Learning to live with an autoimmune disorder – A mosaic of my journal 

Cathy Beesey Founder Stories Connecting Us 

Part 1: Wegener Anca Vasculitis, A Rare Autoimmune Disorder  

Chapter 3: The Colours Are Vivid 

The link to my memoir Contents and published chapters is at the end of this post.

The colours on the day I come home from hospital will never be as vivid, only as a memory. I see the deep blue of the fence and the green of the plants in all their vividness, as it was on that day. 

Backyard, Brunswick, February 2019

The roller door to our backyard slowly lifts. Soft rain and cool air touch my face as I tentatively climb from my Ford Capri, Stan helping. My car has seen better days: no heater, no air conditioner and no back window in the soft top. I do not care, I am home, my home of over thirty years. The colours vivid, it is as I left it and not: richer, stronger, more intense. 

My eyes drawn to the large canvas photo of Ciro Marina, Calabria Italy where I stood with a view of the Ionian Sea, a small fishing boat in the distance. Soft sandstone walls with a round light on each side of the entrance leading to the sand and sea. Remembering: standing on the terracotta path, being drawn to walk on the sand in the light of the early morning sun with coolness in the air. In her book Phosphoresce: On Awe, Wonder and Things That Sustain Us, Julia Baird writes … we hanker for the sight of green and blue, for the Earth of our ancestors, the sea of our origins, and the feeling on our faces of the sunlight that first nurtured life. 

*

Moving inside, leaving my outside world I cry, Stan’s arms surround me. The deep blue, purple of the walls and white ceiling, mirrors reflecting our artwork and photographs, comforting. I cannot imagine I would never have seen my home again, Stan here alone. 

Sitting on our black leather couch all my devices are on silent. I am calm, not wanting to be distracted by the beeps, needing to stay in the here and now. The steroids, 50 milligrams of Prednisolone daily, edginess within, as I move slowly and carefully from room to room surrounded by the pink tones in our lounge and dining rooms and the deep purple of our bedroom; staking my claim on this my home, making sure it knows I am here and here to stay. 

Gently and meticulously I lay the mauve linen tablecloth, with subtle woven squares, on our table in the indoor living area, with matching napkins. Tablecloth and napkins bought in Parma Italy. Remembering: standing in the coolness of the centuries old shop after eating lemon and raspberry gelato in the piazza. 

Sitting, unable to move as I use to move, as I love to move, I feel a shift. I have been creating a home for others to enjoy; I wasn’t taking advantage of the unique spaces Stan, and I have created within in our home. I was lying on the sage green sofa in the lounge room wondering what was wrong, not knowing it was a serious physical condition, thinking it was psychological or being lazy. It’s not the steroids changing me, they are returning me to myself, as they control the Wegener Anca Vasculitis. 

In the warmth of the afternoon Stan and I sit outside on the deck at our ten-seater table, he at one end, I’m at the other. Loving the fake turf, it makes the green of the plants greener and the blue of the house and fence bluer. Stan smiling, ‘It’s good to have so much to look at.’ Memories of our travels surround us with artefacts and photos, my side of the double carport. Stan’s filled with his passion for early Ford Falcons (1960-66). 

Our large fabric photo displayed in the carport of the beach in Vietnam, with fishing boats sitting on the sand waiting for the tide to come and take them for their night of fishing in the Gulf. Memories of my brother Henry, cousin Linda, Stan and I walking on the beach, taking photos as the sun sets in the warmth and calm. Each walking alone with our own thoughts and feelings, we are together and alone celebrating Henry’s birthday. I take a photo of this photo sending it to Linda and Henry with the message happy times in Vietnam.  

*

I am loving mornings and this morning I smile as I write. Waking around 5.00am most mornings if not earlier, darkness outside, turning lamps on as I move through our home. My first glass of chilled water and in no particular order, doing what I feel like when I feel like it: taking my temperature, lighting my candle from Zoe (my friends Marg and Andrew’s daughter, I am her other mother), making a cup of tea, setting out breakfast, writing, reading, watching Ted Talks, emptying the dishwasher, organising ice for the day and watching ABC Morning News. My star sign Virgo, an excuse for wanting routine: soothing, calming, starting the day centred. 

