Wednesday, 3 January 2018

The Great Cane Debate

As part of RNIB’s How I See campaign, they released a video that debates whether the cane, (a mobility aid used by visually impaired people) should be the standard black and white, (black handle with white body) or whether it is ok for the cane to be colourful. You can view the video here.

There is a fear that if the cane is not the standard black and white then the public may get confused with regards to what it symbolises. In my opinion, I believe it is more than acceptable for a visually impaired person to use whatever colour cane they wish as long as it is being used in the correct manner. Just because blind people can’t see should they be subjected to a colourless black and white world? People without a visual impairment use cars and other means of transport to get around. If a lorry is white or red, we still know it is a lorry and if a person is using a wheelchair is it important that it has blue or pink rims? No. Other people are allowed to customise their mobility aids, so why can’t we?

To emphasise my argument, I thought I would share my cane journey with you. I was first introduced to a cane at about the age of twelve. I had no interest in using an object that screamed ‘I have a visual impairment’. In an act of rebellion I remember storming out of my house and walked to a friend’s without using my cane. Worried for my safety my dad jumped in his car and curb-crawled behind me, which prompted a member of the public to stop me and alert me to the fact that a man was following me! After that incident, I reluctantly agreed to use my cane outside of school. When I was around my friends I wouldn’t use it properly at all and would often use it as a comical prop. In particular I recall pretending that my cane was like a dog lead and I was being dragged along by said dog much to my friends amusement. I had to try and make the cane cool.

By the age of sixteen my sight had deteriorated to a level where for my safety I was encouraged to use my cane at school. So I began using it at the start of sixth form, which at my school was also the year you no longer wore school uniform. I hated sticking out like a sore thumb with my cane and as Christmas approached I decided if everyone was going to be staring at me, then I would give them something to stare at. I purchased some white tinsel and wrapped it around my cane from head to foot. It helped my confidence when I received positive feedback about something I despised using.

By the age of nineteen I had lost any useful vision, so could no longer distinguish colours or shapes. I guess out of rebellion to losing my colour vision I ordered a pink cane (black handle with pink body). It had to be imported from Canada. I wouldn’t call myself a trend setter, but I was one of the first people to start using a coloured cane in Britain. For me the pink represented that despite being blind I still cared for coloured things in the same way I did as when I had vision. Not once when I used my pink cane did someone not know what it represented. It was also useful when with other visually impaired people because I knew which cane was mine!

A couple of years ago I changed my cane to an accented one instead. So, my current cane has a blue handle and white body. This is because I feel I have matured and the new style has more of a professional appearance. All pink is cool and fun, but a blue and white combination spells sophistication. It still offers a sense of individuality.

Customising my cane over the years has helped me to accept my visual impairment. We are all individuals and should be allowed to express ourselves in whatever civilised way we choose. That’s how I see it anyway!

Sunday, 31 December 2017

Another Year

Wow, it is New Year’s Eve once again. This year’s Disney pyjamas, The Cheshire Cat from Alice in Wonderland. Famous for his toothy grin the Cheshire Cat has the best approach to life. Smile. Even when times are tough make sure you find something to smile about. It is so easy to be swallowed up by grief and sadness, but I promise if you dig deep there will be something in your life worth a smirk.

2017
I am one of those people who dislikes odd numbers. There is something uncomfortable about them. So, it isn’t really surprising that 2017 threw some horridness at me. Whilst warming up for a race in June, I fractured my knee. Six months on and I still can’t run up the stairs pain free never mind sprint or even jog. For three months I couldn’t even walk without limping. Sport dictated my life. Monday track, Tuesday gym, Wednesday swim, Thursday track, Friday rest, Saturday gym, Sunday rest. In a split second my routine was lost, I felt lost and I have lost a lot of weight too. Goodbye muscles, farewell healthy heartrate. It may be difficult for people to comprehend, but without sport life for me is highly depressing. It gives me structure and constant targets to smash. The adrenaline rush is euphoric. I long to get that back.

