Sumaira Flower

Sumaira Flower

June 22, 2017

3 Years Later | Desperate to be in Denial Yet Painfully Aware

My 1st hospital stay at MGH Lunder in July 2014
It’s only been three years yet it feels like an eternity. I find myself always feeling somber, nostalgic, and reflective around this time otherwise known as my “NMOversary”. I get lost in my thoughts wondering how different or easy my life would be if none of this happened while simultaneously wondering how unfulfilling my life would be if none of this happened. In short, I’m really tired and incredibly confused.

I attach numbers to everything; it's the way my brain operates and computes. Therefore, allow me to quantify the last 36 months...

85 infusions
26,000mg of IV steroids
as much as 70% visual field loss
12 specialists involved in my care
11 MRIs
9 ER visits
5 potent / chemo-grade drugs
5 hospital stays
4 sessions of plasmapheresis via a port
4 months of menopause
4 eggs harvested
3 collapses
2 lumbar punctures
2 atypical, debilitating migraines
2 PET/CT scans
1.5 years of Plantars Fasciitis / Achilles Tendinitis
1 skin biopsy
Urodynamics test
Ketorolac injection in my right eye
Intravenous Immunoglobulin

I go to great lengths to block things out of my memory and pretend as if my illness isn't that serious. If I don't talk about it or place any special focus on it, it's not real then... right? Make no mistake, I am an obedient and cooperative patient however, I've developed a habit of minimizing my issues which I imagine must be some kind of defense mechanism.

A part of me is very well-informed of the reality of the situation and the other stubborn part of me is adamantly unwilling to accept it. Truthfully, I am having difficulty accepting everything; it still doesn't make sense after all this time and I'm not certain it ever will. I don't want to believe that I have a rare, demyelinating, incurable disease. When things appear stable, I oftentimes forget what's going on behind-the-scenes. Then, something creeps up out of the blue leaving me disoriented and forced to face the facts: my prognosis is unknown, this disease has a life of its own and can turn fatal, I'm still heavily medicated and very much in the thick of things even though I don't look "sick" anymore. 

There was a time when it was visibly obvious that I was going through something. But through the great strides made towards recovery, I've reverted back to looking like a healthy young woman causing a great deal of confusion for myself and others for that matter. Sometimes I look in the mirror and wonder, "how the hell is all of this going on when I look like this?" So many slippery mind games.

When I first got hit with this in 2014, I would've never imagined that I'd still be dealing with it in 2017. I foolishly assumed I'd have to deal with it for a year (at most) and then it would vanish into thin air. It has caused so much disruption and pain in my life, continues to do so, and shows no signs of leaving me alone any time soon. Even though I don't look ill anymore, I am still quietly suffering and very much dealing with things beyond what people can comprehend or see. Perhaps it's the actress in me; I put on a great show which is why people (including myself) are always shocked to hear about what I've been through and continue to weather. 

I was a girl when this happened to me - naive, aloof, and completely unaware. When I look at pictures of myself from right before the onset, I see a girl with so much innocence in her eyes, someone who was clueless as to what was coming for her. It brings tears to my eyes because I wish I could go back and protect her. 

Everything has changed. My vision, hearing, sensations, sleep pattern, eating habits, weight, energy levels, skin, the way I walk, mood, fertility, the asymmetry of my mouth when I speak, my personal life, digestive system - you name it, it has all changed. But things have changed for the better too. What kind of Sumaira post would this be if I didn't couple the bad with the good? I've built a foundation from the ground up, working alongside talented and passionate people, to raise awareness for NMO. I've always maintained that the foundation is the greatest gift of my ailing health. I also won Miss Bangladesh-USA in 2015 representing my native country on a national platform while enduring one of the most potent chemotherapy drugs in the market. The best part? I've traveled to 15 different places all over the world since 2014! Despite losing my vision, my eyes are wide open now. I see so much more and my priorities have changed for the better. I've transformed into a tenacious and resilient woman with unbreakable strength and that, I wouldn't trade for anything else. 

I try my best to focus on all the good in my life because there's plenty to be excited about but, it's not always easy to shift the focus when symptoms compound and spread. Living with a rare, chronic illness can be very isolating. It's becoming increasingly harder for me to relate to people as the disease evolves. The loneliness is very real. It's also extremely exhausting physically, mentally, and emotionally. 

