Learning to See Again
Five years ago, on this very day, I was diagnosed with anterior and posterior uveitis, an inflammatory disease that produces swelling and destroys optic tissues, in both eyes.
For weeks leading up to the diagnosis, I made the grave mistake of ignoring my symptoms. As a young professional breaking into the workforce, my health took a backseat. It was easy to assume the blurred vision, endless cascade of floaters, numbing migraines, and tunnel vision were simply inconveniences with an easy fix. Maybe just dry eyes or too many long hours spent in front of my computer screen in my contact lenses. It wasn’t until I was sitting 10 feet away from my father, glasses on, when it occurred to me that I couldn’t make out his face. Something was wrong.
Fortunately, my parents were able to get me in for an optometrist appointment with a family friend. That same day he referred me to an ophthalmologist and both offices worked to ensure I would be treated, despite my lack of health insurance at the time. I was sent home with pupil-dilating eyedrops and prednisone, along with instructions to rest and stay indoors, accessorized with sunglasses on at all times. I was to return the following week for a quick follow-up and the promise that this would all clear up in short time. Spoiler alert: things did not improve.
In fact, each time the infections started to clear, I would relapse yet again. This didn’t mean anything to me at the time and I was too naïve or possibly fearful to ask questions regarding the implications. But with endless appointments, incessant blood draws, bloated moon face, the apparent farewell to contacts and my new ritual of 24/7 glasses, not to mention the cryptic responses to my now very serious questions, my irritation began to surge. It was almost laughable.
Then, the worst. Inexplicable patches of white hair sprouting all over my scalp like weeds. Followed by a nightmare for any young woman: the loss of three-quarters of my hair volume as the so-called treatments progressed. It also didn’t help that my rheumatologist spent the majority of our appointments flippantly assuring me that I was crazy. My body was changing. Nothing was working. I was given no answers. At home, my parents incessantly nagged that I had been the one to induce my uveitis every time I glanced at my phone in the dark. It was enough to drive anyone mad. Once, the rheumatologist nonchalantly wished a Happy Birthday just seconds before announcing I’d likely never recover and would be on medication for the rest of my life. Happy Birthday, indeed.
Months later, I was promoted from intern to full-time employee, granting me access to better insurance. I switched my healthcare team to a more equipped uveitis specialist and found a sympathetic rheumatologist. But even though I’d finally surrounded myself with a capable team, the damage was already done. The threat of this disease had destroyed any semblance of confidence I had left. As if on time, just a few weeks later, I learned that the scarring in my eyes had become so severe that the truth of my situation became hard to ignore. If I relapsed again in just the wrong — or right — spot, I could become permanently blind. I was 23.
From that point on, everything was an ironic blur. I vaguely recall phoning my manager, explaining that the visit went poorly and I wouldn’t be returning to the office. I found my sister and mourned in the middle of some Manhattan Midtown street. I spent the rest of that day buried under my dog Loki. Everything felt hopeless. Time unraveled and swallowed me whole. But at the start of the week, I threw myself into my job, determined to gain control over at least one thing in my life: work. My recent promotion took on new responsibilities and I was fixated on proving I earned it. I resolved that this illness would not define me, thus, out of sight — out of mind. If I just swept the real issue under the rug, as I’d been taught growing up in a Chinese-household, things would surely get better.
I spent the next years of my life succumbing to a bitter, trapped, and desolate version of myself, allowing myself to believe that my only worth as a human being was directly tied to the value I had as an underpaid employee. Childhood lessons that if I wasn’t the best, then I wasn’t anything coursed through my veins. I was now a cog in the machine, pushing away concerned friends, sabotaging relationships, forbidding myself from having any real hopes or dreams for the future. I told everyone I was fine. This was just life. Everything had already been predetermined. And I didn’t see the problem. What did it matter? I’d be blind soon enough. Not even an alcohol-fueled, tear-driven, late-night intervention with a friend and her mother in the backseat of an Uber would cause a stir. It was time to get back to work. If I was consumed in all the minute intricacies of a project, my mind wouldn’t have time to wander. To mull over reality.
But maybe there was still a part of me longing for help. I found myself in a new job at a company that claimed they were in the business of helping, not selling. Being in a large agency where they supported NAMI (National Alliance on Mental Illness), encouraged mental health days, and where colleagues spoke candidly about therapy was refreshing. The brand’s MS patient ambassadors’ words of empowerment finally struck a chord. Things were changing.
And like clockwork, my healthcare team became optimistic. I had stabilized and would be able to taper off my immunosuppressants. My tunnel vision widened up a bit. A window into the future cracked ajar. Out of habit, I continued my workaholic nature, proving myself an invaluable employee and was awarded yet another promotion. I was happy and proud of my accomplishment, but I still felt a tinge of emptiness.
Despite some internal debate, I dragged myself into a therapist’s office. Something was telling me that the ways I had been handling and coping just weren’t working anymore. Suddenly, this was bigger than my illness and reached further back into the depths of my childhood. It wasn’t until after I had spent the entire session bawling my eyes out when the therapist asked “So, how long do you think you’ve been depressed?” Winded, the trajectory of my life flooded in. The words of my friend’s mother and the drunken night resurfaced: “She’s seriously worried that you’re going to hurt yourself.”
It’s funny how we can be so blind about ourselves when denial is rooted in your marrow, after centuries of likeminded avoidance. All too often we’re afraid to speak out on mental health issues, especially in Asian communities where there is a larger stigma associated with them. The shame and thought of losing face to others in the community is a weakness and detriment to a family’s social status, causing many to avoid reality. Hide it from the community. Hide the troubles from your family. Bury and stow it within yourself. But you can’t just get over these issues, you have to do the work. Otherwise, they fester, they grow, they become a life-altering change — like turning a blind eye to the blatant symptoms of uveitis.
Therapy has been an anchor for me. I never did end up physically hurting myself, but the emotional destruction I caused was avoidable. I’ve been working through those scars. I’ve learned to have a voice, to share with my family my epiphanies and to have an open dialogue about how we can all utilize new tools to have better mental health practices. My parents and extended family members are still wary of talking to people about therapy or considering it for themselves, but I’m finding that it’s exceedingly necessary to have that conversation outside of the home. Keeping the awareness and discussion behind doors won’t move the needle towards normalization and remove the stigma that prevents other people from seeking the help they need. It’s important to know that there’s nothing wrong with not being okay. There are people out there, even those you would not expect, who will be there for you and have a hand ready to get you back up on your feet.
I’m grateful to the friends who stood by and supported me at my worst, when it felt like I could break apart into a million pieces at any moment. These days I know my value is tied more to my character and the relationships I build, and that it’s okay to speak my mind, to say no, and that work-life balance is essential for everyone’s mental well-being. Most importantly, it’s okay to take time for yourself, to disconnect and recharge. Because mental health awareness doesn’t just happen during the month of May or during Suicide Prevention Month in September; these are all ongoing, yearlong struggles many people face. It’s more important than ever, especially in the midst of a global pandemic, to check in with your friends, families, and loved ones. Ask the tough questions. Speak up if you’re hurting. Remember to be compassionate and empathetic. Your words and understanding could help someone someday. Your words could even help yourself.
