Mariya Ali

Life isn't about finding yourself. Life is about creating yourself.

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Tiny Eternal I-cell Footprints



There is no foot so small that it cannot leave an imprint on this world.
Author unknown
I remember the day well. The sun was shining outside and I had planned to go and see my friend Zainab and her adorable son that afternoon. It was the first time I would be able to leisurely spend time with him sans others around. I hadn’t seen Zainab in a while either, so I was happily looking forward to whiling away the afternoon with them both.

As usual, we made tea and started chatting away, as old friends do. I watched as Zainab sat holding adorable little Adnan in her arms, wrapped up in a soft fluffy blanket. I stopped to take a sip of tea.

The conversation stopped while I sipped my tea and Zainab stroked Adnan’s head. For a few moments there was silence.

“Adnan has a life limiting disease. It is called I-cell disease. It’s really rare and there isn’t a cure.” Between her sobs I heard her say, “It breaks my heart to know that one day I won’t be able to hold him in my arms.”

I put down my tea and Zainab continued to stroke Adnan’s head. For a few moments there was silence.

I put my arm around her, at a loss of what to say. Part shock, part disbelief, part compassion, part confusion, I felt a plethora of emotions. Emotions for the beautiful child she was holding and emotions for the beautiful friend that I have.

My mother always told me that I would never understand what it’s like to be a mother until I am one myself. Witnessing my friends who are mothers has made me understand the wisdom in this. I realized that I was ill equipped to comfort Zainab at the time, after all, I have never experienced being the giver of motherly love myself.

When I got home I called my best friend, a mother of two. I told her what had happened and asked for her advice.
“What should I have said? What should I have done?”
“Oh I know about I-cell disease”, she said.
How did she know about I-cell disease? From what I had read and heard from Zainab, this was an extremely rare disease that few people were aware of.
“I’m friends with the Gandhis, the people who founded the Yash Gandhi foundation that raises awareness and funds for research. Isn’t that a coincidence?”

Yes, it is quite a coincidence; except I don’t believe in coincidences. Everything happens for a reason.

The advice I was given was to just be a good friend. I started to spend more time with Zainab, Ali and Adnan, send more messages, whisper more prayers. I facebook stalked Zainab, Ali and their family so that I could see more and more pictures of Adnan and updates on the cute things he does. With every second spent around him, every picture and every anecdote, I found myself falling more and more in love with this little Angel.

Rather than reading about I-cell now, I read about the amazing children past and present who have this illness. All babies are cute, but the beauty of seeing a baby with I-cell smile is breathtaking. Their huge chubby cheeks, insanely long eyelashes and gigantic smiles melt your heart. They radiate strength, endurance and courage.

Adnan has had a profound impact on me and on those around me. Every day I am inspired by Ali and Zainab’s strength. I watch their dedication and unconditional love towards Adnan in amazement.

“Adnan is here to teach us something”, said Zainab one day. She was referring to herself and Ali, but I do believe that he is here to teach others lessons too. You see, most of the time you see a child and momentarily think “oh, what a cute baby!” You linger on this thought for a moment or two and then the image vanishes into the abyss where all of the other images of cute babies you have seen reside.
But not Adnan.
His adorable face is a face that you will never forget.
His adorable face is a face that teaches you about endurance, hope, perfection, joy, love, happiness, sadness, elation, devastation and everything in between.
His adorable face is a face that teaches you about how precious love and time are.
His adorable face is a face that teaches you about life.
His adorable face is a face that you will never forget.

Adnan’s footprint may be tiny, but his imprint on his family, friends, acquaintances, strangers and the world is immense.

After all, everything happens for a reason.

I urge you all to learn more about I-cell disease and help find a cure to save these little angels.
You can donate at:
1. The Yash Gandhi Foundation (www.ygf4icell.org) – currently the only charity that funds research specifically for I-Cell Disease. The charity was set up by the parents of Yash Gandhi after he was diagnosed with the disease.
2. The MPS Society (www.mpssociety.org.uk) – the MPS Society have supported us from the beginning, and help raise awareness and money for I-Cell disease as well as other related diseases.
3. Shooting Star Chase Children’s Hospice (http://www.shootingstarchase.org.uk) and Noah’s Ark Children’s Hospice (http://www.noahsarkhospice.org.uk) – these and other children’s hospices do a fantastic job in providing care and support for children affected by life limiting and life threatening conditions and their families.

