Incontinence-It may not apply to who and/or what you think

Incontinence-It may not apply to who and/or what you think

Incontinence: Unable to restrain natural discharges or evacuations of urine and faeces.

Hi Readers,

Please note that I know that the subject of incontinence may not be the most charming topic of conversation for people to talk about, but I’m not writing this article to make readers cringe*, but to simply raise awareness about this issue and some of the stereotypical elements that sometimes surround it.

I’m sure that many people often associate incontinence with pregnancy and/or psychological nervousness (better known as “stress incontinence”), however, what people don’t realise is that it can also happen to people with disabilities too which can provoke shame and embarrassment just as much, particularly if you have Cerebral Palsy (CP) or Spina Bifida. Be assured you’re not alone, this situation can happen to both men and women and you don’t have to suffer in silence as there is help.

For me, I was born with moderate Cerebral Palsy and although I am and was toilet-trained, I still sometimes have accidents if I laugh too much and/or if I hold on for longer than usual.

As I noted previously, incontinence is a condition that happens to both men and women so it’s important for both genders to maintain an equal level of open communication between them in order to help prevent them from suffering in silence. Please note that sometimes men who have had a prostatectomy can also sometimes experience bouts of incontinence which is why it’s helpful for them if they “gradually” pluck up the courage to ask for help and speak up about it if they need to.       

My own experiences with incontinence over the years have sometimes been a bit challenging (especially around boys) and while I now have it under control these days, I did particularly find it hard to deal with, specifically when my male friends are around and they happened to witness me have an accident; which in turn, does sometimes make them feel somewhat uncomfortable and upsets me. In my final years of school in 2006 and 2007, I was thrown into a classroom with boys whose personalities were “emotively immature”* which meant that I had to learn the “boys will be boys” lesson the hard way and I found this extremely difficult to deal with at times because I was the oldest of three girls who had male friends with conservative upbringings, so walking into this unfamiliar territory took me completely outside my comfort zone and on a big learning curve, that at times I found confronting and this did sometimes serve as a hindrance towards my incontinence challenges because I then always felt the need to subconsciously conduct myself in a guarded manner in order to prevent the feelings of shame and embarrassment that it may provoke.

In saying that, what’s mentioned in the paragraph above serves as absolutely no excuse for boys themselves not to be educated on this issue, but it is rather persuasive in raising awareness in getting the stigma that surrounds this condition off once and for all. This can definitely be achievable if the person, with whom the sufferer is communicating this to, conducts themselves with a polite, respectful, sensitive, understanding and considerate attitude.

Here are my tips for incontinence sufferers:

·         Get to know your body physiologically and/or anatomically.

·         Enlist the help of a psychologist or physiotherapist (preferably one that specialises in urinary and bowel incontinence).

·         Train yourself to go to the toilet independently (while this is not often recommended due to the fact that it may disrupt your sleep pattern[s], sometimes when you just need to go then you just need to go. Please note that safety must be paramount when doing this because ideally it’s recommended that you go with light off as the light signals your brain to wake up, despite this fact it may be unsafe to do it that way, so each to their own).

·         Know your laughter “safety cue”. E.g.: If required, feel free to speak up and say “Do not ‘make me laugh’ until…”.

·         Designate a time to stop your liquid intake to avoid being “rudely interrupted” at night.

·         Experiment whether or not incontinence pads work for you.

·         Always go to the toilet before watching a movie and/or seeing family and friends that are funny.

Here’s to a social life full of joy, happiness and lots of laughter!

Cringe: To shrink back, as in fear; cower.

Stereotypical: [Adjective]-1. Beliefs that aren’t necessarily true. 2. Without freshness or appeal because of overuse.

“Emotively immature”: “Emotively immature” is term that I’ve come up with to help me distinguish the difference between boys who wholly “live and embrace” the “boys will be boys” concept and the well-behaved “goody-two-shoes” boys.

Fighting Chance blog 8

Perfection of an unprovoked reality

I’m writing this article in response to a report that I saw on Channel 7’s Sunday Night, a story entitled “A father’s love”.

