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"I am ever-changing and that is ok!" - my biggest (true) struggles

So, I've been thinking for about a week now on what to write about next. I guess all this has become so mainstream to me, I don't always think there are enough relevant topics for me to write about, related to the wheels. Which was, after all, my point on creating this platform (as explained here). So I kind of proved my own argument already - well that was quick!
Still, there is a lot that is debatable, I guess. I foud myself caught on thinking what are my biggest current struggles. And, suddenly, void... I couldn't think of nothing. This is why it took me so long to upload a new post.
But then it finally hit me. My biggest struggles, most of them at least, are unrelated to cerebral palsy itself. Many are an indirect consequence of how it made me see life, sure, but it seized to be so much about the physical handicap long ago. Lets break it into parts though, for the matter of being exact (I'm already predicitng I'll get carried away on some topics, but here we go anyways.
- Physically, the things I find the hardest are: transfering to and from the wheelchair at unplanned scenarios, going outside on the manual wheelchair on my own (I still can't go up and down curbs or ramps, luckily I think the active wheelchair coming soon will solve this), reaching high places (I measure 1,40m, so standing does not help much either,), obviously walking alone (once again hey panic-spasticity-falling love triangle, big thanks), flexing my knees and everything that may have to necessarily depend on that (this is due to a surgery that I had back in 2007, which consists in exchanging the flexor and extensor tendon, in order to be able to stretch the legs, which priorly was not possible due to spasticity). And I can't think of much else, right this instant.
Foto de Inês Marto.Ok, now that that's out of the way, we can get into the serious stuff. My biggest struggles, unfortunately I would add, are not physical(ly mine). And believe me, it is way easier to deal with those first ones. There are those which are related to them:
- It was a damn nightmare to find a flat without a single step (but hey I finally have a home in Lisbon!). Commuting and generally using public transportations on my own is still a pain in the ass (again the new wheelchair, once I get the hang of using it on all its splendor, lets hope so, can help this) mainly because if I am by myself, I have to use my electric scooter (it's an Invacare Colibri if you're interested). Which means having to wait for an adapted bus and also one that is empty enough that I can fit. And as for the subway, "Mind the gap" is as true as it can get, for a scooter. I'm not gonna get into the stations' elevators either, that would deserve a post of its own. Another thing related to all this is pombaline architecture. I love Lisbon and I wouldn't trade living here for anywhere else (no, not even NY), but those damn steps by the door everywhere... and did I mention I have a tendency for liking the hardest possible settings? Newsflash: I love the oldest neighbourhoods... and yeah I have tried riding a scooter in Alfama... well there are worse things...
But all this is not my point. Lets get raw. The struggles that impact me the most on a daily basis are:
- Depression and anxiety (read more about how it all started here).
- Panic attacks (sometimes caused by physical activities going wrong) which make me freeze and not be able to move anymore.
- Acceptance. Ok this is a big one, maybe the biggest. My struggle with it comes in many forms. Self-acceptance, for starters: the difficulty in getting it stuck in my head that I am enough, I push enough, I try enough. The challenge of constantly believing my own beliefs even when the world seems to collapse.
- Public image: this is related with the previous but not only. The "oh look, she's in a wheelchair" thing, it kills me, not gonna fake it. The expectations related to that, most of all. The embedded ideas that we are either completely useless or olympic atheletes on the making. The social pressure to stay active, stay in therapies, walk more, push further (yes I am aware I do it to myself too and it sucks). And being called lazy, most of all, as if what I do or don't do is not my option like everyone else (including being lazy if I want to!).
- Mind and body relation: this also of course connected with the rest. But me myself accepting my own body like it is, tummy rolls included, is not easy at all. Accepting my legs wont move the way I want them to is one of the hardest parts of not offending and blaming myself.
- Sexuality: this is a harsh topic. This definately deserves a post of its own very soon. But the general idea that we rollers don't have it really baffles me. And then my own fears of being sexually rejected because of all this shit... yeah.
- Gender expression: damn! Did I want to talk about this for ages! I define myself as bigender. So definately one of my biggest struggles is not to be ashamed of expressing my male side. Accepting body hair, for example, without being self-conscious about it myself because of what others will think. (This will also be explored deeper soon)
- Life-style: I'm a writer. Yes, the typical lonely one. I'm also a night owl, and generally keep brainstorming on my own ideas and projects till about 6am everyday. Absolutely hate mornings, avoid them at all costs. But the thing is, why the hell can't that be accepted, socially? Why do I sound crazy and utopic for living for my art and working under the moon, if that does it for me? In what does that differ from a business man that wakes up by the time I fall asleep to pursue his dream? Because so am I.
Foto de Inês Marto.And I think the bottomline of my struggles is precisely there. Accepting that I am just pursuing my dreams and that's ok. That I'm here to be happy and that's ok, and most of all that that's enough. And also people understanding that. But if I am not consistant myself, how will others be accepting, right? Wrong! Utterly wrong. No matter how broken and ambiguous I am, I know which parts of me are really me, and which ones are a reflection of all that shit above.
And that is all I wanted, after all. That people understood that I am not all neat paitings and flowers, but I don't want to be either. Even if I curse myself way too many times. I am learning to love my own darkness. I am learning to let my own (literal and not literal) scars free. One step at a time (pun intended) but I am getting there. That is my point: I am ambiguous and that's ok. I am unconsistent and that is ok. I have tummy rolls and that is ok. I am bigender and that is ok. I am gynesexual (person sexually attracted to femininity, not necessarily only in women - hey, another article to post asap!)and that is ok. I am a dreamer and that is ok. I am polyamorous and that is ok. I am still learning and that is ok. I am bigender and that is ok. I am ever-changing and that is ok. I am on a wheelchair and that is ok. I still struggle, and that is ok. Most of all, after all I am contradictory, guess what, that's ok! Main point: I am real. And someday in this world, that will be ok.

