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

Kenalog 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