December 29, 2020
Dear Dr. D’Amico,
Do you remember me? Have you wondered how I eventually made out and how I’ve been since our post-op follow up appointment in 2011? In long, here it is.
Exactly ten years ago today, you performed my last surgery to repair the scleral buckle on my left retina. I had very little vision left going into the OR, just some color, motion and light in a very limited field. We hoped to salvage what was left of my sight. In retrospect, that was 20/20 for me. Ultimately, the procedure was not successful. I had already lost my right eye and am now officially NLP. But I would try it all again in a heartbeat.
Upon first meeting you at my pre-op appointment, you were affable and patient but realistic. I was an anxious, desperate wreck. Scrubbed and prepped, we next met in the OR at Weill Cornell. My last memory before the anesthetic cocktail kicked in is of you asking me about my favorite red wines, having realized that I am Italian despite my married surname. Funny I should remember that.
Our journey to the hospital that morning was an adventure. NYC had been hit with a massive snowstorm the previous day that crippled the city. Snowbanks were piled five feet high and dogs were wearing wellies. Trash collection was impossible and nearly everything was closed. We had delivered our seven and ten year old boys to the apartment of college friends for the previous night. My husband watched stupefied from the back of our taxi while a tourism promo by Jimmy Kimmel played. The driver seemed annoyed that we had bothered him so early in such weather. Didn’t we have better things to do in the midst of the biggest storm to hit the city in half a century than to traipse around town at 6AM?
My hopes were reluctantly high. You were the god of scleral buckles and I felt privileged to be under your knife or scalpel or right angled scissors or whatever instrument you would be using to perform your magic. I could barely believe that you were willing to brave the elements to accommodate my travel circumstances. You and your assistant, Morgan, were so gracious and soothing.
By late afternoon, my family was ensconced in the west side apartment of my mother’s cousin’s wife’s son. The boys had explored the Museum of Natural History with my dear college girlfriend and her children. We ordered Mexican from a mom and pop shop on the block. Another dear college girlfriend came to visit and distract me from the pain once the anesthesia wore off. I even called my calm and caring Rochester retinologist at his home to share that it sounded like all went well. I just had to wait and see. Or not.
My follow up appointment the next day felt like it took forever. The boys were tired and cranky. Everything was still backed up and running late because of the storm. And my heart was beating wildly in anticipation of your judgment of the surgery’s likelihood of success. The bandages were removed. There didn’t seem to be much light, but that was to be expected for a while. It could take 3-6 months for the eye to heal and for me to regain some vision. I wondered- would it be as good as it was before the surgery? Would it get a little better? And when I asked about any restrictions or limitations, you simply said, “Rest for a few days and avoid Mexican food.” Shit. After all that, I’d gone and screwed it all up for a burrito. And I was too ashamed to tell you. But maybe you were joking? Did I mention I was an anxious, desperate wreck?
We left your office and the not-so-bright lights of the Big Apple armed with eye drops, paperwork, suggestions for good cabernets, and a pocketful of hope. I remember working furiously to catch the lines of the road as they slipped under the hood of the minivan. And I thought, maybe, that I caught a glint of light reflected off the prisms of the suncatcher I had made at the body peace weekend I had spent with girlfriends on Keuka Lake that summer. Was that a car whizzing by us on the left? Or was it all just my imagination?
I was scared and exhausted by the time we pulled in the driveway in Rochester. It was the day before New Year’s Eve and I didn’t have a stitch of energy to rally for our traditional celebration with friends. I crawled into bed and stayed there until 2011 arrived, with exceptional trips to the bathroom, refrigerator, and wine cellar. The boys traipsed off to the Travers’ house to ring in the new year with my blessing. I wanted to be alone snuggled up with my fears and my cat.
Every day I played games to see if anything was coming back. Did I see the light switch on? Was my husband wearing a red shirt? Could I see my hand moving in front of my face? I just couldn’t know for sure. With all my previous surgeries, I usually had some idea within a week. I felt disheartened. I felt ashamed of my impatience. All the love and prayers of family and friends didn’t seem to be working. But a few glasses of wine appeared to help. At least it took the edge off and medicated my sorrow. Things always improved eventually. Or at least they didn’t get worse, right?
The frenzied waltz never ended. I just felt more worried and weary and dizzy. The orchestra in my head got louder and more cacophonous. There were too many sounds, too much noise. Sleep was the only respite for the descending darkness in my heart. There I could dream. There I could see, albeit imperfectly. Oh, to watch the world painted in hues of every color, to witness the emergence of Henry’s dimple or the gentle cleft in Oliver’s chin, to be hunting for praying mantises in the tall grasses of my childhood field! Although I hate shopping, time and again I would find myself sifting through racks of children’s clothes alongside my grandmother, in search of a magnificent bargain for some baby I didn’t know. Even snakes and nightmares and monsters were beautiful.
