"Do not wait for opportunities to present themselves, create them." - Chapter 19 TENACITY - Behind the Smile. I have adopted the habit of flipping to a chapter of my book every few days and reading one of the quotes I had written under my chapter headings. I remember sitting up at 10:55pm at night with my manuscript deadline at midnight, determined to write a few words under each heading that had inspired me to persist through the challenges I had faced. Every so often I need a reminder of the things an enlightened, sleep deprived 19 year old had written so I now, as an occasionally sleep deprived 20 year old, can learn from.
These few words reminded me that I have full power to create and embrace opportunities rather than take a passive approach to my dreams. I wanted to share a few special things that have emerged from this shift (back) in mindset:
WELLNESS
One morning while walking into work, I saw a quote "When 'I' is replaced with 'we' even illness becomes wellness". I have always loved this holistic view however feel self-sufficient and solely responsible for my own health after getting lost in the medical-merry-go-round too many times.
While I have been making the complete decisions surrounding the "how" of becoming healthier, I have had the help of an incredible PT who is holistic and understanding of medical issues. From someone familiar with "exercise anxiety" (worried I will not be able to make it through a gym session because of weakness/illness), I have now become someone who craves and enjoys exercise. In addition to HIIT classes, I also see my PT twice a week where he tailors programs for me and in just 2 weeks I have seen incredible results (reduction in waist/hip/thigh size, increased muscle and overall improvement in strength and health). I have found a noticable difference and constant increase in my strength and could not feel more empowered.
Not wanting to paint an unrealistic picture; I have been on antibiotics and in and out of the doctors over the past 6 weeks for gynaecological issues, however my most recent blood test results and scans are painting an incredibly positive picture and showing vast improvement. I could not be happier.
ADVOCACY
In early March I had the privilege of speaking with the year 12 cohort at Ipswich Girls Grammar School about my story with disability, invisible illnesses, stigma, acceptance and anything else I could cram into our 50 minute session. I was invited by Moira, a young woman in her final year of high school who also has VACTERL. It was beautiful to stand in a room with her, both of us feeling proud of our medical condition that had previously been stigmatised and something that at times we felt we had to keep secret for others to accept us. It was probably the first time two of us, the 1 in 10,000-40,000 were in such close proximity together in a setting that wasn't a hospital or medical conference. It can be daunting at times that you are 'all alone' with a rare medical condition, and it is a huge comfort to know that there is another person out there that you can hug and speak to face to face, who just GETS IT.
The presentation went incredibly well. First the girls were able to help identify who I was, what values I had and provide an idea of what my life was like based on photos of me - showing how little we can really gauge on other people based on their appearance and/or social media presence. I then asked them if they would see me as disabled, to which their response was "no". We were then able to examine public perception of disability as someone who is in a wheelchair or had lost a limb or ability to walk. The girls could then provide ideas on what other disabilities there would be out there - especially as 80% are hidden impairments.
As a group we discussed stigma around certain issues, and their experiences of being stigmatised. We also spoke about times when people had told us that we could not do something - in my situation when I was told I would not be able to model due to scars, or would not be able to live a happy and fulfilled life because of disability. It was my hope to open their eyes to their endless potential, especially at such a crucial time as mid-way through the final year of high school. Words cannot describe the energy and sense of friendship and acceptance in that auditorium that afternoon.
In other news, I was also selected as a Keynote speaker for the H.E.L.P (Health practitioners, Educators, Learners and Parents) Conference in August in Brisbane, as they believed my presentation carries a worthwhile message for all the conference attendees. I am looking forward to sharing my personal experience and proposed adaptions for a school system that can include and educate students who's schooling may be impacted by disability and chronic illness, just like mine was.
I am also incredibly excited for next week; on the 4th of April I am presenting at the QLD Branch of the Continence Foundation of Australia meeting about my disability journey and lifelong incontinence. Only 6 days later, I will be presenting at the Therapy Nursing and Teaching Conference at the Royal International Convention Centre in Brisbane about 'Putting the Ability in Disability' and inclusion of students with disability in schools.
I also had the opportunity to train with Good Talent Media through the Continence Foundation of Australia in preparation for upcoming media surrounding World Continence Week in June. Huge thank you to Jodie Harrison and Tony Nicholls for flying up from Melbourne to lead me through such valuable training.
I also was blessed to have Thomas Exler from Courage to Shine to publish an article about me on their website - see here. Courage to Shine focuses on turning Adversity into Triumph - acknowledge, inspire and motivate those who have had congenital urological malformations (in particular). I was (what mum likes to call) 'love bombed' by many messages and emails from ALL AROUND THE WORLD, including in my own backyard, from people who had read the article and been inspired, and shared their stories. For me one of the major drives for sharing my story is my love for my mother, and how terrified she was when she first found out my diagnosis. She would always tell me that if she could see me now it would have saved her a lot of tears as she would have had hope for her daughter's future. I know not every case will turn out the same as mine, but I believe it is so important to have a positive role model and sense of hope as having a disability doesn't have to LIMIT you.
ANNOUNCEMENT
Glad I got you to read all the way down here to get the news... A few weeks ago I went to the QLD Miss Grand Australia Heats. I have been modelling since 2015 however have never auditioned for a pageant before. I have loved every experience I have had modelling and it has given me the platform to inspire others that I was able to follow my dream and achieve my goals despite my (at times) limiting medical diagnosis AND my scars that cost me previous modelling contracts. As a model, you are more seen and not heard, and I thought rather than working hard to do my modelling and advocacy work separately, Miss Grand Australia would give me the ability to combine my philanthropic drive and efforts, as well as the modelling side that I love.
My choice in Miss Grand Australia was because it focuses on not just exterior beauty, but INNER beauty - EMPOWERING other people; something I have aimed to do through my book, speaking, studies, work and everyday interactions. I could not have found a better fit for me.
After my heats I received a call from the Pageant Director to let me know that I am a NATIONAL FINALIST FOR MISS GRAND AUSTRALIA 2019. Nationals will be held in Sydney on June 8th where myself and 21 other girls will compete for the title of 'Miss Grand Australia 2019'. If successful, I will be going to Venezuela later in the year to compete in the 'Miss Grand International' Pageant and represent Australia. I could not be more overjoyed to have this opportunity to not only represent QLD at nationals, but the 4 million + Australians with disabilities. Disability is not something that is generally associated with 'beauty queen' however I am determined to challenge this perception.
This year MGA will be supporting Destiny Rescue - a charity that is working to end child exploitation and slavery and has rescued over 3,500 children over the past 8 years. I will be doing fundraising for Destiny Rescue so stay tuned for events/initiatives to support this important cause.
I am so happy to be going down to Sydney with Hannah and Jamila, friends and fellow models represented by Mystique.
There are so many incredible things on the horizon that I cannot wait to share with you all.
Love
Anja