Milestones and Ramblings of the last 9 weeks

A few times in the last couple of weeks, I had felt a little disillusioned. I had a few ‘woe is me’ moments and probably cried once or twice quietly in the bathroom at work. Not because anyone upset me but because I had suffered a bout of extreme fatigue and had been absolutely overwhelmed with work to my bones, knees and soul. I felt silly crying but better after. Its felt like certain days I have only been able to move as a result of gravity. I could barely keep my eyes open most days. I am a coffee enthusiast which is really terrible for my condition but life is unfair so I have decided it’s one thing I wouldn’t give up. So I have had more and more coffees recently. 
I questioned the purpose of work and what days like the last couple of weeks meant. I had to adopt what I call my ‘robot girl mode’ and I only slip into that mode when there is a conscious need to do so- like returning from a lovely holiday and landing Heathrow. It’s the ‘switch’! 

This is coming from an extremely hardworking person with the craziest work ethic I could possibly muster. I am usually tired as a result of my anaemia but I tend to get on with stuff and undertake tens of projects at the same time and achieve the end results. But when I say “I am fatigued”, I have reached rock bottom physically. I rest twice as much as I work but there are times when I cannot physically find any time for rest because I compete with myself to achieve great outcomes for conflicting priorities. 

I am contracted to work 37.5hrs a week but I have done some mad hours recently, ranging from 50hrs a week to 60 p.w not taking into account other hours I do outside my main employment. 

For a lover of work-life balance and a girl who loves to play and work hard, it’s been extremely difficult to function out of that comfort zone of mine. 

I really enjoy spending time with people I really really like. It’s important to me to do so because I have learned that life is too short and so when I feel like one part of my life (my career- which is equally an important part) is taking me away from being with people I love, I start to feel out of touch with life. 

My career is important to me. Afterall, we all spend time building it and working hard. But my dad always says you want to look back when you have peaked your career and give yourself a good pat on the back for the terrific things you have achieved because people will talk about you and acknowledge your work when you do great things. However, he says always continue to build those important relationships and never put work ahead of anything. Balance is a critical factor to my existence. 

I need a great career to enable me achieve my infinite (expensive) bucket list. 

I never seek validation for my work but everyone needs some motivation from the people who matter in an organisation. I got an amazing appraisal yesterday. Someone even used the f-word to express an adjective that put emphasis on how brilliant she thought I was. I burst into laughter and I felt so damn good. 

But this came with its limitations as I haven’t spoken to Mum or Dad as much as I do and would love to. Haven’t spent any time with my brother recently. I crawl out of bed at ungodly hours of the morning to get to the office early and I return home after dinner time. This means I have barely spent any time with my buh either. I rarely even say goodbye to him in the mornings as I hate the thought of waking him up that early so I tiptoe between the bathroom and bedroom and end up creeping out of the door. But I am a lucky girl because I know I would have ended up skipping dinners if I didn’t have him. The thought of making dinner after leaving the office at 8pm never comes to mind. 

I haven’t spoken to some of my best friends in weeks. Sonia, Jermaine, Ijay, Sandra, and lots of loved ones. 

I mean weeks…

I speak to Sonia nearly every morning on my way to work.

I haven’t seen my god-children or had any headspace for them recently.

My sister has been the only one sort of very engaged in this madness and somehow we still get a chance to speak or text daily, no matter how monosyllabic and vague those conversations are. I gave her the heads up weeks before I delved into this intensity so she was well aware of my situation. 

I have missed working out recently, haven’t had my meditations or any sort of wellness recently. 
I am behind on admin functions with my mentoring programme and there are more requests for mentoring coming up. 
I missed the board meeting for my support group this week, forgot to attend an event I was invited to at the All Party Parliamentary reception, haven’t opened my posts for weeks, behind on my emails, my blogs, articles, books, tv series, movies, other personal projects and planning for my holidays. 
But I know on 31st October, things will settle and it will be worth something beautiful in my career. 
Over the last 9 weeks, I have written the maternity transformation strategy for the whole of East London (all 7 boroughs) and this will potentially come with investment from the Department of Health/Treasury for the local population to transform maternity services for local women of East London. The outcome for me is that we receive at least half of what we require (£). The report will be submitted to NHS England and will be widely published. There are 6 providers of maternity services in East London. This should you give an indication of the level of work involved. I work for 20 organisations as a partnership and maternity is just one workstream I lead on. 

But in all of this, the most important thing is the outcomes for local women including myself (perhaps in the future) to have the best quality of world class care from maternity services esp given that I reside in East London, I hope I can benefit from it. 

To top it all, the highlights of these terrible weeks came with these emails from the lovely ladies I work with (quite senior people, I must add) including the most amazing feedback from my exec lead, a woman who isn’t that easy to please. She said, “June, this is an amazing piece of work and will be a positive footprint for other workstreams”. 

I take pride in my work.

Today I caught up with most people I haven’t spoke with. I spoke to Ijay my friend, text Juno, saw a movie with my brother, text Sandra to arrange a meet up, had a lie in with my man and had fresh hot croissants and latte brought to me in bed! Spoke to Dad, text Mum and feel like I am back to life. 

After I press send on 31st October. I would be a happy girl looking forward to her long haul holiday and an amazing Christmas and start to a new year. 

Note to self: Hard work and determination is an amazing thing but never lose yourself in work…


Angel Jasmine 

The night stars shone so bright
It transpired to an epic night
Filled with purity of love
A reunion, a passion
Jasmine just like the infused jasmine
Fresh fragrance sweet and beautiful
The morning fetched my heart a river of tears
Death ever in its cruelty
Snatched my beautiful Jasmine flower away
The one my hands never held
The one my eyes never beheld
Her baby skin whose fragrance my nose never smelt
Her innocence
Her growth
Her frailty
Her lungs
Her beauty
Her gentility
Her little life
Taken away
When she stopped breathing
When she gave up
When the doctors couldn’t save her
For the 1st year she couldn’t live
The birthday she couldn’t see
And the last day she couldn’t die
I watch as her angelic soul elevated to heaven
Where peace and love knows no bounds
Where love and light feeds her soul
Where perfection exists for the little ones
Where her body lay to rest for eternity.
Until I meet her someday in heaven.
Sleep beautifully baby
I love you Jasmine. x
28.02.16

Saturdays are for Shakespeare 

At Marylebone station, just after coffee and breakfast at Patisserie Valerie, we board the train on platform B, heading towards Birmingham. At around 11.13, we change platforms at Dorrige for the London midland train to Stratford Upon Avon. A very convenient train ride I thought, seeing as it bought my sister and I quality time to catch up and gossip about everything. Moments like that can be very difficult to achieve with this crazy general addiction to phones, gadgets, tv and a very busy life we all have. 
We FaceTime her kids and I end up speaking briefly to my cute niece, nephew and my mum not without noticing the imp seated opposite me who wouldn’t leave me any leg room and thought he would spread his legs and intimidate me to coil into terror on my seat. I stamped his feet and said sorry. 

Arrived SUA at approximately 11.40. Wandered around the old town and explored the vintage shops. We bought books from the Blue Cross charity store. I got travel books and my sister got my niece, more books!!

We head to Shakespeare’s birthplace on Henley street where we had a deserving tour of the world’s greatest literary icon’s home and family heritage. 

What a beautiful experience and an honor to visit William Shakespeare’s home. A legend whose works I buried my brain deep and endlessly for years studying and trying to figure it all whilst in university. 

We do the entire home and galleries. It was absolutely rewarding and refreshing. 


We head to a restaurant in the old town square area for light lunch. I had a lentil and carrot soup served with some bread and some peppermint tea. My sister had chicken and chips and a cappuccino. Don’t ask me about the combination of flavors stemming from my meal. 

We walked to the well renowned butterfly farm taking in the breathtaking scenic views of the town and lakes. Again, such a fascinating experience of the butterflies filled with nature, colours, and beauty in its finest. I must add it was very warm in the flight area but it was bloody worth it. 

