I Can’t Wear High Heels, But That’s Ok

Back to blog2 years ago by Fairlie
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Fairlie who has lemt side hemiplegia cerebral palsy  at the pool on filming day
 
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For 27 year old Fairlie Hobson who stars in our new TV commercial and has mild CP, the assumption of strangers that CP doesn’t impact on her daily life can feel just as challenging as living with a disability.

At first glance, no one would necessarily assume or even think I have a ‘physical disability’ per se. I’ve lost count of how often I’ve been asked how I broke my ankle or what I’ve done to my foot. The most common reaction I get when I tell people is ususally  ‘really? I would have had no idea unless you told me.’ Although, saying that… There are always people that ask what I’ve done to my foot, or why I’m limping (which I don’t mind at all) – if they’re nice. There are  a lot of people that aren’t though.  I am now 27 years old and I was born with mild left side Hemiplegia spastic cerebral palsy. It affects my left side, but mainly in my left hand and foot.

I was born 13 days overdue with absolutely no complications. I passed all my tests and at a healthy 10lb 4oz, I was a good weight too. I was baby number 1 and mum always said that if I wasn’t her first, she would have noted the ‘warning signs’ (preferring my right hand a lot more than my left, my left arm and leg not moving as much as my right) a lot earlier. As a first time parent though, I guess you don’t know what  is ‘normal’ etc… Despite my mum having slight trouble breastfeeding me (my mouth muscles were weaker which meant feeding was harder), there was nothing out of the ordinary that signalled alarm bells for my parents when I was a baby. It was only when I started to walk at 13 or 14 months and my parents started to see more and more that my left foot was rolling over and I was holding my left hand in a fist, up against my chest that they knew something wasn’t right… I was (officially) diagnosed when I was 15 months old.

The toes on my left foot point downwards and inwards with my heel off the ground. I can’t really wriggle my toes, but I’ve always been encouraged to try. I tend to walk more on the side of my left foot too which results in ‘my heel’ being on the side of my foot… Painful if you’re on your feet all day (and expensive with shoes as I’m always wearing out the sides).

When I walk (without my splint), my left foot rolls and for people who don’t know me (or anything about cerebral palsy) it can look like I’ve broken my ankle/really hurt myself… I haven’t. Most of the time it doesn’t even hurt me, it’s just my normal way. It does look bizarre though if I’m walking down the street.

I can totally understand why people look strangely down at my foot. To be fair, if I had no idea I would probably wonder too. It’s the ‘uknown’ to many people…  I often feel people staring thinking ‘what has she done?’ My brain just can’t send those signals to my muscles that say ‘work it’ like someone without CP would…. It’s frustrating as my head wants to send the messages to move or ‘relax’ but the more I try, the worse it gets and my foot and hand just don’t listen! When I walk, the muscles in my left foot seize up and I can’t do the ‘heel to toe’ motion that I want to do – my mind says ‘come on Fairlie, it’s easy, just do it’ and my body says ‘Ha. Nice try. There’s absolutely no way this is ever happening for you!’

For most people with hemiplegia, they often find out that either their hand or foot is more affected. With me, my foot is more affected, but saying that my hand still has its moments. When I was younger, a lot of my therapy was focused around making sure I didn’t clench and make a fist or my wrist didn’t bend (and look limp).

 My parents have always (and still do) go to hold my left hand if they see I’m clenching it or simply say ‘lefty’ which is a little reminder for me.  It was my appointment with Occupational Therapist, Dee St John at the recent drop-in clinic at Allambie Heights that reminded me of this when she said ‘use it, or lose it!’  So true. Thanks Dee!

 

My left hand is always going to be weaker than my right. That’s just a fact of life and I’m okay with that. For now, there’s no magic cure for cerebral palsy and you know what? I’m actually okay with that. I actually don’t think I’d be as resilient as I am without  ‘Lefty’. 


I still find that if I get tired, I tend to have to force myself to hold my hand (and arm) down by my side… Or distract myself and place my handbag over my left arm to make sure it’s not just ‘hanging’! It’s amazing what you can learn to do and adapt. For example, I can touch type (just as fast as people who use two hands) with my right hand.  A bit of a party trick…

Since diagnosis, I have had a splint/AFO to wear. I used to wear it every day to school and as I got older and more stable, I have used it less and less although I do feel better/more steady with it on. The difference is amazing at what it makes to my foot placement when I put my foot down! 

