The 21 year-old who has Spinal Muscular Atrophy Type 2, moved from the Ukraine to England at the age of 6. She currently lives in Bradford, Yorkshire with her Mum and younger sister.
Kat was good enough to talk with me about life with a disability, her experience as a physically disabled model, her growing YouTube channel and the issues she campaigns for.
Spinal Muscular Atrophy
1. Kat, please tell us about your disability and how it affects you.
I was diagnosed with Spinal Muscular Atrophy type 2 when I was only a year old. This is a genetically inherited, progressive muscle-wasting condition.
I was told that essentially my spinal cord doesn’t communicate with my muscles properly. This means that over time my muscles slowly lose any strength they once had.
SMA2 affects all my muscles. This limits my mobility and my breathing. I’ve never had the ability to walk but I used to be able to crawl until around the age of 10. I’m now non-ambulant and a full-time wheelchair user.
When I was younger, I was often in and out of hospital because I struggled to fight off infections. A common cold would often develop into something much more serious. As a result, I was unable to attend school and was home-tutored instead.
I guess I’ve had quite an unconventional, drama-filled life, but I don’t know any different. This is my normal.
Life as a disabled Model
2. How did you become a model and what does this mean to you, as a young disabled woman?
I’ve always enjoyed being creative and experimental with my style. Not only did Instagram provide a platform for that creative outlet, it also encouraged me to express my style and share my life and experiences with people who are leading similar lives.
When I was younger, I had never seen anyone with a disability in the fashion world, and so I never imagined that someone like myself, with a physical disability, could be a model.
One day, Instagram suggested that I follow Zebedee Management. After scrolling through to find out more about them, I quickly fell in love with what they’re all about and instantly knew I wanted to be a part of their family.
I applied after attending a fashion show hosted by Zebedee Management, and was then invited to attend a shoot. I never imagined myself as a model but being accepted by Zebedee has given me a massive confident boost!
Joining Zebedee as a disabled model has made me proud to be able to represent young disabled women, like myself, in the media. This opportunity has enabled me to empower and act as a role model for the younger generation.
I feel privileged to have worked on three wonderful campaigns, all of which are very special to me.
I’ve made it my mission to embrace and love my body after years of self-loathing. It was therefore a really special experience for me, especially to have found the confidence to bare all on camera and share my scoliosis story.
I was fortunate to be chosen as one of their ambassadors, and to work alongside seven very talented people. The four LGBTQ+ campaigners, including myself, were partnered with four incredible artists who painted our portraits. The portraits were then displayed throughout the UK during the Birmingham, London and Brighton Pride weekends.
Our portraits went on to be sold at auction and all proceeds went to LGBTQ+ charities.
Visibility, diversity and inclusion is so important, and I’m so proud to be able to share my perspective and represent those with disabilities in the LGBTQ+ community. Unfortunately I do believe that we are underrepresented and I’d love to improve this by talking about my sexuality more.
It is only two years since I came out, so I’m still learning about myself and the community. I’m very fortunate that my Mum accepts me and my sexuality, although my family back home in the Ukraine are not yet aware.
3. Kat, could you please tell us about your Youtube channel?
I started vlogging because I wanted to share the highs and lows of my life, as a young disabled woman living with SMA2. Not only that; I also wanted to raise awareness of the fact that my life is actually pretty ordinary for a 21 year-old woman, despite being a full-time wheelchair user. I live at home with my Mum, younger sister and our dog named Khloe Kardashian. I love to go out shopping, clubbing, meeting friends and traveling.
I was inspired to start my own Youtube channel after I became obsessed with other vloggers whilst in hospital. Back in 2012, I was subscribed to many of the famous ‘Brit crew’ content creators, such as Zoe Sugg and Louise Pentland. I found myself watching their YouTube channels for hours and I always knew it was something I wanted to pursue.
I’m proud to be a disabled creator and put the platform to good use by sharing my experiences. I hope my contribution offers a realisitic and informative insight into what life is like with a disability, and that society learns to understand us (disabled people) better.
I love the YouTube community and feel like it’s a second family. I can definitely see myself working in the media in the future.
I also love that YouTube allows viewer anonymity. Anyone can observe my vidoes without needing to engage with me directly, thereby eliminating any potential awkwardness.