Loved every moment of the fame. Is it Sod’s Law or could I tag it as the highlight of my day when a butterfly decided to clasp onto my jeans for nearly 10 minutes and wouldn’t fly away even after gently nudging it. Oh wow! It felt wonderful. I was loved by this butterfly. 


We then head to the Grosvernor Hotel just around 0.4 miles from the farm for Bubbly Afternoon Tea. It was prebooked weeks ago in anticipation of my sister’s visit. Looked forward to it. 


Anyway we tried teas we had never had before. We went for the Royal bouquet, a caffeine free tea with lots of rich fruity flavors which is meant to be enriching and nourishing, 2 glasses of prosecco, (thank you very much!), scones, some fine hand-cut sandwiches and all sorts of sweet treats that we barely touched. It was great! No it wasn’t. 

Not only had my sister and I gone into this monstrous argument where we were (regrettably, I must add) raising our voices to an extent that the staff approached us to ask if everything was ok but the hotel was actual shit. There was a wedding happening as well so it was a little chaotic. Definitely not my class nor style. Seemed very dull and disorganized. The tables were all untidy which put me off already. The staff weren’t so friendly and I just got bored. There was no ambience whatsoever. If it’s not Claridges, Harrods, Ritz and other top class high tea rooms in that category, never again will I sit in a low class hotel to have tea. I may as well drink fine tea in the ambience of my own home. 

But I had to use the tea voucher as it had been gifted and I activated the voucher months ago which then left me with a redeemable expiry bracket. 

Stuffed and in need for air after two pots of tea and two glasses of prosecco, we head out. 

At 16.20, we walk back to SUA station. No, we actually ran as we were running late at this point and had the 16.40 train to catch to Leamington Spa for a change to London Marylebone. We made it. 

Through each station across the Warwickshire geographical footprint lay shades of generally grey, miserable and rainy England. The train ride was bleh and they were a bunch of arseholes who boarded the quiet area and roared the whole time. 

Oh well…

But overall, we were honored to have had this beautiful experience and ticked one or two things of the bucket list. 

As we couldn’t make it to the Anna Hathaway cottage, it would be at least the one singular thing that will certainly bring me back to Stratford Upon Avon. 

We arrive London Marylebone at 18.50, through the gates and to the Bakerloo line, home bound. 

Yves Saint Laurent; the legacy of art stamped in history 

The preservation of the legacy of one of fashion’s ever greatest designers. 


The one and only legendary Yves Saint Laurent. 



Marrakech 

It rained relentlessly for most of the first week YSL spent in Marrakech. This relatively rare event began on the day the  fashion designer and his partner Pierre Berge arrived in February 1966.

RIP

Pierre Berge passed away aged 86 in his sleep last Friday, 8th September at his home in Saint-Remy-de Provence. 


The concierge at La Mamounia hotel assured them the weather would improve and after a few days, it cleared, the sun shone, the scent of jasmine drifted through the warm air and the snow-capped Atlas Mountains appeared in the distance. 

*****************

Marrakech, a city after my own heart. 

YSL, the talented legendary designer. The significance of my birthday and his death has always kept me close to his story and his life even after death. 

The Film; Yves Saint Laurent 


I saw Yves Saint Laurent in 2014 with my brother at the Stratford Picture House Cinema. It’s a French narrative and recollection of the biography of YSL made into a dramatic film, directed by Jalil Lespert and co-written with Jacques Fieschi, Jérémie Guez and Marie-Pierre Huster. 

The film is based on the life of Yves Saint Laurent from 1958 -2008.

The film depicts the milestone of YSL after his dismissal from the House of Dior, Yves Saint Laurent (Pierre Niney) with his lover and business partner, Pierre Bergé (Guillaume Gallienne) and how he builds a formidable fashion empire.

It was also an insight into his life as an open gay designer living in Paris and some of the challenges he dealt with i.e drug use etc.

Film critic reviews were not great but hey, it was a good watch. 

Have I stressed my love for YSL and Tom Ford? The pair of them = phenomenal.

2017 seems to be a year of celebrating YSL’s life after death. Wasn’t it earlier this year, I was looking online at the exhibitions of YSL’s “Perfection of Style” at the Seattle Art Museum.


Last week wide eyed and in lust at the new (un)affordable Supreme Bouquet fragrance which must join my perfume collection before the end of the year. 


Now I stumble upon ‘The Pursuit of Beauty’ on the British Airways Highlife Magazine, inflight and inbound to the Isle of Man over the weekend.

********************

For Yves Saint Laurent, a visit to Marrakech in 1966 was the start of a love affair that endured his entire life. 

Now, a new museum paying tribute to the late designer opens this autumn. His story will reveal reports of those who witnessed how the North African city inspired one of the greatest couturiers of the 20th Century. 

The new Musee Yves Saint Laurent will open in Marrakech on 19th October 2017.


But wait! It’s not all!!!

The Musee YSL Paris also opens in Avenue Marceau on 3rd October. Oh, so Paris! 



Dedicated to shedding light on the life of the French designer, the Paris museum will open the doors of Yves’ former studio, whilst the Marrakech space will remain in the Majorelle gardens and will include a library, a concert hall, and a sprawling exhibition space inside of a terra cotta building. 

You know what this means, for the culture and art enthusiast? 2 additional bullet points on my bucket list. 

” I wanted to return to a true femininity by accumulating les and ornaments which, of all time, helped to charm women. ”

Yves Saint Laurent


He did it through this legacy of preservation.  

I am ultimately one of those women charmed by him.

Reti-No-Pity; I rolled my eyes so much, my brain hurt 

One of the things I consider responsible, is the ability to act proactively and positively on the basis of knowledge. 
Many doctors and clinicians would know about diabetic retinopathy really well. 

Many members of the general public would. But they may not have ever heard of sickle retinopathy. 

People would generally get what you are talking about when you mention sickle retinopathy because of the known association with diabetes and vision.

1 in 10 people are diabetic. See? There is power in numbers. 

Majority of your Type 1s will be screened regularly for diabetic retinopathy. 

The last consultant who saw me told me if I was diabetic, they would be genuinely worried about my diagnosis. The fact that there is a risk that vessels in the eyes could burst and lead to hemorrhage causing sudden loss of sight is scary. Fortunately, this isn’t always the case in sickle. It’s very rare for a burst and vessels will tend to scar off.

The first time retina haemorrhage was ever associated with sickle was in the 1930s. However, it wasn’t until the late 1940s that scientists and clinicians were able to understand the underlying mechanism of sickle retinopathy as it was later identified that the occlusion of small vessels which were caused by the sickling process resulted in changes/ damages in the retina. 

Ha, the ‘eureka’ moment. 

My diagnosis is non-proliferative sickle retinopathy. 

*****************

Every year I ensure I get an annual eye check on the high street to ensure my vision is fine and there are no major risk factors. It’s the responsible thing to do right?

The silly and unsettling thing about checks is that 9 out of 10 times, there is likely to be a finding that you are not looking forward to but early diagnosis is a powerful thing when you have a complicated disorder such as sickle cell. It’s a life saver. 

The eyes; one of the main 5 human senses. It’s the core to calibrate, to express, to communicate, to process signals and messages to the brain, to see danger and be able to flee, to educate by reading, observing, sensing, it’s the core sense to enable living, to enable life and reality. 

One cannot underestimate the power of vision. Good vision. 

So here is my narrative…

The latest eye test I had in Spring 2017 identified some changes with my sight and I was re-referred to medical retina at Moorfields Eye Hospital after being initially discharged in 2015. 

I say re-referred because I was under their management but I still cannot understand why I was discharged in the first place. 

Someone at risk of retinopathy, you would think that I would be kept on their books right? No!

They probably thought I didn’t need to be followed up regularly because there were no significant changes to my eyes. But actually, they were and this is where some clinicians get it wrong and most times to the detriment of patients. I work in the NHS so I get the fact that a reduction in the number of follow ups results in savings. However, when a patient is considered clinically high risk, the clinical decision to discharge them can often be the wrong move and that’s where I felt like the decline in my sight was missed. 

