Happy Freedom Day!

Happy Freedom Day!

So happy it is weekend. My week started badly. Getting out my car to do a home visit, a Zulu woman greeted me warmly with, ‘hello fat lady’. She actually held out her arms to demonstrate just how fat! Apparently in Zulu culture it’s a compliment. But the mix of cultures is just one part of South African life that I love.

It is a beautiful country. A drive to work with a frequent sighting of zebra or giraffe brightens my day. Fighting with a cow or a goat for a parking space, is less fun but still beautiful.

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South Africa is a land of people crazy enough to eat koeksusters – deep fried doughnuts drowned in sugar syrup. A place where you can order a side of ‘walkie talkies’ which are fried chicken feet, with your stew.

It’s a magical country where you wouldn’t be surprised to see news headlines such as ‘dead man dies again’ or ‘ghost children claim social grants’.img_20190416_122925_resized_20190418_115039043.jpg

Of course there is plenty not to like.  Recent floods have highlighted not only the vulnerable conditions in which so many live, but also the pollution and litter problem. The crime is truly horrendous; we live with house alarms and electric fences. We even have to label the stools outside home affairs asking people to not steal or abuse them! Our public services are corrupt and inefficient. I have tried 4 times to get a new identity document – each time queuing in the unbearable heat and not even making it inside the building.IMG_20190418_110619_resized_20190418_115038914

But it was standing in that home affairs queue, that I really had time to reflect on just how wonderful this country really is; such a mix of ages, cultures and races, chatting and enjoying the water and sweets handed out by a self-appointed service delivery volunteer. There is nothing like shared suffering to promote comradery.

Today, on the 25th anniversary of the first time people of all races were allowed to cast their vote, my Facebook news feed is full of positivity and South Africans doing ‘their bit’. There was an army of volunteers collecting litter on the beaches today and multiple collection sites for food and clothing items for the flood victims. The country is full of amazing people doing incredible work with children, the elderly, animals, literacy, hunger alleviation, gender equality – too many to mention. All of this leaves me #Hopeful and #ProudlySouthAfrican!

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So Happy Freedom Day South Africa full of hope and promise!

Love this video of hope #hopejoanna

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Burning the Laptop?

I have just realised that this is the first time I have written this year. Oops, it is already April.  I guess I am trying to work out where the time went? Or maybe I am just tired. People are tired. Emotionally drained. Aren’t you just so tired of being tired and busy?

I’m having such a busy year. In fact that my ADD is playing up something terrible. I managed to accidentally book myself to run a workshop in Johannesburg, at the same time that my BFF would be on holiday in Durban, at my house! Today I am on a flight from Durban to Jozi but only just… Why? I managed to book the flight in the wrong direction. And my poor laptop is bearing the scars; I burnt it on a candle while working in a hotel restaurant. I now have a permanent black mark on my screen! There has to be a GIF or a meme for that somewhere.

The reality is that my situation is not that different to everyone else. Everyone is busy. Everyone is tired, perhaps apart from those awesome folk who like kale, jogging and yoga with some mindfulness in between.

The problem I am facing is the reason I am busy. I am busy because I don’t get to just do my job. At Umduduzi, Tracey and I spend most days working with seriously ill children and their parents, attending advocacy meetings, teaching health professionals and medical students and then we go home and come up with fundraising ideas.

I find myself wanting to yell “but I am just a doctor.” Too bad Julia. This is a path you have chosen (and here I hear my mother’s voice) because you believe in the work you do. And I really do, passionately. However, it is not sexy work. It’s not feel good stuff. No one wants to talk about seriously ill children that may suffer and that may not get better. No one really wants to think about it. I don’t even like talking about it. It is a serious conversation killer…Picture the scene:

Stranger: So what do you do?

Me: I’m a doctor.

Stranger: Wow, that’s amazing. What is your specialty?

Me: Ahem, (clears throat) Well, (pause) I provide care and support to seriously ill children, most of whom won’t survive.

Stranger: oh, oh, wow, that’s amazing (strained tone). You must be such a special person.

And so, fundraising, which is always difficult, becomes even more so.

Sadly, one of the communities that has supported us enormously in the last 5 years, has been on the receiving end of tragedy after tragedy. Emotionally draining because everyone cares so much. Everyone wants to help. And yes people are busy; very busy with their own lives.

