A ‘Miracle Child’ Grows Up and Faces Diabetes and Disability

By Everyday Health Guest Contributor

Published Jul 15, 2014

By Wendy Fernandez, Special to Everyday Health
My fate with the healthcare industry was nearly doomed before I was born. My birth was highly anticipated even though my parents were still in high school, but as teenagers they were naïve about the medical system. Unemployed and uninsured, they relied on the free medical assistance available to them.
During my mother’s pregnancy, she felt a lot of pain and discomfort and was rushed to a hospital in the Bronx, N.Y., where she experienced a miscarriage. Because of a lack of health insurance, she was immediately sent home with no follow-up care. A short time later, she suffered severe pain and had to be rushed back to the hospital. The doctors discovered she was still pregnant. It turned out that I was a surviving twin.
Medical care in the Bronx at this time was more than lacking, and due to poor prenatal care I was born with many medical complications. For my family, I was the miracle child who was not supposed to live more than a few weeks after birth. Our family rallied around my parents and myself with their undying love and support, dealing with my allergy to penicillin and several reconstructive surgeries. My parents, being so young, had no idea how to negotiate the medical system, knew nothing about malpractice and how to pursue a case against the hospital that, a few years after I was born, closed its doors.

Jobless, Uninsured, No Hope in Sight

In my teen years, my mom eventually got a job with New York City OTB (Off-Track Betting), where I also started working when I was 18. This guaranteed health coverage for the entire family. The coverage was adequate, but there were still many out-of-pocket costs for medical supplies like catheters, medications, and extra overnight stays in the hospital that were not covered by insurance. By my late twenties, I had had a few more surgeries –  for a hernia, removal of my left ovary, and an elective surgery where I flatlined due to a latex allergy.
At the age of 40, however, my job of almost 25 years at NYC OTB ended when the business closed its doors permanently in 2010. I found myself unemployed and uninsured.
Things turned from bad to worse. Two months later I suffered strange symptoms like blurry vision, extremely dry skin, bouts of exhaustion, loss of appetite, and extreme dehydration. I could barely walk into the doctor’s office. I was diagnosed with severe diabetes. Everything I thought I knew up to that point changed forever.
At first I thought it could be managed like every other illness I had managed since childhood. I was so wrong! I started on insulin right away and then metformin. You don’t just get to have a physical reaction to diabetes — you also have a strong emotional reaction. It sometimes takes away your will or desire to do anything. It feels as though the world is caving in and you’re going to be buried in a pile of fear with no hope in sight. 

Fear of Dying Fires Me Up for a New Challenge

It has been four years now since my diagnosis and I still do not have my diabetes completely under control. My sugar level is usually not as high as it used to be, but some days I awake and it’s over 200, and other days it’s as low as 40. When my illness was at its worst, I lost about 70 pounds. There were many times when I couldn’t bear to look at myself anymore because of how sickly I looked. It was difficult letting friends and family see me because of how painful it was to have the look of pity they gave me.
Up to this point, I had always thought of myself as a strong person, able to handle anything mentally or physically that came my way. Being born disabled was all I knew. As a young child, I was forced to mature early. The scars in the photo on the right I’ve had for as long as I can remember. I’ve had my left kidney removed, some internal reconstruction, and a temporary colostomy. While some kids learned about Santa Claus, I learned about the possibility of death.
But now, for the first time in my life, I really believed that I was going to die soon from this disease. The fear of death gave me the motivation to fight and survive. After a long two-year battle with Social Security to get disability coverage, I was finally granted full Social Security Disability Insurance permanently, and now I am receiving healthcare coverage.

Disabled, ‘Young,’ and Working to Make a Difference

Though I am not disabled in the “conventional” sense, because of the difficulties I face I am no longer able to work full-time. This does not allow me to afford my own living space and life’s necessities. I lost everything, and, most of all, my “will” was broken. With all of this discouragement, I didn’t know where to go, until I took responsibility — emotionally, physically, and socially. Sometimes we have to become that which we seek! I started looking on the Internet for any programs or associations that could assist me — someone on Social Security Disability who is not elderly. All I could find were homes for elderly and disabled persons.
Nothing is out there for people such as myself who, although disabled, can take care of ourselves within reason and have the mental capability to work even though physically there may be some challenges. At my lowest, a great friend presented me with the opportunity to tell my story of struggle with a lack of health insurance for the local public radio station WNYC. I was thrilled by the opportunity.
My story for WNYC had such a great response that it led me here to a whole new platform so I could share my new journey. I am now trying to take responsibility for the things I can control. I want to raise awareness about people with disabilities and create opportunities for people going through the same struggles. I want to share the hope that I feel in my heart again. And I need everyone’s help. I am trying to become a voice for an audience no one speaks of and many don’t even know exists.
The kind of help that is needed has to be created since there’s nothing like it out there. I must admit that I don’t know how to proceed, but I know I can start by reaching out to all of you! My story is still unfolding, so I ask that you become a part of my adventure. Give me help, direction, and ideas on how to raise awareness and let others know that people such as myself are still capable of contributing on a grand scale. Let’s all make a change together!
Wendy Fernandez is raising awareness for herself and others who are also on Social Security Disability and are not elderly. Wendy’s mission is to reach as many people as she can for support and guidance. You can follow her on Facebook.
PHOTO CREDIT: Rhynna Santos