Sibling Carers – Unsung Heroes of Life

Sibling Carers – Unsung Heroes of Life

This week is known as ‘carers week’. These are the people who dedicate their everyday lives to ensure the most vulnerable receive a decent, independent life.

Some of these people choose to work in an industry which is grossly underpaid and often unappreciated. Some of those people are adults looking after their aged or sick parents. Some of these people are children looking after their parents who cannot deal with day-to-day life without assistance. A difficult situation for all involved but one that cannot be helped.

And some of these people are Siblings, often children too. They are the most forgotten of all carers because they are not seen as carers at all. People assume they are sitting on the sidelines watching everything happen but that is not always the case. In fact, most often they are fully involved in all aspects of the required care.

As a Duchenne sibling I can tell you I did not hesitate in assisting my parents look after my brother. There was no assumption from my parents that I would nor did they necessarily ask for it. I just did it. I never flinched when my brother asked for help with even the most intrusive of tasks. It was just the way our life was and I am not the only sibling who has done this. SO many siblings will be doing the same thing I did, day in day out without a minute’s consideration for their own wellbeing.

Having to be become a carer at any stage in life is difficult. The emotional and mental strain it puts on everyone can feel overwhelming at times but I am asking today, this week that if you know of anyone who has a disabled sibling especially if they are a child, to give them a little bit of your attention. Ask how they are, what they reading and if they are enjoying school. The most mundane of questions that is asked to THEM instead of everyone around them will make their day.

Siblings of disabled people are young carers too. They are the unsung heroes of the caring world and are the backbone to any family unit so, this week of all weeks, I felt a little bit of appreciation should be put their way.

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A Little Re-assurance from A Duchenne Sibling

A Little Re-assurance from A Duchenne Sibling

For many families living with or alongside Duchenne, there is one inevitable yet traumatic event that everyone has to face but are afraid to acknowledge. I am of course talking about the age limitation Duchenne provides on a person’s life. Knowing someone will die as a younger man is not an easy thing to have to face up to. Growing up it often felt like the Grim Reaper was hovering over my brother’s life from the age of 14, always watching and ready to take him away at any time.

Obviously, I cannot speak on behalf of my brother’s feelings. I cannot tell you if the idea of living a shortened life made if feel angry, sad or indifferent. I know at one point in his life he was certainly ‘assessing’ certain things about himself and had worked out that Duchenne was going to shorten his life.

But despite all of this Darren was never bitter. His incredible attitude towards life meant he accepted the life he had been given and quite simply LIVED. I think my parents and I took on Darren’s heroic attitude and made the most of the situation he and we were living.

That is not to say we dealt with everything well and when living alongside Duchenne, you are almost in this little bubble of situation that no one else can quite understand. I cannot quite explain how it felt when Darren died. I can only speak regarding my feelings but I was not angry or confused. We knew that day was going to come. It was the one certainty of my brother’s condition. But in the months previous Darren had slowed down. He no longer spoke with enthusiasm about the latest sports event of film release. He spent most of his time in bed. He was tired. I think he had had enough. I truly believe my brother decided when it was his time to go. His body may have been broken but his mind was the strongest of anyone I have ever known.

So to anyone living with or alongside Duchenne, to anyone who feels like they are fighting a daily battle and want to rip the horrid condition into a thousand shreds, I just wanted to say “I know what you’re going through”. But life is for living. Try to not dwell on the constant negativity that Duchenne seems to impose on your life and take the glorious specks of sunshine that fight through the clouds. My brother is no longer here. I miss him terribly but if anyone was to talk about him they’ll mention his singing, his disgusting humour and his love of sport. Duchenne did not define who he was. Don’t let it define you too

With lots of love – Hazel, A Duchenne Sibling

World Book Day

It appears to be a day you either love or loath as a parent. World Book Day. A day to celebrate a love of literature and to encourage our mini-humans to get reading.

Unfortunately, this is another day which has been consumed by commercialism. Advertisements appear weeks before selling costumes for as little has £10 an outfit. £10!! That is ridiculous for something they will only wear once. I have a rule (one I am sure many other parents adhere to). If the outfit costs more than the book – do not buy it!

One of the best parts of this event is being creative. If my son asked to be Peter Rabbit I would not buy him the outfit RRP £15. We would make a headband and a tail together. I’d shove him a blue jacket, some grey trousers and he would be away! As it happened though my son wanted to dress up as ‘Horrid Henry’. This made my day. I found a blue jumper with a yellow stripe for £3. With that, some messy hair and jeans my son would have looked fine. The most important thing is he would take part AND have a copy of the book he was relating to.

My one major gripe with this event is some people seem to forget it is World BOOK day and not World FILM / TV day. I appreciate most pieces of popular literature will now be developed into some form for the screen and I am thoroughly supportive of this but if your child insists of dressing up as a character from a film, at least try to find the book they may appear in (if at all), buy a copy and ask them to read it. That is what this day is about.

Being dressed as Batman is fine IF you read the comics.

Being dressed as Elsa from Frozen is fine IF you have read the books that have followed the films.

