It has been a week since my first eye surgery – a lens extraction and intraocular implant, or what is commonly referred to as cataract surgery. On the night before the surgery took place, I shot a few candid videos of myself with the following thoughts.
To provide some medical context, I have dislocated lenses, thinning retinas and severe myopia (near sightedness) in both eyes, one worse than the other. There are differing opinions in the Marfan medical community about whether or not lenses should be removed due to the tendency of an artificial lens to also dislocate (because of weak connective tissue) and an even bigger concern that a lens implant can cause retinal detachment. It is also difficult to predict what kind of vision is possible after the surgery, though it is estimated that post-operative vision will be improved. I later learned that sometimes a dislocated natural lens (like my left eye) can fully detach and fall into the back of the eye causing damage to the retina. Even without prophylactic lens surgery there is always a change of retina issues, which I have been warned about since I was young.
A close-up photo of my left eye taken during one of my pre-surgical appointments. You can see how the lens has moved south instead of centering on my pupil.
My surgeon, who is said to be among the best in complicated cataract cases, uses a relatively new technique and was very optimistic about my outcomes. He also presented a 1 in 500 chance that complications could occur. I am not one to focus on the numbers, but those odds scared me. To calm my qualitatively inclined heart, the surgical fellow described some lovely cases of success with patients who, like I, have Marfan syndrome.
Fear of complications, and potentially worsening vision aside, I had bigger questions about what successful eye surgery would mean for my sense of self and identity.
I have lived a wonderful life as a woman who is visually impaired, albeit a label that I have struggled to accept and share because of the stigma associated with it. Not to be cliché, but I do feel blessed. The challenges I have faced set me on a path early in life to learn resilience, empathy and purpose.
In terms of negotiating disability, it took me a number of years, a few persevering professors and copious amounts of reading and applying theory to begin to understand how I was swept up in and corroborate ableist notions by feeling like I had to hide or overcome my physical impairments.
Until that time I did not have the language or tools to recognize that much of my anger and frustration stems from living within a society that draws distinctions between bodies. This further marginalizes and/or pities those who identify or are labeled as disabled rather than examining how our collective attitudes, assumptions and the structure of our everyday environments pose challenges to participation and inclusion for many people.
Side note: When I edited this post I noticed that I wrote “fear of complications, and potentially worsening vision..” in a paragraph above. The fact that I wrote that very sentence in a blog post about surgery and ableism demonstrates how ingrained our fears about disability are and reveals that I am not immune to them.
It has been just under five months since I was offered the option of surgery. Though I am hopeful, I have also felt a sense of sadness throughout this period of waiting. Part of it is due to a feeling of being lost in transition. Just waiting. The other deeper reason is because I feel like a chapter of my life may be ending. No matter what the outcome of surgery, my life will change and I may not be as I once was. I feel sad and guilty for being excited about the possibility of a different future.
I took these videos because I never want to forget or disvalue what my life was life before. I’ve tried to hold back all expectations, mostly because I can’t imagine what it would be like to live as someone who is more sighted (if the surgery goes well) than I am now, but also because I now realize how the weight of striving to be “normal” has cost me.
I have no doubt that the vision I have grown up with and all that is associated has shaped the person I am today. I hope that will remain a part of who I become, no matter the outcome.
But I also need to give myself permission to explore and enjoy a new chapter in my life and a (potentially) different me.