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The Art of Pain

The works of June Okochi Voices of Pain Voices of Pain is a multi-track montage of individuals’ reports living with or affected by sickle cell.

This UK based audio-documentary is a heartfelt and insightful production which captures the featured individuals’ first hand experiences and themes of pain, suffering, trauma but more importantly, resilience, hope and dreams that has enabled them deal with their pain & suffering.

The collection of untold accounts is an unedited and raw artistic expression of people aimed at finding meaning in their suffering and with art forms of poetry, prose, language, sensory, colour and sound which brings their narratives to life.

Created by June Okochi
Sound Production by MistaBooks
Music - The Path by Sean Beeson Click here to listen Enjoy! Portraits of Pain Artists always aim for an expression of their works to depict a true depth of humanity and human suffering with objectives that the recipient can recognize these expressions and connect to their everyday lives. For me, that sense of liberation to express art in forms that may depict pain, suffering and humanity has been the foundation for my work, Portraits of Pain. I use photography as a form of art to express differently, to tell mine and other’s stories, living with our genetic condition (sickle cell) through visual imagery. Portraits of Pain uses photography as an art form to express the different motions that come with sickle cell. It’s a collection of abstracts, that which can’t be seen: - the hidden disease, the pain, the fatigue from anemia, mental health and depression, the isolation, frustration, the red cells shaped liked a sickle, the damage, the resilience, suffering, hope, love, the battle and the fight to overcome. More importantly, I wanted to bring to life the actual subjects of the portraits, the warriors of society, those who go through pain and suffering and who are behind the scenes just “getting on with it”. I collaborated on this project with: UK based photographer, Jim Higham Nigerian based creative director, Ijeoma Okochi-Agwu London production team: Mica Marshall and Thomas Okochi. The models I featured are all London based individuals affected by the condition. This work was publicly exhibited at Imperial College, London in 2019. Pain that assails me ; Sometimes I have the urge to go into the mountains or a remote beach and just scream out loud at the top of my lungs to let out this pain I have bottled up inside for many years We weren’t born rich:
We are not alone. In our world, we may be individuals but we feel the same pain in our bones, shed the same tears, share this same flawed blood cells, walk through the dark together. Hidden behind the veil: Masking my pain has become a skill The Crisis : The pain and crisis come in the middle of the night and all I can do is call 999 and wait Son, Give Us A Minute: "No child deserves to suffer so much pain and all we can do is sit here broken-hearted, helpless, praying that this pain goes away. We know we can't take his pain away and that’s the worst position any parent can find themselves” I Cannot Lose Her Always ready to carry her when she falls (from this pain) because if the system fails her, I certainly wont. Why Me? I used to seek reasons for my pain. I have normalized my suffering. I am no longer a victim. I have found meaning in this pain. #StopDStigma: Sickle on my sleeves A millennial generation who are not inhibited by their pain or suffering and have an exposé of their lives on social media and on hashtags but are caught up by the stigma their parents, grandparents and communities have carried with them. "Hush child! Don't let them know you have sickle cell" The life and death of a blossoming rose: Blossoming a very painful flower, and pricked by a deadlier thorn. Please give blood! It helps takes my pain away. Zoned Out: Sickle cell became that thing that was always ticking along in the background like a white noise, it just sits there and every now and then emerges and demands attention (through pain) at its own convenience. The Sickle On the Heart: I look nothing like what sickle cell and its has put me through. In these dark shadows, shines a light. My heart and my mind is a provenance for how I deal with this pain. 'Weltschmerz': It's this deep pain about the imperfections of my genes Enduring Anguish: A type of pain ever isolating and crushing in its all-consumingness Sickles, the death of us: To be familiar with an ongoing sense of death, organ damage, pain and suffering feels like a constant visitor & an unwelcome guest we have to deal with Trapped: Like being caught in a trap, and never being freed from this pain A World Without Sickle Cell: I often imagine what my world could look like without this pain I Only Cry At Night: As a black man, I was taught to never show weakness or pain Eyes Wide Open: As a child, what I knew was what I knew, and I didn’t necessarily draw equivalences with other people’s lives to see if my experience was the same as theirs. I just went with the flow and the pain Look closely, I Am Sick And in the end, with this pain, I have learnt how to be strong alone Is Love Enough?: Love is beyond just a genotype and genetic imbalances. In future generations, must come poetic justice The Helpless Tears: As parents, we want to protect our children from pain, suffering, traumas and distress but how can you control the suffering and pain that comes with the flaws in their DNAs? How do you watch your child suffer and you cannot save them? Glass Full; Like drowning each day in the spring I need to survive the pain by treading water constantly You Can Do It: The forgotten stories of parents who not only raise a child but give life to their sick babies living through pain. Blood that runs through my little fragile veins: Life Changing Exchange; Exchanging my blood to receive new blood. It’s the blood of kind strangers, members of the public who donate their blood that keep people like me pain free, healthy and alive. A Warrior who Beat Life Spans: "I am awake. I feel liberated, I AM NOT ON BORROWED TIME" Protecting those We love: Of what use is a feeling of helplessness that can't take the pain away? Life Support: Trapped in her pill pot and masked by her lipstick. Who sees the pain? A death unseen: (Avascular Necrosis); The pain feels like a Barbed Wire is constricting the bone and then it eventually dies. Mummy, you are my rock:
The impact on families (especially mothers) as choice becomes a primary focus in the context of social perspectives when considering to have children who could live with pain and a disability for the rest of their lives. Strengthening ties with loved ones; Allowing me to be helped, loved and saved. He remains the hand that always helps me up through pain Letting my tears drop: sealing my pain in these tears and finding solace and strength in letting go. The burden of guilt parents carry watching their children undergo excruciating pain. In loving memory: We leave the light on and the red roses for those who have gone too soon, for those who will never feel this pain ever again. Ever again Sickle cell anemia is a blood disorder that causes the red cells to be shaped like sickles and therefore restricts oxygen from circulating within the vessels, the organs and other parts of the body, causing excruciating pain, organ damage, fatigue, strokes, avascular necrosis, sickle cell retinopathy, cardiovascular problems, and sometimes early mortality. #sicklecell #pain #health #art #photography

The Art of Pain

Try Sleeping With A Broken Heart: Alicia Keys

"There are those among us who are blessed with the power to save what is loved by another. But powerless to use this blessing for love themselves".

Alicia Keys

Try Sleeping With a Broken Heart, The Element Of Freedom, 2009

This song hits every part of my core.