The initial referral to Moorfields stemmed from symptoms I had started to experience in 2014 with blurred vision, blackouts, migraines/ headaches etc. My then consultant made a judgement based on my reports and advised it was wise to get to A&E at Moorfields. 

They discharged me after a few follow ups. 

A year later, my high street optician saw what he described as a ‘birthmark’ at the back of my right eye when conducting an eye check.

He asked me if I knew about this. Of course not, I had no idea! How was I suppose to know about a birthmark at the back of my eye. It’s a ridiculous question. 

Unbeknown to him or I, the birthmark was a lumped vessel resulting from a past crisis probably when I was much younger. It was situated in a non-peripheral area in my eye. This means it doesn’t necessarily impact on my actual vision. It was sickle retinopathy. 

I have been followed up since then at Moorfields and today was an eye opener to what real patient experience can be like. 

Anyway fast forward to today’s appointment at the eye hospital, here is a recollection of my morning. 

My appointment was for 8.30am

I arrived Clinic 12 at 8.15

It’s past 8.30 there are no Receptionists out there to attend to patients.  SMH!


8.45 The nurses call me for a vision and eye pressure test including general observations and assessments. 

8.54 I have been given two stingy eye drops to dilate my pupils resulting in some discomfort. I clean up the residue of drops and my mascara leaves its own signifying residue on the tissues.

Nurse sends me out with a green card to medical imaging. 

8.57 I walk over to hand over my green card to medical imaging for my scans and photographs. 

While I wait, I fetch some water to drink next to the coffee vending machine. It’s cold. I sigh. 

There is no mobile network at the eye hospital. I am bored. 

I wait while I sit writing some of this as my pupils dialate and my vision slowly blurs into a cloud-like vision. 

I want a coffee and a croissant badly but I can’t find my way through the corridors. My vision is almost gone. The walk to the imaging rooms are not up to 5 metres from where I am sitting. It’s ok, I thought. 

I also wonder when I will ever stop sitting in hospital corridors waiting for appointments. It’s not dejavu each time I am there, it’s real. 

I wonder if everyone here who is black in Professor’s Tufial’s clinic has sickle. I am pretty certain 80% of people here have diabetic retinopathy. 

9.20 Doctor calls me. However, scans haven’t been done yet so she orders an additional scan which she thought was more important than what the nurses ordered. 

She tells me she will call me again. 

9.35 I have my OCT scan. 

This involves staying still and looking straight at a bright shiny green X like shaped light located right in the middle of the machine as a red line goes across it for 10 seconds. 

My eyes water from staring still and being wide eyed. 

Sigh

9.37 more photographs taken at the Laser Suite. This involves titling your head to one side of the machine and looking at circular lights with eyes again, wide open and before you know it, Click, Light, Flash!

9.43 Back to Clinic 12 waiting to be called. 

9.50 Doctor calls

More examinations. I realize she must be a junior doctor as she says she needs to speak to the consultant.

For Petes sakes I thought! I used a rude word, make no mistake!

She admits to not knowing a lot about sickle retinopathy and I wonder to myself, why waste my time? I was actually scheduled to see a consultant as you can see from my letter. 


Anyway she does her thing and goes back and forth to speak to the consultant for advice and finally comes back to order more tests. 

2 additional OCTs. 

Really? I was irritated at this point. 

She explains that the consultant ordered the additional scans because of the reports I gave about my labored vision. 

She explains that these are more sophisticated tests which will give a true and detailed indication of any risks to my vision. I was grateful for this and for the fact that I can access the best technology for my treatment in one of the world’s most renowned eye hospitals. So I became less irritated (only for 10 mins).

10.23 back to the Laser Suite. This scan involves a similar bright green X like light for focal view. It’s an OCT as well. 

10.32 my next scan involves looking straight and still into a blue circular light for focus whilst a red line scanned horizontally through it. 

“Look at the center and keep your eyes on the blue dot” he says. 

Click!

He scans both eyes.

Next stop, another scan, same machine, brighter lights with additional lens added on. 

Focal vision for photography.

Again, Click! 

I am mentally and physically exhausted. 

10.34 back to Clinic 12, again, waiting to be called back for the umpteenth time by the doctor. 

These scans are great and I am truly fascinated they are able to give an accurate 3D view of any issues in the retina which old technology would not have been able to support. It is indeed phenomenal but this clinic is so disorganized it’s unreal. 

11.10 still waiting in Clinic 12. 

11.25 I am still waiting for the doctor. I walk up to reception to ask them to let the doctor know I was in a hurry to get to work. I am terribly irritated at the length of time spent and I become claustrophobic. 

11.27 I got called in! Phew! Finally! 

She tells me that upon examination of those additional scans, there are no major changes to both eyes from the last diagnosis.

Yay! 

However, they will continue to monitor me and will see me again in 4 months because changes can obviously occur in a short time frame. 

She tells me that the OCT scans will serve as a baseline for future diagnosis and the decision to treat where appropriate. 

I am grateful for the ability to challenge my clinicians and ask questions about these things and working in the health sector gives me insight to challenge my care. 

She also asked me to visit my optician again to check my glasses as the scans don’t show any reason why there should be a significant visual change. 

I was asked to bring in my optician’s report at the next appointment. 

I say thanks to her and she apologized for the long waits, I take a photo of my eye images indicating the sunbursts. She smiles at that singular action with an expression that read on her face “this patient is a pain”! 


(Left and right eyes showing the sun bursts)

I say goodbye.

But with a strong conviction to give all the staff there the middle finger for keeping me for nearly 4 hours in the basement of the hospital. 

It was a terrible morning. But I am fine. 

11.36 I exit the hospital. 
***(For anyone who has sickle cell, please get regular checks for symptoms of retinopathy) 

Nothing beats feet 

On Wednesday, 29th March, I had the last of 4 FREE sessions of reflexology treatments carried out successively over an 8 week period. The sessions were offered to me by Denise, my lovely and very expert reflexologist. She is expert and I will tell you why shortly. 
In very simple terms, reflexology is the therapy of the feet. 

According to the Association of Reflexologists, Reflexology is a non-intrusive complementary health therapy, based on the theory that different points on the feet,lower leg, hands, face or ears correspond with different areas of the body. 

So basically one’s entire anatomy can be reflected on one’s feet via reflexology.

This year, I have had quite a few ‘firsts’ and experiencing reflexology was one of them. 

Denise was looking to see how reflexology treatments can significantly improve the lives of people living with sickle cell. There is no real evidence of these treatments having significant effects on sickle cell. So I thought it was a brilliant idea that she was exploring this. 

Denise offered a number of Hackney sickle patients the free sessions and I was one of a very small few to take on the sessions. I am not from Hackney but utilize Hackney health services. 

Denise will be writing up a research report about reflexology in sickle cell and hopefully I can feature as one of her case studies. 

On my last session, I was discussing with Denise about potentially accessing further treatments and how this could do a lot of good for my blood flow. 

I expressed how reflexology has helped me and couldn’t have expressed it enough but some experiences are difficult to express or write especially on a feed back form – of course her clients will have to do this for her service as part of her best practice standards and her evaluation framework. 

So I thought to write about it on a very personal level. Afterall, thats what I do right? 

So focusing on the last session, as that’s the one my memory seems to be quite in tune with. I have had to test my memory on this one. 

I arrived at her lovely house/ studio in North London. As always she made me feel extremely comfortable on the massage bed, tweaking relaxation positions, the fragrance in the air filled with lavender and a citric mix. Subtle jazzy tunes in the background, we exchanged pleasantries and I went into the zen mood. 

Denise used oils with elements containing sage, lemon, geraniums and citrus. She used a sweet orange balm also. 

These oils are meant to be great for circulation, the lymphatic system and the digestive system. 

As sickle cell affects the flow of oxygen and the blood cells get stuck in the blood vessels, one can see how this therapy can benefit people like me. 

So back to the oils, what this means from a zen point of view is that those flavors of oils can in turn help to lift any feelings of depression, hurting emotions and anxiety. 

