Newsletter #7: Wishing on a Dandelion

Dear All,

I hope you are well.

There has been a flurry of online activity in the past couple of weeks in relation to some of my videos, which were picked up by large platforms such as Insider ArtBored Panda and the New York Post, amongst others. Combined, these videos have now had nearly 20 million views. 

I also had the opportunity of speaking with Eva Radich for her arts programme "Upbeat" for RadioNZ. You can listen to the recording here.

I am always very grateful for these experiences. The virality of social media never ceases to amaze me. But does this kind of exposure really amount to anything? I'm not so sure. What I have noticed is that when I get a wave of large scale exposure like this the trolls come out. For example, someone one posted one of the videos of me knitting (all 14 seconds worth) on Reddit. The hundreds of comments that followed were mean spirited and down right horrible claiming that I was a terrible teacher. The fact that it wasn't meant to be an instructional video didn't seem to matter at all. Now, I know not to take these things to heart and apart from being reminded, once again, of how quickly people pass judgment on others, I didn't lose any sleep over it.

What I also realised though is that people new to my work don't know the back story. The context is very important to me because my work was borne out of a very challenging period in my life and comes from a deep place within. I am not driven by a commercial imperative. This is no flash in the pan for me.  I'm not someone who is jumping on some trend to make a quick buck because the truth is I'm at the very core of that trend. My work is my salvation from years of post natal depression and high anxiety. I am learning how to live a creative life every day and am transforming myself with every stitch I knit and every piece I make. I am also trying incredibly hard to pass my learnings on to others who find themselves in a similar position. This is very meaningful work to me.

At the heart of it all is my Mother, who nearly died of a terminal lung disease in 2009. Hers is an epic story of courage, love and determination in the face of certain death. Apart from her own mother,  my mother has lost every member of her immediate family to the same disease. Mum has written a book about her experience and it is now available for purchase through my website. You can purchase a copy here. It is an important and uplifting read and I recommend it to all. It is especially meaningful though to those of you who may be living with a terminal illness, whether it be your own or of someone you love dearly. 

If you have the time, I've also written below a snippet of my back story, specifically the events  around my Mother's life saving transplant. I hope I don't upset anyone but I like to keep things real.

Take care and all the best.

Much love, Jac xo

A Turning Point

Nothing has a stronger influence psychologically on their environment and especially on their children than the unlived life of the parent.
— Carl Jung

On a visit to my Mum and Dad’s place in 2007, Mum and I were engaged in one of our meaningful, big picture, life affirming (oh my god you are gunna die) conversations. I remember it so vividly. I sat at the kitchen bench. Mum was on the opposite side making us a cup of tea when she turned to me and said, “my greatest regret is that I have never fulfilled my full potential”. Those words hit me in the solar plexes. I was so pained for my Mum that my reaction was visceral. I felt dreadful for her and her comment shook me to the core. It also unlocked something so profound I nearly fell off my chair. That was a call to action if I’ve ever heard one. As far as I am concerned, in that moment, my mother gave me a precious gift and in doing so fulfilled her full potential as a mother and human being. I made a pact with myself to upturn every stone to find whatever it was that I was looking for so that when my turn came I could say to my children that I had fulfilled my true potential. And I would do that for not only myself but also for my mum so that those precious words would not have been spoken in vein.

Those words completely changed my life. I spoke to the universe in earnest. For the first time in my life, I practiced positive affirmations and slowly but surely started to make progress. I was tired of living in fear I was fed up with not taking responsibility for my experience of life. I was tired of letting life just happen to me rather than set my own pace. I was tired of going through the motions. I had become an observer of my life rather than a participant. My pay-off was that I didn’t need to take risks but the price I paid for that safety was now making me physically ill. My body, through a sustained and rugged period physical illness, was in revolt. The further I had moved away from my creative self the unhappier I had become: depression, anxiety, pneumonia, rapid weight loss and abdominal pain. While I could ignore my intuition begging me to take responsibility for my life, I could no longer ignore the physical symptoms of a breakdown. Mum’s words drew a line in the sand from which I have never looked back.

