This seems to be where my journey, one of several, will begin. In the midst of planning a wedding with my amazing (how this word doesn’t even 1/1,000 of a way sum up James) fiancé . . . figuring out where we’re going to move together once we’re married . . . and working out the details in my head of where our life will lead us after “I do,” something major has happened. For the purposes of this post, I won’t go into much detail now but end this on, “I may open up about this later . . . ”
So. Back to the top: Here I am after something happened Monday morning. In truth, I have been debating whether to blog about what I’m going through, but in the end, writing has always been my “safe haven.” It’s the one way I can release what’s bottled up inside of me. The one way I can say what I truly feel and not worry about the repercussions of what I (or others) think. This is me. Pure and simple. I promised you the sometimes dirty, ugly truth . . . and that’s what you’ll get. Honesty . . . for you, but mainly for myself. Because writing is how I find a way to get back to myself. It’s the one way I can relax. Writing to me is like food, air, a heartbeat. Writing is how I survive. So with that said, this is the one fail proof cure I know to breathe, calm down, and become myself again . . .
. . . How do I say it? It’s something I don’t want to admit. . . .Yet, that is why I’m writing. I thought about holding this part until the end of my post . . . like a joke, the punchline saved for the finish. Then again, this is anything but a joke. . . . And still, laughter is the best medicine, they say. To find humor in what’s happening? I try. I truly do. . . . *Deep breath* So. . . . I think I’m going blind in my left eye. . . . I hear the “dun-nuh duh duh” of the drums after a joke being told . . . but the sad thing is, this is true. Scary? Completely. So much so I may delete this paragraph, this post and still pretend it isn’t happening. . . . I may. I haven’t decided right now.
But, saying 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 themselves . . . or . . . something . . . and they can help . . .
My story then. Here goes:
It began Monday, April 29. I wake up when it should be illegal (and by that, I mean shortly after midnight) to report to work. And everything was the same this morning . . . except one, I had a splitting headache and two (the most important factor), my vision was fuzzy in my left eye. I feel like I’ve described it so many times — in my head and to family members, doctors — that the best way I can put it is: Picture a scorching hot day, similar to the type where you can see the heat waves radiate off pavement. Then picture it raining. After the rain — a haze. Everything seems fuzzy, unfocused. That’s what it appears like out of my left eye.
All day, I kept rubbing my eye, thinking maybe something was in it . . . maybe a good rub would refocus things . . . maybe. And maybe I just needed sleep. Working an overnight shift, sleep is a rare keepsake. Like water pouring from your hands, I can never seem to hold onto it tight enough, contain it, keep it. For the past few months, I’ve been getting an average of about four/five hours of sleep a day . . . which may not sound too crazy . . . until that’s actually your sleep pattern. I almost want to dare you to try . . . except I would never wish the ill mental and physical aspects that go along with that on anyone. Anyway . . . sleep was what I thought I needed. Rest my eye. Get rid of my headache. So, for the first time in a long time, I went to sleep early, which provided me with about eight hours of rest.
Day Two: Tuesday. Up in the dead of night again, getting ready for work . . . and I realize my left-eye vision is worse. I see bursts of white, making parts of images translucent. It’s like when you rub your eyes too hard and you see flashes of white . . . which remain until you rapidly blink multiple times. Except when I blink, roll my eyes, it doesn’t go away. Every image was also slightly double . . . as if each item, thing I looked at had a little less than an inch of a duplicated image over it, like a close shadow, but the same color, same features. And still, the hazy vision remained.
Knowing rubbing my eye wouldn’t help, I called my eye doctor and scheduled the next available appointment for Wednesday. I thought, “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 far away . . . and what’s closer to my eyes has also been crystal clear. I’ve always dreamt (even prayed, as horrible as that sounds) to have glasses . . . except now, I found myself confused. I didn’t want glasses under these conditions. I thought, “Maybe when I begin to need help reading . . . or maybe when long distances become a little blurry, I can get glasses” . . . not like this though . . . not “I am seeing less than half of what I used to be able to see out of my left eye.” Not “because you’re loosing your sight, you’re forced to have them.” No longer a choice. A verdict.