From lost lovers, to broken hearts, family rejection, loss of friends, loss of grandparents, grieving loved ones gone too soon, euphoric recalls, blue animations, elusive epiphanies, moving to a different country, going back to it, staying in a new city, puzzled by cognitive dissonances, frustrated by writer blocks, traveling alone, peering into cotton clouds through airplane window seats, kissing and waving goodbyes in airports, coach and train stations, childhood traumas and adult ones, unintended smokescreens, high reaching ambitions, coy pitfalls and soft landings, road trips and rail journeys to off the beaten paths, showing vulnerabilities, knowing responsibility early in childhood, through betrayals and false claims of clairvoyance, being sleepless in cities and dreamy in some, rides in ambulances, solo hotel check-ins and calls for room service, silly dramas to petty jealousies, my creativity, to remarkable admirations, through reconciliations and bewildering wide berths, hospital corridors, misconceptions and unconscious biases, starting new jobs and office leaving dos, memories of Prince (RIP), to illusions and delusions, paving through my lack of judgment of unrequited love, misreads of potential ‘hook-up’ tensions and non- reciprocal crushes, taking my ‘L’s taking my f^cking ‘L’s, settling well with an open mind, getting lost watching the waves of the sea, through to beautiful sunset walks on sandy beaches, scary nightmares, accepting what I need and not what I want, mid-summer meadows and depressing winter dark nights, self compassion, ongoing discovery and therapy for my core, impulsive spontaneity, being too upset I could barely stop sobbing, self- pity and self-remorse, absurd logics, silhouettes of seasons, navigating through pretty tough ambivalences to a coordinated mind, growth and beauty, wonders to thunders, pillow talks to pillow tears, forgiving myself and trying to forgive others, experiencing sensual luxuries and letting go, having great times and understanding the need for hardships, obscure arguments to pent up feelings, my foolishness and lack of intuition, times of (re)healing, recovery, past bouts of reactions stemming from a young lady with a bad temper, good control and balance, bounce backs from serious sickness episodes, navigating the world on topics such as world wars, global terror and child poverty, a desire to long for more, fears of an early mortality, meditating through silence, thriving on rejection, simulating regrets and mistakes, a silly Catholic guilt to dumping religion, crying over jazz, northern and neo soul, finding my path through rock bottom, shifting my personal narratives and (re)basing them on self worth, loving the framework of my identity as a dual national of 2 beautiful countries, lingering on passionate kisses missed, teenage love affairs, the painful resulting anticipation stemming from distant relationships, learning to receive and relax, through my pursuit of hedonism, finding my cause, dancing nights away under the illumination of the moon, holiday romances that were some of the best times of my life, understanding true fulfillment, understanding true happiness, through wandering thoughts, a show of affection, hospital beds, rebel hearts, magical fascinations and flat feels, holiday blues, warm cuddles, trying new interests, dumping them, upholding my values through reassertion, living my fantasies, the tale of love stories, writing poetry, drinking beautiful red wine and getting emotional, every time I am being told I am a new god-parent, getting off a horse after riding it, boat rides in Europe, lost in a good book, lost in a city, meeting strangers and falling in lust with them, Saturday long showers or hotel bath soaks, when he travels and I miss him, in my silences and me-times, through selective memories, to missing my family, through artist dates, morning pages, journal entries, unforgettable laughters, lonely Christmases in my 20s without family, Tuesday dates, spending New Year’s Eve and New Year mornings on a hospital bed, giving my fish pets away, being risk averse, being restless and loving inertia, being broody and yet unbothered about kids, through hopeless nomadic episodes to being dynamic and unconventional, floating in water, hating astrology and swearing by it, understanding unconditional love, crushing a dysfunctional sense of responsibility and letting go, finding balance, certainty and self love.

Finding balance, certainty and self love.

Finding balance, certainty and self love.

...and without a doubt finding the ELEMENT of my FREEDOM.

Thank you Alicia Keys for the gift of music, one that I will resonate with.

From here, in life, and till my dying day. This song means a lot to me and represents too many things in my life. I can’t write it all. It saved me. 10 years past and I haven’t stopped listening to it.

#trysleepinginmybed 10 years on and I am still in love 😍

Try Sleeping With A Broken Heart: Alicia Keys

A Letter From My 8 Year Old

A letter from my 8 year old self

Few months ago, I met Julia Cameron. She asked me to write a letter to myself from my 8 year old and my 80 year old.

I have never had to think of doing something so simple yet so incredibly hard in my life but I did both (on ink and paper) and I posted it in the mail to myself. The one that particularly made me cry and feel so many emotions was doing one from my 80 year old self. It was a few reams of paper and I have decided to keep it personal for now. Maybe one day, I will have the courage to type it and share some excerpts of the letter.

Dear June

Look at you.

You are such a pale little pretty, skinny girl. So fragile yet so strong. So it’s important to remind yourself why you are here.

So here is the deal

There is an incredible world of opportunity for you to shine your light and make this world a better place. Yes.

You don’t have to be some big hero or superwoman. You don’t need the attention or recognition to make an impact. Be understated.

Just do your teeny tiny little bit in the world and let that be your legacy marked on this earth.

The earth is too big, the sky too wide for you to craft your own little space and find your corner.

You know your condition is part of your DNA so it’s going nowhere. Regardless of your health challenges, your genetic imperfections, you have the power to touch the sky, to find your purpose and to touch lives. Everything you dream is possible if you work hard, dream big and believe in yourself. Push those boundaries. Its so bloody cliche, I know but let’s give it a shot.

With your Illness, there will be constant pain and suffering and there will be life challenges that may or may not be health related but you have to raise your head high, fight them and walk gracefully out of them taking the learning and finding meaning in each of these events. Let that remarkable strength you have be a constant sense of solace that in the thick of it, in the bottom of a rot, in the dark pangs of depression, you will always come out the other side rising, still rising. Because hey, look at me, you don’t have a choice. It’s only one way sweetheart.

I hope you eventually get to live by the sea or the beach as you have always dreamed, writing whilst watching the sun set and rise. Maybe even practice yoga each morning, ride horses weekly, find little fun adventures to experience and travel the world with someone you so love.

Remember true love shines so brightly. There is no question about it. Love is kind. It’s simple. You will recognize it when it’s binary.

Never forget your family

They will always be there when people come and go. There are the guardians of your being on earth. Love them. Unconditionally.

I hope you find someone, a partner who will love you so affectionately, look after you, feed you on your sick bay, hold your hair back when you are sick, kiss your feet and tell you each day how beautiful you are. It’s that simple June. And if you get that, you know he is precious to you so be those things and more to him.

Nurture good friendships. The ones who genuinely care about you. It’s rare these days and allow yourself to be loved by others.

As you climb, don’t forget to lift others. There is a huge difference between sharing and giving. Recognize your role in these and the impact it has on others.

Find peace in solitude and being alone but don’t be lonely.

As much as your physical health remains a focus, don’t forget to look after your mental health June. The traumas, the pain and the suffering will have a toll on you. There will be losses, grief, heart breaks and disappointments. So you must remember to look after your mind.

Let your self development and self care be your daily motivational factors.

Lose yourself in the arts since that’s what you have chosen to immerse yourself in.

Keep creating. Don’t hold it back as you know what happens when you do.

Educate yourself daily. Never underestimate who you learn from. Whether it’s a child, a homeless man on the street, a wise old person, someone from a different culture. Use different forms to learn.

Have an open mind.

This is very important.

Always, always show gratitude for everything you accomplish because in doing so comes more blessings.

Pray for the sick and those at the end of their lives, the poor, the shell shocked, those at war, veterans, sick children, the bereaved, the helpless and help them when you have the ability to do so.

