Now, more than ever, the Latte Lounge virtual coffee shop seems like the perfect place to share stories of strength, positivity and sunshine. I was honoured to be nominated for, and chosen as, the winner of their Inspirational Women competition to mark International Women’s Day 2020. So I was delighted to be invited as a guest blogger, to share a post with you all about what it means to be a strong woman living under the cloud of chronic illness.
Having been diagnosed with Crohn’s Disease at the age of three, it is hard to answer the question: ‘What’s it like to live with chronic illness?’ For me, living with chronic illness is simply living. I know no different.
What is Crohn’s?
Crohn’s belongs to the Inflammatory Bowel Disease (IBD) family of illnesses. It is an autoimmune disease, which causes inflammation of the bowel. In simple terms, my body attacks itself. I spend a lot of time struggling with abdominal pain, nausea, dizziness, fatigue, muscle weakness, joint pain, rashes, mouth ulcers and the most extreme brain fog you can imagine. There are several secondary conditions caused by Crohn’s and a number of ways in which a sufferer’s body can fail them.
I have lost count of the number of ways my own body has failed me. Despite my sunny exterior, I spend a lot of time feeling faulty; defective; broken.
Separate the person from the disease…
Like so many people living with an invisible illness, I have spent years working to separate myself from my condition. It is crucial that I am never defined by it – I have Crohn’s Disease and there is no escaping the fact that it affects me daily. This doesn’t mean I am Crohn’s Disease.
I am strong, positive and brave. I am a fighter. I have learnt to be all these things instinctively, because that is how I survive.
So am I who I am because of my illness? Or would I have been this way even if my insides weren’t at war with themselves?
Spirituality and illness
At the start of April, we celebrated Passover in lockdown. I’m sure Jewish families across the globe found ways to be together for this special festival, despite being isolated.
Maybe it was the unusual way my husband and I celebrated this year, which made me pay more attention to the words in the Hagaddah (prayer book) but I stumbled upon an interpretive comment which struck a chord.
In part of the service, we talk about our hope for next year, with the words: ‘Next year in Jerusalem.’ I’m sure we were not the only family who added in our own prayer to be: ‘Next year together.’ At this part in the service, we pray that when Passover comes round again, we will be blessed with the freedom to conduct another Passover service.
In my modern Hagaddah, edited by Jonathan Safran Foer, a commentary by University of California Professor, Nathanial Deutsch, caught my attention. He talks of both the Kabbalistic and Chassidic perspectives on this prayer.
The former interprets it as a plea that we shall again become complete; whole; unbroken – as a people; as a religion; as individuals. Deutsch goes on to examine the Chassidic view of brokenness, describing it as a virtuous state of being. The Chassidic expression: ‘There is nothing more whole than a broken heart’ explores the notion that without first being broken, we can never expect to be whole. Deutsch asks whether it is, therefore, ‘more Jewish to be broken than whole? Or is the point of Judaism the attempt to find wholeness in brokenness?’
I am not sure I have ever considered this on a theological level but, like I said, I have spent lots of time wondering what it means to be broken.
In case this sounds bleak, let me digress and tell you something about my childhood.
Growing up, I learnt many valuable lessons. Some I was taught by my big sisters, some I picked up from my own observations of the world, many I discovered the hard way and others came from pearls of wisdom my mum passed my way. In amongst those, is one key philosophy upon which we were raised.
The mantra was that if something is broken, we love it even more.Teddies whose stuffing was bursting out, dolls whose hair was thinning, ornaments where paint was chipped, musical toys with loose connections…in fact, anything less than perfect deserved more love than the rest.
Hindsight is a powerful tool
All these years on, I can’t help wondering whether mum’s own determination to love the broken things even harder, stemmed from something more deep-rooted than an ideology. Could this lesson, which I always thought was instilled to deter us from nagging for replacement play-things, actually have been geared towards encouraging us to embrace our own flaws? Could it be that mum was trying to prepare us for survival?
Her youngest daughter (yours truly) came off the production line with more than a couple of faults. Mum hates hearing me describe myself that way; she would certainly never use those words.Yet chronic illness means a person’s biological structure has not turned out how it was supposed to. We could look at it as a glitch in their DNA. Some conditions are caused by genetic mutations, others are the result of chromosomal imbalances. All manner of factors can contribute to a person’s overall health, or lack thereof.
The fact remains that chronic illnesses, more often than not, are perceived as defects – particularly by the sufferers themselves.
Maybe it is not a coincidence that I’m drawn to ramshackle houses, dilapidated barns, ruins, battered leather, worn shoes and knotted wood. If something tells a story through its wear and tear, I am immediately attracted. Like I said, it is a lesson I have carried with me since day dot.
War wounds and battle scars
In my twenties, I was offered laser treatment to remove the scar that runs down my abdomen. It is the scar from three major surgeries, each of which saved my life. My consultant joked that ‘we should insert a zip.’ I’m not sure that I laughed much at the time. It is not a pretty thing, as you can imagine. That said, the suggestion of trying to remove evidence of the battles I’ve fought and won is preposterous. I may not like my scar, but it tells the tale of several chapters of my life. It is my mark of survival. It is a part of me. So I don’t love it, but I accept it as part of my story.
I once wrote about Kintsukuroi – a Japanese method of treating pottery. This beautiful Japanese artform has a deep philosophical meaning which echoes the Chassidic views I discovered at Passover. Incorporating a pot’s cracks and crazes into its design, the Japanese artist enhances the item’s beauty through its damage. The pot becomes even more beautiful – more complete – by first having been broken.
As human beings, our scars are merely clues to past events and memories. The break does not destroy the Japanese pot, but presents an opportunity for change. Just as the broken heart is not beyond repair, but rather paves the way to be loved more fondly by someone else. What one person sees as signs of wear, another will read as decoration. What one person sees as weakness, another deems as an opportunity to offer protection and support.
So why do we reproach ourselves for the cracks in our own journey through life? We are all so quick to bury the bumps and bruises we withstand; it seems instinctive to want to hide our failures, deny the existence of our mistakes, lament our flaws and berate ourselves for being anything less than perfect.
Yet religious, cultural and spiritual beliefs hold brokenness in high regard.
Ask me again…
Returning to the original question: what is it like to live with chronic illness? I will say again: what is it like to live? Life is painful, exhilarating, troublesome, exciting, challenging, wonderful and so much more. Nobody goes through life without their own fair share of baggage. Of course, the baggage is all relative – what scars one person may not even register as a bump in someone else’s road.
So, what if we decided to appreciate the beauty and the positivity we all hold within us? A stained glass window is nothing more than broken shards of glass, put together to become a thing of beauty. A mosaic is simply fragments of ceramic, given new lease of life as a piece of art. A broken heart is just a heart which beats a little differently. Each breakage is nothing more than a punctuation mark in our journey through life – a chapter in a much bigger tale.
Our flaws are nothing to be ashamed of. Being broken is not what defines us, nor is being ill. It is how we choose to recover, how we fill the space between the breaks and the way we deal with each new crack, that speaks volumes about who we are.
Ultimately, life is what we make it.