Bullying and suicide: raw and real

This has always been one of the topics I never quite know for sure how to address. But like I said, I want to keep things raw and natural here. Yes, there was bullying, mainly in school. Before using a wheelchair, since I've always been tiny, I used to go by in a baby stroller for long walks. Or else people would easily carry me, or I would take a few steps if it was a small path. I got my first wheelchair on fourth grade. An Invacare Action Junior I believe, back in 2004.
Before that I had never felt like "the kid in the wheelchair". I was not exactly integrated with other kids, but I didn't feel so much like an alien either. Back then I had a strong and outgoing personality. My tendency for performing arts had already made its way into my life and I liked organizing plays and shows with the other kids. But the truth is, as soon as they all started with jumping ropes and playing football, I remember spending more time looking at them and wishing to be able to do it, than actually finding ways to be part of it.

It didn't take long before I started being the last chosen one for every group activity that didn't include arts or writing (they'd see me as an advantage on those). But it was all still us being kids and not knowing how to fit me in. My (long lost) strong personality did not help much either.


By then I had started leaning more into reading, watching movies, listening to music and mainly having mentally expanding talks that lasted forever after dinner (which were insanely boring for most kids) including topics like "what are we alive for?". Predictably, that increased my already growing isolation, and I gradually stopped making an effort to be a kid doing kids stuff. So by the end of elementary I was already the weirdo. Still, being quite an imaginative girl, some kids liked getting me on make-believe playtime, which I quite enjoyed too.
I had a tendency for football, never liked watching it but liked the feeling of running around after a
ball, I remember trying to play in my walker, or on the floor on all fours (destroyed endless pairs of shoes by dragging them around like that, it was my main way of moving on my own). It worked, even though I was never an advantage for my team. As long as they'd let me play, it would work fine for me, I never aimed to be a pro anyways, but at least I had something to do with them.
The worst was obviously yet to come, though. Pre-pubescent teens have a natural way of becoming cruel, it seems. And as soon as me being a goalie on my knees stopped working to captivate them (God knows why), it all started to happen. I still wasn't the kid to remain quiet, and would outsmart most of what they said to me with comebacks. But it was pointless, I was the one wanting to conquer their company, not the opposite. It eventually it got to the point the teachers started to reprimend my behaviour, since I had become bitter to them as well, saying "you shouldn't be like that, it is you who needs them after all". And I believed that, for far too long.
As years rolled on they started being more subtle. It was not so much what they said anymore, there were no comebacks I could defend myself with. By then, it was all about looks of disgust, passive aggressive notes, not opening the doors to let me in (I could not do it myself), and despising any kind of closeness to me.