For perhaps your ‘healing’ could be buried in the (gift and) act of doing for others.

A sense of lack is created by you. It comes from within. Always recognise this feeling. You lack nothing.

You are NOT entitled to anyone’s attention, no one because with this expectation comes resentment and we aim for contentment. Be aware of it.

Always, always be kind to yourself, June. And kindness starts with the little things, from a soak in the bath, to a walk in the park, to having a lie in on the weekend and breakfast in bed. Whatever makes you happy.

Show yourself compassion and empathy. And then show these qualities to others because these are the ultimate tools that will guide you and show you the path to navigating life. It will attract goodness and positive energy.

Love is in you. You are your own love story. Make your life your fantasy.

Everything you dreamed of your little barbies as a little girl, the life of paradise? Dream it for you.

You will soar

You are beautiful, June

So overwhelmingly beautiful.

You are smart, kind, strong, compassionate and just pure.

Your heart is deep in soul

So keep that love burning

Be the vessel and let the light in.

Keep discovering yourself.

Be restless. It’s ok to constantly seek to find. Expand your mind.

Change is a good thing. Thrive on it. Be the alternative that excludes.

Discover your purpose.

Live a great life in this beautiful, yet chaotic world.

Find consciousness in every action you take.

Laugh, June, laugh.

Have so much fun like everyday was your final one. And as much as you are aware of life in its entirety, be also a little aware of your own mortality.

The world is what you want to make of it and if you are fortunate, it could be topped up with a little bit of luck.

Do all the beautiful happy

things you love doing.

Forgive yourself

Forgive others

Learn from your mistakes

Show your vulnerabilities

Wear them on your sleeves.

Because in showing vulnerability comes bravery.

And in sharing vulnerability comes a connection to the Light and the universe.

Do not be afraid.

Be generous even when you don’t receive generosity back but do it with consciousness.

Afterall you are not being kind to others for reciprocation.

If people are unkind to you, do not be unkind to them but feel free to emotionally and physically check out from that space.

Because at the end of the day, you can’t change a person’s behavior towards you but you can choose how you react to them.

Always question and explore the “whys”.

Climb baby, climb

Run, soar, fall, trip, fall, rise.

I know you can do this thing called life.

Repeat after me June.

“I can do this thing called life”.

And remember always that life remains the single most precious thing in the world.

Always remember balance and certainty are tools to keep handy at all times.

I love you so much and the one ultimate thing I wish for you June is eternal happiness. Anything else is just a cute little bonus. Right? So let’s do this deal.

Yours eternal & affectionately yours

June Okochi, Your 8 year old

est 1988 #letter #loveletter #8yearold

A Letter From My 8 Year Old

A Summer Day in Little Venice, London


A Summer Day in Little Venice, London

Where the Wildings @?

“May I please I get a return to the end of the high street ”
The line which had become my lucid chorus to the bus drivers each morning. An eventual broken record. In London, my ‘Oyster’ tells the driver all and nothing.

Through Kendal Avenue and beyond

I am circled by rurality and farmlands

Taylor’s ‘Sad Beautiful Tragic’ in tune

Perfectly paired to complement this actuality . Fogged by faces of white middle class English folk Larded by luxury cottage homes, secure within private roads and gated communities. Perfectly quaint front lawns

Colourful garden porches stretching an average of 30 metres beyond front doors

Filled with curious spells My obsession for mewses rather loud

As my addiction to daffodils in spring bloom. “Could you make it extra hot, please?”

I besiege for a flat white or skinny latte Its the umpteenth time I am handed a cup full of lukewarmth

The luxury idea of Eurocentric regular chic cafés

Of coffee and cake breaks reading a Vogue or Tatler magazine. Of after-work drinks in a series of city bars flirting with male colleagues

Is an overwhelmingly lure of faded pictures. My infinite frustration wrapped in a town which produces local sausages by the Church’s Butchers

Seemingly now has nothing more enticing than a bowl of boring cream of mushroom soup and a dense roll with hard butter An absolute tornado of culinary disaster lacking colour or sensation. Struck by a mundane realization

Reminded of a single flimsy routine which once excited me. The Office’s Friday Cake Club

One of too many I caved in
I now eat more Welsh cakes

Manage a decreasing average weekly steps of 4k. And store up more torn bus tickets
Devoid of choice to avoid a drive past the Monday flea market

Of fresh bread loaves, bright coloured scarves, tired traders, fresh flowers and neglected efforts

Middle class Baby Boomers offer awkward stares to the negro girl.

Who clearly stands out like a sore thumb

Like the one I got when I visited Kilmarnock with my ex

Or was it parts of Eastern Europe

Yet 15 miles away lies London suburbs, West of town I want to stare at you

Whist you lead your horses back to the stables

Maybe I could ride them perfectly to the fields

Get lost in rhythm as I bounce my perky butt on the saddles

My equestrian thoughts drift back to rhetoric wild lines A compulsion to stand at the exit of the station each morning waiting for the 420 or ‪420A‬ that never comes

The crossing of deers more frequent than the arrival of buses. I watch lovers, parents and children paste kisses on each other’s lips and cheeks Followed by impulsive goodbyes as they drop off Signaling that there is generally still love in the world.

A code predominantly visible in stations and airports. Young blondes, tanned orange as Mr America

Plastered and baked in layers of make up

An anxiety jets inside me

The slightest smile could leave a crack on their faces

They walk past in clumsy heels and cute Essex accents

Flattered by ‘Jolie’ blown up lips

An ode to “Botox gone wrong”
Men in super tight skinny jeans. The era of fashion headlined to stop circulation in their penises

Enamored with perfectly groomed lives

Gelled down hair

And heavy cologne leaving a residual linger in the air like London’s air pollution. The still and quiet at the top of Palmers and Stonards hill even on a typical Monday morning scares the fuck out of me
I wonder if my proximity away from London is a metaphor for my mental retirement The lifelessness of the ‘deux’ I challenge my exchange for city pace, the rat race

Pedestrian traffic, regular brisk walks, busy bicycle lanes, perfectly made coffees, crusty hot croissants, impatient city folks navigating through rush hour, lost in the myth of tube delays, the cliche of A12 and M25 traffic and a world wrapped around my creativity.

