This weekend was one of the most moving weekends of work I have experienced in the 3 years since I set up my business… but first, a little background…
I have been very lucky to work with the charity Alopecia UK – working to improve the lives of those affected by Alopecia – since the early summer of 2017 when my search for my first henna crown model lead me to meet with the AUK Charity Development manager, Jen Chambers. You can see how that unfolded in the blog post from her photoshoot here.
From that experience, I was then invited to be the henna crown provider at their 2017 national Alopecia Awareness Big Weekend event – in Birmingham. Unsure of what to expect, I was mostly emotionally invested in the logistics of how to set up to provide a thoughtful, respectful and empathetic service. Luckily, the official photographer for the same event was my good friend and familiar business collaborator, Louise Rayner. The weekend was a beautiful experience and you can read all about that in the subsequent blog post here.
Fast forward 2 years, AUK returned to me via an events management company who brought me in again as the official henna artist for the 2019 Big Weekend. The previous format I had used proved successful and well-received, and it seemed to me that I knew what to expect and how to prepare my setup – with the only significant difference being that the 2019 event was to be held a hefty 4-hour drive away in Bristol. Oh, and also the small matter of having a second event to attend on the Sunday of the same weekend. I estimated that although it would be a tight timeline, I should be able to make it to the Sunday booking, a wellbeing festival, and be able to indulge in a shoulder massage to recover (perhaps I was a little optimistic).
With this in mind I set off early on Friday, collecting my BBC henna crown buddy, Emily en route. I put the Disney playlist on and we were on our way, singing along, having impassioned feminist rants while the skies burst forth with biblical rain (no joke, we were travelling at 30 mph on the M5, windscreen wipers on the highest speed and visibility was still severely limited – an ark probably would have been more effective). We managed to arrive with plenty of time to spare and while I set Emily loose to explore on her own terms, I set up my station between Eylure and Ciara’s headscarves. My henna crown station was tucked in the back corner of a shared exhibitors room – which meant that the henna crown experience would be open to spectators.
I like to potter when I setup. And I tend to find that with each step of the way I become distracted by something else that I want to attend to, so I end up trying to do multiple things at the same time (word to the wise – this is a very messy and disorganised approach). On this occasion, I was really hating my backdrop. I use a photography backdrop and hang fabric from it to create some ambiance in my exhibition spaces. Usually it works without issue. In Bristol it fell over a number of times, the fabrics just wouldn’t drape nicely and it even broke! But it was too late to take it down, so it remained, held together with a significant length of tape. I decided that if I hated it, I would take it down on the second day.
There is always an element of anxiety for big events like this, but we exhibitors can sometimes forget that it’s nerve-wracking for the attendees too. My first crown was late. I panicked, but also she panicked. It was a simple misunderstanding and in the end we only lost 25 mins, but she was flustered and overwhelmed immediately. She gradually calmed as we worked on her henna crown… That is until the final moment when she was able to see her crown…
So here’s the thing. I often describe how my role as your henna artist affords me the privilege of meeting you under special circumstances. I know all my henna crown clients without hair, a wig, or any type of head covering. When I see you again with your head covered, I will struggle to recognise you. For me, when you appear in front of me with your scalp, I am simply overjoyed to have the opportunity to create my art on your beautiful canvas. I would not change any part of you for me to be able to work with you. On the flipside, my henna crown clients usually come to me when they have reached a level of acceptance of their life with Alopecia. Very often, booking a henna crown is the beginning of the final step towards self-acceptance, a celebratory landmark in personal development. So I always take photos of the completed henna crown from various angles to allow people to see their crowns without hindrance (mirrors just don’t cut it). The reactions are always incredible and inspiring – and the first crown for the AUK Big Weekend was no exception. Emotional and complex, it is difficult to explain the significance of seeing yourself in a way you have never seen yourself before. It may even be the first time you have been able to see the actual back of your head – because let’s be real, who looks at the back of their own head? When I show you your henna crown, you are seeing your scalp through my eyes, with a design that looks like it was always there, waiting to be revealed. If this view doesn’t align with how you are used to seeing yourself, it can be slightly overwhelming – but it isn’t a bad thing. It’s just new, to you. And that is how my weekend of henna crowns with AUK began.
The other fantastic aspect of my role as your henna artist is the conversation. I have learned so much from you, your lives, your experiences and the knowledge you share with me. From the journey of how you experience Alopecia, to how to parent teenagers (there is no definitive answer here), to re-entering the dating scene with Alopecia, and to the unexpected compromises made in becoming a full time carer when dementia affects a loved one. These conversations enrich my experience and empathy as your artist (and as a human).
Amidst all this I met my first Alopecian who had never been in public without her wig, who had the intention of pushing herself out of her comfort zone and had ambitiously booked a full crown session to take the huge step towards her end goal of self acceptance (if you know me, you’ll know that this was a lady after my own heart). Unbeknownst to me, she had arrived to her first ever Alopecia UK support event – the biggest one they organise throughout the year – and was, to put it mildly, utterly overwhelmed with everything she was experiencing. When you have lived with something for most of your life, beginning from childhood, you become highly skilled in the coping mechanisms that you have developed. If you’re lucky to find external sources of support, you will learn new coping strategies and glean advice from others’ experiences. But in many cases Alopecians are surprised to learn about the support system that Alopecia UK has built. Stepping into the fold of the AUK support is like walking into a beautiful welcoming hug. Some Alopecians take small measured steps into this hug, starting with lurking in the online support groups, before progressing to attending a small, local meet up. The more outgoing and gregarious personalities may just jump straight in at the deep end and attend one of the larger annual events after announcing their appearance in the online group. Either way, finding such amazing support can throw your current coping methods into a sharp and glaring contrast, forcing you to assess internalised mindsets that you maybe didn’t even know you had.
You see, that’s the thing with Alopecia, like anxiety: It does not discriminate who it may strike. Sure, there may be the odd genetic indication it could affect you, but it varies across a spectrum. So we had a gentle talk to ensure that we agreed that we would be achieving a henna crown that day, then we moved my [previously very much loathed] backdrop forwards to act as a privacy screen before I took a step away to allow her to garner the strength and energy to remove her wig. (I was so relieved to have the backdrop and firmly believe she was the reason I had persisted with it against my personal feelings.)
Incidentally, if you were curious to know how my Sunday event went after my 4 hour drive in neverending rain on the Saturday night – I had to admit defeat and make the extremely difficult decision of cancelling. I was mentally and emotionally exhausted. I was definitely overly optimistic.
Now, as I sit here journalling those two days, my ultimate and long lasting take away is that the effects of Alopecia UK’s work are incredibly far reaching: Far beyond appearance management; Far beyond recommendations for wig suppliers, wig styling, headscarves, hats, lash and eyebrow make-up and semi-permanent make-up; Far beyond their most up to date medical research and treatments for cures. What makes Alopecia UK so special is the gentle human approach towards self acceptance, no matter where you are in your journey with Alopecia, or your age, or your background. The support they have nurtured is indiscriminate and empowering. and has had a powerfully positive effect on generations of Alopecians and their loved ones.
If you or anyone you know is affected by Alopecia, I highly recommend making use of their wonderful services. You can contact the fantastic team via the website, email or call them on their phone number. They also have a Facebook page and an associated, brilliant closed group for online community support. If you would like to help to support their work you can also volunteer, shop, add your voice to the fairer wig provision campaign, donate or fundraise.
And finally to bring a close to this emotional blog entry I would like to share this wonderful, award winning short documentary ‘Shedding‘ made by Alopecia UK. Please grab yourself a cuppa, get comfy and take 10 minutes of your day to watch.