I probably exert 40% more energy than a healthy person my age to do simple things. I've made it a priority to live as normal of a life as I can in order to maintain my sanity amidst the never-ending horror. The end result of that hard work is pretty impressive if I say so myself :) With whatever time, energy, or mobility I have left, I owe it to myself to do absolutely everything I want to do in my life. There's still a lot to do and see and believe me, I will find ways to accomplish it all. 

This post is kind of all over the place but that pretty much sums up where I am at this stage - all over the place. Three years later, I'm still entangled in a medical enigma, searching for answers, frustrated and fearful, but strangely grateful and lucky. The lesson to be learned here is one of the first lessons we learn as children - don't judge a book by its cover. We're all going through something even if we don't look like it. xoS

March 05, 2017

REVIVAL | More Than My Disease

I used to be one of the most vain and confident individuals I've ever come across. I'd have professional, glamorous photos taken of me more often than the average person. I mean, it sort of comes with the territory of an aspiring actress, right?

For the uninitiated, I spent a major chunk of my life in front of the camera. Whether it was for acting, singing, dancing, or modeling, I've always maintained that my most successful relationship has been with the camera; it just gets me I suppose. 

From a very young age, I engaged in theater acting and worked my way up to starring in 14+ music videos, commercials, a documentary, performed voice over work, and was the female lead in an independent film. After giving up my Bollywood dreams, I had an epiphany - Hollywood needed someone like me in the industry. So, I planned to move to LA at the end of 2014 where I'd begin my pursuit of becoming the 1st Bangladeshi Oscar-winning A-lister. 

Just two weeks after the decision to relocate, I got the wind knocked out of me with the onset of my illness. Without a choice in the matter, I had to sacrifice chasing my dreams for dealing with the most unforeseeable circumstances. Overnight, I went from being the naive diva who I was to a young, blind, terrified and vulnerable, debilitated patient with a rare autoimmune disease with no cure in sight. 

From July 2014 to present, I was medicated with & underwent:
- IV steroids
- Prednisone aka "Satan's Tic Tacs"
- Chemotherapy / immunosuppressants
- Lumber punctures
- Skin biopsies
- Plasmapheresis via a central line catheter
- Egg harvestation
- Kenalog injection in my right eye
- Intravenous Immunoglobulin [IVIG]
- Physical therapy

As a result of the disease itself and treatments listed above, I experienced:
- Vision loss
- Weakness & numbness
- Uethoff's Phenomenon
- Hair loss
- Premature menopause
- Erythema Ab Igne
- Atypical migraines
- Neutropenia
- Pneumonia
- Depression & anxiety 
- Plantars Fasciitis
- Achilles Tendinitis

Side effects to the above have included severe bloating and constipation, acne, suicidal ideation, weight loss, weight gain, permanent scarring, skin discoloration all over my body, and facial asymmetry to name a few things. Needless to say, my body has been through A LOT and during all of this, the last thing I felt was beautiful or vain... 

Let's fast forward to 2017. While, I'm still very much dealing with my disease, I have come a really  long way. Nothing excites me more than seeing the jaw-dropping reactions most people have after I tell them about what I have and what I've been through; it's truly a very rewarding feeling. They always say, "you'd never know!" With the help of my medical team, new treatments, diet changes, psychologists, meditation, and light exercise, I look "normal" again albeit, a little different and a bit older with a few crows feet wrinkles. But truthfully, the most significant catalyst to getting to where I am now is this vehement refusal to let my diagnosis dictate every aspect of my life. The day I finally realized that I was more than my disease was the day I started living again. 

This is what prompted me to finally muster up the courage, step in front of the camera after a long hiatus, and introduce the revived, stronger me to the world the way I know best. I won't lie - I was anxiety-ridden until the photo reveal. I've become admittedly self-conscious and was paranoid about how I'd look. However, after seeing the finished product clicked by the uber-talented Sarah Hinchey, I regained my confidence and was so proud of myself. We accomplished exactly what I had intended: my disease does NOT define me nor should it define you. I believe the beauty that translated in these photos is a result of overcoming struggles and believing in myself, my strength, and my power. If I can do this, so can others. Through these new photos, I hope others are motivated to see themselves as more than their diagnoses too.

I live with an invisible disease with a mind of its own. I can relapse at any given moment causing severe, and sometimes, permanent damage. While I pray  that I never revert back to how things were during my "bad days", in the event that I do, I must always remind myself that no matter what I physically look like, 

"Beauty is only skin deep. External attractiveness has no relation to goodness or essential quality." 
- Sir Thomas Overbury

Thank you Sarah for holding my hand throughout this emotional return in front of the lens. I am forever grateful to you. Please visit and browse her beautiful work!