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Monthly Archives: April 2017

Autism: Shouldn’t Have Gone

After several months of exhaustion, I finally had some energy. Every day I got more done, and felt better about the way my life was going. And then…

It rained.

It rained for days, and I felt myself growing more and more hopeless and tired. Try as I might, I could not bring myself past the depression, or regain the hope I had so recently held. For rain? I wondered. And likely that was a lot of it. Certainly it was all I could think of. Until…

I went to life group (Bible Study) and was reminded of what we had talked about in church last week. I guess I had blocked it out. I used to be pretty good at that – or so I thought. I spent years dealing with that very issue. I should have been past it already! At least I thought I was mostly past it.

Sure, there were moments when the memories overwhelmed me, but it isn’t like I think about it all the time. It isn’t like it affects me all the time. I mean, lots of woman have gone through it, right? But most women still live okay. Isn’t the statistic like 1 in 5, or 1 in 3 even? If so many people have experienced it, why should it cause me so much pain?

I dealt with it for years. Most people close to me know about it, it isn’t like I am carrying this big secret alone or anything. Plus I have my faith. So many people don’t even have that.

Forgiveness has been given. The man died long ago. I don’t experience that anymore.

Unlike for most of my teens and early twenties, I am able to close my eyes without having to battle against flashbacks most of the time. They only come when I am talking about it, or thinking about it, or… someone asks about it.

Maybe that is why the week has been so hard. They weren’t talking specifically to me, but I still knew this was my history, too. It made me think about it. It made me remember.

But the week wasn’t so bad. Sure, Sunday at church was hard – but the afternoon was nice, and I spent it outside. I forgot, as I replaced my negative thoughts with plans for my garden. Monday, Tuesday, and Wednesday were alright, too. I had energy, and got a lot done in my house. Thursday it rained, and though I forgot the message, as the time for life group grew nearer, I realized I really didn’t want to go.

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Only, aside from how chilled I felt due to the rainy day, and how much I would have rather spend the evening with my dogs, under my blanket, watching Netflix – there was no good reason I could find not to go. So I went. And then I remembered, and realized it would have been better for me had I stayed at home.

So Friday was really hard. I was so depressed that nothing at all seemed to have any hope. “What is the point,” I thought. “Nothing I do will make any difference anyway.” It rained and rained. It rained so much that a couple of houses not far out of town were flooded, and destroyed by mudslides. (The people were okay, but maybe the pets weren’t.)

Well, the days were rainy, and the days were hard – and I thought it was all about the weather. But perhaps there was more to it than that.

 

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Autism: Vulnerable

There I sat, on the couch, in another person’s house, with a blanket over my legs. Though it was only a few days before, I had blocked out the message – yet when my husband handed me my study sheet, it all came back to me.

It was going to be a difficult night.

The message? Dinah, daughter of Jacob, had been raped and was being held captive. Her brothers tricked the tribe involved into having all of their men circumcised. “While they were still in pain,” they killed them all, and brought Dinah back home.

Hard biblical stories which aren’t found in the children’s bibles. Difficult messages full of pain.

I remember listening on Sunday thinking, “I can relate to this story, yet… I am not struggling with it now.” And I believed that while I was in church. Then I went home, and my mind was flooded with flashbacks, and pain, and all the ways this history still effects me today.

Years later, it still effects so much of how I live and view the world. Right down to pretty much every thought, every emotion, longing, fear, desire… everything about the men around me.

It makes me vulnerable. It reduces me to the state of the child I was silently begging for someone, anyone to rescue me. A child who learned early on that popular opinion on who is and isn’t a good person was fatally flawed, so she could never believe what other people agreed as truth. A child, struggling to trust anyone to protect her – even God. A child who believed there must be something fundamentally wrong with her to cause her father to use her in that way.

me at 7

Beneath the Autism that made it hard to speak, confusing to be around people, isolating in my ability to fit in, painful in the overwhelming sensory struggles… Beneath the failures throughout my adult life which shattered whatever confidence I once had that things “have to get better.” Beneath the exhaustion which often overwhelms me so I can barely move. Beneath the hurt of a lifetime of people telling me I was doing things wrong. Beneath it all, there is this – and this affects everything.