So that was Tuesday. My poor vision stayed, and I went to bed early again that day, convinced sleep was the cure. If only the cure were that easy.
Day Three: Wednesday. I closed my right eye first thing in the morning to test my left-eye vision . . . and found 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 . . . like I was squinting, only a faint view. I kept wanting to look at myself in a mirror to see if my eye lid was drooping over my eye, preventing me from seeing . . . but no, it appeared fine. Of course I wouldn’t be granted that easy of an answer. What’s funny (if you call it funny) is when you can see normally, you don’t “feel” your eyeballs . . . but when your vision starts to go, you can. It’s as if my eye is numb. Yes, I can feel my eye lid, area around my eye . . . but it’s as if I have no eyeball-sensations. 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,” my perfect vision would be there, hiding.
The good news though is this day — Wednesday — held hope. Today was my eye 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 appointments). To put this part of the story in a shorter version — This visit was scary. It started with a nurse giving 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 click the “clicker” 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. There was one wrong click — an extra one, but I even knew where I did it because I said, “Oops.” Now time for my left eye. The green dots were faint so I knew this test would be hard . . . but I was prepared. So chin, forehead on 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; the green ones are,” I told myself. “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.” That was what I was thinking. The word kept repeating in my head, “Liar. Liar. Liar liar liarliarliarliar . . . ” 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. As if I could hear her confirm there was a big problem. And that’s when I cried. Cried because I was scared and because I knew they were scared. 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, Trista rushed over with a tissue in hand, palm rubbing my back, cooing calming words while the nurse explained I must try. “Just try to see if you can see any of the green dots,” she explained. So I tried. The five minute test got longer. Instead of seeing dots about every two seconds, I probably clicked a total of 10 times. With every lack of click, my heart clicked . . . and clicked, pounded against my lungs, 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. I’ve viewed it as a chance to show off my vision, be the rare case the eye doctor sees that’s 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. Left eye now . . . and I should have been prepared. I could feel my heart pick up again. Feel the shaking in my stomach start. “I . . . um, I know it’s an E from memory . . . but I, um . . . I cannot see anything . . . but the white shape of the sign. It looks blank.” Trista later admitted to my mom 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 holes to look through?” “No. It’s the same. I see nothing.” The tests stopped there. . . . The doctor seemed . . . unnerved . . . about what was happening to me. A healthy, twenty-nine-year-old girl with perfect vision before, wakes one morning and now sees practically nothing out of her left eye. He recommended me get a second opinion, see a retina specialist . . . and by “recommended” I mean he called the retina specialist himself — that very second — scheduled an appointment for me . . . an appointment that was “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 may be only two percent of the reason why. Pupil dilation can happen at the drop of an eye bottle.
As we were walking out, he 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?” ” . . . 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. The dingy color vanished. That’s when I realized I needed to add “reduced color” onto the list of what I was experiencing.
This eye doctor passed me off to a specialist so as we left, I tried to be happy. Answers. I would get instant answers today. As Tris and I walked, I asked her, “Why do you suppose he didn’t prescribe glasses? I mean, maybe this next doctor will. Just 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 help if there is some type of vision. . . . Silence again. She kept looking 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 now, the truth is, I should have prayed harder for them.
Trista drove me to the second eye doctor’s office. After about an hour and a half eye appointment with Doctor One, we were starved and picked up McDonald’s on the way. Eat and run . . . or eat and drive. Then we were there. We went through the paperwork again. The questions. The six eye drops. The quizzes from nurses. Except each time, we had to return to waiting room in between. 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 . . . and waited. 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.
And 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 you see someone who just specializes in the optic nerve.” Questions. What is optic neuritis? Will my vision come back? Will it affect my other eye? Why did I get this? What caused it? Could stress and my crappy overnight shift have done this to me? . . . I kept asking, asking, asking. Give me something, please. And while he explained, he always started with, “Well, if you have optic neuritis . . . ” as if we were wasting time discussing something random — like if I grew up in China instead of the United States. I gathered that optic neuritis is a condition affecting the optic nerve — or the nerve connecting your eyeball to your brain. He 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. It was one big pile of emptiness we were staring at. After about four hours of waiting for Doctor Two, he vanished after maybe five minutes.
