This seems to be where my journey (one of several) will begin. In the midst of planning a wedding, figuring out where to move together, and working out how life will look after “I do,” something major has happened.
First, understand why I am here because I have been debating whether to open up about this, but in the end writing has always been my safe haven. It’s the one way I can release what’s bottled inside of me, the one way I can empty myself without fear of repercussions because this is me. Pure and simple. When I first opened a website, I promised one thing: the truth, knowing that sometimes it could be dirty or ugly … but it would always be the truth. Honesty for you, but mainly for me.
Because writing is how I find a way to get back to myself. It is my food, air, heartbeat. Writing is how I survive.
Therefore, right now, writing is the one fail-proof cure I can prescribe myself in order to breathe, relax, and become myself again …
So how do I say I start … because this is something I do not want to admit … yet is also the reason I am writing.
*Deep breath* Here goes …
I think I am going blind in my left eye. Does this sound insane? Yes. It this is true. Absolutely. Am I scared? Completely — so much so that I may delete this paragraph, this post to still pretend this isn’t happening. I may. I haven’t decided.
But, if I keep this post, I want to explain … because maybe (if I had any readers) someone can help. Maybe someone knows of someone … or experienced this firsthand … or … something …. Maybe there’s help …
My story then. Here goes:
It began Monday, April 29. I woke when it should be illegal (and by that, I mean shortly after midnight) to report to work. I’m a live news reporter at a news station in Virginia, and my shift is from 2:30 a.m. to 12:30 p.m. This morning was the same as all before … except for two aspects — I had a splitting headache and (the most important part), my vision was fuzzy in my left eye. I’ve now described this many times — in my head, to family members, to doctors — and the best way I can put it is this: Picture a scorching hot day, similar to the type where heat waves radiate off pavement. Then picture it raining. After the rain — a haze. The world appears fuzzy, unfocused. That’s what the vision in my left eye.
All day, I kept rubbing my eye, thinking maybe something was in it — A good rub would refocus my sight. Or maybe I just needed sleep — Working an overnight shift, sleep is a rare keepsake. Like water pouring from your hands, I can never hold onto it tight enough, contain it, keep it. In fact, for the past few months, I’ve been getting an average of about four to five hours of sleep a day … which may not sound too crazy until that becomes your actual sleep pattern. And I won’t detail the ill mental and physical aspects that go along with this but I will say I truly believe this is killing them. So resting my eyes — any form of sleep — is what I thought I needed, and this would also get rid of my headache. That means for the first time in a long time, that night I nourished my body and went to sleep early, which provided me with about eight hours of rest.
Tuesday and I was up in the dead of night again, getting ready for work … only I realized my left-eye vision was worse. I saw bursts of white, making parts of my vision translucent. It was like rubbing your eyes too hard and those flashes of white light that appear — they remained despite rapidly blinking or rolling my eyes multiple times. The white patches did not go away. Every image was also slightly doubled … as if all I looked at had a duplicated image over it except that image was moved less than one inch to the side, like a close shadow — but the same color, same features. And still, the hazy vision remained.
This is when I called my primary care doctor and scheduled the next available appointment for Wednesday. I thought (with silly hope), “Maybe I’ll actually get glasses.” See, what I haven’t said yet is that for the 29 years of my life, I’ve had overly perfect vision. Some describe it as “hawk-eye vision.” I can see practically anything, read anything — close or far — crystal clear. I’ve dreamt (even hoped for, as ridiculous as it sounds) to have glasses … except now, I found myself confused. I didn’t want glasses under these conditions. I had thought, “Maybe when I begin to need help reading … ” or “Maybe when long distances become a little blurry …” but not like this. Not “I am suddenly seeing less than half of what I used to be able to see out of my left eye.” Not “Because I am suddenly and quickly loosing my sight, I forced to have glasses.” It was no longer a choice. It was a verdict.
So that was Tuesday. My poor vision stayed, and I went to bed early again, convinced sleep was the cure. If only the cure were that easy …
I closed my right eye immediately in the morning to test my left-eye vision … only to find I had an even fuzzier, odd view of the world. It was as if my eyes were cross-eyed — I saw a light image … or the real image … floating nearby. Along with this, it was as if a white film — like wax paper — had been placed over portions of my left eye … as if I was squinting and only a warped, faint view could be seen. I kept wanting to look at myself in a mirror to see if my eyelid was drooping over my eye, preventing me from seeing … but no, my lid appeared fine. No easy of an answer. What’s odd is when you can see normally, you don’t feel your eyeballs … but when your vision starts to go, you can. There was a distinct change and my eye was numb. Yes, I could feel my eyelid and area around my eye … but it was as if I had no eyeball-sensations. I am struggling to describe how one can “feel” a numbness, and yet here I am. Not only this, but I was also still seeing bursts of white light. I knew, if I could just remove this strange light — pull away this “wax paper” view — my perfect vision would be there, hiding somewhere.
