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Pain & Joy

This is the face of someone who has just been discharged from hospital and narrowly avoided an operation. This is the face of someone who is loved and cared for by a lot of incredible friends. This is also the face of someone dealing with incurable excruciating pain without painkillers, it is the face of someone who misses their mum, it is the face of someone who is so close to being done.

Pain exists at the same time as joy. There is never one without the other. They sit side by side and sometimes they coincide and on difficult days they collide.

This is my face, and I find it remarkable how many marks it is missing, considering all those collisions.

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Public Transport Excludes 18% of The Public

The thing you need to understand about ambulatory wheelchair users: a wheelchair is not an escape. It does not fix the pain.

We don’t notice how uneven the pavement is, how high curbs are, how narrow so many doorways are, no we really don’t notice half of our surroundings until we try to navigate the world in a wheelchair. We don’t realise that so much of the so-called access we have is not designed by disabled people, but is the bare minimum in imagining what a disabled person might need by able bodied people. 

If you have any form of disability, are neurodivergent, or have sensory issues, you will know what a nightmare being in public spaces is, let alone public transport. With this in mind, for my latest hospital appointment in London my mother and I decided to get hospital transport so I could lie down. Ambulances, ironically, do not feel safe. In the UK lots of them are converted vans, and they are very painful to travel in as they lack suspension. So, unfortunately that did not solve the issues I face when travelling. 

In the hopes of a less stressful journey back, my brother booked us a first class train ticket, only £10 more expensive, but that way I had more hope of being able to lie down and it would be a shorter journey. At the train station we asked the first attendant we saw about a ramp, how to get on board, this is our ticket, she replied with the platform the train would be pulling into and that was it. The second person we spoke to was slightly more helpful, telling us to ask a guard. When we got to the platform and asked the guard, he put down a ramp for us, and the first time the entire trip I felt like something was going right, until we got on board the train and my wheelchair couldn’t fit between the seats to get to the first class compartment where I could lie down. As soon as we asked the guard for help he shrugged and practically ran away whilst saying ‘this is the only compartment I can put the ramp down’. No offer to carry a bag or help carry the wheelchair to the next carriage.

I am an ambulatory wheelchair user, which means I can sometimes walk. At the moment I can only just stand my pain is so excruciating. Leaning on the seats so that my mother could fold up the wheelchair I was shouting to deal with the pain and frustration. How unfair. How ridiculous. Why isn’t the world built for me?! Why is every minute another challenge in every possible way? Even folded up, the wheelchair was too big to fit through the aisle, so, exhausted, after wandering the station to find help, and travelling across London, as well as a torturous hospital appointment, we had to shove it down the aisle of one carriage, and then another, until we finally ended up in the right carriage. Whilst, yes you could argue that the ‘accessible’ seating where I could have just sat in my wheelchair and not travelled to the carriage we had paid for, is what I should have done, what does that say about our view of disabled people? That they don’t deserve to use first class? That they’re not welcome there?

I had been sitting up all day with awful pain, and the is the thing you need to understand about pain and ambulatory wheelchair users: a wheelchair is not an escape. It does not fix the pain. It does not help enough. It simply means I don’t have to walk as much so I can sometimes prevent more symptoms. I can’t even push myself. Being wheeled over cobblestones and grids and being tilted up curbs? It is just as exhausting as walking. After those two days in an unfamiliar environment with rigorous hospital testing, I needed to lie down.

When we arrived at our stop, the guard came and lifted the wheelchair out whilst Mum helped me, and she said on the way out of the station that he had redeemed himself. Yes, I agreed, and then thought about it. No. No he did not redeem himself by doing the bare minimum. That did not make up for his rudeness or lack of concern. And though he may not be responsible, there is no making up for the fact that public transport excludes 18% of the public’s population. 

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Include Asians in your Anti-Racism

As a disabled writer, woman, and human being, intersectionality is incredibly important to me. We need to dismantle all systems of oppression, not just one, because they are all interconnected. That’s why I want to talk about the rise in hate crimes against the Asian community right now.

I benefit from Asian cultures in many ways. Whether it is food, films, kpop, products, manga, fashion anime, healthcare, we all benefit from these communities’ work and history.

