Category Archives: Personal

Our Cat Has a Phantom Limb.

In the never anticipated sequel to ‘My dog has unilateral neglect’ I am here today to tell you ‘Our cat has a phantom limb’ *!

*I feel it’s important to clarify right now we are capable of raising animals who don’t develop neurological conditions, currently we also have a relatively normal Labrador in our care and a large black cat!

This is Seres.

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Seres the three legged Bengal

Let me give you some background.

Seres is technically my boyfriends cat. She was bought just before he went to university in 2008. She is a 8 year old Bengal, and she is beautiful and I have decided she is now my cat too!

Shortly after Jake started at university, in the Autumn of 2008, Seres was involved in a RTA (road traffic accident), his parents went to the trouble and great expense of having her rear left leg surgically reconstructed with metal pins and plates put in to try to ‘save her leg’. The same surgery that I myself was to have the human version of just 7 years later, following a ski related accident, also in my left leg (at a much cheaper cost I might add!).

For 6 years Seres lived with her ‘rebuilt leg’, she never placed it on the ground when she ran and she could not bend it properly, so it would always stick out on strange and uncomfortable looking angles when she sat or lay down.
She went on to become a mother during this time, having a small litter in the summer of 2011, all beautiful, healthy and slightly mad bundles of fur and in 2015 she was neutered.

Seres before her amputation – Click for video

Despite the hormonal changes pregnancy and neutering might have brought about, I would describe her as a relatively ‘unfriendly cat’, not necessarily mean, or vicious but not the most welcoming of attention or giving. Compared to Esme, the overly friendly, tending towards needy, domestic black cat of Jake’s sister, Seres appeared cold and uncaring. Which, to be fair to me seemed like a ‘typical cat’, having grown up in a household of dogs. She would swipe out and hiss at Hector, the lumbering and aged yellow Labrador, if he just walked near her and she did not care to sit on anyone’s lap, ever.

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Demonstrating the way she’d sit pre amputation, ‘bad leg’ hanging off the edge.

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Four legs, but not happy. You can tell by the state of her fur to be honest.

Fast forward to January 2016. I was awaiting a second operation on my broken leg a year post my skiing holiday disaster, to decompress the sural nerve, as I’d been left with serious nerve damage which led to hypersensitivity and unpleasant sensations in my calf.
The day before I was due to travel to London for this operation I came home from work to find Seres standing by her food bowl with her ‘bad leg’ raised up not touching the ground and twice the size it should have been!

I rushed her to the vet (despite her protests at being touched) and made them take an X-Ray. Their initial advice had been to prescribe her pain killers and bring her back in two days if it hadn’t improved (thankfully, I could not have done this because of my own impending operation, hence asking them to X-Ray it right away). The vet returned from X-Ray looking shocked, Seres had shattered her tibia and had a spiral fracture running up her fibular! Best guess was another RTA.

We had two options, the X-Rays could be sent to ‘specialists’ who without insurance would charge up to £3000 or more to try to ‘rebuild’ the already once before ‘rebuilt leg’ if it was even possible, or she could have it amputated for a lot less (quoted £500, ended up more like £1000- but still better than upwards of £3000!) .

Now, I don’t want you thinking the cost was the main reason we opted for amputation. My boyfriend was quite prepared to call the bank and see how much he could borrow to try to ‘save her leg’. What swayed the decision in the end was my sudden realisation that for the past 7 years Seres might have been in the same kind of pain, or worse that I had been in the last year from my accident and nerve damage. I asked the vet if it was possible that she too had permanent nerve damage and was told it was highly likely. And that was it. Decision made. We both went into surgery on the same day. We picked Seres up a day later and she and I convalesced together in my bedroom for the following two weeks.

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Taking care of each other. Seres with her stump and stitches, my leg bandaged and raised after the decompression.

Cats are amazing. By the end of those two weeks she was cleared to go back outside. She showed no signs of infection, she’d healed and had her stitches out 7 days earlier than I managed and the hair on her stump was even beginning to regrow.

She has adjusted to her amputation better than we could have ever imagined, I suppose it was a relief really after 7 years dragging a useless and possibly painful leg around.

