A Camera Saved My Life

Born in Fort Lauderdale, Florida on December 20th, at nine months old, I was diagnosed with Retinoblastoma; a rare non-hereditary sporadic children’s eye cancer. Shortly after, my right eye was surgically removed. Since then, I have worn a prosthetic eye. As a result of radiation, I have also experienced hearing loss, which is still declining to this day, so I wear hearing aids in both ears.

Zaakirah at 9 months old. Mom spotted the white dot.

For the longest time, I never put much emphasis on the word “survivor,” nor truly understood the meaning of it. It took a long time to connect the dots — that survivor is actually a positive word; I made it through something difficult, yet rare. It took time to realize that there is so much more to life than focusing on just the negative side of things. Most children with this type of cancer rarely live to be a year old. The fact that I am still here is a blessing in itself.

Being diagnosed at nine months old, I do not remember much about the surgical procedure nor any post-traumatic stress, however, I do feel there is PTSD. As a result, I do not react well to emotional or verbal pain.

I have always loved music. I am what you would consider a music head. I enjoy almost all types of music. I spend most of my leftover money on music and entertainment. Having experienced attending concerts and music festivals, I enjoy feeling the bass through my chest.

I was always a quiet child and an observational introvert. At six-years-old, I was given my first camera — a Kodak Polaroid. From there on, nothing could stop me from photographing everyone, everything and every place I went. With a camera, I could allow the camera to be my voice. By sharing my story, I allow others to see life and humanity through my monocular vision. It is truly a blessing to be able to see all the beauty that is surrounding us.
 
As a youth, I started with travel and landscape photography. By middle school, I was capturing candid moments of close friends and family. By the time I attended a technical high school, I chose to study in the Commercial Photography program. There, I was introduced to a whole new world of photography and digital cameras. I found my voice that I have used in my photography, resulting in later choosing to expand my higher education in a Professional Photography program. Even in today’s world of camera phones, I find such joy in photographing and connecting with people.

My mother has celebrated my birthday every year, even the tough teen years where I did not want to. Now that I am older, I praise my mom for that. It is a good parenting skill to have for any parent raising a child with disabilities. It was a reminder that I was special, that I had a greater purpose, and that my life has value. My parents have always made sure I knew there was a bigger world out there than the one where we lived.

The first country I visited was Costa Rica, with a group for deaf, hard of hearing and sign language enthusiasts in high school. Shortly after that, I was accepted as a student ambassador to travel on a two-week European tour through the United Kingdom, France, and Italy. However, the most life-changing travel experience was the summer after high school, when I was accepted to volunteer in Ghana for two months with Operation Crossroads Africa, the Peace Corps before the Peace Corps. Not long after that, I was blessed to spend 30 days between The Gambia and Senegal, where I also happened to meet and marry my husband. Before, I was close-minded about traveling due to fear and thoughts of not being safe and comfortable. Now my goal is to see 30 countries by the age of 30. 
 
With every trip, there were plenty of difficulties; adjusting to different climates which affect the hearing aids, causes dry eyes and inflammation of the prosthesis, being in various circumstances where I moved around so much that my hearing aids were misplaced, feeling left out or uncertain when struggling to hear in loud environments. Each situation only made me more confident, stronger and more responsible.
 
In order to survive in these difficult situations, I learned I had to speak up for myself. It wasn’t until I chose to tell people that I am a cancer survivor that I started receiving help. I also started hearing loving phrases like “You are so inspiring,” “You are a miracle” and “You are amazing.” I believed it and received these compliments. There were times where I have been denied, doubted and bullied, called names such as Lazy Eyed, Cross Eyed. I made it past that by knowing my purpose, my role, what makes me unique and what makes me happy. I made the conscious decision to be healthy and happy, while educating people along the way. Then it clicked: My purpose in life is to inspire!

Zaakirah at 22 years old. Image by Erick Robinson

Zaakirah’s Wedding Photo

Now that I have been married for three years, it’s still a challenge to adapt to living with and teaching a spouse to learn how to communicate and be empathetic. Being with someone who has had almost no health issues growing up, it takes time and patience and a special person to be with someone with invisible disabilities. Now that we have been trying to conceive, I am learning more about my body that all correlates with the cancer. The only thing we can do is pray for the best and be prepared for the unexpected.

I am forever grateful to be a survivor. As a child, there were times when I was still adjusting to wearing the prosthesis. When it bothered me too much, I would just take it out and hand it over to my caregiver. That’s the motto I have had about life ever since. Life is short. You can’t take life too seriously. When it gets to be too much, just hand it over to God.

I encourage anyone going through the cancer journey, whether you are the survivor, the friend, or the family member, to write out your feelings, not necessarily publicly, but privately, for your reference later on in life. A personal audio or video even works.

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Zaakirah Nayyar Demba is a professional portrait photographer, videographer and social media marketer based in the Nashville, Tennessee area. She has been photographing since the age of six, but professionally since high school. She is an avid traveler and travel blogger, having traveled to ten countries in eight years. Her goal is to inspire people with her story and her work, while connecting with people all around the world as a visual storyteller and a shining light to others. On a journey to conquer visiting 30 countries by the age of 30, she writes about her journey at www.zaakirahnayyar.com