Thursday, 7 September 2017

a day in the life of... me

So recently, I felt like I had to write about it because it's such a prevailing issue that dictates my life that I look back and think about how I haven't mentioned it more. Or ever.

For the handful of friends who know - well, you guys already know. And if you didn't know, it's probably because the occasion didn't really arise to talk about it and bring down the mood.

How does one casually drop this into their conversation? I just thought you might like to know that...

I am going blind.

A sentence I never say out loud, in fear of its reality, and because it feels like a taboo. If I don't say it, then it's not true.

Diagnosed as a teenager with RP - a genetic condition and incurable disease with not a lot of background and insight into its progressive nature - it all sounds like the perfect foundation for a tragic drama. Trust me to inherit the faulty chromosome.

Over the years as my sight has failed me and my peripheral field decreases, I face annoyances such as brightness hurting my eyes, having to live in sunglasses ("but it's not even 'bright'"), enduring head rushes every few minutes and complete blindness in the dark. I can no longer function in the outside world on my own without someone holding my hand (unless the street is void of people 'cause then woo, no one to walk into). I can no longer get that London job that I always thought I would have when I was younger, because no one is going to hold my hand and take me to the door of my work (my parents already feel burdened that they have to drive me to the next town every weekday). I can no longer pop next door to Sainsbury's on my own because the idea of navigating anywhere where there are people is just too stressful. I can just about do a train journey on my own, but then it feels so bothersome that you always have to get someone to meet you at the stop.

The list goes on.

I don't talk about it, not because I don't like talking about it , but because it's very much an awkward conversation topic for the recipient to respond to. Because people don't want to listen to sob stories where they don't know what they can say to make you feel better. And like with any illness or disease, it's the kind of thing normal, healthy people won't be able to fathom because they've never experienced it.

And maybe I am tuned to be acutely aware, but there isn't the same level of sympathy and compassion for the visually impaired as there is for, say, a cancer patient. We are not dying and we are not sick and we are not in physical pain.

Just YouTube Andrea Begley on The Voice for a slew of blind jokes and puns. And whilst John Green romanticised cancer in The Fault In Our Stars between the two mains, the supporting character was dumped by his girlfriend because he went blind. How's that for optimism.

And whilst I power on through the day like I'm fine, mentally I feel very drained. I have felt mentally drained about this ever since I was a kid and realised that I was not being a hypochondriac about weird things that started happening to my vision.

And it's the little things in life. The little things in life that make you happy, but also the little things in life that bring you down. Like being really good at table tennis and badminton and then never being able to play again. Like how I just want to rest my eyes, but have no choice but to sit in front of a computer screen for 7 hours everyday because that is my job. Like looking at a bunch of colours and then realising that slowly they all look the same when I know they're not. Like the time I accidentally walked into a man and he was so furious, he shouted in my face and called me a bitch. Like the time I walked into the woman who retorted 'ARE YOU BLIND?!' Like the time I walked into someone in a wheelchair and looked like the careless bad person. Like the time I crashed into someone else and bruised one side of my face. My life is full of moments that rain on my already-drowning parade. Sometimes it feels like I'm stuck in a nightmare - like one day I'm going to wake up and it's all going to be ok.

But it's not. Because when your sight goes, it just goes. Whilst the doctor tries to reassure and tells me I'm very young still so there's chance that in this lifetime there will be a cure, I also raise one eyebrow to the fact that the hospital I'm an outpatient at are currently funding research and focused on a very specific type of RP "that affects Saudi Arabian men". So, back of the queue then.

But this isn't a pity story. Because pity is the exact opposite of what I've ever wanted. I want people to understand me. I want someone to pat me on the back and tell me I'm doing a good job. I want to live like my life is normal.

Whilst I'm having a hard time, there's a lot that keeps me going; the rays of sunshine peering through the grey clouds. When my friends take my arm and tell me to mind the step. When I have holiday buddies to travel with. When my bf waits for me at the door of my bus when I get off and holds my hand. When he always tells me "I've got you"...

It's the little things.

Sunday, 11 June 2017

goodbye... forever

Last night I erased your number from my phone.