As I am writing all this though, my excitement to get my son dressed up was pointless. His school decided to do a ‘decorate a potato’ event instead. Suffice to say, it did not have the same enjoyment factor!

A Forgotten Voice No Longer!

A Forgotten Voice No Longer!

I think it is funny how, sometimes, a small gesture can have such an enormous impact. This weekend was the Annual International Conference for a charity called Action Duchenne. It is a charity which, supports those dealing or living with a condition called Duchenne Muscular Dystrophy, as well as helping to fund research to finding a cure. Until a few months ago I had never heard of them but when I came across them I immediately contacted then. You see my brother Darren had Duchenne. It’s a devastating condition that saw his life end at the age of just 22. The average life expectancy of someone with this condition is between 20-25.

I introduced myself to them stating I was a sibling of DMD. I asked if they did anything to support the siblings of those with DMD as, it will have a significant impact on their life. It just so happened that they were looking into this and I was asked if I wanted to write something for their website. So I did. I want to call it something with relevance. I titled it ‘The Forgotten voice’. The reaction to that piece of writing was quite unlike anything I have ever written before. (Below is a link to the piece I wrote)

https://www.actionduchenne.org/Blogs/blogs/the-forgotten-voice-living-with-duchenne-as-a-sibling?platform=hootsuite

After my blog received a reasonable amount of success, I was invited to attend their annual conference as a guest speaker. I was honoured to be asked so of course, accepted the invitation.

This weekend I met, for the first time in my life, other people people living or who have lived either with this condition or alongside it. Almost immediately a series of friendships were formed. Not only that but we would all be giving a talk on our life experiences as a sibling of DMD.

When the actual day came I was very nervous. I wondered around the hotel like a lost puppy. Eventually it was crunch time and the doors to our ‘talk’ were open. We all stood together. Huddled like rounded sheep. The general feeling was a question – “What was the purpose of this talk”. The answer it seemed was quite obvious as, our small room was crammed full of parents. We were genuinely expecting a couple of people, an empty crisp packet and some tumbleweed! They sat there all with desperate looks on their faces. They wanted to hear our stories. They wanted support and advice. It was in that moment I realised I was going to have to give them the hard truths. How the life I shared with my brother moulded me but has also, left be scarred. How my mental health has hit an incredible low some years after my brothers passing and how every sibling will suppress those feelings for fear of them getting in the way of day to day life. Each one of us spoke with a raw honesty and there was an emotion in the room that was felt by everyone.

Once the talk was over, each of us was met continually by parents, thanking us for speaking and that they would be taking what we said on board, as they continue their Duchenne journey as a family. One person even took the time to email us. To be honest the reaction from the talk has been overwhelming. It drained us all emotionally and mentally. It was certainly the most intense experience of my life, to the point where I cannot remember what I actually said.

Now we are all home going back to our day to day lives. I am still processing the events of the weekend. I think its going to take time for the impact our talk has had to actually sink in. That talk has started something. I have no idea what that is and I am too tired at the moment to work it out. But out of an incredibly raw and intense event I have made some very significant new friends.

As siblings we now have a new challenge – to live by our advice. To feel our emotions, not hide or suppress them. This will be a new venture for all of us but the best thing is we can struggle through the mental strife together. No more do we need pointless and unhelpful counselling sessions. No more do we have to try and explain something other people do not understand. We have each other. We are not alone and most importantly, no more are we the forgotten voice!

For the Love of Potter……

For the Love of Potter……

*SPOILERS RE: FANTASTIC BEASTS RECENT TRAILERS AND HARRY POTTER SERIES*

3 days ago the third and final trailer appeared for the upcoming Fantastic Beasts film. I, like many other Potterheads was very excited to see it. And boy, did it deliver……but not necessarily in the way I think Warner Bros and JK Rowling would have liked.

I am talking, of course about NAGINI. That beloved pet of old Voldy is more than we initially anticipated. The excitement from fans has been overshadowed by some serious disappointment and anger from others. Claudia Kim, an actress from South Korea has been cast as the slithery fiend. It has not been a popular decision and here is why:

The first argument is the casting of a South Korean actress when Rowling stipulated the mythology she based the name on comes from Indonesia (which, was wrong anyway. She was later corrected being told it is from India.) Why not cast an actress with the correct ethnicity?

But that is not the only issue. Many argue of it’s inappropriate nature to cast such a role in which, we ultimately see the character become a slave to a power-crazed, middle-aged, white man. Seeing the treatment of certain ethnic groups has not been (and in some cases still is not) great. It feels a little ignorant on Rowling’s part to write such a part. Or so some feel.

The final argument is a character having a condition which, can only affect women has also, been put under scrutiny.

Let’s start by saying the argument regarding the ethnicity issue is a perfectly valid one. For too long now the argument for more diverse characters around ethnicity (and/or sexual orientation) without being a horrendous patronising stereotype, has been all but agreed by most people. But it seems Warner Bros have failed to correctly represent the ethnicity this character should have originally been cast as.

Even if the casting had been done correctly, there is still the problem with the character being a slave and having a genetic condition only affected by women.