Where it ends in a beautiful crazy country like ours, who knows, but NGOs like ours need help. While we are delighted with every toy and stationery item we receive, we need money. We need to give our team members a salary raise, we need to hire more staff. Bottom line, we need money to provide our professional service.

We can look to the government and say, “You should be funding this.” They know. And contrary to popular belief there are some beautiful people doing a phenomenal job in the Department of Health. And slowly things are starting to change but there is a long way to go with a massive list of competing priorities.

So the challenge is out there. Here are 5 ways you can support your chosen NGO: (preferably us!)

1)      If you read this and you don’t have a MySchool card. Get one. It costs you nothing and you can swipe it at a number of stores. https://www.myschool.co.za/

2)      If you have a spare R100, a month donate it. Sign up to an organisation that you believe in.

3)      If you don’t have spare cash but like spending time with friends, host a small ‘Crumbs for Comfort’ event. http://www.umduduzi.co.za/crumbs-for-comfort/

4)      If you have spare cash and like spending time with friends, hold an expensive ‘Crumbs for Comfort’ event. http://www.umduduzi.co.za/crumbs-for-comfort/

5)       And at the very least, get vocal – share the posts on social media, like every post you see and tell your friends.

With that, I am going to bed and really hope that I have booked a flight in the correct direction tomorrow!

Thriving, not surviving

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Click on photograph for linked article. 

March 28th 2018 was a joyous day; we officially launched our early childhood development program at our local multi-drug resistant TB unit. There were speeches and thank yous, singing and dancing -brand new clothes for all the children – Overall a heart-warming and happy occasion.

As we were winding down a woman came up to me with tears in her eyes. I paraphrase –  “I cannot thank you enough for what you are doing here. I work with children with this disease all over the world. So many of them are locked away. To see the love and joy here is amazing. Thank you.”

I was stunned. I had never really thought about the fear and the stigma associated with this difficult to treat and yet curable condition.

This woman is Dr Jennifer Furin, director of capacity building at the Sentinel project, (www.sentinel-project.org) a global partnership of researchers, caregivers and advocates who share a vision of a world where no child dies from this curable condition.

On reflection it is true. People are scared. We often have folk wanting to volunteer with the kids until they hear that they have drug resistant TB.  Pharmacist and MDR TB expert Nirupa Misra in her speech said, “You are more at risk of contracting MDR TB in a taxi. The kids in the hospital are all already on treatment and therefore less infectious. “

With all diseases, at Umduduzi we believe it is not about surviving, but rather thriving. All children need to access play and education. They deserve a right to thrive with good quality of life even when faced with serious illness and horrible circumstances that leave them hospitalised for months and months. It is time for a paradigm shift.

I love this definition from the World Health Organisation – Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

 

 

Surviving the Health Care System – Patient Rights

It is Human Rights Day in South Africa – one of my favourite awareness days of the year. Yes, yes, largely because it is a public holiday but also because it gives us a chance to reflect on the past and look to our future.

After a discussion with a mom and dad the other day, I started to think about Umduduzi’s mission statement which goes like this…

Mission:

We bring compassion, dignity, relevant care and relief from discomfort and pain to children diagnosed with a life threatening or life limiting illness within KZN. We do this through direct patient care, mentorship, empowerment of caregivers, training and advocacy.

So what do we mean by ‘empowering the caregiver’. When we wrote this statement the idea was to support parents (or caregiver) to cope with their child’s condition and to empower them to manage the child’s symptoms and disease. It is about giving them choices and control at a time in their lives when everything feels out of control. They are living a hell they wouldn’t have chosen for themselves.

This conversation prompted a deeper thought.  An enormous part of managing your child’s illness is negotiating the healthcare system; appointments, blood tests, treatment options, costs, transport, and what you are entitled to.

From feedback over the years, perhaps the worst and hardest part is dealing with multiple specialist doctors and their ego’s – being sent from pillar to post between doctors who don’t communicate with each other and the intimidation of the hierarchical structure and consultants who don’t like to be questioned.