I was told my next move was to meet with a special optic neuritis doctor . . . except (get this — it’s really good) “you don’t make the appointment; he calls you. 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. . . . And I should tell you, he’s . . . well, busy . . . He’s a very hard man to get in touch with.” That last part was said dripping with love, as if I should be so lucky to even discuss this Mr. Felton guy in conversation. As if I was so blessed. Well lady, blessed and anything positive swept out the door right about now. I left feeling hopeless, like I had wasted five and a half hours of my life for nothing. And that I had decreased Trista’s poor life by an equal portion.
On the drive home, tears slid down my face, plump and hot. I didn’t even know I was crying until I felt the tears pour down my cheeks. I asked my sister, “Do you know what color blind people see?” She was silent for a couple of minutes, knowing I was thinking . . . giving me a chance to talk, to explain. See, people may say a lot of things about my sister, but the truth is she has always been my number one ally. She is everything good in my life. She has never left my side . . . and I know, no matter what hell the world unleashes, she is one person that will always be there. So she waited for me, as she has her whole life — showing patience and strength when I lack it. “Tris. I thought for the longest time, blind people see black — black 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 it’s not black. They see white. The most bright, blinding white. Blind people see only white.” And here I stopped. Cried some more. She (in her ever so calm voice) said she imaged that because “blind people have to wear 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 won’t help. I needed to get some sleep. Work tomorrow. That’s all I would allow myself to think about. Maybe my vision would clear.
Day Four: Thursday. Oh this was a bad day for me. I woke with the same decreased (or nothing-ness) vision. Went to work. (PS-As Doctor Two explained, “You can still drive legally in fifty states, including Virginia. Just be more cautious than normal.” How lucky I am! Thanks an uber much, doc!) I tried to ignore everything I was thinking and feeling. I researched my story. Left in the live truck. Helped set up our live shot. And then sat in the live truck and waited for the show to start. 20 minutes. 20 minutes til 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 web page and started researching for the first time. “Sudden vision loss” I typed. And Google delivered: “Considered emergencies.” “Painless” (true). “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, sudden vision loss . . . then lost their 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 sitting in a truck . . . doing nothing.
I’ll admit it, I had a panic attack. I forgot James’ cell phone number. Forgot I had it listed in my cell phone. All I knew was “I’m at work. James is at work. Call work. Talk to James.” So I called work. One of our managers answered. “Can I please speak with James?” I whispered. Transferred. He was busy, typing. “James . . . I’m freaking out . . . about my eye.” “Did you call my cell?” Knowing this was personal and he needed to calm me away from listening ears. “Your cell? . . . Oh. (Forgot he had one in my panic) No.” “I’ll call you in a second.” I knew he was leaving his desk and taking a moment to call me in a more private location . . . so I waited . . . and waited . . . and waited. And while I waited, I began crying, sobbing . . . and shaking 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. 4:27. 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 I had a lazy left eye? I don’t know. I don’t know. What if it’s just a cloud of white on my eye? Like glaucoma? What if . . . 4:28. Two minutes until I’m live on air. Jesus, James!!! Where are you? I saw my photographer get out of the live truck, go behind the camera. Wait for me. I made no motion to move. 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 James back — gasping for air, hysterical. I whisper-screamed, “I CANNOT DO IT, JAMES! OHMYGOSH! I CANNOT GO LIVE. I CANNOT WORK. I NEED TO GET OUT OF HERE! I NEED TO LEAVE! I HAVE TO GET HOME.” I told him to tell our manager and to kill my hits . . . and he did. He hung up the phone. They killed my live shot. I called one of my managers and, through tears, explained what happened and how sorry I was. Through her always quiet voice, she gave me what I needed to hear, “It’s okay. You can go home.” So I went to the truck and explained to my photographer. Explained I didn’t want anyone to know, didn’t want him to judge me. That it is embarrassing to lose your vision so young. He was even more understanding. We talked . . . and he even held my hand at one point and stressed I needed to take care of myself.
When I got home, I opened my computer and researched “sudden loss of vision” like it was the last time the internet existed. 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 — Central nervous system disorder; inflammation of eye and spinal cord. 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 do things immediately. I think it is a bad idea to wait for Doctor Felton 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.