To what had become my new normal of a slow dying life

A heave of foothills

Mirrored by unremarkable calm

Wet and muddy earth Of Red Road Warning Signs that read “Beware of Cattle”

And others written with chalk on boards “Local Farm Fresh Eggs for sale”

Landed with momentarily morning dog walks And a patting ritual of a cute fluffy mutt

Her owner welcoming my encounters for 30 seconds

As I and the mutt are mutually comforted

My structured motivation retires lifeless like the rest of this place. I am surrounded by dews of loneliness, bare fields, lavender, empty spaces and 1950s bungalows Some filled with boxes of unthinkable history

Furniture preserved or hoarded in derelicts

Lost boxes of quirks

Old rusty vintage candle arbours, broken cheese boards, tangled Christmas tinsels, tucked amongst dead paraphernalia and decades of dust. Regressive feasts undertaken by human encounter 
Underwhelmed by windows gleaming not of scrawny city foxes on tube station fences. But of an array of endless trees, the occasional sight of pheasants, sea gulls, squirrels, magpies, rabbits and more black birds The daily east bound journey on the central line, stretching acres, fields of green off the beaten paths

Landscapes focal. I am the girl with a seat on the train

Delving from outskirts of the city to views fading into the countryside A clear facade of what I see London, my city to be

Undesired losses

Channels of Jemais vu

Triangulated to a less familiar place Relentless hunger of regrets

Frank nostalgia

Geographical and culture shocks

Unappealing peers For growth, was to delve out to go up
. I walk from Maltings Lane into process and bright horizons
Matted maroon red and vintage green classic Jaguars

‘D’ ‘E’ ‘F’ and classic S types all parked impeccably in the lot

In line Under wild berry trees and between wide woods. In picturing a soulless state

Was a euphemism

I moved from diversity, a concept of my magic to diverse

A world clearly made for some

A definite misfit of culture, one devoid of diversity, but clearly and tightly diversely perfect. “Thanks, have a lovely day”, my lucid chorus to the bus drivers, as I approach the front doors of the bus
“You too”, they retort with a nearly forced grin

Aligned with uncharismatic patterns, 
I step out with careful tease not to end up with murky boots

Look left, right

Make a crossing

Into chaotic structures

By all means

Retain your “rural charm” Unapologetically, I will engrave my soul in city lights, grit, graffiti and grime West end plays, high street stores, night life Art fairs, gastro pubs, 24 hour tube lines, slutty and gay bars, chic cafes, African restaurants, indie galleries, penthouse sky bars, picnic in parks, alfresco lunches, cabaret shows, hip hop concerts, 24hr breakfasts bars, city farms, tapas joints, museums, jazz clubs, luxury hotels, heels on London pavements, cream tea parties, readings at poetry cafes, diverse tribes and faces, encountered races, city airports, French restaurants, Dress ups, make up

Run for buses that actually show up

Drink perfectly made flat whites Because the bloody buzz

Because, fuck rural

Because Of what use is a life of horizontal value

Lacking in essence of time

Of empty spaces

Of necrotic motions

Of diverse vibes

Of all that sustains my creative mind

For breeding contempt

Is a reality of disabling legos building up A far fetched tunnel vision of herewith

I, a product borne of cities shall dwell in the houses of Cities forevermore.

And like Meesh would say
“It’s not the suburbs”
“It’s the urbs”

It’s essentially fur coats with no knickers

Friends ask, where is it you work again?

West Essex

Response, “where is that”?...

Oh Hail my tragic tale of a move from cosmopolitan chapters and a city that never sleeps to a linear necrotic village

08228, The Village Forest, 36, A Circus of Uncertainty #citylife #rural #cosmopolitan #surburb #london #lifeinthecity

Where the Wildings @?

Enda Walsh’s ‘Rooms’ At the Barbican

I booked to go to this one alone and have just spent 2 hrs after work at the Barbican. It’s been fascinating to experience for the very first time, a poetic series of 5 rooms delivered in the context of theatre.

The 5 rooms consisted of a kitchen, a hotel room, an office room, 33a, a girl’s room and a bathroom. In all 5, were accounts of poetic (and prosaic) series of the 5 characters.

Our theatre host would confine the 6 of us in each room as we listened to voices of solitude, loneliness, accounts of day to day stories, and proses of life. The production was basically an immersive theatre installation of sound, light and darkness.

This creative was developed by Enda Walsh and narrated by some of Ireland’s most distinct voices – Niall Buggy, Charlie Murphy, Donal O’Kelly, Paul Reid and Eileen Walsh.

According to the Barbican, this is the first time that Enda Walsh’s five short stories to date are presented together as one performance. Unrelated, yet all springing from the loneliness experienced by ordinary people, they take on a quiet poetic force through remarkable storytelling, punctuated by stark lighting and sound. Contemplative, atmospheric and sure to stay with you long after you’ve emerged. As National Poetry Month is celebrated in April, seems very timely to treat one’s self to some good old art and poetry.



Enda Walsh’s ‘Rooms’ At the Barbican

Martell Cognac; Spring Sensations

In April 2017, my friend invited me to the Sea Containers, formerly Mondrian Hotel in Southbank, London for dinner. As I finished off my desert and my last gulp of wine, I was approached by a member of staff who told me that there was a Cognac Masterclass including a tasting session upstairs. I told him I was keen but he managed to convince me and subsequently handed me a keycard to the suite where the event was taking place. I went up to the hotel suite and was welcomed warmly. After a show round the various sample flavours, the bar, and some great collections, I relaxed to enjoy a few tasting shots with some quality macaroons. Life is about experiences especially when spontaneity leads. It was a fine free experience and VIP treatment of Martell Cognac by Le French at the Martell Suite. I parted with 3 give away gift sets of Martell Cognac and Parisian quality macaroons- I gave one to a friend, one to Neil and kept one.

Martell Cognac; Spring Sensations

Nocturnes; Windows of Sublime Circles

I put my iPhone on airplane mode, alarm set for 6.15, computers out of sight, cup of camomile tea done, lights out. It was probably a hundred and fifty seconds later since my head finally took its lay to rest on what has become a mountain of pillows to help my sleep apnea, spooned by ‘nkem’, his hand strung across my torso holding tight as if he was scared of letting me go even in sleep. I smiled. It was endearing. I lift his deadweight hand from my waist and place his fingers firmly on my right breast. My eyes wide open to the dark grey night, scanty leaves on trees in heights swooning in rhythmic waves to the response of the winds, a reminder that Spring is nigh. A plane in sight perfectly positioned between the nighttime cloud and skies, illuminated by safety lights indicating per second, warning for motion until it fades away into the clouds towards its fly path, far out of sight. I wondered where it’s final destination was. A continent or a world far away from my bed? I thought. A moon crescent in sight, rotating westerly from the window. The only lights in the neighborhood illuminating from two windows of the building east of my bedroom between the woods. ‘Nkem’s’ breathing heaving with a very light snore which suggests he has now travelled deep into a sleep trajectory onto the morning. I take a very deep breath into my lungs. Lights from those windows suddenly go off indicating the owners have gone to bed, dancing off the night.

And with all nocturnal activities at heights settling and a few stars in the sky left as it began to darken, I begin to wonder and wander into dark thoughts, some of which include my profound pain and mortality - a life of what I aspire but can’t reach, a lingering sense of devastation of the possibility of suddenly losing my sight after I hadn’t done myself justice an hour ago listening to the words of my medical retina consultant which I recorded on my iPhone in my last clinic. I wondered about my hip replacement surgery, my supernumerary tooth which requires surgery. I wondered about my sleep apnea which has been self diagnosed and the fear of being clinically diagnosed wasn’t welcoming. I didn’t need more of this shit from my body. All they do is fix me like a broken digital appliance until I break again. I sigh

My mind travels to words of my Pa, my sister and ‘Nkem’ saying “everything will be fine” and I don’t think it will. I think about the sudden longing to be with my wider family soon.

