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Ticking the boxes

I wrote this a couple of months as a submission for Issue 5 of the incredible Drawn Poorly Zine. Drawn Poorly is a Manchester-based project providing arts opportunities focused on chronic illness, disability and mental health conditions. Issue 5 invited people to submit words, art and photography that explored the theme of “FOMO” Fear Of Missing Out. Drawn Poorly is keen for access for all chronic conditions, disability and mental health conditions to be considered for everything. Their mission is to continue honest and important dialogues about chronic illness, disability and mental health through their work and supporting artists to do the same. Their zines and events have certainly helped me to navigate my own chronic illnesses and they provide a much-needed platform for other chronically ill creatives to get their voices heard. If you’re able to, please consider buying a copy of one of their zines, prints or postcards so that they can continue to do this incredibly important work.

Order your copy of Issue 5: FOMO online now.

My happiness used to be measured in A grades and textbooks – I wanted to be a doctor. Academic success was what I thought was best. It sketched out a pretty neat and linear life for me. Without me realising, I had subscribed myself to a belief system that centred on box ticking. I thought I would finish university and seamlessly transition in to a medical training programme where I’d be 100% satisfied with my job. I would meet someone, they would be amazing and things would be really easy.

Together, we would tick the mortgage box and maybe even get a dog. We would be married by 30 and I’d have an established career with a great circle of friends and fulfilling social life that I’d juggle effortlessly. I imagined that we would probably have kids. They would be so happy and loved. I might do parkrun on Saturday mornings and maybe even train for a half marathon. I would push myself physically and intellectually to stay rounded. I would shop locally and sustainably, cooking with fresh produce of course! I would see the world, learning from different cultures and soaking up everything it had to offer. I’d have a couple of hobbies, they would be low-key but worthwhile all the same. Maybe I’d learn to play a musical instrument but if that didn’t happen, I knew I would still go to loads of gigs and keep up with my love of music, making sure to seek out new bands and support upcoming artists. I’d sleep a full 8 hours each night and my hair would have a healthy gloss to it, everything would be dead easy. Relationships with my family would remain strong, we’d grow older together and our roles would change but it would all be okay because I’d be able to do it. I would handle things well and take it all in my stride, everything would be absolutely fine.

Of course, I know this was and is naïve way to view the world. I think I felt like this around age 14-18 because I was an invincible teenage, probably as a side effect of growing up with too many Disney films and the dreamy windows of opportunity wide open. I know now that nobody’s life maps out according to plan. It will never, ever be smooth sailing. It took me a lot of learning but I slowly realised that all this wasn’t really my checklist. Social conditioning had crept in – as it does with most people – to make me think that happiness could be measured arbitrarily according to just how many boxes had been ticked by a certain age. Similar to how many levels I’d completed on Crash Bandicoot but with slightly more consequences. It would be dishonest for me to say that I have shied away from every box completely, I don’t think I will ever be able to do that fully but life experience has taught me that there is far more important stuff than whether I have 2.3 children, a house with a garden and a car parked on my drive.

My grand life plan didn’t account for the fact that I’d tick 3 completely unexpected boxes containing some difficult chronic conditions. It didn’t bother to mention that some of my earlier goals would be almost unattainable due to not physically being able to make it to enough lectures. My body just couldn’t keep up with the pace of my ambition throughout my twenties. Sometimes, I can’t even make myself a cup of coffee, let alone do any running. I’ve missed so many weddings, parties and other fun stuff that I would love to be part of. Sometimes, even when I do make it along to events like this, I’m not fully present and can’t connect in the way I’d like to. Being unwell so often limits the fun stuff that I can sometimes find myself being really quite bitter.

Travel insurance is so expensive it becomes prohibitive, I haven’t seen anywhere near enough of the world and I’m not done exploring yet. It’s exhausting holding down a full-time job. My energy is spent on getting through the basics, I don’t have any reserves for cooking or those other ‘wholesome hobbies’ and maintaining the bare minimum is enough of a challenge.

I think now, my FOMO has switched focus. I no longer worry so much about achieving ’30 before 30’ or having a 5 year plan, or much of a ‘lifeplan’ at all. These experiences have helped to clarify a lot of things. Now, my measure of success is happiness. The friendships I do sustain have become so much more important and real. Valuable experiences and memories get me through the days when I can’t leave the house. I am no longer hell-bent on acing exams and I don’t set myself goals just for the sake of ticking a box. Chronic illness has made me think about what is truly important to me and what aspects of my life are completely non-negotiable. It’s taught me a lot about my personal values and sometimes the challenges it brings just make me more determined to live life in a way that works for me, not the way I felt I should live it. FOMO is real, I still want a dog and hope I’ll get married one day but I’m no longer in such a rush.