This report chronicles the story of a boy named Jackson Keleher who was born with Cerebral Palsy as a result of oxygen deprivation. Doctors said, quite adamantly, that Jackson would never ever walk and would be unable to lead a ‘normal’ life. As hard as this is for any first-time parent to hear, little did they know the power of parental love can create wonders and perform miracles.

Jackson’s parents David and Carrie separated not long after his birth and David became Jackson’s sole and primary carer. David was adamant that Jackson would walk and communicate, through means of gruelling physical therapy treatments and constant speech pathology sessions, an emotionally exhausting venture for both David and Jackson. Whilst I admire David’s bravery as well as his fierce fatherly support, the thing that got me talking most was Carrie’s response as to how she felt about Jackson having CP. Carrie is significantly less involved in Jackson’s day to day routine, although she says she loves him and is happy and proud to be his mum she finds the ‘CP part’ particularly hard for her to adjust to and accept, to the point where she referred to it as “repulsive”.

(I welcome you to watch the report and formulate your own opinion on 

https://www.youtube.com/watch?v=WBcKVASGdBs ).

While Carrie’s comments did initially make me cringe, as I was researching this story thoroughly and reflecting on her remarks, I realised that she has valid concerns and such denial and an inability to accept stems from enormous guilt and grief.

For myself I’ll always remain grateful for the life that I have now, if there was a safe cure for CP, would I take it? And my answer to that would be “yes” …….and “no”. “Yes” because I wanted to be a school teacher but I’ve struggled with people’s perception of me. And “no” because I wouldn’t have had the opportunity to meet the amazing people that I have.

Given that, I’d like to pose some questions to you, reflecting on unfortunate circumstances; if you could go back in time and change anything at all in your life, what would it be? And If you had a chance to live your life without unwanted and/or unnecessary challenge(s), would you and why?

Greg Braden once said and I share his sentiments;
“Adversity is an opportunity for us to step into our mastery.”

2012 Pink Ribbon Day

          I dedicate this article in loving memory of Janise Einfield, my aunty Mirna and to all those who have been affected by cancer.

In the USA and Australia, October is breast cancer awareness month and providing that, most Australians have been touched by breast cancer in one way or another. In fact, one in every nine Australian women will be diagnosed with breast cancer by the age of 85. As the number of women affected by this terrible disease grows, so does our need for your help and support.

That’s why the Cancer Council holds the event of “Pink Ribbon Day” which provides the perfect chance for you to do your part in the fight against breast cancer. There is a lot to be done, but we know together we can create a better life for everyone affected by this disease. So please, (heart) [shown below] pink or wear a pink-ribboned shirt brooch (shown below) this October and help us make a difference for all those affected by breast cancer.

It is therefore important that you all know that breast cancer can strike anyone at any age. In rare instances, even males can become breast cancer victims.

Back in 2006 when I was 17, I discovered a lump in my breast and as you can imagine, it scared the garbage out of me but luckily I acted quickly and sought medical attention. It turned out that the lump was benign but nevertheless I had it surgically removed just as a precaution.

I consider myself to have been lucky in that there was lots of media attention on the subject of breast cancer in young people.

Even though most doctors recommend that women undergo regular breast checks between the ages of 40 and 50, the experiences of celebrities like Kylie Minogue, 38, the late Jane McGrath, 42, the late Kerryn McCann (Australian Olympic sprinter), 41 and the late Belinda Emmett, 32 made me realise that it not only people aged 40 and up but young people as well.

The final message of this article is, get to know your bodies both anatomically and physiologically particularly the state of your breast health and if you notice any changes then please seek medical advice immediately. Who knows? It can either change your life and/or save your life.

Fighting Chance blog 6

LifeX

We believe that it is simply unacceptable that a significant portion of our community be excluded from actively participating in society because of their disability. Public isolation, loneliness and a lack of social opportunity is a far too prevalent and unnecessary challenge for Australians with disabilities. So what did we do..? We launched the Life X program in June of 2012, our aim, to make social inclusion a reality!

We run an annual calendar of events, from evenings at the pub and concerts through to weekends away, open to people with disabilities and our able bodied supporters. By doing so, we bring together young people who would otherwise never meet.