The good news though is this day — Wednesday — held hope in the form of a doctor appointment. My sister agreed to go with me (and to this day, I cannot thank my entire family enough for trekking to multiple hour-after-long-hour long appointments). To make this part of my story shorter — This visit was scary. It started with the doctor examining me — my heart, my lungs, my eyes — and then suddenly leaving.
“This is not good,” he said. “Give me one moment” and he walked out — left the room while I remained perched on the stainless steel exam table, while my sister sat waiting in an exam chair … just left, carrying hope and answers as the door closed behind his heels. He ended up returning minutes after explaining I had an immediate appointment to see an eye doctor.
At the second doctor, a nurse gave me an eye test — the one where you put your chin on a strap and lean your forehead to a second strap. Stare at the red dot in front of you and push a button that clicks every time you see a green dot around the red one. We began with my good right eye — I aced the about-five-minute test. Now time for my left eye: The green dots were faint so I knew this test would be hard, but I was prepared. Chin and forehead on the straps. Look at the red dot … Look at the red dot? … The red dot? For my entire being I could not see the red dot. I could feel myself beginning to shake.
The red dot isn’t the test, I told myself. The green ones are. “I um, cannot see the red dot,” I announced, calmly.
An instant response from the nurse: “Oh, it’s okay, hun. A lot of people cannot see the red dot.”
Liar is what I was thinking. The word kept repeating in my head, Liar. Liar. Liar liar liarliarliar … Then, I inhaled and said, “I think I’m going to cry.” The world paused, it felt. It was as if I could hear my sister say, Oh shit in her head and so I could hear her confirm there was a big problem. And that’s when I cried. I cried because I was scared and because I knew they were scared. I cried because this was happening, and I cried simply to have an outlet to cry. As if my tears proved my innocence, as if now they believed, my sister rushed over with a tissue in hand, palm rubbing my back, and calm words in my ear while the nurse explained I must try.
“Try to see if you can see any of the green dots,” she explained.
So I tried. The five minute test grew longer. Instead of seeing dots about every two seconds, I probably clicked a total of 10 times in five minutes. With every lack of click, my heart clicked … and clicked, pounded against my lungs and ribs. Then, it was over. Finally. Time to move into a second room … and time for the doctor.
He asked me to read that chart with letters on it.
How I’ve always loved doing this — In the past, I’ve viewed this as a chance to show off my vision, be the rare case the eye doctor sees that is beyond perfect. “E” I announced with my left eye closed. “P-E-Z-O-L-O-F-T-D!” I smiled, not needing his approval, knowing my score for the smallest-font line.
Left eye now … and I should have been prepared but I could feel my heart pick up again, feel the shaking in my stomach start. “I … um, I know there is an “E” from memory … but I, um … I cannot see anything … only the white shape of the sign. The sign looks blank though.” My sister later admitted to my mother that this was when she knew something was terribly wrong — This was when she could envision what I saw: nothing.
The doctor gave me a black tool to cover my left eye. It had little pin-prick holes in it. “Does this help? If you find one pin-prick hole to look through?”
“No. It’s the same,” I told him. “I see nothing.”
The tests stopped there. The doctor seemed … unnerved. A healthy, 29-year-old girl with perfect vision days before wakes one morning and now sees practically nothing out of her left eye.
He recommended me get a second opinion — a retina specialist … and by “recommended” I mean he called the retina specialist himself — that second — and scheduled an appointment for me in the form of “leave now and he’ll take you as soon as you get there.” I had never seen a doctor move so quickly. He said the instant appointment was “because your pupils are already dilated” . . . but I knew that was only part of the reason. Pupil dilation can happen at the drop of an eye bottle. My lost vision could not.
As we were walking out, the eye doctor stopped me. “I … I want to test the colors you’re seeing,” he said, tripping over his words, working in the hallway. He held up a bright red pen. “What color is this — with your right eye only?”
“Red,” I answered.
“And your left?” he asked.
“Oh …. It’s more brown. A dull red — a dull, dirty red.” I removed the hand covering my right eye and with my left eye closed, looked at the cherry red pen again. The dingy color vanished. That’s when I realized I needed to add “reduced color” to the list of what I was experiencing.