Bonfire Night Black Peas

Now for something a little different: distracting myself from the world by writing about my favourite Autumnal tradition on Bonfire Night. Scroll down for the first of many collaborations with talented illustrator Emily Maud who created an incredible image of the scene based on my words.

My Mum introduced me to the autumnal Lancashire delicacy of black peas. I can remember being around 7 or 8 and it was Bonfire Night. There was a cool, crisp bite in the air and a sense of anticipation building as we huddled together in a field waiting for fireworks. I was kitted out under strict instruction to ‘wrap up warm.’ The cupboards had been raided to find hats, scarves, gloves and our ‘big coats’ to protect us from the evening chill. My cheeks were rosy as the only part of me exposed to the welcome warmer smoky air from the bonfire. By this point in my childhood, I had already developed a love for the usual treats of Bonfire Night. The prospect of treacle toffee and fireworks made it even more exciting. Hot dogs were never usually on the menu for tea, so for me, the prospect of colourful explosions in the sky and a slice of parkin thrown in for good measure meant that this was a night I had been looking forward to for ages.

Illustration by the incredibly talented Emily Maud who read my words and provided a beautiful illustration to match, capturing little me in a field on Bonfire Night trying my Black Peas for the first time surrounded by grown ups and sparklers.

This year was a little different. I was presented with a small plastic cup of steaming hot purple-brown mush. There were instructions delivered with my first taste of black peas: best enjoyed when it’s cold outside and serve with lashings of malt vinegar. I must admit, I was dubious at first. The colour was alien to me, weren’t mushy peas meant to be green? They didn’t look as though they would taste nice. The peas were swollen to the size of chickpeas and the mush or gravy made it look even less appealing. The whiff of vinegar seemed to heighten my senses but that could have just been the cracks, fizzes and whistles that were jolting me occasionally. “Go on, give them a try.” I needed the prod, black peas looked pretty unappetising to me.

They taste of collective “Oohs!” and “Ahhs!” and despite being dreary in the colour stakes, they transport me to golden shimmery sparklers, bright and glittery bursts of pinks and greens in the inky blue, black sky. The modest cup of vinegary peas brings the atmosphere and tradition. It has been passed down and shared between circles of friends. It has been ridiculed and has had to be seen to be believed. Black peas are a foreign concept outside of Lancashire, they are geographically specific to towns like Bury, Rochdale, Oldham, Wigan, Bolton, Heywood and even Preston. Although all born in Rochdale – one of the first industrialised towns famous for cotton spinning – our family moved to Cheshire, only 45 miles away but a world away when it comes to traditional Bonfire Night treats.

Sharing the joy of black peas is a labour of love, especially for my Mum. In early November each year, she returns to Bury Market – Britain’s favourite market 2019 – to stock up on her black peas, also known as parched or maple peas. She soaks them overnight in cold water with a pinch of baking soda. In the morning, returning to the pot and adding onion, boiling then simmering for several hours and adding salt and pepper before removing to cool. Crucially, lashings of vinegar are reserved until serving. After a while, the vat gets covered in tin foil and transferred to the back of her car. Black peas are best enjoyed outside and the tradition is shared, now with her work colleagues, who huddle outside in the November elements with their hands curled around warm cups of decanted black beans. They pass round the malt vinegar they once scoffed at with childlike glee, they know the rules now.

“You sound like you’re sucking on a helium balloon.”

The title of this blog also happens to be a comment I received from a new contact I’d made through work and had been working with over email for a few months before virtually ‘meeting’ them for the first time on a video call. I mean, the guy was absolutely 100% correct, I did sound like a children’s entertainer or Stuart Little. My voice on that particular day wasn’t that bad, it was better than it had been and my words were at least audible but they changed in pitched and were unpredictable. They certainly didn’t sound like what my ‘normal’ voice sounds like in my head, especially when verbalised.

The guy wasn’t being mean, I didn’t take offence. I think he was trying to acknowledge and make light of a strange situation. For me though, it was excruciating, I wanted the virtual ground to swallow me up, I wanted my internet connection to drop out and I wanted the meeting to wrap up immediately. Of course, when meeting new work colleagues or new people in general, first impressions count. I’m keen to come across well and in a work-setting, I want to be able to articulate points clearly. I definitely don’t want to sound odd or be at the receiving end of a joke during a work call with a stranger.

