You don’t know what you can’t see when you can’t see it…
The first time I put on eyeglasses was a little over 44 years ago. The feeling of seeing clearly for the first time stole my breath away. The transition was like leaving a dark movie theatre and stepping outdoors on a bright sunny day. It took time for my eyes to adjust because suddenly everything was so clear and focused as if all my senses were reborn; sound was keener, flavors more savory, smells more aromatic, touch more sensitive and sight — well, sight was indescribable. Depth perception was strange, crossing streets and walking down stairs was a little precarious as I acclimated to what is considered 20/20 vision.
For 37 years I was blessed with perfect vision provided I wore corrective lenses. That all changed 9 years ago with two words, “macular hole.” It began when I removed one of my contact lenses, looked in the mirror, and to my horror, half of my face was missing.
The diagnosis, while grim, in my situation all the statistics pointed to a favorable prognosis; One, I was considered very young to experience a macular hole, two, odds were it would not occur in my other eye and three; I had a 95% to 99% probability of having my vision completely restored in my affected eye.
What a relief to know that this unfortunate incident was only a minor inconvenience. When my retina specialist explained to me that he would perform a vitrectomy I jumped at the opportunity.
Vitrectomy is an outpatient surgery done under local anesthesia where the surgeon inserts these tiny instruments into the eye, suctions out the eye fluid, repairs the damage at the back of the eye, then inserts a gas bubble. It was kind of eerie being able to discern light and see the shadows of the instruments moving within my eye while at the same time talking with the surgical team. Afterwards I had to keep my head in a constant downward position for 3 weeks to enable the gas bubble to seal the hole in my macula. This first vitrectomy was not successful and a second surgery was repeated 5 months later.
Fast forward 4 more years with trips to my retina specialist, regular ophthalmologist, low vision specialist and Cleveland Clinic I had a total of 6 procedures/diagnosis:
- Detached retina with laser surgery repair in the left eye.
- Epiretinal membrane that developed into a small macular hole in my right eye, experimental gas bubble injection during the office visit (I never imagined that I would have a needle literally stuck in my eye while completely conscious – mental note I will not EVER do this again).
- Vitrectomy in my right eye to repair the reopened macular hole.
- Ruptured blood vessel which occurred after the last vitrectomy required an injection of medication to stop the bleeding.
Though exhausted from all the procedures and diagnoses when my brother suggested returning to Cleveland Clinic one last time I agreed.
The news was devastating. “Ms. McCoy,” the doctor said, “I’m so sorry to tell you there is nothing more we can do for you.” Those simple words confirmed my worst fears and violently shoved me into the dark abyss of despair. I am now legally blind.
After all I’d been through, I was numb, like an out-of-body experience, I could hear the echo of my heartbeat and I had a difficult time focusing on the doctor’s next words. After what seemed like an eternity, he continued, “Ms. McCoy, you have lived with this condition (high myopia also known as severe nearsightedness) all your life and you have done everything you should do by regularly visiting the eye doctor but you have reached the point where your vision can no longer be corrected.”
By the way, high myopia is a severe form of myopia where my eyeball stretched and became too long. This can lead to holes or tears in the retina and can also cause retinal detachment. Abnormal blood vessels may also grow under the retina and cause changes in vision.
Today, after the removal of the cataracts the left eye is now the good eye with vision measuring 20/600. The vision in the right eye is “finger counting” a measurement used when standard methods no longer work. Out of curiosity I asked my eye doctor what follows after finger counting and was told “hand waving” and “light perception.” Even with these different means of measuring vision because of the vast spectrum of vision loss what one person sees with a specific condition, may not necessarily be the same for another person with the same diagnosis.
Losing my vision feels like being enveloped in a thick, never-ending fog. I sometimes dream that I can see only to awaken with the knowledge that it was only a dream. Throughout the past 9 years, as my eyesight has deteriorated to legal blindness, I’ve learned so much about visual impairments, coping strategies, and advocacy.
Through this experience I have met and worked with the most exceptional people and organizations. Some of which include the Checkered Eye Project, Foundation Fighting Blindness, American Council of the Blind, Pennsylvania Council of the Blind, Golden Triangle Council of the Blind, Blind and Vision Rehabilitation Services of Pittsburgh and VisionAware. I am so honored to be able to serve on the various committees that are part of some of these organizations.
Have a great weekend!!
“Although the world is full of suffering, it is full also of the overcoming of it.” ~Helen Keller