My personal view is, we do not know enough about Nagini’s storyline yet to decide whether Nagini’s actions were being done as a willing participant or not. Let’s remember Voldemort’s treatment of everyone was horrendous. It did not matter who or what they were. Every Death Eater was a slave. They may have been willing to support Voldy’s cause but their treatment was not fair or just. I also, think about Bellatrix Le Strange and her serious mental state. I believe this was also taken advantage of by Voldemort. The man cared for no one but himself. Nagini was the only thing he appeared to have any sort of ‘feeling’ for and even then, that is partly down to her being a Horcrux. I hope we learn more about her and maybe, we get some more information that may make some of the fans feel better.

But with all these arguments, debates and anger flying about there is still one person in the middle of it all. Claudia Kim looks thrilled to have been given the part of Nagini. She willingly auditioned for the role, knowing the future origins of this character. If it was that bad, I would like to think she would have had second thoughts about such casting and not taken the role. But she is Nagini so if she is ok with it, I think I can be to.

I want to end by saying to my fellow Potterheads, please do not boycott this film. Put your issues about it all to one side and go see the film with a clear, open mind. This franchise looks amazing. Rowling is a good writer and a phenomenal story-teller. I believe in her and I do not think she will let us down. If it does make mistakes, let’s all learn from them so, we know how ‘not’ to write our stories in the future.

Muchly love, from a happy Hufflepuff

 

 

My Heartache – When the Writing is on Hold

My Heartache – When the Writing is on Hold

The problem with having a creative mind is the need to extract whatever imaginative nonsense you have within your head. Sometimes, this can be easier said then done. Unfortunately, I have not written anything for months. My characters and plots have sat dormant whilst I take a break from it all. I miss writing. But it is hard work. Sometimes it is too hard and I cannot allow myself to get drawn into a stressful situation that ultimately provides nothing in return.

Anyone who follows my blog will know that I have always used fiction as a serious form of escapism. When life would become a little bit too hard or if I felt like I needed a break (as we do from time to time) I would pick up a book. In the last few months though I have struggled to write anything, at all. I wish I was more disciplined. I wish I was one these people who could use her struggles to help strive through the creative writing process but unfortunately, this has not been the case.

The one positive element my writing has experienced involves a short piece I wrote for a charity called Action Duchenne. It is titled ‘The Forgotten Voice’. I wrote it in an attempt to reach out to the siblings of someone living with an awful condition called Duchenne Muscular Dystrophy. The feedback I have received from this written piece has been nothing but positive.

So, if I have finally written something that people have connected with why do I feel so low about my writing journey? I have thought about this quite a lot and I think I know the reason. My charity written piece is incredibly personal. Several people have read it and said ‘I have never thought about it in that perspective, before’. This is both a revelation and also, a little disheartening. It is good because I am aware many people do not think about this particular perspective hence why I called it ‘The Forgotten Voice’. I hope I have opened at least someone’s eyes to the bigger picture when a family is living with a disability but it is also, a little sad. It should not have taken a 30 year old part-time working Mum, with zero letters after her name to bring this subject to light. I do not want to have to write an autobiography for this subject to get spoken about more often and it is an important topic.

Fiction is my first love. It has always helped me even when I have been at my lowest. Throughout my life there has always been a small voice inside my head, criticising and judging everything I do. It constantly belittle’s me, bullies me and has constantly been there in every aspect of my life…..apart from when I write.

That is why my writing is so important to me. That is why I bang on about it all the time. It is the first time in my life, where that horrid voice is no where to be heard. It is silent. Beautiful, sweet, brilliant silence with nothing but my imagination and a keyboard.

I hope I can at least attempt to write mediocre fictional nonsense again soon. I know it is just a hobby, but it really means a lot.

xxx

Books and Wine!

Books and Wine!

On the first Thursday of every month, I get to do one of my favourite things – Visit a friends home, drink copious amounts of wine and (perhaps briefly) discuss a book we have all chosen to read. People all over the country do it but we all call it the same thing – Book Club.

The stereotypical image of half a dozen similarly aged women getting pissed and discussing literature is not 100% far from the truth and nor, do I intend on apologising for it! If anything, I am screaming from the rooftops that everyone should make the effort to join or even create their own club.

For one thing, it is a great way of getting out the house. Yes, it is only once a month but it will always be local (so drink can be consumed) and if you are a full-time mum or someone who lives in their workplace, sometimes that one free evening out is enough to make it worth it. The only you thing have to do is make an effort to read a book.

And reading is life!

Since being part of a book club (and I have been for a number of years now) my reading repertoire as vastly improved. I have read and enjoyed books I would never have even considered reading before. It forces you to expand your thinking which, can only be a good thing!

Also, how many times have you said to yourself “I would love to read a book but I do not have time”? Well, being part of a book group almost forces you to make the effort. You have a deadline in which, to finish to book and there is nothing worse than going to the group when you are part-way and really enjoying. You will find out what happens. That cliff-hanger or twist will be revealed to you.

I love to read but I am very guilty of sticking to the same genre and not allowing myself to breach into other subjects. I have been introduced to some brilliant and also, awful story concepts!

But if I want to improve as a writer, I need to read. And if I do not make time to read, then there is no point trying to write!