Over the past year or so, I’ve had several fleeting issues with my voice. Mainly as a result of a condition with my vocal cords that also impacts my breathing. Over the past 6-12 months, this has become more frequent, more disruptive and more unsettling as the periods of voicelessness have lasted longer and on several occasions, I’ve been unable to identify the root cause or trigger.

In lockdown, I had a period of 7 weeks where my voice was as a good as useless. For at least 4 weeks, it was barely audible. It rarely was able to produce a sound. I progressed to the odd squeak and undescribable noises, then what sounded like a raspy whisper and after numerous video calls with a speech and language therapist, I managed short bursts of conversation but would have to take breaks and use my voice sparingly.

In lockdown, I’ve had a further few episodes of voice issues and breathlessness, all lasting for at least a week and many appearing out of the blue. I’ve woken up from a nap and been rendered speechless, I’ve been sat on the sofa relaxing and had a coughing fit creep up on me and then been unable to speak for the next fortnight.

Not being able to speak and communicate in the way that you would like, not being able to freely articulate yourself and not recognising your voice when it leaves your mouth is really disorientating. When shielding during a pandemic, losing my voice has been even more distressing. Being socially isolated from friends and family, working remotely and being separated from my partner made me rely more than ever on my ability to communicate.

Zoom calls have become the bread and butter of the working day. They are scattered across my Outlook calendar more frequently than standard meetings, catch ups are scheduled to replace the casual chats that would naturally happen in the corridor. The difficulty being, these are usually group chats, they are tiring and crowded. The usual pauses that I’d rely on to know when it was okay to speak are missing. People talk over you, the social cues are missing from the meeting room. All of this is overwhelming when you’re really not sure if your voice is going to be recognisable or audible when you try to speak. It undermines points you’ve made before you’ve even attempted to make them. It only acts to isolate further as you have to decline meeting requests because your voice just doesn’t work.

This is the case for Zoom catch ups with friendship groups, quizzes, normal phone calls and even speaking to my Grandma – she can’t hear me at the best of times but when I can’t speak, we can’t communicate at all – surprisingly, she isn’t on email or WhatsApp. I found myself having to ration my voice, selecting when and how I would try to use it. I couldn’t have a casual chat to pass the time of day and I’ve lost count of the amount of phone calls I’ve missed from friends and messages I’ve sent trying to explain that “yes, really, I genuinely can’t speak at all…it’s not just a sore throat.”

As I type this, I’m having another period of forced silence as my voice isn’t working, I’m breathless and it’s uncomfortable to attempt to speak. The only difference from the beginning of the post is that, now, instead of sounding like I’ve been sucking on a helium balloon I’ve ‘matured’ in to sounding like Patty and Selma Bouvier, Marge Simpson’s sisters. Does that count as progress?

Thanks to Emily for pointing this out as it’s exactly how I sound right now. She also pointed out how strange it is to be texting me and reading my responses that are so fluent and ‘sound like me’ to then attempting to talk to me on the phone where I sound all husky like I’ve got a throat full of gravel!

Abrasion

I wrote this essay-style post as a submission for a zine. It wasn’t quite the right fit for them but it’s a response to the theme of ‘abrasion’ as it relates to the body and mind. Abrasion as a pain, a wound, friction, the scraping away of skin, a spot of raw flesh, a badly healed scar, a surgical incision site, a scab, exposure, a trauma. Can an experience be abrasive? Can a relationship? Can an invisible illness inflict a type of emotional abrasion; a tension felt inside, a process that grinds and erodes? Can an abrasion be confronted, articulated, overcome? If not, why?

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I am familiar with things that should still be abstract concepts but I do not want to be. I am accustomed to impersonal letters and consultations but I am not a willing participant. I am at ease with feeling breathless but this surely should not be something I am so closely acquainted with. I have my diagnoses, they are rare but they are chronic and nobody really has any answers for me. For years now, I have witnessed my perceptions of my illness change and fluctuate. Situations that would have once deeply unsettled but now the bar seems to be higher for that level of discomfort.

My attitude to risk is much more free, is it me that has changed or was I defining the wrong things to be risky all along? Treatments that were once prescriptive and recognisable to me, to my friends and family were probably quite risky but that was all okay because we had at least heard of the medication. We thought the risks might not apply to me because I would not need to take them on a long term basis, we were not armed with the knowledge of my future prognosis and were trying to fix the here and now. We were still safe in the misinformed naivety of thinking I had the same thing wrong with me as those wheezy kids on sports day. Now, we know that currently nothing exists that can fix me. My role as a patient has become more prominent in my overall identity and we start to think about the risk associated with new interventions. I have no choice in this anymore because I have to put my faith in the system to keep me safe. So I, willingly now, sit as a guinea pig and take it in. Risk becomes less risky when you are desperate.