The state and private sectors in this regard are equally as bad. And although there are exceptional exceptions and doctors who are kind, caring and approachable, encouraging parent involvement and engagement, most seem to be trapped in the importance of their own business and forget that each child and family are individuals. There is an inherent arrogance in the health care system that can cause secondary injury to an individual who is suffering already.  You can almost hear the sound of ‘we are trying to help you so you better do what we say regardless of how that affects you or your life!’

So perhaps this Human Rights Day we need to start thinking about how we facilitate patient and parents’ rights. How do we empower the parent to tackle the system and the providers in a constructive and positive way?

I would love to hear from parents and family members – what do you wish you had known when you started your journey? If something could have helped you, what would that be? Perhaps there is a booklet here – Forget your child’s illness – how to manage (or survive) your doctor and the health care system!

Happy human rights day!

Being ‘there’ – palliative care

A year ago I wrote a blog trying to explain what we do- what do we actually do in palliative care? But still folk are confused so here we go… I quite like this recent definition coming out of the USA.

Palliative care is specialised medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

So how does this translate into real patients and families?

It has been a tough year so far. We have said good bye to too many children, some whom we had known for years.

Amazingly it’s never quite how or what we expect.

‘Peaceful’ I will call him, was a beautiful child with an exceptionally rare progressive disease. He outlived his prognosis by years – I had almost started to question the diagnosis! Month after month they would attend the palliative care clinic, and he would just lie peacefully in his mother’s arms. He never complained or moaned. Just peaceful. During this time we helped the mom comes to terms with the fact he wouldn’t survive and supported her emotionally to live with the uncertainty of how that would look. We managed his itchy skin and his chesty cough and helped the mom to decide when to seek medical help. We gave her as much information as we could to help her cope. We found him a pram when he got too heavy to carry. Largely we were just ‘there’, a visit or a call away.
He died very suddenly at home a few weeks ago at the age of 5. Since then we have provided the mum with bereavement support and a home visit. That will be ongoing as long as she wishes.

‘Sunshine’ was a gorgeous girl, full of joy and brightness. She touched every life around her. Despite years of unpleasant symptoms and treatments she always arrived with a smile and usually some sweets for the doctors on call. There was nothing like a sunshine hug to make my day. Sadly ‘sunshine’ had a difficult few months at the end, but again, having known her and the family for many years we were ‘there’; from casual chats to more serious discussions about yet more bad news; getting her assessed and supported when she wasn’t coping at school; allowing her to express her feelings and worries; giving the family options about where she should be when she died; visiting at home to make sure she was comfortable and that the family were coping; answering WhatsApp questions when things felt too much or too confusing.

There have been many more of these amazing children living, surviving and thriving for years with their rare diseases.   Sadly dying comes too soon for many. But it is in the way these children and their parents live that they teach us all so much. Palliative care supports that.

So perhaps it is as simple as that. Palliative Care is being ‘there’ whatever that looks like.

 

 

 

 

 

Meaning out of Loss

This week I had an amazing experience. Not only does South Africa have a new president and a new hope, I helped deliver food parcels to 10 different families. Not our core business at Umduduzi – not at all, but it certainly lifted my spirits.

People always ask – how do you do your job? Isn’t it depressing? The truth is that working with sick children is difficult emotionally but it is certainly not depressing. The families we work with are incredible; passionate, emotional, resilient. Each one has their own story and journey that must be followed.

I love my work. Watching the grace with which these families handle the extreme adversity they face is a daily dose of humility. However the thing that will burn me out long before disease, dying and death is the poverty and dire social circumstances our families often face.  Most mom’s cannot work because they are caring 24/7 for their precious children with special needs. Getting to all the hospital appointments alone can be enormously challenging. I can prescribe and deliver the morphine to a dying child’s bedside but when there is no food in the house? I feel so helpless and lost.

So how did I get to be delivering food parcels?

A dear friend Blake, lost his son in December to a chronic illness. In his honour, Blake has started the Junaid Foundation. He is raising money to assist families with sick children in need. Knowing I know numerous sick children dotted around the province we joined forces and went road tripping. I got to check up on my patients and Blake got to bless each family with a wonderfully heavy bag of goods. Thank you to some other wonderful donors we delivered 3 prams to babies with cerebral palsy and every child got a beautiful knitted blanket courtesy of the ‘Granknits’.