Calvin, my beloved Guide Dog and bestest friend. I don’t yet have children, although the unconditional love I feel for him must equal that of parent and child. Unknowingly to him, he has caused me to shed a thousand tears this month alone. Guide Dogs visited us just before Christmas and the dreaded R word was brought up even before they saw him work due to him turning ten in March. Whilst it was agreed that I won’t go back on the list immediately, I will be back on it before his birthday. In addition they noticed a lump on his left paw. Calvin is riddled with fatty lumps, but this one is different. He had an x-ray on Thursday that revealed he has arthritis in his left wrist. The lump is not bone related, it is soft tissue related. It isn’t big enough to do a biopsy to check if it is anything more sinister. He has some anti-inflammatory medicine to see if that makes a difference. Calvin was so poorly after the anaesthetic, it was horrible to watch him suffer. I have never ever ever in the eight years of knowing him seen him so ill. All I want for him is to be healthy and happy though as he ages this is inevitably impossible. I am seriously not sure I can mentally handle having another Guide Dog.

Right, now on to the cheerful stuff. This year has been painful, but it has also been magical. I met a boy (gush), holidayed in Cape Verde and Dubai, saw so many fantastic shows at the theatre, witnessed Harry Kane score live at Wembley enabling England to qualify for the World Cup, went to the Olympic Park to watch the athletics World Championships, ate strawberries and cream at Wimbledon, sprinted my way to 60m and 100m PBs, danced the night away at my friend’s wedding, sang my heart out at Ed Sheeran and Steps concerts and later I’m going to try and not break any bones ice-skating. That is just the stuff I can remember! So yeah, I have had my dark and lonely days, but I have also had some pretty amazing ones too.

2018
Yay an even number. No doubt I will have some hard times, but equally I already have so many things to look forward to. Paris in January, Harry Potter A History of Magic Exhibition in February, Matilda the Musical in March, An Officer and a Gentleman musical in April, Amsterdam in May, my 30th birthday in July and who knows what else. Hopefully I can get back to my athletic self and if Calvin is going to retire, here’s hoping it will be on happy and healthy grounds.

I adore writing this blog and only wish I updated it more often. There are so many topics I’m itching to write about, but find myself too busy enjoying life to get a chance. 2018 will be my tenth year of blogging. To those who have read my ramblings from the start thanks so much for sticking with me. To those who have stumbled upon my blog more recently thanks for taking the time to share in my life.

To all my readers, may 2018 bring you a year of smiles.

Sunday, 3 December 2017

A Day To Celebrate?

There is a day, week and month for everything these days. From National Cup Cake Day to Autism Awareness Week and Movember. All have the same aim of celebrating and/or promoting a particular cause. Today is International Day of Persons with Disabilities. However, I’m not really feeling in the mood to celebrate my blindness. Whilst I accept my disability, I wouldn’t say I’m proud to be blind. It isn’t an attribute I have chosen, it is one that was written in my DNA. In the same way I’m not one of those people who is proud to be female or Asian. It is just who I am. Nevertheless, I am proud of some of the things I have achieved despite my disability. Gaining a First Class degree in English Language and Literature and representing England at the Commonwealth Games taking the top spots.

I harp on about it a lot, but us disabled Brits are so lucky to live in such a disability friendly country. On this day of raising awareness of people with disabilities, I would like to remind people that not all disabled people are as privileged. Even in this day and age, there are millions of disabled people who are hidden away by their families. Then there are the ones who literally can’t leave their homes because their country is inaccessible.

Whilst today is my day, I would like to take the opportunity to thank my Guide Dog Calvin for his 8 years of service to me, the government for supporting me financially, my employer for giving me a job and my friends and family who all allow me to live an independent and fulfilling life. Thanks to them living with a disability really isn’t so bad.

Friday, 10 November 2017

Disability and Dignity

As part of my job I always ask people ‘how is your dignity maintained’? I often wonder as a disabled person if it is truly possible to maintain your dignity and earn respect. Of course, I can only speak from a visually impaired perspective. It seems to be the era to break the silence and end the awkward hence I thought I would share some of my less dignified daily experiences. The following feel like a taboo to talk about yet have most likely happened to the majority of visually impaired people.