My mind travels back to last May in New York having being blue lighted from Warwick Hotel 5th Avenue to Mount Sinai 7th Avenue, in the most excruciating pain I have ever experienced- after 24hrs , I self discharged , signed my death sentence, and boarded a plane back to London on an 8hour flight with acute labored breathing. After touch down, I am blue lighted once again to intensive care with a lingered life threatening crisis into June. A relegated sense of trauma fills my heart- of how I travel with pain from city to city, continent to continent, fighting an overwhelming sense of fear of my own mortality.

I sigh at how I had moved from my natural state of peace to an unfound place of darkness and suffering. As I ease out into faded depth of feelings, the midnight central line goes past and the sounds coming from the front room, now awakens my sense of oblivion to the fact that I have to sleep. The alarm goes off at 5.45 and I would find I am back in the tragic pattern of waking early into an abyss of fatigue, my head not right. My body weak and I would have to gather my broken bones, sick body, weak legs, my wounded heart and my shades of pain into something called work which at the moment doesn’t work. But I will need to act normal and essentially smile often to hide behind the facade that all is well and I am up to this. Because I have normalized this shit.

That rude awakening sends me to seek peace from a source internal to my core, badge these intricacies into a luxury of hope and tell myself to sleep, sleep June baby, sleep. My eyes wide shut with hopes that I have one other opportunity to wake up the following morning to see my ‘Nkem’, next to me, someone I love very much and hope I can stick around longer for. #nocturnal #nights #nighttime #dark #sickle #mind #travel

Nocturnes; Windows of Sublime Circles


If I dare say, it was the loneliest of times The best of times, the worse of age, the best of laugh, a situation of choice, a step closer to my haven.

My deadpan heart

I embraced it all

We glanced at jealousy

At paranoia An ugly picture of an improbably fate.

I begged internal factors

Please keep your claws off my man

My recollections of about a century of weeks ago where I walked into the store of greatness and I found him in the isle of whipped cream and luxury

In shades of light

I picked him up

He was heavy as I had him sit in the bags of my burdens

He weighed so much in qualities and yes I paid for what had become my (his) excess baggage

With an existing burden of proof

I trolled on

To get to my destination

Recall, that one where I wrote about finishing and finding 'perfect'? It was such an imperfect move

I can't even wait to see my own destiny

The world watches with eagerness as their hearts stop for a second when they sense I am a step closer

One seed of hope

My teething phases leap to the bed of the sea of my heart

The waves of unconditional love more resounding than ever

The one I dream of

Ever there in a generation of years

Leeching in his own shadows

Waiting for what I know nothing of

His heart on an edge of a steep hill

Because I/he knows what we are both capable of

Yet we stay.

Yet we love

Yet we breathe

Closer to our mad souls

His whisper only brings me close to a potential bridge of a firmed conclusion

Time, only, only time will tell us where we head thus far

As Shakespeare eluded to

Perhaps I am his be-all and end-all

And so he be to me.


Bon Appetit; My top French Restaurants in London 2018

Last year, I made it a personal obligation to eat more French food in London given that in 2018 I was too unwell to make my usual annual trip to the South of France or anywhere (I had planned) for that matter.

So here are my top 5 French restaurants in London for 2018

1. Les 110 de tailevent, Marylebone

What makes this restaurant so bloody amazing is the exquisite menu and the extensive wine list of 110 different wines. This Michelin starred restaurant is located in Paris and also serves a branch in London Marylebone which has meant that die hard Francophiles as myself could be treated to the finest of cuisines in London. Each food course on the menu is picked specially by the glass for you so all you have to do is order your size and voila! A little stroll around Marylebone village is lovely in the summer, and then what makes it even more special, is the treat of Fine French Food. Definitely worth a visit, at least for the concept. 2. L’Escargot, Soho, Leicester Square So I had pre Christmas dinner at this restaurant with my partner and his family. We had Beef Bourgogne and his sister, Lynn had a coq au vin. You cannot go wrong with these 2 classic French dishes especially for winter dinner. So there, we wined and dined at this gorgeous grand restaurant following the legacy of many celebrities.

This restaurant situated in the heart of Soho has hosted stars of stage and screen for many years - some of which include, Coco Chanel, John Gielgud, Mick Jagger, Elton John, Ralph Richardson, Judy Dench, and the late Princess Diana. It’s also a perfect restaurant for Pre-theatre and post theatre dining if you are heading out to London for a romantic date.

Speaking of theatre, someone was meant to book the Tina Turner play 100 years ago. I am still waiting.

Oh and don’t forget to try either the French onion soup or a kick of the crab spicy salad. The creme brûlée’ is magic. Definitely recommend and of course its one of London's oldest restaurants. 3. La Poule au Pot, Chelsea

Situated in Chelsea, this is the most French restaurant I have ever been too in London. I loooovvve it. Getting a table here could take a bit of time because its a small intimate restaurant and quite popular too - I had booked 3 weeks in advance as most of the weekends were fully booked for dinners- so it was an anticipated and heightened crave to eat dinner at this place. I also like the fact that its situated in a quiet residential street in Chelsea (Ebury Street). Neil and I were on a planned little date night to see Frida Kahlo's exhibition at the V&A after which we made our way for dinner there.

Its beautifully rustic and cosy, a romantic candlelit French farmhouse kitchen restaurant furnished with dried flowers, crumbly walls, and nooks and crannies all over the place. Perfect date night restaurant for food and an organismic feeling of satisfaction. The mussels, escargots and Venison were superb. Neil ordered the wine, he is the best sommelier I know so I couldn't be bothered listing the name of the bottle but it was so damn good. If you find yourself in Paris, there is a branch there as well in Rue Vauvilliers. 4. Le Relais de Venise, Marylebone

My mate from work recommended this place after he went on a weekend date night. So of course, we tried it. With branches in Paris, New York, London and Mexico. They picked well. 4 cities, 1 specialty! Steak! It’s all about steak here. However you want it cooked. Blue. Rare. Medium. Extra burnt. Just mention it. You will get fries and a veg salad. You know how they say the French cook the best steaks? This restaurant is truth. The profiteroles were a good choice. Make sure you order a bottle of red! 5. Balthazar, Covent Garden

I had a Christmas meet up here with my mate, Samantha. We had always agreed to meet up for brunch but had not pinned down a place so I came across this place from one my reads. It had a jazzy type setting and a feel of 1950s New York and Paris to it. It was bustling and overflowing with humans. and the cocktails, pure art. It’s a lovely colorful brasserie popular for brunches and lunches with a typical French menu. I had the eggs royale which was really nicely cooked with an exclusive cocktail which wasn’t listed on the menu. Sorry, I never got the name as it was too noisy to hear the waiters. But ask for the waiter’s cocktail recommendation. We had creme brûlée’s for desert. It was creamy a.f with a little shortbread biscuit to go with it.