Some people are curious to ask disability-related questions but are often too shy or afraid to do so. They might be scared of saying something that may come across as inappropriate, or they may not know how to address topics appropriately.
I’m open to discussing most topics, however taboo they might seem. For me, it’s about trying to encourage people to interact and engage with me and my videos, as I love to educate, inform, raise awareness and simply chat with curious folk!
4. You describe yourself as a disability activist. What are the issues that are most important to you?
I grew up feeling super self-conscious about my disability, to the extent I would actually try to ignore it in the hope that one day everything would be ‘normal’. But when you think about it, what is ‘normal’, anyway?
I believe that we should embrace our differences, encourage acceptance and celebrate diversity in all its forms!
I think that society in general still interacts with us (disabled people) in a very condescending and neglectful manner. People are either sweeping us under the rug, or using us as tokens of diversity and not really accepting or understanding our lifestyles. It’s 2018 and frankly, it’s tiring!
I’ve been involved with a number of opportunities, such as speaking on ITV national News about my short film, which I released last year with the help of Fixers UK. I also attended an event in London with FixersUK, where I spoke to sponsors about my film and promoting disability awareness.
I have also presented talks, and held workshops with students and tutors in schools and colleges. As well as participating in panels at the WoW festival, I recently took part in a discussion for BBC 5 Live about how disability can be better represented in the fashion and beauty industry.
I’d like to thank Kat Pemberton for taking the time to answer my questions.
Today’s post is a guest feature from Michael Leavy, Managing Director of Home Healthcare Adaptations, a family-run company that specialises in adapting homes for the elderly and less abled.
How Seniors Can Feel More Secure At Home
It is frightening just how many older people’s homes are subjected to burglaries and break-ins. Worse still, seniors themselves are targeted by malicious criminals with no respect for human life.
Thankfully, there are measures such as alarm systems, CCTV and doorbell cameras which can improve the security of a person’s home. These could be well worth investigating for elderly relatives.
All too often, we hear about elderly citizens having their houses burgled or, even worse, being attacked in their own homes. It takes an especially cowardly individual to deliberately intrude upon an elderly person’s homestead and threaten to inflict violence on them, but sadly these types of incidents occur with regularity.
Therefore, we should advise elderly relatives living in their own houses to take no chances when it comes to home security. No matter how much a security system or other measures might cost to install, the value to be derived from the peace of mind that it’s there is 100% worthwhile.
If an elderly parent living by themselves knows that their home is as secure as it can be, they will feel far more comfortable and we will be at ease knowing that they feel safe.
Home security has been made easier with the advent of automated systems which enable homeowners to set alarms remotely, switch on lights at timed intervals and monitor the house while away.
A burglar will usually be able to tell when a house is unoccupied, so even if they feel that the opportunity is right to strike, home automation can catch them in the act and allow for corrective action to be taken straight away.
We should also check in on elderly parents or neighbours regularly and advise them on small things that they can do to improve the security of their home. Simple measures like giving a house key to a trusted friend or family member instead of leaving it under a welcome mat, or keeping any valuable items obscured from the viewpoint of anyone looking into the home, will help to make them feel more secure.
The infographic below from Home Healthcare Adaptations offers some sensible pointers on how you can make elderly parents feel more comfortable and secure in their homes.
For over a decade, I have been hiring assistants (via Direct Payments) to help me with an array of tasks, including personal care.
I prefer to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.
I’m in the fortunate position of having a hugely supportive family who provide much of my everyday care. Since I live with my parents, I am unable to officially employ them as my carers, and so they carry out this role unpaid!
I do appreciate that not everyone has relatives to rely on. For these individuals, the only option is to pay others, often strangers, to assist with their care needs.
Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.
For others though, in times of desperation, there’s no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally, I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.
Over the years, I’ve employed around 10 carers/personal assistants, and interviewed many, many more! The most successful sources of recruitment for me are friends, neighbours, word of mouth and Facebook, though I also advertise locally (newsagents, post office, school newsletters, newspapers, etc).
If you are a full-time carer (at least 35 hours per week) you may be entitled to Carer’s Allowance.