I navigate hospital car parks, corridors and outpatient clinics so easily. I glide past those that are struggling to find ‘Outpatients C, Corridor 3, Second Floor, B Wing’ without really needing to think or take in my surroundings. I am a regular here, the hospital is so recognisable but no matter how much time I spend here, it still struggles to greet me like an old friend. Now it is more of an awkward but necessary interaction, like a meeting with a bank manager but with fewer cards on the table. Blood tests and admissions just do not seem to faze me anymore as I move through the process I have forcefully become accustomed to. Strangely, I observe, my hope has not been worn down. I still pin a lot of it on the team responsible for my care. I still wonder whether they will have something new for me and I still hope that it will all just go away. 

I know who and what I will encounter on my trips to the emergency department. The check in desk will struggle to collect my details as I gasp for breath but still they will ask me for my address, telephone number, next of kin and condition. The triage nurse will look ruffled but not too alarmed as they remain professional and compassionate. They will ask me to write down the name of my conditions, so obscure to them but so very normal to me. They will make some phone calls and leave the room for a while to try to find me a bed. They return and ask me to “sit somewhere I can see them” just so “they can keep an eye on me.” I am used to being monitored or reviewed with greater urgency as the winter months creep in. Back in A&E, I have a bed. Another nurse will take my observations and “the Doctor will not be long, we’ve told them to see you as soon as they can.” In the meantime, my blood will be taken without blinking an eyelid. Faces will appear behind the curtain, ask questions and look puzzled at my answers. There will be a warm “are you okay, love?” from the housekeeper or an offer of a cup of tea. I will try to respond but nobody understands what I am saying. Still I am not used to this. The first Doctor will appear, they look concerned and are busy ordering chest x-rays and more blood tests, along with “the one that might hurt…have you had it before?” I nod, tired now, but still at ease with this process. They leave, acknowledging that they need the respiratory doctor to see me. I wait, growing more uncomfortable with my symptoms but still too at home with the environment of bleeps, buzzes and smells that should not be something I recognise so easily. This journey will see me interact with limited levels of success to various doctors of increasing seniority with fewer answers. It is all part of a rhythm I can tap my feet to, part of a cycle that repeats year on year. 

My diagnoses have ultimately flipped my life and my perspectives upside down. I am aware that a lot of this is contradiction and in flux. I am a person that needs plans and answers, I crave progress. I question, I search for information to absorb and new insights to uncover. Breathlessness, wheezing, loss of voice and a chronic cough have exposed my body to scrutiny, to observation, to rigorous testing and judgement. Each medical interaction has, ashamedly, ground down my edges and dampened my quest for answers and change as I have had to succumb to the prognoses of my multiple chronic conditions. I am tired, anyone would be. This process is bumpy and treacherous but I hate that it seems to have become smooth sailing. Now I try to be a model patient in a bid to be taken more seriously as I know from experience that this process rewards compliance. Outwardly I try to appear smooth but in reality I am hardened to the effort that all of this takes. I do not want to lose the fire inside my belly but I am starting to wonder whether this friction I seem to create needs to lead in to acceptance and I need to achieve this without losing my hope. 

It’s a mixed bag | SICK ZINE

I was lucky enough to have a short submission to SICK ZINE accepted, see below for a scanned entry the full version of the entire zine will be available online shortly and I’ll post the link. This was part of a project led by Lara Plavčak during a zine residency at Fish Factory in Cornwall.

Brief below:

Going through any illness can be a solitary experience of feeling powerless and misunderstood by doctors, family, and society. Facing your limitations and establishing new perspectives can be as much of a stressful factor as coming to terms with your diagnosis. That is, if you are ‘lucky’ enough to get the right diagnosis. But we want to read your side of the story. We would like to hear your thoughts on illness, chronic illness, mental illness, injuries, and pain from your experience or the experience of someone close to you. Send in your written contributions of any literary or non-literary type (poems, short stories, diary entries, anecdotes, lists, advice columns, recipes etc.) by Thursday 25 July 5 pm. They can be funny, sad, informative, anything you feel comfortable writing, as long or as short as you want. The only requirement is to write something you would want to read on the given subject.

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It’s a mixed bag

A diagnosis can be bittersweet. Sometimes, it affirms what your body had already suspected. It validates your lived experience with an official stamp from a medical professional. It can be the culmination of a long, drawn out journey through dismissive doctors, incorrect diagnoses and life-changing symptoms that just won’t go away. You may have reached your diagnosis by chance, almost like someone has been playing a pinball machine and they’ve miraculously managed to make the right move. You may have waited a long time for it, but it could still come as a surprise. It may offer the recognition you’ve been waiting for, but it could also put you in to a tickbox that you don’t want to be in. It can turn you into a statistic but can also finally offer access to the support and medication you’ve been desperate for.

