How knitting replaced my friends…

With chronic illness and disability, loved ones often exit your life, as soon as they realise you are not going to get better. They are there for you when they think you’ll recover, but disappear the minute you don’t. There is a saying I like…

***chronic illness will show you two things very clearly – the amazing compassion of some people you hardly know at all, and the disgusting selfishness of some people you thought you knew very well. ***

It can get pretty isolated waiting at home waiting on services and equipment, that never seems to arrive, especially when a pandemic gets added to the equation. It gets a little monotonous talking to yourself after a while, so rather than going insane with boredom, depressed your friends have bailed, I decided to get creative. I turned to my huge stash of yarn. What once overwhelmed and embarrassed me, because my new best friend. I have lost contact with nearly all of my friends I had before I got unwell BUT have reconnected with this stash of goodness..and it’s not letting me down! It’s there for me every time I need some comfort.

I have spent most of my adult years knitting, latch hooking rugs, needlepoint cushion covers, even designing my own knitwear and fully outfitted dolls. The yarn has been there for me, no matter how I am feeling. It has been there for me in my darkest times. My greatest achievement was definitely, knitting for the WOW wearable art awards where I had a lot of success with my costumes.

Art makes me feel better. Since becoming isolated in my home, I have been able to reflect on just how much of my life was spent looking after other people’s wants, needs and problems and putting my own on hold. I told myself they were much more important than me. In reality, by focusing on other people, I guess I was saying I was not worthy of the same type of care. This is why I am excited to have made the connection.

I have no excuse to ignore my needs anymore. I can’t care for others like I used to. My health has told me it is time to spend time on someone else.…that person is ME. I see this as a wake-up call . I’m allowed to be selfish for a while. I’m going to design a space that is focused solely on what feeds my soul. A place where I can feel good about who I am every day.Where I can feel good about what I can still do, and surround myself with the things that I love. That for me is an art space, surrounded by lots of yarn.

I want to make my tiny house the hub, for all my creative endeavors, with a plan towards making money, doing what I love. In the past, I always blamed not starting my business, on a lack of space, a lack of money, a lack of time …but really if I’m honest, I ran from every opportunity that meant I might get successful. That voice in my head said ’ What if I fail? ‘ I have let this unfounded fear hold me back for most of my life. Even if I did… Everything happens for a reason and comes with a positive spin if you look deep enough. My deep dive brought me to this page and a new appreciation that my health is the catalyst for change, which is definitely my gift in disguise.

Why renting doesn’t always work if you are disabled…

I absolutely LOVED the work I did. I knew, firsthand, as a parent to Children on the spectrum, how hard it was to get respite care in my community, so it seemed natural to me to offer up my home and give other parents a break. From there came emergency fostering for children in crisis. I loved being a part of a personal transformation, watching them flourish with the simple gifts of love, laughter, one on one attention, and a shitload of patience. I had an abundance of those things. I prided myself on the work I did with these children. My patience was by far my greatest attribute and was why I earned a great reputation for my work with Autistic children. It never seemed like a job to me. How can it be called work to pour love into children?

One thing you don’t get told is that caregiving for government agencies, won’t be seen as a legitimate income. Both respite care and foster care are classed as ‘reimbursement of costs’, NOT a wage. I tried a few times to buy throughout my adult years, but each time, I found I hit this roadblock. If it wasn’t because of my own children with Autism, it was because of the fact I worked with them! This really puzzled me, why should something that was seen as a valuable job in the community, be a reason to lock me out?

I accepted long ago, that buying a house was not going to be an option. I talked myself out of the disappointment, by lying to myself. I told myself renting was the best way to live. I made peace with that and got on with life renting …..WELL … until I became disabled and realised that life as I knew it, was officially over. Renting was now my worst enemy.

Lying in my hospital bed, I realised this property wasn’t going to work for me anymore. I had a lot of tears. It had everything working against me.. stairs, an incline, laundry outside, a shower within a bath, doorways that were too narrow to turn a wheelchair, should I need one….it was screaming out 100% UNSUITABLE. While this truth hit home, all I could think about was how powerless I was to change a thing about this place. I was not eligible for any home modifications with the hospital as I was too young. I wasn’t able to get ACC, as I was told I didn’t have an accident…Winz told me to ask the landlord, see if he was agreeable to at least modify the bathroom. … that was a resounding ‘ Not going to happen!’. I can’t make alterations to the property myself, or I will be in breach of the rental agreement and lose my bond.