Magic! P.S the next time I visit with N boy, I will be trying the NYC pancakes. This place has a Parisian NYC feel to it and its amazing because we are right bang in the middle of London. Oh the interior of the drinks bar and the oyster bar was absolute art. I loved the dark wooden panels, red leather seats, the chandeliers, the marble clad pillars. The waiters were very professional. The Dutch man who served us was hawt! Yum! So here is to exploring more French food culture in 2019. As I get whisked away to the Caribbean to live as an island girl for a couple of weeks, Martinique and Guadaloupe is one on the list of Island hops so we will be making sure we get that dichotomy of Creole/Mediterranean and French Cuisines. I also plan on taking N-boy to Gavin at Windows for his birthday. Hopefully in return, he will take me to Hawaii for my 40th. LOL

Anyway, my final words - the beautiful thing about enjoying food is the sense of taste. The sense to close your eyes, feel textures, taste flavours and feel something, anything that speaks to you about the food- is what makes food enjoyable and sensational. It could range from euphoria to desire, to adventure and satisfaction, to orgasms and even love. I have learned not just to eat but to taste, to enjoy, to feel.

Eat, Pray, Love Dis-moi ce que tu manges, je te dirai ce que tu es. #food #frenchfood

Bon Appetit; My top French Restaurants in London 2018

The model I created will be a lasting legacy

In August 2017, the NHS commissioned myself and 2 other amazing humans I work with (through the national charity) to design and develop a model of care that is primarily focused on mentoring children and young people (C&YP) between the ages of 10-24 living with sickle cell. It was commissioned specifically in the boroughs of City of London and Hackney.

For someone who thrives on change, my life choices and goals have been primarily my responsibility but I know I have a significant indecisive personality when it comes to taking major risks or making a difficult decision. So often times, when I am faced with major ambivalence, I would prefer people I trust (mentors if you like) to make those decisions for me or at least support and lead me down the path of clarity.


Think about who a mentor is to you. People have so many definitions of who a mentor is and what mentoring means to them.

I have all kinds of mentors. Some of the approaches are formal and structured (specifically my career mentors) others probably just adhoc and informal- many of the people I look up to as mentors are actually totally oblivious of the level of inspiration they fill me with. Some, close loved ones.

But heath mentoring? What is that? The Department of Health (DoH) defines health mentoring as: …a relationship between an experienced and a less experienced person in which the mentor provides guidance, advice, support and feedback to the mentee. It can be a focused, planned relationship where the mentor assists the mentee achieve greater self-awareness, identify and plan alternatives and initiate and evaluate actions. Mentoring relationships have a clear start, evolution and ending.

Health mentoring has become a recommended social model of care endorsed by Public Health England, one primarily aimed at peer support. The model highlights this type of peer support promotes better health and wellbeing for people living with long-term health conditions but the evidence behind the outcomes is still very theoretical. That said, there are small pockets of research going on globally to identify and pin down the benefits of the model. It’s a difficult one to isolate health benefits (singularly) to just because people are usually healthy or well due to multi factorial reasons. (see HRQoL) However, it is usually considered an enhancer to a combination of a number of other coping strategies.

Now one of the things I enjoy about life is creating from scratch. Creativity brings out a number of different emotions for me. I enjoy being given blank pieces of paper to formulate, to develop. It’s why I enjoy jobs no one has ever done before. I make it mine and I create strategies (that work) for a population and deliver them. It’s a passion of mine and when there is passion, you are likely to succeed, if you are driven. I believe everyone can be anything as long as they have some level of logical reasoning and creativity.

So redesigning and transforming services, developing strategies/ policies and implementing them is something I have been doing for several years in career and so I was excited after being approached to look out for this (health mentoring) model. And because it was a fairly new model, there was essentially a need to make this model become a ‘proof of concept’, one acceptable to the health care commissioners and funders, to enable them see the value for money and return on investment, the importance of sustainability and the reduction in service demands for heamoglobinoptahy services - but more importantly, the outcomes for C&YP and their parents who are at the center of it all.

So my team and I got to work and essentially designed a model. I was made lead mentor for the programme. I had the leadership skills but I didn’t have a template to work with. There wasn’t a lot on the Internet or in reality to provide an opportunity to replicate something, anything, so it was always going to be a case of ‘inventing the wheel’. We soon began set up processes, policies and operating procedures. We designed our model of care including articulating quite clearly the outcomes we wanted to see from these C&YP who suffer the same condition as us. Their goals and their well-being was our priority. With my experience of working with the NHS and the combined experiences of my two colleagues who had legal and business development backgrounds respectively and a wealth of experience mentoring young people, we knew we could do it.

We started to mentor children and young people in face-to-face sessions. Sometimes jointly with their parents specifically the under 15s.

It soon became an issue of capacity given that I work full time, run other projects nationally and personally, run my charity and of course and more importantly, I have a life outside all these things.

I started to resign from different roles and functions that I was involved with before the work started. For example, I resigned from being the volunteer coordinator for the Sickle Cell Society, a role I led on (voluntarily) for more than 2 years. I couldn’t support a cause I cared much about- led by Action4London - a cause that supports the most vulnerable communities in London and I also had to take a back seat from the Board of my support group, Solace. I left my social book club, stopped attending the poetry cafe, reduced creativity, socialising began to decline, I actually travelled less. Even time with my partner was compromised but he is my biggest encourager so he didn’t mind. He just nudges in the background to keep going recognising when he needs to stop me for my own good.

Commitment; I was committed to making the pilot a success- and essentially the measure of success was very much focused on the happiness, considerably good health, better quality of life and achievement of goals for these kids.

The business development side was important but secondary. I mean it became primary towards the later part of the year when other boroughs started requesting business cases and we had to complete the evaluation report for commissioners.

And because each child and young person are so different with very unique health challenges and life goals, it was exciting yet interesting learning about their challenges, their resilience and determination to be better at everything and of course I had to create different techniques for each and every one of them. To be honest, these upcoming millennials are incredibly brilliant. They amaze me.

They taught me a lot about my own self. But considering how different they all are, I realised the golden thread was that they all just wanted to stay well and pain free and ultimately, have a better quality of life.

Our mutual health experience was what I used as a model for the programme and I hoped that would enable them see that life is totally what you make it to be.

Anyway, so I started squeezing sessions in after work most weekdays and mentoring full time on the weekends. It soon became incredibly important that I had to adopt a booking system to stay organized to be able to joggle work, my children (the mentees) the business development side of things, my own health and well-being, my personal and social relationships, travel, my self-development, projects and other personal pursuits.

24 hours in a day was never enough to do all my work. The benefit from this was that I became super organised. All that admin after a session, ah! There is nothing as dreadful as administration when you just need to practice. I am a writer, I shouldn’t complain, but admin is boring! However, when you are dealing with children, its absolutely necessary and paramount – safeguarding kids is one of my many values. A mentoring meeting is typically held in a café, library, and other social hubs (usually mutually convenient for both parties) over coffee or hot chocolate, cake and sometimes food. Sometimes I would visit my mentees in hospital when they are unwell. Other times, but very rarely, in their homes with the request of their parents when they are too unwell to make it out, and when the weather becomes unpleasant, we do virtual.