I walked out of the church, and noticed several women in tears. It didn’t shock me. I was one of them, yet… for the moment I still felt okay. Until I got home and realized I wasn’t. Not at all.

And there I sat with the paper in my hands, and though I was cold, I was filled head to foot with heat that was shame… I guess it was shame. I couldn’t move. My ability to communicate locked up in my head as it constantly did when I was a child. I couldn’t have spoken if I wanted to; I am not sure I did want to.

What would have been the point?

So I heard what was being said, but all I could do was sit there locked inside my body, hating myself. I couldn’t look at any of them. I couldn’t look away from the study sheet – and though there were only a handful of questions, I spent much of that hour reading them over and over again.

I thought I had mostly gotten past it. What I realized anew this week was that it is still very much a part of me, and likely will be until the day I die.

 

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Autism: One Event

About five days ago now, as I was struggling after the Handy Dart bus I had booked to bring me home last Thursday didn’t show, I got a phone call.

For a long time I haven’t been answering the phone when it rings. Not only do phones make me anxious from the moment they begin ringing, but our corded phone was in the dining room, and Molly – the elder of my two Chihuahuas is nearly always sleeping on my lap when I am sitting down. To get to the phone on time, I have to get up quickly (without dropping her) and run through a near obstacle course of furniture to get to the phone before the answering machine picks up.

I almost always miss – and when I don’t, it is almost always telemarketers, making me wish I had missed.

On the Thursday in question, however, I had finally broken down and purchased a cordless phone set with gift cards I have been saving up over the past couple of Christmases. The one cordless phone/answering machine combo we do have is 17 years old. We replaced the batteries on the phone at some point, but it stopped working a couple of years ago.

While I was running my daycare, I did buy another set of cordless phones, several years newer than our combo, but I could never hear people talking to me on it. For that reason, I avoided purchasing more for a long time.

I have been leaning towards trying it out again, with the help of my gift cards, for several months. The reason for this is: 1) our corded phone is in the dining room, with only a hard dining chair to sit on. I don’t talk often, but when my mom calls, we will often talk for hours (since it is years between visits, and months between calls.) and 2) my finicky cat decided that our dining room was her new bathroom, and we had no choice but to put the litter box in there – which sits beside the corded phone.

We do have three more phone jacks in the house. One is in my husband’s bedroom, where I don’t exactly want to talk on the phone. The other two are in my son’s suite.

So I got a set of cordless phones with an answering machine and call display. Since the second phone doesn’t need a jack, I plugged it in beside my chair in the living room. I can now look at who is calling, decide to answer, and pick up – all without dropping Molly off of my lap. I still get anxious, but it is better.

All that to explain what happened on the day in question.

I was anxious, depressed, and feeling quite powerless that Friday – because the bus I booked never showed up. I was crying a lot, and feeling quite sorry for myself. Suddenly the phone rang, and though I didn’t recognize the name, I saw it was some doctor’s office, so I answered.

It was to book an appointment for me to see a nerve specialist for troubles with numbness and tingling in my hands, feet, and face – which I went to my GP about early last fall. It took me completely by surprise, as this is the first I have heard back from them, and they booked the appointment for not two weeks into the future.

The difficulty is that I have to drive to a city 45 minutes away for this appointment, and already I am severely anxious and struggling to function over the missed bus. I hate driving, and I really, really don’t want to go.

As you might be able to tell from this post, my brain has been scattered since. I mean… I guess I am glad that I answered the phone that day, for phoning back would have been harder on me – so the whole story about why I bought the phone maybe isn’t that important to the post, but…

All of this to share how one thing can lead to days, or even weeks of low functioning for me. One bus that didn’t show. One phone call. One appointment two weeks away. One… and during that time, I can’t do anything but wait for it to be over.

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Autism: When Bad Things Happen

“The more you experience something, the more you will realize that nothing bad is going to happen.”

Only bad things do happen. They do. And my anxiety, and my depression stem from bad things that DID in fact happen. Maybe that isn’t true for everyone – or at least it seems doctors and counsellors are trained to respond as if our fears are ungrounded – but it is true for me.

So in spite of the strong anxiety, I did try.

I picked up the phone, with my heart thumping. I dialed the number, and got… a busy signal. For the next hour and a half, I pressed redial on my phone every minute or so, and every time my anxiety increased. So I gave up.