You don’t need to be related to, or live with, the person you care for.
My Mum is in receipt of Carer’s Allowance (currently £64.60 per week) as she is my primary carer.
This may seem like a decent sum of money, but consider ~
£64.60 = 35+ hours care work. That equates to £1.80 per hour
This doesn’t include expenses, e.g. fuel/travel costs, parking fees (hospital appointments), etc.
My Open Letter to Carers/PAs
On behalf of all who require personal/social care, I invite anyone considering taking on the role of carer/personal assistant to think carefully about what it really means before you do apply.
Firstly, this is not a choice for us – it is a necessity! We’re not too busy or too lazy to do things for ourselves. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.
As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are, in effect, placing our lives in your hands when you take on the vital role of personal carer.
Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.
We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification.
Please do bear in mind that disabled peoplehave busy, purposeful lives too, sodon’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance.
As you would with any potential employer, be professional and courteous.
If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this occurs, but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.
Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.
Are you dedicated, trustworthy, reliable, able and willing to learn? Ask yourself: are you considering care work for the right reasons? (it is not an easy option!)
Your role as PA may be demanding and will involve a variety of tasks. You will be responsible for the safety and wellbeing of your potentially vulnerable client/employer.
So, if your attitude to care work is casual and indifferent, this is most definitely not a job for you!
Following on from Paralympian Jonnie Peacock’s influential appearance on last year’s Strictly Come Dancing, the latest line-up includes Para-triathlete Lauren Steadman and acid attack victim Katie Piper. The former has no lower right arm, and the latter suffered significant facial disfigurement following a violent attack when she was only 24 years of age.
The inclusion of these two young women on such a high-profile BBC One talent show, with viewing figures in excess of 11 million, will no doubt play a big part in the promotion of positive views on disability and diversity, as well as encouraging body confidence.
Katie Piper – Acid attack victim and charity founder
35 year-old TV presenter, author, philanthropist and charity campaigner Katie Piper was left permanently scarred after a vicious acid attack in 2008. The former aspiring model has subsequently undergone over 60 necessary surgical procedures.
The industrial strength sulphuric acid that was thrown in Katie’s face has caused extreme damage and left her with sight, swallowing and breathing issues, requiring ongoing, invasive treatment.
The perpetrator was instructed to carry out the callous attack by an abusive former boyfriend whom Katie had met online.
Over the past decade, Katie has found admirable strength and persevered through the most trying of times. She bravely shared her story in two autobiographies and the 2010 BAFTA winning documentary, ‘Katie: My Beautiful Face’.
Katie has written four more self-help books, fronted several televised shows relating to body disfigurement, and most notably established The Katie Piper Foundation, to support fellow victims of acid attacks. She is also now happily married and has two young daughters.
Katie & Strictly Come Dancing
Prior to being paired with professional Strictly dance partner Gorka Marquez, Katie said, “there was a time not long ago that I wondered if I’d ever be glamorous again and now I know that is going to happen!”.
Katie Piper is all about embracing body confidence and celebrating diversity, whilst raising awareness of the consequences of acid attacks, which is a crime that is sadly on the increase. Her appearance on this hugely popular primetime BBC show will enable her to reach a wider audience and spread that message.
Piper is acknowledged to be the most anxious of this year’s celebrity contestants. Having really struggled to overcome the nerves during her first performance of a Waltz to Adele’s ‘when we were young’, Katie scored 17/40. Her confidence was knocked by negative feedback from the judges, particularly Craig Revel-Horwood who did not hold back.
Katie has since revealed, “it’s funny because like in the first week it did really affect me and it was silly because whenever I would wake up on Sunday at home it was like your 35-years-old and it’s an entertainment show, calm down.”
Katie and Gorka received their lowest score when they returned the following week with a Paso Doble. The choreography was intended to reflect the motto of the song to which they danced; ‘confident’ by Demi Lovato. However, Katie was visibly close to tears upon hearing the judges comments. While Darcy attempted to focus on the positive attitude with which Katie possessed, the others described her as “Stompy”, “plank-ish” and in need of improvement.
Nevertheless, the couple were supported by the viewing public and voted through to week three, and thankfully so, since their Foxtrot earned them 22 points – their highest score.
