Christmas Sucks (Part 1)

On Christmas Eve J.K. Rowling tweeted this lovely message, which really got to me, as I very much identify with much of what she writes.

I’ve had so many lovely messages wishing me a merry Christmas. Thank you!
I’ve also heard from people who are going through very tough times. These always seem worse at Christmas. At this time of year, we’re bombarded with images of perfect lives, which bear as little relation to reality as tinsel does to gold. If you’re lucky enough to be with the people you love, warm and safe, with enough to eat, I’m sure you feel as blessed as I do. But if your life is currently full of difficulties; if you aren’t where you want to be, either literally or figuratively, remember that extraordinary transformations are possible. Everything changes. Nothing is forever.

Thinking back to my worst Christmas, I found it hard to believe that my unhappiness would pass. I was truly afraid of the future. You never know what the future holds. Astonishing reversals of fortune happen every minute. So if you’re sad, or lonely, or bereaved, or ill, separated from your loved ones or in any other way suffering this Christmas, I send you love and wish you luck and better times. Millions of us have been where you are now. Remember, Christmas Day is, in the end, just a day. It isn’t a test or a scorecard of you or your life, so be kind to yourself

Merry Christmas!

I was in the process of finishing a blog post about this very thing, when Jo tweeted what I was struggling to put into words. In fact, she managed to write about thoughts and feelings that were lingering somewhere at the back of my head, still very much in such a form that I was mostly unaware of them.

I tend to phrase it as ‘I hate Christmas’, because that’s the easiest way to put it. Quickest too. It leads to very few questions although it does seem to increase the number of disapproving looks. Setting aside terminology, Christmas has been becoming more difficult for me over time. For lots of reasons really.

Apart from the ones Jo sums up, I find the whole concept of Christmas very hard to handle as an autistic person. It is disruptive beyond belief and subsequently not only affects my peace of mind, but also my physical health. I love my 7 foot Christmas tree and I love my decorations, each of them handmade by me. And yet…that tree has continuously been living in my basement for several years, as I am unable to handle it being in my living room or anywhere else in the house. It being upstairs instead of downstairs sends me in complete sensory overload. It literally makes me ill. Furniture needs to be shifted around to make room for it, it changes my whole living room and on top of all that, it affects the light in my home. As a visually impaired person I need proper lighting, and having the tree up here strongly influences the light. It’s more than I can bear, unfortunately. So this year – again – my beloved tree and decorations remained in the basement. I’ll try again in 2017.

Just another day in the life of an Aspie

I have been sleeping extremely poorly, but last night I only woke up once. However, even this relatively moderate sleep disruption led me to having to mute my alarm clock three times before I managed to will myself out of my semi comatose state. I get like that when I don’t get enough sleep and my sleep is disrupted late in the night.

However, sleeping in is not an option. Believe me, I have tried. It completely messes with my metabolism, making me only feel worse, so it’s a big no no. Getting up I felt like I had been run over by a truck. I was experiencing a lot of pain all over my body, though my back seemed most affected. I decided to still go ahead to run some errands, which included a walk of well over 5K. Experience has taught me that this would not make me feel worse and sometimes the fresh air will actually improve matters.

Things were better for a while. Upon returning home I had taken painkillers for my back (which by now was killing me). I had also changed into shorts, but some time later I got really cold. Of course it was ‘only’ 26°C. Regulating body temperature is a big problem for me, both cold and heat. Back into socks and trousers it was. I could even have done with a vest. At 26°C!

Later in the afternoon I got a really bad headache. I get them from lack of sleep as well as from sensory overload. More painkillers. Then my eyes started acting up, the ‘perks’ of having a blinding eye disease. Working on the computer became virtually impossible, so I moved to my comfy chair. I tried to read a bit, but unfortunately my body then decided to ache all over so badly that I could no longer sit up straight. Fighting that pain takes a lot of energy, making staying awake quite impossible. I had no other option than to go lie on my bed for some time. I hate doing that during the day, as it usually does more bad than good. In between all this my Irritable Bowel Syndrome (most people with autism suffer from bowel problems) had been acting up and definitely the lactose intolerance as well. Aching insides didn’t help things.

Many autistic people do not get a signal from their body when they’re hungry or thirsty. My body only gives out those signals once in a while, so I have to live by the clock. I manage to do so with my meals quite nicely, but I regularly mess up my fluid intake. So I had to get up again, to cook dinner. No, I wasn’t feeling hungry, but I rarely do. Listening to one’s body might be something a person without autism is able to do, but I certainly am not. If my body speaks at all (and I doubt it does), it does so in a language my head does not understand.

