Kylee Black is a 31-year-old from Hamilton. She is the oldest of four children, with two brothers and a sister. She has a Diploma in Communication and Expressive Arts from the Bethlehem Tertiary Institute, Tauranga, as well as a Certificate in Film and Television through Lifeway College.

Kylee has her own public speaking brand; KyleeBlack, where she empowers and encourages others, and advocates for equality. She is the founder of Spirit Sparkplugs, an organisation that works to improve the lives of people living with medical conditions. Kylee lives with Ehlers Danlos syndrome, Complex Regional Pain syndrome, and other diagnoses. These conditions require she be tube fed, have an ostomy, and a portacath. She currently lives at her home in Hamilton.

I’ve learnt effective tools and have put things in place to be living my best life. Some of the things I love and find most important to me and my wellness are the connections I make, especially with friends and family. They are everything to me.

My flat in Hamilton is my home, it’s my little piece of paradise, where flatmates, family, friends and neighbours are all called family. We have created a loving environment with an open door policy where anyone who walks into our home is welcome and can feel safe. It’s a very positive space with every wall plastered with quotes and pictures, giving us constant, encouraging reminders wherever we look. With a backyard occupied by chickens, a vege garden and fruit trees in the centre of Hamilton city, it’s what I call my piece of paradise.

Every day, I pay attention to the little things that I have in life: the sunrise, a flower, a nice breeze. It improves my whole outlook. I start every morning with what I call “Kylee’s Gratitude List”, which is usually 10 things. Sometimes I push myself out to 15, 20 or 50 things! The list is different every day, except for the first five, which are inevitable:

1. I’m grateful that I can see the sun.
2. I’m grateful that I can see the sky.
3. I’m grateful that I can see the lake.
4. I’m grateful that I can use my right hand.
5. I’m grateful that I have the internet

I began doing this gratitude list a few years ago and the benefit I’ve felt has meant that I’ve never stopped.

I regard all things in life as a gift and feel so grateful for everything I have. As odd as it sounds, I like to think of it in relation to having a cold. If I suddenly got a cold and lost the ability to breathe through my nose then I’d be so grateful once the cold was gone and my breath fully restored. It would be a blessing not to have the cold in the first place, but the only difference is that I was probably taking the easy breath for granted before having the cold. If I look at things from the bottom up - taking nothing for granted - it makes it easier to regard everything as a gift.

I learnt the incredible effect that my thoughts have on my world when I started to use positive affirmations. The changes I felt as a result of doing this, I can hardly believe. I wrote down all the lies about myself that I’d let myself believe, things such as “I have no worth here” or “there’s no space for me there”. Then I wrote down a truth to counter each lie, such as “I do belong there” or “there is space for me here”.

Then, every day I started speaking aloud those truths. At first, it was a struggle to connect with them as I didn’t believe them. They felt ridiculous and I thought they had no value. Besides, reading them aloud made me feel like a fool!

But what I gradually came to understand is that what I speak out of my mouth, my ears hear, and my words feed my soul. As I spoke out these truths about myself, my internal belief system slowly began to change. My confidence in these truths steadily grew and after about four months of this daily commitment, I knew they were real; they had become part of my soul. It’s like a loop system. That’s why it’s so important that I don’t just read and think positive things; I actually have to speak them too. That is where the real magic happens.

I view this process to be like trying to extract a deep-rooted weed. If I try to pull it out quickly with lots of effort, I might succeed, but the roots would remain and eventually a part of it might grow back. But if I work on the roots slowly, I’m guaranteed to get it all, and so by identifying the lies I had been believing and opposing each one with a specific truth, the lies began to disappear, right down to their root. This replacement also meant that the truths were blessed with all the strength and stability that the lies once had.

Sometimes, in moments of vulnerability or when I am feeling inadequate, the lies occasionally pop up. So I have to be super intentional about my thoughts and the words I use to encourage myself. The people around me also support me with this. They are honest and hold me accountable by reminding me of my truths, which can help build me up and maintain a good level of emotional wellbeing.

I love the analogy that my subconscious is like a cassette tape that I can record over, just like the old-school ones us ’90s kids used to have growing up. My underlying belief system about myself is now more positive and I am in a much better headspace, even though my physical condition has deteriorated.

Living with Ehlers Danlos syndrome, I make sure “the story I tell myself” is a positive one. I frame my situation positively through my use of words when describing myself in everyday conversation and even in my thoughts. I know doing this has good effects on my self-image. Even if a situation is negative, I am careful to use a constructive frame of reference which results in my self-conscious hearing words in support of me and my journey. At the moment I’m losing my organ function, but that’s not the end of me. I address the situation by asking “Okay, now where do I go? Which doors do I open?” The situations I face don’t have to be the be all and end all of me.

The truth is, there are those days where the stressors I face do all get too much, where I just want to put DVDs on for the rest of the day, or to throw the blankets over my head. And that’s okay. The key for me, I have learned, is not to stay there. I must feel the feelings, let them all out and then, as soon as I can, move forward. It’s one step at a time but soon enough, when I look back, those steps turn into miles.