A diagnosis can be such a contradiction. It can bring clarity because sometimes there’s a plan. It can bring with it a flood of question marks too. Some questions might be answered, but others, those about the future and, just, you know, how if might affect your life…they can all loom over you and change in nature and importance. You may have complete faith in your medical team, but you could also feel as though you’re part of a lottery. A diagnosis is important but it doesn’t define you.

You might feel isolated and that’s okay. Sometimes this isolation can come from a place of being diagnosed with a rare condition – there’s a lack of recognition or existing knowledge base that can soothe you when you need to be reassured. You might feel like a guinea pig and waves of uncertainty may wash over you as you become the person in the TV programme, the magazine, the gossip. You are now ‘so and so with X condition.’ It might not be something that you’ve previously recognised in yourself but it’s okay, you are more than your diagnosis.

You’ll grieve for the past version of you, the one that wasn’t faced with the weight of a diagnosis but you’ll also grieve for future you. Will you be able to achieve the goals you had originally set out, can you travel as much as you had dreamed? Will it impact on your friendships and relationships? Your work? Will you constantly be comparing your body’s capabilities to those who are more able, or at least those who are more visibly care-free on social media? The answer is probably and again, that’s okay.

I’d like to reassure you though. Chronic illness can help clarify a lot of things. It offers a powerful and focused lens for you to figure out what is important. It helps iron out your values and really makes you appreciate the good stuff. I can assure you, that your ‘better’ days will feel truly exhilarating and you’ll never take advantage of them. You’ll get to find out just how much people care about you, a unique insight into how loved you are. You’ll form new friendships and discover support networks you never quite knew you needed. They are there. Social media accounts, articles, films, TV programmes and art, all created by an inclusive community you can be a part of. It won’t dictate, it won’t exclude or diminish but it will be there when you need it and even when you don’t.

Summer sunflowers

I really like sunflowers. Compared to most plants, I like to think sunflowers are pretty ambitious. They come out about once a year and are capable of growing up to 300cm – that’s nearly double my height. Aside from the thrill of cultivating some wild cress heads with my class mates in primary school, I can’t think of another plant that is naturally so fiercely competitive. Sunflowers can keep even the most hyperactive of 5 year olds occupied over the summer months with annual ‘sunflower growing competitions.’ They’re also pretty cheery to look at.

My love of sunflowers can be traced all the way back to the ’90s. It was so satisfying watching something tangible sprout up from a single seed poked in to a bit of compost, placed in a sunny spot and watered fairly hapharzadly. Always a fan of science, I measured my sunflower all the time and recorded its growth on a table, plotting graphs to find trends and recording how sunny my sunflower growing spot was. It taught me the basics of what plants need to survive and that when things are given the room to grow, they thrive.

Like a sunflower, my health improves during the summer months. Granted, I don’t grow any taller and burn pretty easily in the sun but I feel that real sense of sunflower ambition as things temporarily and gradually improve. The boost isn’t quite as quick for me as a successful germination but I find myself seeking out the ‘sun’ and growing (metaphorically) all the same.

When summer comes, I get a little bit of respite from some of my symptoms. They don’t all disappear but generally speaking, I have longer periods of time where I feel more ‘well.’ I really love feeling well and each year, I appreciate it even more. So many changes take place in my mind, I start to feel more like ‘me’ and I probably get a little carried away (much like a 3 metre tall sunflower).

My brain fizzes with ideas, it goes in to overdrive. Lethargy fades away and my insatiable enthusiasm for life comes back to the fore. I want to squeeze everything in, I have a sense of inpatience because I never quite know when I’ll feel poorly again. It feels so good! I want to take on new projects and challenges – I start setting myself wacky fitness goals – quick to do it all before it gets taken away from me again. My concentration becomes more powerful, my mind feels sharper and makes me want to read all the books and listen to all the podcasts and watch all the films. I become thirsty to develop myself and broaden my mind while I feel able to do so. I think of new activities to put my mind to, skills to learn. I start to feel close to invincible. I make it my priority to connect with friends and family I haven’t seen in a while. I cram my spare time full of plans all because I can. After months of not being as active as I’d like to be, I feel the constant need to be more productive. I push and push to soak up my surroundings and seek out the sun.

