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.
There I was. A tiny bundle of energy, they say. Always wanting to check out each and everyone and everything that entered the room where I was, laying down in an incubator, with a headband and probably a pink pair of handmade booties knitted by my grandma.
It was all due to my rush of being born, it seems. Mom says she had made chocolate mousse that night, for dinner, when suddenly her waters broke. I wonder if it could have been my sweet tooth already manifesting. Either that or my anxiety was born with me.
The story goes like this: mom was 38 years old, already a risk pregnancy back in 1995, it was then or never. They definately didn't think I would be ready for peek-a-boo yet. Mom rushed to the hospital. Dad was teaching a good amount of miles away from home. Mom says she destroyed a pillow in pain, grinding it between her teeth. Next thing she knows is my head was already visible. On the 26th week of pregnancy. Our skin was so frail, you could see through the tips of our fingers, they say. My brother on the other hand, not being anxious at all (some things never change) had to be pulled out in what I can imagine must have looked and felt like a scene from The Shinning.
There are not that many details from back then. I guess the tendecy and the advice must have been to expect the worse. Heart and lungs were not fully formed. All you could see were basically tubes and monitors beeping. And four tiny hands, two pairs of shiny curious eyes determined to discover the world around them.
There are no pictures from our first week. And to be quite honest with you. even for me, the first ones that were took are too shocking even for me to publish. Mom could only hold us for the first time on the second day. Dad says he was afraid of breaking us in half for far too long. There were no diapers for our ridiculously tiny size. Not even the ones made for premature babies. Mom says they would just get a cotton ball on our bottoms and it would last. An also interesting detail: our bath tub was one of those school cafeteria inox bowls, everything else was too big (perhaps we could have been a good inspiration for a Tim Burton movie). There started even being jokes that we would fit in a match box. From what I know, we gave nightmares to many people, and I am sure many sleepless nights to our parents.
We spent a month in the hospital, with regular cardio-respiratory arrests. One of those caused cerebral palsy to me. It was far from being diagnosed yet though. The following years, I may add, were also in an out of many many hospitals, having an immune system made of paper. I became familar with oxygen masks before I could even say my first word (which was pretty damn early - by 9 months - and it was probably "no", which ironically I find hard to say now most of the times).
As soon as we were home from another stay at the hospital, we would get sick again, and if one of us were cured, it would spread to the other before we could breathe in relief.
Mom is a kindergaten educator. Back then she had worked at a physical rehab center for quite a while. Long enough to be able to tell when something of that matter was wrong. And the truth is I never seemed to be able to start crawling, or even holding my head up easily, also my limbs would not move well.
Doctors always said it was just slow development due to being premature, and that I eventually would grow out of it and develop fine. Considering I had almost no reflexes, though, sooner or later, they stopped telling my mother she was being paranoic about it, and gave me spastic diplegia, cerebral palsy, as a diagnose. Our world had crumbled. That tiny peanut who wasn't even supposed to make it, had recieved a letter of war, to fight for each literal step in her life for the rest of her days.
From what I can remember, though, I accepted it with no fuss, since I didn't even know what it was like to live without it anyways (from there to actually coming to terms with it goes a whole lot of difference, but true acceptation of a chronic "disability" is another big chapter, pretty much still unclosed, that I will write about soon).
Next thing I know is I already did physiotherapy. At about 6 months old. And I didn't stop for ages, though I must add I was lucky enough for it to affect only motor skills. But even though it is still hard to believe for many people who know me, I certainly was, for the first years of my existace, one of the kids you see drooling and not being able to control fine motor skills to even hold a pencil right (I will soon write about my most dangerous experience ever that completely changed my life in that sense, for the curious ones, it is called selective dorsal rhyzotomy, I did at the age of 6).
I don't remember much from that early start, obviously. But one thing I am sure: once upon a time that tiny bundle was born already stubborn enough to defy imposed limits. And here she remains.
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.
