort.)

But not because I belong.

I don’t.

First they let me know;

By glances and actions rather than words.

I try harder, and harder still.

And rather than improve their acceptance of me –

It gets worse.

They don’t want me there, and…

I wish I could be a person who doesn’t care.

But of course I care.

I’ve always cared.

Yet if I can’t be accepted,

My impulse is to run.

Maybe another school,

Another group,

Another part of town?

Maybe another province,

A city where I have never been?

But wherever I go,

Whatever I do,

There I am:

Not belonging.

So I build these worlds.

These fantasies in my mind.

And the more pain my reality contains,

The further from reality my fantasies take me;

Until there is little left

To bring joy or relief

In the world around me.

So much fear.

So much pain.

I would spend most,

If not all of my life,

Dreaming;

Just to endure it.

But the older I get,

The less the dreams satisfy;

For I know my dreams,

These fantasies,

They won’t come true.

I return to a world that feels hostile to me.

Alone and fearful and full of pain

Thinking “maybe if I try harder,

Try harder,

Try harder…”

But the harder I try,

The less I belong.

I wish I didn’t care,

But I do.

I am still nothing more than that small child,

Crying to sleep at night

For being abandoned in a big, frightening, painful world

That never wanted her.

me at 7

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Autism: Real Desires of my Heart

Yesterday I spent a couple of hours in the afternoon taking multiple career quizzes on a job site. I do this a lot! Although the responses have never matched with who I am (I have no idea what I am doing wrong, as I always answer the questions with complete honesty) I still have hope that one day something will be listed that gives me an “aha!” moment.

True, that has not happened yet, despite the many years I have been taking these quizzes, but maybe someday I will find the quiz that does work for me.

The multiple quizzes I took yesterday were all on the same site – a work site for Alberta, Canada. I don’t live in Alberta (though not far away, either) but I will take anything I can get.

When I got my results, it came up with things like accountant, or statistician, or tax auditor, and other jobs that require strong attention to detail and a lot of time staring at a screen. It isn’t that I am bad with numbers or anything, but that level of detail and focus on a screen leaves me both severely anxious, and exhausted – which leads to depression. Above that, focusing on numbers that long leaves my eyes stinging, and my brain fuzzy – so the focus I enjoy much of the time would still not help me maintain the level of accuracy required for such jobs.

No good.

Just like other quizzes I have taken in the past, which tend to list things like physical therapist, acupuncturist, or such things (when I can’t touch people I don’t know, and hardly touch people I do know, and am unable to work with other people in such a capacity) the list doesn’t in fact reflect who I am.

I suppose that is because there are so many facets to my ability, or disability, that the standard questions don’t take them all into account – which is completely necessary for me. For instance, I have a lot of trouble with pain in my feet, which radiates up my legs and causes back trouble. That and the fact that I am so often exhausted excludes any physical type of work for me.

Then there is the Autism, which includes severe sensory issues (food, touch, smell, loud or repetitive sounds… all out!) My anxiety grows to panic when dealing with people at all – and that includes one on one. Although I can focus, I tend again towards panic and depression when I am expected to maintain a high level of accuracy, or spend a long time focused on something outside of my current interest. I might be able to maintain an accuracy sufficient enough for my employer, but the cost to my mental health is very high for me.

After taking several quizzes and questionnaires, I came to a part of the site which asked me to imagine several scenarios: Imagine money is not an object; or, imagine you had a magic wand, and could make your life anything you wanted… there were several similar ideas followed by the questions: Where are you living? What are you doing? Who is with you?

Of course, I can imagine things – especially if a magic wand is included (which, being a Christian, is not likely a good thing – but I feel so very powerless in life, the longing is hard to shake.)

So I answered:

I am living in a small cabin by a lake and far away from people. I am living with my husband, son, and many pets. We have really good internet service, but in many ways are self sufficient – wood stove, large food garden and fruit trees, well water, etc. I spend my time writing, taking care of my pets and garden, and swimming and kayaking on the lake.

sunflower-garden

I like the idea of that life, for in my mind it feels so calm and quiet, and the very thought leaves my entire body and mind sighing in relief. I want the lifestyle, but… it wouldn’t pay the bills. Writing for income is another recommendation that doesn’t fit me well, for I can’t handle criticism at all! It destroys me. And writing is one of those professions that gets a lot of criticism – which is the reason I have not shown the book I did write (though I do like it) to anyone else.

Also, despite the fact that I try every year, I haven’t got the skills or the energy to grow much food even where I am. Nothing but my imagination can bring me to a place where I consider I might be able to do this – and then, in my mind, I have some type of magic that makes it easier for me. Bad.

So while the exercise was a lot of fun, and for a while in my mind brought me to a place where I found peace and contentment (the real desires of my heart) it didn’t actually help me to live within the reality I have been given.

