How does it feel, not being able to leave my own world? – Renata Jurkevythz

A while ago I wrote a piece about the feeling of living in my own world. It is a world that exists deep within me, and I am its sole inhabitant and ruler. It is very different from the outside world where this world feels like home to me. It feels natural. With this ascertained, I wanted to explain a different aspect of this world in how hard it is to simply leave it and enter the outer one, where everybody else is.

My world is very busy, often confusing and extremely deep, but this is home. This isn’t a place I flee to as people may think. It is indeed quite the opposite. This is my starting point, a place where I come from. Every morning I wake up in my world, and it is already quite busy with many things going on and numerous thoughts bombarding my mind. It is after some time I acknowledge the outside world around me and start waking up to it. Well, trying to. Sometimes it happens without much effort or thought, but other times it is so hard. Some days it feels like it is just not going to happen, so I try my best to survive and hope the next day will be better and the transition will happen seamlessly.

So how does it feel, not being able to leave my own world? Especially when I don’t have the option to stay there, as my life’s obligations and daily tasks are waiting for me in the outside world? My mind refuses to leave and my body gets so confused. I just move sluggishly from place to place trying the best I can to keep the pace when my body’s control room seems to be out of order. It is not a nice feeling. I traverse the day having a difficult time doing every single action I used to do automatically. Trying to change clothes; I stare at my wardrobe for a long time not realizing what exactly I was supposed to be doing there. After a while I choose my clothes from the “go to” pile, the ones I put on without thinking (perfect for this kind of days or when I’m just feeling lazy). I forget basic stuff like brushing my teeth. I try to talk to my husband and his words sound so distant and so slow that I just can’t react or respond in a coherent way.

It feels like I’m at the end of this long tunnel and everybody else is on the other side. I see part of what they are doing, hear part of what they are saying but I can’t really understand most of it. I try to interact with them from this distance place and scream the words I believe I should be saying. It is a real challenge and I get so frustrated because I want to be there for my loved ones, I don’t want to disappoint them. During these days, I go out of my way to avoid social contact or being in public. Some things are practically unavoidable, like picking my son up at kindergarten or answering the door for the postman. When I do I take a deep breath, try to remember the basic interactions I should be using (say hello, smile, nod, say goodbye) and pray nobody will try to engage in conversation and especially not ask me any questions.

I live my daily life in a pre-set routine, always having a specific order for things to happen in my day and when there is anything extra I plan a day before writing it on my chalkboard. This is a life saver for these days because it makes my daily routine automatic not needing to think about it and at least I get the essential done. The other extra things from my chalkboard just seem to fly off out the window though. These extra tasks are for the good days, and I am ok with that. This way I have found I am able to keep functioning even when I am off to my inner land.

I will be honest and say I do not feel my mind is broken or this feeling is a curse. It is really hard but I know these days are a way my mind has found to tell me I have been doing too much. It is just like when our body tells us we are overdoing things and we end up getting sick. The fact that I push my mind to its limits on a daily basis to be able to fit in a non-autistic world is nothing new. So, of course it will shut down and refuse to cooperate from time to time, especially in critical moments of my life when I’m really pushing it. Like a tired child that doesn’t want to walk anymore, my mind just stops and starts screaming “I don’t want to do this! Stop!”

Just like when you get sick and stay in bed all day and then feeling so much better the next day, giving in to my brain’s demands heals me. It is what I should be doing, actually. The moments I get to obey it and just stay home resting, writing, reading, gaming, I feel so energized. I recharge my batteries, feel peaceful. In these moments, I get the best ideas; I am my most creative self. I know I need to hear my mind’s demands and slow down. Being able to dive deep into my world and stay there for a while is amazing and fulfilling. It makes me better and stronger. The problem is not having to stay there, but having to go out. If I could stay every time I needed I would feel well enough to face the outside challenges and in result feel happier and more satisfied. Unfortunately life has its demands and they are always there whether we are ready for them or not. So, I act on doing my best to get through these difficult days, but never forgetting to seize my moments alone, inside myself, whenever I can.

About Renata Jurkevythz

I’m a 36 years old recently diagnosed Aspie. Married to a neurotypical for 15 years. Mother of three – a 10 year old Aspie girl, 4 year old classic autistic boy and a little baby boy. I found out about my neurology last year after my son was diagnosed and I started to dig deep into autism. Then my daughter’s diagnosis followed. We are a unique, happy bunch and try to make the best of what we have. We see different brains as just different, all with positives and negatives – there isn’t a wrong one! We are from Brazil but recently moved to Germany. My special interests are writing, learning languages, games and movies. I also love forests – they bring me peace. Things that make me instantly happy are the sound of singing birds (specially Seagulls) and children laughing.