Watch and read Kylee’s story documented in 2019

Kylee’s eligibility under the End of Life Choice Act:

Kylee has Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder. It is an incurable and degenerative medical condition characterised by joint hyperlaxity, skin hyperextensibility and tissue fragility. She experiences daily joint dislocations and chronic, sometimes intense, pain. Because her internal organs are declining in their ability to function properly and she frequently experiences potentially life-threatening complications, Kylee’s condition is also terminal. Many medical professionals would consider Kylee eligible for euthanasia or assisted suicide under the End of Life Choice Bill, and especially when she is experiencing a life-threatening complication associated with her condition. Kylee ticks all of the eligibility boxes: the criteria for both “terminal illness” and “grievous and irremediable medical conditions”.

Choice is a relative term – Kylee’s Story

Kylee Black, 32 years old from Hamilton, is an extraordinary New Zealander who, against all odds, manages to overcome adversity and prove that even in the bleakest of situations there can be life and hope. If there were a poster child for pain, it would be Kylee, but she can equally be described as a beacon of light through whom many within the community find empathy and understanding.

Kylee was an adventurous child who was determined to push herself to the limit. She was the girl who wanted to swing the highest, run the fastest and try just about anything. Her passion also extended to dancing – she loved the freedom of movement and the artistic expression.

However, it was at Kylee’s dance lessons that red flags were first raised. Kylee was reprimanded by her teacher for not standing up straight, although she was standing up straight. She was unaware that her spine was actually crooked. What seemed like odd little things began happening: tripping and falling, constantly scraping and skinning her knees, breaking bones... all of which soon pointed to more than mere coincidence and a clumsy child. Her innocent and carefree childhood, full of hope and wonder, took a turn that blindsided Kylee and her parents.

Doctors’ appointments became a constant sequence of uncertainty and disappointment as Kylee’s parents desperately tried to get to the bottom of what was happening to their beloved daughter. Doctors would tell Kylee that her body “just wasn’t like other kids’ bodies”, but without any explanation. This left Kylee confused much of the time, and soon she began to feel it was somehow her fault. Doctor after doctor, month after month, and year after year of seeking answers finally came to an end when her symptoms were recognised as evidence of Ehlers-Danlos Syndrome.

Simply put, this is a connective tissue disorder. Collagen is what holds cells together in our bodies. However, a piece of Kylee’s DNA is missing which means that the collagen in her body is not structured the way it should be. Every part of her body is affected. Her joints dislocate and sublux (partially dislocate) daily, resulting in severe nerve pain. She faints when trying to stand too long since her blood vessels struggle to contract and push blood back up to her heart. Her internal organs are stretching to the point where her gastrointestinal and bladder systems no longer function as they should. Because it is a degenerative medical condition, Kylee has had to watch herself deteriorate over the years, knowing that each stage will cost her some much-valued independence. The vivacious girl who once knew no boundaries has been forced to embrace the stark reality of pain with all
its limitations.

Kylee now uses a wheelchair. Many everyday tasks that others may take for granted, even swallowing food, are a challenge for her. It takes much determination to face each day.

“Kylee has experienced dark places mentally, especially when her condition has been difficult to manage. ”

Some days she gets upset, processing the raw emotions arising from the challenges she faces. She allows herself to grieve the losses of independence and the fact that her condition is terminal. But once she has done this, Kylee makes the choice to move forward; to go on living. And rather than being defined by what she can’t do, she is determined to focus on what she can do.

Kylee does not hold back on how she feels while advocating for herself and the wider disabled community, and the pressure the proposed Bill has already put on them. “The Euthanasia Bill is confronting. It’s like having it in my face... and it’s not even legal! Trying to get through the hard days is hard enough without having to fight against the possibly that euthanasia might be an option. The pressure I start to face… how do I find the strength to keep pushing back on that!? Where does that leave me and my disability community?” asks Kylee.

“Having to consider things that I never have before… the cost of treatment… am I worthy of it? Should I have it, or am I a burden on society?”

Already there are growing fears and vulnerability felt by herself and others. Kylee wonders what would happen if on a particularly hard day, a doctor were to raise the issue of euthanasia. The words and views of doctors undeniably carry great weight with their patients. If a doctor would suggest euthanasia as one of the options available, as would be required by the Code of Health and Disability Services Consumers’ Rights, it would lead to very real pressure, whether intended or not.

“A lot of people agree with euthanasia ‘in principle’ without understanding what that means. People say that you have a choice… but choice is made in context! Not everyone has the same level of choice.”

Kylee freely acknowledges the advantages of having a mother who is by her side every step of the way, and also of having the necessary supports to enable her to enjoy day-to-day living. She is well aware, however, that many disabled New Zealanders are not as fortunate. Lack of finances, pressure on family members, and the constant worry about accessing the necessary resources already do not make for an even playing field. Let alone, how easy it would be for someone with these situations to feel as though they don’t have a real choice. Instead, they may feel obligated to make things easier for others by opting for euthanasia. “We need to make sure that we have the right supports around people first, before we’re having a conversation about euthanasia,” warns Kylee.

The problem is not only that the legalisation of euthanasia would put pressure on some vulnerable people to request it, but also that as a society we would become less resilient and less able to bear the weight of supporting those who do not wish to request it.

As the Bill stands, if Kylee was to pursue euthanasia she would be encouraged to talk to her family about it, but wouldn’t be required to do so. So, if on a dark day when the pain felt overwhelming, Kylee could choose euthanasia, and the first that any of her family would know about it would be when they received her death certificate.

She points out, “With euthanasia, it is so final. No second chance, no coming back, and many people who are given six months or less to live are still here two, five or even ten years later. And for those who choose euthanasia in that situation… that’s it! You miss out on all that is to come. The families also have a process to grieve as well, and to question, ‘could the doctors maybe have got it wrong?’”

Kylee is concerned that legal assisted suicide would undermine suicide prevention when New Zealand already has a concerning suicide rate.

“The irony is we’re having a conversation about young people and suicide and yet on the other hand, we’re saying it’s okay to want to end your life. What is the message we want to tell our young people?”

She fears that such a law would create two classes of young people, both of whom presents with symptoms of depression, but with one group offered counselling and the other lethal drugs.

“Two young people with depression walk into the doctor’s asking for euthanasia. The one with a medical diagnosis that makes them eligible must be referred on by their doctor for euthanasia, while the one without such a diagnosis gets referred on for suicide support,” she argues.

In Kylee’s view, it wouldn’t necessarily be her disability or medical condition that would be causing her suffering. It could be her mental health and headspace… but hang on, it could be that depressed person’s headspace too!

Kylee’s mum, Dianne, who was at the bedside of both her parents and her brother as they passed away, says, “That’s painful and that hurts and, of course, you don’t want your family to suffer, but I think the implications of this Bill are wider than that!”

Despite her deteriorating health, her pain and struggles, Kylee feels that she still has an amazing life. Dianne adds, “Despite the health issues, Kylee is still the same person she always was. Those traits are still there. Even in her pain and her confusion, her frustration… all of that… she still wants to be out there… helping somebody else.” Many who know her are grateful for the support and kindness that Kylee shares so freely as she reaches out to others who are struggling, runs events and advocates for others in the disability community.