She has become a totally different cat. I don’t know if it was in part down to the two weeks in a bedroom together in recovery, where she was bribed with Dreamies for cuddles and sat watching “youtube videos for cats” and episodes of Archer with me, or maybe it’s entirely due to the absence of the pain she’d been in previously, or maybe it’s a bit of both. Either way, she is much kinder to Hector, only swiping at him now if he does something more deserving than just walking past her. She runs, boy does she run, she runs so fast it’s amazing to see! She enjoys cuddles (as much as any cat really can) and she willingly comes over to sit on our laps and fall asleep, she is the cutest, sweetest little killing machine alive.

Yes, ‘killing machine’, the only serious downside to this is that she now regularly chases and kills voles, mice, birds and rabbits in the garden, sometimes the rabbits are the same size as her!

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I suppose another negative is that she also appears to have developed a phantom limb. Thankfully, this is evident only in the way she will try to scratch her face with her missing leg. She shows no signs of pain in her stump, or discomfort at any other times, which is reassuring. I do my best to massage her hind quarters as she is putting so much additional pressure on her remaining leg and massage was recommended for my nerve recovery also.

I have managed to capture her phantom limb scratching on video a few times now. What I find most interesting is that she leans her whole head and body into each other as if she can actually “feel” something, and often she’ll stand up when she’s done and shake her head in a way that suggests she’s managed to satisfy the itch!

Seres demonstrates her phantom limb- Click for video

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So we now are the proud owners of a cat who has one of the most expensive missing limbs imaginable, and she imagines it!

For more pictures and regular updates please follow Seres’ future adventures on instagram @three_quarter_kitty and twitter @3quarterkitkat Instagram- Click here

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Misophonia and Me

Misophonia is a term (first coined in 2003 by Pawel J. Jastreboff, Margaret M. Jastreboff 1) given to describe a relatively unexplored condition that causes a person to experience an involuntary fight of flight reaction to innocuous repetitive, unpredictable, sounds and in some cases small repetitive movements. This immediate autonomic arousal is described by those with the condition as being akin to intense anger, panic and anxiety. Often it affects their ability to complete every day tasks and stops them from engaging in normal and healthy social interactions. (Edelstein et al. 20132) The types of sound that most typically ‘trigger’ this reaction in misophonic patients are eating sounds, breathing sounds, nasal and sniffing sounds, coughing, tapping, clicking and whistling or humming.

Due to the nature of these ‘trigger’ sounds, it is extremely difficult for a person with misophonia to avoid coming in to contact with them in their every day life. As such they might withdraw from social activities, eat in isolation, avoid public transport and face difficulties in their work place.

It is not conjecture to suppose that people who suffer with this condition over a number of years may begin to develop other psychological issues ranging from social anxiety disorder to depression, although further research would be needed to verify this suggestion.

There currently exist only two peer reviewed papers that focus on this condition. The first was published in January this year by a group of Dutch researchers who’s area of expertise was OCD and other psychiatric disorders. They outline the condition based on 42 participants who were referred to or got in contact with their clinic. (Schro, Vulink & Denys, 2013 3.)

They propose that the condition be treated as a discrete psychiatric disorder as it has unique qualities, which mean that none of the symptoms of misophonia can be classified in the current DSM-IV (DSM-V) or ICD-10 systems. In their paper they also outline a diagnostic criteria that might be implemented in the future to help with diagnosis and encourage further research.

Whilst we welcome this study and it’s identification of Misophonia as a separate condition that does not share it’s qualities with other more readily diagnosed disorders, it should be noted that the focus on the condition being psychiatric does not mean that it has not got a neurological cause.

The more recent study by Edelstein et al. 20132, which I refer too most often as ‘San Diego’ paper, can be seen to be a more neurological and physiological investigation. In this study they looked at misophonia with comparisons to another neurological phenomena called ‘synethesia’, which is a condition where a certain stimulus, either visual or auditory causes an incongruent sensory reaction from what is normally expected from such inputs. For a basic example synesthetes might see a color when they hear a particular word or see a certain number.  The suggestion being that the sensory misdirection present in synethesia might be comparable to that in misophonia. They were able to identify statistically significant differences in stress responses (measured by SCR, skin conductivity response, a bit like a lie detector test)  between misophonic patients, synesthetes and ‘normal’ control subjects in their physiological reaction to trigger sounds and visual triggers. Importantly this means that they have provided the first evidence to support the severity of the condition beyond the anecdotal evidence that already exists. (For more details please find a link to their study at the end of this post).

