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.