People don’t care about these things but I do. Wellbeing is extremely important to me. 

I know it definitely helped relax me over those last couple of weeks as I was starting a new job and taking on a new role in my career and believe it or not, anything that takes me away from my comfort zone creates a low level of anxiety and this is coming from someone who flirts with change. 

Throughout my treatment, Denise was able to see my anatomy and assess my physiology just by looking at my feet. To be honest, at first, I thought ‘what a load of shit’ after reading about reflexology online but she changed everything. I am not a very cynical person and tend to have a very open mind to a great number of things. 

I have always believed in having an open mind and positive consciousness to everything one does. It makes a whole lot of a difference with injecting positivity and light into our lives. 

What did Denise see?:

She saw I had issues with my lungs in the past. I confirmed to her I had quite a few acute chest syndromes and bad pneumonias which nearly took my life. 

She confirmed a high level of toxins in the my body from eating lots of carbs. I confirmed I ate toast most mornings, potatoes with my proteins, pudding some weekend evenings, and that I liked my mid day snacks and the odd doughnuts. She asked me to get rid of that diet.

I did. 

For 2 days or was it 2 minutes…

LOL

My partner totally agreed and I told Denise how my partner was in turn trying to get me a way from snacking unhealthy things. 

Denise literally asked me to high five him. After much struggle, I have cut down on carbs, bread and stuff like doughnuts and shit like that. 

Note the words ‘cut down’

She saw I had abnormal changes in my reproductive areas and I confirmed to her that that week I had received some results after my cervical screening about abnormal cell changes which obviously freaked me out. The changes had occurred due to my low immunity and the treatment I had being taken for my sickle. 

And finally she was able to detect the issues I had with my eyes – sickle retinopathy and that was when I thought, the woman is a freaking genius! 

She is brilliant at what she does. 

So yes that was by initial contact and experience with reflexology.

Did I mention that the moment Denise touches my feet, I fall asleep on the massage bed until she gives me a gentle tap to wake once she has completed the therapy. I look at my watch and I wonder where all that time went? I had been sleeping for 70 mins, deeply I must add, snoring and 🤤 drooling like a moron.

That’s the effect she has on me and it would be interesting to know about others. A friend of mine attends her therapy and also speaks highly of her experience with Denise’s treatment.

It’s always divine after she is done with me. I feel lighter, relaxed, my circulation is perfecto, I have no anxieties, I am generally just a happy girl for the next couple of weeks and that’s what massage therapy and reflexology does for me. 

Denise is rare gem. 

I have since continued my therapy even after my four free sessions and it’s been bloody brilliant! 

My net session is tomrrow and it’s something I always look forward. I consider treatments like this, gifts to my body and soul. 

Tonight’s menu 

At home…

Sea bass stuffed with dill with rocket avocado salads and home made French dressing served with sautéed seasonal potatoes and a glass of chilled Tannat, 2013 Uruguayan white wine. 
#lovemylifeandmyman

Dejavu 2017 and others; the captivating art of Lisa Yuskavage

Yesterday I matched to my favourite hang out spot in London – Mayfair, home to the most affluent of society. I went to go see a gallery exhibition which I had read about earlier in the week on Timeout London. 
I had never heard of Lisa Yuskavage and saw the synopsis of her work was being exhibited at the David Zwirner gallery both in London, Grafton street and in New York. 

Of course, as a lover of art and culture, I decided to jaunt to Mayfair to see her work. 

American Lisa Yuskavage’s work was captivating. There was a private view at the gallery on 6th June and then became open to the public from the 7th June to 28th July. 

There will be a guided tour of the actual exhibition on Mayfair Art Weekend at the end of June. 

With a rather contemporary style,, Lisa has developed her own genre of portraiture in which lavish, erotic, angelic and at times grotesque characters are cast with fantastical landscapes or domestic spaces. 

I interpreted her work as a way of breaking the norm which has conventionally body shamed women in modern generations. Her work was so visually paradoxical, it enabled me to recognise the art of the male and female human anatomy, erotic nuances and nudity. 

There were two floors exhibiting Yuskavage’s work in Zwirner’s gallery, with around 12-15 portraits between them. Very sparsely laid out with access to mental and physical headspace to take in the interpretations of artistic meanings. 

According to the synopsis of the exhibition, it includes several works that continue Yuskavage’s exploration of the dynamics of intertwined couples, while also furthering her interest in using colour as a vehicle for ideational content. 

Begun in the 2000s with dual portraits of female figures, she has in recent years created a series of symbolic depictions of a female and male couple. Their relationship appears determined by carefully selected colour harmonies or contrasts- in some cases, one figure is cast by vibrant hues, while the other is in neutral tones. 

Probably unnoticed by many viewers, the women were depicted to be loudly more dominant on the scene than the men. 

Other paintings in the exhibition depict single women or groups with psychological narratives of tenderness and tension likewise described by formal elements within the compositions. 

Lisa was born in Philadelphia, Pensilvania and I assumed possibly from Eastern European descent. Since 2005, Lisa’s work has been represented by David Zwirner and this particular exhibition has been her first with David in London. So there I was attending her first debut in my beloved city. 

Her work continues to receive positive appraisals and has been the subject of solo exhibitions at institutions worldwide and has lectured on the subject of her own work as well as other artists including Giorgio de Chrico, Philip Guston, Francis Picabia and Edouard Vuillard whose specific work I am familiar with. 

Bur what will make it more memorable is the fact that on a hot summer day in London after sweating like a pig on heat on the Central line and walking 10’mins to Dover Street from Oxford Circus, it was the most welcoming respite to a cool air-conditioned beautiful gallery with shades of light and space. 

The beautiful things are sometimes free. We just need to find them. 

Longleat was everything 

What a beautiful weekend at Longleat with some of the most beautiful animals in the world, a safari of all sorts of cats and birds, a well kept land of conservation, crazy land mass, a taste of exotic English Heritage, mingling with the Aristocrats who own this mind blowing estate, lots of education on 17th C history and the legacies of the Viscounts, food stalls and Nadia, the chef in the building, the sophistication of Lady Emma’s exclusive afternoon tea and that fab vintage china tea set, touring Lord Bath’s castle and more importantly enjoying time with my lovely Carol who was treating me to a belated birthday treat. 
My Carol 😍

I have to mention that one of my highlights was when the beautiful Viscountess, Emma Weymouth whom I absolutely adore and admire stopped to say hey to us and told me after I had obviously complemented her, “you are absolutely beautiful”. 

Awww, bless her. 

Of course I blushed…and thanked her. I told her we were booked for her exclusive tea and she said she would meet us at the Orangery for a meet and greet. What a lovely young lady. 

She actually got married at the Orangery. The modesty though…

A remarkably beautiful soul and even more stunning in real life. 

And to end the weekend was steak night for dinner with my love. 

I am blessed…

I must say it’s always refreshing to have a taste of the country with limited or no access to network.

My memories of the little old town that inhabits many retired pensioners, Warminster…

Longleat…


In light of today’s happenings

When the Thai woman at the bar says to us in Chiang Mai…”Sorry we cannot serve any more beers today after 10 because of the Erection tomorrow…”
Silence 
Confused face 
Errrm…
Awkward…
She continues…the erection, we have the erection tomorrow?
Silence…
Oh right…
Duh
Right, you mean election?
Yeah erection…
😂

Manchester x

Last night, I was talking to my ‘babba’ about how I am providing expertise to NICE – National Institute of Clinical Excellence.
I was due to travel to Manchester in the morning of 23rd May. 

He read my little blurb/biography which they had put together together with other experts across the country and he said ‘I am really proud of you honey’.

We went to bed…

I woke at 6.07. Had a 9am train to catch. 

Kissed him good morning. Jumped into the shower. 

As I applied conditioner to my hair, whilst he was having a ‘lie in’, he said ‘darling, there has been an explosion in Manchester, can you switch on the tele’.

He saw the breaking news on his phone.