Keep an eye out on Facebook and Twitter for upcoming events, and get involved.

Our in-house blog writer Maria Makhoul comments on the Queen of the little monsters Lady Gaga, after attending her concert.

On Sunday June 24, some members of the Fighting Chance team, including myself, were lucky enough to go and see American pop star Lady Gaga at All Phones Arena, in Sydney as part of the Fighting Chance LifeX program.

While many people may classify her controversial stage presence along with her mildly wild personality and eccentric sense of fashion as perhaps not suitable to everyone else’s artistic tastes, on the flipside, her underlying inspirational message overshines that particular fact.

I think that going to this concert help us all connect with our inner wild child and it was a great night overall.

Attendees: Laura O’Reilly (Fighting Chance Australia CEO), Amanda Keegan (volunteer and Kellie Keegan’s sister), Kate Howard-Jones (former carer and HR staff member), Sophie Cooper (Georgia Cooper’s sister and volunteer), Kellie Keegan (current carer and HR staff member), Kylie Daily, Brianna Heaton, Georgia Cooper me, Brianna Azzopardi.

Fighting Chance blog 7

We’re not here for your inspiration . . . I politely disagree

Inspirational: Imparting a divine influence on the mind and soul.

Hi Readers,

I’m writing this article in response to an article by Stella Young that I read on ‘Ramp Up. ‘Ramp Up’ is the ABC website featuring news, discussion, debate and humour for everyone in Australia’s disability communities. Stella Young is a comedian, disability advocate and editor of ‘Ramp Up’. The article “We’re not here for your inspiration” criticises the use of images depicting disabled people doing ‘normal’ things captioned with inspiring quotes intended on encouraging ‘non-disabled’ people to put their worries into perspective, of which Stella disapprovingly labels “inspiration porn”.

In my attempt to respond to her, I’m going to do my very best to advise her to lighten up, encourage her to tone her criticism down and show her that there’s nothing necessarily wrong with being ‘teachably’ inspiring towards others in my similarly entitled blog “We’re not here for your inspiration…I politely disagree”.

I was born with a moderate type of cerebral palsy which means that while I am able to walk using mobility equipment to support me with my physical balance issues, I use a wheelchair for long distances because I get tired. Because my CP is moderate, I sometimes feel reluctantly lucky that I can do the things I can, but despite that, my parents always insisted that I treat myself the same way as everyone else and conduct myself with complete normalcy (whether it’s with your attitude and/or your physical capabilities). So far most of the people that I’ve come across have been encouragingly kind and pleasant towards me.

Although people with a physical disability (like myself) might be doing completely ‘normal’ everyday tasks as Stella so defensively points out. These tasks are in fact challenging for those of us who do not live in a ‘normal’ functioning body. So what then is the dispute over recognising this feat as inspirational? I would argue that to be inspirational one does not need to be extraordinary, rather one can be simply ordinary but in extraordinary circumstances.

As anyone who has a disability will know, growing up can be a real roller-coaster ride. Often you have to search far and wide for inspiration about how you can make your life more meaningful and achieve a sense of purpose and fulfilment. For me, it’s the feat of overcoming obstacles and achieving against the odds that is inspiring, individuals achieving their goals no matter how big or small.

I would argue then, that a photo of a famous athlete with the slogan “you can do it!” “find the power” is no more or less ‘appropriate’ than a picture of an amputee walking on prosthetic legs with the caption “before you give up try”. With the permission of the individual in question how can it be suggested as abusive or disrespectful to advertise ones triumphs in the hope of inspiring others? We all need a little motivational reminder every so often this hardly denotes ‘inspirational porn’.

So, Stella, if you disagree I hereby pose a question: What and/or who would you personally and specifically identify and/or classify as an inspirational person to you?

Maria Makhoul – Fighting Chance in-house blog writer.

My family musician Toni Makhoul

Please note that I do wholeheartedly respect, appreciate and love all types of music (even though as a child, I hated classical music because it made me cry).

Given that, for me, my notion of “music” came in different stages.

