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7 things I learnt when someone dies.. 

Cheery title I know, and perhaps I wouldn’t read on if you’re wanting a joyful, fun blog post.

I’m feeling melancholy after I watched ‘Holding The Man’ last night, a wonderful story of true true love. A story punctuated by HIV, resulting in death. It rushed me back to hospital wards, the rooms to one side where you’re put when they know the inevitable is not far away. It also made me reflect and realise some things..
Grief. Loss. Bereavement. Someone dying. Dead. Passed away. Passed on – whatever the f that means. All such strange words that get thrown around when its on the horizon or when it happens. When you’re told to go have a sugary tea. Like that’ll make everything ok. Seriously?

When I was a child my paternal grandfather died after being ravaged by the f-cking ‘C’. My memories are of his decline and then pointing out a person shaped cloud from the back of the car as we left his funeral. I thought it was a cloud ‘Grandad’ lying on a cloud being taken off to heaven.

My paternal family have in particular been significantly devastated by the big C. Two uncles in swift, yet such cruel ways; C reducing towers of men to carcasses, there’s no other way of putting it. Barbaric, cruel deaths.

By contrast, B looked like a prime athlete having a sleep. In the couple of hours leading to when B died, I remember the ‘room’ we were moved to was huge. He looked almost insignificant laid in the bed in the middle of the room. A nurses station at the back behind glass. The sounds of the god damn machines, their shrill noises sounding, deafening alarms of what we all knew was happening. That noise of heart monitors, in a hospital, on TV, wherever, takes me right back there, even if just for a split second every single time.

His death was so very sudden, yet ultimately, bar the machines, I remember it being peaceful. I think I’ve chosen to selectively remember it this way, instead of dwelling on the reality of the ‘death rattle’ chest sounds, and his heart beating so hard swelling up between his ribs until it couldn’t beat anymore.

There are some things though that I wish ‘someone’ had told me..

1. It’s a trauma

Get counselling if you can. However it happens, you will need to talk it through at some point. Death. Grief. Loss. They’re all traumas. Don’t bottle the words up. If you can’t say them, write them down. And that’s no 2.
2. Write it down

Your head will be a mess. Write everything down – stuff the nurses said, things the funeral director asked/tells you to do, what BT need to change account names and who you spoke to. Write down stuff you want to remember about them – you’ll think you’re forgetting them when you can’t remember. Favourite places, jokes, aftershave, pudding, chocolate bar – (Dairy Milk Fruit and Nut was B’s)
3. Crying

You’ll cry tears like you’ve never cried before. And then they’ll stop and you’ll be numb. And then random things will turn that tap back on. And that’s OK! Happy tears will come eventually too.
4. Relief/guilt

It is the strangest sense of emotion when you’ve been told someone doesn’t have long left, and you’re held in a suspended state watching their every move. Every indicator trying to decipher the timeline. With B, and both my maternal grandparents, we had the opportunity to sit alongside them in a hospital room for those final hours, kiss them, talk to them, tell them we loved them. With all three, at some point I just wanted them to stop fighting, to let them give in and be still. This thought, each time of course, eats you with guilt, wanting to end their suffering, and selfishly appease your own. Yet conversely, not wanting them to go anywhere, willing them to get well and defy the medics.
5. The last words

I think this one can eat you up if you’re not careful. Your last words to them, the last thing you remember them saying. You might not think it at the time, but it doesn’t matter.

B’s last spoken word was ‘Chocolate?’ to the ICU nurse – who couldn’t give him any as they hoped to operate before events changed. More significant in my memory is he waved J goodbye. The last gesture or controlled movement he made before he died 24 hours later.

When my maternal grandfather had a catastrophic stroke, I couldn’t remember the last conversation we’d had. We’d been at their house just days previously and he’d have waved us off as he always did. Looking back the words weren’t important, it’s the feeling and thoughts when I think of such an amazing man that glow.

With my maternal grandmother, we had about a week of ‘she’ll not make the night’ in hospital. Defiant to the end, she was totally going on her terms not theirs. I really struggled watching her last hours. Too many of the noises, sights and sounds and I could not face it yet again. I said my goodbyes and left while she was still fighting. She died about half hour later as I’d just arrived home back to J.

6. Get rid of stuff when you’re ready

There’s no right or wrong to it. It’s harder when it’s not only your decision though. With B, I was able to do it at my own pace. Everything of his moved house with us 8+ years ago and gradually bit by bit, I’ve gone through the boxes of ‘stuff’ and it’s reduced down significantly.

