I like to interview people who use their experiences to help others. What can I say, spreading a bit of positivity in the world is needed right now. The people I interview are incredible – their positive attitudes and the inspirational, ‘you can do it’ nature of their stories makes a difference in the world.
Amanda’s story makes a difference in the world.
Amanda is an Australian living in Scotland with her husband and two rescued Romanian street dogs, Harry Potter and Angie. Despite confessing to watching too much Netflix, Amanda is a busy woman. She is the owner and founder of pandatees.co, an online clothing website that creates designs for those with rare diseases, those lacking representation in society and those using their voice for positive change in the world.
Amanda is someone that fits into all three of those categories. A cancer survivor, a wheelchair user and someone adamant about using their voice, she is someone to know, to support and to applaud. She is someone making a difference.
In your own words, describe your health battles.
Devastating. My health deteriorated in such a short period of time and no one knew what was happening to me. Between when I first saw a doctor and when I went to the emergency department, I lost the ability to walk, had little coordination, slurred speech and I struggled to roll over in bed.
I was diagnosed with Paraneoplastic Cerebellar Degeneration, a rare autoimmune disease where your body creates an antibody to fight cancer but gets confused and attacks healthy cells, in my case the brain. We tried a few different immunosuppressants with no improvement, then 7 months later we found cancer in a lymph node in my armpit, but no primary tumour was ever found.
After successfully treating the cancer with chemotherapy, radiation and a preventative double mastectomy with no reconstruction, the neurological deterioration slowed down. I have daily symptoms, but I’m thankful because it could be a lot worse.
How have these illnesses impacted your mental health?
Your physical health and mental health are connected, so how could it not be impacted? When I got sick, I was in a dark place both physically and mentally. Not being able to easily leave the house made my world incredibly small and because of that I have debilitating social anxiety.
It took a lot of time, therapy, work to get to a healthier place. You need to put the effort into getting happy and healthy, but you can get there.
Your health took a very dramatic and sudden turn, so I imagine that there has been a big adjustment to the way you live your life. Since becoming a wheelchair user, have you noticed a change in how society treats you?
I’m under 50 with a wheelchair so people tend to stare and ‘ask what happened to you?’ because it’s not the ‘norm’. At first I was embarrassed and ashamed, but you have to learn to not let it get to you. A wheelchair means freedom and it’s not something that we need to feel ashamed over.
Now it just angers me how inaccessible the world is. Accessibility isn’t just an afterthought. I’ve summed up some of my thoughts about Ableism in the product description of my Fuck Your Ableism t-shirt which you can read here.
You are very open about your difficult experiences on social media. Why is it important for you to share all aspects of your life, even the bits that are hard?
I think everyone in life has positive and negative experiences. Social media makes my struggles more visible. When I got sick, I pushed people away and because of that I’ve realised that people want to connect with others on a fundamental level. You are drawn to people going through the same thing as you, so I started my health account to reach out to other people who have the same disease as me.
When I got sick, it felt like my life was over and I became depressed, so if I can help even one other person recognise the symptoms of paraneoplastic and get medical help before there is permanent damage or feel like they aren’t alone then I’ve made a difference. Social media meant the world to me when I was recovering. I was house bound so it was my only way of connecting with people for support. Now, instead of taking support, I’m in a healthier place where I can give it back.
You have recently started your own business, Pandatees, designing and creating T-shirt’s with important messages on them. How did you come up with the idea?
I started selling t-shirts and apparel on pandatees.co to raise money for an electric wheelchair because I recently had to return my government sponsored custom wheelchair when I moved to the UK. The name took a lot of brain storming to come up with something so simple, but my closest friends call me panda so it seemed an obvious choice.
After I reach my personal fundraiser goal, I want to continue pandatees.co and will donate a percentage to Eurordis, a non profit for rare diseases awareness and advocacy, a subject very close to my heart.
Pandatees is a really brilliant idea. Beyond being able to fundraise for important causes, what is the significance of your designs?
People with chronic illnesses, body differences and disabilities are underrepresented in society, so I design with them in mind. My ‘Wear Your Voice’ slogan is all about that. I really hope that my designs, which feature spoonies, rare disease sufferers and others feel like they can relate to my designs and wear them to express that part of themselves.
I want to make a difference in people’s lives. I want to support and empower the chronically ill, anyone with disabilities, any groups who are made to feel like they don’t belong or feel like the aren’t important. It’s all about learning to love yourself, really. My ‘Mirror Mirror’ design is all about that. We have to look at who we actually are and learn to love that reality before we can grow.
You have overcome so much in your life. How has surviving cancer and experiencing the difficulties you have gone through changed the way you look at life?
I care less about the small things. I used to read gossip news regularly, but my perspective on life has changed and none of that feels important anymore. Life is short, and so much of it is out of my control. I know I can’t stop bad things from happening to me or the people I care about. The only thing I can control is how I react.
Aside from that, I try to build routines. Sometimes my emotions can be up and down, but having structure helps me make consistent progress and helps me manage my anxiety.
You have just moved to Scotland and opened up your own business, so it is a big time of change in your life. What are you most looking forward to in the future?
In general, I’m excited about the future. I’m looking forward to reaching my personal goal then be able to donate some of the proceeds to Eurordis.
If you could sum up your outlook on life, what would it be?
Life is like an ocean. Sometimes it’s powerful, chaotic and dangerous, sometimes it’s calm and peaceful. What’s important to remember is that all storms end eventually. When I was first diagnosed, my doctors couldn’t answer any of my questions. My condition was too rare. I knew it was serious, but I had no idea what the long-term outlook was. Depression and anxiety set in and at times I felt truly hopeless… but eventually my questions had answers. It became clear that I wouldn’t fully recover, which was sad, but it also ended the uncertainty and I could start setting new goals.
My old life is gone. I’ve started learning how to accept and embrace my new one. My husband and I have started traveling again, I do regular physiotherapy to build strength and stamina and make small, incremental, functional improvement. I started my business. I moved to Scotland. I’m living my life again, and for the first time in a long time, I’m excited about the present. The storm has finally settled.