I emailed instead, asking if it was normal for the phone line to be busy for so long. I just can’t do that every time I need to call. Phones are hard to begin with, but when I get up the courage to pick up the phone, I need it to go through. I have been rehearsing what to say in my mind, and am never more ready than in that moment to speak.

The busy signal throws me off, so if someone does answer after, I stumble over my words, and feel like… well, “idiot” is the word that comes into my head over and over, as in, “I am such an…” I should probably work on that. Humiliated, I guess, is how I really feel. Messed up again. Can’t get anything right.

“Their phone line is down this morning, and they haven’t been able to make or receive any calls,” was the reply. Okay. So not typical. I can try again.

They called me when their line was fixed, and I booked the ride a little over a week in advance. With high anxiety, I went down with my husband on his way to work, did what I needed to in town, and waited for the bus to pick me up and take me home. I was an hour early for pick up, but got picked up on time, and was home in 15 minutes.

“Okay,” I said to myself, “maybe I can do this.”

So a couple of weeks later when my son asked to go downtown, I said I would book the bus (this isn’t a fixed route bus, but a direct route bus for people with special needs.)

I was really anxious, because this time I had to not only book the trip, but ask if my son could come with me. I made the call, and they answered right away this time. I mentioned my son, and asked if he could use the tickets (which say on them only to be used by registered handy dart users.) They told me they would put him down as my ‘attendant’ and he would be free. “Is that okay?” I asked, “I could just give another ticket.” “It is perfectly okay,” they responded.

I told them where I wanted to be picked up, and that I already had a ride into town, I just needed to get home. Having OCD on top of my autism, I said it several times to make sure they got it. Then I hung up, feeling good (as if I had just climbed a mountain or something.)

My son and I went down with my husband on his way to work. We did what we needed to do in town, and were 45 minutes early getting outside to wait for the bus. Coming close to pickup time, we walked closer to where the bus would stop (I knew because that is where they picked me up last time.)

A man started smoking beside us. I said, “Uh-oh” as he pulled out his smokes, and I got up and started walking away. Bad smells. Bad. It was hard to get away from, though we were outside. It was as if the smoke followed and circled me, and I couldn’t get away from it. Finally I found a space with ‘clean’ air, and stayed there.

I looked at my watch. It was time. My heart was racing. The bus wasn’t there.

As the minutes ticked by, my anxiety grew to panic. Looking at me, my son laughed a little and said, “this is why you qualify.” (I have had quite a bit of trouble understanding why I qualified for the special bus for handicapped people, and feeling as if I needed to defend my need to use it.)

Finally about 25 minutes after the bus was supposed to be there, my son started to believe it wouldn’t be coming too. “I am going to cry,” I told him. “Go ahead,” he replied. And I did. The tears started falling, and wouldn’t stop – and there I was in a very busy place, with people walking past me every few seconds.

The bus never showed. For this trip, I had arranged pick up at the place where my husband works (I was trying to get used to taking the bus on easier trips, so I wouldn’t be so anxious when I had to book for appointments and such…)

“Just take the van home,” my husband told me. “But I can’t! I am so anxious I can’t think. I can’t drive!” Can’t. I was in full meltdown/shutdown mode. So he waited for a coworker to get back, and then left work to drive me home himself. He is not supposed to leave work like that, but I needed him. Not only could I not function to drive home, but that would have meant having to go out again to pick him up in the evening (bad enough on a regular day, but on that particular day, he had to work late, wasn’t sure when he was finishing, and I was in a bad enough meltdown it wasn’t likely to let up in a matter of hours.)

“Try it and you will see that nothing bad will happen,” they tell me. But bad things do happen. I booked the bus. I did everything right. The bus didn’t show up, and I was stuck. Bad. Bad things do happen to me, and that is why I am so anxious all the time.

The tears kept flowing all that day. My head hurt so bad. The next morning I got up the courage to phone them and find out what happened. “Sorry, it was my fault” the person said, “I wrote down you wanted to be picked up at your house.”

I am not mad, but I do feel powerless, and I am very afraid that if I try again I will be trapped somewhere and have no way home. Bad things happen, they just do. And it isn’t just the bus that didn’t show – but the humiliation of having a public meltdown; of not being able to function to improve the situation; of the fact that despite saying it several times to make sure they got it right, they still didn’t understand what I was saying.