Obviously, all of this comes at a cost. My body can’t quite keep up with ambition. I’m trying to grow a prize-winning sunflower without giving it enough food, water, sunlight – instead I’m squeezing all I can from the compost around me while it’s there because I am so afraid it’ll be taken away from me. It feels so brilliant to be well, it’s the best kind of high! Naturally, it brings with it so many lows. When my health takes a hit during the summer months, I feel bitter. It’s not fair – I had so many plans! When I’m forced to retreat in to my seasonal cocoon and take stock, I miss how it feels to be growing and thriving. If I’m honest, I think I feel even more annoyed that water and sunlight alone are not anywhere near enough to keep me well. I still don’t have my magic ingredient to be a prize-winning sunflower but for now, I’ll definitely continue to enjoy the sun.

Mind the gap

In the same way our ‘shoulder bone is connected to the neck bone’ and our ‘neck bone is connected to the head bone,’ the physical symptoms of any condition are linked to our mental wellbeing. Our minds are connected to our bodies and physical health has huge ramifications on our emotional state and vice versa. There are so many ways to describe how we think and feel; our mood and sense of self fluctuates depending on so many factors. Nothing is constant about our bodies and we’re pretty much always in a state of flux. To account for this, we’re often asked by our friends, colleagues and clinicians to take a broad-brush approach to describing how we are – lumping together a mish-mash of emotions in to a coherent “fine thanks, how are you?” or “I’ve been struggling lately.” These statements don’t even scratch the surface of what life is like, particularly what life with a chronic condition entails and our thoughts and feelings, our mind, is often neglected in conversations relating to physical health especially in the clinic.

Like many, my interactions with health care professionals from my GP to hospital consultant and everyone in between are focused purely on the most problematic problem at that time. Clinic appointments are long-awaited and although valuable and appreciated, they’re only a snapshot in to life with a chronic condition. Respiratory physicians will focus on my lungs, naturally, that’s what they’re best at. Emergency doctors will be trying to stave off infection and help me to breathe, and of course that’s hugely important but I’ll also get other health care professionals focusing on my vocal cords, my airway and my cough. We’re often having heavyweight discussions, I’ve sometimes discovered new life-changing diagnoses (two in the last year) or I’m the recipient of a string of bad news – there’s no treatment/cure/plan [delete as appropriate]. All of this can be overwhelming, let’s face it, it’s never underwhelming but a common thread that runs through all of my appointments to date is that nobody asks about my emotional wellbeing.

Every single alteration to mind or body can affect both mind and body. A lot of the time, this is positive. Are you falling in love? Great! You might have a ‘glow’ about you or a ‘spring in your step.’ When you receive yet another diagnosis of a condition you struggle to spell (try: inducible laryngeal obstruction or tracheomalacia) it absolutely boggles your mind. It takes some time to digest, to comprehend what it all might actually mean and brains fizz with questions – some of which can’t be answered. The impact of all of this new information can do so many things, prompt a myriad of conflicting thoughts and yet still doesn’t take away from the physical impact of any health condition.

I am usually relieved to get a diagnosis, a verification of the fact that my symptoms weren’t actually in my head and “No, it’s not just asthma.” Often, I’ve lived with the challenges of the condition for a long time anyway so it’s kind of affirming. What I’m never really prepared for but still very appreciative of is the lack of sugar-coating. When I ask about how conditions may impact upon my actual life outside of the clinic, the answers are hard to swallow. Questions about my ability to continue to work are answered nonchalantly, those on my energy levels are answered factually according to their physical counterparts and those on the future are answered truthfully – with a massive question mark.

The repercussions of my consultations continue way beyond the clinic. I adjust as much as I can to my new normal. I listen to my body more but respectfully give it challenges. I work around physical limitations and try my best to adapt to uncertainty. I live as fully and completely as I can as I try to accept that sometimes, I just can’t do things, I try to continue positively in the spirit of things to carry on and not let my health define me. I am more than the sum total of my four chronic health conditions. I’m ambitious, I love my job, I’m proud to be a daughter, a partner, a sister and a friend. I love music, especially when it’s played live and I have an unquenchable thirst for facts and appreciation of learning. I also like coffee and writing. Some might agree that I have a reasonable sense of humour, I’m interested in places and people. I have a lot of life left to live, lots of experiences and challenges ahead. I’m nearly 30.

