Tuesday, 24 January 2012

It's hard to get rid of the arm

I mentioned my prosthetic arm in my previous post. I'll tell you more about my relationship with my arms. :)

When I was born in 1976, my parents didn't know what to expect from life. They didn't know what the future held for me, and what struggles I would be facing growing up. They didn't know anybody like me. They'd never seen anybody like me. The doctors weren't sure why I was born minus the forearm, but since they couldn't observe any other malformation they came up with the conclusion that my umbilical chord must've wrapped tightly around my arm (just under the elbow) during the early stages of the pregnancy and slowly deprived the arm of oxygenation, till it shrivelled/fell off/dissolved in the womb. I now know it's called Amniotic Banding Syndrome.

My parents of course wanted the best for me and to make my life as easy as possible, so they arranged to get me fitted for a prosthetic arm as soon as possible, thinking it would make my life easier.

As much as people complain about it, the health system in Italy is pretty good. Must be because many Italians tend to be on the hypochondriac side, or at least very very concerned with their health (Italians out there, please do not send hate mail). So much so that, when someone asks you "how are you?" in Italy, it is socially acceptable to give a brief complaint and overview of your current medical situation.

But I digress. What is really good is that the health system always provided me with prosthetic arms with a minimal wait.

The smallest arm I had was fitted when I was around 1 year old. It was little. It is kind of cute seeing such a little prosthetic arm.
But I never liked wearing it. As a baby I'd always complain to take it off. It simply got in my way. Apparently I started walking without crawling first. I'm not sure whether the arm would've helped with the crawling, I simply could not bear having that thing on me when I was very little.
I've had a few arms over the years, I used to mostly wear them for special events, it kind of made pretty dresses look better, because I didn't have to roll the sleeve up as I do when I'm "au naturel".

1983, dressed up for Carnival, carefree :)
The rest of the time, my life was easier without the prosthesis: as a kid, I learnt how to do everything without the arm, that's the way I was born so that's the way I knew how to do things.
With my little elbow I could hold onto the swing and swing like any kid, ride a bike like any kid (albeit a little hunched over to one side...),  swim, play basketball, cook, I even learnt how to knit. Holding a knitting needle with your elbow ain't easy, I can tell you; I'll never be one of those grey-haired ladies that can go crazy fast and knit you a jumper in 1 day, my elbow joint does get sore after a while, after all elbows weren't made to knit... But I love knitting, I don't know all stitches yet but I am very accurate and I love learning new things and I am stubborn and determined, and, with a few breaks here and there, I can probably even knit faster than your average Jill ;)

But at age 12 things changed. Hit puberty, issues with image, self-image, self-confidence, fitting in etc etc.
And I also started having back pain. The lack of my left forearm meant that the right arm, therefore the right hand side of my body, was a little heavier. That meant I started imperceptibly leaning a little on the heavier side. Which could've increased with time. Which could've down the track caused bigger problems like scoliosis. So my orthopaedist urged me to start wearing the prosthetic arm more often.
The arm, being in those days made mostly of plaster (hollowed), was orthopedically made as to balance out the weight on both sides of the body and ensure correct posture.

So I started wearing the arm. Every day. All the time I was out of the house if other humans were likely to see me. Just like clothes. Just like other women wouldn't be caught without make-up. It was my cover-up to the world.

Because my prosthetic arm was being made by an exceptionally good orthopaedist who made it look so "lifelike", with the perfect measurements and the smooth silicon cover, people wouldn't notice straight away that it was fake.
2001, at a cousin's wedding: from a distance the left arm looks real
And that made life easier.

People I knew forgot about my "disability". I think it made some people more comfortable, not being confronted every day by the unfairness of life, some people just can't get past the ugliness of imperfection and look at the human inside the shell. Those are of course the same people that judge you on your fat or your pimples or your floppy boobs before you even open your mouth.

Some people simply forgot because I always used my prosthetic arm with such nonchalance, you wouldn't know it was fake unless you purposely stared at the hand itself, which had fixed fingers that could not move by themselves.

And by the same nonchalance, new people often didn't notice. Maybe because I was born this way, hands tend to be, after the face, the first part of someone else's body that I pay attention to. Clearly not the first thing others look at! You wouldn't believe how many people don't notice such "details". Someone I know (now a good friend of mine) noticed after 2 months she'd known me! Granted we were working together in a call centre and she could mostly only see my face poking out of my cubicle...