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Female Genital Mutilation: India’s Well Kept Secret

Bohra brides

Those who know me even vaguely are aware of how firmly against the practice of FGM I stand. It saddens me to think of all of the innocent, unsuspecting girls who trustingly go to a doctor or an elder, only to be brutally mutilated, oftentimes without any anesthetic and in poor sanitary conditions. There are so many reasons why I believe this is so wrong on so many levels. I previously wrote a blog entry on this topic.

Today I was sent a great article on FGM within the Bohra community:
http://www.thequint.com/2015/apr/07/female-gender-mutilation-indias-well-kept-secret

To highlight a few points (my comments are italicized):

“When I was around seven, my grandmother took me on an outing. We went to a dingy building. The women there told me to take my panties off. Then all the women, including my grandmother, pinned my arms and legs down. One of the women took a blade and began cutting me down there. I screamed in terror and pain.”

Those may be the words of only one woman, but they convey the anguish faced by many.

I 100% wholeheartedly agree with this. This practice has no place in 2015. It is barbaric, brutal and unislamic. Mutilating innocent girls in the name of religion, scarring them for life and causing so much grief and pain is not something that a benevolent God would endorse, let alone enforce.

“Tasleem’s goal was to collect enough signatures to present to the Bohra High Priest, His Holiness Dr Syedna Mohammad Burhanuddin, ordering a ban on this ritual.

However, Burhanuddin’s spokesman, Qureshi Raghib, regrettably ruled out any change and claimed he had no interest in discussing the issue:

I have heard about the online campaign but Bohra women should understand that our religion advocates the procedure and they should follow it without any argument.
– Qureshi Raghib, Dawoodi Bohra community spokesperson”

And with what authority does Qureshi Raghib speak? Has he personally sat down and studied Islam, to find the actual context of the Hadith that this tradition is based on? ( A woman used to perform circumcision in Medina. The Prophet (peace be upon him) said to her: Do not cut severely as that is better for a woman and more desirable for a husband.) Notice how a woman who was already doing this procedure was told to not do it severely. Nowhere is it said that this is a required practice in Islam. Has Qureshi Raghib ever sat down and listened to a woman describe her experience? Has he ever seen the look of sheer terror in a young girl’s eyes when they first see the blade? Perhaps then he may develop an interest to discuss the issue.
Mr Raghib, I am a bohra woman. Who are you to tell me what I should do with my body? Who are you to tell me what parts to keep and what parts to cut off? Who are you to tell an innocent child that?

“Debate on this subject is generally taboo and any discussion sacrilege. The women of this community, are made to believe that it is practised all over the world, as well as crucial for their social acceptance.”

Exactly. It’s all kept secret, not to be spoken about. Even amongst us girls, the topic is rarely discussed. This is why this practice continues, despite the fact that it is illegal. Education is needed so that people can make informed choices, rather than “follow it without any argument”.

A great blog on this can be found at https://breakthesilencespeakthetruth.wordpress.com. Bravo to the woman who has created this site, going against the grain and standing up for what she believes is right. It’s high time that the rest of us women who have endured this primitive procedure, or those who know anyone who has been through this trauma stand up and take back our basic human right to keep all of our organs intact.

PS. Please sign the petition

10 Life Lessons I learned from my grandmother

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Today marks a month since I last saw my grandmother’s beautiful face, heard her soothing voice and laughed at her funny jokes. My life was enriched greatly through every moment that I shared with her and I would like to share 10 of the very many things that I learned from her.

1. Never let another person dictate how you feel
I remember several occasions when Nanny was spoken to abruptly and harshly. Raised voices, undeserved criticism and mean words intended to hurt were flung at her, a scenario which would reduce many others to tears – but not Nanny. She would brush it off, smile and then offer the other party a cup of tea. She taught me that your feelings are yours and it is your choice whether to allow others to create or change them, so simply choose not to.