I eat sushi, dumplings, pho and kimchi. I have Asian family members and friends.
I love Studio Ghibli.
I hope to travel to Japan, Korea, China, Vietnam, Thailand and more Asian countries one day.

But even if none of this were true, the simple facts are that hate crimes in the Asian community have been rising exponentially, that the representation, particularly of Asian women in the media, is extremely damaging, that these communities have been targeted and blamed and attacked because of ignorance and racism.

You shouldn’t need to benefit from a community to care, you shouldn’t need to have a friend or a family member suffering to speak out, the fact that you are human should be enough to stand up for what is right. I am sick of activism only working as a trend, acting like we only have a small window for change. No. Speak about the issues you care about, always. Not just when it’s a hashtag. NOBODY should have to be scared to go outside.

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Chronic Pain Management

Mangement Strategies? Tips? Help?! For what? Strategies for how to explain to people that I can’t do today what I did yesterday? Tips for keeping calm when a doctor offers to chop off your leg (yes that actually happened) Help for not crying all the time over how much pain you’re in?! MANAGEMENT STRATEGIES?! What do you mean?! There is not one single strategy let alone plural that can manage all these terrible, difficult situations- oh wait. Yes there is.
Breathing.

The only management strategy for anything in life is working on the foundation that sustains us, our breath. It is also the only thing that gives me a chance to get on top of my pain. For the first five years, pre-diagnosis, I had no idea about breath work. Truth be told, I’ve only really become properly good at it since starting yoga this year. It’s a complete game changer. Our natural response when we are put in pain is to tense up, to freeze, but this does the opposite of what we want, rather than stopping the pain it makes it worse. Particularly for EDS, if I can feel a joint sublux, my reaction is what makes the difference between it being out of place several hours or several months. If I can focus on my breathing and relax the joint, I give it a better chance of shifting back in. If I tense up, it is more likely to get stuck and swollen. Equally, if I am to have any hope of not losing my temper in a doctor’s office, I need to rely on my calming breaths. If you have no idea what I’m on about or are curious and want to know more about breathing- do you know how to breathe, really? Do you?- listen to ‘Tranquili-tea’.

Management strategies for POTs and seizures include sprinkling salt on my tongue. It’s a blood pressure thing, I think?

A flare up is a term for chronic pain/ongoing symptoms becoming worse: flaring. My flare ups can look like me being silent (very unusual for me as I’m sure you can imagine!) because I’m so exhausted or not being able to move due to pain (but mentally I’m okay just frustrated-feeling-trapped-with-a-brain-that-wants-to-do-things-my-body-can’t!
On my worst days, it’s both.

Flare ups can be caused by me moving too quickly and subluxing something, or not moving at all and still subluxing something, or subluxing something by moving slightly! I sublux at least twice a day, if you’re not sure what subluxation is, it’s essentially a half dislocation, a joint moves out of place but not enough that you can slide it back in- instead it gets stuck and then swells up so it can’t move back! It’s excruciating! It can last from ten seconds to six weeks, sometimes even longer and it’s pretty annoying and agonising! Aside from subluxations, standing for too long, walking too quickly or for too long a distance, climbing stairs, a seizure, doing too much exercise, doing too little, going to a party for too long or going to a shop where the lighting is too bright- all these can cause a flare up. The one thing that is certain to cause a flare up? Periods. Due to higher levels of progesterone being released, joints become even more lax and thus prone to subluxation.

What does a flare up look like for me, you ask? It looks like nothing.

It looks like any healthy 19 year old girl. Because Ehlers Danlos Syndrome is invisible.

The one tool I wish I was better at using is kindness. Reminding myself I’m on a flare up and that I shouldn’t beat myself up for not doing enough. I usually forget this. My hip will sublux one day and at the end of that week I will think ‘My goodness! Look at how messy your room is! What on earth is wrong with you how lazy can you get-!’ and then, if I am sensible enough to tell them how I’m feeling, my mother or boyfriend or brother will remind me ‘Hey you spent the week in bed in tremendous pain- chill out!!’