I switched on the tele and there it was.

19 people dead and just under the hour, 22 confirmed dead, 59 injured. 

I was numb.

‘What is this?’

This is not the sort of news anyone wants to hear soon after you have just woken. 

Shell shocked and standing there like a lemon, I was silent. Quite disconcerting too, I must add. 

‘Are you sure I should go ahead with this trip?’

‘Of course’ he said, ‘until you hear otherwise’. 

Right.

So I jump back into the shower. Get dressed. He made me breakfast and I made my way to Manchester for the very first time. 

Got off at Piccadilly Station, (thankfully, it wasn’t closed) and walk to NICE offices. 

As I strolled there, I whisper in my heart, fear shall never prevail over bravery. Terror will never bring us down. Fear shall never win over acts of kindness and acts of service. 

Today, I have taken annual leave and I am providing an act of service.

I am thinking of all the first responders who continue to serve this country and save lives when these bloody attacks happen. 

But firstly and more importantly, not without holding these innocent lives taken away from the earth in my prayers and my thoughts. Praying that their families who are clearly and utterly devastated by this terror attack are comforted and can muster some strength to go through this horrible phase.

I will never understand the evil happening in this world.

For those children and young people, who never got to live life and see their potential, it has to be the most devastating thing any parent can go through. My heart is broken for them. 

Manchester was evident in the spirit of love, bravery and unity today. People out and about their day to day stuff. 

Hope.

It turned out to be a productive day for me. 

I made my way back to London and left Manchester with a prayer of healing. 

She could have been a 100 

Dancing cheek to cheek, I am dreaming a little dream of you, I get a kick out of you, because I am sailing over a paper moon, because it wouldn’t be make-believe if I believed in you.
Celebrating one my music legends, the Queen of Jazz, my beautiful Ella Fitzgerald who eternally fascinates me with her voice.

12/20

Looking through my Facebook Timeline this evening after a crazy 2nd day at work, I came across this travel piece by the Telegraph. 

|The world’s best countries to visit – Travel

http://www.telegraph.co.uk/travel/galleries/best-countries-to-visit/spain/
Honestly, it has left me feeling very proud, achieved and even more content with my life at the moment. 

The opportunity and honour to see some of the most beautiful countries in the world is the greatest gift I have given myself. 

Travel is a means of investment and wealth in my life. It’s my continuous education process after leaving the world of academia, travel stems from my hunger to know, learn, see the world through other people’s eyes and cultures. Travel is my acquisition of knowledge, a source of my tolerance and acceptance of human beings. Travel helps me form levels of emotional intelligence, with depths of self-awareness which helps me learn a lot about myself. 

Travel is what connects me to the many diverse people in this urban city of London that I do love. Travel helps me make deep meaningful conversations with friends from all over the world, cab drivers, waiters, colleagues, neighbours. It’s what connects me to the souls of other people. 

I am unenthused about the weather and about how my lemon muffins turned out shitty because I put too much butter in the mixture. I shouldn’t be caught dead having conversations as mediocre as a baking disaster. I am not too serious btw. Life is a balance. 

Meaningful conversations is what draws me to engage in a genuine way with humans. I am certainly a sapiosexual. 

There is a Moorish proverb that says something like…

he who doesn’t travel does not know the value of men and the world.

I absolutely am in utter agreement with the list especially of (the 12)  I have visited and I am sure the other 8 will be fabulous as some of the remainder 8 are on my bucket list. 

I haven’t explored Asia very much and will be my focus over the next couple of years especially as I am going into my mid-30s and approaching 40. 

I am hoping to have covered most of South/Far East Asia by the time I am 40. 6 years from now! No pressure!

However, I must add that I do know more beautiful countries in the world that aren’t listed on the article. No one has talked about countries in the Indian Ocean, the Caribbean Islands or South America. 

A lot of these ratings tend to be vey subjective in most instances if we are being honest. 

Anyway, ultimately, I am pleased that France, my favourite country in the world is listed (spot on!) and of course the U.K.country of my birth and home. 

Here is a quote I love…

“To move, to breathe, to fly, to float; to gain all while you give; to roam the roads of lands remote; to travel is to live.” ― Hans Christian Andersen

Praha – My start to 2017

If I ever go away in winter, it’s me seeking some winter sun, like when I visited Olhao in the Algarve in Jan 2015 or Florida in 2014. You wouldn’t argue it makes sense to be in the sun when it’s cold in Britain. 
I thought of being brave and decided to try winter tourism this year. I say brave, because I am challenging myself to do things I have been unable to do for whatever reasons I feel limited to do. I have a health condition called sickle cell anemia which on a normal day doesn’t sit well with me being in contact with any extreme cold weather. It can be dire. However, I did it – strength, practicality and faith! 

It was biting chilly, crazy misty and finger and feet numbingly-cold! Minus averages of 10-12! Go figure! I was anxious. 

Adequate and appropriate clothing and an overkill of layering was the trick! It was all fur and attic gear all round!  

Prague was the perfect destination to explore this bravery. Listed as one of the most beautiful and romantic cities in the world, with very extreme temperate weather conditions (i.e cold winters and warm summers) seeing that Prague lies between both the oceanic climate and humid continental climate, there was all the justification in the world to visit. Moreover, I haven’t really covered East of Europe. 

Prague, this almost fantasy-like- fairy tale city filled with the most stunning levels of colorful baroque history, gothics, art deco buildings, bohemian modern architecture, art, frescoes, literature, history and generally all hippy-chic picturesque levels of beauty was all mind blowing. I just wondered how Prague was restored from ruin after the 2nd World War to ‘magic’

In 3 nights in January, I managed to fit in quite a bit into our tight schedules to see everything and study this almost repressed city in Czech. 

The wanderlust-er wandered in two days – from the hotel to the main town to see the famous and much talked about Astronomical Clock, Charles Bridge, the Padlock Bridge, The Jewish Quarters, Prague Castle, St Vitus Cathedral, The Old Town Square, the amazing Kampa Island overseeing the Vtlava River. I thought I was in LaLa land at this point. 

In my (a)typical sophisticated girl mode, I indulged into the precious creation of stones, by spending an afternoon at the Diamond museum, fitting beautiful diamond rings and making friends with the local staff, learning more about the Czech culture. 

With lots of museums and galleries in this city, I could see a genuine representation of art with the people of Prague. 

It is in this representation, that the concept of history is persevered in the Communist Museum. 

We visited the Communism Museum. However not without a little bit of sweat. We struggled to locate the building as google maps couldn’t just pick up the location. Every time G-maps said we had arrived, we still couldn’t locate the actual building. We then resorted to asking locals who then explained that it was located next to a Casino, above a McDonald’s. Little wonder we spent nearly half an hour wandering. 

Such a bizarre location to situate a museum of this sort, I pondered. 

I found the experience somewhat dark and a little unsettling. Nonetheless, it was an (re)education of the old Soviet Communist history which will sit with my core for a very long time. For everything the people of Prague had been through either through the sufferings from the Nazis or just a run down and prolonged repression of its own people by the communist government was all preserved in this museum. It was extraordinary. The history behind the Jewish Quarters and the synagogue was one I was familiar with but seeing and experiencing first hand, those countless stack of headstones crammed in the cemetery was quite dark and morbid. 

We just couldn’t really understand the evils committed by ‘men’ in this world, the hate, the intolerance of human beings to commit such horrid atrocities against mankind. 

Anyway, I later discovered that the communism museum was found by an American Businessman, Glenn Spicker who originally collected most of the artifacts that make up the galleries. I thought he was a genius. 

Linked to this, by sheer observation of culture and quite a bit of American multinational corporations in Prague, I personally seemed to think the Czech culture had quite a bit of American influence and inferences embedded in its day to day culture. However, the locals seem to think their cultures are more influenced by the Irish. Let’s go with what the locals say…

The museum also helped me make the connection with history of the Austro-Hungarian rule in 1918 which formed Czechoslovakia, with Prague (Czech) against the rule of Austrians and Slovaks against the Hungarians. The fight and divide against all of their rulers, specifically, the Germans came to life in this education of history. But even moreso when I linked the pieces of Austrian history together reminiscing to when I visited Vienna last year. It’s interesting how the world and history starts to form the pieces of puzzle of world events when you travel and explore. 