It was very different when it was my grandparents and there was a skip on the drive, and a deadline of when the house had to be empty by. It became a very practical, clinical process. Some of my most prized possessions on my shelves & walls are simply that because of their connection to my beloved grandparents.

7. Some friends will surprise you.

Some friends won’t know what to say/do. Some will try anyway, some won’t. Two friends made, to them probably insignificant gestures, after B’s death, that I remember with such fondness whenever I think of those friends even now ten+ years later. If someone is hurting, send the card, send the flowers, pick up the phone. Drop off a casserole for them. Don’t cross the road to avoid them. Don’t say nothing. Please.

Filed under: HIV
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2016 Roundup

Well 2016 has been quite a year – and, as per last year, I’ve taken the opportunity to reflect and record some of the advocacy work that I’ve done in the last twelve months. Trying to choose a sole image to represent each month has been so very difficult, yet joyful. 2016 – I’ll never forget you.

Global Advocate To Watch List
16 Advocates to Watch list published. Read more.
Applied for AIDs 2016 scholarship

Interviewed by The Guardian
Read the article here.

Interviewed by Radio Lincolnshire
Chatting life, HIV and Think2Speak with Melvyn Prior
Beyond Positive Pub crawl
Drinking and laughing the night away by topping up the heterosexual quota on the Pub Crawl!

Awarded AIDS2016 Scholarship
Awarded and accepted full scholarship to AIDS 2016 in South Africa.
International ‘Inspirational Speaker’ 
Flew to Zurich for pharmaceutical company Actelion’s global annual team meeting as their invited ‘Inspirational Speaker’ to share my experiences as an ‘Expert Patient’ to help shape their 2016 plans for PAH patient engagement- read more.

£3500 for Macmillan
For the second year, as a family, we organised The Gainsborough Ball raising over £3500 for Macmillan. Ok so not HIV related but a worthy event to mention! Macmillan’s support has, and is currently, helping friends & family get through some very dark days.

Crawling & Climbing
A group of us decided to add climbing to crawling pre the second Beyond Positive Pub crawl of the year. It’s fair to say – it wasn’t my forte but watching the boys truly embrace the walls, and crash mats, was a great day!

Filmed by the BBC
Watch this space – due out in April 2017…

Trip of a Lifetime – South Africa
Memories & experiences which will last a lifetime. Amazing experiences, brilliant company, and crikey did I meet some amazing people doing truly inspirational work in the fields of HIV/AIDS from every corner of the globe at AIDS2016 South Africa. Read more.

Filmed for BBC3
Things Not To Say to Someone Who’s HIV Positive – watch the clip here

Accepted Role as 1 of 2 Patient Voices 
NHS England Clinical Reference Group (HIV) Patient and Public Voice – Read more.

#T2SLive Conference
When Think2Speak launched in 2015, I decided a conference was a great way to get ‘us’ on the map for 2016. Well we hosted #T2SLive gathering over 200 staff working with young people from all over Lincolnshire and our neighbouring counties to discuss emotional wellbeing. Read more.

House of Lords
I was honoured to be Terrence Higgins Trust’s invited speaker, alongside their CEO Ian Green, Lord Fowler and the Health & Innovation Secretary, Nicola Blackwood MP, at the charity’s Annual Parliamentary Reception at The House of Lords. Read more.

World AIDS Day
A whirlwind of interviews and articles from Radio4 Today, Standard Issue to London Live amongst others. You can hear part of the Radio4 interview here.

To put it politely, I’ve completed the year exhausted and pensive. Advocacy is only one of the many facets that make up my life, and doing this round up has been a great way to reflect and remember. To lay out some of the amazing opportunities, the things I’ve been able to experience and achieve, and the wonderful people I’ve met, had alongside me and got to know along the way. To each and every one of you, that has supported me, been there for me and believed in me – thank you.

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AIDS2016: Loving, living, HIV, Durban, South Africa & Me


AIDS2016 Durban Scholarship Recipients

Earlier this year I applied for, and was honoured to accept, a full scholarship to enable me to attend the International AIDS Society’s biannual 21st international AIDS Conference, hosted by South Africa in Durban. With flights, hotel and per diem allowance provided I grabbed the opportunity. The BF also grabbed the opportunity to join me there and we got booked onto the same flight! Turns out he makes a great PA – thanks SP!