Now you might be thinking ‘How can your room get so untidy if you have spent the week in bed, Blossom?’ Well, friend, it’s a skill, and I can’t let you in on all my secrets.

So, the tool I wish I would use more often in a flare up is kindness. If this resonates with you- struggling to be nice to yourself, having high expectations and standards, etc- I’d like to take this opportunity to recommend one of my favourite podcast episodes Relativi-tea I hope it’s helpful.

MY TOOL BOX
– Ice/heat packs
– @Lush Wiccy Magic Muscles Massage Bar (for headaches and muscle pain)
– Magnesium Salt Bath
– Body Pillows
– Comfort Food (hence the lemon meringue pie which I definitely am entirely allergic to but I like the photo, it goes with my theme, and it would be my favourite dessert hehe)
– Cuddles with pets/people
– Distractions

Feel Good TV: FRIENDS, Avatar the Last Airbender

Feel Good Movies: Any Rom-com- I recommend Easy A and Crazy, Stupid, Love. A Studio Ghibli Film, my favourite is Whisper of the Heart. A good Pixar like Ratatouille or Soul
– A good playlist of boppy songs with relatable lyrics
– Gentle, modified, slow Yoga with Adriene on Youtube
– (No caffeine) Tea!!!

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10 FREE Gift Ideas for Christmas 2020

I have put together a list of 10 FREE & eco-friendly gift ideas for Christmas 2020- and beyond! Whether you need a last minute Christmas gift, are sticking to a budget, or want some thoughtful gift ideas that require zero craft skills- because every free gift idea seems to be ‘Crochet them a succulent holder with the expensive wool you already have lying around!’- you’re in the right place. There are many reasons you need free gift ideas, but the best one is that they are the most sustainable because they require no shipping, labour, or toxic materials! Personally, I have been shielding since March and getting out to go Christmas shopping is out of the question. We have all struggled with work, whether in finding, doing, or losing jobs, and avoiding amazon can be difficult when so many small shops around us have closed. So, how can we show our loved ones we care about them without spending money? Well, this year, I think we all appreciate time and effort more than anything that can be bought. It is truly the thought that counts. That is why the only thing these gifts will cost you is your time! 

10 Free & Eco-Friendly Gift Ideas

  1. Recommend them some YouTube Channels you think they would enjoy! Some of my favourite YouTubers are…
    • Yoga with Adriene for someone who wants to find more balance within themselves and exercise from home
    • Crash Course or Kurzgesagt for someone who loves learning new things
    • Pick Up Limes for someone who is interested in nutritious vegan food but is struggling to find delicious recipes
    • Lavendaire for lifestyle and organisation
  2. Give them a book list you think they would like with quotes from the books that are personal to your relationship. You could even hand write some of the quotes to make it extra thoughtful!
  3. Create a collage of memories together, quotes that either of you have said or wise words from their favourite celebrity, pretty pictures of flowers and cute baby animals, something they can look at and immediately be cheered up. Apps like picCollage can help you out, but this gift could be made physical by using magazine cuttings, though digital is probably easiest to send right now!
  4. Choose some songs to put together a playlist just for them. You could even copy the lyrics that you think they will like in their Christmas card! Songs I’m loving right now are:
  5. Email your local radio to give them a shoutout, you could ask them to tell the person how grateful you are for them, or write another sweet message.
  6. Design some recipes for them, that you could either make together, or that you know they would enjoy learning to cook. 
  7. Edit together some videos and/or photos of your favourite memories to make them smile. This montage could also include pictures of places where you want to go on holiday if you don’t have many of the two of you together (or only made friends during lockdown, for instance!)  
  8. Write a set of vouchers for things you want to do together/ things you can offer- a walk outside, to bake cookies for them, perhaps if it is for a sibling you could promise to tidy their room, or promise a parent to do the cooking every day for a week!
  9. Personalise a watchlist for them! We all know how frustrating it is to spend more time browsing Netflix than actually enjoying what we watch! Choose 5 Movies and TV shows that you know they haven’t seen, and to make it even more personal you could write a synopsis for each of them that the has inside jokes or why you think they’d like it. Two Netflix shows I am liking right now are:
    • Gilmore Girls! What’s Autumn without rewatching at least one episode- let’s be real- all seven seasons?!
    • Dash & Lily A sweet and soft watch- think Hallmark Christmas Movie as a TV show- what more do you want?!
  10. Pick some flowers if you are lucky enough to have some growing near you! You can dry them and stick them to some card for a bookmark or add it to potpourri and divide it into bags to make a batch of presents for all your loved ones.