Now, living with sickle cell has meant that there were times growing up where I couldn’t be around humans a lot just because I was either too ill or in a lot of pain to stand company. This resulted in a level of isolation and a need to just not want to be around people as much. A part of me still remains that person. Many children living with an illness feel extremely isolated and generally always don’t tend to be as sociable as other kids which infact could generally have an impact on their self-confidence growing up and we know what a lack of self confidence does to a child and the impact it can have on them as adults. So one of my strategies recognising this was an issue with some of the kids was to develop a great level of trust and rapport with all of them to enable them feel comfortable to discuss whatever they felt comfortable to discuss with me, I had to find ways to manage this and one of them meant providing equal and unlimited access to contact me anytime they had to talk – and I am glad they could do so. I have currently delivered over 200 sessions, a combination of face to face sessions and virtual sessions. As a team, we have probably delivered an estimated 500/600 sessions over the last 12 months. Its absolutely incredible.

I mean I shared tips, offered information, advice and self-management programmes. I provided support to them by going to their schools and colleges to educate their tutors and teachers; I supported the older ones with housing applications. I helped them with their UCAS applications, their university dissertations, their CVs, apprenticeships and volunteering applications, I coached them on interviewing skills, I visited them in hospital when they were unwell, provided moral support and tried to uplift them when their morale was rock bottom. I shared everything within my professional and personal boundaries with them. I spoke to airlines on their behalf, organisations and companies. I got calls from their parents asking for all sorts of guidance for them, whether it was a gap year abroad, or a long haul trip to the Caribbean and how to deal with that or just a call from their parents to say they are unwell and needed to speak to me. I wrote to doctors and nurses on their behalf and advocated for them to authorities for whatever issues they had.

I told them to be kind always, it’s the best karma in the world, to be resilient, to work only within the constraints of their health or pain levels- to maintain an ‘energy bank’ because we are not genetically formed like others. I encouraged them to be kind to themselves, treat themselves right at all times. I told them education was everything and learning wasn’t only constrained to schools and there are other non-conventional ways of learning. I told them its was very important for them to be sickle health literate and that also meant it could be a path and a strong focus for them to grow. I encouraged them to understand their triggers, avoid them and learn how to cope if they are mildly unwell.

I told them health was their number one priority and therefore they cannot miss hospital appointments and have to be compliant with their medication, treatment and doctor’s orders. That without that basic practicality, they may miss a small window of opportunity to be well and do all the amazing things they want to do. I told them its perfectly okay to cancel social engagements if they were unwell, that they didn’t need to please their friends or try to impress boys or girls for attention and that its ok to be selfish for their own wellbeing because hell sakes, they already have a lot on their plates. I taught them to share with others specifically by showing empathy for other kids who may be passing through the same or different health challenges as them. I taught them to be patient with their parents as its never equally easy for parents who look after a sick child. I advised them of the importance of the stories they tell themselves and how that could provide implicit limitations or a world of possibilities for them. I told them they could in turn mentor the younger generation after them.

But ultimately, with love in my heart, silently, in my own space, I would pray for their wellbeing, good health and for their successes- whatever they define as success.

My other 2 colleagues were also just simply spectacular to their mentees – probably different styles but uniquely beautiful. We got an overwhelming positive response from the C&YP and their parents about the programme. Word soon spread across East London about the success of the model through specialist doctors and nurses, parents, the kids and young people, social workers, psychologists, schools and colleges etc and therefore we moved from not just the borough of City of London and Hackney but also all 7 boroughs in East London and even flowed geographically to Essex, Hertfordshire, South London and North Central London. We accepted referrals from all London boroughs.

Even a couple of requests to be mentored came from the United States, which we obviously had to decline.

The best outcomes was to see their sickle hospitalisation rates decreased, they had less sickle crisis, less missed school days, less bed days in hospital compared to previously, increased engagement with services. Over the last year, I have mentored around 15 of them – maybe 13 consistently, my youngest 12 and my oldest now 25–(I actually received 2 referrals this week) and am I proud or what? I am beyond proud of these C&YP because what they have achieved despite their health challenges is incredible. I have watched them grow. I have seen them fight. After work a few days ago, walking home, I spoke to them individually over the phone, and wished them a good festive holiday, whilst reflecting on the major achievements and challenges they have had in 2018. It brought tears of joy and pride to my eyes. I told them to be proud of themselves.

It’s not something I expect many people to understand. Dealing with pain and suffering, as an adult is never great nor ideal but we find ways of coping with life challenges because: Age

Resilience Maturity of the mind Independence

Life experience Acceptance that challenges will come

For some, faith

Others, love and support from family, loved ones and whatever works for most adults.

But as a child, where do you start? We work so hard as parents, aunts, god-parents, grand-parents whatever to consistently preserve the innocence of children and provide the best life for them by showing them unconditional love and an affinity of care. We don’t want them to grow up quickly as a result of any sort of painful experience they may pass through. Because the truth is that they probably will if they did. But you find children with genetic conditions, life threatening health conditions like cancers and other horrible illnesses who go through hell, fighting for their lives – dealing with challenges, they never signed up for or are never really mentally ready for and you as a parent or someone who loves them so unconditionally can feel totally helpless because you have lost absolute control of that self-preservation of their innocence, the ability to protect them from pain and suffering is negated right? I mean I couldn’t even understand why I was sick a lot as a child, why I was in a lot of pain. I felt life was never worth living and I was only created to suffer a life of pain. As an adult, it feels sad thinking about it. The entire thing never made sense to me. My parents understood some of the issues I faced but it was never going to be a case of relatability by lived experience so supporting me through my pain was incredibly hard because they didn’t understand. No one did and therefore there was really no way they could help me – I mean they understood my triggers and protected me from perceived risks and to an extent, I had ‘cotton wool over my eyes’ but it was not their bodies going through pain so really how much could they really do? My care was predominantly medicalised. I mean if I understood half the things I know now about my health then I probably would have had a better time navigating through my education and coping a lot more as a child. If I had a health mentor, one with lived experience, oh bless my soul… But I am grateful for a father who mentally psyched me to look beyond my health challenges.

Imagine having to copy and paste my life experience, model it into a structured guide and provide it as a driving manual to these kids, to shape them for the things that are yet to come, to help them build their resilience, to enable them see life beyond sickle cell, beyond hospital walls, beyond pain- that of course they use that sense of pain and suffering and turn it into an infinite well of strength that whatever, I mean whatever they face in this world, that they can rise above it and keep achieving.

I don’t come to them telling them how great my life is. I tell them about my challenges, every layer of it and how I navigated through them. I share the fact that I stayed well and crisis free for many years, that it made me career driven, I travelled, I started my business, my charity and did so many things in society that I am incredibly proud of, and that it’s absolutely do-able if they find what works for them and I share little tips and tricks with them but I also tell them about the medical complications I have experienced as a result of this bloody condition. No pun intended there. No need being all flowery about the reality.

What makes everything beautiful and makes my heart light up is when they send me these little text messages outlining their achievements, their growth, their resilience after a bad hit. That’s what I thrive on.

The odd texts saying: June, I got 3 offers to university!

I have passed my driving test.

I got nominated to be a public speaker at Ted.

I got a job in Parliament as an intern.

I coach other students June and thanks for referring me to that NLP course.

Thank you for introducing me to xx. They helped me a lot.