Firstly, throughout my childhood, my introduction to it was solely about me liking an artist(s) and/or music band(s), wanting to buy their album and have as many favourite songs of theirs as I wanted. Then, when I moved to Lebanon with my family in December 1997, I got to know the rest of my relatives better and as I got to know my paternal uncle; I soon discovered that he was a musician and a really talented pianist but at the time, it was just a hobby and passion of his that was heard nearby particularly when he played the piano.

Then by my teenagehood, I started discovering different music genres, different musical rhythms, chants, melodies and harmonies and better understanding them in terms of their tune.

I then starting paying more attention to the structure and rhythm of my voice when I sing...and then I discovered that I had a reasonably good singing voice and I could sing, but I unfortunately can’t have singing as my chosen career path because I have a mild speech impairment that sometimes affects my breathing when and/or while I talk, so I just casually sing alone sometimes. I’d like to take singing lessons one day. My personal music motto is: “You’re never too old or too young to go ‘retro’” because I got into the 80s music when I was 16 in 2005.

By my adulthood, I then started paying close attention to the lyrics of my favourite songs or new songs that I hear and I guess the reason for this is because, when I was growing up, I spent most of my childhood reading books, reading dictionaries, playing educational computer games and writing in my diary/journal which now enables me to incorporate music into my writing articles, with one exception though: because I’m not a singer, I’m therefore not able to say to my readers: “This is the perfect song for you to listen to” because it’s unfair for me to do that as everyone has different tastes when it comes to music and singing but what I can say instead is: “I can relate to this song because...(and state my reason for it) or “I really love this song because I can relate to its lyrics” or “The lyrics of this song make me feel...(and put whatever emotion that you may feel about it).”

My paternal uncle Antoine “Toni” Makhoul is a music composer, arranger, and producer. The genre of music that Toni likes to create and play is a light jazz and pop instrumental. He just likes this kind of music and he thinks it is the best way to talk about emotions and love. It’s commonly heard when you are feeling bad and/or when you are feeling happy and when you are in love and/or when you left your lover. He thinks it is the music that has the most common emotional areas and this will make it universal and acceptable worldwide.

You’re welcome to check out his work on his website www.tonimakhoul.com or his Facebook page http://www.facebook.com/ToniMakhoul .

As his niece, never in a million years did I ever think that I’d be living on the other side of the world writing music press releases to promote my paternal uncle’s work which has been a dream come true for me because I’ve always loved music and wanted to somehow explore it further.

I come from an article/story writing career background but I’ve always wondered how people “song-write”. See, for me, as an article/story writer; I sort of see writing as similar to acting, the only difference is that with acting you need costumes, props and to read off a written script to help you get into character whereas with writing you need the research and/or verbal communication between, on and/or about the subject that you write about; to help you get into character in order to be able to write a good article or story. So I was wondering whether or not “songwriters” have to be in a “songwriters’ zone” and get into “character” in the same way that normal and/or other “types” of writers have to in order to write a good song.          

In concluding this article, I’d like to say that writing it has been so much fun for me and I’d like to thank my paternal uncle Antoine “Toni” from the bottom of my heart for trusting me to write this which I’ve thoroughly enjoyed doing. I’m so proud to have both the arts of music and writing running through my paternal family genes because I feel that writing this article has given me the opportunity to combine both my knowledge and love of music and writing into it and I just hope to do and serve my uncle justice with it.

Written by niece Maria Makhoul

We're not here for your inspiration…I politely disagree” (Maria Makhoul's version)

Inspirational: Imparting a divine influence on the mind and soul.

Hi Readers,

I’m writing this article in response to an article that I read on the “Ramp Up”. “Ramp Up” is a disability advocacy blog run by journalist Stella Young.

Stella Young wanted to be a secondary school teacher upon finishing school but had to re-evaluate her options because she discovered that some of the schools in her area were wheelchair inaccessible.

I’m sure that that’s happened to all of us at some point but she’s written this blog entitled “We're not here for your inspiration” and when I read it I thought she was being strictly critical and closed-minded in her viewpoints. You’re welcome to read the actual article and judge for yourself and formulate your own opinion on it on http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm .

In my attempt to respond to her, I’m gonna do my very best to advise her to “lighten up”, encourage her to tone her criticism down and show her that there’s nothing necessarily wrong with being “teachably” inspiring towards others and having that very attribute recognised in return by the person saying it, in my similarly entitled blog “We're not here for your inspiration…I politely disagree”.

My name is Maria Makhoul; I work at Fighting Chance Australia with the O’Reilly family as a "new media and research assistant/in-house blog writer". I was born with the moderate type of cerebral palsy which means that while I am able to walk using mobility equipment to support me with my physical balance issues, I use a wheelchair for long distances because I get tired. Because my CP is moderate, I sometimes feel “reluctantly” lucky that I can do the things I can but despite that, my parents always insisted that I’d treat myself the same way as everyone else and conduct myself with complete normalcy (whether it’s with your attitude and/or your physical capabilities) and so far most of the people that I’ve come across have been encouragingly kind and pleasant towards me.

What is important for us to note is that people with disabilities and/or people who face other life challenges are also human beings who have emotively kind hearts that have the capacity to love, support and encourage others just like able-bodied people can and do which oftentimes is kindly recognised and complimented by strangers. The reason as to why I state this is because, in her article, Stella has bitterly and critically suggested that the “inspirational” attribute that lies in one’s personality be ignored and preferably abolished…which I highly disagree with because it could have many goods to it.

Now I’ll go on to address the subjects of role models and inspirational* people.

As anyone who has a disability will know, growing up can be a real rollercoaster ride. Often you search far and wide for inspiration about how you can make your life more meaningful and achieve a sense of purpose and fulfillment.

I’m sure we all have role models and inspirational people that we admire and look up to and oftentimes we all have that one person that stands out from the pack. Because I’ve faced challenges with this “role model choosing” element when it came to other people’s perception(s) of them, I feel wholeheartedly confident that I have the right ones for me so far which is why I’ve compiled some questions to help guide kids and/or families on how to support themselves in making a suitable decision that best fits them.

Questions:

1.  In your opinion do you think there’s a difference between having the “stranger danger” talk and the “role model(s) choosing” talk with your children? If so, then please explain why and/or how.

2.  How do you explain the difference between “being a follower” and “being a leader” in a grounded way? Example 1: How do you articulate to your child that there are some times in life in which you can’t be “enslaved” into doing what others want from and/or of you and that there are other times in life in which it’s okay to follow someone depending on how valid your reason for doing so is? Example 2: How would you help your child deal with their own self-comparison issues? For instance, if your child said to you: “Mummy, I really want and/or wish that I could be like this person” or “If it’s okay for this person to do this, then how come it’s not okay for me to do it?”

3.  Did you have “role model” guidelines for your kids, growing up? Example: if your child chooses to have someone that they personally know as their role model then you’d have to oversee that there is a level of trust that is and/or gets demonstrated between both your child and their chosen role model and make your final decision on it depending on how you feel about it; whereas if your child chooses to have a celebrity as their role model then you’d have to ensure that they (the celeb) have good and positive attributes that your kids are likely to draw inspiration from and/or be influenced by.

4.  If your child has a celeb role model then in your explanation, how do you separate the “personal humanitarian” part and the “showbiz and fame” part? Example 1: Just because the career industry that we choose to work for requires to do weird, whacky and crazy things, it therefore may not necessarily mean that that’s who we are in real life. Example 2: despite their “celebrity status”, life for them just goes on as it does with everyone else because they are also everyday regular working class people that have their own personal lives to live and lead.

5.  How do you convey the right “role model” message continuously in a grounded way, even if and/or when the conversation gets too obsessive and/or over-obsessive? Example: If you notice that your child is getting too absorbed in the conversation to the point where one feels that they have nothing else to talk about, you might say to them: “While you personally may like this person very much, it doesn’t mean that your life hereby* has to revolve around you talking about them at irrelevant time.

6.  Did you use your own “role model” knowledge and/or your parents’ wisdom around that very subject to help guide your own kids through the “role-model-choosing” journey?

