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 4: Kindness Surrounds   

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

17 February I wrote in my journal: surprised, delighted how well I know my family and friends as I predict their response to my diagnosis of Wegener Anca Vasculitis. I am not frustrated by this as I listen and tell my version of this journey, so far. 

Ciro Marina, Italy 

Daily Caption: The calm after the storm, Tuesday 19 February. Sitting in our backyard photos of our travels surround. Memories of Ciro Marina, Italy with the calmness of the sea and warmth in the air. Safe in our home I want my close inner circle of family and friends to surround, I send the next update. 

I’m feeling better in myself being at home and wanted to let you know where things are at. Wegener Anca Vasculitis is a type of overactive immune system disorder effecting my ears, lungs and kidneys. I am now on heavy duty drug therapy – 3 months, 6 months, 2 years with constant monitoring. I can hear and feeling stronger to talk. 

Much love 💜💜💜

Messages arrive from friends and family, I smile, cry gentle tears. Staying in the here and now doing what I feel like when I feel like, I want to talk with my brother Henry living in Vietnam. It is only now I feel strong enough. I know I will cry. He is my brother and with any sibling there is dysfunction and love alongside a life of shared memories. Especially the recent ones in Vietnam for his birthday. I have a need to speak with Henry to explain what is going on, wanting him to know the seriousness. 

In our not wanting to alarm people Stan and I may have left some thinking I will be fine in a couple of weeks. Henry seems shocked at the depth of what has happened. He says, ‘You can build your immune system through diet.’ My immune system is overactive, why give advice on building it? Henry with his diet advice. I take control, ‘It’s much more complex, much more serious, this is life threatening. It’s time to tell you the next bit.’ I explain I am on daily chemotherapy tablets, steroids, an anti-nausea drug and antibiotics three times a week. Henry responds, ‘I am going away (giving me the date that I don’t take in) it would be good if you get in touch before I go?’ What? If he writes this, I will respond I am trying to save my life it might be good for you to contact me. Will he write this?  Why do I want to hurt him with such blunt words? I can’t stop these thoughts. I had imagined he would be more emotional, upset. He will deal with this as he deals with this, I cannot control his response. Stan asks, ‘How is Henry?’ ‘Henry is being Henry,’ is all I say.  

Henry sends a message. Do you want to talk? I am delighted. Up until now he has only responded to my messages. It seems so long since we spoke: days, a week or maybe longer, time has been drifting. I try and he is on another call, he tries, and I am outside in the warmth. Finally, we connect. He shows his concern in many ways, and I ask about his work, and he shares that one of his expat friends is grieving for his son who has died. What pain. We met him in Vietnam, and I can see him as Henry talks. Henry is there for him. 

Henry explains, ‘Steroids can make you manic.’ I respond, ‘Yes, the specialist told me emotional and manic. I don’t know what is doing what to my body. Whether it’s the Wegener Anca Vasculitis or the drugs.’ Sharing our visit to Jone’s Park Henry is shocked I couldn’t walk that far. Henry asks after Stan and wants to know if he is looking after himself. He is pleased he is having acupuncture and surprised he has gone shopping, ‘Tell Stan if he ever needs to talk, I am here for him.’ I know Henry likes Stan, but I have never been sure of the depth. ‘You are fortunate to have Stan,’ giving Henry a sense of comfort I imagine. We start to ramble not wanting to finish but having nothing more to say, I point this out, and sadly end our conversation. 

*

Linda, my cousin, my family: knowing I will get what I want, need from her. Sending messages to each other, keeping in touch. Time to see Linda, to talk with her. I smile knowing we are alike trying to make messenger video work: both of us not having the camera on, not pressing the right buttons we go round and round until I see Linda sitting in her home in Fremantle. Linda tucked in the corner of her sofa drawn into herself. I feel her pain and see my pain in her. She has researched Wegener Anca Vasculitis. Only a few tears as I tell my story, what is important and answering Linda’s questions. 