A lot of this can be forgotten in the clinic. Appreciating the growing pressures of our health service and limitations of time, money and expertise; I find myself treated less like an individual and more as a human embodiment of my condition. It’s not that staff lack care and compassion, they do – I have a brilliant team of experts around me. But, they are experts. Like any expert, they are ensconced in the intricacies of each condition and its clinical presentation. For them, it’s their everyday or at least they’re familiar with seeing it a lot. That can sometimes translate in to the fact that they see a particular patient group frequently. As a ‘nearly 30-year-old,’ the stark difference between me and the usual patient makeup is an age gap of at least 30 years. Generally speaking, this doesn’t bother me as we’re unified in our symptomatic experiences. We’re not, however, from the same generation or stage of life. We differ in ‘life lived’ and ‘life to live.’ My fellow patients have usually (but not always) been married, started families, travelled and retired.

Back to the consultation, this can completely change the dimension of conversations between patient and clinician. The doctor, used to interacting with patients of a different generation may not always appreciate the importance of work to quality of life, perhaps dismissing a question about jobs or social life for one about treatments, deemed to be more important by physical specialists. As patients we’re forever grateful of the work, commitment and breakthroughs from medical science but we’re still people above all else with lives to live and neck bones connected to our head bones.

Please keep that in mind.

Voice and identity

Pretty much everyone cringes when they hear recorded versions of their voice. It’s hugely different to how it sounds in your mind. My voice has always sounded ‘normal’ to me. It’s been steady and regular and it’s developed alongside my vocabulary and life experience. Speaking objectively, my voice is a little higher than average. It’s laced with northern undertones which places me within the community I grew up. Other than when I’ve been forced to do some public speaking, I take my voice for granted. It’s natural, it’s consistent and I don’t have to think about it. It’s almost a reflex, just like breathing.

Now, I consider myself as somebody who really likes science. I have huge respect for and trust in the scientific process. So much so that I studied towards a degree in Biomedical Science and took it further in to my career where I advocate for the communication and translation of science. There’s usually always a series of factors or logical processes I have been able to follow to make sense of the world. That being said, and despite all of my academic and professional endeavours – I just didn’t know that your vocal cords could stop you from breathing and that this in turn, could affect voice, my voice – my identity.

That being said, I am no stranger to respiratory issues, I was always one of those wheezy kids in school clutching on to a blue inhaler but as I got older the problems became more complex and harder to solve. The unpredictable nature of my breathing issues puzzled doctors and led me down a convoluted route to a diagnosis of tracheomalacia, essentially a floppy windpipe. As I wrapped my head around the prospect of having a condition that hasn’t passed the desk of many GPs and even specialists in chest medicine, my voice became more important than ever before.

It goes without saying, I use my voice to communicate – we all do. It’s how we tell people we’re happy or sad, it’s how we connect and form relationships, it’s how we express ourselves. We use it to let people know we’re scared, expressing frustrations and fears and our deep emotions. It’s how we order a coffee. It’s a form of currency and becomes a trademark, recognisable to those who interact with us. A voice can say a lot about you without you realising it. They say that a deeper tone of voice gives the air of authority and confidence, even assertion. A quiet voice can make you seem weak, awkward and lacking in conviction. No voice at all can mean you get overlooked.

I’m fortunate enough to have several slightly obscure and relatively unheard-of health conditions. They’re not your ‘run of the mill’ stuff but they all stop me from breathing properly and one, unpredictably, even damages my voice. Vocal cords are two bits of tissue that have muscles and membranes attached. They work because air that travels up from the airway makes them come together and vibrate, creating sound. We can shape sound using our teeth, tongue and jaw to give us our natural tones and expression but essentially, it’s tiny vibrations of our vocal cords about 200 times a second that gives us our voice. Mine ends up being compromised because of asthma, a floppy airway and laryngeal obstruction – right near the voice box.

I’ve said before, I can deal with being breathless and wheezy. The sensation isn’t pleasant by any means but it is familiar. What is harder to navigate is my voice. It occasionally just disappears halfway through a conversation, decides it won’t work when I wake up or will dramatically change in pitch. Some days my voice will sound high and squeaky with a colleague highlighting that it sounds as though “someone has let down a balloon inside your throat,” other days my voice morphs wildly in to that of a seasoned chain smoker. It’s completely unreliable and still shocks my family at the other end of the phone.

Besides being repeatedly offered Strepsils or experiencing sympathetic nods for my ‘sore throat,’ losing your voice is incredibly isolating. It has left me unable to express myself in meetings, unravelling my authority and diminishing my points for me. It’s let me down when I want to join in conversations with friends and scared countless strangers as I croak out words, too deep to recognise. It limits my ability to talk to my Grandma sometimes, she’s already hard of hearing and my voice won’t muster the power to be heard. It stops me from singing in the car. All of these things seem relatively trivial on their own but taken together, they stop me from expressing myself as fully as I’d like. I have to rest my voice, withdraw from cracking jokes and turn to text messaging over phone calls with friends. It affects my identity and sense of self and I’ll never again take my high-pitched, squeaky tones for granted.