I had serial casting on my left leg when I was about 14 or 15 – 2 weeks at a time over 5 or 6 weeks to try and improve the position of my foot. I remember it felt good at the time and I could tell the difference, however the effects were short lived (for me personally). I might try this again down the track…

My hemiplegia affects me in many (small) ways. For example, I fall over… A lot. I’m just naturally clumsy – my friends know me for it…. I don’t have good balance at all. My left foot rolls and can drag, so I have been known to trip over my own foot many times (so embarrassing!) Thankfully, I’ve had friends and ex-boyfriends look at it as one of my (many) quirks. 

My friends know by now not to ever trust me holding a glass. I start chatting away and get excited about what I’m talking about, put my glass into my left hand and before I know it, my drink is on the floor (and most of my friends!) Those are the small quirks of being my friend I guess…  Luckily for me, my friends are the best and completely understand.

If I am on my foot too long or go to the gym wearing my AFO, my foot gets a strange burning sensation (from probably being tired and working hard) and only sitting down with my foot physically off the floor eases the pain… I also get random ‘spasms’ every now and then. The only thing I have definitely found that triggers them is when I’m concentrating extra hard on an exercise or when I over exert myself and become tired, but they can occur at any time. This can also happen if I’m exercising or after a big night out of dancing or being on my foot for too long. My foot and leg gets so tight and I can’t walk – the only way to fix it is to stretch it out, using my AFO or stretching… I can wake up after a night out dancing with my friends and not be able to walk for hours the next day. Totally worth it though!

I have what people consider mild cerebral palsy, but it’s amazing the type of activities with everyday tasks that I have difficulty with or that my cerebral palsy is impacted by.

Even though I can get there (eventually), the spasticity on my left side can lead to difficulties with tasks involving my hands and arms like – 

  • Getting dressed (buttons are not my friend)
  • Hanging clothes on clothes hangers (patience is a virtue)
  • Washing my hair – my left arm can get tired, so I end up doing it all with one hand/arm
  • Holding a glass – imagine this scene: you’re at a friend’s party and you’re chatting with friends and holding a drink. I talk a lot with my hands and when i get excited I don’t think and put my drink into my left hand…  I can sometimes be lucky, but most of the time it ends up giving my friends (and myself) a refreshing shower. Whoops.
  • What about when you roll up your sleeves on your shirt? Rolling up my sleeves on my shirt/jacket on my right arm requires lots of time (and results in profanities from my mouth out of frustration by the end)
  • Tying up my hair was always a bit tricky and I couldn’t do that until about year 9 or 10 of school. Forget trying to do a braid or anything too fancy… I was just happy to get a topknot down pat!

One thing I still struggle with is getting worn out quickly. My mum always said ”’there’s nothing worse than a tired hemi” and that is completely true.  

I become more clumsy, emotional and just worry and if I lay on my bed I’d definitely fall asleep.  Most people get tired and exhausted and a bit ratty when they’re tired, but with hemi,  I guess you’re working twice as hard to do activities that someone without a disability would do without thinking. My right side definitely overcompensates too which makes it a never ending cycle. I think that’s an interesting point actually. When I was younger,  I was often accused of being lazy or a ‘bad friend’ when I would say no to things.  Having a disability that’s so mild, people (even my friends) can forget that I’m overcompensating with my good side and it tires you out more quickly. It’s better now that I’m older and my friends know me inside out, but growing up it was definitely a hurdle.

I’ve had a friend try and paint her nails with her mouth once leaving her frustrated (and a little tired) afterwards, but at least she could see the energy that went into it… She gave up after 3 nails! 