 

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Autism: Driven By Compulsion

This morning I have such a strong desire to research floor plans for houses (for no reason other than it is an obsession of mine) that even coming to write my blog is extremely difficult. Yet I am two posts behind – for my posts that are scheduled three weeks in advance in order to reduce my anxiety – and I must write. For every word, however, I ache to pull out a pad of paper to draw, or to open up my internet browser and search.

My sleep has been broken lately, and that really doesn’t help with my functioning level. It is my own fault, really, for I will continue to eat the gluten that causes it. It is just too hard to change the foods I eat long-term, for the change always leaves me feeling sick.

It also doesn’t help that everything keeps me awake: my husband snoring, my cat purring, wrinkles in the sheets, not enough room to stretch out (which causes me pretty bad back pain every night), static… my house is so dry right now that every time I move at night I see flashes of light like fireflies flying off of me in all directions. I worry sometimes that the sparks will start a fire!

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It isn’t only at night, either. During the day, my dogs come to give me kisses, and get shocks instead. The zapping loudly breaks the silence. I am not sure what to do about it. I do use fabric softener in my laundry – but then I like wearing fleece, and fleece on fleece seems to increase the static.

I am tired. I am not thinking well. I am not functioning well. My nose is irritated, and often bleeding from the dryness in my house… I suppose I could get a humidifier, but they scare me. Once, when my son was about 6 weeks old, we got a bad cold. I put on a humidifier (as the baby books suggested) and my cold dropped to my lungs so I could hardly breathe. I thought I was going to die – I really did. Ever since, the very idea of using humidifiers has caused me strong fear.

When things are going like this for me, it is my fixations that drive me. When my functioning is low, all I can do is give in to my obsessions and compulsions. For this week that means playing Sims 2 Pets on the PC, watching ‘Angel’ on Netflix, and drawing and searching for house plans. Not at all productive, but I haven’t the strength or energy to fight it.

Besides, I have spent several hours cleaning this week. I did visit with a friend, and talked on the phone to my mom. I have taken care of my dogs, visited with my cats and son, and made supper when it was my night to do it. I might be spending nearly all of my time right now on my fixations – and that isn’t great – but I also need to remember all of those times when I did overcome the compulsion, and took care of all of those things that really needed to be done.

So rather than focus on where I was stuck this week, I think I should really be thankful for where I succeeded… I wonder if that might be a better way to respond to all people – after all, every one of us struggles with something.

 
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Posted by on January 25, 2017 in Poetry: My Creative Outlet

 

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Autism: Overwhelming Empathy

Last night, I got three hours of sleep. It wasn’t even all together, either, and I am really feeling it today. The thing is that I have been so nauseous lately that I end up eating all the wrong foods just so I can eat something. Yesterday that included English muffins with peanut butter. I know that wheat gives me insomnia, but that is my ‘go to’ food when I am nauseous (which has happened more often than not throughout my life) and I didn’t know what else to eat. If I didn’t eat, it would have just made things worse. It is pretty bad when one of the main activities for staying alive makes it so hard for me to live.

Anyway, as a result, I am hardly accomplishing anything today: A couple of loads of laundry, my lessons, and hopefully this blog.

I picked up a ‘new’ book to read last night, and for the fifteenth time in as many years read the chapter that hurts every single time I read it. About one hundred and forty years ago, someone’s dog died. The tears began before I even read the words – after all, I have read this book fifteen times: I knew it was coming. It wasn’t just a few tears, either, but such a deep heartache that I felt in every fiber of my being.

The dog died. That is just so wrong.

It doesn’t matter that he was old, or that he had walked so very far, or that he survived several books earlier when they thought he had been lost. I mean, yes, I was thankful he survived back then. I was thankful to read that he had lived many years after… the thing is, it is never enough.

This wasn’t my dog. She wrote well, and I felt that I knew him, but it wasn’t my loss. Still it hurt. It hurt a lot!

The tears started, and grew, and grew, and pretty soon I was near hyperventilating.

Her dog died, and she knew that she was grown up, because now she had to move forward alone. I cried for her being alone. I cried for the dog who was buried by the path he loved so much, but who would not be moving along with them. I cried for them, despite the fact that they lived so very long ago.

I cried for my dog, who died suddenly four and a half months ago. I cried for the dog that I read about in the news, who died in a house fire beside a young boy, who also died in the fire. I cried for the boy. I cried for the dogs in shelters, and the ones abandoned or abused. I cried for all my dogs who have died, and for my cats, too. I cried for my dog who is alive, but won’t always be.

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I cried for all the losses I have experienced, and I cried for all the pain that is in the world. I cried for hungry people, and broken children, and broken adults, and all who are lost and will never find their way home.

I cried for about two hours, and then I washed my face, and said goodnight to my husband. As he fell asleep, I started crying again – for the pain of nearly one hundred and forty years ago is just as real, and felt just as strongly today. And I feel the pain of the world, and I feel it so deeply that I can hardly move on.

