We went to Devon for a few days. I was on the beach at 06:45 each day to watch the sun rise. Nothing recharges my batteries more, than being somewhere that beautiful and seeing my gorgeous boy charging across the sand dunes.
I’ve decided to spread a little awareness. This is partly due to the fact that my boiler has died and it’s 15C (59F) in the warmest room in my home. I plan to spend the day hibernating under blankets – and a blog post seemed more sensible than blowing my wages on internet shopping! So yeah. I have prosopagnosia.
You may have heard of this by its nickname – face blindness. Put very simply, you all look the same to me. Some people acquire this through injury, I was born with it. All of my other mental processes are normal. (I think!) I had an inkling during school that maybe I was a little different. In my early 20s, I was mugged and first heard the term ‘face blindness’ when I was asked to sit with a police artist – and I was of no help whatsoever. “Describe his eyes.” “Erm… he definitely had two….” It wasn’t until I was in my 30s and braved this internet malarkey, that I discovered Prosopagnosia and realised that I had an actual ‘thing’.
I’m lucky. Some people have it worse than me and can’t recognise themselves in the mirror, or even their children. If you put those people at 100% on a scale, I’m only at about 68%. (According to tests.) I’m actually part of 2 studies at the moment. Not so much as one of the participants, but in helping fine tune slightly ambiguous questions that are asked during tests.
I won’t go into the technical stuff. There’s a Wikipedia page for those interested. This post is how it affects us and the implications it has on life. The easiest way to describe it, is like the Matrix film. Imagine living in a world of Agent Smiths. What this means in reality, is if you’re out and about and someone walks up to you and says hello, you freeze and your brain goes ‘Oh crap.’ Then you go into overdrive. Some people seem to work from a mental list that groups people into places – and they try to initially work out which group you belong in and then narrow it down. I seem to do this the other way around. I get a sort of mental list of everyone I’ve ever known and start deleting people to narrow it down. And bear in mind that you have to try and do this while you’re having a conversation with someone that you’re not sure who it is – and try and ensure you seem ‘normal’.
Things that make life extraordinary difficult include hats and sunglasses. Hairstyles and facial expressions get hidden which can be huge things to clue us in. The same goes for hoods in the winter and scarves pulled up high that muffle voices and possibly hide an easily identifiable scar or mole. (I can’t spot a good friend in a roomful of strangers. But I could draw a pretty accurate map of freckles for anyone I interact with regularly.) The other is seeing someone out of context. If I’m working in a care home with 28 residents and 8 members of staff – during that shift, I’m only running those names through my head. However, when you see a colleague in the supermarket, you are so screwed. A real life example of an out of context situation. I went to my nan’s house. There was a man there, working in the garden. I assumed he was a friendly helpful neighbour. 20 minutes later I discovered it was my cousin who I usually only see about twice a year. A cousin in my cousin’s house is easy. A cousin in my nan’s house, not so much!
You learn coping mechanisms. Some people learn to became fashion gurus and identify people from clothes. This never really worked for me, because in the UK all schools have uniforms and then I ended up working in Healthcare, which is also a world of uniforms and hair tied back. I have become a bit of an expert on the way people move. Everything from the way people walk (trust me – you all do it differently!) to the way a woman fiddles with her hair and uses her hands as she talks, or the way a guy fiddles with his trousers! Next on my list is voice. Not just your actual voice, but your speech patterns and the phrases you use. And one of my best tips if you’re still stuck after a minute or so, is to ask ‘how’s the family?’ Because usually a name will get mentioned that clues you in.
You can come across as anti-social as you shy away from social situations. You will always choose a girlie night in at a friend’s house over a night on the town. You want to slap women that change their hair regularly and men that regularly change facial hair. You dread going into town alone. Especially as you have to wear a permanent cramp inducing smile on your face as too many times you have been confronted with “What’s up? I saw you the other day and you blanked me.” Which now means that slightly undesirable characters will stick to you like glue. You know there’s always that one strange person on the bus? I am a magnet for those people because I’m the one that smiles at them. You end up in your family’s bad books, because you reluctantly attend weddings and funerals, but always find a way to immediately leg it after the service and not stay for the after party.
A lot of films are a pain in the butt and hard to follow – as the buggers change clothes regularly. And if it’s a military uniform film or a martial art film where they all have scalp locks or shaved heads – just forget it. Your husband can only handle you saying ‘Is that Jet Li?’ about 20 times before he gets a pained expression on his face and sighs a lot.