Let’s start off with one of my daily struggles, needing the toilet! We all need to empty our bladders, but it is one of the most frustrating parts of being human. At school I would not use the toilet in a school day unless the pain of crossing my legs reached its ultimate limit. Although I was partially sighted in my school days I avoided the little girls room because it was always filled with the smokers at break and lunchtimes who scowled at you as you entered. Once in the bathroom the next hurdle was trying to establish which cubicle was free. Since the cubicle doors and the frames were all a pale grey I didn’t have the depth perception to see if a door was ajar or locked. The only way I could locate a vacant cubicle was by gently pushing on each door to see if it opened, an action I really didn’t want to perform in front of an audience. So, it was just easier to not go to the toilet.

I would love to say now that I’m nearly thirty that I no longer worry about needing to spend a penny. However, I think it is going to be like one of those poos that no matter how many times you flush they just keep floating back to the surface! Earlier this year I went on a first date. Before meeting the stranger I ensured that my train assistance guided me to the ladies prior to helping me to the exit. Whilst it was an amazing day that I will never forget, I will always remember being too afraid of asking him to guide me to the toilet. It was on the tip of my tongue on numerous occasions yet I couldn’t face the humiliation of publically announcing that I needed to urinate. Thankfully, I plucked up the courage on our second date after having some serious words with myself.

When you are in an unfamiliar environment there is no way you can avoid asking someone where the bathroom is. On the bright side once you are inside at least nobody is watching when you casually bounce off the walls in search of the loo or when you are wildly waving your hands around in order to find the flush. Last month I was on a busy train to London on the way to see Harry Potter and the Cursed Child with audio description which I highly recommend watching if you can get tickets. Anyway, I’m sure many people will agree that whoever invented button operated toilets for trains needs to be shot! Routinely, I will always use the toilet before boarding a train, knowing that it will be very difficult to do so once travelling. Unfortunately, I arrived at the station with only three minutes to spare before my train departed. Aware of my need, the train assistance sat me directly opposite the toilet. As the train trundled along the tracks I listened intently to the toilet door sliding open and close, but I couldn’t actually work out when it was available. There was a nice old man next to me who had already engaged me in conversation as soon as I sat down, a personal pet hate of mine when travelling on public transport, though on this occasion worked to my advantage as it was easier to ask him if he knew if the toilet was in use. This was obviously code for ‘please help me, I’m busting’!

The nice old man offered to show me where the open, close and lock buttons were in the toilet, right after he had bellowed to the carriage to clear the way so I could make the two steps over to the facility! With a tight smile I thanked the gentleman for his help and frantically jabbed on the close door button so I could die of embarrassment in private. To my horror the door wouldn’t close, which resulted in the entire carriage jumping to my aid. After all buttons had been pressed by various people with no success, the toilet calmly flashed an ‘out of order’ sign, which meant I had to sheepishly return to my seat and cross my legs until Euston.

A skill you acquire when you are blind is the ability to recognise people’s voices. Generally, I’m quite good at this, although admittedly I can’t put a name to every one of my 24 Brownies voices. When you are in a situation like going to a friend’s house and you know who is going to be there it makes it easier to distinguish who is who. The nightmare occurs when you are out in public and a voice is out of context. I was out shopping recently and a random voice called my name. Totally on auto pilot I replied ‘hey’ in a sociable tone. They then proceeded to come over and said ‘it’s me’! We began exchanging pleasantries whilst my brain went into overdrive trying to label the anonymous voice. It only took a few seconds for me to properly realise who I was speaking to, but my friend fully expected me to know who she was even though I hadn’t seen her for over a year!

Voices are sneaky things, they move without warning. You can be in a full blown conversation with someone then they will suddenly reply from over your shoulder when you were certain the person was still standing in front of you. Or sometimes you find yourself asking the atmosphere if they had a good holiday? A feeling of bemusement sets in until you realise that there is nobody there to respond, which makes you wonder if apparition is real.

Another issue with voices is that they don’t always tell you that they are speaking to you. The consequences of this can be fatal since the voice either concludes that you are being rude for not answering or they believe you are disrespectful for talking in someone else’s place. Once when I was waiting for a train at my local station a lady may have or may not have said hello to me. Small talk ensued until I clocked that the lady was in fact on the phone and therefore not conversing with me at all even though I was politely replying and reacting to all of her questions. Yes I felt immensely stupid and the train couldn’t come fast enough!