Whilst it is very important to aknowledge how great it is that this work is being conducted and that misophonia is slowing gaining recognition in the scientific community, what remains a concern to me is that the anecdotal evidence suggests that this condition is not very responsive to popular treatment methods such as CBT, and in some cases the has caused peoples reactions to become more intense and even increases the number of ‘trigger’ sounds. Often people are being prescribed anti anxiety drugs to help combat the response to triggers but these also seem to be having limited success amongst patients who have sought help. The only methods of ‘treating’ the condition that seem to offer relief come from avoidance techniques, or using headphones to block out the sounds, which ultimately might lead to more damage than good. Internet forums are a buzz with information and reports of less well known therapies being of some help to them, such as neuro-feedback and schema retraining. Time and greater levels of research will be needed to verify or find suitable treatment options.

I think at this point it is import to be clear about exactly how severe these reactions are so that there is not the common misunderstanding that those with misophonia simply find these sounds ‘annoying’. I can not think of a feeling that is further removed from ‘annoyance’ as my reaction to these ‘trigger’ sounds is. It’s fair to say that everyone gets irritated to some degree with a ‘noisy’ eater or that person at the cinema who just won’t stop rustling their popcorn as they moronically shovel it into their mouths without taking their eyes off the screen ahead. Misophonia is not that feeling.

A misophonic reaction is so strong and so instantaneous that, honestly, the only other emotion I can compare it to is that moment when someone tells you that a person you love has died. That gut wrenching, heart stopping, shortness of breath feeling, that you can not possibly control or stop from occurring. This is how intense the reaction to hearing a trigger sound can be. However, instead of that hollow grief that comes from such news, it is instead a burning anger, a completely alien level of rage. I am not a violent person (if you exclude the tantrums I had as a very small child) and I would never dream of hitting a person or causing them harm, but a trigger will make me want to lash out, my cognitive processes go from perfectly normal to phrases such as ‘I wish you’d just die’ or ‘why the hell are you making that noise, I’ll make you stop’… along with some often very violent imagery. There is nothing normal about this at all, and I can’t express enough how this is not just ‘being annoyed’ at someone eating rudely or loudly. Quite often the way in which a person is eating or the volume level has no significant impact at all on whether a trigger is better or worse. Though I would never actually hit anyone, I have to employ ‘coping’ mechanisms to deal with hearing these noises. My first response is often to try to leave the room if I can (this can lead to some very annoying train journeys where I have been known to move carriages 7 times in a half hour journey, or being incredibly rude at family dinners – Christmas time being the worst of course). Or I have to mimic the person eating, pretending to chew when they do (but this often just makes me look a little crazy so over the years I have tried to stop doing this if I can help it). I have tried humming to myself, or clicking my fingers to try and distract myself from the noise. But inevitably the aftermath of any of these attempts to lessen my reaction of ‘fight or flight’ is of course immense feelings of shame, guilt and embarrassment.

The reactions individuals report tend to be more intense depending on their physical situation and emotional state. For example being in an enclosed space, such as on public transport or a lift where there is no easy escape heightens the reaction. (This makes sense if considering the reaction to be fight or flight). Unsurprisingly being stressed or tired also is reported to make the reactions worse, either more intense or more likely to happen.

What concerns me most of all is that it appears that over time trigger sounds spread. Looking at the hundreds of posts written on the facebook site people say their reactions typically starting between the ages of 8-13, and initially were isolated to one particular individual being a ‘trigger’ (usually a close family member) before becoming more widely applied to close friends, extended family, work colleagues and then strangers. They might also begin as being eating sounds or breathing sounds but overtime it appears many people find their triggers extend to noises such as keyboards typing, pens clicking, packets rustling, dogs barking and whistling. There are people who have had misophonia for over 40 years and yet no one has ever been able to help them with their condition.

What is clear is that this is a condition that affects hundreds of people, social media sites and support groups are seen to have over 1000 members and the UK misophonia website has had over 100,000 hits. Little is understood about it’s origin, prognosis or treatment options and there is essentially a whole condition waiting to be uncovered.

It is my ambition to be the person to study this condition, to uncover it’s secrets and hopefully work towards finding a successful treatment plan for those who have suffered with it for longer than I have. If the doctors can’t help me, I will help myself and all the others too.

 

1.Pawel J. Jastreboff, Margaret M. Jastreboff (April 2003). “Tinnitis retraining therapy for patients with tinnitus and decreased sound tolerance”. Otolaryngol Clin. 36(2): 321–36.