Just another little thing that people often don’t think of unless you need to, but shoes! I’m lucky enough to be reasonably tall so I don’t need to wear high heels  which is good because I couldn’t even if I was short (haha). My gait and the way I walk means I’ll never be able to wear heels. A little personal goal for me was learning to walk in thongs (great for summertime), but it’s still not the easiest. Finding shoes (for my splint) and just in general when I don’t wear my splint is tricky…. My feet are 2 different sizes too. I often have to buy 2 pairs of shoes which can be extremely expensive. Making sure shoes stay on my left foot is hard too. With the way I roll, shoes often just fall off and that’s so embarrassing. I can be on the bus or escalator and have my shoe fall off….  Way to go, Fairlie! Thankfully, as I’ve got older I’ve learnt what shoes are generally better than others at staying on my foot (girls – look out for ballet flats with elastic edging that hug the foot). Needless to say that Target’s shoe section is my friend. 

I had never spoken to anyone else with cerebral palsy/hemiplegia (besides the children I used to see when going to therapy) until social media came along and I connected through groups and forums on a whole new level. I truly believe this has helped me tremendously – it’s a remarkable comfort to know you’re only a few clicks away to be able to ask (and answer) questions to people living what you’re going through and simply understanding. On these forums, there were people (teens/adults), like me with hemiplegia and diplegia and other cases of cerebral palsy too…. as well as similar disabilities…   It’s the kind of platform I wish my parents had for reference when I was younger – back in the late 80s/90s there was nothing of the sort and they really only had what doctors were telling them and it’s changed so much since then…

I started university, studying Early Childhood education (I’ve always loved children and it seemed like a natural path for me to take). However, after my second practical of working in a centre and realising that I was exhausted after being on the go all day that maybe I needed to rethink where I was heading…

I ended up studying social sciences at university and ended up doing my honours and completed my masters in development studies and culture change.  I had a lot of questions  during my first few years at uni- asking if my foot was ‘alright’ or if I had a  ‘broken foot’ or questions like why I touch typed with one hand for.  I would tell them and they would find it fascinating as there were lots of people who had no idea just how much cerebral palsy could vary. The less of a deal I made and proved to them that I was more than capable, the more they could see me and realise I was utterly fine. At uni, I had a note taker and special provisions when it came to exams or essays with extra time and rest breaks (if I wanted/needed it). The staff at uni couldn’t have been more helpful and it really got me through. I loved every single minute! I graduated (after 8 years of hard work) at the end of 2012. It was the best feeling ever, but at the same time I didn’t want to leave either… Typical uni student – ha ha.

I’m currently writing a book. It’s talking quite openly about my life experiences with hemiplegia and cerebral palsy which I hope to publish (and finish) one day. At the moment, it is  still only 3 or so chapters in so a work in progress…  I think because I am what you would consider, ‘mild’ it can be a challenge as people (who know nothing about cerebral palsy) do not look at you at first glance as someone who may need some extra help every now and then let alone as having a disability that is often misunderstood.  This is why I’m writing a book. I have so many stories of different people (who don’t know me – bouncers, boys at pubs, nasty girls out and about or in bathrooms) being ignorant (plain nasty/rude). These people are so unkind and simply bad-mannered and I know deep down it’s their problem not mine, but it still really hurts when people are so nasty without even knowing you.  Thankfully these times have highlighted my amazing and incredible friendships – my gorgeous group of friends who stick up for me every single time and who I know have my back. They know who they are and they’re incredible and I know I’m lucky to have such supportive friends in my life.

My independence is important to me.  I have found certain things that work (painting my nails using my mouth, one-hand touch typing and leaning over to going from ‘park’ to ‘drive’ with my right hand) but there are certain things that don’t too. Yes, I am 27 and cannot hang clothes on a clothes hanger with ease (it’s not uncommon for it to take 10-15 minutes to hang one item) or wear high heels – which may not be something you would connect to someone with having a disability anyway, but when you’re ‘mild’ people don’t necessarily view you as having any (physical) challenges and often ask me why I never wear heels out (good thing I’m tall!) I roll like nothing else, it’s painful… Oh, and on top of that I would probably look like a newborn baby giraffe taking her first steps… That’s why I don’t wear heels.

 I’m passionate about disability and in particular cerebral palsy and all the interventions and research that is happening across this area. Essentially as long as I am happy and loving what I’m doing, I’m sure everything else will fall into place…