Social situations can be tough when you are blind and the one thing I’m awful at is greetings. Do you shake hands? Hug? Kiss? If kiss, is it just one on the cheek or one on each cheek? The best way to deal with this is by taking the initiative first, but I always forget. The amount of times someone has put their hand out waiting for me to shake it and I have unconsciously blanked them is unreal. If I’m with someone they will grab my wrist and thrust my hand into the other person’s hand whilst I psychologically face palm. I never learn. Then there are the times when someone decides to go in for a hug when you are not expecting it. The hugger inadvertently clamps down your arms and you end up giving the other person an awkward pat on the back since you can’t physically lift up your arms to return the gesture properly. It just isn’t cool. Let’s not forget the kissing dance, both of you turn your head the same way and disaster strikes as you brush each other’s lips instead of your cheeks!

Finally, there is the tricky task of eating elegantly in public. At home all of my knives have grooves on them so before I eat I swipe the knife with my fork and can hear if my knife is the right way around before I cut something. However, at other people’s houses and in restaurants not all knives have this feature meaning I might try and slice my meal with the knife upside down. Forks are fiddly pieces of equipment too. You stab a chip with the prongs, but when the fork reaches your mouth you find yourself taking a bite of pure metal as the chip failed to survive the trip from plate to lips. Sometimes, when you eat what actually manages to reach your lips can be somewhat of a surprise. For instance the food item may be larger than you anticipated or you might discover that you have just taken a chunk out of a lemon or lettuce leaf. In these situations you have to do your best to style out the munching as much as you want to either spit the food back on to the plate or contort your face into a disgusted expression. One time a friend offered me some nuts at his house and I eagerly popped one into my mouth. I exclaimed ‘these are a little hard’ and he burst out laughing because I hadn’t removed the shell! Whoopsy!

I think that it is pretty evident that maintaining your dignity and functioning as a respectful member of society is practically impossible when you are visually impaired. It can be very easy to get down, feel embarrassed or direct anger towards the public. We could hide away in our homes where we have access to a toilet, can check our caller IDs on our phones to see who is calling and drop food down us unintentionally until our hearts are content. Realistically, social isolation is not the ideal solution. Personally, I believe we just need to adopt a sense of humour, take those cringe worthy moments with a pinch of salt and enjoy living life. Everybody makes mistakes, it is an essential part of being human.


Friday, 20 October 2017

Why?

In life, we ask lots of questions. Why is the sky blue? What came first, the chicken or the egg? If a tree falls in the forest and there is nobody there to hear it, does it still make a noise? Thanks to science we have learnt the answers to many of life’s conundrums. However, sometimes we are just left with multiple theories and it is up to us to choose which we believe, if any. I was and will always be the first female in the world to be diagnosed with Norrie’s Disease. But for as long as I can remember I have asked myself and the professionals why did this happen to me? How can a condition that is only supposed to affect males been passed on to me? Why wasn’t I born totally blind like my male family members with the condition? Over the years I have heard numerous theories, but nobody seemed interested in finding out the real reason other than me.

It has taken over a year of referrals and appointments, but I finally have some answers. It has been a few years now since I came to terms with losing my sight, yet I can honestly say I have never come to terms with having Norrie’s Disease itself. Until now that is. A part of me was convinced that I had a different condition despite my family history and Norrie like symptoms. Whilst I have always claimed to have Norrie’s Disease I have often felt like a fraud when communicating with others about the condition, especially when people have asked how I have it and I never had any firm facts.

Scientifically speaking, female carriers of Norrie’s Disease have a one in four chance of having a child affected by Norrie’s Disease. Technically, if the child is a boy there is a 50% chance that they will present with the condition and if a girl there is a 50% chance that they will be a carrier of the condition. This is because Norrie’s Disease is an X-linked condition. Theoretically, a female should not present with symptoms of the condition as they have two X chromosomes and therefore should activate the Norrie gene on the spare chromosome. Males present with the condition because they only have one X chromosome.