2. Misophonia:physiological investigations and case descriptions Miren Edelstein, David Brang, Romke Rouw and Vilayanur S.Ramachandran Frontiers in Human Neuroscience June 2013 | Volume 7 | Article 296

3. Misophonia: Diagnostic Criteria for a New Psychiatric Disorder. Arjan Schroder, Nienke Vulink and Damiaan Deny* PLOS ONE | January 2013 | Volume 8 | Issue 1 | e54706

If you are a researcher who is particularly interested in this topic I would be very keen to hear from you. I have a background in Psychology and a MSc in Neuroscience and want to study misophonia as part of a PhD project, preferably starting in 2014 and based in the UK. I am currently actively seeking a potential supervisor for such a project and can be contacted at oggie114@hotmail.com

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Learning to write with cerebral palsy and learning difficulties

My sister has cerebral palsy and additional brain damage (mostly to her right hemisphere) that has caused her to have severe learning difficulties and epilepsy. When she was adopted as a baby my mom was told she never learn to speak, let alone read or write. As she grew older the hours of speech therapy definitely paid off, and at 21 she can have as coherent a conversation as anyone (although she does sometimes need to repeat herself to people who don’t know her so well). However, whilst she has always been very chatty, her ability to read and write has wavered. I remember us being at school together (she is only a year below me in school years) and she’d be sent home with reading books aimed at 5 year olds when she was around 9 years old. It would seem as though she was learning to read quite well after you’d gone through the book a few times. She seemed able to read entire story books like Bif and Chip, if someone had gone through the book with her first, but it soon transpired that if you covered up the pictures, or made her attempt to read a randomly chosen page out of order then she was stumped. She’d memorise the books and regurgitate verbatim what someone had read out to her previously! I think this is a ‘trick’ common amongst young children learning to read, particularly because those story books are boring and repetitive.

For as long as I can remember her idea of handwritten words resembled something a 2 or 3 year old might scrawl when pretending to do “grown up writing”. A series of p’s that looked a bit like this:

With the arrival of a computer in our house it must be said that her ability to write single words did begin to develop but again she was merely mimicking what someone had shown her. It wasn’t uncommon to find a Word document saved under a name like ‘fsddh’ and open it to be faced with a list of ‘words’ such as Dog, Bog, Mog, Fog, Sog, Rog. It was a while before she began to put words together into sentences. The first one she wrote with no supervision is annoyingly burned into my memory.

It simply read: “ Olana is a fat pig”

She’d gone around the house asking different people to write down a single word from the sentence so she could copy it and put it together as a surprise.

Reading and writing has always been a part of her education, although I’d say it was never the main focus. Basic numeracy, social and ‘life’ skills were possibly the more important aspects, once she’d mastered writing her own name by hand. She still struggles with counting money but is more than capable of using a calculator for difficult sums if she needs to, she can also read time quite accurately these days.

In the past two years something rather different has happened when it comes to writing. She is now twenty one, and lives full time at an independent living centre for disabled adults, where she attends many different classes including numeracy and literacy lessons which are taught as an outreach class through the local college. In these she is slowly learning to put together her own words for the first time ever.  I think one of the most useful things she has done in conjunction with these lessons is to have joined facebook. It’s turned out to be a perfect medium for her to practice putting together full sentences. The last part of this post will be made up of direct quotes from her posts and private messages she has sent me. As you will see it is almost as if she has developed her own way of writing, whilst it may not be correct in terms of spelling and punctuation most of the time, it is still readable to those who know what to look for.

Here is the first message she ever sent:

August 2009

i ded not no nat d es on face book now

This isn’t too hard to understand if read aloud as if phonetically, it says ‘I did not know that D is on facebook now’. (D is our brother). The problem with reading out loud as if phonetically is that due to her cerebral palsy she doesn’t always pronounce words correctly, so she often spells them the way she says them, not as how they ‘should’ be said. For example a Remote Control is called a ‘remoke’ in our house.

I’ve tried looking at theories of language to find comparisons between the way my sister writes and development of reading skills but to very little avail. I have noticed that when she talks she often falls into the trap of over generalising a rule to words that are not regular. So that she will say things like ‘we drived home’ instead of ‘drove’, which is something younger children only begin to do once they start learning to read and write at school, but never did previously.