I have been well for a whole year – no hospitalisation. Hurray!

I have had mild pain, but I have managed it at home without going in.

I haven’t missed any of my medical appointments. I feel confident talking with my consultants about my care.

I am able to travel without fear and I have been to xx number of countries so far, thank you! One of them actually wrote a blog about her phobia of going away and being on a plane and actually said she couldn’t have done it without me. I cried!

I had a first class June. Yes Lord! (millennials are freaking smart)

I am able to manage my chronic pain and have mustered the confidence and made the first step to go out in the last 4 weeks.

I did a walk for charity at college and I raised xx for xx charity.

I got an offer from college to go to Belize or New York to do work experience. I got a job after you worked on my CV.

My confidence is better and I feel empowered to manage my sickle better.

and so on and so on and so forth. The achievements are endless and when you have sickle, one small achievement is worth everything. Getting out of bed for some is a huge deal. I tell them all the credit is theirs alone.

We get messages too from parents, Teachers, Nurses, Doctors

But above and beyond developing this model and leading on it (which quite frankly I could have done as a consultant in a different situation and be completely detached from it) is the rewarding feeling of fulfilment, pride and honour mentoring these C&YP and watching them grow from strength to strength, achieving, some having less sickle crisis, others more empowered to cope with it, all of them doing so brilliantly with their goals and their lives as they mould it.

When I was appointed as lead mentor, I had a slight anxiety about my involvement with children (particularly the teenagers) given that I had never raised one. I am not a parent. I am just an aunt and a god-mother. Moreover, as much as the generational differences are not as stark as I thought, I feared for relatibility. They wont budge because they consider anyone remotely older than them ‘ancient’. But they all warmed up. I carry a motto that we should all be open to learning from each other regardless of age. There was mutual respect. I depended on a few comforts: that

I love children, I have nieces and nephews and several god-children whom I love so much. That I could support young people through a journey I have lived and share everything I know.

That I worked with crazy teenagers in London for a few years earlier on in my career (difficult ones too who were mostly offending and reoffends)

That I support a friend to co-run a charity to support BME teenage students who are aspiring medical doctors.

And that I formally coach and mentor upcoming managers in career. Quite dynamic experiences.

So when I logically travelled through those accomplishments, which of course were challenging without a doubt and coupled with the fact that I had formally trained as a coach and mentor, my anxiety died a natural death. Now, I share all of this not to feed my ego, to self-gratify or seek your praise to be commended because it has never been about me. Its about the young ones I serve. What has been ABSOLUTELY rewarding other than the 60 plus children and young people who have entered the programme is the fact that I was presented with an opportunity to use a condition that has affected and impacted potentially every aspect of my life for 36 years, the ability to turn it around on its face and inspire (I hope) many children, young people and their families to just live a life of happiness, to not view a health condition as a boundary that stops them from achieving anything, to strive towards a greater quality of life, to maintain good mental and physical health and to achieve their life goals – education being the foundation of their lives because many haven’t had the opportunity to complete their basic education because they have been too unwell to.

That’s exactly what I have always wanted. I have an infinite desire to give more, to aid, to share, to support. And beyond the mundane and material accomplishments, has to be the profound and life changing. This is one on the list my legacies, one, I will hold dear to me even when it’s all over. The sense that I could share all I had. That I could give something to a young person to shape them regardless of my perceived and actual limitations is worth everything.

Because if we all don’t recognise the need to change this crazy world in any little way we can, make another human being's life even better, then we live without purpose. I am thankful. #sickle #nhs

The model I created will be a lasting legacy

Anticipated Cycle of Stars

I am shades of midnight, shards of the same galaxy collapsed and contrasted to tiny little balls that grow like eggs not subsumed by Mars quakes. I am faulty genes, x-rays, heart scans, and red cells insufficient. I am sexuality in a world yet to be explored by I and me. I am a jar of dry camomile leaves turning to shades of sunlight spreading over the river leaving spaces for evening lights. I am petals of the stars waned to the fragrance of flowers travelling with wanderlust from world to world. I am insights from colours of black, white, golden, everything. I am a sanctuary of solitude, edging on certainty. I am the oscillation between feeling brilliant at birthing my art and really quite derided at churning consistent literature.

I am the east London girl left with derelicts of poetry originating from Alfred Hitchcock films. I am the walk by the sea that gives the feeling of the wind coming off the waves. I am the travel between seasons on railways to off-the-beaten-paths destinations through countrysides and beyond to flea markets collecting memories, soul and travel tchotchkes. I am Sunday breakfast and tea in bed, buried inside heaps of sheets, using body warmth for shield. I am pure joy, one whose heart howls with laughter and a face whose grin is as silly as the scowl of a Cheshire Cat with a hissy fit. I am a numismatist and I am the girl who collects stamps and inherits vinyls owned by my father from the 1960s. I am coffee without cream. I let the days and the weekends amaze me like my time in Hamburg. I am the random stroll to the local Signorelli bakery to have an almond croissant and fresh Italian latte and a nice chat with the transsexual lady. I am a creation inspired by the likes of Thomas Hardy, Francoise Sagan, Zadie Smith, the humour of Lucy Mangan, and the wit of David Sedaris. I am her, ambivalent between jaunting between rural and suburban villages, bustling cities and seaside towns. I am soul inspired songs by the Upsetters and likes of Otis Redding’s ‘cigarettes and coffees’. I am stuck between layers of diversity notwithstanding an identity of complexities. I am the cheateu in the north of Bordeaux where we did that thing and the grandfather clock chimed and we laughed so hard, we choked. I am excitement yet forgettable like the confetti that drops to the floor after weddings. I am midnight in Paris and late night strolls on 57th and 6th in New York. I am a result of the birth of a post term delivery caught unduly unprotected by the amniotic fluids of mother. I am layers of skin shedding in green and yellow slime because mum had me at the 11th month with a fontanelle that retained ground rice which she ate when she went into labour. A fontanelle that never left and each time I braid my hair by someone new, they tell me of the dent as if it was something new I only just discovered. I am June created on the first day of summer like Marilyn but could have been April beautifully bore in Spring like April in the TV show, ‘Mistresses’. I am the heart heaved at a belief swooned towards a soul immortal. I am one who never wants to stop making memories with you, my ‘buh’. I am ménage a’ moi and I am the Pas de deux as long as I am joie de vivre, then la vie est belle. I am altered by indie and foreign films that tell elegantly of French girls admirably in love like that of ‘Jeune and Jolie’ and ‘Blue is the warmest colour’. I am the smell of my ‘babuska’s’ saliva plastered all over my palms as she wipes them clean with her wrapper cloth sealing them in prayers for good destiny and good health. I am the crux of the patron of St Andrews representing Bajan maidens, Danish singers, Scotish spinsters, Argentine migrants, shell shocked survivors, women wanting to be mothers, gouts, jaws and sore throats. I am a spanner in the works aggrieved by familiarity and piss taking. I am all there is, transported in my nudity, prayer and thoroughness, clear and bright like a snowy Christmas sunny morning. I am June

Anticipated Cycle of Stars