It is not Umduduzi’s role to provide food so we are delighted to work with organisations such as the Junaid Foundation and the Lamees Ryan Foundation – beautiful people doing beautiful  work for beautiful families in need. All of the time making meaning out of their terrible losses.

 

 

 

Is it still a man’s world?

Ugh. I feel sick.

It’s woman’s month in South Africa and the press is full of stories about women being assaulted or beaten up by men.

In the last few days: A metro police man playing golf on his day off chose to verbally assault a group of female players (it ended in violent fisticuffs). A high school boy is caught physically beating a girl on camera at a local Durban school. A group of men beat up a heterosexual couple in a KFC drive through. A male politician slaps a woman for calling him gay.  Seriously?

These are all horrifying stories of violence,  but it is so much worse than simple male brutality or gender violence which is a shameful reality of the society we live in; here and abroad.

I don’t want to be patted on the back for ‘making it’ in a man’s world. When are we just going to get excited about talent and hard work?

I have two sons who are both well above average in intellect  (yes, yes proud and biased mom). Do I want them to compete in the world as men? White men? South African  Christian white men? How ridiculous! Surely as an awesome mom I want them to find their place in the world as themselves. If there is a Hindu woman of mixed Australasian decent who is more qualified than my son – give her the job!!! It shouldn’t matter.

I have just read the ‘note from the chairperson’ in the magazine of a local airline; contributes to my nausea…

Woman’s day in South Africa pays tribute to the 20 000 heroic women who in 1956 marched to the Union Buildings to protest the extension of the pass laws to women.

The article goes on to say that as the airline, they had only 4 female technicians in 1994, but now they have 114. They even have 69 female pilots. Of course total numbers are not mentioned. Is 69 a lot? Are we meant to be grateful? Blegh.

The fact that 61 years after the heroic march we are even still talking about women’s progress in a man’s world is just so sad.

Enough! I want to be a mom. A good mom who had no regrets about missing my children’s childhood because I was chasing  my passion and career in children’s palliative care. I want to have it all and not be judged. Surely I can be awesome if I do  both part time? What about those dad’s who want the same? Or is that not manly enough for society? Sadly financial pressures often make this impossible but gender should not matter.

I see that a cafe in Melbourne, Australia has instituted an 18% ‘man tax’ as a way of highlighting the gap in salaries between men and women. The men have to pay 18% more for the same food and service.  How is it possible that in 2017 one’s gender determines one’s salary.? Truly infuriating, but sadly it’s a true story.

Ok. I’m getting dizzy from the rare air up here on my hobby horse. Dismounting! But one final point. Both men and women contribute to the ongoing gender inequalities and attitudes. Time to evaluate?

Have  great weekend and wmen’s month!

 

 

Perspective

Mesmerised.  The depth, the width, the breadth. High above the ocean, flying home after a frustrating 24 hours of airports, bad service and little irritations. But that’s all noise. Up here it’s so quiet. Just the hum of the plane and the most spectacular views of coast, sea and clouds.

The sun is rising over a dark grey ocean.  Flickers of silver, yellow and gold dance on the water below me.

I feel so small. So insignificant.

‘So’, you are thinking. ‘She has finally lost it’.

Well don’t panic. It’s a short flight and soon I will be landing back in Durban where this quiet moment of peace and reflection will be nothing but a distant memory swallowed up in the chaos that is my life.

My taxi driver in East London had never been on a plane. He said, “my place is here on the ground. When something bad happens on the road you can get out the car and run. Where are you going to go when you up there?” We both laughed and I thought how lucky he is to not know what it is to have a flight cancelled with no explanation, no apology; to not spend hours and hours waiting for better days at an airport.

Seriously? I love flying. It is a privilege to see the world from a different perspective. To be stuck in a chair with nothing to do and no where to go trusting in a huge metal bird and a pilot to get you where you need to go.

I read an article yesterday – the key to happiness is acceptance. Very zen. And yes, I had a lot of time hanging round airports… It made me think of a beautiful family that have just lost their precious child to cancer. Their devastation and agony is very apparent and yet I would not call them unhappy. During his illness they accepted their situation and managed it with grace and skill, ensuring his last weeks were filled with a lot of love and even fun.

Talk about perspective.

It doesn’t mean I don’t get to be frustrated by poor airline service and bad communication, but some things just are what they are.

Kind of makes me think of this well known prayer…
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