Talking with Linda triggering thoughts and feelings, ones that keep coming. What will the impact of the drugs be on my body? The steroids and chemotherapy are strong, my body competing with a treatment that is overwhelming. I have only felt like healthy food. A good thing but I ask myself, ‘Would it matter what I ate?’ Eating lots of fruit could improve my immune system. Can it compete with the drugs, the treatment?  

Linda is concerned the Infectious Disease Specialist said, ‘It is your body doing this to your body.’ Like me Linda has taken care of herself, ‘I am grateful to Dr Max Carter, he gave me an explanation.’ Sighing, ‘How could my body do this to me?’ Linda suggests, ‘I want to come to Melbourne to be with you.’ ‘You will be able to visit Rachel.’ ‘It is you I want to see.’ Why do I do that? Why do I push her away when I want to be close, for her to hold me, to talk, just like sisters? Why do I tell funny stories? To ease the pain. Why do I have to keep being so strong? Why can’t I be vulnerable with the people I love? 

I wake the following morning to a heartfelt message from Linda reassuring we will get through this together. Messaging often, speaking with each other, sharing photos, and having coffee at the same time using our rooster cups bought in Vietnam, Linda on one side of Australia, I am on the other. I send a message.   

Dearest Linda the sun is shining. I said to Stan it’s a perfect day, visits from friends, quiet times, writing and reading and a bit of fear but doing well 

Enjoy your day 💜💜💜

Gratitude to Linda: thank you for saying I’m holding your hand and right by your side and showing your love, connecting through sadness and fear.  

*

My biological family surrounds me, except my brother Bill. Does he know? I am still not strong enough to contact him. Anxiety, disconnected from Graig and Carrie, my sister’s children I wonder: don’t they get it, how serious this is. Craig visited briefly the first time I was in hospital. Now only responding to my messages. Not asking how are you? Don’t they want to know what is happening. I send a message reiterating my condition hoping they understand the seriousness. I wonder, have they contacted my brother Bill. This is the only thing I’ve asked of them. I wait.  

A hug, gentle tears, the front gate closes, ‘Bye Cath.’ Sitting on our veranda, staring at our front gate feeling grateful, confused and like I’ve been in a whirlwind. My nephew Craig arrived within an hour of my text. Relief, I can tell him my story, the one of Wegener Anca Vasculitis. It’s what I need him to hear. Craig and I in the warmth sitting on our back deck, Stan shopping. Craig cannot stay long, he is working. 

Craig is typically Craig saying things that are annoying and bossy and alongside this helping me understand. Showing him my Webster Pack of tablets organised by the pharmacy, wanting Craig to see my fear of these drugs, seven tablets a day: one of the many changes in my life. He responds with, ‘I take nine tablets a day keeping them jumbled in a plastic bag.’ The whirlwind increasing, everything is a blur, with Craig putting his hand over his heart saying he had a stroke. I am confused, I don’t understand or know what to ask. Why didn’t I know? Is this one of my blind spots? Why didn’t he tell me? This is for another time. Silent as Craig talks and talks until I respond to his criticisms of drug companies making money from illness, ‘I’m not interested Craig. It’s the specialists and drug companies keeping me alive.’ 

We talk about how hard it is for the ones who love you to watch you suffer, often worse than the one suffering. Craig says something like it’s alright for the person who is dead as they don’t know the suffering they cause. I also believe when I die, I am gone from this earth, and I will not know. BUT I am so grateful to be alive, I want to live, and I don’t want to leave Stan. The words I want to say to Criag won’t come. I ask Craig about his partner and children. Liking this about myself, asking about others and tired of talking about this autoimmune disorder and the impact on my body, my life. ‘Have you contacted Bill?’ ‘Carrie started this, and she can finish it.’  We cry briefly as Craig leaves. I am exhausted.

*

A message from my niece Carrie acknowledging my condition, the treatment I am on, sharing her news and asking questions about our extended family. She can visit next week and if I need anything to give her a call. I am wanting to see her. 