Intimacy is another different story... Like women so ashamed of their body they wouldn't let their partner turn the lights on during sex, I would always keep the arm on, unless it was a "serious" relationship. I think I felt comfortable enough to take my arm off in front of Dan when we'd already been going out for 5 months.

All this changed when Sosi was born. When Dan's family came to meet her at the hospital, I was faced with that life altering decision: continue the charade of appearances and never being fully myself and not being able to properly care for my baby, or ditch the arm and be totally in control of my life. It was a no brainer.
6/12/2007: free to be my true self, that's 40 minute old Sosi feeding :)
Outside of my family, nobody in Australia had ever seen me without the prosthetic arm. It was scary. It was like presenting myself naked to the world. This is Me. This is who I truly am.
It was so liberating! It took a while to get adjusted to, there were still occasions and events I'd go to where I'd wear the Thing, but I had the courage to be armless where ever I went with Sosi. Including mothers' group meetings. Which as many of you know, can be so daunting...

It's still not easy to totally ditch it.

Life is easier if people don't notice that you're physically different.
We all pass judgements. It's normal. It's human: Nature gave us this sense of having to make a quick judgement so we could quickly run away from predators.
So I'm not saying that passing judgements is wrong per se. But letting our ignorance or narrowness influence our behaviour and the way we act towards someone is really not nice. Oh how lovely would the world be if people kept an open mind every time they met a new person... and treated every one the same before setting their opinion in stone.

Some people are scared of the physical difference and they become rude. Some people fear the difference and avoid me. I clearly prefer the latter, I have a profound dislike for rudeness!
[as an aside: if I ever meet you in person and I inadvertently behave rudely, please let me know openly so I can correct my ways and become an ultra-polite person!] [but maybe some people are rude just because they're rude to everybody...]

Some people simply don't know how to deal with diversity. They are afraid of hurting feelings, of saying the wrong thing, they fear upsetting me, and become over-nice and treat me like a fragile and wounded creature. I dislike this immensely. It's always hard knowing wether someone offers to help me at the shops etc because they are polite and want to help the mother of two busy kids or because they pity me and want to help the poor little defenceless disabled. I really hate not being able to tell the difference.

Some people are just curious and want to ask questions. Like how it happened etc. Because I'm outgoing and a little loud and very chatty I don't quite fit in the stereotype that many have, of the shy reserved differently abled person. But they often don't ask. Unless they're under 6! I love how kids don't have any fear to ask! And I love when I meet curious grown ups that realise it is not a disease, it's just a missing arm and they go ahead and ask questions!

But there's another category of people acting on a quick judgement: people who pity you but who are actually so ignorant on the matter that they start treating you like you're mentally deficient. I'm missing a forearm, not a brain!

Nowadays I am still tempted to keep the arm on. It is like wearing shoes. So much more comfortable without... but you still wear them in public.
It is one of the condition of my driver's licence that I do wear it. It does actually help with the steering.
So when we go places, I strap in the kids, put the arm on, drive around, park the car, take the arm off, unstrap the kids etc.

But what to do when I'm out alone? The instinct is still there, to keep it on to cover up. If I ever go to the shops by myself, I tend to just leave it on. It's just easier. No questions, no looks, no overzealousness.

But this week I'm going out for lunch, to celebrate a good friend's birthday. No kids. There will be people I don't know. I'll be driving there by myself. I will be there to engage with other intelligent grown up humans, not just buying quick groceries.
What will I do when I park the car and I have no kids to take care of and no bags to carry? Will I finally be so true to myself that I can totally ditch the arm? Sometimes the kids are my shield of strength in front of the world, it is scary facing the world naked, without protection.
If I keep it on, people will not pass sudden judgement. But if I keep it on, my conversation will be stifled as I will not truly feel comfortable wearing it. But these will be smart people, they will listen to me before setting their opinion of me in stone, won't they? And if they do, why should I still care after so many years? My forearm will be forever missing, why can't I just stop caring about the way people react to me?

I'll keep you posted. I really hope I have the guts to walk in that restaurant without the arm. I really hope I can walk head high, proud of who I am and the way my body is asymmetrical without fearing judgement.


  1. I loved this post, and your pic with your new babe just makes my heart melt. You are who you are and there is no shame in that x

  2. I have tears in my eyes reading this Sara. It's so interesting to learn about your relationship with your prosthesis and journey to acceptance. The photo of you after Sosi's birth is absolutely beautiful. Both of your arms are beautiful. And I would love to see you knit! x