I hope one or more of these ideas has inspired you! In the Christmas Spirit (and as a thank you for reading this whole blog!) A BONUS gift idea could be compiling a list of your favourite podcasts! As long as Tea with HB is at the top of course… 🙂

Relax your jaw, straighten your spine, take a deep breath… and you’re ready to put so much love and thought into these gifts that the recipient won’t even think about the price tag!

Love, HB x

P.S I have nothing against crochet, and if you’d like to make my mini Cactus Eric a wooly holder for the Winter months, we’d both be so pleased.

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Green Gift Guide Christmas 2020

Welcome to an Eco-friendly Christmas Gift Guide, so you can support small businesses and the environment. From vegan body care, to an eco-friendly yoga mat, give your loved ones ethical gifts for a conscious Christmas this year! Sustainability is something close to my heart, which is why I am working on a series to make it a more accessible and inclusive topic in the new year. To be the first to see this project & others, you can sign up to my Patreon. When you support a small business, you are actively supporting creatives, individuals who work hard on their passions, and their families, which is more important than ever this year. I find that giving always feels better than receiving and the best gift is !

So, without further ado, here are 6 sustainable businesses to support this Christmas, including Tea with HB!

Tea with HB Green Gift Guide Christmas 2020

  1. For the games lover, a digital gift can be the perfect way to reunite with family & friends this Christmas. Stir Crazy is a virtual pack of cards, available on Google Play and the App Store. One person pays once, and up to 7 other people can join online for free. Just like playing Among Us, you join with a code.
  2. I have designed my own tote-ally sustainable Tea with HB Tote Bag, just for you! So, you can share the podcast with a friend, use it as a wrapping paper alternative, and contribute to cutting down single-use plastic by gifting a reusable bag! You can get your own Festivi-tea Tote Bag here or gift a friend!
  3. Looking for a family run, small, sustainable business to support whilst introducing your family and friends to the joy of yoga? Complete Unity Yoga sells Equipment for Yoga & Meditation I have one of their eco-friendly yoga mats and I use it every day! I have already bought two more for Christmas presents, they are simply magical. Meditation Cushions and other goodies are also available! You can listen to the podcast episode Uni-tea I recorded with Malene, the founder of this company, to learn more about it.
  4. Greeting cards, prints, canvases, accessories, and apparel? Canadian based David Hayward aka the Naked Pastor has all kinds of gifts available to order for your nearest & dearest. You can listen to our podcast episode Spirituali-tea here to learn more about him and his art!
  5. I have just discovered The School of Life, a company that offers affordable gifts like Stationery & Books to larger gifts like their Courses teaching life skills. I have ordered a few things from them as Christmas gifts (and for myself!) and am so impressed with the quality and care that goes into their products!
  6. For a luxurious, guilt free pampering, you have to love LUSH Cosmetics I am sure most of you have heard of Lush, but if you haven’t, let me introduce you! Fresh, handmade, based in the UK and specialising in vegan body care, from bath bombs and bubble bath, to hair care and toothpaste! So many of their products are packaging free and this company brings me so much pure JOY, I browse their website for fun even when I am not buying. I hope I get to work there one day because I admire what they do so much. 

If you don’t have money to be able to spend on gifts this year, I have also put together 10 Gift Ideas that are Completely FREE! These are, of course, the most eco friendly, as they don’t even require shipping, check back here on Friday to read all about them!

P.S If you are interested in learning more about How to have an ethical Christmas, check out this blog by Good Housekeeping!

Love, HB x

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Fear is just Faith you can’t see

This Blog post was inspired by the song ‘Greater than I’ by Kate Walsh. Listen here!

I have been thinking a lot about fear recently. This year has been terrifying. However, all emotions and thoughts have a positive origin because the first priority of our brain is to protect us. This might seem controversial at first but fear is a great example of this. Though we experience it as a negative feeling, fear is actually there to encourage us to be careful, to survive.