2. It is always a good time to have a good time
I can’t recall a point in time where I was ever around Nanny and not smiling. In 15 years of living under the same roof and countless interactions since, I have never had a frown on my face because of her. More than happiness though, she was just so much fun to be with. Whether it was dancing in the aisles at an Elvis Presley impersonator concert, checking out cute guys or going for a musical, Nanny proved to me that with the right company and the right attitude, everything is fun. I’ll miss her cheeky smile when she knew she was up to her mischief, but I will continue to keep her legacy alive by trying to have as much fun with others as I did with her and endeavour to be that much fun to be around too.

3. Never underestimate the impact of a small gesture
It was 2009 and I was in a dark, dark place. I was hospitalised and having a particularly rough time. I remember the nurse coming in and giving me a cupcake from Millie’s, my absolute favourite. She had told me that my grandmother had come to give it to me and so I asked her where my grandmother was so that I could thank her. After all, the hospital was an hour and a half by train from her house and at that point, Nanny walked with a cane. It was a huge effort for her to come all the way to see me. Informing me that she had left, I called Nanny.
“Nanny, where are you?”
“I’m on my way home dear. I came to drop off your favourite cupcake because your dad told me that you weren’t doing well. I left because I didn’t want to disturb you. I hope you feel better soon.”
Needless to say, with every bite of that cupcake I felt better and that one act of kindness is one of my most precious of many lovely memories that I have of Nanny.

4. A simple phone call is all it takes to show someone you care
There’s nothing worse than being wrapped up in a warm duvet in a cozy bed when you’re sick and then having to jump up and run downstairs to answer the phone call before it goes to voice mail. Unless, of course, the phone call is from Nanny.
“Hello darling, your dad told me you’ve got a cold. I was just calling to see how you are doing.”
Or
“Hello Mariya, your dad told me that you didn’t sleep too well, I just wanted to make sure you are okay.”
Every single time I was sick, without fail, I would get a phone call. Every time I will be sick, I’ll hear that phone call in my head and remember the healing feeling of knowing that someone cares that much for you, knowing that she always will.

5. Make the most of life
Nanny’s father, my great-grandfather, Albert, fought for England in both wars. During the Great War his knee was hit by shrapnel resulting in him having a limp. In the second, nerve gas left him with a chronic cough for the remainder of his life. Nanny was 9 when the war ended and she would often tell me about how she was sent to the countryside during the war to keep her safe. I believe that witnessing the war gave Nanny an appreciation of life that she carried with her and lived by for the remainder of her time here. Always looking on the bright side, enjoying each moment, pampering herself and selflessly devoting herself to her loved ones is how I will always remember her and how I aspire to live. There was a silver lining in every cloud for her and whenever I would get upset, she would tell me to “never mind. You can’t go back and change the past.” She would just move on, forgive, forget and be happy.

Along with life, Nanny had a refreshing outlook on death. “When I’m gone Mariya, I’m going to come back and haunt you. I’ll flicker all the lights and scare you!” After she passed away, the lights in the house flickered daily for over a week. I smiled and said “Hello Nanny.”
A couple of Christmases ago Nanny gave me a pendant with a beautiful poem on it. I read it and said “Nanny, you’re not dead yet!” Upon which, my mother scolded me. Now, I’m going to make a plaque for her grave with them poem that she gave me and I wear the necklace all the time.
It reads:
“Those we love don’t go away,
They walk beside us every day.
Unseen, unheard, but always near,
Still loved, still missed and always dear.”

6. Always take pride in your appearance
I look at a lot of my peers and their relationships with their grandmothers and I realise just how incredibly lucky I am to have had the relationship with Nanny that I did have. While other grandmothers had grey hair for years, my Nanny was experimenting with her hair colour. Red, light brown, auburn, blonde, Nanny was always up for a change. We had mani-pedis together, haircuts, shopping trips…I felt like I was with my best friend and not my grandmother, but then Nanny filled both of those roles. Her hair was always done, her nails were always painted and she always had her rouge and red lipstick on. She was confident and beautiful, up until her last breath and beyond.

7. Leave voice mails
Since caller ID, who even leaves voice mails? You can see the missed call, so there’s no reason to leave a message. Plus, I don’t want my voice to be recorded, not to mention the possibility of another embarrassing voice mail like I left for my friend Zenab on her family answering machine, where I started the message by calling her “Zenab Aunty”. I then spent the remainder of the message apologising for my mistake and trying to explain why I accidentally called her that and that categorically, in no way did she look like an aunty. Moral of the story is that voice mails, in my most humble of opinions, are pretty pointless.