 

The end for my mum, or so we thought, came in the last weekend of October 2009. On Friday 30 October 2009 I was moving house and was racing against the clock to be out on time. As part of the settlement terms, we had five days to pack up our life. It had been a crazy week and I was running on nervous energy. I had called Mum that morning to see how she was. I was already concerned for her well being after spending the school holidays with her two weeks previously. I had gone up to help Mum and Dad get through the transplant listing process. Mum had clearly deteriorated and was now unwell enough to make the transplant list. Listing though is a grueling process and there are no guarantees. Daily trips up and back from Brisbane were stressful and exhausting and the wait for news as to whether or not Mum made the list was excrutiating. I had helped Mum arranged a portable oxygen machine she named Maggie. Maggie went everywhere with Mum or more to the point, Mum could no longer go anywhere without Maggie. Watching someone struggle for every breath is very confronting and I would often turn my head to disguise my acute distress. I had never held on so tightly in my life.

So when my Mum could barely talk to me over the phone that morning I knew we had come to the end. I was overwrought and panicked because I knew this was it. Stupidly, I kept calling her throughout the day to make sure she was okay. Stupid because this caused her to exert energy which she couldn’t spare but I think I was just checking she was still alive. For all our pragmatism and stoicism over the past three years, it occurred to neither Mum nor I to call an ambulance. It’s ridiculous when I think about it but we were almost paralysed by our acceptance of mum’s inevitable passing. In the absence of a call from the transplant team there really was nothing to be done. On the other hand, when my sister called my Mum early that evening after hearing of my concerns, she went straight into action mode and before I knew it mum was in the ICU ward at Tugun Hospital. By then, Mum’s struggle for air was so horrific and violent that the doctors offered to intubate her. Mum knew that there would be no coming back from intubation so she refused. Her stubborn determination to hold on for as long as she could was awe-inspiring and, in fact, life saving. Instead, they placed mum on a CPAP machine, which is essentially a full face mask which causes the lungs to inflate through pressure.

By Sunday, I was flying up to the Gold Coast to say my goodbyes. Elodie, only 2, came with me. I found mum in state of calm acceptance and grace but the CPAP machine was noisy and it was difficult to talk. If this experience taught me anything to pass on to families who find themselves in a similar situation it is this: say everything you ever want to say to a terminally ill loved one while they are still well enough to hear it and comprehend it and when you are in a loving and safe environment. Once you are in the machinery of an ICU ward you feel very vulnerable and exposed and scared and the opportunity is lost.

Nonetheless, we fumbled our way through it, Elodie providing mum with tremendous joy and many tender moments. We didn’t know at the time but two opportunities came up for transplant that day. By late afternoon, the staff advised us to go home and pack some clothes for mum. They were relocating her to Brisbane’s Prince Charles Hospital (the same place her father had died) were she would be in the care of the physicians who had managed her care for the past three years. Our assumption was that she would be placed in the palliative care unit.

As we were leaving the ICU that afternoon that my Dad, who is all thumbs, received a phone call on his mobile phone. Mum had purchased the phone for Dad as soon as she was listed for transplant. He was an emergency contact for the transplant team. The only people apart from mum who had his number were the transplant team, Kris and myself. So when Dad’s phone rang we looked at each other as Dad scrambled to answer the phone, with Kris and I quietly willing him to get his fingers and thumbs in the right place. Eventually he did and we were told to get up to Prince Charles as soon as we could because Mum was going to get a double lung transplant. There were no guarantees of course but we were in for a shot and that is all we needed.