Of being just special needs enough to qualify for the bus – but not special needs enough to have supports in place to ensure these things don’t happen, or that someone is with me to help me deal with them when I can’t. I cried most of the next day, too.

So, so hard to live well in this world.
Easter 2016

 

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Autism: Drained of Energy

My head is pounding today, and once more I have no energy. I should have expected it, I guess – but as is usual for me, when I do have good days, I expect them to last. After 40 years, I probably should have learned this isn’t the case for me. Still, it is good to have hope.

For months my energy has been low, even for me. I hardly have the ability to do routine things, like cook and clean, let alone find motivation to add anything to my schedule.

In the last 6 days, I had decent energy for 4 of them. Sunday I was really tired, but I have come to the conclusion (after months of Sundays ending the same way) that church – even when I enjoy it, and feel good there – exhausts me. Every Sunday I am overwhelmed, and exhausted, and prone to meltdowns. I guess that is the cost of being around people.

For four days, though, I had energy. That might not seem like such a big deal for most people, but I keep a ‘mood chart’ which I send to my therapist once a month. This keeps track of how depressed, anxious, and irritated I am each day, along with how much sleep I got, which medications I took, and how much energy I had that day.

The energy section is on a scale of 1-4, with 4 being high. Some days I have taken to putting in 0, as I haven’t the energy to stand, let alone get anything done. Most months I will have several squares marked ‘1’, with more around ‘2’, and the occasional 3. I hardly ever reach 4 for energy; that might come if something exciting was planned, but isn’t even guaranteed for that. I am not a high energy person. Maybe one or two days a month would be marked ‘0’. I just couldn’t.

For the last three or four months however, the pattern looked more like a computer code or something (I don’t know that much about computers, but…) 1-0-0-1-0-1-0-0-0-1-0-1… for months. I was sick twice during that time. Really sick. Well… not hospital sick, but sick enough to think it could kill me. Both times the illness held bad for a couple of weeks, and left me drained after.

It is not unusual for me to have low energy, but this is ridiculous even for me.

And then in the last week, I have had 4 days where I marked ‘3’ on my chart. Four! And I can’t express how good those days felt. I cooked. I cleaned. I exercised. I practised my keyboard. I made a gardening scrapbook. I planted seeds in starter pots. I dreamed.

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How wonderful!

I wonder what it would be like to have energy like that most of the time. Some people do. I know some people do. But I never have. Perhaps if I had energy, I wouldn’t be so depressed all the time… I wonder: Am I depressed because I rarely have energy, or do I rarely have energy because I am depressed?

Even as a child, though, my energy was very low… but then I remember crying myself to sleep every night, too, from the age of about 7 or 8 – so it is possible I was depressed even then.

I don’t know. What I do know is that I had energy this week. I had it, and it felt so good, and I thought that this time I would be able to hold onto it.

Today, however, my head is pounding, and it took me most of the day just to gather the energy to pick up the keyboard sitting on the table right beside me to type this blog. That was all the effort I could manage for today. I wish… I wish I had energy.

 

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Autism: If Only

I watched a movie the other night.

It was an Adam Sandler movie, which was listed on Netflix. Typically, I don’t like Adam Sandler movies. I have nothing against him, it is just that comedy is not my thing. Mostly I don’t get it. I know it is supposed to be funny, but it just leaves me feeling nauseous. It isn’t him – it is comedy in general that I struggle with.

I do have a sense of humour. I do laugh when I find things funny. It is just… I don’t find most things funny that other people seem to. I have a different humour, I guess. Anyway, I tend to choose sad movies most of the time.

There were two movies of his that I liked though: One was ‘Bedtime Stories,’ and this one – “The Cobbler” was the other.

I enjoyed the movie very much, but… okay. My favourite movies I tend to like because I like the story, and the people, and the place, and they make me cry, and… basically I like everything about the movie. A lot of movies I like, however, it may be just one detail that I like about the show.

There are several shows I have liked because I liked the house it was shot in. Houses are a big one for me, and I love Victorians. In fact, I watch a lot of Paranormal shows because they are based in Victorian houses (apparently they are often thought to be haunted?!?) I love the houses, so while I may have some idea of what is going on in the movie, my focus is completely on the house.