Sometimes things happen though, that you can giggle about later. A couple of years ago, I bumped into my vicar while I was walking my dog. We had a chat and said our goodbyes. A couple of months ago, I again encountered my vicar on a dog walk. Only, after blurting out that I was sorry I’d been absent from church for a while but life had been mad etc…etc… It turned out to be a mate on his way home from a fancy dress party. You’d think a cassock would be an easy clue – but apparently not!
But then something happened and life got so much easier. If you have prosopagnosia, do this. If you know or suspect someone has it, tell them to do this. It’s so simple, but boy, does it make life so much easier.
Tell the whole bloody world – and tell them via Facebook. Do a ‘coming out’ post. My friends have been so awesome. They now greet me with “Hi Sam, it’s ‘x.’ ” I cannot properly express how much difference this makes to daily life. Or the tears of joy when I finally agreed to go to a staff party after working there for 15yrs – and found they’d all made name tags. And doing it via Facebook has an added benefit. When you’re in a supermarket or something and stuck and the person doesn’t introduce themselves, you can immediately discount everyone on your friends list while running mental inventory. And people will also express relief as they ‘thought something was wrong’ but now they understand that I just didn’t know it was them.
So yeah. That’s prosopagnosia. And bloody hell – it’s so cold in here!
I tried to banish the ‘hippo in a tutu’ mental image from my brain – and armed with my new swim dress went swimming for the first time since about 1988. I’ll admit I stayed in the changing room cubicle for longer than necessary, when I heard lots of voices. Then I became more alarmed as more and more people entered the changing room. I so didn’t want to step out of those doors. Then it occurred to me that they’d be getting in their cubicles to undress – and if I waited for them to leave, they’d already be in the pool and would witness my dash from changing room to water. So I legged it!
Fortunately, hubby emerged from the men’s just as I came out of the ladies, so I did my best to hide behind him, while hissing “hurry up” as I legged it poolside. I decided to ignore the ladder into the pool as I didn’t want to greet the swimming community arse first. So I sort of squatted, put a hand on the ground and hopped in, sending a silent prayer of thanks that I didn’t cause a tidal wave and drown 2 nearby children.
3 things immediately crossed my mind. Pools are a lot warmer than they were in 1988. Sensitive skin having received bikini hair removal cream 45 minutes before experiencing a chlorine pool, STINGS LIKE HELL and sets your… er… undercarriage on fire! And the tutu part of the swim dress is good for hiding tops of thighs while upright on dry land, however is most peculiar under water. It floats up and makes you look like you’re wearing a Portuguese man o’war!
I moved away as there was a rather professional looking swimmer rapidly approaching the end of his lap and on a collision course. I was then about to whack hubby for inappropriate touching in a public place, until I realised I’d positioned myself in front of a powerful jet of water, that I guess was a filter or something. As the jet pummelled my butt, it did occur to me that this might work as excellent cellulite distribution or something – but I realised it probably wasn’t the done thing to bend over and stay there for 20 minutes! Time to swim.
I quickly established that I’m out of practice at being comfortable with my whole face being under water. So I did a less than perfect breast stroke with only my mouth going under on each stroke. The first 12 lengths went ok. Well, I say 12 lengths. Everyone else seemed more of a professional swimmer, so I did many zig zags getting out of everybody’s way, but I touched the ends 12 times! Then I realised that my wedding ring had come off in the pool. Bloody weight loss! I couldn’t get right next to the bit where the life guards sat, as there were 2 women doing a very impressive butterfly stroke at 300 miles an hour and I feared for my life. So I waved my arms in the air and yelled “hey!” to get their attention. Then very quickly shouted “I’m not drowning” as they both leapt off their chairs while kicking off their shoes!
I called that I’d lost my wedding ring and if one got handed in, it was mine. A child next to me immediately said “I’ll help look” and did and impressive surface dive. I started to panic when he didn’t remerge but then he popped up at the opposite end of the pool. I was going to call to him to be careful when he went straight back under and did another full length. This time when he emerged, he was next to his friend/sibling who asked what he was doing. When he told him, the 2nd child cupped his hands and yelled “Dad! That lady has lost her wedding ring. We’re going to find it.” The entire pool heard and bless their hearts, nearly all of them stopped swimming and immediately starting diving. I was embarrassed, grateful and then had a heart attack as I realised that the whole swimming community was now under water, with the parts that I wanted the tutu to hide now in their direct line of sight!