Fearful, the calm leaving. ABC Morning News showing the time, now not hearing what is happening in the world. Sitting alone at our dining table it is time. Breakfast of cereal, homemade fruit cake from Marg, made with love, leaving the last two mouthfuls to take with steroids and chemotherapy tablets, disguising the taste. It is exactly 8.00am as I swallow the first tablet, six more to follow. Maybe, one day I may come to love taking these drugs. 

Again, I wonder when and what will overwhelm causing frustration and anger. This is as I look at our beautiful display of 1960’s coffee pot sets and perfume bottles in one of our many glass and timber cabinets. In the past something small, insignificant has overwhelmed. Maybe it will be the ice as I take it from the tray ready to use throughout the day to quench my raging thirst, a side-effect of the chemotherapy. I’m surprised and delighted the little things aren’t as overwhelming as I thought they could be, a contradiction. Somewhere inside, feeling grateful, these small things have become unimportant.

*

Thursday 14 February, Daily Caption: Valentine’s Day. I want this day to be special for Stan and me. We don’t give gifts, we go out for dinner, the two of us to a favourite restaurant. This is how we celebrate. Not sure how to celebrate this day as I grapple with thoughts looping and swirling. In hospital, temperature raging, before diagnosis, I have one of my high temperature delirious great or crazy ideas. So many of these ideas I have forgotten, thank goodness, this one becomes something special. From hospital I contact my friend Danni asking her to buy Ottolenghi SIMPLE cookbook. And of course she does, although I think she wonders, ‘What is she doing?’ I write simply in this book:

To my darling Stan 

I will love you 💜 forever

Cathy  

Stan’s gift, pink roses. Valentine’s Day dinner of Mexican food, yum. Stan reaching across the table takes my hand. Later while watching television, ‘I am tired. I’m ready for bed.’ Stan says he will be in later although follows straight away.  

*

Daily Caption: The day looms ahead, in a good way, Wednesday 20 February. Over the last few months I’ve watched the pond in Jones Park being recreated. I want to do something, anything, ‘Let’s visit the new pond.’ I’m not sure I can walk there and back, wanting Stan and I to go in the midnight blue Ford Falcon XP, just that short distance. Stan is shocked when last October I was going to the gym four times a week. 

It is lovely to be out and about, arriving as a flock of duck’s land on the water. Stan takes photos: the wooden pedestrian bridge across the pond with ducks gently swimming and the gold spirals of the Russian Orthodox Church. Creating new memories together in the fresh air I missed so much when in hospital. Walking the paths, going up and down steps I touch a handrail. And I know, I have listened to others explain what can be found on handrails. And I know because Jade our granddaughter lives with Cystic Fibrosis. I am paranoid. I make sure my hand doesn’t touch my skin. I will sanitise when I get home. I never sanitised, only when Jade was younger. Now, thanks my lovely Renee, Stan’s daughter, I will come to rely on sanitiser. The small one in my handbag with my mask. I thanked Renee for the care pack. She laughed and said, ‘You mean the pack with all the things you need to live in this dirty, shitty world.’ Who would have thought I would need a care pack? Not me. 

A McDonalds bag sitting on the ground, spoiling what is calm and tranquil. Why? Stan hates this and being Stan, he hesitates, leaves it and, ‘I have to get this.’ Paranoid, with panic in my voice, ‘You can’t! I want to hold your hand to walk up the steps. I don’t want to touch the handrail. I need your help.’ The bag is an unknown, who has touched it? I can’t put myself at risk. Renee has shared that in time I will learn what is right and what isn’t, there is advice but ultimately, I will know as she has done for her daughter Jade. I give gratitude to Renee for sharing her stories and often only with me, giving the advice I want at the right time and being the daughter I didn’t have.

As I walk, I am overcome, what if I wasn’t diagnosed? How long would I have lived? Will this fear overtake in two, three months? It is clear what could have been, I could have died. I am devastated wondering how Stan would have coped. This is unconditional love, the joy and pain. Pain I cannot truly imagine, Stan physically turned in on himself. 

Another outing, this time to shop. I want some type of lounge; to spend time outside and I must have those purple clear folders to organise the paperwork ever increasing and strewn on our desk. The labels are written, HOSPITAL, SPECIALISTS, GP, TREATMENT, TESTS, PSYCHOLOGIST and OTHER. Pleased to be out of our house although I find myself weaving my way around not wanting to be near anyone, fearful with my compromised immune system. My legs begin to shake, my body and face flushed, exhaustion anxiety overwhelms. Relief now home sitting on my black leather wellness couch. 