Stan is at the acupuncturist; Carrie lets me know she will be late. Her daughter and family arrived at her home to shower and do washing. They are dealing with bushfires in the semi-rural area where they live. Couldn’t she have left anyway. Stan arrives home showing annoyance she isn’t here. Carrie arrives with a gift. She has taken one of my sister’s vases and filled it with soil, blue stones, and plants with a blue ladybug on top. She has my sister’s vases. Carrie never uses them but cannot give them to strangers. She will decorate one for her brother and oner for her daughter. 

I tell Carrie my story. She tells me one of her brother’s friends at fifty-two, a long-time friend died of a heart attack Monday night. He was fit, he was cycling, he didn’t come home. Life is fragile. Carrie and I have fruit salad with yoghurt and granola, the one I have each day at around four o’clock. She stays for dinner. Carrie is curious about our extended family. My cousin Michelle who I haven’t seen for around twenty years, two years younger recently died of cancer; Kath her mother has lost two of her children to cancer. How does she live with this? 

Carrie tells me she left a message for my brother Bill. I explain he doesn’t get them. ‘I might try next week’, she explains. Alone I take a photo of the vase placed in the middle of the table on our fake turf, it reflects in the large mirror with the blue of the fence and the green of the plants in the background. I send it to Carrie. 

*

The phone rings and for the first time since being home I answer. It is Ray, Stan’s father doing his checking in, warming my heart. At nearly ninety-three Ray is remarkable showing kindness and sharing his wisdom. He is happy and relieved I’m home, ‘I picture you in your backyard sitting on the deck in this perfect weather. Such a lovely space for you.’ I assure Ray I am good and how wonderful it is being home with Stan and our granddaughter Tahlia, studying in Melbourne.

Our conversation is easy. Ray wishes I had met his father, his most important role model. Talking with Ray I realise Stan isn’t quite telling the whole story, gently I explain, ‘It is three months intensive treatment.’ I don’t want to overwhelm Ray, but I want him to know. I need people to understand this is serious and long term, I won’t be my smiling Cathy getting better quickly, this time. During one of our many conversations Ray tells me I am special, and I hear him, ‘My son Stan is special too.’ ‘I know.’ 

*

Greg, Stan’s brother will visit later, Stan was unsure of inviting him so soon. I feel Greg wants to see us and I want him to know I’m okay. Stan making pesto pasta for lunch, Greg arrives, glad he hadn’t eaten. Greg has been to Monash Hospital for a check-up. He is focussed on my health and on his, making connections. Lots of questions of each other as we talk and talk. I am peaceful and content. Telling Greg I’m writing every day, keeping a journal and how it helps deal with this catastrophic change in my life. He smiles, ‘This may be your novel.’ 

February 23 is Greg’s birthday. I send him a message. I have always handed over communication to Stan when it comes to his family. Thinking it isn’t appropriate to do, overstepping my place. Now is time to continue and deepen my relationship with the Gibson family.  

Happy birthday Greg, lovely to see you yesterday and thank you for your thoughts, compassion and kindness 

Enjoy your day 💜💜💜

Gratitude to Greg: For his many messages, contacting Stan most days, showing compassion and concern for us both. I didn’t realise the depth of his care and how much a part of his life I have become as he has mine.

*

FaceTime, for now, is the only way we see Jasmine our granddaughter, hear her voice and let her know how much we are missing her. Our first FaceTime with Jasmine, Lee, Stan’s son and Jacqui; Jazzy staring, quietly watching, taking it all in. We have spent so much time with our granddaughter during her first three years as part of the Gibson family, special times, joyful memories. I wonder what she is thinking. Slowly she warms and our eyes connect, my wish is to hold her tight. 

Another FaceTime with Lee and Jasmine. He contacts us early before Jazzy gets too tired. She is more animated and engaged. Her big brown eyes that looked scared and confused now looking lively. She plays and engages with us, Jasmine sharing her love of cherries, eating them as we talk and play. Stan buys cherries and I share a photo with Jazzy, connecting in the only way we can, for now. 