The butterfly stroke amazons even clocked that something was going on, as everybody was now swimming beneath them. They stopped and looked round, to be faced with me and about 20 pairs of legs in the air. I almost got the giggles. You see Youtube videos of flash mobs in shopping centres breaking into dance routines. It crossed my mind that they might have thought they were witnessing a synchronised swimming version. However, I got my hysteria under control and told them about my ring. The mermaids immediately joined the search. 3 minutes later my ring was found. Hubby then swam to me and I had a sort of second wedding as he put my ring on (middle finger this time) to a group cheer and communal splash. 2 minutes later, the whole pool was swimming again. The only difference was that the hippo in a Portuguese man o’war tutu now had a flaming red face!
I managed another 10 lengths, taking my total to a measly 22, when I started to feel a bit of a strain in my armpit. I can’t even ache properly. I can’t impress colleagues at work by circling a shoulder and saying I strained it swimming. Instead, I can only whimper that my arm pit feels funny!
The only other thing of interest happened as I left the pool. The swimming tutu has foam boobage support. But it’s not bra like. It’s more like a shelf. As I climbed the ladder out of the pool, an accordion type thing happened. My thigh hit my belly, my belly rippled up to hit the foam shelf, and as I rose out of the pool, the shelf lifted – and I almost came straight out of the top of the tutu. I let go with one hand to grab the swim dress before I flashed the guards. And then sent another prayer of silent thanks, that it was hubby coming up the ladder behind me – and it was his head that I sat on!
So yeah. I’ve been swimming! And I’m going again tomorrow. 🙂
So I braved the gym and now want to brave the pool. I bought a ‘swim dress’ – swimming costume with tiny skirt attached. I’m not bothered when I’m in the water. It’s that pool side dash from changing room to pool that has me quaking in terror. Swim-dress arrived. Have decided it makes me look like a hippo in a tutu!
Met a dog walker I’ve not seen before, this morning. They had a mental spaniel on a lead. I walked with them for a little way and they looked at Dex loping across the field and said, “I wish I had an easy dog too. This one won’t get in the car and I have to pick him up.”
Easy?!?! I’ll do a list of ‘things Dex doesn’t like me doing’ another time. This is the ‘things that terrify Dex’ list. Terrify as in, if outside he hides in hedges and takes a long time to come out. Or if at home, he hides in the bedroom and won’t come out. Which is really pesky if I’ve done a night shift and want him to go out for a pee before I go to bed. He is the best dog in the world. But he is by no means easy. This list is the main things, not all things – in order of scariest.
Pulling Sellotape off a reel
Free-range balloons and plastic bags
Putting up the ironing board
Toaster popping up
Abandoned shopping trollies
Trees in the wrong place. (When they fall down.)
Piercing a microwave meal
Noisy trees in the wind.
Very noisy rain
Children under about 10.
Squeaky window hinges
Tearing envelopes open
Wheelie bin lids closing
The sound of golf balls being hit
Rolls of wrapping paper
Husband with a violin
Having to deal with more than 3 dogs at the same time
Any household DIY or gardening tool
Sliding coat hangers across wardrobe pole
Tearing tin foil or cling film
Closing curtains and blinds
Doing up a zip
Opening the attic hatch
Clanging metal gates
He is NOT an ‘easy’ dog!
My daughter would have been 24 today and I feel the need to type. My first pregnancy and all that usually entails. The joy, the pride, hopes for the future and a healthy dose of fear. Everything progressed normally in every way. I puked, it got better, I bloomed and then felt like a whale. Everything was ready, the Moses basket made up and waiting. I went full term and had a normal labour. I delivered a beautiful, perfect baby girl, with a thick head of red hair. But she never took her first breath.
No abnormalities inside or out. The post mortem later revealed nothing wrong whatsoever. “It’s just one of those terrible, sad, mysterious things” they said. She’s normal, your delivery was normal and you’re fine. Fine?
I won’t describe my feelings over the next few days or the pain of having to remain on a maternity ward. Of having to sign consent forms for the post mortem and knowing where she was going when I finally let her out of my arms and my sight. Seeing the vicar, going to the town hall to register both birth and death and making funeral arrangements.
Some things are still so painfully vivid and yet others are hazy. I can’t remember the outfit we chose for her to be buried in. I know she had a picture of me and her father in one hand and a tiny pink silk carnation in the other. So why can’t I remember her clothes? I remember screaming ‘don’t touch her’ when they asked if they should cut off a lock of her hair for me to keep. I regret that decision now, I think.