Katie says, “by week four I was in the groove, laughing and enjoying it and it was okay. You go in the green room afterwards and the [judges] are just normal, nice people.”
Sadly a Jive was to be Katie’s last dance on Strictly. Though disappointed to leave the competition relatively early, Piper admits though she overcame her nerves, insecurities and improved whilst on the show, she is not a natural dancer, and wouldn’t have wanted to be patronised or pitied.
Lauren Steadman – Paralympian
26 year-old Paralympian Lauren Steadman, originally from Peterborough, was born without a lower right arm. However, this has never prevented the determined sporting star from pursuing her dreams.
This Elite Para-triathlete is already a Double World Champion, Paralympic silver medallist (Rio 2016 – Women’s PT4) and six times European Champion.
Encouraged by her uncle who was himself a triathlete, she began competing in her local swimming team from age 11, representing Team GB. Two years later, Steadman took part in her first international competition in Denmark, as well as the 2008 Beijing Paralympic Games. Intent on pushing the boundaries of possibility even further, she switched sports, from swimming to the triathlon, after the London Paralympic Games in 2012.
Alongside her demanding athletics career, Lauren has pursued academics and achieved a first-class Psychology degree in 2014, followed by a Master’s in Business and Management.
Lauren recalls, “In one year I had taken all three titles – British, European and World Champion – for the first time, and graduated from university with first class honours. It really couldn’t get much better than that!”.
Lauren & Strictly Come Dancing
Lauren signed up to appear on the latest series of Strictly Come Dancing as she wanted to set herself a new challenge, learn another skill and test her “own levels of uncomfortableness”. When asked what she was most excited about she replied, “pushing myself and any boundaries I may encounter with having one arm. I like to succeed even if the odds are against me”.
With no experience whatsoever, Steadman claims her friends and family would describe her amateur dancing style as that of a baby elephant!
The glitz and glamour of Strictly is indeed a stark contrast to her sporting life. Not only that, dance itself is a very different discipline to what she is used to as an athlete. Dancing requires fluidity, expression, emotion and creativity, rather than the rigidity and stern focus necessary for triathlon events.
Despite all the odds, Lauren and partner AJ Pritchard stepped out with an impressive Waltz in the opening week of the show, scoring 25/40 from the four judges. The couple dropped 3 points with their second dance; a Charleston, and were awarded 20/40 for their slightly awkward Cha Cha Cha in week three. However, they returned on top form the following Saturday with an elegant Quickstep, earning them 25 points.
Their latest performance marks a first in Strictly history – a Contemporary dance, newly categorized as the ‘couple’s choice’. It was a highly personal interpretation with choreography designed to represent Lauren’s personal journey, her defiance and disability. The emotional dance was awarded with a standing ovation from the studio audience and 24 points from the judges.
Lauren has chosen not to wear a prosthesis during her time on Strictly. Preferring that her disability remain visible, she is keen to break down barriers, challenge convention and encourage other disabled people by demonstrating how dance can be adapted to suit different bodies and abilities.
For Lauren, the rollercoaster Strictly journey continues…
I am 30 years old, and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.
Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold in the urge all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.
This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course, I didn’t want an operation, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.
So, I resigned myself to the only option available to me at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.
Often, there is not enough room to fit a wheelchair in a disabled toilet, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists…what hoists?!
The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!
I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.
The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.
The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.
Each registered Changes Places toilet includes:
1. – a height adjustable adult-sized changing bench
2. – a tracking hoist system, or mobile hoist where not possible
3. – adequate space for the disabled person and up to two carers
4. – a centrally placed toilet with room either side
Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.
Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.
Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.
1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?
I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.
2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?
My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!
It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.
3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?
Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.
4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?
5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?
Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”
I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!
6. Has your attitude to disability, your own in particular, changed over time?
Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.
7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.
Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.
I would like to thank Shane for taking the time answer my questions.
While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.
I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.
I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.
For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?
My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.
Here are a few of my coping mechanisms:
1. Music therapy ~
Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).
(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)
There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!
Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.
He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…
3. Alone time ~
Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.
4. Get out the house ~
Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.
5. Avoid social media ~
It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.
This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.
Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.