So you see why I have to block it out? You see why I might struggle to respond well to the pain of another? It isn’t that I don’t feel, but that I feel so much, and so deeply, that I become overwhelmed.

 

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Autism: At The Hockey Game

On Saturday evening, my husband invited me to a hockey game… okay, he didn’t exactly invite me… first he asked if our son would like to go. Our son likes computers, and video games, and movies, and… nowhere in his list of ‘likes’ are sports of any kind. “You can ask him,” I suggested. Of course he said, “No.” Leaving the house, being with people, watching sports… that is not our son.

Then my husband called up his friend, who was busy with family, seeing as this was Thanksgiving weekend (Canada.) So I said, “I’ll go.”

Surprised, he responded, “you will?”

“Sure, if you can’t find someone else to go.” I suggested another friend, but he lives too far out of town now.

“No, you can come,” he said.

So, when he got home from work on Saturday, I was ready to go. We had our supper, and I brushed my teeth – because leaving the house without brushing my teeth would leave me thinking of nothing else all night long. So gross. And we went out in the pouring rain.

It was raining, hard! I waited behind the van as he put up his hood (I didn’t have one) and then we walked together through the rain to the hockey arena. The parking lot was packed, and there were people everywhere. We thought a lot of people must have decided to bring their family to the game for Thanksgiving – and were later surprised to learn there were only a little over 1,000 people there. Maybe something was going on at the college or community centre, which both share a parking lot with the hockey arena.

We found our seats, but there were some kids in them, that my husband had to ask to move. We were right above the… okay, I am not a hockey fan, not really a sports fan, so I don’t know the terms and I am thinking I am wrong… the dugout? For the home team. They just moved to the other end.

Going to a live game is quite different than watching it on TV. It is like when I was a teen, and would go to the Ti-Cat (Canadian Football) games with friends. I enjoyed them, though I never watched football at any other times, and I enjoyed this.

It isn’t the first time I have been to one of their games, but it has been a while. I don’t understand the rules of hockey, but understood enough to know that when our team (in… was it purple and white? Or maybe black and white? Should be purple, like on their bus… anyway) got the puck in the other team’s net (they were in green, I remember that), it was a goal, and that was good.

They were great skaters, so that was fun to watch, and right away in the beginning of the first period, our team scored three goals! That was exciting. The other team didn’t score any goals all of the first period. In the second, I think they got two – and we didn’t get any… hard to remember – but our team won 6:3 or 6:4 or something.

Okay, so not a huge hockey fan. I watched the game, and found it very exciting – more, though, was that I enjoyed spending that time with my husband doing something he enjoyed. I can say for a fact that I never love him more than when we are doing something together – even something more to his taste than mine.

Easter 2016

So although I was out in public, in a crowd, in a noisy place, watching a sports game, and pretty much doing a whole list of things that aren’t my thing, I still had a most enjoyable night out.

 

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Autism: Barefoot in the Kitchen

The best things seem to happen when they are unplanned. Not that I am a spontaneous person at all, or that I like surprises, or even that it is normal for me to do great things unplanned. It is just that sometimes, the planning itself is so… involved of an activity, that by the time I am done planning, I am exhausted.

My plan for the day was to go shopping. It might only take a couple of hours, but for me, that is often too much. When I get home, I often crash, and fixate on Pinterest for the rest of the day. Knowing this about myself, it is rare that I will chose to go out on a day I have something else to do, or to do something else on a day that I have to go out. It is just who I am. Good to acknowledge, I guess, since I have been unsuccessful in all attempts to change it.

However, while I was downtown, my husband picked up a box of peaches from his work ($3 instead of the $13 they sell it for in stores) and put it in the van. I knew I would have to preserve them somehow, as there were way too many for the three of us. Canning wasn’t an option. I hadn’t the equipment, or knowledge on how to do it. I could dehydrate them, but then I would be the only one who would eat them. So freezing was the way to go.

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True, I didn’t know how to freeze peaches, but I searched it online and it seemed easy enough. Suddenly… “well, if I am going to be in the kitchen anyway…” I went out to my garden, and brought in a large bowlful of kale. Another accidental plant! I planted the seeds in a pot last year, which didn’t do great. I emptied that pot into a raised garden for the soil last spring, and now I have a lot of nice looking kale – which I have mostly been ignoring until now.

So the peaches were washed, sliced, dipped in lemon water, and spread on prepared freezer trays. The kale was soaked in water with apple cider vinegar to clean it, torn into pieces, lightly coated in a mixture of oil, salt, and nutritional yeast, and baked in the oven for 10 minutes.

It doesn’t seem like much, but there were a lot of peaches, even given the fact that I kept 20 aside for eating fresh. That, and I don’t usually multitask well. In this case, I think I did okay. I had 10 minutes between batches of kale to work with the peaches, before having to prepare another batch (I think I had three or four batches of kale.)