“Did you like the movie?”

“Absolutely! I would love to live in that house!” (Forget the fact that it was haunted, or that someone was murdered there, or… I might not be able to sleep after, but… “What a great house!”)

A lot of things I watch are for ideas. Futuristic films, or Sci-Fi, or even post apocalyptic movies (those are some of my favourites!) Time travel, or fallout shelters, or sunflower farms… there is a lot of variety to what I watch because mostly I am in it for the details.

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That was the case with this movie. The first few times I saw it advertised on Netflix, I ignored it. Adam Sandler = comedy = not something I would like. But then I was going through the recently added section, and without seeing the picture, I read the description of the movie: (something like: A cobbler is able to become his clients by wearing their shoes.) Perfect!

So I put the movie on, and for the idea I really enjoyed it. Fourth generation cobbler – what a thought! Imagine a world where we were raised knowing, and being trained, for the exact occupation we would spend our lives doing.

Maybe most people like the excitement of choosing their own careers, picking their own direction, being responsible for their own future… I don’t know. For me, however, I found a lot of peace in that idea. How wonderful it might have been to know exactly who I was, and where I was expected to go, and what I was expected to do, from childhood.

Perhaps I wouldn’t have succeeded there, either – but I imagine I would have been far less anxious about where I was supposed to be going, had I known at 5 what was expected of me. Now I am 40, and I still don’t know what I am supposed to be doing… if only.

 

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Autism: Perfectly Imperfect

When I started, it was the first bit of energy I had felt in weeks, if not months. My anxiety had been high, and really, I had very little hope left for the project. The catalogues I had ordered sat collecting dust on my shelf, and I was wondering if the 30 year seeds my son got me for my birthday last fall would actually still grow if I left them that long.

It wasn’t the plan, but sometimes life… or in my case, a lack of energy, and an overabundance of anxiety, just gets in the way.

The rain was coming down. Not a lot, but enough that the day was dark. Typically, especially on dark days, my mood reflects the weather. It is hard to get motivated when there is no sun. Of course I know the sun is always shining, even if I can’t see it – I am more aware of this on sunny days when my mood is low, and my mind blocks the light streaming in on me, than I am on the darker days when I almost expect to struggle.

On this day, however, I had a drive that wasn’t dimmed by the weather, and I gave myself up to it.

For hours on this dark, rainy day, I happily sat on the floor in my living room surrounded by tape, and scissors, and catalogues, seeds and a coiled notebook (the type I buy in bulk every fall, and use often for my journals.)

For hours I cut and taped directions and pictures to match the 33 seed varieties that had come in the small silver package.

The lines I cut weren’t exactly straight, and the tape kept twisting and wrinkling, and as I carried out this activity I realized something that I had never quite understood about myself: my perfectionism and anxiety around making mistakes is there for the sake of other people, not myself.

These things that so frequently overwhelm me to the point where I won’t even start an activity for fear of failure are all about how I see others judging me, rather than about how I see myself. How frequently do I look at myself through my perception of how I think others see me, rather than through standards I set for myself?

I completed this scrapbook that I had made, and looked over the pages – which were kind of in alphabetical order, but not quite, as I missed some seeds, and had to put them in as I remembered them. The cuttings were somewhat crooked, the tape wrinkly, and all over the page. It looked not much better than a grade school project that a child did alone.

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Yet as I looked over this gardening scrapbook I had made, I was entirely satisfied with the result.

The difference in my opinion of how this turned out, and so much of the things I do, was that this didn’t have to be shown to other people. I was proud of it because I did it, and it reflected me perfectly. It wasn’t perfect, but it was ‘me,’ and though my back was really sore from sitting so long on the floor; and though I was surrounded in leftover scraps of paper, and a catalogue that was in pieces, I felt pretty much perfectly happy.

This project enlightened me to the fact that my perception of myself is not based on looking in a mirror, and seeing a failure – but rather looking into the mirror at a group of people standing behind me, and seeing ‘failure’ written in their eyes.

If I could let go of this fear of how other people are seeing me, I think perhaps I would be perfectly happy with most of my imperfections… and maybe it is there I would find the courage to try all of these activities I fear I could never do well enough to satisfy.

 

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