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
- 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 www.sarahhinchey.com and browse her beautiful work!