After all of this, I decided to make peach crisp for dessert with a few of the peaches. So I worked on that as well.

For four hours I was in that kitchen, on a hot day, with the oven on. Four hours! And I thought, “barefoot and in the kitchen…” and laughed. It was meant to be a derogatory saying, but I always wondered why – especially as a child. What is wrong with being barefoot and in the kitchen? I know I am missing part of that saying – but being pregnant is a difficult thought for me, since I can’t, and would love to be…

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Anyway, I really enjoyed my afternoon of working in the kitchen. How can someone be upset about doing something they are supposed to do, and capable of, and… okay… here is where I struggle to put myself in other people’s shoes. I am not a great cook. Not that I hate it, but I definitely prefer fruits and vegetables (and baking, but that is bad for my weight, and many other things with my gluten intolerance) to meat (yuck!) and that is what my husband and son would have me make. Plus if there is someone else even close to the kitchen, I cringe – and then proceed to drop things, and make a lot of mistakes, and become defensive, and…

But yesterday, on my own, working in the kitchen, I felt I accomplished a great deal – and that made me feel really, really good! And despite what so many people believe, those kale chips were so delicious I struggled to stop eating them (and people call me picky!) Good as bacon. Better maybe. Yes – I am serious!

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I had a great afternoon! And then I crashed – bad… but at least the day was good.

 
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Posted by on September 9, 2016 in Poetry: My Creative Outlet

 

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Autism: A Week of Wheat

For about two months I was completely off of gluten, though I continued to eat oats as they didn’t seem to have the same effect on me. The plan was to try wheat again before my summer camping trips so that I would know for sure if this was an issue for me.

But then my dog died, and I knew that time wouldn’t make for an accurate test, for the pain was deep, and my functioning was low. Then we got a new dog, and that time, too, wouldn’t reveal the true effects of wheat on my system. I was very anxious, still in a lot of pain, and still not functioning well.

Knowing it was likely a strong issue for me, I tried for weeks to plan gluten free foods I could eat while on my camping trip – but as I said, my functioning was low. I am not even sure I could have done it when I was well. Food has always been a struggle for me to begin with. There are always multiple things standing in my way:

  1. I cannot prepare meals, and struggle to eat at the best of times, when with other people.
  2. Where we go, there is no running water (we bring water) no electricity for cooking (only solar panels for charging devices), just a couple of propane fridges to store everyone’s food (a few years ago, we didn’t even have that. I am thankful), and a barbecue where meals are prepared (often communal, and since I usually can’t eat what others are eating, I have to make my own, which I can’t do with people around, or on propane stoves.)
  3. I am not only gluten free, but am also very allergic to eggs (a staple camping food, which always scares me), intolerant to dairy, allergic to Kraft dinner (another staple, and even the smell leaves me very nauseous) and don’t eat meat, pasta, or mushrooms. Plus, processed foods very often leave me sick immediately after eating them.
  4. When I am hungry, I am strongly prone to meltdown, and can no longer think. The hungrier I am, the less I can tolerate food, and the lower my functioning is. So to leave me to get through that on my own is a bad, bad, idea – yet that seems to be the natural solution for people. “She’ll eat when she is hungry,” they say. No! I need productive help to get through it, and if I am already hungry, I can say that will be hard. Best not to go there in the first place. And no, I cannot help it or avoid it despite my very best attempts at planning.
  5. I make much of my gluten free/vegan foods from scratch at home, when I am alone. But they don’t store well, defrosting (or even expecting to find freezer space) would be very challenging, and it is likely (being communal meals) that I wouldn’t have the space to cook even if I could cook with other people around (which I can’t.)

Eventually I came to the conclusion that I would have to eat both meat and wheat during my nine days away. Even then I have had issues. Here are the results:

  • day 1 – really bad heartburn, with some extra trouble getting to sleep
  • day 2 – increased fears and controlling tendencies towards what other people were doing with food
  • day 3 – complete meltdown, unable to think/function/eat when others chose beans and wieners for lunch; cried for over an hour, massive headaches all day, bad heartburn, trouble sleeping
  • day 4 – continued controlling tendencies, inability to think clearly, anxiety around food, struggles with emotional stability, fuzzy thinking, full meltdown in bed when everything (hair, clothes, skin, blankets…) severely irritated me – my husband left to sleep in a camper, and I had to drug myself to sleep.

All of these things continued and grew worse as I ate more and more gluten (since it was present at nearly every meal, and often the other foods were even worse for me.)

This is not likely something ‘they’ could test for. I don’t believe I have Celiac disease, and if I didn’t have the language to express this, other people would likely not make the connections. Yet it is a very, very real issue for me.

Vacation July 2016 014

 

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