There are certain consistencies in my sisters use of language when writing that we’ve learnt to interpret (and although we have tried to correct her on these they have remained). Examples of these are things like always writing ‘Pes’ instead of ‘Please’, which makes some sense if you hear how she pronounces please in speech. The most persistent and confusing of all however is her use of  ‘ec’ instead of ‘ing’, so ‘going’ is always ‘goec’.

September 2009

i am goec to bed naw can i toc to u at 11pm pes

(I am going to bed now can I talk to you at 11pm please)

I’ve tried to work out why ‘ec’ has replaced ‘ing’ in her mind, some ideas are that when she pronounces ‘ing’ she is making a ‘cah’ or ‘kuh’ sound at the end so puts a ‘c’, or that on a keyboard capital G and C look quite similar so she’s confusing the two letters. It could even be a bit of both I suppose. If it is that she’s confusing G and C on a keyboard you would expect this confusion to occur in other words where g is replaced with c. I have found a few examples of this:

September 2009

can you pes gum up

(can you please come up)

October 2009

i am up set be gos alex hos goc naw

(I am upset because alex has gone now)

It seems that she will replace G’s with C’s when the G occurs in the middle or ending of the word, and will replace C’s with G’s if the word begins with a C. However, she does know that ‘Ch’ makes a different sound to a C on its own as is demonstrated in this example:

October 2009

i am sore fo chuteg a wa

(I am sorry for shouting at you)

Here she doesn’t stick with her usual ‘ec’ to replace ‘ing’ either. She’s made shouting into two distinct sounds created from ‘chu’ and ‘teg’, usually she never misspells ‘you’. Words ending in ‘y’ often become words ending in ‘e’ or ‘i’.. so Happy will be ‘hape’. I believe this is a common error made by young children when learning to write.

My favourite message from her was sent very early on and reads:

olana can u sop tacec the nec at of me i dot lic et won u sa i cut rit pes

(Olana can you stop taking the Mick out of me, I don’t like it when you say I can’t write, please)

I know it’s wrong that this made me laugh, but I never really took the Mick out of her (promise!)This referred to a private message she’d sent to our Mom asking her if she could get a new computer but she didn’t write the word ‘computer’ she instead wrote ‘cum pot’!  In all seriousness though, I think it’s fantastic that she’s doing as well as she is despite having suffered such severe brain damage, she continues to exceed ours and the medical professionals expectations daily.

Her ability to put together sentences is growing, although the words aren’t spelt all that well they are usually easy enough to decipher. We went to see Tim Minchin perform in December last year and her status became ‘I lic tim minchin’ (lic is like, although she probably wouldn’t say no to licking him either!) She also wrote this message on his facebook fan page:

faku tim fo a gut cho nysnat i am gated theat i cud not met you i wech you cyt ta ta am fran can you dot

(Thank you Tim for a good show last night, I am gutted that I could not meet you. I wish you could *something I don’t understand* can you do)

As you can see sometimes the messages aren’t always all too clear, and I still struggle to understand everything she writes. The problem we then have is she can’t read her own words back, whilst she has no trouble constructing her little sentences if you ask her to read what she has written say a day later she won’t be able to tell you.  Such as ‘i cum sot paec tec toc doc’ My best guess with this one is something like ‘I can’t stop playing tic tock doc?’ but I’ve no idea really.

She is also getting better at writing by hand, although her letters can still be quite big, she now spaces words out a lot clearer and will attempt capital letters where necessary.

The oddest thing about all of this I find is her comparably low ability to read despite her continued  progress in her writing skills. Her brain-damaged being mostly right-sided is consistent with the suggestion that language and writing abilities are predominantly processes controlled by the left hemisphere. However, reading is also thought to be dominantly a right-sided processes, the strangest thing here is her inability to not only read ‘proper’ sentences but also failing to read back things that she herself has written. I hope that she can continue to develop her literacy abilities as she gets older, although at 21 I’m not sure how far she can progress or what is already set in stone, I guess only time will tell but for now she’s doing just fine.

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On being a ‘Young Carer’

The BBC are running a special report in November on Young Carers in the UK and have asked people with experiences with caring to share these with them. I shared mine in three parts, as I wrote too much. It’s a sort of conscious stream of thoughts, feelings and memories so I apologise for the poor style but if you are interested here is what I wrote to them:

My name is Olana Tansley-Hancock, and was a young carer from the age of three. I am now 23, and although no longer living at home having been at University for the past four years I will never stop being a carer for my family.

