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.
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.
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.
My name is Inês. I am currently 21 years old, living in Lisbon, Portugal.
Still studying - taking a degree in performing arts. I aim to be a playwright, a theater producer, maybe a lyricist, maybe a collumn writer too and god knows what more. Basically I want to work in the artistic and literary fields in however many ways I find I might have a certain drive for.
Breathing on wheels is my third blog. I currently hold two more platforms, both in Portuguese: My site Inês Marto where I post creative writing and poetry quite often (I have also recently published my first book Combustão, a selection of texts I published for the last 7 years) ; and Teatral-Mente Falando which is about theater, actors and plays being made currently in Portugal.
Maybe it wouldn't be a bad idea to explain the title. Here goes nothing then:
I was born on the 3rd of September, 1995. 3 months premature (26 weeks of gestation) , with a twin brother. Rumour has it we didn't even have fully formed lungs back then. Which ended up in me having cerebral palsy, spastic dyplegia to be more specific, as a life-long companion.
Further on I am sure there will be more details about this, but long story short it affects my moving ability. With surgeries here and there and many years of therapies, I can manage pretty well to do the most that I want to - but we will also go deeper into that soon.
The thing is I have some... let's say unusual views about life and handicaps and recoveries and all that jazz. I always said that I wouldn't do this. That I wouldn't speak up about the wheelchair. That I wouldn't even make space for it in my business card (yeah, it's a metaphor, I'm not that much of a serious person to have one of those - yet). It is precisely why I finally brought myself to do this - mhmm, I'm controverse as hell and if you plan on staying I'd advise you to get used to that - but no, this isn't going against that principle of mine - yes, I'll admit that I am confusing too - like I said, it is precisely why I did this.
The aim of Breathing on wheels is to show that there is so much more to us than actually merely breathing while on a wheelchair - hence I said on, not in, that's right - quoting Aaron Wheelz Fotheringham (if you dont't know who he is, do yourself a favour and meet one of the most epic people I have been lucky to find out about) “When someone says ‘You’re in a wheelchair,’ it’s like saying that I’m confined to my chair, I’m ‘on’ my wheelchair; I ride it like a skater ‘on’ a skateboard.” I aim to write freely in here. Maybe actually become a social person even - the sky is the limit, right? - time (and feedback) will tell. Wether it is related to wheelchair life or not. Maybe by doing so I can show how it is not such big of a deal, riding wheels. Sometimes. Sometimes it is a pain in the ass (quite literally too, I may add). But that is exactly my point. Sometimes the spotlight is on it. Other times you barely notice it. Some days I feel it as an extension (quite a rusty one, glad I'm gonna get a new one pretty soon) of myself, and other times there comes the "why me?" again, and I wonder how it would be if there were no wheels needed. I'm gonna be raw here. I'm gonna be a person here, not a motivational coach. Maybe to the extent that I might regret this someday, who knows. The first step has been taken. Hang on close by and I'm gonna open the window bit by bit to my twisted mind.