*Thank you to Noēll Ratapu for allowing us to share this piece. You can see more of her content here and her website here.*
Trigger warning: this piece discusses themes of grief and depression.
My name is Noēll Ratapu. I’m a 25-year-old, disabled, neurodivergent, queer artist and advocate from the East Coast, Tūranganui-a-Kiwa Gisborne. I was diagnosed at 18 months old with a degenerative disease called spinal muscular atrophy (SMA), a muscle-wasting condition. Because of this, I began using a wheelchair full-time at age 11, after I lost the ability to walk.
Being born with a degenerative disability takes a huge toll on your soul. With my particular disease, I was constantly losing strength which put me in a state of endless grief; similar to the feeling of losing a loved one, but for every single week of your life. The forced adaptation to what has been lost, how to now navigate this new way of living after something special has been taken away from me, and figuring out new ways to prolong my independence as much as possible, was my normal but I never did get used to it. However, it has taught me resilience, the ability to adapt (even though it’s hard), and to allow myself to grieve the losses. I didn’t always see it this way.
As a child, I couldn’t explain what I was feeling or even begin to understand what was going on with me mentally as well as physically. It was like a deep ache that sat in the pit of my stomach - as if I was being punched continuously. The pain was radiating to every part of me. The constant confusion about why my body wasn’t operating like it did the week before, had me in a serious chokehold of emotions at such a young age.
Even though I understood that I had a disability, my brain still couldn’t process why I was losing parts of my independence so rapidly. The feeling of being left behind when all you want to do is keep up, and when you finally get there, everyone else has already left. I lived in a state of recurring daydreams while watching kids run, play, and participate in sports days. I envisioned myself running faster than all the boys, breaking the record for the highest long jump, and doing cartwheels to top it off. I was so fixated on those thoughts that it made Little Me grieve even harder for what could have been. You can imagine the years to come when this festering grief, exclusion, sadness, anger, confusion, and loneliness become even more prominent.
However, I was given a glimmer of hope In 2016, when a treatment for my disability became available in the US. My family and I were hoping by the beginning of 2017 New Zealand would approve the treatment - especially since it was showing results that it was working - improving and in many cases, saving the lives of people with spinal muscular atrophy. I was in desperate need of this treatment, and I held onto this hope of getting it like my life depended on it (which it literally did).
During this period, I was sleeping at least 16-18 hours a day and simple tasks like brushing my teeth and showering became even harder because of the pure exhaustion and complete fatigue I would feel once I was done. But I held on as long as I could because there was a glimpse of light at the end of the tunnel.
By the end of 2017, there was no news about New Zealand approving Spinraza any time soon. I was starting to lose hope and fell into a deep depression. I guess I just gave up by that point. Knowing there was a treatment out there that was working and improving thousands of SMA patients' lives that New Zealand wanted nothing to do with sent me into a downward spiral of believing my life wasn’t valuable enough to be helped. My whānau were watching me die in front of their eyes - not just physically but mentally too.
So, in December of 2018, my parents decided that we should take a Spinraza research trip to the US to see if we could move there for me to start treatment. Once returning home, that little fire of hope started to reignite! My parents decided to take a huge leap of faith and sell absolutely everything we had within a few short months, including our house, all our furniture, and their business, and move to California. We arrived here in late March of 2019 with only one suitcase each and our dog, Nala. Everything we had left was in our suitcases. A new adventure awaited us.
I was so surprised at how fast everything happened. Only a month after our move, I had surgery to place a suboccipital port at the back of my neck to receive intrathecal injections of my treatment. My first injection of Spinraza was two months later. By the end of 2019, I was already starting to improve physically! It was like the deterioration halted and tiny losses, like the ability to brush my hair, started to come back. I felt my quality of life return and with that came a clearer mind and a huge sense of hope. I started new hobbies and found passion again in old hobbies that I lost due to weakness such as cooking and art! Hope gave me my power back and it allowed me to embrace and learn to love every part of myself including my disability, queerness, and being neurodivergent. For the first time in my life, I am at peace with who I am entirely.
Amid doubt and darkness, hope and resilience persevered.
-Noēll Ratapu
Voices of Hope wants you to know that you do not have to do this alone. Click here to 'find help' - it's not weak to speak!