So I started getting quieter too. My mind was not for them anyways and that way I would not have to fade myself off just to fit in. And then adolescence kicked in. And it was a nightmare. If no one liked me before, and I had more friends being teachers than students (even though they still condemned me for "not making an effort to get along even though you need constant physical help"), then it became a jungle of "lets see who can make it worse". Which went from destroying my stuff to calling me a whore for wearing shorts, or leaving me alone when I had no walker or wheelchair near (there was a scheduled set of 2 people each day designated to be "responsible" for helping me, so I could at least survive. They hated it and so did I. As bad as it was, that got me feeling like a damn awful burden, to add to the rest)
I had never felt lonelier than when I was around 12 /13 years old. They started to despise me out loud. Luckily for me, the human brain tends to wipe out what is too painful, so it is mainly diffuse memories right now. I took silence as my weapon. Emotionally too. I became like a wall. Never talking unless strictly necessary, and avoiding eye contact as much as I could. Thought it would eventually stop, but it was too long for me being the ugly duckling to make it forgetable. The last drop though, I remember clearly, was the whole class setting up a fake messenger account as a boy named Daniel. I fell for it. Lonely as I was, I would happily throw myself all in for anyone who would bother to even say hi. "Daniel" started telling me he was in love with me. Again, I fell for it. As soon as I accepted to be his girlfriend "despite the physical distance", hell came lose and I was the easy unashamed dirty bitch.
Obliously depression found its way in. Strongly. I was never diagnosed. I hated psychologists. I hated motivational talks. I hated them telling me what I already knew (hello I always had excess thinking, not lack of it, was it that hard to see?). Either that or telling me I was just an attention seeker lacking life ambitions.
Suicide found its way in too. By the age of 14 I had attempted it 4 times, since there was just no point on being the outcast disgusting burden for everyone. Each time I failed my self hatred increased. It was all an unspoken topic at home, even though my parents obviously noticed, since I would only cry as soon as I locked my bedroom door. They did not neglet it, we talked about me and my life, but I guess they were always sure I was stronger than that, so we never quite grabbed the bull by the horns.
On 10th grade I found my crew. The outcasts. The queers and nerds united. We were only 4, but my goodness were we loud. Theater saved me. We started making our own projects. More than that, the deeply embedded idea of going to Lisbon gave me hope, and hope was the key to keep me going. I knew at least some minds would be bigger there (here!) and was I damn right!
I honestly feel I started to live 4 years ago, when I came to Lisbon. Self-acceptance has even already started to be a thing now! I was so damn right. My place had always been here, closer to the artits, the open minds, the free spirits, the crazy ones, the ones who take the leap... they are not that many either so far, but oh my are they great!
Let's not make this all rainbows (yes, LGBT+ pun intended, I am a damn winged unicorn - will also talk about that soon) and happy endings though. Bullying did not make me a better person. Not does depression. Nor does anxiety. Nor does all the suicidal shit. Nor the damn wheelchair. I told you I'm not a motivational coach. It almost fucking tore my wings to pieces. It eventually came to an end, though. And as for the ones who bullied me, I never heard not even about their shadows anymore. But I'm sure they heard about me, and will still hear for many years, sorry not sorry. I am not unstoppable, but you bet I am stubborn! Try harder next time.

(PS: I am open to questions about everything I post. If they justify it, I might soon do a Q&A)