INTERTWINED: CREATING & CHRONIC ILLNESS

Fair warning: I'm about to share personal things here...I'll talk a bit about illness, about mortality and treatments. If vulnerability or discussion of sickness makes you uncomfortable, then this post may not be for you ;) I want you to know straight up - I'm not sharing this for sympathy or pity...I don't need or want those things. I'm sharing this for CONTEXT so that you might be able to understand just why this season of creativity is so important to me.

When the world stopped as we'd previously known it, back in 2020, I had already been sick the year before with Ross River Virus. It had been so debilitating that I'd been unable to walk sometimes after being hospitalised and treated first for viral meningitis. My legendary Dr had hoped it would pass (as I'd hoped too) but the symptoms only seemed to be able to be managed somewhat by anti inflammatory meds and pain killers (both of which began to give me other complications).

There were so many tests and treatments. I'd been diagnosed with a rare auto immune disease years before and had complications post-treatment for that, so I was no stranger to hospitals or treatments. But this new barrage of testing had an increased urgency about it. I seemed to be getting worse as the days, weeks and months ticked by. And every test came back with a new thing to add to the list of auto immune diseases - or it showed nothing. It was a puzzle - a not a fun one - one that had everyone stumped. From the time I developed the symptoms of viral meningitis (that was later discovered to be Ross River Virus) onwards, some of the tests I had included:

• CT scan with dye for my brain

• Chest Xray

• Lumbar puncture

• Blood samples taken from both sides of the body

• Countless urine samples (including multiple 24 hour samples to check kidney function)

• Nerve Conduction tests

• 30 days of heart monitoring

• Consults with Professor of Rheumatology, neurologist, cardiologist, referred to chronic pain specialist, case discussed with nephrologist

The tests and appointments and medications were one thing. But the symptoms and my declining health, were another. Here is something I journaled in September of 2020:

On any given day. I can now go from being able to walk, to using a cane just to get from my bed to the toilet. I can drive sometimes for ten minutes and be ok or I can walk around Aldi for a few minutes and then have to be in bed sleeping from the exhaustion for the next two hours. My inability to concentrate, my sensitivity to noises and even light at times is extreme and unbelievable to me. This weekend I barely left my bed because of the pain and fatigue. My capacity no longer meets my capability level. I sometimes need to use a mobility aid - and other times I'm fine. I'm unable to return to music indefinitely right now, but hope to some day. I'm doing my best to process these changes in my/our life. I'm grateful for Brett, our kids and an amazing support network of family and friends surrounding us. I'm so grateful to know the presence and hope of God even in the midst of pain, trials and disappointment.

I had to learn to stop and rest.

To be still.

To pace myself.

To practice gratitude.

To confront reality.

To hold both the pain in the present with the hope of the unknown of the future.

These were all really hard things that I had to learn to walk out and to process. And while I did that, my mind continued to create. In the quiet, restless hours, in between bouts of delirium and wakefulness, when I closed my eyes - I started to see a play on a stage.

It kept coming to me.

So one night, I took to my iphone notes and wrote down what I was seeing. Here are those notes:

Oh boy, reading that over I am equal parts embarrassed by some of it and in awe that some of it still remains in our current play format for Intertwined. I am glad that I made notes to look back on. After the actual official diagnosis of Systemic Lupus Erythematosus (SLE), there were lots of other medication trials - from organ protection drugs to protect my kidneys, hospital stays - to try and get control over the bowel involvement, and of course immuno-suppressants to try and help my body stop attacking itself. And as we got a win in the meds department, my symptoms lessened, my body became my stable and more days more predictable. This took a long time, but as it came, I kept working on the stages of Intertwined: research, reading, writing, listening, making script notes and eventually writing the script and score. Intertwined became medicine and therapy in my days.

It grew with me from days in bed to days getting stronger. I went from needing to be pushed in a wheelchair to feeling strong enough to walk around the block. And all the while, I kept the lessons I'd learned of pacing and resting, of practicing gratitude - I kept them all with me tucked away into the folds of my new-found freedom in wellness. A second chance. And so in faith, I stepped out to bring Intertwined to the stage.

What began as a dream, has now turned into a reality.

And on the eve of bump-in, I share this post to say thank you.

Thank you to God for getting me through. Thank you to my beautiful Brett and our kids who have helped me through unbelievably difficult seasons and supported me in my dreaming. Thank you to my incredible family and friends network. And to my community. And to my cast, band and crew. Thank you: to every person who has supported me, cheered me on and helped me through - to all who donated for our Kickstarter and said, "we believe in you!"; to those in our community who have offered to help in so many ways; to those who have cooked us meals while I've been unwell; to friends and family who sat on my bed and told me I'd get through; to those who cried with with, reassured me of the goodness and faithfulness of God; to those who held me during what felt like incredibly painful days that would never end; to those who took turns pushing the wheelchair, taking me to appointments, standing in the gaps when I couldn't do anymore; to those who supported Intertwined from the get-go and to those who have purchased a ticket to come and see this....to all of you....THANK YOU from the bottom of my heart. I hope Intertwined is as meaningful an experience for you as it has been for me working on it. With peace, kindness and gratitude, Lusi x