I’ve always been considered by people as ‘the funny one’, ‘the one telling stupid jokes’, ‘the one with (almost) no shame’, the one you felt comfortable with, cause for me there were no boundaries- wanna do stupid things? I am THE person for this job!
Well, with lots of sadness, I must now confirm – this person is gone. When did she disappear? I have no idea, but she is missing. And I really, truly miss her. But, honestly speaking, I feel there is no space for her in my head anymore. I started thinking – okay, the old me is gone- what happened? The easiest response would be – MS happened, disability happened, crappy legs and balance happened- that’s all. Well, it’s not, it’s just the top of this stupid, Titanic-drama-like iceberg, that’s fully uncovering itself (not only because of climate change).
Let’s analyse the facts – I have almost no friends and I cut off everyone who was close to me before. By ‘before’ I mean ‘before I started having troubles walking’. I don’t have any hobbies, nothing sparks my interest, and there is literally nothing I look forward to (apart from new episodes of ‘Ozark’ on Netflix, but hey, THIS SHOW IS OVER AS WELL). I am rather emotionless (I guess I should thank my antidepressants for this, kind of a good/bad thing actually), I am easily irritated and putting my ‘the cool and funny girl’ mask on once in a while really exhausts me. These are the facts.
Okay, so now I should start analysing the WHY. Why did I shut down so much? Why did I lock myself at home, not wanting to meet anyone (way too stressful) and being too scared of what people think of me if I fall (again) on the street? I admit it – I became obsessed with these fears, with these constant thoughts ‘you can’t do it anymore’, ‘you will not make it, and even if you will, is it worth the hustle and stress?’. Do you see what I am doing here? OH YES, I AM DISABLING MYSELF. More than my body does (can you believe that?!). I think I’ve tried everything to fight it, get over it. I started going to concerts and music festivals again but instead of truly enjoying these events I just couldn’t focus on anything else than thinking how much I hate participating in them as ‘the disabled person’ (most of the time as one of the very few disabled people present).
Disability really started uncovering all my hidden fears and insecurities, literally everything I worked so hard to fight and/or cover-up under my jokes and coolness. And now the iceberg is back and my Jack (and the door) are not here to help me. The fears became almost surreal- going out on my own, literally ANYWHERE, makes me sweat like a pig, and the stress brings back double vision, lack of balance, spasticity, and shakiness. So I just stopped going out, simple as that. If someone asked me 5 years ago (when I already had MS but felt really good and didn’t have any major problems walking) what my biggest fear was- I would be totally puzzled- flying? Spiders? Getting stuck in an elevator? Hard to choose. Now the answer is simple – walking. Full stop. I can’t stop comparing myself to others, but also to myself from 10 years ago (before MS). I can’t stop repeating in my head ‘please don’t fall, please don’t fall, PLEASE DON’T FALL’ every time I am surrounded by people. This is not MS that is eating me alive, taking all the best of me away- it’s my brain, which is also affected by MS, but mostly it is repeatedly being terrorised by my thoughts. I AM MY WORST ENEMY. That’s what MS taught me so far.
It’s disability pride month now and I know that I am not ready to celebrate it. Not yet. I thought that cool pink walking sticks, and inventing funny names for my walking aids would fix it. It didn’t. I have to fix it. And I hate it, I wish my mom could fix it for me, or a new dress or some nice make-up, a new job, a new diploma- you name it. Nope. It would be too easy, wouldn’t it? Seriously, why does everything have to be so f***ing hard?! I didn’t sign up for this and yet, I have to face my demons alone. I don’t know how, I don’t know when (oh, please, dear God, let it happen rather soon cause I can’t stand this crap anymore). This text doesn’t have any particular purpose, it’s not meant to cheer you up, nor freak you out. It’s just for you to know- if you ever feel trapped, overwhelmed, simply because it is just too much- remember, somewhere there, on the other end of the rainbow (aww) is me, Aleks, who is also struggling a lot at the moment. And that’s it.
Aleks. Ola. Kazia.Aleks 🇵🇱➡️🇧🇪➡️🇱🇺 #mswarriorqueen 👸🏻. #jamiexxmarryme #nosajthing4life but also #indiekid. DJing with #rekordbox. Proud @shiftdotms ambassador💪🏼