Another tool I find really helpful for managing my mental state is looking outside my own world to see the worlds of others. Doing this gets me out of my own head and brings about emotions like compassion and love. I am reminded that, while I may be struggling with something, often others are struggling too. Having others share their lives with me - the ups and the downs - helps me to relate to them and gets me out of my own head.

This is sometimes hindered when people choose not to tell me about their struggles, given the ones they see me going through caused by my medical conditions. But if people can get past that and open up with me, then it really helps to connect with them and makes us both feel good.

Open, sharing relationships are an important aspect of my wellness. I love to ask questions and really get to know what things are affecting the people around me. A particular type of connection that I know can bring me joy when I need it most, is connecting with my little people - my friends’ kids. There’s something so therapeutic and warming about spending time and really connecting with children.

Connecting with others is what I love. I’ve found that no matter wherever or whatever situation I’m in, I try to look up, look out and ask myself “What’s in my hands? What can I do? How can I help someone else?” I can’t do a whole lot to change my own situation but I can do something to help someone else. The easiest thing in any situation is to say hello and smile at someone. I’ve noticed it can change someone’s day. It shows them that I see them, that I value them and that I care!

My whole life is about connection and alongside that, I love to empower people. I use my situation as an opportunity and leverage from my experiences to find ways to live my best life. I like to also show others in similar situations how to do so too. From this theme, I started Spirit Sparkplugs to empower, encourage and equip others to live their best lives, no matter what circumstances they face. We make practical yet fun medical products to break down the stigma around medical conditions and make it not only easier but a lot more fun too! In my experience, it’s the smallest things that really can make the biggest differences. This plays a big role in my wellness as helping others fuels my soul and brings me light and life. I love it.

Another thing that’s important to me and my wellbeing is helping create a world with equal opportunities for all. I’ve created a space at Festival One (music festival) called Soul Lounge which is all about making the festival accessible to everyone, with or without disability. Creating these opportunities and bringing people together to connect and encourage each other gives me so much joy. Seeing my dreams like this come to reality makes me smile from the inside out.

Giving constantly is great but I do have to be cautious as I can’t give out of an empty bucket. It’s not sustainable to give, give, give; otherwise I will have nothing left for myself. I’ve been told throughout my life that “I have to plug my own holes and fill my own bucket first before filling anyone else's”. I believe that’s where my saying “speak it out my mouth, so my ears can hear, which feeds my soul” comes into play - to plug my holes. I have to be my biggest cheerleader and support and give to myself no matter what.

I’ve also come across the power of contentment through learning to be okay within myself, whatever may be going on in my life. It’s a healthy mindset that I can take with me wherever I am. If I’m in hospital, at home, or even travelling, it is all okay. Being okay wherever I am and loving whoever surrounds me at any given time is satisfying and easy.

Music is a wonderful tool to express feelings and to relieve stress. I also use it a lot to bring my awareness to my faith. I love to put on music and let the lyrics be my words, my breath and my prayers. Doing this reminds me that God will make something beautiful out of my life. I have a public Spotify playlist that I go to, called An Anthem of Hope. I always find that renews and refuels my soul and gives me breath.

My faith is a huge aspect of my wellness! I’m a Christian, and having faith in God and his plan for me helps me to understand that my life is meant for something. The support network I have through my church is one I often rely on to connect and share feelings with like-minded people. There are a few poems and songs that I love, and there’s one particular favourite, The Weaver. I often turn to it for strength and faith.

The Weaver
- B. M. Franklin

My life is but a weaving
Between my Lord and me,
I cannot choose the colours
He worketh steadily.

Oft times He weaveth sorrow
And I in foolish pride
Forget He sees the upper
And I, the underside.

Not till the loom is silent
And the shuttles cease to fly
Shall God unroll the canvas
And explain the reason why.

The dark threads are as needful
In the Weaver's skilful hand
As the threads of gold and silver
In the pattern He has planned.

If it was possible to send a note back to yourself when you needed the most help, what would you write?

Kylee suffered different forms of depression at varying times between the ages of 12 and 19. Her long-standing health challenges were exacerbated by school bullying, sexual abuse, and her father’s head injury caused by a brain tumour.

How you felt as a result?
Like I didn’t deserve anything good
It’s my fault
Massive shame
I thought that I had to handle it myself.

Did you take prescribed medication?

Were there any triggers that exacerbated your feelings?
Bullying and abuse
Not being believed
Lies that I believed from others that I began to believe in myself.

Was there a turning point when things started to get better?
Learning how to speak the truth to overrule the eternal lies. Connecting with people who saw value in me and spoke the truth.

Journaling and gratitude lists - online. When I began opening up and stopped trying to do it on my own. Allowing good people and mentors to surround me with the truth. Since I’m a visual person I gained benefit from seeing life through analogues.


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