I remember thinking how cruel it was. If she ‘wasn’t meant to be’ why couldn’t I have miscarried at 6 weeks? I went to one SANDS support meeting. (Stillbirth and neonatal death society.) I listened as a woman wept while she told her story, of her little boy who died at 2 weeks old of a heart defect – and I felt overcome with jealousy. She had looked into her child’s eyes. I never did that. She took out pictures and another piece of me died inside. I have pictures. Pictures of a perfectly normal looking baby girl with bright red hair. But I’ve always kept them hidden. Because I know, in those pictures, she’s gone. And it just doesn’t seem right. I wish she’d lived, even if for just an hour – so I could proudly display her picture with those of my sons.
Her cemetery is next to a garden centre and on the funeral day I went in for flowers. There was a pregnant woman outside smoking. I’d never felt rage like that before. How I went passed without screaming at her, I don’t know. I did nothing wrong – and I was about to bury my daughter. Here was a pregnant smoker, who in my opinion did not deserve to be carrying that child.
The funeral. Tiny white coffin, carried by one. I’m not sure if my family have forgiven me for that day. Grief affects people differently in strange ways. I felt like I was holding on to my sanity by the thinnest of threads and so wrapped up in my grief I couldn’t cope with anybody else’s. I requested no one else be there, but me and her father. Utterly selfish in grief. Then the part I hated the most. A container of soil handed out towards me. I took a handful. And then I stood looking down at this tiny white coffin that contained my hopes, my dreams, my child – and all I could think was ‘he wants me to throw mud on my baby’. Opening my hand and letting that soil fall, is still the hardest thing I have ever had to do.
Over the years, I have lost other people I’ve loved. It’s so different though. Obviously no one should have to bury their child – but the grieving process is so different. Usually, amongst your grief, you have those fond memories to carry and reminisce. Stillbirth grief differs though, because you don’t know. As well as losing the physical presence, there’s so little to remember and smile about. It’s about the not knowing. The what ifs. And what could have been.
I suppose if you spend enough time in cemetery’s this phrase seems cliché. But it was the first time I’d seen it- and it’s stayed with me. 3 graves to the right of my daughter, a baby boy’s grave has part of a Keats poem. It reads:
Please tread softly, because you’re stepping on my dreams.
Not long after his noise sensitivity and hiding issue manifested that I wrote about HERE, we thought Dex was beginning to show signs of aggression. Upsettingly for me, it also seemed to be aimed primarily at me. He would be lying near me chewing a bone, or even sleeping upside down in another room – and would suddenly come flying at me growling or barking and would sometimes tug at my clothes. Within seconds of this apparent madness, he’d be back to my normal dog again. For a while, it was so frustrating as there didn’t seem to be any reason for it. I could simply walk across the room and would suddenly get accosted. He never bit me, but it was a bit scary. Then one day, I had the light bulb moment.
It was fortunate that Dex was in my son’s bedroom while I was in the lounge, as the few seconds it took him to get to me, made me realise what was going on. It was hot and I decided to open the lounge window. As I opened it, it made a horrible noise and I just had time to think “I must oil those hinges” before a distressed, snarling dog came flying at me. Bingo! This has something to do with noise. It didn’t answer all questions, but it was a start. However, once we had this base to work from, everything fell into place. Trial and error showed there was a 2ft ‘danger zone’ in front of the lounge window. If he was in the room with me, the growling would start as I approached this zone. This is what I mean when I say, a lot of problems occur because of a Collie’s ability to anticipate. Anybody can open any window in my home, with the exception of the lounge. He’s far worse with me when it comes to this window, which I’ll talk about another time – however, we now have a work around.
I’m sure dog trainers will say I’m doing everything wrong, but this works. People aren’t joking when they say Collie’s can learn an enormous vocabulary. All I do now, is tell him. I say, “Dex, I’m opening the window.” He will immediately come to my side and escort me to the window. He will go very still and watch intently while I open it. Once done, he’ll now wag his tail and return to whatever he was doing. Friends think I’m mad. But telling him is a hell of a lot more simple, than having a snarling dog charge at you, at 30 miles an hour! And in case you’re wondering, yes – I did oil the hinges 3yrs ago. And no – it didn’t make any difference at all. He just has a window-ism issue!