When I came home the day that Nanny passed away, there were new messages on the machine. People had heard and were calling to give their condolences. 38 messages, some old and some new. An alert told us that there was only 2 minutes of recording time left and we would have to delete some of the messages, after all, we were sure many more people would call and they did.
Message after message was from Nanny.
“Hello, Yousuf, just calling to see how you are.”
“Hello Mariya, can you call me back please dear? Thank you.”
“It’s nice to hear Mariya’s voice on the machine, miss her, love her heart.”
And my ultimate favourite:
“Hello. Guess who?!”
It’s so comforting to know that I have Nanny’s voice recorded to keep forever and I can listen to her whenever I want. Each message reflects her personality, caring, kind, thoughtful, funny, mischievous…and each time I hear it, I feel like I’m talking to her again. So from now on, no more simple missed calls, I’m going to leave a message. I just hope that I don’t accidentally call my friends “Aunty” again.

8. Pets enrich your life
Nanny loved cats and surprise surprise, so do I. We grew up with Leo and then Tommy, the former a ginger cat and the latter a black and white cat. I have so many fond memories with them, petting them and playing with them. I resolved a long time ago to have a cat when I get my own house and have my own children, so that they too can learn how comforting and fun a pet can be. Both of our next door neighbours have cats and every time I pet them, I remember my childhood and my many memories with Nanny’s cats.

9. There’s nothing better than the written word
I remember my dad coming home one day and telling me that Nanny had given a card to me. That’s odd, I thought. It wasn’t my birthday or Christmas, the two occasions when I would, without fail, receive a card from Nanny. Perplexed, I opened the card.
“Dear Mariya,
I just wanted to tell you that I love you and that I’m always here for you. I hope you have a happy life and that all your dreams come true.
Lots of hugs and kisses,
Nanny xxx”
All these years later, I still have this card in my memory box.

10. Life is sweet
At the end of each meal, Nanny would say “What’s for sweet?” No meal could go without dessert. The last time I saw Nanny, a week before she passed, my brother and I had taken her out for lunch.
“Where do you want to go for lunch Nanny?”
“That place with the good sweets!”
My brother tried, in vain, to convince her otherwise. The restaurant was 10 minutes from our house and half an hour from Nanny. It meant I had to drive all the way back to the restaurant, then all the way back to drop Nanny and go all the way back home again…an extra hour of driving. Nanny was adamant – she wanted that dessert!

We ordered Nanny’s usual, a bunless lamb burger and we had our burgers.
“I can’t eat any more”, Nanny said half way through her lamb.

Bhai and I finished eating, looked at each other and gave each other that mischievous grin that we both learnt from Nanny.
“Ok, let’s go home Nanny. If we leave now we can beat traffic, otherwise we’ll hit rush hour.”
“But what about dessert?”
“Nanny, you said you’re full.”
With her finger, Nanny outlined a little circle on her belly and said “I left a little space for dessert, right there!”
Nanny finished a sundae meant to be shared by 2-3 people so I think the space she saved wasn’t quite as little as she claimed it was.

Bhai and I have both inherited her sweet tooth, much to the dismay of our future cardiologists I’m sure. However, Nanny taught us to always keep space for the things that you love!

Just like Nanny did with all of her meals, I will finish on this sweet note. I’m so lucky to have had Nanny, she was the kindest, funniest, sassiest, craziest, most fun, caring, sweet, selfless, loving, adorable, charming, sincere, indulging, generous, gracious etc. etc. etc. ad infinitum grandmother a person could ever ask for and I love her deeply, sincerely, wholly and eternally. I miss her every moment of every day, but I know like she promised me on my necklace, she’s with me, walking beside me and occasionally flickering the lights.

Life is a roller coaster (just gotta ride it)

And so here I am, months later. I feel lost, as if I’m wondering in the woods, in a slightly confused daze. Bare foot and completely oblivious to where to go and what to do next.

