Without Map

A friend of mine started a blog. And I have to admit that I am jealous. Of so many things really, but for the purpose of this post – I am jealous that she gets to write about normal life stuff. I am jealous because I have been thinking about blogs lately, and it seems to me that popular blogs are those that speak to the everyday experience that most people have. The normal ups and downs of motherhood, and of life in general. This is what people want to read about, yet this is the last thing that I can write about, so where does that leave me a writer?


Last week, I went to a pain clinic. I have waited over a year to get in, and the experience was truly horrifying. The OT was absent, the physiotherapist and psychologist were fine but couldn’t help me, however it was the doctor that brought me to uncontrollable sobs in the disabled toilets.

She didn’t get it. She was going off a script, to the point where I had to stop her and ask her not to assume she knows what I am thinking. She advised things that were dangerous, and was scared to advise things that are not. I felt like I had gone into some sort of 1950’s horror film. With 1950’s attitudes. And she didn’t seem to understand the difference between neuropathic pain and “gosh, I’ve just dislocated my hip” pain.

I haven’t been able to stop thinking about it, in part because I worry that my Aspergers is partly to blame. I hate blaming ASD for things, but – I seriously was out of my depth in communicating effectively with this doctor. Yeah, maybe she was a git too, but still, I’m a smart chicken – I should have been able to maneuver the situation into something more effective. Certainly, I can do so in my head after the fact, which is a pretty pointless skill to have.

So I haven’t been able to get this event out of my head, I haven’t been able to stop feeling guilty over not communicating properly, and I haven’t been able to stop feeling scared over the possible repercussions. I would like to blog about it, but I think – nobody wants to read this sort of stuff.

I read my friends blog, and I am so jealous. I am jealous that she writes about “normal” stuff. Not liking housework, and cute things her kids have done or said. I spent most of my day sleeping, and when I wasn’t sleeping, I was in pain. I didn’t get to really see my kids today, despite none of us leaving the house for any length of time.

I don’t get to write about normal everyday stuff, because I don’t get to live normal everyday stuff. And what I do live is depressing. It’s not even like I have some inspiring story from which one could draw inspiration. All in all, my existence is pretty pathetic, as much as I would like to think otherwise.

Perhaps I am still trying to find myself. Find my place in the world. Where I fit in. Should I talk about the bad stuff, advocate, and try to change the world, or should I back off and just quietly live my own life the best I can?

It’s not like my current efforts at advocacy have done any good. I’m completely inconsequential. I know that. I get it.

But… I can’t help but feel that if I gave it up completely, then I would always feel like something was missing in my life.

Everyone around me seems to have it all so together. Perhaps they have struggles, perhaps they have pain, but they still seem to have it together. They seem to have a map, of some sort. It may be a good map, or it may be some kind of kids pirate map drawing that is barely legible, but they have a map.

While I sit here, and feel completely lost. I am without map.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

Tagged with:
Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health, Personal
4 comments on “Without Map
  1. Hi Linda. I am sorry to hear you are feeling this way. I will send you loving vibes in my mediation this afternoon.

    In my experience, the only way I have been able to change the world is to change my perspective. My life has gotten better for it. And I have attracted opportunities I am truly grateful for. Sometimes for me it starts with a simple gratitude practice of writing down what I am grateful for. And sometimes the only things on that list are flush toilets and running water. But it works for me.

    Much love to you,

    • Thanks Trish 🙂

      I’m grateful for all manner of things 🙂 My kids, my husband, living in a first world country, having first world problems, and yes, running water :). Still, I feel like while I have a place in the world, that I haven’t found it yet. And I’m not getting any younger lol… I don’t seem to quite “fit” anywhere… My optimism comes in with “yet”. I don’t fit anywhere “yet”. Perhaps too, it’s just leftover emotion from last week, which threw me quite a bit. And jealousy lol. I’m not proud of being jealous, but I’m man enough to admit that I am.

      Thank you for replying 🙂 I like what you said about changing perspective… The Aspie in me does look at things literally – that is just how my mind works, but I will think about that, and see if I can come up with a better perspective :).

      Much love to you too!


  2. Oh my friend. 😦 I guess a lot of what you’re seeing is on the surface. The real purpose for the change in direction in my life is to pull me out of the depression I’ve been in for months. Still I understand that it’s not the same and I can feel your frustration at being ‘trapped’ (for lack of a better word) by your limits. Of trying to make life better and easier for yourself and your family and having doctors disregard that you are an individual. It’s hard. FWIW, I don’t think your lack of being able to convey to the doctor is an Aspie thing. I’m just as shit at that. In my head I’m kind of like, “THIS is what I mean.” but I think the social conditioning is too strong and I feel impolite or disrespectful for pushing to get answers. Much love to you. xx

  3. Oh sweetie 😦 (((hugs))). Will PM you on FB…

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Pissed off since 1995. Mad as a hatter since way before that.

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