“What is wrong with your eye ?!”

“Wha wrang wid yu heye?”, “Who hit yuh?”, “Bees sting yuh?” are a set of questions curious onlookers would ask when they see my right eye for the first time. Why these questions? Well, I have a rare medical condition called Congenital Ptosis. Let me take this opportunity to explain the condition that I have been faced with my entire life and to share my journey which has been quite a remarkable experience.

Congenital Ptosis is a birth defect that occurs when the Levatormuscle that lifts the upper eyelid is not fully developed at birth. This results in a drooping of my upper eyelid. Another sign of Congenital Ptosis is that of having uneven or absent creases on the eyelids. Forest Whittaker an actor well known for his roles in Criminal Minds: Suspect Behaviour and Black Panther is one of the most famous persons with this condition. While the condition affects the appearance of my face it does not necessarily impact my vision as I am still able to see from that eye.

My journey with Congenital Ptosis is over three decades long with many happy and emotional moments. Unfortunately, the Levator muscle does not usually improve on its own so the eyelid requires several surgeries to be corrected. Having had various consultations with a specialist from a totally different area than the area that my family was researching as a child, I embarked on a long and painstaking journey of corrective surgery.

This corrective measure can take several years to complete andwould require one or more surgeries. For me, this phase to correct my Congenital Ptosis has spanned almost 10 years with 8 surgeries to date. These surgeries included:

✓ removing fat from the eyelid using a procedure called Blepharoplasty,

✓ testing the muscle of the eyelid to see if it has residual function and if so, shortening the muscle, by removing a part of it to make the eyelid shorter using a procedure called Levator Resection

✓ and strengthening the muscles with additional assistance in a procedure known as a Traditional Frontalis Sling Method.In this procedure, the levator muscle is attached to the frontalis muscle (located above the eye brows and along the forehead) using a fascial sling harvested from my thigh muscle. By using the frontalis muscle to raise the eyelids, this procedure should relieve the Levator muscle and help to mimic the movement of a normal eyelid.

There are several risks associated with this type of surgery namely scarring, an abnormal lid crease and failure of the eyelid to close completely. These are all scary prospects, but I proceeded with the surgeries to see if normalcy could be achieved. It should be noted that Congenital Ptosis if not corrected at an early stage could result in the development of another eye condition called Amblyopia otherwise known as “Lazy Eye” which would require an entirely different set of procedures to correct.

The Covid-19 pandemic caused my Frontalis Sling Methodprocedure to be postponed until further notice as it has been deemed non-essential surgery. Since then, I have been waiting to hear from the hospital regarding the resumption of these surgeries. During the waiting period, I have been doing some reflection and soul searching. I have been trying to figure out if I really want to continue this journey or if I would prefer to embrace my condition and instead embark on a new journey that raises awareness about my condition and that empowers other persons with the condition to be confident in themselves. While I am still deciding, consider this the first step in exploring my new journey.

Contributed by PE Shauna McLeod.