A 25-year-old woman has opened up about her decision to end her life using assisted dying after living most of her life in excruciating pain.
Annaliese Holland, who is from Adelaide, South Australia, revealed why she is set to pursue voluntary assisted dying after being diagnosed with a rare and incurable condition.
The young woman revealed that she’d spent most of her childhood in and out of hospital, suffering from an unknown illness.
She dealt with a mass of symptoms, including chronic pain, nausea, and vomiting a her health declined significantly over the years, including needing to be fed through IVs on total parenteral nutrition (TPN).
Annaliese’s condition had baffled doctors and it wasn’t until she was 18 years old and transitioned from a pediatric facility to the general hospital that she was finally diagnosed with autoimmune autonomic ganglionopathy, a rare neurological disease that damages the nerves that control heart rate, blood pressure, digestion and urination.
Explaining some of the most drastic symptoms she experiences, Annaliese told News.com.au in a new documentary: “My bowel acts as if it’s blocked but there’s nothing actually blocking it. It’s just the nerves don’t work so, as gross as this is, my stools would back up so much that I would throw it up or drain out my tummy.
“I had feeding tubes placed in me and I was still vomiting and then we discovered that my stomach wasn’t emptying so I was put on TPN. Because the line straight into your bloodstream, if you get an infection it turns to sepsis really quickly which is very, very, dangerous.”
By the age of 22, Annaliese was tragically told that the condition was terminal, and she is now dealing with multi-organ failure after having survived sepsis 25 times.
As well as the deterioration in her health, the medications Annaliese is on have also worsened her condition, as she has developed osteoporosis which led to her fracturing her spine in four places, cracking her sternum in half, and almost crushing her heart and lungs.
Steroids that she takes to help manage her symptoms have also caused necrosis – a condition where blood supply to the bones has failed – leading to her teeth becoming discolored abd beginning to fall out.
Annaliese admitted: “I was so miserable. You can’t change it so you have to just deal with it really. Even though there’s beautiful moments in my days, they are exhausting and long. I’m in chronic debilitating pain.”
She revealed that her health battles have forced her to miss many milestone moments in her young life, from 18th and 21st birthdays, as well as formals, graduations, and other big events as she was in the hospital.
“All my friends, they’re having babies, getting engaged, married. Everyone’s life is moving and I’m just stuck. I’m not living. I’m surviving every day, which is tough,” she explained.
Annaliese likened the condition to “walking on a field of landmines” as her life revolves around managing her symptoms with medications and just “trying to get through the day” before going to sleep, only to wake up and have to do it all over again.
She has now reached the stage where she does not want to endure the pain any longer, and has chosen to “die on [her] own terms” with medical assistance.
“I have the most incredible team of doctors and nurses who have watched what I have been through and I told them I don’t want this anymore,” she admitted.
While Annaliese has chosen to pursue voluntary assisted dying, the decision has not been easy on her family.
Annaliese’s mother, Amanda, admitted that she still hold out for a miracle to cure the condition, but “knows realistically” how difficult her daughter’s daily life is.
Her father, Patrick, told the outlet that he has watched her overcome every hurdle thrown her way so far and believes she can get through anything.
Patrick explained: “Every time she goes to the hospital, she fights for her own life. The amount of times Annie has been in hospital and on her deathbed… to have to sit there and watch her go through it … but she is amazing.”
Annaliese added: “I remember talking to my dad in the kitchen one night and I said, ‘Dad, I’ve had enough.’ And he went, ‘So you’re giving up?’”
She revealed that the turning point for her father to finally come to terms with her decision was when he saw her after she had been resuscitated by the doctors and she pleaded with him: “Dad, please let me go. I will not hate you if you let me go.”
“I said, ‘If this happens again, I don’t want anything. And please know that in my heart, you letting me go and saying no to treatment… I’m happy with and that’s what I want,’” she recalled, through tears. “He turned to me and goes, ‘I don’t know how you do it and I totally understand that you’ve had enough.’”
Annaliese then went through discussions with psychologists and an extensive qualification process, and found out three weeks later that she had been approved for voluntary assisted dying (VAD).
VAD and medical aid in dying (MAID) are legal in every state in Australia for people who are living with a terminal illness and involves the patient administering themselves with drugs prescribed by a doctor to end their lives, whereas euthanasia – where the drugs would be administered by a medical practitioner rather than the patient themselves – is illegal.
Describing the option as a “safety blanket” for when she is no longer able to bear the condition, Annaliese admitted: “I think it’s so weird to be happy, but I was so happy when I found out I was approved, I was crying.
“It’s hard because for me I am in pain and then I am at peace, but then I put the pain onto my family. You have this battle in your head of not wanting to hurt them so I will put some thought into how it will happen.
“For me, I don’t want to have to wake up every day with anxiety about the pain that I know is ahead for me. The pain of starving to death when they can’t feed me anymore, or the horror of sepsis.
“Knowing I can go when the time is right is just a huge relief. I feel so lucky that I do have this choice.”
Annaliese also hit back at the assumption that choosing medically assisted dying is akin to “giving up”, explaining: “It’s one of the bravest things you could ever do, to say I want VAD. It’s not giving up. You’ve had enough and you fought bloody hard.”