And another FaceTime with Jacqui and Jasmine. They cannot visit, Jazzy has a cold. Jazzy’s nose is full of snot, and she coughs that rattly cough. I flinch at being in contact with a cold and what it could do. Stopping myself, knowing I am safe, enjoying being with them both and learning about Jazzy’s recorder lessons. 

*

Marg my friend of over forty years arrives with a hug and, ‘So many flowers it looks like a morgue. I mean florist.’ I don’t hear the word morgue, I only hear florist. She says, ‘I’m so sorry.’  I’m not sure why she is sorry, I don’t ask, it doesn’t seem important. Fruit cake freshly from Marg’s oven is placed in our kitchen, we never bake for each other, we don’t have that kind of friendship. Marg remembered my story of loving fruit cake over Christmas, the one Stan’s brother Greg made. Marg didn’t want to bring flowers, finding something unique. The fruit cake is made using mango rather than sugar, Marg wondering if I have diet restrictions.  

Lots of questions about Wegener Anca Vasculitis and what it means for my life. I answer easily filling Marg’s need to know. During our time together Marg holds me tight. I know Marg well, friends for over forty years and still she surprises with her insights. I see the depth of her compassion and I love her for it. When I say I could have died she holds me tighter. We are connected: crying, talking, laughing, continuous and endless. Moving inside Marg quietly says, ‘I didn’t mean to say morgue.’ I am surprised, confused, we laugh. Marg waits to see Stan and as she leaves, I smile, a heartfelt time together. 

Gratitude: To my dear friend, chosen sister Marg, for knowing exactly what to say and do and when, always authentic. 

*

An early morning quote from my friend Danni, perfect set of words and timing. Strong Women stand together when things are rough, hold each other up when they need support, and laugh together when there’s no reason to. WorkingWomen

Danni is coming at 7.00am, an opportunity for Stan to go to a car event, spending time with friends in The Early Falcon Car Club of Victoria. Comfortable in my pyjamas I had said, ‘I will be dressed as being up early is now my pattern,’ not today. I breathe, take time, my mood deciding when rather than the clock or my self-imposed pressure. Spending time with Danni in a new way, vulnerable, her wanting to care as she loves to. 

Wanting to fill the quiet, struggling to not tell stories as Danni reads. Finally sharing openly and honestly in our easy way Danni says, ‘This feels different and I’m comfortable with us not talking.’ Danni is comfortable in her silence. Her strength of being in the here and now is clear. I have always admired the way Danni moves through her home spending time inside, outside, reading, writing in her journal. I think Danni imagines I do the same, but I haven’t until now. Or have I? An occasional favourite place to sit outside but it hasn’t felt natural, wanting to be on the move, to be active. Watching and learning from Danni is helping me to be another way in my home. 

Gratitude: To my wise friend Danni for her friendship and taking this journey, a challenge of a lifetime. She came on the Cathy Travelling website journey and she is coming on this one, the most important one. I am grateful. 

*

Cheryl my friend will visit tomorrow. Cheryl’s personality, needing to have all bases covered, one of the many things I admire about her. I imagine Cheryl saying, ‘You need to find out why this happened to you?’ I come up with a self-righteous response, ‘I trust my specialists.’ This scenario swirling, Cheryl may say this or not. I am making up a story. If she does it will be from a place of kindness and concern not from a place of judgement and criticism and if it is, then what I do with this is up to me. So easy to write, so hard to do. 

Cheryl arrives with thoughtfulness in abundance. A lavender tea towel from Provence, France where she visited last year. She saw it, had to buy it. It has been waiting for her to give, perfect timing. She brings a bottle of soda water, asking for champagne glasses to share a drink, and flowers because she knows I love them. Cheryl was too scared to send flowers earlier because she didn’t want to cause more pain, not knowing if they would add to my lung problems. Confused like I am, not fully understanding what is happening with this my overactive immune system, Cheryl has done her research on Wegener Anca Vasculitis, has no questions and understands the seriousness. 