Unlike most other young carers I knew when I was growing up, I had the unusual circumstance of all three of my family members having disabilities and I was the only ‘normal’ one. My mom has grand mal epilepsy, and a degenerative spinal condition, my big brother is also epileptic and in recent years has unfortunately been diagnosed with biological depression also. My little sister, Roxanne (who is adopted) has cerebral palsy, epilepsy and severe learning difficulties. At the time of her adoption I was only 3, my brothers epilepsy had just been diagnosed and was uncontrolled and my parents were still together. However, my father had begun showing signs of bipolar disorder. When I was five my parents divorced. My mom encouraged me to be involved with Roxanne’s physiotherapy and care as it was really the only time mom got to spend with me.

We moved to a new house when I was 5, and then it was just me, Mom, Dietrich and Roxy. Over the years Dietrich’s epilepsy got more and more under control. Although, I do remember some scary moments when he was having medication changes, like the time he lost his memory and tried to strangle me cause he thought I was a stranger. Or the time he got electrocuted by the electric fence in the nearby fields and he had multiple seizures so severe he had a heart attack. I was walking with him in the field on my own at the time, and had to get him home semiconscious. I was only 9. I remember watching my mom performing CPR, and apologising to the ambulance men for ‘wasting their time’ cause normally when he’d fit, a neighbour would drive Mom and D to the hospital and the ambulance man said ‘if you’d waited for a lift from a neighbour your son would have been dead’.

Mom’s fitting used to scare us all too, but we got used to the routine we had to follow when they did happen. We knew to phone the ambulance, to phone her friend to come over, and to have pain killers and a glass of water ready for when she’d come round. I knew where the medications were in the house, I knew exactly how much medication and what medication everyone of my family took to tell the ambulance men when they arrived. I knew how to put my mom, brother and sister into the recovery position, I knew how to insert rectal diazepam, I knew how to do my laundry, I knew how to cook basic dinners, I knew how to take money out of a cash machine and pay for electricity and gas, I knew how to put the coffee on in the morning for mom, I knew all of these things and more and I was only 7.

I never once envied my other ‘normal friends’ with their ‘normal families’ because to me there was nothing abnormal about my family and I still don’t see them as different.

So we didn’t have yearly family holidays off to faraway places, but instead we went on trips to London to the hospital, or to care centres and we’d always get a Burger King on the way home, and being from the Isle of Wight we didn’t have a Burger King ever! We did go on two family holidays in my childhood, both to the same place in Scotland. I have very fond memories of snow, skiing and squirrels. I believe these holidays were paid for by a charity organisation, as we stayed at a cottage that was specially equipped for the disabled.

My sister had respite care every other weekend, and my Brother got a place at a very good boarding school because he was super smart! So from the age of 11 he only came home for holidays. My sister also a few years later got a place at a specialist school for disabled children on the Mainland and she was there from the age of 11. At that time I was 12, and in a drama school on the Isle of Wight.  Just two years later my mom’s back went. She has since had 4 operations on her back and undergone many complications due to these. Whilst it was I suppose ‘easier’ once Roxy and Dietrich went to boarding school, my mom’s disability got progressively worse and worse and I was the only one left at home to look after her.  At the age of 11 I was introduced to the Young Carers Project on the Island and they’d take me out on the odd weekend to go horse riding or to the cinema.

When I was 14 I was at a private school on a scholarship on the island, my mom cleaned at the school to pay for some of my tuition that wasn’t covered by the scholarship. She did this until she ended up in hospital because of her back. During my GCSE year my sister underwent an experimental operation to readdress the weight distribution through her feet, this was initially thought to have been unsuccessful and we were told she’d never walk again. She defied the odds however after being in plaster casts for 12 weeks and spending her Easter holiday at St. Mary’s Hospital on the Isle of Wight because we didn’t have the space for her at home in a wheelchair.

