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 little life
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
The night stars shone so bright
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.
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.
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.
The preservation of the legacy of one of fashion’s ever greatest designers.
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.
Pierre Berge passed away aged 86 in his sleep last Friday, 8th September 2027 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 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. Tom and I are into low budget inde movies anyway.
But hang on, have I stressed enough my undying love for YSL and Tom Ford? The pair of them = phenomenal and obsession. But of course, and oh, so Chanel!
So 2017 has been such San amazing year so far and to top it, 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. Wishing I was there for all the Seattle Art Affairs…
And then, last week wide eyed and in lust at the new (un)affordable Supreme Bouquet fragrance which has recently joined my bourgeois perfume collection.
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.
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
I am ultimately one of those women charmed by him.
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!
8.54 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.
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.
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.
He scans both eyes.
Next stop, another scan, same machine, brighter lights with additional lens added on.
Focal vision for photography.
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.
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”!
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)