Knowing Cheryl as I do, she will have thought of every possible option and way to be there for me. To listen and tell stories to take me beyond myself. We talk of her family and of the Black Saturday Bushfire Ten Year Anniversary. Marysville was Cheryl’s childhood home. How have so many lived through and with this catastrophe? How do they acknowledge an anniversary? How do they comfort themselves? I have no idea. I cannot imagine. I have no right to imagine. ‘Cheryl, you are on my keeping close list.’ ‘I already put myself there.’

Gratitude: To Cheryl for the joy she brings, and to know she did all this today to give comfort and connect.

Each in their own way, with a smile, Marg, Danni, and Cheryl comment, ‘You are always active, often overactive, an overachiever in everything that is important to you. It’s not surprising your immune system is overactive too,’ I smile. 

*

Penny sends an image of an angel. Penny too is going through her own health crisis living with cancer. Originally chemotherapy then to natural therapies. When Penny told me six months ago, I tentatively responded, ‘You have to do what is right for you.’ I was in shock wondering how she went from having chemotherapy as I sat beside her in the hospital, and what seemed like only days later she stopped. I don’t believe in natural therapies when it comes to cancer. I don’t believe in natural therapies when it comes to this autoimmune disorder. 

Penny believes I am in isolation. You could call it a white lie, but it is true in a different way. ‘If you can be in isolation for your physical health then you can be in isolation for your mental health,’ this is what I tell myself. I am fearful of getting a cold or flu and because Penny has cancer her immune system is compromised. I don’t have confidence that she totally gets this. And the isolation for my mental health: I don’t want to hear Penny’s rants about chemotherapy and conspiracy theories. I cannot deal with the confusion she brings. It’s either taking drugs or death. How could I choose death. I want calm. My response to Penny may be unfair but at this stage I can’t take the risk to be dumped on, not be seen, heard or understood. I may be underestimating Penny, but I cannot underestimate my need to be true to and take care of myself.

Penny is anxious, waiting for the latest results from her cancer tests. She lets us know there is nothing nasty growing, I am confused by her message. Initially Penny said it was stage three cancer. Does this mean the cancer hasn’t spread? Penny and I each responding so differently to our own health catastrophe. I reply. 

What wonderful, wonderful news 💜💜💜

Penny responds beautifully and I fully realise even though I don’t agree with her natural therapies approach she is doing what is right for her.

*

The Early Falcon Car Club, Victoria, more than passion for cars. Stan’s phone ringing, his friends in the car club always checking in, asking how I am, making sure he is doing okay. Beautiful flowers from Robyn and Don, perfect. Kon and Sophie and so many others wanting to visit. Stan’s friends, my friends, always showing kindness. 

*

I have faith my friend Connie cares. Why hasn’t she contacted me? My cherished Connie more than a work colleague hasn’t been in touch. I know she will be here for me. Wondering: is she needing to take all of this in, to have her emotions in check with some quip about having a condition that is rare and overactive like my personality. Has she read the texts I sent from hospital? Does she understand how serious this is? I want to explain away her lack of contact, to stop the hurt with excuses: she didn’t get the messages I sent, something major is going on in her life or she is too upset to visit. My mind swirls with stories trying to understand why she hasn’t been in touch. 

I message Connie letting her know I am home and inviting her to visit, wanting to share with her this the most important journey of my life. Her written response something like, I am in overload this week. I want to write you are in fucking overload, come and spend some time in my body, head and heart. I respond, Take care. Will Connie be my first test? 

*

Daily Caption: Family and friends, Friday 22 February. Swirling, an affirmation: I am surrounded with kindness, I surround myself with kindness and love. Playing with the wording knowing kindness is the essence. Our home giving a place to share kindness, compassion and to connect.  

Affirmation, Kindness and compassion surround me  

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