In our wanderlust, we discovered one of the city’s plushest modern decorated hotels (from marble floors, to hand-made crafted Moroccan carpets, rich mahogany wood, a library of luxurious designer books), – the luxurious Four Seasons Hotel. 

Hidden away in the corner, off the buzz of the city, a couple of metres away from the Jewish Quarters was a plush hidden gem. My type of a hang-out zone. 

Of course, Carol and I stopped at the bar/cafe (CottoCrudo) to have some afternoon tea and biscuits. The customer service was amazing! Beautiful jazz tunes playing in subtle tones with the likes of Ella Fitzgerald on. 

One highlight of my afternoon tea experiences to date, I must say! Not even Claridges comes close. 

Prague, a city with lots of parks and gardens. A fine balance of a vibrant magical city and nature (with beautiful classical music always playing somewhere in the background).

This ‘Mother of Cities’ where super hot Vietnamese food, local dishes such as goulash, local soups and lots of warm drinks in cafes kept me warm in an extreme cold January. 

You must try the ‘Remember’ Vietnamese restaurant. I certainly will remember it all my life. 

Also known as one of the cities in the world to sell some of the best quality beers ever made. Ha! As I do not drink beers, I got my man 3 bottles of the finest ones at the duty-free store in the Praha Aeroport!

The experience of the Astronomical Clock when it clocked 3:00p.m, the stop overs in some of the chicest bohemian cafes, a wander into galleries and some stunning home decor stores even the likes of Hermes, a walk into the beautiful island of Kampa, the people of Prague, the weather, everything, were all highlights of a beautiful start into the year 2017! 

As we checked out of Czech and said goodbye to our amazing hotel butler, Vlasta, I knew I would love to come back to this amazing city, one summer. 

So I have procrastinated writing about my Czech experience until now. But co-incidentally, on Friday, my friend Dami and I took an Uber into Shoreditch for a night out and found that upon striking conversation with our Uber driver, we soon discovered that Martina is Czech. She was beautiful and just drove like a ‘Jane Bond’ girl. It was sexy to watch. Dami and I giggled in whispers about it. 

I told her I had visited her country a couple of months ago and she was excited to make conversations about places in her country I had visited. It was refreshing. She asked me to keep in touch as we live across from each other. Perhaps have coffee soon? I said, “sure”. 

It made realize how fucking diverse London is. What a great city to reside in. 

The world is a beautiful place. We just need to keep discovering. 

PRAHA- ‘Mother of Cities’


The Maltese Window

This week, I was at work when my ex brought to my attention, news that the famous Azure Window otherwise known as Tieqa tad- Dwerjra in Malta collapsed after heavy storms.
We visited Malta together. It must have been our first jaunt as a couple. 

There were no digital phones then so the quality of pictures that created memories for me in Malta was taken on a Nokia phone as we didn’t have these caliber of iPhones of modern times. 

The limestone arch near Dwejra Bay on Gozo, an island in the Maltese archipelago, is one of the most recognisable locations in Europe and the world. 

Popularly known to have featured in the HBO television series Games of Thrones and been notorious as a cliff-jumping location.

I was genuinely sad to hear this monumental natural creation was no more. However, there was nostalgia as I was feeling relatively content that I was able to experience it before the collapse.

When I said, how could they let this happen?

My ex’s response was…

“Sadly it’s inevitable. The same geological processes that made it were always going to be the processes to destroy it.Damn shame though”.

So later that evening, after watching the news first hand and learning of the collapse, it made me reminisce about my travels to Malta. Malta was the first country in Southern Europe I visited many years ago. 

I felt an immediate type of peace when I arrived Gozo. It was quiet. Not many tourists. Malta had a very high elderly population who had left Britain mainly because of the warm climate most of the year round,  to retire there. This meant the housing industry thrived because of British pensioners settling and buying out there. There were many expats as well working in Malta. 

When we arrived our resort, the aura suddenly put me from rat race/ robot girl mode into relaxation mode. Walking the beautiful beaches, feeling the sunlight on my face, experiencing the Roman ruins, some 2nd world war derelicts, typical European style cathedrals and temples seeing the Calypso cave, horse ridding, going on the Gozo ferry to the other side of the island, having a bus tour of Valletta city, eating lots of tapas and sea food, eating Maltese cake and tea at the local’s favorite patisserie – a magical place called Fontanella, visited the natural museum of history, saw the Knights of Malta, and generally just wanderlusting, were all of the beautiful engraved memories I took with me from this beautiful island. 

Malta was dreamy! 

I will miss the window and will visit Malta 🇲🇹 again soon. 

Nature is a beautiful thing, it creates and destroys. 

Experiences are what forms memories when reality has ceased to exist…

World Rare Disease Day

It was exactly a year ago, today that I was in Pfizer’s headquarters in Tadworth with the big wigs (of the pharmaceutical industry, my young student friend, Clara whom I mentor, lives with sickle cell and absolutely adore and John, CEO SCS) educating and representing the sickle community in the recognition of World Rare Disease Day! There are over 6,000 rare diseases in the world and quite a bit of rare diseases are still formally or clinically undiagnosed. 

Each year the World Health Organisation and other global health agencies celebrate rare disease day to raise awareness of some of these conditions. 

Sickle cell is still classified as a rare disease in the U.K. simply because it is known to be affecting 15,000 people across the U.K. Internationally and nationally, the numbers are relatively low compared to conditions such as cancers and diabetes. It may arguably be the reason why sickle patients are known to be receiving inequalities in the health and social care system because of the (in)significance of the numbers affected nationally. 

The numbers are what classifies a condition as a rare disease. However, records of people identified to be living with the traits in the U.K. is almost 600,000 and counting each year. The question is at what point does the most inherited genetic condition in the U.K become ‘less rare’.

I think after Germany and France, the U.K. is the next highest country in mainland Europe to have patients living with sickle cell.

Nigeria latterly remains the highest numbers of people living with sickle cell globally – with a breaking number of around 5 million people with the condition and 115.000 sickle babies continue to be born each year. 20% of the entire population have the trait. These numbers are frightening and the mortality rates are terribly poor compared to mortality rates in the U.K and the U.S. 

Yet the awareness is almost non existent in Africa and remains largely so globally

Being from Nigeria originally, I marvel at the shocking figures and wonder when I can get the strength to start some work at ‘home’. 

Today, I reached out to my friends with other rare diseases such as thalassemia, chronic pain, blue diaper syndrome and others who suffered rare cancers to tell them they are not alone in this. We all are together and hugely remain some of the toughest cookies in the world!

Here is to everyone with a rare disease like myself most especially my sickle cell warriors. Happy Rare Disease Day!

Hope you also got to have some pancakes? Why not?


Colour Photographs: 1977-1988

Yesterday, I matched to Mayfair to see an exhibition which popped up in my inbox a few weeks ago.
I was in need for a wee bit of art. So we went to the Beetles and Huxley art gallery in Mayfair to see ‘Colour Photographs’ .

Ah, may I add that some of the finest places and things in London are free. It was free! 

From Virginia, to Oregon, to Washington, Vermont, Texas, Connecticut, this is a look at the American photographer Joel Sternfeld’s works ‘Colour Photographs: 1977-1988’ when Sternfeld jumped in a VW camper with his 8×10 inch camera and hit the road, aiming to capture a complex vision of America.

Some vintage dye transfer and chromogenic prints which combine excellent composition and beauty with an ironic, humorous and sometimes sinister portrayal of society. Sternfeld says “The reason that I’m showing this work now is that I remember feeling similar fears back then as I do now. If anything, there is an even stronger sense of apocalypse in the air today.”

It was brilliant…

We discovered Ralph Bar by Ralph Lauren and finished off the American culture with some fine cocktails before heading to the Ivy Brasserie in Kensington for dinner to become British again. 