*

The doorbell rings, more flowers. I try to read the card, blurred vision: a symptom of this condition and tears. Stan reads the messages. I cry for being alive, to know how much people care and how important I am to them. Our home fills with flowers. I tend to them with love, carefully removing the dead ones, changing the water, keeping them alive for as long as I can, as I am for myself. As flowers die more arrive. Taking photos, creating images and memories, I thank each person. Humble as each new bunch of flowers arrive, sent with love. I could say, ‘Who’d have thought?’  

Before my second visit to hospital, Lee, Stan’s son, Jacqui, our daughter in-law and our three-year-old granddaughter Jasmine sent flowers. Beautiful flowers of white and mauve wrapped in shades of green paper. I am only home a few days before returning to hospital. I took a photo of the flowers and placed the paper in a cupboard unable to throw it out. As flowers arrive I take the paper and display each piece in a cone shape placing them in one of the boxes that was filled with flowers. The paper stands tall reminding me of flowers in a vase. Sharing this with Jacqui, she tells the story of the flowers they sent. Jasmine chose mauve flowers, it is the favourite colour we share. The flowers are ordered and as Jacqui and Jasmine leave the florist Jasmine is distressed, ‘Why aren’t we taking the flowers to Nana?’ Jacqui explains. Walking home Jasmine asks, ‘When are we going to the forest to get more flowers forNana?’ 

Alone viewing the photos taken as I travel on this new journey: soft white clouds, trees and a red brick building, my first time in John Fawkner hospital. Flowers of mauve and white from Lee, Jacqui, and Jasmine. In hospital I take photos of the flowers I am given; my hospital room on diagnosis day; tissues of tears shaped as a heart; the drugs I take each morning; two champagne glasses one with soda water, one with orange mineral water for Marg and me to share; and now photos of our home. Beginning a new folder I label it WAV (Wegener Anca Vasculitis) showing my journey, a very different one. 

Staring at my toenails, they tell my story. Always painted, done once a fortnight. It must be three, four weeks or more. I have lost all sense of time. My nails have grown as quickly as always, the polish has moved, and I have cut them with more polish lifting. This isn’t one of those things I want to do, to fix. It is warm and I like to walk with bare feet on the floorboards throughout our home and outside deck. Visitors are coming, friends Danni, Marg, and Cheryl, each at different times. They will see my toenails, no longer perfect.   

*

Daily Caption: Death sits with me, Wednesday 27 February. I am alone for the first time while Stan is doing what he loves, one of his many passions, shopping for food. I am overwhelmed with what it would be like to die right now. To rest my head on the table and die. It feels as though it would be a long deep sleep. I would be gone, and I wouldn’t see and know the grief I created. What would this do to Stan? How would he feel, cope to find me this way? To bring me home and to have lost me. Coping: I write in my journal and flick through our travel photos transporting myself to other destinations, travel my passion. 

Stan shops and shops, panic begins to rise. Is he ok? Has something catastrophic happened to him? I hear the Ford Falcon XP with its Windsor V8 engine rumble down the lane. The roller door lifting, seeing the midnight blue of his car and chrome sparkling in the sunlight. Stan brings the shopping in and sits. The first time he has sat, looking more relaxed. He is talking but not as incessantly saying, ‘You know me,’ as he often does. ‘I do,’ Stan the man, my man. 

Gratitude: To Stan for his unconditional love, taking such care of me and himself and today stopping to sit and be calm. In my heart I know he would do anything I could want or need.

Gentle tears falling, words swirling – how did this happen to me? Never why? The colours richer, a white butterfly flutters near white flowers, and I notice the clouds are cumulus. Warmth on my face, clouds moving slowly, white with shades of grey against the blue of the sky. Moved by the Ted Talk: Cloudy with a chance of joy, taking me within and beyond myself. Thank you Gavin Preter-Pinney for giving a reason to stop, be in the here and now and smile. Clouds now travelling on this new and most extraordinary journey. 

Cloud Watching, Brunswick 2019

Copyright Cathy Beesey, March 2025. All rights reserved; this intellectual property belongs solely to Cathy Beesey.

This is the link to my memoir Contents and published chapters.

Grateful – Contents