Recentemente fui contactada pela Vanda Leite, autora do blogue A Cor do Meu Verniz, a propósito de um passatempo, com parceria da Chiado Editora, para que os leitores se habilitassem a ganhar um exemplar do meu livro Combustão.Na sequência do contacto, surgiu a entrevista, que pode ser lida neste link. Através da qual me dou um pouco mais a conhecer.Como disse (para quem me acompanha nas redes sociais) não acaba aqui. Proporcionou-se uma colaboração. Começarei muito em breve a parceria com a Vanda. Não quisemos que fosse uma simples cedência de textos. Portanto, passar-se-á assim: a cada data de publicação, a Vanda escolherá uma palavra, sobre a qual eu devo ceder um texto (dos que podem encontrar aqui).Os mais atentos já devem conseguir adivinhar com qual começa - a primeira palavra escolhida é "celebração".A partir de agora, vemo-nos também então, n' A Cor do Meu Verniz
Escondia uma espiral de asfixias com a desculpa de ler um livro dos tantos esquecidos na prateleira de não ler. Mas não deixas. Assaltas-me as horas mortas e cortas-me as ondas salgadas do pensar. Não pedes licença, conheces-me a sede. E ficas de mansinho comigo deitada, serena, no bunker do meu desacreditar, onde não deixo entrar ninguém, leve como até hoje apenas tu. Assustadoramente alguém.Pegas-me pelas pontas dos dedos e fazes com que me dispa de repressões. Mergulhamos na minha incredibilidade, castelo de cartas, menos mal por estares comigo. Mas só porque me ensinas a parar de olhar mil vezes antes de me atirar. Não se voa todos os dias. És uma sorte.Procurei anos a fio olhos onde acender simbioses e alienar-me na companhia muda de quem está finalmente nu. Encontrei-te. Penso em fugir antes que doa. Anda - peço-te na voz sumida de quem rasga cimento com flores selvagens - Faz-me acreditar. Mostra que as minhas utopias lilases de amar por bem podem ser loucas a par então.Anda - cala-se a boca a medo, olho-te trémula - na esperança encontrada que me leias o presente pergunto de respiração cortada se é assim de verdade, se me posso dar sem rédeas, se não há mesmo escalas no querer nutrir-te, porque não se mede o que aconchega o peito, e o perder-nos no tempo pode simplesmente saber bem.Anda - sussurro com olhos tristes - Desfaz os nós que me fizeram. Põe a tua mão na minha e não a deixes. Diz-me que não há purgatório em ser caleidoscópio de afectos por condição.Anda. Senta-te ao meu lado. Deixa-me olhar-te nos olhos até não sentir choques na nuca. Abraça-me devagar. Deita a cabeça no meu ombro. Cai em mim. Não te recomponhas. Atira janela fora o tempo e a postura. Fica nos meus braços. Ouve-me o coração, porque sim, sem ser preciso motivo.Anda. Faz comigo desenhos de fumo suspenso na ebulição de ser humano. Rasga-me as consequências de ser na vida como nos versos. Despe-me dos medos com os dedos delicados. Diz devagarinho que amar não tem fundo nem contornos. Anda. Deixa o mundo e habita-me. Beijemos as cicatrizes mutuamente, sem ter nome nem morada. Apenas. Só. Modo de vida por suficiência de justificação. Recíprocas. Porque nos elevamos, livres de julgamento, e essa ode à transposição do ser é quanto baste para nos sentarmos à mesma mesa e bebermos do mesmo copo, sem que telhados de vidro se façam cair.Anda. Liberaliza-me. Porque podemos, afinal?
Fim de tarde. A vista parada de uma cidade agitada como fotografia do tempo desmedido por uma janela que sempre arranjou maneira de se fazer nova e desconhecida. Um cinzeiro cheio de beatas velhas que não fui eu que fumei e os joelhos nus abraçados contra o peito numa cadeira de plástico onde se cheira a maresia. Os cabelos cheios de sol e o peito de sonhos por cumprir. Uma balada no gira-discos que queria ter e, só faz de conta, papel de carta no colo e uma caneta de tinta onde te escrever poemas enquanto o dia proclama que já se cansou de o ser e a lua sobe. Uma garrafa de whisky no chão de quem a boca não me deixa ganhar saudades. Pelos pensamentos os beijos que nunca demos. E o tempo parado assim. Foi como descobri que estar viva era isso. Sentir casa nesta coisa nenhuma que havia de ser sempre e só.