Thursday, my mom, James and I went to The Virginia Eye Institute.
I highly suggest the VEI for any eye problems . . . and I highly suggest the doctor I had — Doctor Robinson. They did many tests and when he was done 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 this elusive Doctor Felton, but explained he would prefer me see someone soon, get an MRI scheduled sooner. (PS-On the way there, the MRI people called from Doctor Two’s office, asking if I could come in for an MRI in a month. One, a month? And two, I’m getting married then. No and no. Then she asked if I was claustrophobic. “Yes; I do not like tight spaces,” I said. “I’m not asking you if you like tight spaces. I’m asking if you are claustrophobic?” she snipped. You want snippy, lady. I’ll show you 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.)
Anyway, back to my story . . . So Doctor Robinson scheduled not only an appointment for me to see an optic neurologist right away (as in the next day), but he always said he would get the MRI visit done just as soon for me. The three of us left breathing slightly easier.
Day Five: Friday. My dad volunteered to go with me this time and James 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 and don’t care. I looked each of them in the eye (with my one good eye . . . that was meant as a joke . . . ) and said, “Yep. They are my moral support. When you’re going blind in your twenties, you prefer to have those you love with you.” That shut them up.
So Doctor Four, my optic neurologist, Doctor Thurston. Again, great doctor . . . and great staff. They were thorough, performing tests on me that directly and indirectly related to my eye. Things like the eye test that I pictured above . . . and others such as getting me to walk, stand straight with my eyes closed (a balance test). 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 had finally handed me what I had paid co-pay after co-pay 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 everything in overly detailed descriptions. Why did it happen? That’s something many doctors are working to find the answer to right now. How can you cure it? There’s no proven cure. Will my vision return? In most cases, yes. ninety percent of patients’ vision returns. How long will I have the lack of vision? In most cases, twelve weeks at the earliest, twenty weeks latest. Will it go to my other eye? That’s highly uncommon. And the cause? It’s unknown, although it could be from an autoimmune disease. That’s when he stated firmly he did not need an MRI to determine I had optic neuritis. “I know you have this; an MRI would just show physical proof of this.” But . . . always a but . . . he would suggest the MRI still. 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 . . . 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 percent to about 12 percent. James asked what would “something like this again” be? And that’s when the definition of multiple sclerosis came out . . . which to me, is basically deteriorating nerves. Tingling in parts of my body, numbness in my limbs, a hand not cooperating, a leg being dragged . . . Gradual paralysis, is what I thought. He explained if I have MS — which again the MRI will prove or not prove — over time and at various points in time, these different symptoms could occur.
And basically that was it. He handed me an invisible box full of answers — some direct, some hypothetical, some knowledge simply to hand me knowledge. His secretary confirmed they both wanted me to get an MRI done soon so that it would inform everyone better of what I may be facing in my future, so we can all battle against it. “I’m going to call you Monday or the MRI people will call you Monday,” she promised. Handing me a note with a prescription for my MRI-calming drug, directions to where I’d be headed, and business cards, we scheduled a follow-up appointment with Doctor Thurston three weeks away.
My dad, James and I left, with our unseen answer-box tucked under my arm, stomaches growling for food, and phones ringing from every concerned family member on my side and James’. Part of me felt full of hope. I have a diagnosis. I can get better. I will be able to see, be myself again. I have so many people who care — people who took off days 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.
. . . But I confess, part of me is scared. What if I’m the 10 percent 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 prayed for glasses all along. MS 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 this whole 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 . . . but I don’t. Truthfully, I just want to go back to how it was. Go back to planning a wedding. Go back to imagining what James’s and my apartment would look like. Go back to talking about my sister’s latest wedding plans. I just want to go back. I know this is silly. That’s supposed to be one of the “good” things about life — You can never go back, only forward. . . . And 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 on egg shells around me or ask how I am. I just want to go away somewhere for awhile, slip quietly away.
So that’s my story. I think I’ve told you everything. Of course there will be more . . . and maybe I’ll post that too. I think I’m going to post this 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 what we can handle . . . What will I be handling?