SBS-Life: The bald and the beautiful

SBS-Life: The bald and the beautiful

Bald from age seven, Oscar is a poster-boy for cool acceptance in a world in pursuit of luscious locks. Hair is big business, worth around $4.5 billion to Australia’s economy. Supermarkets and pharmacies devote complete aisles to the pursuit of luscious locks, tremendous tresses and magnificent manes. Late-night advertising bombards men with miraculous hair-growth products, procedures and potions preying on the hyped-up morbid fear of going bald. Perhaps it’s time to take a tip from someone who has mastered a crisis that went way beyond the average bad hair day. In May 2014, seven year old Oscar was at school, busy completing his daily maths sheet when a few hairs dropped onto his work. Two days later, his parents Charmaine and Nick, noticed two small bald patches on his scalp. Seven days later all of Oscar’s thick chestnut curls were gone. His parents frantically searched online for answers, fearing that his hair loss was a sign of a dreaded disorder. Oscar embarked on a seemingly never-ending round of doctor’s visits, blood tests, specialists and treatments. A month later, Oscar lost his eyebrows and eyelashes and a diagnosis was confirmed: Oscar had Alopecia Areata Universalis, the rarest type of alopecia, involving the complete loss of body hair. “From my research, I also knew this was the hardest type of alopecia to treat with current therapies,” Charmaine said, adding that current steroid-based treatments are unreliable and plagued by side effects. Alopecia Areata Universalis (AU) is thought to be an auto-immune disorder, where the immune system mistakenly attacks hair follicles and fingernails. Approximately 1 in 125,000 people will get AU and it can occur at any age, with males twice as likely to get the condition. Roughly 20% of people with the condition have a family member with alopecia and its onset in those pre-disposed is probably triggered by an environmental factor.
Oscar with family
Family time with parents, Charmaine and Nick, and siblings, Archie and Erin.
Charmaine and Nick admit that, in hindsight, the speed at which Oscar lost his hair was a blessing. “We didn’t really have time to dwell on things because it all happened so fast. When we found out it wasn’t cancer it was such a relief,” Charmaine said. Nick added, “You get your own ability to cope when you see your own kid shows such maturity dealing with his condition.” Charmaine said that the best advice she received was from paediatric dermatologist Dr Linda Martin when it became evident that it was unlikely that Oscar’s hair would grow back. “Take care of his soul,” Martin said, and with the aid of some sessions with a child psychologist, Oscar and family are moving on together. “It’s become our new normal and we’ve all adjusted,” Charmaine said. On first meeting, many people assume that Oscar’s hairlessness is from cancer treatment which in itself has its own challenges. “You get pretty tired of always telling people,” Oscar rolls his eyes and parrots: ‘No, I don’t have cancer, No, you can’t catch it. No, I don’t know if it’ll grow back.” Another challenge for Charmaine and Nick will be familiar to any family with a ‘different’ kid: with so much focus on Oscar, younger siblings, Archie and Erin have naturally been prone to the occasional attention-seeking behaviours. “That’s pretty normal I think,” said Nick. “When all this happened we may have gone a bit over the top with attention to Oscar but it’s all settling back down a bit now.”
Crazy hair day
Oscar organised a ‘Crazy Hair Day’ at school to raise awareness and funds for Alopecia Areata.
Oscar organised a ‘Crazy Hair Day’ at his school in November last year to raise awareness and funds for Alopecia Areata, and his school friends helped promote the cause with posters and advertising. The whole school – teachers included – turned up sporting hairspray, wigs and crazy hair styles. School Principal Clint White said, “Not only did the event raise over $400, it more importantly built self-esteem and awareness of the adversity that one of our students face each day. The support of the students and parents was amazing.” Eighteen months after losing his hair Oscar is determined to not let his lack of hair define him. Apart from the usual stares from strangers and the constant application and re-application of sunscreen, Oscar says Alopecia comes with its own benefits. “It gets a bit boring explaining my condition but the lady at the shop always gives me a free chocolate and when I play soccer the guys on the other team don’t try to tackle me as hard.” Oscar loves drumming and plays in the school band as well as a small rock combo that has played at a few parties and at a local club. “I think I’d like to be a musician when I get older,” Oscar reflected. “People kind of expect you to look a bit different if you play in a band.” The Australian Alopecia Areata Foundation offers information and resources for people with dramatic hair loss and their carers. Visit www.aaaf.org.au for more info. Words and photography by Brendan Fitzpatrick Published 8 January 2016 at: http://www.sbs.com.au/topics/life/health/article/2016/01/08/bald-and-beautiful

Positive Influence – Supporting survivors of domestic violence

New South Wales 2016 Woman of the Year, Jen Armstrong is founder of the Beauty Bank, and a woman always on the go and on a mission.

As a domestic violence survivor, Armstrong now looks at ways to support others transition out of abusive relationships and into situations of support and safety.

Jen says that the recent launch of ANZ’s Money Minded report addresses an important issue in the area of family violence.

“Getting out of an abusive situation is really difficult, and it’s made harder if you don’t have the financial resources and you don’t understand your rights or even have a handle on how to manage your money,” she says.

“Anything that can help women rebuild is great, and education is something that no-one can take away from you.”

Even a small gesture of support after leaving a violent situation can help rebuild self-esteem and confidence, she says: so in 2012, she started The Beauty Bank to donate care packages to domestic violence survivors.

“I was in an abusive marriage with a violent man. I had a ten-month old daughter and was six months pregnant with my son. After being put in hospital for the third time after being kicked in the stomach, I knew I had to get out.”