With a push to head to the specialist, we left and I tried to be happy. Answers — I would get instant answers today. As my sister and I walked out, I asked her, “Why do you suppose he didn’t prescribe glasses? Or maybe this next doctor will until they figure out why this happened.” She hesitated. I kept prompting her. Finally she explained:
There was no vision to improve upon. Glasses only helped if there was some type of vision. I had none.
Silence again. She kept her gaze straight, showing me she wasn’t concentrating on my reaction. How stupid I felt — Stupid because she is younger than me but wiser. And because I was worried I need glasses … when, the truth, I should have hoped for them.
My sister drove me to the retina specialist’s office next. Paperwork again. Same questions. Six eye drops. Same quizzes from nurses. Except each time, we had to return to the waiting room so it became more as this: Paperwork. Sit and wait. One round of questions. Please wait. Lean your head back for the drops. You can stay here. Round one of tests. Have a seat there.
We waited … and waited … a total of almost six hours for two doctors that day. And while we waited this time, we took pictures of the images of my eyeball displayed on the computer screen next to us.
Finally, the elusive doctor appeared. He flashed a light in my right, then left eye … and was done.
“I believe you have optic neuritis … but I suggest seeing someone who specializes in the optic nerve.”
Questions: What is optic neuritis? Will my vision come back? Will it affect my other eye? What caused this? Could stress and an overnight shift have done this to me? … I kept asking, asking, asking. Give me something, please, I silently begged. And while he explained, he always started with, “Well, if you have optic neuritis … ” as if this he were humoring my imagination, as if we were wasting time discussing something random — as if I grew up in China instead of the United States.
Still, I gathered that optic neuritis is a condition affecting the optic nerve — or the nerve connecting the eyeball to the brain. The doctor said optic neuritis means my optic nerve is “inflamed — not infected — but inflamed.” Why? It’s unknown. How did it happen? Unknown. How can we fix this? Unknown. Unknown.Unknown.Unknown. There was a big pile of emptiness in front of us. After about four hours of waiting for Doctor Three, he vanished for five minutes.
I was told my next move was to meet with a special optic neuritis doctor. “You don’t make the appointment — He calls you,” Doctor Three said. “He’s very meticulous and looks over all documents himself — not his secretary. He’ll schedule an MRI to determine if this is what you have.” Then a pause before: “And I should tell you, he’s — well, busy. He’s a very hard man to get in touch.” That last part was said as if I should feel blessed to get a call back. By that time, feelings of blessed and all positive had swept out the room. I left feeling hopeless as if I had wasted five and a half hours of my life and in turn, decreased my sister’s lifespan as well.
On the drive home, I didn’t realize I was crying until plump and hot tears slid down my cheeks. I asked my sister, “Do you know what color people who are blind see?” She was silent for a couple of minutes — showing patience and strength when I lacked it, giving me a chance to talk and explain. “I thought for the longest time, people who are blind see black — blackness everywhere. The blackest of black — like a pit. Darkness and nothing but … and I always thought, How incredibly sad that must feel … until I realized they do not see black. They see white — the most bright, blinding white. People who are blind see only white.” And here I stopped. Cried some more. She (in her ever-so calm voice) said she imaged that because “people who are blind have to wear special glasses when they go outside. I always figured it was because the sun made everything even more painfully bright.” And I think that’s true … because that’s now how I feel.
When we got home, I pushed everything aside. Crying wouldn’t help. I needed to sleep. Work tomorrow — That’s all I would allow myself to think. Maybe my vision would clear by then.
Thursday. Oh, this was a bad day. I woke with the same decreased vision. Went to work because — as Doctor Two explained, “You can still drive legally in fifty states, including Virginia. Just be more cautious than normal.”) I tried to ignore all I was thinking and feeling. I entered the newsroom and researched my story for that day. Left in the live truck with my photographer. Helped set up our live shot. Then waited in the live truck for the newscast to start. 20 minutes — 20 minutes until show. I knew what I shouldn’t do … but the temptation, the questions, the confusion was too much. I pulled out my cell phone, opened a webpage and started researching for the first time. “Sudden vision loss” I typed and Google delivered: “Considered emergencies.” “Painless.” “Common among patients of different ages.” “Demand urgent attention.” “Double vision.” “Partial or complete loss of vision.” Stories of young people in college who had partial and sudden vision loss … then lost sight forever. Forever. “Seek help immediately.” And what was I doing?! I was waiting for a newscast, waiting to do a report about electric bills decreasing by four percent. I was … doing nothing.