Neighbours as a meditation tool

Yes, they may be fictional and 10,538 miles away from me but the residents of Ramsay Street are ‘good neighbours and good friends’ to me, just like the theme tune says.

I’m fully aware that it’s not cool at all to like Neighbours but I can’t stop watching it. Those 25 minutes of pure, slow-paced and gentle Aussie drama is exactly what I need to switch off. I watch it pretty much every week day and can feel my eyes glaze over as Karl and Susan get involved in yet another low-key neighbourhood kerfuffle. My muscles noticeably relax during another of Paul Robinson’s grand masterplans and my thoughts slow as a the story-line trudges towards Harold’s cafe with its familiar herbal teas and flat whites served in reusable cups.

The characters from the fictional suburb of Erinsborough (which would be just outside of Melbourne if it actually existed) have become familiar friends to me. They’ve offered me company during those long afternoons when I’m resigned to the sofa and they don’t even mind when I drop off to sleep because the storyline trundles along at such an easy, Sunday morning pace, I can easily catch up.

It’s not gripping stuff, my bum has never been on the edge of my seat during any episode although, granted, I did cry when Sonya died. It’s easy watching, just like those easy listening Spotify playlists we don’t admit to, it provides a visual stimulant that is interesting enough to distract my mind away from the worries of the day but boring enough to mean I don’t have to try to understand it. There’s nothing complex about Australia’s longest running soap, it’s really quite mundane but it’s familiar enough to be a little bit like a comfort blanket to me. It’s there even on UK Bank Holidays when I’m resting on the sofa and can hear people enjoying the sunshine outside. It’s there when I’m off work feeling rubbish and haven’t spoken to a single other person for hours. Toadie is a character that seems to go through bitter tragedy every other week but that doesn’t seem to raise my heartrate or occupy my thoughts, it’s the familiarity of the gentle BBQs and games of street cricket that keep me coming back for more.

Neighbours empties my mind, it frees up space, relaxes me and renders me sleepy sometimes but most of the time it keeps my head clear, calm and stable. So thanks to all my Aussie friends for being ‘good neighbours with a little understanding’ who have certainly helped me ‘find the perfect blend.’

P.S. Janet Street-Porter turned up unannounced in an episode the other day so don’t worrry, they’re still keeping it ‘fresh.’ 😉

House of cards

I think I’ve only ever tried to build a house of cards, or even a two storey small pyramid of cards when I’ve been somewhere pretty grey, dull, rainy and boring. At the moment, my health is boring me so I’m going to describe it as a shoddy pack of cards…no grand designs here!

At the moment, I have this list of things wrong with me – imagine them each as a layer of playing cards in the pyramid. I’m not sure which is the foundation yet because they all interact with each other and set each other off.

  1. Tracheomalacia – the floppy part at the top of my airway
  2. Inducible laryngeal obstruction (ILO) – the restriction of my airway at the top of my larynx/vocal cord area that causes breathlessness and my voice to go funny. My breathing patterns seem to also be disordered which is linked to ILO
  3. Asthma – some degree/severity of it that’s probably linked to allergies but it’s quite hard to tell how severe it is at the moment because of items 1 & 2
  4. Mannose-binding lectin (MBL) deficiency – affects the immune system and makes me more prone to infections, particularly those of the upper respiratory tract which is handily where all my other problems seem to be located

The four conditions above or ‘layers’ in the house of cards seem to all depend on one another and if one seems to be prodded and fall down, the rest of the house collapses and makes me unwell. It really does seem to be that flimsy.

When something triggers any of the first three items on the list, it causes symptoms which overlap and can be attributable to any and all of the above. It causes a tangled mess of breathlessness and coughing which also affects my speech. This makes it difficult to treat because it’s hard to unpick what has triggered an attack and therefore how to solve the problem. I’m currently in speech therapy for my ILO and we’re under no illusion that we need to get that under control before being able to even address some of the other issues. My consultant described it to me with this scenario:

“Imagine having a leak in your bathroom that needs to be fixed and hiring a plumber but the plumber is unable to even access your house because the front door is also broken. The front door needs to be fixed first before the plumber can even begin to deal with the problem in the bathroom.”

I guess it’s a case of being a patient patient and trying to fix and/or strengthen the foundations before we can build any impressive house of cards. It’s going to take some time and meanwhile, I’ll try my best to stay away from any gusts of wind that can knock my unstable card structure over!