I was meant to take all 10 of my GCSEs a year early but due to my caring responsibilities I fell ill in the year before my exams, I missed a crucial 3 weeks of school through exhaustion and it was decided that I should only sit 5 GCSEs early. I still achieved grades A*-B for these exams. I then changed schools for the 7th and last time, and went to the local state school. Here I was able to take two AS levels early along with the rest of my GCSEs. Throughout all three years of being at this school my mom was in and out of hospital. I was running the house and doing to cooking, cleaning and shopping. A charity called ‘Crossroads, now Two Counties’ on the island would pick me up once a week and drive me to Tesco to do the weekly shop. I’d then be the one to do most the cooking, and would fit in my school work around everything else. I finished my high school education with Ten A*-B grade GCSEs, Four A-C grade A levels, and One B grade As Level.  I always tell my friends/teachers that being a carer gave me an unfair advantage at school when they all saw it as a disadvantage, but I was so determined to focus on something other than my family that I poured about 70% of my energies into school, the other 30% went into Irish Dancing. I had been dancing since turning 14 and it was the only thing that made me forget absolutely everything about home life. When I was dancing nothing else mattered, nothing else existed, and I was going to be good at it.

I got a place at University and chose to go to Royal Holloway as mom had been getting stronger and I felt being only an hours’ drive from Portsmouth was close enough and yet far enough away for me to feel safe about being away from home but also so that mom could regain her independence. I’d taken so much of it away over the years by doing everything for her that had I been only in Portsmouth or Southampton for Uni I really do believe neither Mom or I would have found out who we were over these past four years, relying on each other as we had done for so long.

Over the Christmas Holiday of my second year of uni my mom fell down the stairs, knocking the bone marrow cage out of place that was surrounding the base of her spine. She developed septicaemia and the infection was so aggressive that she was air lifted to Southampton General Hospital for an emergency operation on New Years Eve. I remember the phone call from the nurse at the hospital, she said ‘your Mom says to tell you to carry on with your new years plans, go out and have fun, and she’ll call you in the morning’. None of us realised how serious her condition was until the weeks that followed. She could have died that night, but thanks to the hard work and amazing dedication of the team at Southampton she was okay. She spent the next month in Southampton and I had to put my studies on hold. By mid January I’d worked out a plan that involved travelling up to uni Monday-Wednesday for essential lectures, coming home via Southampton hospital to be with mom’s dogs Wednesday evening to Sunday, the neighbours looked after the dogs on the days I was away. I didn’t know at the time but this sort of thing is called ‘extenuating circumstances’ in university speak, I didn’t ask for any extra considerations for any of the assignments I handed in during or after this time as in my opinion I wasn’t the one in hospital so why did I need special considerations.  I still came away from university with a high 2:1 in Psychology. I have spent this past year studying a MSc in Human Neuroscience and hope to do a PhD in a year or so. My interest in neuroscience comes directly from my family, all of them have disabilities that are a direct result of atypical brain functioning. It always comes back to that; the brain. I want to do more than be a physical help to my family, I want to help on a larger scale now, help fix the original problem so to speak.

The support I have had throughout my life has come from my family, they give and they take like any family. Disability has nothing to do with it. The young carers did help, but dancing helped more, finding something that was just mine was the most important thing for me. Other outside help didn’t really come into it, for example I only found out this year that as a carer you should get a free ticket at the cinema when accompanying you’re disabled sister or mom or brother. How has it taken 23 years for someone to tell me this information? Despite these silly little things, I do not feel like I have had a ‘disadvantaged’ childhood any more than someone who comes from a poorer background would have had. There is nothing ‘unusual’ about my family and I would not change a single thing about them, well maybe one thing, it’d be nice if I hadn’t been born ginger (I hear there’s no cure for that).

Anyway, back to the present day, my brother is back living at home, running his own business with help from mom, who is continuing to get stronger despite having a degenerative illness. My sister is at a development centre learning independent living skills and improving herself all the time. I visit her at least every two weeks and we hang out like any sisters in their 20s would (maybe with a little less alcohol and clubbing but still we have our own fun).

I will always care for my family, you don’t stop being a carer just because you no longer fit under the banner of ‘young carer’.  Instead you’re simply a ‘carer’, you’re under the same banner as the husbands and wives who care for their spouses who had age related illness, or the children of elderly parents caring for them, there is no longer a distinction. To be a carer at 20 is a lot tougher in terms of outside awareness than being a carer at 8 or 18.  My family are my inspiration, motivation and happiness, and I love them.

Hope that’s given some insight into things, I do get that my situation is a little unique. I can’t say I met many ‘young carers’ at University.

Hope to continue to try to understand the brain and go on to fix a few things!

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