We raced home. We packed things for mum and ourselves. We knew we were in for a long haul. I arranged for some friends to take care of Elodie for the night. I called my mum’s beautiful brother John, a former Lieutenant Colonel in the Australian Army. We could barely manage to string a conversation together but he wished us love and peace. I can’t imagine how that dear man must have felt. To potentially loose every member of your family to the same disease and be the last man standing, wondering what was ahead for you. The pain and worry must have been immense. (On a very sad footnote, my beautiful Uncle passed away from the disease in January 2014)

I drove white knuckled to Brisbane with my Dad and Elodie. Dad and I share a need for solitude. We both needed quiet and smooth passage in that moment so that we could process the turn of events. All the while, my sweet little 2 year old, the image of my mum, chatted the whole way. We arrived at Prince Charles ahead of Mum. We eventually met up with her again in the ICU ward. ICU wards are challenging places. They are hot and noisy and full of gravely ill people. It is very traumatic. The energy is heavy and sad but the nurses shine like lights in amidst the darkness. The physician on duty that night was Dr Dan Chambers. Mum had been in the care of a number of lovely, if not handsome physicians, in respect of whom we had secretly given nicknames. Dr Chambers was my outright favourite and so I had claimed naming rights for him: Dreamy Dan.

Knowing that mum was in Dreamy Dan’s care was hugely comforting and reassuring. Our collective regard and trust for him was immense and he had come to know us as a family well. He had great respect and concern for mum and his loving treatment of her went above and beyond. At 2.30am on Monday morning, we watched the transplant team wheel mum’s gurney down the corridor into surgery. What seemed like a cast of thousands, these beautiful walked beside her with such reverence I am sure they must have been angels.

The events of that night and the aftermath of mum’s life saving transplant are so immense, so traumatic and so loaded with such intense emotion that I don’t even know where to begin. My Mum’s story is so rich and compelling that it deserves to be told in its entirety in her own words. Suffice to say that according to her surgeon if Mum’s life was being measured by a clock she had but 15 minutes to spare. Mum at 61 was, at that time, the eldest person in Queensland to have received a lung transplant. Mum’s surgery was a success and her post recovery was textbook.

The fact that mum had received a double lung transplant was remarkable in itself. The reality is that most lung donors are beautiful young men who are killed in car accidents. Their lungs are so large that it is typical that only one is able to be fitted into another’s lung cavity. Since she had lived with IPF for so long, Mum’s chest cavity had shrunk as her lung tissue hardened. This meant her chances for a double lung transplant were minimal. So the fact that she received a two lungs was bittersweet because it most likely means that the donor was a child. Our hearts still bleed for the gracious and loving donor family who gave mum a second chance of life. Transplantation is an incredible experience to go through and we are lucky to live in a country that supports it. People have different opinions about transplantation and if I ever find myself involved in those conversations I say only this: unless you are prepared to give do not receive.

As an aside, unbeknown to me at the time, as I flew north to say my goodbye’s that Sunday, Eric and Remy walked through Sculptures by the Sea and ended up in the Waverly cemetery overlooking the beautiful Pacific Ocean. Mum loved the ocean and so it was a fitting backdrop. Remy found a dandelion and, as is tradition in our family, picked it up and made a wish. He then turned his little face to Eric and said, “Dad do these wishes really come true?” Eric replied, “Only if it is a genuine and heartfelt wish.” “Oh good then” said Remy, “because I’ve just wished for Nan to get a new set of lungs”.

Less than 24 hours later she did! It was nothing short of a miracle.

 

A vision

Those that don’t believe in magic will never find it.
— Susan Jeffers

 

I stayed with mum and dad for a few weeks to help mum in her post recovery. We were filled with gratitude and relief and felt so fortunate to have been given a reprieve. The post recovery haze was a surreal time in my life. I found myself occupying a heightened state and I was very aware of it. I was certainly disconnected but not in the way you feel through a bout of depression. This time, there was light and colour. Life definitely had a new meaning and I carried a sense of hope that anything was possible. I eventually returned to Sydney, moved into our new home on the Northern Beaches, celebrated a very special Christmas and met the new year, 2010, with a new frame of reference.

I then had a dream. Actually I’m not sure it was a dream. I seems more like a vision to me. It just makes me feel silly to say so. There was a notable absence of imagery, everything was black. In it a big loud booming voice commanded, “You need to knit and it needs to be big.”

Whoa! Where did that come from? The voice was so startling it woke me from my sleep and I was terrified. I had been asking the universe to show me the way, to send me a sign, tell me what to do for so long that I didn’t dare question it. There was no way I wasn’t going to listen to that voice. That was it……the beginnings of Little Dandelion.