With the help of a Police Officer and a Social Worker, Jen escaped to a safe house with her daughter. “They told me if I didn’t leave immediately, they’d take my kid away from me. That was the moment that ultimately forced me to leave.” Jen admits her mental health had become so poor that she found it difficult to pluck up the courage to go.

Jen took few personal possessions when she left and struggled to make ends meet. “Everything I had went to looking after my daughter and getting ready for the birth of my baby.”

Managing the limited funds she had in the early days stretched her to the limit.

But when Jen received a donation of some baby goods from charity organisation Dandelion Support Network, with a care package including a bottle of luxury body wash – it was the catalyst that prompted her to devise The Beauty Bank.

“It seemed insignificant at the time but it was a little treat – an indulgence that I would never have purchased.”

On putting her daughter to bed at night, Jen would shower and use the body wash. “It was a tiny life luxury – a little indulgence that made me feel special. It made me feel like I wasn’t worthless and it helped restore my self-confidence,“ she remembers.

“It was then I thought: if this simple thing could do this for me, then it could do it for other survivors too.”

Growing the Beauty Bank

The Beauty Bank has since gone from a simple concept to a service that offers care packages to women and men coping with the transition away from abusive relationships. Each care package contains cosmetics, toiletries and other ‘life’s little luxuries,’ distributed via social workers to people forced to leave domestic violence situations.

The demand for the service has grown hugely and it currently distributes 250 care packages each month worth an average of $235 each, with all items donated by the community and sorted and packaged by volunteers.

The Beauty Bank has been such a success that it has outgrown its original scope and there are now plans to expand into other states.

“Our current challenge is to keep up with demand as the success of the project has grown. We need to find more suitable premises and get some corporate sponsorship on board too,” Jen says.

Survivor story

Jen and her former husband had not been married long before occasional abuse escalated, with the situation worsening when they moved from two incomes to a single income family.

“That’s when the financial abuse, control and manipulation got out of hand – I had to explain where I spent every cent. If I had a coffee, I’d have to explain where I went and with who I went with,” Jen says.

“Domestic violence is about control and domination. Whether it be physical, psychological, emotional or financial, it’s about breaking someone down to make them feel worthless.”

Even now, that period of Jen’s life affects her. “I still see a domestic violence counsellor now and she is helping me deal with a lot of the issues that continue even today. The physical scars may heal quickly but the psychological and emotional damage that we keep inside takes a lot longer to heal.”

With The Beauty Bank now largely being run by Operations Manager Denise Dolan, Jen’s current focuses is on public speaking, particularly talking to young people in schools.

“It’s vital to get across the importance of respect and support and being a decent person,” she explains. “So much acceptance of a culture of abuse and violence comes from what young people see and how they act. Girls and boys need to build each other up, not tear each other apart.”

Education and Financial Literacy is key

To Jen, education and empowerment of women is crucial to safeguard against calamity.

She says women need to be actively involved in financial decisions and management and to have financial literacy.

“Don’t rely on your partner to manage everything – know where the money is, how it is being spent. A person shouldn’t be in a situation that they have to stay in an abusive or violent relationship because of financial necessity.”

Jen knows this first-hand. Though she’d left the relationship, she couldn’t leave the $15,000 credit card debt her husband had accumulated in her name.

Pregnant and unemployed, she had no means of repaying the debt. She was living in temporary accommodation and had no assets – and was very close to being declared bankrupt. If it wasn’t for the help of an astute financial counsellor, she would be in a very different circumstance today.

“I had all this money that I owed and I knew that if I was declared bankrupt I would have absolutely no chance of recovering from that.”

Armstrong wants to see financial counselling made available to all domestic violence survivors.

“When you’re in the middle of the crisis, the bills and expenses still keep rolling in and often there is no way to pay back your debts. That adds hugely to the stress you’re going through and really impacts negatively on your mental health. Survivors need help getting themselves financially back on their feet.”

Learning to achieve her dreams

Since 2012, as well as creating The Beauty Bank, Jen has completed two diplomas and is close to completing her degree. She’s studying a Bachelor of Business (Advanced Business Leadership) at Western Sydney University, majoring in Sports Management.

“WSU has been really supportive of my particular situation, and the flexibility they offer lets me structure my learning around work and family – and that’s allowed me to get really great marks.”

Jen also works four days a week as the Stadium Operations Coordinator for the Cronulla Sharks Rugby League Football Club – and her employer has come on board, making The Beauty Bank the Signature Charity for the Club.

“The Sharks have been fantastic in helping me get public exposure for what we are trying to do at The Beauty Bank and getting the message out to the broader community,” she says.

Jen’s job has also been hugely rewarding, with 2016 a stand-out year for the NRL club. Membership and game-day crowds were on the rise, and success on the field culminated with the ultimate prize, the NRL Premiership Trophy.

“It’s been a very long time coming but seeing the Club win its first Premiership ever after all the highs and lows over the past 49 years shows me that perseverance and determination eventually delivers success,” she says.

Remaining unbeaten

On Jen’s left wrist, in small tattooed black text are the words Invictus Maneo. “It’s the Armstrong clan motto and it means ‘I remain unbeaten.’ It was my 21st Birthday present to myself.”

“It says a lot about me and what motivates me – I only wish I paid more attention to it in my marriage.”

Armstrong looks to new challenges in the future. “I think that so much more needs to be done about domestic violence at a policy level and I’m interested in exploring the possibility of ways to change legislation. Entering into politics at some point could be an option. I’m not going to rule anything out.”

Whatever the future may hold for Jen, she is determined to live life on her terms and be guided by a quote from a poem that she cherishes and keeps as her personal mantra: “You will not define me, I will define me.”

Source: Positive Influence – Supporting survivors of domestic violence