I’ll admit it, I had a panic attack. I forgot phone numbers — even forgot I had them listed in my cellphone. All I could do was wait and in those moments, I began to cry — sob — and shake uncontrollably. I couldn’t breathe. I couldn’t think. All I could do was stare at the time on my phone and watch the minutes tick by. 4:26 a.m. 4:27 a.m. — Three minutes until I’m live on air. What if my left eye lid was drooping … and I didn’t notice but everyone at home watching did? What if my eye wasn’t even looking at the camera? What if my eye is a cloud of white? What if … 4:28 a.m. — Two minutes until I’m live on air. I saw my photographer get out of the live truck and stand behind the camera, wait for me. I made no motion to move. I couldn’t even look up. I was frozen. I cannot do this. I have to go home. Now. I have to leave, I announced in my head. My photographer paced, confused, then went back in the truck. I then called the newsroom back — gasping for air, hysterical. I whisper-screamed, “I CANNOT DO IT! OH-MY-GOSH! I CANNOT GO LIVE. I CANNOT WORK. I NEED TO GET OUT OF HERE! I NEED TO LEAVE! I HAVE TO GET HOME.” I requested all of my live hits to be killed … and they were. Through a quiet voice, one of my managers gave me what I needed to hear: “It’s okay. You can go home.” I then explained to my photographer what I didn’t want anyone to know because I didn’t want anyone to judge me — It is embarrassing to lose your vision so young. Yet, he was even more understanding. We talked and at one point, he even held my hand to stress that I needed to take care of myself.
When I got home, I opened my computer and researched “Sudden loss of vision” as if the answer online would disappear and never exist again. One possibility lead to another:
- Optic neuritis — Inflammation of the optic nerve
Causes: autoimmune disorder, multiple sclerosis/demyelinating disease, infections, bacteria.
- Macular degeneration — Deterioration to the macula or center of the retina
Two types: wet — leaky blood vessels in back of eye; dry — blurry vision and blind spots.
- Diabetic retinopathy — Damage to the retina
Happens with diabetes.
- Retina detachment — Retina peels away from tissue.
- Neuromyelitis optic — Inflammation of eye and spinal cord
Central nervous system disorder; need MRI scans, steroid medication.
More and more information poured from the computer screen. I waited until 5:30 a.m. to call my mom.
“Mama. I’m researching and losing your vision is more serious than the doctors are making it out to be. Everything suggests to act immediately. I think it is a bad idea to wait for a doctor to call me. Will you go with me today to every eye doctor appointment we can make to get multiple opinions?”
She said I took the words right from her mouth so we (my mother, fiancé James, and me) headed to a Second Opinion Eye Doctor.
Many tests were done and when the doctor was finished, he explained my pupil was not responding to light the way it should and something else was not acting normal … which is why he thought I had optic neuritis, but that he would like me to see a specialist in that field. He, too, talked of the elusive optic neurologist, but explained he would prefer me see someone sooner to get an MRI scheduled sooner. (By the way, on the way here, the MRI people called from Doctor Three’s office, asking if I could come in for an MRI in a month. A month but I was getting married then.
“Are you claustrophobic?” the woman asked.
“Yes — I do not like tight spaces,” I said.
“I’m not asking you if you like tight spaces,” the woman snipped back. “I’m asking if you are claustrophobic?”
I don’t do well with snippy. “If you’re asking if I don’t go in elevators, avoid riding in air planes, and never get in tight spaces — Then yes, I am claustrophobic,” I tartly answered.
She simply said, “Oh. Well, I’ll call them back and say you’re claustrophobic.”
“Yes. Please do that,” I said, still curt.)
Back to my story: Doctor Four scheduled not only an appointment for me to see an optic neurologist the next day, but he also said he would get the MRI visit scheduled soon for me. We left breathing slightly easier.
It was Friday, and my dad volunteered to go with me this time, along with James who refused to give up his seat next to me. Some of the secretaries before commented that I had a lot of people with me but I didn’t care. I looked each of them in the eye (with my one good eye at least) and said, “Yep. They are my moral support. When you suddenly go blind in your 20s, you prefer to have those you love with you.” That shut them up.
So Doctor Five, my optic neurologist who proved to be great. Everyone was thorough and performed tests on me that directly and indirectly related to my eye. Things like the eye test that I pictured above, along with others such as a balance test (walking and standing straight with my eyes closed). They asked question after question … and I loved answering. I wasn’t just a number here; they wanted to know about me. “Do you find ticks often where you live? Have you been bitten by a tick? Your family has a history of diabetes, you said? Your sister suffers from headaches often?”