The Bubbly Black Girl Sheds Her Chameleon Skin

It’s been a while since I went to the Theatre. The last play I saw was either at the Barbican “The Return”, or maybe it was “Soul” – the life of Marvin Gaye in Hackney Empire – one my brother treated me to. I think it was just after summer of 16. 
I love stage culture and would watch any stage performance. However, I am not massive on big productions, I like the smaller Indie productions – lots of truths to take home and why not patronise them? Keep the funding going in your local community too. 

I have club membership with the Barbican, I get discounts on everything but theatre. LOL..So as a woman in the Arts, I spend a lot of my ‘arty farty’ time there. But I have now discovered my amazing local theatre has got ‘game’ too so I am looking forward to seeing more plays and musicals there. 

Anyway, my lovely friend, Donna had a couple of tickets she got at discounted rates to go to Theatre Royal, Stratford East to see the ”The Bubbly Black Girl Sheds Her Chameleon Skin”. She asked me to come. It’s local to both of us as we are E15/10 girls.

It was my first time there. I seem to be having lots of ‘firsts’ in 2017.

I thought it was one of the classiest theatres I have ever been to. The interior was a traditional Victorian style building with triple level seating. It has an ornate proscenium arch that compliments a luxurious rouge and gold decor. The production team, visibly based in the basement and the top level gallery. 

I had heard about the bar and the Caribbean restaurant there from a few people complimenting the services. The bar was cosy and the staff were very warm, welcoming and full of smiles and flirt. 

The musical – ”The Bubbly Black Girl Sheds Her Chameleon Skin” by Kirsten Childs.

Because the title is a mouth and word full, I will refer to the musical as ‘Bubbly’ a nickname adopted by the lead female character, Viveca. 

Bubbly was set in the early 1960s where a young black girl, Viveca Stanton, not very unusual, had dreams of being the ‘perfect blond and blue eyed white girl’ trying to become a well-adjusted girl in Southern Los Angeles. It demonstrates her life as a little girl, to a teenage girl and advances to her life and her dream chasing career for fame and career satisfaction in Broadway, New York. 

This musical had been historically performed in Broadway in 2000 or so and was an award-winner ‘wowing’ lots of its audiences. 

It’s now been replayed, European style premiered in Theatre Royal for the very first time. 

Viveca is portrayed as a self-confident and intelligent, young lady, proud of who she is and her heritage, facing the conflicts of the civil rights era in America with optimism rather than anger. 

Her friends refer to her as an ‘Oreo’, deluded about her position in her community. She accepts this position with grace almost as a compliment of emphasis on her ‘superiority’ over other black people when she says (paraphrasing) -What’s wrong with being an Oreo, it’s is a damn too good cookie…

Encouraged by her parents, she believes that the Police wouldn’t randomly arrest African-American men without evidence, that the best dancer in ballet class should get the lead role rather than the lightest-skinned ones and that children of all ethnic backgrounds can get along. She is indoctrinated to believe the black communities who are violently abused by the law are way too different from her. Viveca demonstrated that even within the black communities, there can still exist a class differential. 

She picks up ‘white culture’ in form of ballet dances, builds relationships with white men, had a white doll growing up, heads to Wall Street to take up an administrative position in a cooperate firm and eventually desperately pursues a place in Broadway. A reflection of a life that a lot of black young women in that era would not have imagined living. 

As she grows up and becomes more aware of the injustices around her, she must learn to reconcile her hope and faith in the world with the harsh realities of racism and sexism.

The musical’s themes focuses on self-acceptance and self-denial, racism, sexism, civil rights and independence just as true as they do in the Broadway hit. 

The musical was initially performed in 2000 at Playwright’s Horizons in New York. It was produced to be a saucy, sassy and cheerfully satirical look at how African American women have been defined (by others and themselves) from the 1960’s to the 1990’s. Not at all different from the current landscape to be honest. Look at the headlines on Viola Davis amongst many. 

The book by Kirsten Childs describes the story in a summary evaluating it as …What’s a black girl from sunny Southern California to do? White people are blowing up black girls in Birmingham churches. Black people are shouting “Black is beautiful” while straightening their hair and coveting light skin. Viveca Stanton’s answer: Slap on a bubbly smile and be as white as you can be! In a humorous and pointed coming-of-age story spanning the sixties through the nineties, Viveca blithely sails through the confusing worlds of racism, sexism and Broadway showbiz until she’s forced to face the devastating effect self-denial has had on her life.

The scores of the musical includes Motown, R&B, jazz, pop and gospel. Lots of dance too.

I found it very witty, edging on lots of satirical implicitly, sharply upbeat, absolutely humorous and hilarious, sassy and light-hearted and to an extent was underplayed in a way that could have potentially overwhelmed an audience (a black audience) with intense emotions bogging us down with strong themes of offensive racial inferences. Touché. 

I absolutely recommend it. But you know what, I could totally relate with a lot of Viveca’s story and as the black people kept going on about ‘Black being beautiful’, I say, everyone has beauty regardless of their race or colour. 

It made me reflect a lot about what it looks like when a black African girl/woman picks up interests in the arts, science, culture, travel, writing poetry, inter-racial relationships, ballet dance, museum/gallery hopping, nature loving, classical music, lover of Taylor Swift et al,et al and what this may appear like from people in the black communities. 

They would obviously call you an ‘Oreo’

I am told many times that I am an ‘oreo’, a ‘coconut’, a lover of the white culture, and I am not moved or offended one bit by who I am or what my identity is. Very dissimilar to Viveca, I have found my identity and have self-discovered a long time ago. 

I can’t confidently discuss coffeehouse folk music with my some of my black friends because it’s not something they would listen to usually- and that’s fine. It’s the same way I can’t confidently discuss neo soul music with some of my European friends because they won’t have a clue who Shuggie Otis is and that’s the beauty of culture and diversity. 

I wondered if there was a thin line between one being different from what their cultural norms and standards expect from them and perhaps living in self-denying of who they really are, like that of Viveca’s story. You know? The chameleon? 

Does my preference for European culture superseding African culture make me any less black African than the other person? Absolutely not! Has it changed some of my values and interests, Yes it has and very positively too. 

The jury is out…I believe in mind expanding experiences, it has its uses. 

In Viveca’s case, she had a moment of epiphany. It was self discovery when she said – “I am the bubbly black girl who has shed her chameleon skin”.

#Self-discover. Be You!

What was it Wade Davis said? “The world in which you were born is just one model of reality. Other cultures are not failed attempts at being like you. They are unique manifestations of the human spirit”.

Genome editing; The way for people affected by genetic conditions

Today, I attended the Genetic Alliance workshop to talk about genome editing and what this means for cancer and rare diseases such as mine. 
There were 250 applications nation wide and I was shortlisted as part of 17 to be an ambassador for this project. 

This isn’t linked to my day job but my voluntary work with the sickle cell community in the U.K.

My friend, Sajid was also there to represent Thalassemia, another similar genetic blood disorder like sickle cell. I adore Sajid. He is so damn witty. 

So, basically you have a complete set of genes in almost every healthy cell in your body. One set of all these genes, (plus the DNA between the genes), is called a genome. 23 of our chromosomes make up these genomes. 

Genomics is the study of genomes. 

If we get the Genomics medical treatment right, the U.K.could be the first in the world to revolutionize treatments for genetic diseases. Now there is a thin line between diseases you are inherently born with and those you acquire later in life and a good example of this is HIV. You could inherit it from birth or acquire it. Cancer could be in this category too. 

One of the challenges is finding actual conditions that are specifically caused by flawed genetic coding to be able to apply genomes sequencing treatment to an individual. There is of course, all the ethical ramifications and controversies (media being one) that come with global trials such as this. 

Former Facebook President, Sean Parker is funding this in the States. He compares this trial to the “Manhattan Project”.

The Chinese are pioneering phases of gene editing.

In the U.K., we are. 

It seems to be a global competitive process in modern medicine. But why shouldn’t it? 