7.  Did you have role model(s)? Who did you look up to? And why?

8.  When you come to a point where you trust your child's "judgement of character" when it comes to their "role model choice", how do you then help them defend themselves against ruthless criticism?

9.  How do you explain the difference between “being a follower” and “being a leader” in a grounded way? Example 1: How do you articulate to your child that there are some times in life in which you can’t be “enslaved” into doing what others want from and/or of you and that there are other times in life in which it’s okay to follow someone depending on how valid your reason for doing so is? Example 2: How would you help your child deal with their own self-comparison issues? For instance, if your child said to you: “Mummy, I really want and/or wish that I could be like this person” or “If it’s okay for this person to do this, then how come it’s not okay for me to do it?”

10.                    Did you have “role model” guidelines for your kids, growing up? Example: if your child chooses to have someone that they personally know as their role model then you’d have to oversee that there is a level of trust that is and/or gets demonstrated between both your child and their chosen role model and make your final decision on it depending on how you feel about it; whereas if your child chooses to have a celebrity as their role model then you’d have to ensure that they (the celeb) have good and positive attributes that your kids are likely to draw inspiration from and/or be influenced by.

11.                    If your child has a celeb role model then in your explanation, how do you separate the “personal humanitarian” part and the “showbiz and fame” part? Example 1: Just because the career industry that we choose to work for requires to do weird, whacky and crazy things, it therefore may not necessarily mean that that’s who we are in real life. Example 2: despite their “celebrity status”, life for them just goes on as it does with everyone else because they are also everyday regular working class people that have their own personal lives to live and lead.
12. How do you convey* the right “role model” message continuously in a grounded way, even if and/or when the conversation gets too obsessive and/or over-obsessive? Example: If you notice that your child is getting too absorbed in the conversation to the point where one feels that they have nothing else to talk about, you might say to them: “While you personally may like this person very much, it doesn’t mean that your life hereby has to revolve around you talking about them at an irrelevant time.

13. Growing up, did you use your own “role model” knowledge and/or your parents’ wisdom around that very subject to help guide your kids through the “role-model-choosing” journey?

I have a few role models: Fran Drescher, Kris Jenner (Kardashian family mum - please note that I understand that everyone has their own opinion about them and that’s ok but even though I read her book “Kris Jenner and all things Kardashian” as an adult, in hindsight I sort of wish that it was around when I was growing up because you could learn lots of valuable lessons from it so you can read it if you wish) and Sharon Osbourne but there’s one person that stands out from the pack for me…that is 2005 Australian Idol contestant, turned singer/songwriter and youth and crisis worker James Kannis because he’s a positivist* who inspires me and helps me a great deal to always stay positive. Even though I have been lucky enough to have met him and his family and am now friends with him, I’ve sometimes had to “politely disagree” with him as to why he finds me an inspiration, the realisation of that came to me when he said to me: “Maria, there are people out there who take things for granted, and to see people like you that are so alive and motivated despite the daily challenges that you have to go through, is an inspiration to me", which completely resonates with me.

So, here’s my advice on what to look for in role models and inspirational people:

·        Follow your heart and take your brain with you.

·        Look for someone you can relate to and who you feel reflects your personality best.

·        Depending on if you feel comfortable and confident about them being your role model and/or inspirational people then sometimes you may feel the need to treat the experience and/or the person like a counsellor.

·        Look for someone who’s “critiquingly nurturing”* towards you.

·        Look for someone who embodies these attributes: respect, realism, humbleness, honesty, truthfulness and openness.

·        If you need a different perspective on things then don’t be afraid to enlist the help of the opposite gender for help.  Who knows? You might be surprised.

The bottom line is that you can have as many role models and/or inspirational people as you wish for they can absolutely change your view on things and even your life.

So, Stella, I hereby pose a question: What and/or who would you personally and specifically identify and/or classify as a role model/inspirational person to you?

Positivist: [Adjective] - 1.The state or quality of being positive. 2. Of or relating to positivism; "positivist thinkers"; "positivist doctrine"; "positive philosophy".

“Critiquing nurturing”: A term that I came up with to describe someone with a kind and loving heart and/or personality who’s also able to give and/or convey “tough love” when required.