No Help Without Talk

A couple of weeks ago I was going to the neurological clinic. My child had a cold and had to stay home from school, and my partner needed to go with me and couldn’t stay home with him. Luckily, a relative could come and stay home with our kid. I was very dizzy and it was a challenge to walk with crutches and I stayed in bed as much as possible before leaving. At one point I had to go to the livingroom to pick up some papers that I needed to bring and as I entered, the relative started showing me her hair and talking about that she had a ponytail, just like me. This surprised me because my partner had told her that I was in no shape to make smalltalk. Fifteen minutes later I was on my way from the bathroom back to bed to rest before leaving, and the relative approached me and started talking about another relative. I was really close to fainting and could hardly speak but I managed to finally push out some words, explaining that I’m about to faint. When we finally arrived at the clinic, I was already exhausted from having to interact with the relative and the drivers (explanation further down) and the hour of talking I had to do there was excruciating.

The week after when I was going back to the clinic, my kid was luckily in school, meaning I got a more quiet morning. Since I can’t sit up straight for very long, I was picked up by drivers who have a car where I can lie down. They rang the door bell, my partner opened and they started asking how I was doing. I could hardly speak, because I was putting on my jacket and shoes, but I murmured some kind of answer. As we went down with the elevator, they kept trying to talk to me, and my partner answered. When we came to the clinic I was exhausted from all the talking around me, again. On our way home, the drivers (new ones) made smalltalk, I didn’t answer but they kept on talking anyway. One of them asked what was wrong with me and I got upset, because it’s way too complicated to explain in one sentence and I honestly don’t think I should have to explain this to every person I meet. I knew the driver was probably just trying to be friendly and polite but I felt bad from once again being expected to verbally explain something complicated and somehow personal to a stranger.

Because, what I just described weren’t exceptions. Healthcare professionals, service providers of different kinds (like drivers and people from the social insurance agency), family members and so on – most people don’t believe me when I explain that verbal communication is very hard to me. They demand polite smalltalk as well as detailed accounts of my diseases and disabilities. Somehow people seem to think that helping me with something automatically entitles them to personal information about me as well as any kind of verbal communication. This makes me depend on my partner, without him working as a shield, I wouldn’t be able to access the healthcare and service I get at the moment.

(Notice the words here: demand and entitle. People act like verbal communication is something I owe them, meaning that I get to taste their anger and belittling when my ability to talk and listen doesn’t meet their demands.)

What really bothers me about this is that I know that other people with similar disabilities go through the same thing. I know many people who live in the same country as I do who have the same problems with healthcare professionals and staff from service providers, and people from many other countries report the same problems. I need people around us to wake up and see how ableist a lot of healthcare and social services are. Healthcare and help excludes people who need it, and being disabled means it’s harder to get the help that people without disabilities think we get too easily.

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Executive Dysfunction and Panicking from Demands

Since a couple of weeks back, I’m off my ADHD meds. It’s not because they didn’t work, but because of side effects and a complicating condition. Before I quit taking them I had started to think that maybe they don’t do any good, maybe I don’t even have ADHD. Well, let me put it like this: They did work. I do have a problem with executive dysfunction. I really hope that I’ll be able to start taking them again but I don’t know how things are going to turn out or how many months it will take before I can start again, if I ever can. In the meantime, I need to cope with executive dysfunction more actively than I’m used to and therefore I’ll start to unpack what executive dysfunction means to me.

One of the things that hit me really hard when I went off my meds is how overwhelmed I get from any kind of demand. It’s not only that it’s way harder to come to a point of focus and start working on a task, the problem is just as much how it feels before I’ve reached that point. Before I actually can start to do something, I need to organize my messy thoughts and my lack of context. Considering the fact that I’m literally thinking of around 8-12 different things at the same time, this is a big task. I forget what I’m thinking about and I have to work myself up to try to grasp it again. When I finally reach the point of knowing what I’m about to do, why, how important it is and how I’m going to do it, I’m exhausted. Since there’s no spoons left to actually do the task, I tend to panic.

I have strategies and tools to make this easier, like task lists that are organized to give me information about priority, why and how I should do different tasks. It helps a lot and I’m very happy that I’ve spent so much time on improving this way of working. It helps me further to acknowledge that this orientating process doesn’t happen automatically to me, that I need to take this into account when I try to balance activity and recovery. However, it doesn’t make the executive dysfunction go away. Also, it doesn’t heal the wounds from all the times people have accused me of being unmotivated or avoiding demands. Needing to spend so much energy on just orientating myself enough to know what to do and how to do it is a big source of fatigue that most people who don’t have the same experience won’t understand, and that’s very painful.

No matter if I can start my ADHD meds again or not, I need to cope with the grief of being so misunderstood for thirty years, because now I’m reminded of it every day, several times a day. I still don’t know how, but I guess I’ll figure that out.

Access to safe abortions means children can be born to parents who want to be parents

Content: This post talks about abortions and reproductive health in general and describes the circumstances of my abortion. There’s no mentioning of medical details.

 

 

I’ve had an abortion. It’s almost ten years ago now, but considering the political situation I want to write about it. I don’t live in the US but the right to safe abortions is actually threatened where I live too, although not as blatantly (yet).

When I had my abortion, I got pregnant by accident. I’m not going to get into specific details more than that it’s very unlikely for a pregnancy to occur the way it did for me. I discovered that I was pregnant very early, because even though I didn’t think it could have happened I felt so bad and my body was in such a chaos that I decided to buy a test anyway. I was shocked when it turned out to be positive, really chocked, but I knew that I wasn’t ready to become a parent. Two weeks later I had the abortion, and even though it was sad, it wasn’t traumatic. There were things going on in my life that were sad and very difficult around that time, but having the abortion was a decision I was comfortable with.

I was an adult when this happened. I had a a job with a salary that could have been enough to support a child with, and I had a stable living situation. The pregnancy happened through consensual sex. Still, I was simply not ready to be a parent. So I had the abortion, and I have never regretted it.

My abortion was sad but not traumatic, and one of the reasons for that is that I wasn’t judged for having it. The nurse and other healthcare professionals didn’t judge me for it, the friends I told about it didn’t judge me. I didn’t have do give any kind of explanation or justify why I made the decision I made, because everybody agreed on that it was my right to decide. This is what reproductive health is about – respecting every individual’s right to decide what to do with their body. Access to safe, affordable abortions means that children can be born to parents who want to be parents. That is a beautiful thing.

Falling

Content Warning: This post deals with internalized ableism.

 

My bed is soft
my bedroom dark
my weighted duvet hugging me
and I – I am falling

The biggest, deepest, darkest secret
planted deep
its essence tangled in my roots
permeating everything
invading me

There is no me
without the false becoming the truth
the faulty becoming the real
the obvious demanding unraveling

I Miss You

Dear partner,

I miss you. I know you’re just two rooms away, and my legs are strong enough to carry me to you today, but I won’t come to you. You work too hard taking care of our child, of me, of our home, and on top of that you try to manage the work that actually brings us money. The time you have to yourself is scarce, way too scarce compared to what you need, and I don’t want to take those precious minutes away from you. You’re not autistic, but I know that we are very much alike in our need for time of our own.

I miss talking about something that isn’t a practical problem that needs to be solved, and I miss being physically close without all the guilt and stress it seems to always be accompanied with nowadays. I miss spending time together because we like it, like we used to. Right now, there’s no room in our life for any of that, and that makes me sad.

I love you, and therefore I accept that life is like this right now. I miss you but I don’t ever want to interfere with your recovery time unless it’s absolutely necessary, so I want come to you tonight. I love you, and therefore I’ll leave you alone.