I spend hours soul searching nowadays. I try to figure out what I want to do and how I want to move forward and then I realise that I just don’t want to. I just don’t want to plan what to do next. History has taught me that planning doesn’t seem to work out for me. Envisioning my future sets me up for disappointment. So this time, I’d rather just blindly stroll through the woods. Perhaps this way, I’ll stumble upon my path, because attempting to carve it doesn’t seem to be my forte.

So what’s been going on the past few months? Well, a little this and a little that. A roller coaster of emotions, as is the story of my life, but a particularly topsy-turvy, loopy (no pun intended), up and down roller coaster ride. Perhaps one where you sit down after a dodgy kebab as well, just to liven up the experience. I’m single. I’m not alone, I’m not lonely and I’m not desperate. I’m content going to bed with an abundance of unnecessary pillows surrounding me and waking up spreadeagled across the double bed, just because I can. A lot of quality family time, bonding with family across the pond and attempt to get some sort of routine. Yet something is missing, and through the fog in the woods, I can’t quite see what it is.

A love song to myself…

My dad has epic taste in music; growing up I listened to Simon and Garfunkel, Peter, Paul and Mary, Bob Dylan, Bob Marley…music with meaning, music about the world, music that is hard to come by in today’s charts. Music that had profound meaning about life and love and philosophy and everything in between. I may not love Dylan’s voice, but I will never tire of reading his lyrics.

There was one song that I adored more than any other though – a song I used to jump on the bed to. A song I used to listen to over and over, back in the days when you had to rewind cassettes. I knew exactly how many seconds to hold down the rewind button to get to the beginning.

Today, these lyrics speak to me in volumes. It is a beautiful love song, and today I wish to sing this song to myself. I know, call me self indulgent 🙂

You with the sad eyes
Don’t be discouraged
Oh I realize
It’s hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colours
Shining through
I see your true colours
And that’s why I love you
So don’t be afraid to let them show
Your true colours
True colours are beautiful,
Like a rainbow

Show me a smile then,
Don’t be unhappy, can’t remember
When I last saw you laughing
If this world makes you crazy
And you’ve taken all you can bear
You call me up
Because you know I’ll be there

And I’ll see your true colours
Shining through
I see your true colours
And that’s why I love you
So don’t be afraid to let them show
Your true colours
True colours are beautiful,
Like a rainbow

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Five years on…

Today is five years to the day that I started work at Goldman. I look back, and it’s been an incredibly bumpy ride. Not so much professionally, but my personal life has taken so many twists and turns that at times, even I’ve had trouble keeping up!

I remember my first day like it was yesterday. I was an eager 22 year old who thought they had the whole world in front of them. I thought I had it all figured out. I was engaged, I had the job of my dreams and they had agreed to transfer me to New York. That was it. I knew exactly how my life would pan out, and I had already envisioned my white picket fence house in Long Island with green eyed husband and two kids.

A lot has changed since then. My naivety, although still there, is diminishing. I don’t have it all figured out, and I’ve learnt that even if I think I may, I still won’t have it all figured out. But I’m not worried, in fact I’m learning to accept that I don’t need to know how my life will end up. I’m happily enjoying the highs, and becoming stronger through the lows.

Where will I be in five years? Who knows. I don’t, and that doesn’t bother me one bit.

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A friendship that stands the test of time…

The last few days, events have unfolded in my life that has made me a) sublimely happy and b) eternally greatful to my best friend, Rehana.

Onto my best friend, Rehana. I have only met in person with Rehana a handful of times in my life, but her role in my life is as imperative as the breath I take. Over the years, she has continued to be my rock, the one constant in my life. Any time of the day, she is always only a phone call away. I am always greeted with unconditional love and rock solid support.

I’m not sure what went through my mind when I got in touch with someone who had once been dear to her, and events have unfolded so quickly and in such a haze that I myself am unsure on the details. But, long story short, without intending to, I jeopardised my friendship with one of the most important people in my life.

I won’t go into too many details, other than to say that I am the luckiest person alive to have such a friend as her. She has shown understanding, and more so, she has forgiven my wrongs simply because she wants to see me happy. I’m a big believer in karma, but I doubt that a thousand lifetimes of noble work would merit having a friend like her in my life. I am truly blessed and eternally greatful to her and for her.

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