Now, mid evening, I’m sitting here wondering what else my body has planned for today. My willpower and stubbornness dragged me back to the computer. If it wasn’t for them I’d never get anything done.

What you cannot see

A little over ten years ago I started to experience vision problems. I didn’t think much of it, as both my contact lenses and my glasses were long overdue for renewal. I thought I just needed to replace them with a new prescription. Apart from the blurry vision in general I saw a lot of spots, but I thought those were due to dirty lenses and/or dirty glasses. And when I checked them they were dirty, so nothing to alarm me. I had a significant problem with light coming from a particular angle on the left hand side, I could hardly see a thing. However, when the light was (re)moved, my sight improved, so obviously the problem was with the light and not with the eyes, right?

Even now I don’t feel I was continuously reasoning away problems I knew were there. I genuinely did not know there was an actual problem with my eyes. I moved house, the light in my new living room came from the right hand side, but my eye problems remained. At around the same time I got both new contact lenses and new glasses and yet the eye problems remained. After that it did not take me long to go see my GP about my eyes. Like I said, I never wanted to avoid a problem, I just didn’t know there was an eye problem.

After seeing the GP things sped up, for even he could see (without any fancy equipment) that at least one of my retinas was detached. I got an emergency referral for a specialist and the rollercoaster ride commenced. Even with all the fancy equipment it took the specialists at the Eye Hospital considerable time to get me a diagnosis beyond the preliminary one (i.e. detached retina). The eventual verdict – and I’ll give you the simplified version – was that my eyes are dying off. There is nothing that can be done about that other than monitoring the decay and on top of that the specialists have concluded that there’s something else wrong with my eyes on top of ‘just’ this, although they still haven’t determined what exactly.

Long story short: my vision is deteriorating. Fast. I have not been able to read with my left eye for years and my right eye isn’t to write home about either. I have significant blind spots in my field of view and just for the ‘fun’ of it my brain will attach the parts that I do see, as if nothing is missing. I have banged into something that was simply missing from my field of view numerous times. The quality of my vision is unpredictable as I will see better one day than the next. Without warning the eyes will decide they’ve had enough and stop functioning for various periods of time. Never a warning and never clarity about how long such an episode will last this time around. And the ‘best’ part of it all (not!) is that of course the dying off of my eyes is a far from pain free process.

And so it began…

I’ve never fitted in. Not really anyway. My whole life I have felt like the odd one out. Even in kindergarten I knew the other kids were different, or rather: I was different. Not that I thought that they were all the same, I certainly don’t remember it that way, but if according to George Orwell some are more equal than others, I was definitely more different than others.

It’s hard to completely describe what that realisation does to a child. I know I never felt good enough, partly because of me being different and partly because I was made to feel not good enough. Such experiences have a lasting impact.

On my continued search for the reason why I never fitted in anywhere I did a lot of reading, because that is what I do, that is my safety net. With zero humans to turn to, books were all I had. Books were safe, books were honest, books were there for me.

I discarded lots of possible why’s during my quest. I won’t go over them all, I probably wouldn’t be able to remember them all anyway. One that definitely stood out for me was ‘gifted’, in the sense of intellectual giftedness. I found myself very much identifying with the stories of those interviewed in some books I read on the topic.

I decided to take a Mensa test, which to me really was the only way I knew to have my IQ tested. The actual Mensa membership was never something I was seeking, all I wanted to know was why I was so different, where my utter inability to connect with people stemmed from. Taking the Mensa test was just a means to an end.

My IQ results would definitely had let me ‘into’ Mensa, had that ever been something I wanted to do. For a while I truly believed that I had my answer, and I can’t say I took it very well when it started to dawn on me that I had not, after all, finished my search for answers.

It eventually took many more years and a diagnosis of a close relative for me to return to a previously discarded possibility. Discarded, not because I was not open to the idea, but simply because the then current description of my eventual diagnosis did not fit me at all. The ridiculous assumptions that came with said diagnosis like ‘no feelings’ and ‘no emotions’ cost me many extra years of searching.

I was eventually very fortunate to end up on the right trail at the same time when several new books were published. Books about women with autism, women with Asperger’s. Books written by people that knew how unjust those assumptions that led me to previously discard autism as the reason that made me different really were. Books with stories that ‘clicked’.

And thus, my journey as a woman diagnosed with Asperger’s began. These blog posts are my musings about past, present and future.