Em cima da mesa um externo aberto esculpido em carvão, as costelas dilaceradas por impressões digitais. Tórax de vinil escorregadio. Quebradiço. Um candeeiro de tecto, luz branca. Demasiado branca. Uma cascata fluorescente a fazer ver o artefacto. Em volta nada mais. Pó levita dos limites da penumbra. Enxaqueca.Das pontas irregulares partidas dos ossos cai cinza como cigarros a deixarem-se morrer no cinzeiro da própria existência.Uma gaiola preta a desfazer-se ao toque. Cai cinza. Fios de veludo cor de vinho adornam a ossada como franjas de um xaile íntimo ou cortinas entre o xilofone de resto de esqueleto.Lá de dentro saem borboletas azuis de vidro polido brilhante, reflectem o candeeiro. Enxaqueca. Não sabem bem se partiram as grades do corpo-ébano e se fizeram vida, ou se congelaram nos fotogramas maleáveis flácidos como folhas de raio-x. Talvez algo entre as duas coisas. Cai cinza.Pestanas abandonadas no chão. Pingos de pele sobre o tapete manchado. Pegadas descalças marcam o azulejo em volta. Uma autópsia em vida. Enxaqueca. Uma cascata de cabelo às ondas de quem se deixou morrer sem se matar.A última instância de arte na vida: a pintura psíquica detalhista das borboletas que hão-de um dia rasgar o peito, partir os maxilares, queimar as veias dos pulsos que já existiram tudo o que tinham para existir. A imagem a detalhe. O corpo como escultura. A memória como fotografias penduradas tortas em paredes abandonadas ao caruncho da solidão. O pré-óbito como derradeiro catalisador da essência. Como fascínio eterno. Como xamã da perpétua inquietação. O mergulho mortis como processo mecânico de auto-catalogação de fantasmas. Enxaqueca. Cai cinza.
Linhas de sombra na parede fazem-se corpo inteiro e madrugada. Respiro. Nas janelas de uma viagem qualquer perde-se estrada na infusão de memórias que bebo sempre sem querer. O céu pesa-te na boca e a vida no pescoço. Queima-se o passado num fogo índigo de quase. Respiro. O fumo deixa-se beijar pela rua e desenha ao ar uma denúncia do teu corpo dançarino e duas cinturas de encaixes-sonhos embriagadas de noite. Respiro. Sobe-te o mar à tona dos olhos presos nos meus. Traz nas ondas o amor que não quiseste. Sustenho a respiração. Morrem na praia deitados os cacos de loiça ou cristal que tinha ligado eu mais que tu a fio de talha dourada - esculturas partidas são as mais bonitas, aprendi do Japão e fiz questão de to viver. Arrastam-se pela areia feitos peregrinos náufragos com pele salitre. Deixam por rastilhos-desenhos uns rasgos na areia ainda molhada. Escrevem na língua dos Deuses o que puxei do âmago em lágrimas para te dizer e desacreditaste. Sustenho a respiração. Ao fundo a falésia onde se matou um poeta afogado em desesperos. E pelo chão entre os cacos as promessas que fizeste de nunca ires embora. Sustenho a respiração. Enterra-se latente uma história sem precisar de caixão. O amor nu deixa-se riscar de areia e sucumbe ao que não se deixou acontecer. Desfalece. Sustenho a respiração. Ficam no cais os desenhos na praia deserta de areias lisas, quebradas pelos versos que hão-de ser sempre teus. Pesa-te o desapego no peito. Pesa-te a morfina no hoje. Hoje morreu Vénus. Sustenho a respiração. O barco vai de saída.
Puxei da minha pele em escamas as entranhas, desfiz-me de mim. Deitei-as sobre a brancura virgem do lençol como ornamentos oferecidos aos Deuses no altar do teu cadáver.
Tatuei na tua pele o meu sangue posto ao relento a tocar as pontas finas dos teus dedos onde amarrei a ínfima jangada condenada a um naufrágio.
Beijei-te os lábios frios roxos sem saber se a metafórica morte da fogueira que me acendeste no tempo longe prenunciava ser a última vez. Sem saber sequer se era extinto o fogo.
Chorei e deixei que do meu sangue se fizesse aguarela nos contornos do teu corpo nu. Fiz-te quadro de fantasmas. No tocar da tua pele absorvias-me em tinta. Eu como espectador extra-corpo a um circo xamanico de amantes.
Tomara que consumisses a minha existência como um cigarro barato a esfumar-se entre os teus lábios abertos, cansados, carentes.
Cortei a pele aos quadrados, nela impressos os sonhos e as ilusões, fiz uma manta de retalhos com que te tapei o perigo de sermos felizes.
Pus sem saber se era uma despedida os pés em cima dos teus. Espero. Agarrei-te pela cintura. Engoli as lágrimas, dançámos. Encostei ao teu peito o ouvido frágil na esperança de se fazer som. Desci à vida. Espero. Não descolei os olhos dos teus. Tornei-te a fazer quadro do meu sangue diluído em dores. Ainda te olho. Espero.