Inspirational Adelady, Annaliese Holland: “Being young and terminally ill is very different”.

Article by Carrie Raymond + Annaliese Holland

At just 23 years young, Annaliese Holland is facing the excruciating reality of being diagnosed with a terminal illness. There’s a lot she would like you to understand about palliative care, and what it’s like knowing your days are numbered.

Annaliese does not want her diagnosis to be in vain. She wants to leave a legacy by shining a light on this heartbreaking issue and by advocating for other young people who are terminally ill. She wants you to understand what it’s like to be in a hospice as a young person, and how imperative it is for these facilities to be given funding so they can provide support and compassion to people like herself. 

Dearest Annaliese — the word ‘inspirational’ does not even cut it. There has not been a dry eye in the office as we have all learned more about you and on a personal note, I’ve found it difficult to even find the words to do your story justice.

Adeladies, please take the time to read this story. Hug your loved ones and be grateful for the simple things. And above all, never take your health for granted.

One thing I can tell you about this incredibly courageous girl, is that she won’t be going down without a fight. 

Annaliese, can you tell us a bit about yourself and the devastating illness you are facing?

My name is Annaliese Holland, a 23-year-old Adelaide girl fighting for her life. I live with an incurable disease called AAG (Autoimmune Autonomic Gangliopathy), which means my body creates antibodies that attack my nervous system. I’m unable to eat or drink because my stomach and intestines are paralysed. This leaves me in debilitating pain, with a lot of nausea and I vomit up to 20 times a day. I’ve also lost 10ft of bowel which has required me to have multiple stoma bags.

Due to not being able to eat or absorb food, I developed intestinal failure, leaving me on TPN (Total Parenteral Nutrition) for life. I rely on being connected to an IV pole for up to 12 hours every night for nutrition and hydration, and have done this for 8 years. My AAG has caused bladder failure, requiring catheters and major surgeries as well as leaving me with Addison’s Disease, severe osteoporosis and osteonecrosis of my hips which in turn required screws and rods. Additionally, I’ve had countless blood transfusions, blood infections and brain swelling. I’ve had sepsis over 20 times which has left me in the ICU fighting for my life.

Laurel Hospice has allowed me some respite (focusing on comfort and symptom control), not just for me but also my family. The volunteers, the peaceful garden and the pet, art and music therapies have helped to put a smile on my face. Having never heard of a hospice before, I thought it was just a place to die, but it’s far from that. It’s a place of peace, love, comfort and happiness. 

Sadly, hospices rely heavily on donations, and as people barely know what a difference this makes, the donations they receive are minimal. That’s where I want to help — so that everyone has the opportunity to get the love, support and quality of life they deserve near the end.

This disease has robbed my young life and taken away who I am. But I’ll never let my disease define me because I’m more than my illness (I am Annaliese Holland)! A girl who loved to travel, exercise, study and eat lots of food. I was on my way to studying paramedics and planned to travel the world. But 8 years ago my whole world changed.

This is why I’m pushing myself to raise funds for THRF Group Palliative Care. I’m lucky to still have the use of my legs, arms and body (there’s people sicker than me or unable to walk), so I want to use this time to help others!

What do you want people to know about palliative care and young people in particular who are experiencing terminal illness?

Palliative care isn’t just for people who are old or about to die. People can be in palliative care for months or even years. One of the hardest parts of being in palliative care is that hospices are generally designed for older people – people who have lived their lives. Being young and terminally ill is very different. 

When people pass later in life they have more to look back on. They can be proud of the life they have lived and have memories to make them laugh and cry. But being a young adult, we haven’t had the opportunity to thrive in our careers, dated or gotten married. We haven’t had the chance to become a parent, travel the world, or create these lasting memories. Our lives have been robbed from us. 

Death is part of life for everyone and the reason it seems so scary is because it’s taboo. Most people don’t know when their day will be up. It sounds weird but a paramedic once told me that I was lucky to be thinking about my funeral. She said not many people have the pleasure of being able to plan one. Now that might be scraping the barrel for something positive, but it’s always stayed with me.

The sad part though, is that often it takes someone to die before we all come together and celebrate their lives. I believe in celebrating life before it ends, so everyone’s last memory of me isn’t being in a box with people feeling sad. I want to play loud music, dance, reminisce on the memories we have made and create more memories that make us smile. I believe in an end of life celebration before the end of life. 

Life is not about money or designer bags or shoes. When you are facing death, life is so precious and all we really need is love and health. Health is wealth and without our health there is no life.

No doubt there have been many very dark moments along your journey, but are there any times of lightness that you can share?

Helping others brings me lightness. 

It’s been a lonely experience — sometimes spending up to 9 months in hospital with not one visitor. Being a young girl it was painful watching me lose who I was. My teeth and hair were falling out from intense treatment and I had severe fluid retention from high dose steroids which was changing my body. 

I also had guilt for the pain my family was dealing with. My dad had to give up majority of his work and sell things to pay for my medications and surgeries. They became so run down and exhausted and I couldn’t help them. But I didn’t want to sit on my ass feeling sorry for myself, asking for pity or making my life all about being sick. Instead, I watched many other patients and families going through the same thing, all in similar positions or worse. 

Originally, I didn’t want to talk about my illness because I didn’t want pity, but I finally started talking about it last year after becoming terminal. I sat there wondering why I was put on this earth for such a short time? I decided, why take my story to the grave when I could at least help one other person? 

My legacy is to help others, I don’t want anyone to suffer what I’ve been through. That’s why I advocate — because there are thousands of others out there like me. I would take their illnesses any day just so they could live. The only way is to support one another. Like I always say, it is what it is and what’s happened has happened.

There’s so much sadness, selfishness and anger in the world these days. I believe that we should all be kind and gentle towards each other. And spread love. Smile at everyone walking past. If you think someone looks nice, tell them and spread some love because what might seem like a small thing can be a huge thing in someone else’s life.

Whether it’s reading a book or chatting to a friend, most of us have a go to ‘pick me up’. Do you have something you turn to to put a smile on your face?

My mothers words of wisdom certainly adhere to life. “Your health is your wealth, it is the jewels in the crown, love & community are the cloak wrapped around. Everything else is a bonus”.

These words are so true. My one wish, (besides the obvious of my own health), would be to see everyone equally able to have the immediate healthcare they need and to be treated with compassion, validation, dignity and respect. Also, for no one to be isolated in society or feeling lonely, particularly while ill. 

My aspirations come from the beautiful Michael J Fox who says he went from patient to advocate in a day. His feelings of being able to serve and being able to share his story (as uncomfortable as it is), is a tremendous privilege.

It’s not monetary things that bring me joy, it’s the greatest gift being able to give back to others. It’s my ability to share my company, and give through charitable work. My family are the most important things to me along with my pets and the freedom of being outdoors in nature. This is what makes me smile and brings me joy. And everyone deserves all that.

​​If you could have one wish to make the world a better place, what would it be?

I’d wish to get better and for no one to ever have to face this awful fight. I’d wish illness didn’t exist and that the stigma and loneliness of illness didn’t exist.

Also I’d wish to spread love. To smile. To ask others if they need help and to help others without ANYTHING in return. To create a community where we build each other up rather than bring each other down, because everyone is going through something — so just be kind.