Next time you have what you perceive to be a ‘negative thought’, see if you can track it back to its original purpose, see if you can see the other, positive side to it. Try to thank it for protecting you. An example of this for me was telling myself that I was faking my pain. When my symptoms first developed, I had no idea what was going on and nor did anybody else. I was a ten year old being questioned constantly about why I couldn’t do things, by teachers, classmates, family members and even strangers. I was (and still am) in constant pain, struggling to walk, and at the time had little to no understanding of what was happening to me. The thought pattern of ‘it’s not real, I am faking it’ not only enabled me to feel a sense of control over my deteriorating health, but also helped me to push myself to attend school as much as I could (which… wasn’t a lot). The point is, it helped me survive. Even though it is clearly an unhealthy internal monologue, its original purpose was to protect me, and, though I didn’t realise it then, it was successful.

Nevertheless, these negative thoughts haunted me from the ages of 11 to 19, even though they were no longer serving me, my brain was following the groove of a thought pattern that had worked previously. It was only this year, through therapy, when I was able to stop viewing the thoughts as attacks. Instead, I can see them for what they were and are, the only defence mechanisms I knew as a child. I was able to forgive myself for not knowing what to do. Now, I don’t experience the massive internal conflict I had because I realised there was no conflict. All my thoughts have the same intention: to help me survive.

I am now able to understand why my instinct was to blame myself, because nobody else was to blame. The thing is, I wasn’t either. But I can appreciate and actually be grateful that my brain gave me a way out when I had none, no matter how warped it may seem.

Fear. It can be irrational, scary, all encompassing, crippling. But what if we flip the narrative? What if fear is just faith you can’t see? Faith, in yourself, and your ability to survive.

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Society is Dependent on…

Sir Ken Robinson died on 21st of August 2020 and he was one of my first ever heroes… I wanted to share this quote with you in the hopes that you will redefine your definitions of ability and intelligence.

Human communities depend upon a diversity of talent, not a singular conception of ability. And at the heart of the challenge is to reconstitute our sense of ability and intelligence.

Sir Ken Robinson

I want to address something I hear & read about a lot: that disabled people are disposable. Worth less. To say that disabled people are a ‘drain on society’ or resources or taxpayers or whatever else is to say that the success of society is measured by money. In actual fact, the word ‘society’ comes from the Latin socius (companion) and was first found in English in the mid-16th century meaning ‘companionship, friendly association with others.’ Society is thus defined by relationships. Just as everything in life is, really. A plant’s relationship with the sun is essential for its survival. Our relationships with each other is vital for our own wellbeing, as lockdown has taught us all too well.

Therefore, not only is this idea that disabled people are less productive, less capable or less worthy fundamentally untrue, it would also mean that every single one of us is a drain on society. Is a pregnant woman on maternity leave a drain on society because she has stopped working? Absolutely not. What about those who are battling cancer or depression? Both disabling illnesses but not the people you would immediately consider when you hear the term ‘disabled people’. Our capability to love makes us all inherently valuable. Worth is not something you earn or something that can be taken away. We, as disabled people, are no more a drain than anybody else. Given the right access and accommodation, given a society that did not disable us- the empathy, work ethic and fire we possess from being oppressed is one of the most valuable resources on earth!

We are society, so whatever we don’t like about it, we have the power to change. Diversity. Society depends upon us.

This blog post originated from a newsletter I sent out to the Communi-tea a few weeks ago, if you’d like to be the first to hear updates, or want some book, song, & film recommendations gracing your inbox each week, you can sign up here!

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The Gap Between Two Healthcare Worlds

Dominique Viel, founder of InvisiYouth, shares her story with us today!

‘When people find out I launched InvisiYouth Charity five years ago when I was 22, the follow-up questions tend to all fall into the categories of “How did you come up with a nonprofit supporting young adult chronic illness lifestyle?” or “You’re so young to run a nonprofit, how do you manage it?” or even “What makes young adult healthcare so different from pediatrics and adults?” If you look at it, the main theme stemming through all the questions around my philanthropy is a lack of understanding the young adult experience and what makes it one of the most vital times for an individual to be supported. 

