I know I’m not the only one to ever go through a life changing event and I know I won’t be the last. In many ways my diagnosis isn’t that big a deal and many people view it as that and tell me so. Probably to try to make me feel better but it rarely does and of course, when it’s not happening to you, you can’t fully know and understand the impact. I remind myself of this when I want to scream at people ‘but it changes my whole entire way of being in this world’.
The first week of knowing I had allergic bronchopulmonary aspergillosis* was a frantic dash to understand everything I could about it. I’d read around it as knew I was being tested for it but as with all of these rare conditions, it’s a bit of a minefield and the ABPA diagnosis was just the tip of the iceberg. I also have aspergilloma, the fungal mass measuring 3.3×1.1cm which had made its way into the top left lobe of my lung, beside my heart. The pain in my left shoulder blade over the years never gave it away and I couldn’t possibly have imagined that I have mould growing in my lungs. I couldn’t possibly have imagined that this was even possible. Who’s heard of it?! Just 1% of asthma sufferers will be affected by ABPA and even less have the chronic form.
It’s been a slow dawning realisation that I’d need to stay away from soil, trees, plants, dust as much as possible if I was ever to recover and stay well. In the second week of diagnosis I took myself off to the beach with my puppy Boinn. It seemed the obvious place to retreat to to try to make sense of it all. The fresh crisp air was felt almost immediately. I felt I could breathe deeply without worrying I was being infected breath by breath. I was also still getting used to the medication – oral corticosteroids for inflammation which make my heart jitter, my hands shake, and sleep feel impossible. The antifungal tablet, itraconazole which makes me nauseous and extremely sun sensitive, which I am anyway being Irish. And I had time to process, let the dust settle and face this thing with as much grace as possible.
Being away gives a different perspective. Helps things be seen as they are, and it was here that I realised my former life was slowly being taken from me. Everything I’d ever studied, trained for and have experience in, is to do with nature and I knew I’d have to find another way of being in this world if I was to ever be well again. My first degree in nature conservation led me to work in horticulture and woodland conservation. In my 30’s I landed what I thought was a dream job at the time, creating England’s largest new woodland for the Woodland Trust. We planted 600,00 trees over 10 years and whilst doing that I become a part time yoga teacher and I set up a small business called Woodland Yoga. My love for trees and woods is not rational. They have given me so much support over the years that I wrote a thesis for my master’s degree on it entitled Nature’s Healing Hand. It depicts how my childhood traumas were supported by nature and offers a framework to how this can be achieved. My goal was to one day offer these kinds of services to others so that they too may benefit from natures ability to soothe and heal us.
But by some cruel twist of fate, the trees have given me a life-long chronic illness that means I need to stay away from them. The reality of this is heartbreaking personally and professionally. I go to nature to be soothed daily, to have my senses put back in order. If I can’t do that, I think I might just go a little mad. I think I’d rather it was lung cancer as it was first diagnosed. My whole being is rooted in nature, how am I supposed to change that. At least cancer wouldn’t take all the things I love bit by bit. Or maybe it would have but in a different way. I know I can’t downplay the reality of a cancer diagnosis and how serious that is but for me personally, I think it would have been a kinder option that the universe offered me.
But we don’t get to choose, so I find myself in a different kind of wilderness. Not the kind that feels evocative, awe inspiring or beautiful in any way, but threatening, fear inducing and very ugly. It’s the kind of wild that our ancestors were fearful of and did everything they could to tame. They created stories, myths and legends to make sense of it and eventually domestic it and I’m wondering how and if I can do the same. This feels like the biggest obstacle I have and will ever face on my life and spiritual path. The Buddhist philosophy is that the obstacles are the path, they provide the growth areas, ways to know our humanity more fully. For some of us it seems our boulders are larger than others. For some they are smooth and round and often roll along quite nicely, and others are heavy, jagged with thorns sticking out ready to take us down at any moment. How we respond to the challenges is what really matters, I know this, but can I now put it into action?
I sometimes wonder if I’m being overly dramatic, that actually this isn’t how it is, and I’ll be fine. I just need to take the antifungal medication for four months and it will all be gone. But I know that’s not the reality and even if it was, if I continued to reinfect myself by spending time in the woods, I would always be ill, and I’d always have to take the drugs. The side effects and the symptoms from the illness would be too much to bear as I have already found out. Fatigue, weight loss, malnutrition; these are my main symptoms from the illness. My lung capacity has somehow maintained fairly well, no doubt due to the yoga practice but that would deteriorate as I mostly likely also have bronchiectasis, a widening of the airways which allows infection to perpetuate.
My irrational mind tends to go over what I could have done differently, and it’s been helpful to call this out, to lay it bare so that I can see it has no substance. There’s no blame, there’s nothing I or anyone else could have done. It’s just dumb luck that has landed at my feet and given me a chance to question everything I thought I knew about myself and my world. But still I go there with the ‘if onlys’; if only I’d not had childhood asthma, if only I’d not contracted covid which is likely what caused the damaged in my lungs, if only I didn’t love nature quite so much I’d have spent far less time in her presence, if only I’d prayed harder or practiced more, or eaten better or done more exercise…. I recognise how futile and pointless it is to dwell here, so I move on.
I feel that I’m at a cross roads, writing this on the eve of Beltane, the Celtic fire festival which is said to be a powerful portal of change and transformation. Change is always uncomfortable, but this feels like I might burn up in the process and what will be left is remnants of a life that I loved, that I fought and strived so hard to create. I want to shout ‘it’s so unfair’ like a small child that doesn’t get to have her favourite toy. I want to rile at the universe for this sick joke and hope that that will make it go away. But it won’t, nothing will, and I know this is a turning point in my life. For better or for worse, this is where I am and I have to remind myself that in this moment I’m okay, relatively, and try not to let my mind wander to the future. It’s so hard to not let the next 10/20 years play out in my mind. But for me, this is cancer by another name; an abnormal growth impacting on a vital organ. It has the potential to break off and grow elsewhere in the body becoming invasive. Unlikely now I’m under medical care but a reminder of the seriousness of it and a reminder that whatever I do from now on will be decided with this diagnosis at the forefront of my mind.
*Aspergillosis is the name of a group of rare conditions caused by a species of mould called Aspergillus which is found in the environment and our homes all over the world. Most people breathe in the spores every day without becoming ill but some people with weakened immune systems or lung diseases are at a higher risk of developing health problems. You can read more about the condition and its impact from the National Aspergillosis Centre based in Manchester, UK HERE.
About the Author
Louise Neicho is a yoga and mindfulness teacher based in Hertfordshire, UK. She shares the wisdom of nature through ancient and modern practices, her writings and research. You can follow her journey and connect with her in the following ways:
Web – www.woodlandyoga.co.uk
Email – louise@woodlandyoga.co.uk