By the time I returned to NYC for my follow-up in March, my husband refused to accompany me. My drinking was out of hand and he couldn’t tolerate my gloom. He had become distant and angry. He was scared too. And he had no tools to grieve. I smiled in public and yelled in private, mostly at him.
Terrified that the darkness was permanent, I worried who would hold my fear, my anger, my sorrow? It was too heavy for me. Blindness had crept up on me from behind. I could feel its hot breath on my neck but I couldn’t turn around. I muffled it with merlot and Funyons nearly every night for two years. But I kept smiling in public, kept being the friend that I needed, kept honoring my commitments and mothering my kids as if my life depended on it. Mother of the year, PTA president, professional volunteer extraordinaire- it wasn’t enough to fill the hole in my soul. So I numbed it instead. Who would listen to me anyway? Who would have pitiless compassion? Hadn’t I been gifted three decades of sight on which my memory could feast? What kind of ingrate was I?
I casually asked a friend if she wanted to come with me to NYC for my follow up in March. To my astonishment, she agreed and we boarded a Megabus together on St. Patrick’s eve. We stayed with Liz, the college friend who had watched my boys during my surgery. The appointment was early and ostensibly painless, but for the sinking feeling in my gut. It might take a few more months, you said. The repair looked good with no inflammation or infection. And so I knotted up that thread of hope and swallowed it.
The day was young. We ate way too much Indian food on a bench in a random little park near your office. We rummaged around Central Park and St. Patrick’s Cathedral, landing square in the middle of the parade. The only thing I remember is the smell of beer everywhere and Amy’s description of a large white rat riding on a man’s shoulder as he watched the floats pass by. Oh, yes! And the scene in the subway of a gaggle of twenty-somethings drunk off their asses, trying to figure out destinations and fares and regaling each other with their inebriated exploits.
Back in Rochester with dwindling hope, I jumped back into life, Shoving off all the pity I perceived and donning my supercape and flying around town doing good for other people. Really, I was trying to prove to myself that I could do the things I had done before, only without vision. I created a student -driven literary magazine at my kids’ school and served as president of their PTA. I taught sensitivity to blindness seminars at our local agency for the blind. I volunteered with the Rochester Broadway Theater League as an audio description consultant.
I hosted playdates and organized birthday parties, Christmas parties, Halloween parties, and, of course, wine parties. I ran and participated in five different book clubs and delivered homemade meals to families in need. I cleaned my house, did the laundry, and cooked wonderful dinners for my family. I crafted with my boys and took voice lessons. I attended baseball games and soccer games and swim meets. I grew tomatoes and squash and eggplant and herbs. I pruned bushes and shoveled snow. I smiled the whole time and I wore myself out. What did all that prove to the world but that I was an overachieving, insecure nutjob? Never did I cry. Always I neglected my husband. And I drank myself into Alcoholics Anonymous.
That is when I started to accept the things I cannot change, the courage to change the things I can and the wisdom to slow down and learn to love myself. Ever so slowly and with more than a few cases of the “fuck its”, I have gotten sober and more content. Sure, I still do a lot, especially for others, but I am discerning what actually matters and learning the practical strategies and skills of living with no light perception. Yes, I have skydived, downhill skied, learned to play beep baseball and created a nonprofit for blind athletes. But I have also learned to meditate, practice yoga, rely on my God, worked hard with a therapist and a sponsor, and invest more meaningfully with my family. I have embraced adaptive technology, utilizing screen reading software and the voice over feature of my IPhone. Like everyone else, I have learned to Zoom this year. I have worked briefly and sporadically and am ready to transition from my 21 year
career as a stay-at-home mom back into the regular workforce.
Still a “good girl”, I have maintained regular check upst with my retinologist and my corneologist. I have cried and I have laughed. I have battled depression and accepted medication as part of my recipe for sanity. Ironically, I have started light therapy to combat non 24 and Seasonal Affective Disorder. This blog about courage and gratitude has given me space to reflect on my experiences in a Satisfying way. It has afforded me a picture window to the multitude of gifts in my life. I am developing the ability to recognize my resilience and
blessings. My anger has largely transformed into patience. I am trusting others with what was my secret sadness. I am recognizing the difference between compassion and pity. I am accepting help.
My life is better because of my experience with you, even if the surgery wasn’t a success. I am a more focused and willingly vulnerable person. I lean on my friends and have discerned the difference between them and acquaintances. I’m allowing myself to receive empathy and realizing that my life is worthwhile. I am cautiously optimistic that technology will be developed to gift me with some kind of vision in the future. We’ll just have to wait and see.. Regardless, I thank you for trying and for unwittingly giving me the opportunity to grow and thrive. If I lived nearer to you, I’d take you out for Mexican to celebrate our efforts!
Anyway, How have you been?
Gratefully,
Kirstyn Smith
Rochester, NY
