I knew something was wrong, but I assumed that perhaps all I needed was a prescription of some kind. Still, I was nervous when I got to the ophthalmologist’s office. And with good reason, as it turned out. I was in my early 30’s and I was diagnosed with end-stage glaucoma.
~Helen Gentry | Woman On The Move
In early 2014, I knew something was wrong with my eyes.
A haze had appeared around fluorescent lights in public buildings. Also, my vision always seemed blurry no matter how often I blinked to try to clear it. One day while walking quickly in front of my office building, I ran into a sign and was knocked to the ground. That got my attention! “How could I have not seen that?!” I wondered.
I was busy working fulltime, attending graduate school and raising a daughter, but I finally couldn’t ignore my symptoms anymore. So I scheduled an appointment with an ophthalmologist in my small town. I knew something was wrong, but I assumed that perhaps all I needed was a prescription of some kind. Still, I was nervous when I got to the ophthalmologist’s office. And with good reason, as it turned out. I was in my early 30’s and I was diagnosed with end-stage glaucoma.
Glaucoma is one of the leading causes of blindness worldwide and it is called the “silent thief of vision” for a reason— first the peripheral vision leaves, and the patient doesn’t notice because the loss is so gradual. Once the central vision begins to be affected, alerting the patient to the fact that something is wrong, a significant loss has already occurred.
Heartbreaking News After Diagnosis
After receiving my diagnosis, I also had to digest an additional fact: My condition had resulted from medical malpractice. My optometrist had prescribed a steroid eye drop that I was instructed to use up to four times a day to treat discomfort caused by eye allergies. I now know that this medication is intended for use following cataract surgery. It is not intended to be used for more than 10 days. I used it for 13 months. I also now know that patients who are using this drug are supposed to be closely monitored by a medical professional, and if eye pressure increases, they are to discontinue use immediately.
I was not closely monitored nor was I informed of the risks of using the medication. Instead, I was assured that it was FDA approved and perfectly safe. I was told that the eye allergies could cause some blurriness, which was why I was unconcerned at first about the changes in my vision once I finally did begin to detect them. Just a short time before this medication was prescribed, North Carolina changed state law to allow optometrists to prescribe medications, although they have not been to medical school as ophthalmologists have. My optometrist failed me, and so did my state by allowing this atrocity to take place. Every time I raised the bottle to my eyes thinking that I was being responsible and helping myself, I was giving myself an incurable disease.
Chain Reaction Set In Motion
In the months that followed my diagnosis, I experienced anger and overwhelming grief. I also began to fight to retain my remaining vision. I was a patient at Duke, UNC and Johns Hopkins. At Duke, I underwent trabeculectomy surgery in which a metal shunt was placed in each eye to help drain the pressure. The two surgeries, which I was awake for, were daunting and required a lengthy recovery during which I had to try to stay off my feet.
After the second surgery, I felt pressured to return to work too soon. Once I did, my supervisor put pressure on me to give a brief speech at a large meeting of leadership, faculty, and staff at the college campus where I worked. When I took the podium (a mere week after my surgery), I began shaking uncontrollably. I couldn’t speak and I suffered what I now believe to be a nervous breakdown of sorts. I now understand that major surgery can easily lead to temporary emotional instability, but no one had told me that at the time.
A Difficult Aftermath
In addition to feeling pressured to return to work, I also experienced workplace discrimination in a variety of ways. My boss would periodically stop me on campus and jokingly ask me if I could see how many fingers he was holding up.
A different supervisor condescendingly asked me if I had any doctors’ appointments coming up. His reason being that he needed to be aware if I would be feeling emotionally unstable in the days ahead. He then informed me that he had a wife and daughters and therefore understood the emotions of women. He also said that I could talk to him if I needed to, adding that the word “panties” was a regular part of his vocabulary. It was obvious that he thought that my breakdown had not stemmed from receiving a devastating medical diagnosis and undergoing a terrifying surgery, but it was because I am a woman. No woman should ever be cornered by her male boss while alone in his office and be encouraged to talk about her undergarments.
Sometime later, I received my “TPD discharge” from the US government. This was a letter in the mail stating that I had been found by a government-contracted medical professional to be “Totally and Permanently Disabled.” (Let those three words sink in for a moment…..I can see them now, in bold font across the top of the document.) The letter continued to explain that my outstanding student loans were being discharged completely. As a totally and permanently disabled person, I was not expected to have significant work, so I was not expected to pay back my student loans.
Reclaiming A Vibrant Life
Fast forward to the present, and I am not totally and permanently disabled, nor have I ever been. I am happily self-employed as a life coach, franchise broker, and realtor. I get to partner with my clients to support them in building the life that they want to lead. Meanwhile, I am living my most vibrant adventurous life.
I love being an active mother, wife, and friend. I am currently enjoying traveling as much as possible and seeing as much of the world as I can. I enjoy hiking, taking painting classes and cooking. Soon I will be starting piano lessons. There is so much I want to do. I am filled with gratitude every day that I get to live in the gorgeous mountains of Western North Carolina. My mission through my work and volunteer service in my rural community is to see people, particularly women and families, empowered and lifted out of poverty.
Healing
I’m currently 38 years old, and my worst-case prognosis at one time was that I will be completely blind by the time I am 50. I do not accept this prognosis. (At one point I had a friend strongly encouraged me to simply accept my prognosis, and I concluded that no real friend would encourage another to voluntarily sit down, shut up and go blind without a fight.) I understand that many patients report feeling that it is helpful to them to accept their diagnosis; however, I choose to draw my strength and courage from fighting and defying mine. This is a daily journey of faith in Christ and His healing power. The distinct discrepancy between my medical records and the kind of life that I actually experience on a daily basis is nothing short of a miracle, and I want to continue to be a walking miracle all of my days.
Image Descriptions:
- Featured image taken last summer near Helen’s home in NC shows her standing outdoors. A pretty brunette with shoulder-length wavy hair, Helen is wearing a print tank top and skirt. The waterfall behind her makes a beautiful backdrop.
- A gallery of two black & white photos (before and after) of Helen from her surgery at Duke. In both photos, she’s on a bed in her hospital gown. In the post-surgery photo, her left eye is bandaged.