There are over 6,000 rare diseases in the world and so many children and adults are still undiagnosed. 

It’s one thing to have a genetic condition and be diagnosed and it’s another thing all together not to know what you suffer from and therefore have no access to treatment.

I was lucky to be diagnosed a couple of months after my birth when my mum couldn’t understand after she had fed me and changed my nappies and I would still be quite distressed and cry uncontrollably. Until one day, the midwife asked her to bring me in for tests (it was Guy’s hospital then) and voila, “ma’am your baby has sickle cell”! Early 80s? Go figure! 

4 million diagnosed people with sickle cell globally.

So the next step (after the the first breakthrough of British scientists creating and completing the genetic code of every human being) is to revolutionize genetic treatments further. 

These geniuses have started the ‘reading’ of the human genome which forms our DNA, letter by letter and this process is called sequencing. 

Fetal gene therapy (and the controversial eugenics) are other trials that are ongoing but all have one similar theme- correction! 

I love people in the Sciences. 

Why am I interested? 

At least 80 percent of rare diseases are genomic with half of new cases found in children. Knowledge of the whole genome sequence may identify the cause of some rare diseases and help point the way to new treatments for these devastating conditions – sickle cell is quite straightforward. 

Now some people may argue that sickle cell was borne from the mutation of hemoglobin genes in geographical areas quite tropical and high in malaria, which somehow means carriers of the traits are immune to malaria and there are other similar conditions too quite similar in analogy. However, I believe that there has to be some advancements to life as we evolve which corrects or re-writes these spelling genetic codes with less interference on our DNA. 

As most rare diseases are inherited, the genomes of the affected individual (usually a child) plus two of their closest blood relatives will be included to pinpoint the cause of the condition.

There is a real opportunity here for people like me living with sickle cell and generations to come to benefit from what could be a new discovery of our DNA coding and how it could potentially be a life saving reality for people with genetic disorders and cancers. 

I have followed this subject since the U.K. Government announced its funding for the programme under the NHS. I even applied for a job in NHS England to be a programme manager as part of their team. 

I am now pleased to be involved with this revolutionary process and what could become a phenomenal reality for future generations. Who knows? Watch this space. 

We will be opportune to visit the genomics lab in Kings Cross shortly. No one gets easy access there btw. 

My highlight today was being able to meet a number of people with other rare genetic conditions across England and it was such an eclectic crowd this afternoon and a learning curve for me too. Each of us looked so great that I couldn’t physically see the condition that any of them suffered from and that’s one of the beauties of life. You see people everyday and you don’t know what they may be going through or internalizing. 

My Distressed Heritage of Pain

When Courtney asked me to write a blog on how I deal with pain, my immediate thought and response to him was – ‘yes, sure but I must say, sickle pain feels like long history’. 

Does it? I asked myself. 

I was on a pain train. The positive side which I am grateful for is that the train has seized to move for a couple of years and I hope not to have this train resume it’s movement ever again. 

The last time I had any sort of major sickle pain was in 2012. 
Before this time. I would have an average of one acute chest syndrome crisis in a year – specifically during the winters. My crisis were usually around this time of the year, predominantly my chest and back, throbbing in excruciating pain that rendered me helpless. These crises would always start in the middle of the night with minimal oxygenation. I called it the ‘nocturnal crises’. 

Who else tends to have a crisis between 1am and 4am? 

How have I dealt with pain? 

If I am being honest, not a great deal. When/if my sickle pain is enough to make me dial 999 to get an ambulance to my flat, then seeking medical help in hospital is the only way I can confirm I have dealt with pain. 

Generally, I get two levels of pain. The one described above where honestly speaking, I cannot help myself and the low level pain which is often quite isolated – perhaps in the fingers, or just the ankle, or my jaw, wrist etc. This kind of pain is usually negligible and I can work and play through it, sometimes without any pain relief. I have to add that my threshold for pain exceeds reality. I can cope for hours without pain relief until I get to excruciating levels before I scream for help. This isn’t good. 

One of my doctors told me as much as I have a great level of pain threshold and tend to avoid pain relief due to the hallucinations after being given them, sometimes stopping the sickling is a good thing to prevent further organ damage. The only way to stop it is to manage the pain. 

But, I have never really liked the effects of the strong opiates so I try to avoid them as much as I can. 

Anyway, If I get the pain in more than one area at the same time, then that’s enough warning for me to start medicating at home with my locally prescribed analgesics.

I would take a cocktail of codeine and Ibuprofen, drink about half a liter of water, put out any noise around me, have a lie with a snug blanket and have a little snooze. More than half the time, I wake up feeling pain-free. If I neglect the initial sickling pain nudging on more than two areas for too long, I am likely to have failed in managing my condition at home. I would have guessed at this point, that I have sickled in more parts of my body compared to when it started so I am likely to run into problems. 

But rather than focus on how I deal with pain in sickle, I tend to focus on how to avoid pain in the first instance as I tend to be more proactive and less reactive in my care. 

With the help of the hematology clinical team, and a substantive understanding of how sickle affects my body and my condition, my quality of life is great. 

My treatment- Hydroxicarbamide is the treatment I have used to date to manage my sickle care. When I started a number of years ago, I was frightened of the toxicity of the drug and how it may potentially affect me. However, it’s affected me quite positively and I get no pain. I have never suffered any sickle complications as a child or adult. My blood levels and HB fetal are great. My fatigue levels are better than it used to be. I don’t get jaundiced eyes or nails, I haven’t suffered any ACS or chest infections. No transfusions! My health has been generally great. 

I do get the occasional headaches and my nails get dark from time to time. I am more than happy to live with those side effects than to have pain and constant hospitalisations, the side effects are non- existent (and superficial) in the scheme of things. 

I have a great career, I am widely travelled, I volunteer and help communities,

I enjoy culture and have a great social life and my mental health is amazing. I have my own charity in Africa which supports people with sickle. I participate in every thing sickle nationally and locally where possible.

I attend the sickle cell children’s holiday and it’s so fulfilling to care for the little ones with sickle cell. 

I volunteer for the Sickle Cell Society and support the Hackney support group, SOLACE.

I work with clinicians at specialist centres to support service improvement programmes in sickle services. 

I write blogs, poetry, books, watch lots of movies, analyse them and drink lots of water, teas and of course eat cake. 

My diet is fine. I try to eat my greens and fruits. My partner helps me with cooking healthy diets. However, no kidding, I snack on lots of crisps, nuts, etc

I do not drink soda and I rarely eat fried foods but I love a good old steak and some spinach and kale on a Wednesday! 

I drink 6-8 glasses of water a day. 2 when I wake up, 2-3 at work and 2 before bed. Side effects? Lots of toilet breaks. 

I drink alcohol very rarely and when I drink, I have a nice red wine but must drink lots of water before and after. I have never smoked and I practice yoga and do exercise at home when I feel energetic during the week. 

I dance a lot too!

Because I travel up to 5 times a year, sometimes. when I fly, I drink lots of water the day before and the morning of my flight. So I don’t get a crisis after a long haul flight. 

I stay away from caffeine. I take frequent breaks and hydrate a lot and dress up warm. 

I buy my annual world travel insurance for protection and always have my travel prophylactics if I travel to Africa 

The NHS are a caring organisation and I care about the NHS because they ‘got’ me. It is why I chose a career in health (after working for the Foreign Office) and have worked on local and national projects in England. My job is highly pressured but the NHS cares about people so the legislations protect me from any potential harassment due to my long term condition. 

I take lots of leave, when I am tired. I book spas and massages to help me rejuvenate. 

I read a lot. Books, articles, news etc

Above all, I live life and sometimes forget I live with sickle cell. My mindset is mostly positive and I believe in mind over matter. 

I have a loving family and partner who love me to the moon and few amazing friends who look out for me always. 

I care about everyone suffering with sickle cell and I believe focus should be less in dealing with pain and more in avoiding pain all together. Make the right choices. 

Life is too short to be in constant pain…

The power is in our hands.