It is inaccessible for so many reasons. I have had to adapt to these problems. with the following:

-I can’t remove the bathtub in order to reach the shower, so need a carer to shower me.

-I can’t bring the laundry inside, so have to rely on others to do all my washing for me.

-I can’t add ramps to the front doorway steps, as it is on the main walkway for the public. Even if I could, it is too steep to be viable . The property is on an incline once you get to the bottom of the steps. I haven’t been able to use this entrance to my house since before I went to the hospital in January.

When my wheelchair finally arrives, I won’t be able to use it in most rooms in the house, due to the placement of doors and steps into certain rooms. So it’s a no-brainer. I need to move out. This is where the problem lies. Where do you go when rentals are impossibly hard to find? I have tried in vain to look for a wheelchair-friendly house….7 solid months of dead ends and disappointments. Every single place that was found, ends up being inaccessible… steps, a steep driveway, or the typical kiwi bath with shower arrangement.

Coming across the Tiny House video in the hospital, was like a message from the universe. I wasn’t even looking for it and up popped a random video.. It felt like an answer was being handed to me. That set my mind on a new course and the one that is fuelling every word in this blog. I feel like I have the answer to my problem, which is the tiny house. I just need to work backward ..using the magic of the ‘secret’ .I see myself in a Tiny house …..now I need to work out how I got it?!

my teeny Tiny house.

Click that like button!!!

I remember the day well. I was lying in my hospital bed feeling pretty darn sorry for myself. I had been left in my room for a few hours, unable to reach the bell to call my shift nurse. Not having a voice for 6 weeks, meant I couldn’t shout for help. I was feeling pretty darn helpless. The longer I waited for help, the more I felt forgotten and overlooked. My panic started to grow, imagining going home in this condition. All manner of thoughts flew around my brain. I started having internal conversations …” How the hell am I going to get into my house??.. OH MY GOD…my house has stairs!! I can’t walk and I have S-T-A-I-R-S …FML! …NO rails!!! Oh my god…Maybe I can use the backdoor…OH wait, that has STAIRS too. FARRRRKKKK .. How will I have a shower …sob… it’s inside a bath!!! AHHH… I can’t lift my legs!!! How will I reach the taps to turn on the water, it is at the top of the showerhead???!! ….sob… I’ll never shower again…How will I get my parcels?.. Clean my clothes?… …which progressed on to………. how will I sit in the sun again?… WILL I SIT IN THE SUN AGAIN? …Who will weed my garden?..MY poor veggies won’t live!!.. My POOR plants !! Forget the plants, how will I live??..sob…What will I cook?? CAN I cook???..oh my god, …gulp…I’M GOING TO STARVE TO DEATH!!! ?… LOL… I was a bit of a drama queen while processing this new existence! I grabbed my iPad, thinking some music videos would be a good distraction.

I stumbled across this life-changing video on YouTube.

It featured a man called Lance, who had tragically lost 2 people he loved, both within close succession. He processed his grief by building himself a fantastic tiny house. This really resonated with me. I was grieving the loss of my former self, the fit, healthy person, who only weeks prior, was carefree, hiking up mountains and roller-skating with friends. I was also grieving the loss of a multitude of future dreams. I guess you could say, I had resigned myself to being stuck in a wheelchair for the rest of my life. All my plans to travel, start a business, and find a partner, were instantly put to sleep the moment I was told this condition had no cure. Everything seemed helpless until I watched this video.

I couldn’t have clicked that like button fast enough on this video.I clicked, the minute I heard Lance explain that in order to live the life he wanted – he had to make the focus on what he wanted out of his life. He needed to give his mind a task, and his heart some healing. That was exactly what I needed to hear. Building a tiny house would be the project that would give me a valued life back. Lance had multiple income streams..including creating his own Hula Hoops from his 20 ft Shipping container home, nestled in nature…That was all it took for my brain to scream….” THIS IS THE ANSWER” !! It was like his words spoke directly to the part of me that had given up… It reminded me that I was more valuable than I gave myself credit for, I did have something to offer. My creativity was what gave me joy. It was what had won me prizes in the past. I didn’t need my legs, in order to work magic with my hands. I could build an art space to fit my disability. A light started to shine at the end of this dark tunnel… Suddenly I had found my purpose again.