When I began to present with symptoms of Norrie’s Disease at the age of two, I did undergo genetic testing. However, at that time they did not know the location of the Norrie gene nor did they have the ability to test for the reason why I have the condition. Without my knowledge my blood sample was re-tested in 2004 due to the advancements in technology. I only received the results in August at an appointment that I fought tooth and nail for. The tests revealed that I have a mutation on the Norrie gene confirming that I am definitely a carrier of Norrie’s Disease. Although I have always suspected this was the case, it was quite gutting to hear that I could potentially pass Norrie’s Disease on to my children. The results also indicated that I most likely had skewed X inactivation syndrome.

They took more blood on the day from myself and my mum in order to run further tests. I received the results last week, which stated I have significant skewed X inactivation meaning I activated more genes on my maternal X one of course being the mutated Norrie gene. Thus explaining why I have Norrie’s Disease. At some point after conception, females activate genes on their X chromosomes. Normally, they activate approximately 50% on each. For whatever reason, I chose to activate more of my mum’s genes. She has always joked when I was born she thought she had cloned me because my appearance was so alike to hers! Lots of females might have skewed X inactivation, but not know about it since they haven’t activated a faulty gene.

It is so good to have some proper answers. I know it doesn’t change the fact that I have Norrie’s Disease and it can’t bring back my sight. If anything it has unleashed a new can of worms as I know I’m a carrier of the condition and know I am set on having children. Nevertheless, it has given me closure. I can confidently say I have Norrie’s Disease and I now know why.

Wednesday, 26 July 2017

Stress Fracture

Today marks 6 weeks since I injured my knee whilst warming up for a race. An MRI scan showed that I have a stress fracture called osteochondritis dissecans. Mentally and physically the last 6 weeks have been really tough. To go from running faster than I have ever done before to finding it near impossible to walk was a severe shock to the system. 6 weeks on, I am still unable to walk limp free. However, I am on the road to recovery, it is just going to be a very long road. I have begun to do rehab consisting of deep pool non-impact exercises alongside some static non weight bearing exercises on land. I have an appointment with the consultant in 2 weeks time where hopefully my knee has healed enough to start physio treatment.

I have had moments where I have thought I’m never going to be able to walk properly again, never mind run. It is always easy to think the worst. One of the hardest elements has been to watch my muscle mass rapidly slip away. Years of intense training dissolving in front of my eyes. I have literally been losing weight with the lack of exercise.

It goes without saying that my athletics season has been cut short. I only managed a month’s worth of racing before the injury occurred. Nevertheless, I was able to run a PB over 100m, clocking 13.52 seconds in Bedford in May. What is incredibly frustrating is that I ran that time without full speed training. I could have gone much faster this year.

I guess there is no point dwelling on the could have, should have, would have beens. This is the situation that I am facing now and I need to focus on getting back to full health and fitness.

The best moment is not going to be when I start sprinting again, but when the house isolation can end. I am so desperate to put on Calvin’s harness and go for a nice long walk. It is funny I have no problem being blind every day, yet take my mobility away and it feels like the end of the world!

patience is bitter but its fruit is sweet (Jean-Jacques Rousseau)

Monday, 24 July 2017

29

I think there has been some sort of mistake…apparently I am now 29 years old and it feels like my 30th birthday is creeping up on me like the Jaws theme tune! I am dangerously close to entering the fourth decade of my life. What happened to my twenties? What was the plan? I don’t think there ever was one. I have just floated through taking each year as it came. Have I done everything I wanted to in my twenties? I’m not sure. Am I ready to join the thirty club? Certainly not!

I feel that I am constantly talking to people about things I want to do in life, but for one reason or another it doesn’t evolve into anything more than idle chatter. I kind of wish I wasn’t so sensible, I can always find a rational reason for not doing something. I long to live life to the full yet crave routine and stability. Sometimes I am my only barrier to fulfilling my dreams and aspirations.

As I enter the final few hundred days of my twenties I don’t feel like that there is anything more I need to accomplish in this decade of my life. Everything seems quite settled and satisfying at the moment. If I can maintain that until my next birthday, I should be happy. However, I am already compiling a bucket list for my thirties!