I was a teenage competitive tennis player with a laser focus on the life I wanted to live, but one injury resulted into years without proper diagnosis and complicated treatments as my chronic illnesses began to take center stage. I’m lucky I have a supportive family that stood by my side through all the horribly challenging times, like my mom being at every doctor’s appointment. “This is your health and your body, Dominique,” my mom would say. “No matter how old you are, you have to remember you are the patient and deserve to be as active of a participant in your healthcare as you can.” 

It was her encouragement to always ask those “why” questions to our doctors when I didn’t understand or didn’t agree with a treatment plan that mattered the most as I began transitioning from pediatric to adult healthcare. When you’re in that 13-35 age demographic dealing with health struggles, you fall into the gap between these two healthcare worlds. You’re not dependent on others to make choices for yourself, but you shouldn’t be thrown into the deep-end of your treatment programs. You’re in the most critical time of your life, cultivating what matters to you, establishing your voice, and building your future life…but there’s no healthcare to specifically support you.  

That fear of being invisible in my own healthcare journey fueled my passion to build InvisiYouth Charity, a global nonprofit helping teens and young adults with chronic illness or disability (physical AND mental) to have the right lifestyle tools, virtual resources, leadership programs and empowerment to thrive with any health struggles. You’re never ‘invisible’ with InvisiYouth, but rather ‘invincible’ because this population has the best skills to adapt, conquer, and excel. It is my goal that every young adult has tools to know they are represented, validated and supported on their unique health journey.

My chronic illnesses have become my life’s teammates and no longer the enemy taking value away. I will always crave gaining knowledge and sparks of joy from my life and work. I wake up and go to sleep as a person with a purpose that happens to also have chronic illnesses. Each day I work to pursue my goals, make InvisiYouth better, and always give back so others can feel just as knowledgeable to thrive in their daily lives like I do.’

You can find more about this charity on their website or @InvisiYouth on Instagram.

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My Diagnosis…

Pain, spots and loss of energy were the main symptoms that rapidly deteriorated my mobility and quality of life at age 10. The symptoms that didn’t add up, that confused every doctor at my surgery- and countless specialists in numerous hospitals afterwards.

5 years after my symptoms first flared I was finally diagnosed with Ehlers-Danlos Syndrome, a chronic illness which explains the constant pain I am still coping with today. There is a defect in my collagen, the tissues that make up our bodies. But a diagnosis shouldn’t be necessary for a child in pain to be taken seriously. A few latin words or the name of some doctor shouldn’t be a reason to believe somebody, no matter what age or how they look. Everyone deserves to be believed. I was misdiagnosed many times and thousands of people out there are still searching.

I was ‘lucky’ to be given a diagnosis. Several, in fact. Chronic Fatigue, Dyspraxia, Anxiety, POTs, FND and more had been added to my list by the age of 18. But these are just words, meaningless labels. I don’t want to live my life inside boxes, I don’t want to be defined by my health, I only want to be myself. Perhaps it would be different if a diagnosis meant I could be given help but I was told there is no treatment.

Diagnoses mean nothing in a health care system that assigns specific doctors for each symptom who don’t confer with each other! And you’re ‘lucky’ to be given diagnoses, to get an appointment at all, let alone one that actually helps relieve a symptom! They told me there is no treatment when in reality they just don’t know how to treat the body as a whole. Medication is not and should not be the only solution. For many it is not a solution at all. It is not a chronic/rare disease only issue. A broken leg can affect your mental health. Nutrition can help acne. Everything is connected!

There are SO MANY treatments. Diets, vitamins & supplements, fixing your sleep routine and finding an exercise regime that suits you. Surrounding yourself with friends and family who understand, learning to pace, learning your limits, learning to be kind to yourself. There is so much hope that was not given to me when I needed it.

So, this is what I want Tea with HB to be. A place where hope can be discovered. A place to question and to learn. A place to share information that we weren’t taught in school. Most importantly, a new reality. A place to just be. Listen to the birdsong, sip some tea and breathe.

If you have a story you’d like to share in the comments, I would love to read it.