After another an almost five-hour-long appointment, my bow-tied-wearing doctor said — with finality — “You have optic neuritis.” Someone finally handed me what I had paid copay after copay for: An answer. He confirmed optic neuritis is inflammation of the optic nerve — or nerve connecting the eyeball to the brain. He said you can actually see the optic nerve when looking through eyes using a light … and on me, it appears normal, which means I have optic neuritis retrobulbar. I felt like he was speaking Latin, but he translated all words in overly-detailed descriptions…
Why did it happen? That’s an answer many doctors are working to find right now.
How can you cure it? There’s no proven cure.
Will my vision return? In most cases, yes — 90% of vision returns.
How long will I have the lack-of-vision? In most cases, 12 weeks at the earliest or 20 weeks at the latest.
Will it go to my other eye? That’s highly uncommon.
What is the cause? It’s unknown, although it could be from an autoimmune disease. That’s when he firmly stated he did not need an MRI to determine I had optic neuritis. “I know you have this — An MRI would just show physical proof.” But … always a but … he did suggest the MRI because of this. He explained the MRI would scan for “white matter” — basically white specks along the nervous system. Then, he explained if there is more than one speck — at more than one moment in time — this would diagnose me with MS, or multiple sclerosis … which is an autoimmune disease affecting the brain and spinal cord. He said if this white matter is found, he would recommend me take IV steroids … which have been proven to reduce the chance of developing something like this again later in life. From 25% to about 12%.
“What would something like this again be?” James wanted to know. And that’s when the definition of multiple sclerosis came out …
Multiple sclerosis is deterioration of nerves — tingling in parts of one’s body, numbness in one’s limbs, a hand not cooperating, a leg being dragged. Paralysis. My doctor explained that if I have MS — which again the MRI will prove — over time and at various points in time, these different symptoms could occur.
And basically that was it. I was handed an invisible box full of answers — some direct, some hypothetical, some knowledge simply to hold. His secretary confirmed they both wanted me to get an MRI soon so that it would better inform everyone of what I may be facing in my future — so we can battle against it.
“I — or the MRI people — will call you Monday,” she promised. Handing me a note with a prescription for my MRI-claustrophobia-calming drug, directions to where I’d be headed, and business cards, we scheduled a follow-up appointment with my newfound doctor that was three weeks away. My dad, James, and I left, with our invisible answer-box tucked under my arm while phones rang from every concerned family member. Part of me felt full of hope — I have a diagnosis. I can get better. I will be able to see — to be myself — again. I have so many people who care — people who took days off of work to sit with me for hours in doctors’ offices, people who want to be updated with every bit of news. My amazing support system. My family.
Yet, I confess, part of me is scared. What if I’m the 10% that doesn’t get my vision back? What if I’m the uncommon girl who gets optic neuritis in my other eye at the same time? … And what if I have MS? Again, I should have hoped for glasses all along. Multiple sclerosis terrifies me. It’s so strange to think about diseases when they suddenly walk up to you, hold out their hand, and introduce themselves.
“Hi, my name is MS. I don’t care what your name is, but we’re going to become very close.”
My heart tears for every MS patient out there. How could I have been so consumed in my own life to realize there is a mass of people who have been diagnosed with this. I feel guilty, foolish, embarrassed, stupid.
They say people are given what they can handle. That’s one of the things I think about often — only what they can handle. Can I handle being blind? Handle MS? I feel like I should know, but I don’t. Why? When will I know what I can handle? I want to know now … and yet I don’t. Truthfully, I just want to go back to how I was — go back to planning a wedding, imagining what James’s and my apartment would look like, to talking about my sister’s latest wedding plans. I just want to go back. I know this is silly because that’s supposed to be one of the grand aspects about life — You can never go back, only forward. Yet, I don’t want to move ahead. I want to get married, without a doubt, but I don’t want to plan anything or do anything else for it. I don’t want to work. I don’t want to pretend I’m feeling fine. I don’t want people to feel like they have to walk carefully around me or feel obligated to ask how I am. I just want to go away somewhere for awhile — to slip quietly away.
So that’s my story. I think I’ve told you everything, at least for now. Maybe I’ll post that too as I learn it. I think I’m going to post this writing though — I truly do. It’s about 5:15 a.m. Everyone’s asleep . . . and after a failed attempt at sleep myself, I’m writing. Writing because this feels right — It feels good. Because after I’m done writing, I can breathe. And maybe sleep. And maybe start a new day. Baby steps.
People are only given what they can handle …. What will I be handling?