Sometimes I'm ok when I talk about it, because life goes on. But sometimes when I think about you, the memories choke my throat and prick my eyes. Sometimes I will feel completely fine, but then suddenly I will really miss you, and your voice. Like tonight - a bout of sadness is shrouding me again. And I wonder how long I will feel this way. I wonder how long the grieving process takes...

It's hard thinking about life without you. But the hardest part was seeing you alive and suffering, and frail and weak. I will slowly try to forget those last memories of you, because they were the most painful and you wouldn't want us to remember you like that.

Sometimes I replay that video of you singing Happy Birthday out of tune, because that's the only recording I have of your voice, and I never want to forget how it sounds.

I hope it's nice up there, because it still feels strange and empty without you down here...

Thursday, 2 March 2017

lisbon | portugese adventures


Rossio Square fountain and a nice absence of tourists

I need to stop writing blog posts like half a year after I've been on holiday because I keep forgetting everything I did... Anyway, our 5-day getaway to Portugal (in the Autumn!) was full of sporadic sunshine, typical tourist ventures and Portugese tarts. It was a surprisingly quiet capital and a lot more vacant than I had expected, with a certain quaint vibe that European cities always have (and London is kinda devoid of). Lisbon was fashioned with cobbled sidewalks, grand and intricate landmarks and old buildings.

We stayed at the contrastingly modern Sheraton Lisboa, with its atmospheric lighting, dark, sleek rooms and very naked, glass-paned bathrooms. We also lived off Lidl baguettes and pâté in the mornings because who pays 30 Euros for hotel breakfast?


The best lobster bisque I've everrrrr had | The best bacauhal of the trip | Smoked salmon with capers and Charcuterie board at Artisan Wine Bar

Food is always the highlight and quest on a good holiday. Our ventures included Salsa Rosa Bistro, Artis Wine Bar, Pastéis de Belém, some amazing lobster bisque and bacalhau in I-can't-remember-the-name-of-the-restaurant (but it's on the same Belém road), Manteigaria and probably a few others that I might have remembered the name of if I had only bothered to write this post sooner. And my favourite dinner place Frade dos Mares, a little seafood restaurant tucked off a main street.


Belém | Lagareiro style octopus at Frade dos Mares | Manteigaria

And if there's a Pastéis de Belém vs. Manteigaria debate, Belém wins hands down. Manteigaria wasn't even close. Belém was the perfect amount of sweet. It is Portugal's number one after all. I remember the first time that I had a pastel de nata was in the Venetician Macau and it tasted so good that I'd been nostalgic ever since, and Belém satisfied that completely -throws confetti-


Praça do Comércio | Tram 28 | Jerónimos Monastery

Our checklist:
  • Rossio Square - a huge, ornate fountain with Cirque de Sardine across the road (a tinned sardines emporium)
  • Praça do Comércio - very picturesque, but I almost died from the heat and Attack of the Flies. One flew on my lip, FYI
  • Castelo De São Jorge/St. George's Castle - also land of wild peacocks
  • Jerónimos Monastery
  • The aquarium Oceanário de Lisboa
  • Tram 28
  • Rua do Diario de Noticias - trekked around this ambient area for some restaurant hunting

And that concludes our relaxing, little city break. Next stop: Rome.


Sardines anyone? 

Thursday, 5 January 2017

hello 2017



My 2016 was a whole loada fluctuations of ups and downs. Bad health was ongoing, private healthcare was expensive, a lot of physical pain, some emotional, and continual struggles with inner demons, but I also had a lot of highlights and special moments which flew by far too quickly. It's a shame life has no pause button.

A recap of the good:

• Landed my first proper Marketing job which I love
• Saw Queen Bey on her Formation World Tour
• Visited the bucket list ultimate Santorini
• Went pastel de nata hunting in Lisbon
• Scored the Friday Forty and watched Harry Potter and the Cursed Child
• Lost the title of cat lady heh heh

And because it's the new year, I'm going to attempt some resolutions:
• Exercise at least 3 times a week (not to lose weight, but because I'm unfit af)
• Read a book every month
• Blog at least once a month (quite optimistic this one is)

Happy New Year!