Perspectives of Sensitivity: Navigating Vulnerability in Medical Care

No matter how many times I take my twins to medical appointments, each time I feel vulnerable, unequipped—raw.

“Mom, I’m not going! And you can’t make me…”

After many days of resounding no’s, Mama Bear rose up. “You’re asking me to be an irresponsible parent, and I’m not willing. We’re going.”

That was the end of the verbal banter, yet resistance chugged along.

I sent an email in advance to the team at UC Berkeley Vision Clinic, requesting that they tread lightly. “She’s sensitive. She doesn’t want the eye drops. She will need to be talked through every move you make with informed consent.”

“We received your note and will be sure everyone on the team is aware.”

I shared this response with my daughter as we packed snacks and comfort objects for the two-hour drive.

It’s not easy for anyone to accept personhood with disabilities. It’s a lot to take in day after day when you feel the limitations in navigating a world that is not always accommodating, sensitive, or aware.

The vision team of four—a teacher, an intern, a transcriber, and a Doctor—met her with kit gloves and blue masks. They were kind, not rushing, and injected a touch of humor. During the exam, rather than see and say C, they accepted “cucumber.” It felt like a game.

The Doctor was especially good at underlining her strengths and being soft around her weaknesses.

They wanted her to have a positive experience. She did, up until a different Doctor showed up to deliver the results. The exam took four hours, much longer than usual. The first Doctor had other exams to attend to. It was immediately obvious that this new Doctor was not made privy to the nuances of the situation. Dr. Tighlips confidently charged in with a clipboard of hard data and did not mince words. Ouch.

As she spouted out the verdict, I watched my daughter hold her breath, lick her lips, and percolate inside, mirroring back the same tightness barking in front of her.

I’ve seen this face, felt this fierceness fuming, many times. I’m at the edge of my seat, peaked for her response.

“I think you’re wrong. I already know this. I was born like this, and you can’t change me. I had retinopathy of prematurity. No, no, no, you don’t know me. Stop.”

Good on you. I cheered silently inside myself.

She didn’t want to be slammed with the obvious as if it were new information.

As if to say, okay, you gather I am legally blind. I already know this. What solutions do you have for me to navigate life with more ease?

At that point, Dr. Tightlips left the room to get a sample of glasses that offer more magnification.

I followed her into the hallway. “I’m sure it is not easy to deliver a difficult report. Your manner was a bit sharp, hard to take in.” She was receptive. “She’s been through testing for hours. The fact she was able to stay in this process is a success for her. I need you to find a way to end this exam on a positive note. Can you bring in someone from the team to review her success, accentuate her strengths, and soften the notes on pathology? I hear your medical concerns. You want her to receive the information, right?”

Our teammate Izzy came in. Earlier she mentioned that my daughter could be the twin of Casey from the Atypical Netflix series. Casey is a role model for her, thus the new haircut, bomber jacket, and running shoes. She repeated some of their fun exchanges throughout the day and gave her a number of high fives for everything she did right during the exam.

A tad of tension left the room but my daughter remained silent. On the drive home, we stopped for dinner. She wouldn’t eat or talk much. I get it. I feel her.

According to the test results, she has significant vision loss in her right eye. Dr. Tightlips made several referrals for additional exams that include eye drops, etc. Which was TMI for the moment.

She treated me a bit like an absentee mom without any knowledge of the diligent course we have traversed for 26 years implementing remedies and acceptance for her complex needs.

I tell the story about her eyes in my memoir Edge of Grace, A Fierce Awakening to Love(revised edition will be available by the end of July, 2023)

During our time in the NICU at Stanford Hospital, the vision specialist told me she required surgery on both eyes to save her vision. I remember holding my tender tiny baby (not yet two pounds at the time). A mother never forgets—her eyes looked directly into mine. We saw each other.

Waiting for the eye patches to come off post-surgery was torture. Her suck was strong. She emptied each breast like it was the last bit of oxygen on the planet.

When the eye patches finally came off. The right pupil turned inward, unable to look toward me. I could only see white in the place of a well-formed brown pupil. On all counts, the right side of her body was more injured during the birth interventions.

But after years of alternative treatments, she regained vision in her right eye. She could read, identify colors, and expand her visual mobility.

I’m not a vision specialist but I have learned to look outside of prism/prison cells for what works.

The SOCIAL DILEMMA that we all face is harming her eyes. Since the pandemic, it has been exceedingly more difficult for her to relax her cell phone usage. I saw it happen. My withdrawing her phone use makes me the enemy. She became hooked in a false world of connections and images that are elusive and robbing her of her inner sensibilities. I feel the backlash.

Have you seen the excellent Netflix documentary — The Social Dilemma?

I feel the impacts of false friendships — of disconnect, of control, of addictive patterns seeping into every membrane of humanity — of the yearning to connect and belong.

I also know there is some goodness in it. Shadowy and shady … perhaps?

I’m with her as she slowly takes in these reminders, to see how we can recover vision in her right eye. It’s brutal at times as our world is moving beyond what some of us consider a vision of sanity.

In support of my daughter and the people that work in our home, we have become a cell phone-free sanctuary. Soon she will receive some other resources including a new service dog.

One thing she made clear was, “This is who I am. Stop trying to change or fix me. I am already working hard to accept who I am in this confusing world. I’m doing my best. Leave me alone.”

This is strong. She is strong. She deserves.

No one wants to be fixed or to be told what is not working in their personhood. It is their personhood.

Who gets to decide?

I could say much more about this but I will remain with this rawness, listening, feeling, and allowing perception to shift.

My daughter is forever teaching me to see with new eyes.

I absolutely love and cherish the person that she is.

PS: Remember we can always focus on strengths rather than protocols of pathology that eagerly pass out tiny slips of paper to magnify capitalistic interests.

Thank you for seeing beyond labels where recovery happens, and choosing to celebrate the uniqueness and preciousness within life.