Before we left I’d poured over the conference schedule and become quite overwhelmed with the breath of content, sessions, events and talks I could attend. The handy mobile app helped me star and prioritise the sessions that I really wanted to be at – at several time slots there were 3 or 4 concurrent sessions so I had to prioritise and choose carefully where to spend my time. The venue was HUGE – equivalent to the whole of NEC I would guess with 3 main areas; the main conference halls, the exhibition hall (mainly pharma) and then the Global Village, bursting with grassroots organisations from all around the world showcasing their responses to HIV in their communities. Interestingly to note – the general public can visit the exhibition hall and the Global Village – you do not need a delegate pass to access these! This was news to us upon our arrival and meant that the BF could see and access so much more from the conference than we ever imagined. There were many many sessions and workshops every day in the Global Village, all available to the general public. So anyone wanting to attend AIDS2018 in Amsterdam – do it – the general public can access loads of the conference!

I felt distinctly different ‘vibes’ from the three areas of the conference; the main conference rooms were clinical, straight laced and had an ‘ivory tower’ feel often devoid of actual positive people on their panels, the exhibition had the £££ of the pharmaceuticals and their swish exhibition stands and collateral to boot, juxtaposed with the Global Village, with their passion, their stories and their shoestring musings to convey on a global platform their amazing work and needs.

I’ve pick out a handful of my musings from a selection of the sessions I went to in both the main venue and the Global Village. I’ve notes from so many more to still formulate into something more cohesive.

LIVING2016 Pre-conference

Engagement Tour: Blue Roof Wellness Centre

Red Ribbon Awards

Condom Couture

The People, The Faces, The Stories

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The people, the faces, the stories of AIDS2016

Personally one of the greatest outcomes from the conference was the people that I’ve met. Many advocates and activists that I’ve followed on social media for many years became real people to embrace, and I met their friends, their colleagues, their projects and their stories. It was refreshing to attend a conference and not to be sold to! Attendee wanted to genuinely engage with each other, exhibitors wanted to share, storytelling was rife and so very powerful.

I am worried though. I kept coming back to the clear lack of mental health support available to my fellow peers, activists and advocates. No one was talking about the pressure, the anger or the wellbeing of the activists and advocates, the toll that can take on people, in their individual communities or throughout the conference as a whole. Self care was wholly lacking. This concerns me. I’ve seen in many a time here in the UK, it needs talking about. It needs addressing.

On our last night in Durban I was invited to have dinner with Mark King, the very gent whose ‘Top 16 Advocates to Watch in 2016‘ list I’m sure, in no small measure accounted for the scholarship I was given to attend the conference. Around the table of guests, there were amazing women from USA, Mexico and Nigeria all individually achieving masses in their communities, regionally, nationally and globally – all equally enthused and exhausted from a full on week on the conference circuit! The conversations were abundant and enlightening and it really was the most perfect evening to end the week on and I can’t wait to see many of those faces again in Amsterdam 2018!

Read more from my time at AIDS2016 here:

LIVING2016 Pre-conference

Engagement Tour: Blue Roof Wellness Centre

Red Ribbon Awards

Condom Couture

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Condom Couture by Adriana Bertini


Entering the Global Village you were greeted by sounds, sights and colour truly reflecting the ‘Global’ in the entrance sign! First thing I spotted was the row of mannequins, each wearing the most amazing dresses in rues of reds. As you get closer you realise – each is created from condoms.

Adriana Bertini is an artist living in Brazil who takes old or faulty condoms and uses them to create art. She goes into schools, gets the young people used to handling and talking about condoms, whilst smashing the shame around carrying them, all while together creating amazing works of art!

The dresses provoked much conversation and I was thrilled to catch the fashion show of the dresses on the last day of the conference as the final session on the Global Village mainstage.

‘Adriana Bertini, an artist living in São Paulo, Brazil, transforms expired or defective condoms into raw material to be used to make pieces of art. These frames, sculptures, and brightly coloured women’s dresses are intended to raise awareness and inspire reflection about condom use. On another level, Bertini hopes that, by using the very material at the centre of effort to prevent HIV/AIDS to create something new, she can inspire reflection, foster discussion, and challenge taboos.’ Read more on Facebook.

Read more from my time at AIDS2016 here:

LIVING2016 Pre-conference

Engagement Tour: Blue Roof Wellness Centre

Red Ribbon Awards

The People, The Faces, The StoriesThe People, The Faces, The Stories