Though I’d rather not admit it, I have a pretty big birthday coming up. In just over a week, I turn 30! It might not seem like much of a milestone to most people. But for those of us with muscular dystrophy, 30 is a big deal.
I’ve never really considered or cared much about age. Getting older has never bothered me, and I didn’t think I’d be fazed by reaching the big 3-0. But I’ll be honest, it is getting to me…just a little.
For various reasons, I’m not a fan of my own birthday at all. I’d rather it went unacknowledged and unnoticed. I hate any form of attention and am much happier when the focus is on other people. I’m definitely more of a hide in the corner type!
Back in October, I went on a five-day cruise to Amsterdam and Bruges, to celebrate my birthday. There are no other upcoming plans (at least, none that I’m aware of).
Those closest to me know I don’t like surprises (perhaps I am a bit of a control freak). So, if anything, all that’s left to come is a small family gathering – basically Sunday roast with the folks, the brothers, my sister-in-law and baby nephew. And that suits me just fine!
Muscular Dystrophy ~ A Life-limiting Condition
Accept it or not, the sad fact is, muscular dystrophy is a life-limiting condition. I’m aware of others who were told by medical professionals that they shouldn’t expect to live beyond the age of 20 (if that). In contrast, my parents and I were never given any indication whatsoever of my life expectancy. At no point were we told, ‘Carrie won’t reach adulthood’. Perhaps my consultants were being overly cautious. Perhaps they were just clueless! (I suspect the latter).
In a way, this allowed me to grow up in a state of blissful ignorance. For a long time, I believed I had just as much chance of growing old and wrinkly as the next person. It wasn’t until my late teens that I realised this wasn’t the case.
Now, I don’t want to get all deep and downbeat – just trying to keep it real (on the advice of certain people. You know who you are!).
Essentially, for better or worse, life has taught me to expect nothing. Expectation often leads to disappointment. These days, I try to go with the flow, I don’t make long-term plans or look too far into the future. I prefer to focus on the here and now.
Right now, I’m going to hold on to my youth for as long as possible by continuing to laugh at silly, childish things. I’m all about laughing, playing and having fun – believe me, I’ve had more than my fair share of serious!
And to anyone who doesn’t know otherwise, I’ll soon be 25, not 30 ~ thank’ya muchly!
Today is Remembrance Sunday. A century has now passed since the signing of the armistice, marking the end of the First World War.
11/11/1918 ~ the day the guns fell silent along the Western Front, and four long years of fighting came to cease.
‘The war that will end war’ ~ H. G. Wells
On the eleventh hour, of the eleventh day, of the eleventh month, a two-minute silence is held every year to observe and remember all who have fought and lost their lives in war, both past and present.
Above:‘Poppies: Weeping Window‘, Installation. Here at Hereford Cathedral in April 2018. Part of the 1914-18 NOW, WWI centenary commemoration #poppiestour.
Explaining Remembrance Day to children
Recently, a friend told me that her seven year-old daughter had asked why we wear poppies and what Remembrance Sunday means.
She didn’t really know what to say or how to explain it. So she asked if I knew of any age-appropriate books or films to give her an overview.
I’ll be honest, I was fairly stumped! She’s a mature kid, but still, she’s only seven.
How do you explain, to a young child, the concept of ‘poppy day’, and the importance of remembering those who fought in a World War that took place 100 years ago?
(If you’ve any ideas or suggestions, please leave a comment and let me know. Thanks!)
Last weekend, I watched the film War Horse (2011), based on the novel by Michael Morpurgo. I’ll admit, I cried.
It’s an incredibly well told story depicting the perpective of the English, French and Germans during WWI, via war horse Joey who travels throughout Europe, encountering numerous owners.
I had previously read War Horse the novel as well as Private Peaceful, also authored by Morpurgo. Though I wouldn’t recommend these titles for a seven year-old, they are, I feel, brilliant for anyone wanting to know about the effects of the Great War on individuals, families, relationships and communities.
(What books or films would you recommend for primary school children who want to learn about WWI and Remembrance Day?)
~ Please do let me know how you are spending this Remembrance Sunday ~
~ Are you attending a service?
~ Will you be thinking of relatives who served in war?
~ Do you have children with questions of their own?
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