My Sudden Sight

eyes2Last night, I watched the movie Cake, which stars Jennifer Aniston as an ill-tempered woman dealing with chronic pain. Seeing her move slowly and robotically, small gasps with every effort, brought back some difficult memories. But also a clear sense of strength and of hope.

As anyone with chronic pain can tell you, it becomes so much more than a physical nuisance. As hours turn into days, days into months, and months – sometimes – into years, even the smallest discomfort becomes a nagging, petulant child. It sears through your every thought and bears down, constantly testing your emotional capacity to function like an average human being.

For me, waking up has been the hardest part of my day for 7 ½ years. Right now, I wake up sluggish, but with minor discomfort. The dryness in my eyes is easily cured with a drop or two of TheraTears and some eye-rolling to work the solution around. It didn’t used to be so easy. Immediately after the hospital, before I started wearing soft lenses to protect my eyes from the rough scars on my eyelids, I would wake up to near unbearable pain. I would spend an hour or two just praying to go back to sleep so I didn’t have to open my eyes.

The room at my grandparents’ was dark, its single window shaded, and I had a bathroom to myself. Most mornings I would get up, use the bathroom, and start getting ready to walk downstairs without opening my eyes. It was still painful, but not as painful as having to open my eyes. Certainly not as painful as blinking or walking into the main part of the house where the harsh sunlight pelted me with rays like acid.

After each surgery, things seemed immediately worse, then better, then worse again. The pain pills masked the abating pain for a week or two, and the high doses of Prednisone kept the inflammation at bay until I had to taper down. I quickly discovered that pain pills work best when you stay on schedule, even setting an alarm to wake you up in the middle of the night. Otherwise, you wake up crying out loud from the pain – in my case, tearless.  There are still some days when I hit a rough morning, take some acetaminophen, and wait another 30 minutes for it to kick in before opening my eyes and starting the day.

Regardless of whether or not I wake in pain, the fear of that pain lingers. After a year or so, thick scar tissue grew across my right cornea, and I eventually convinced my doctors to let me wear the soft lens in my left eye full-time. The pain lessened, and there were even some days that I felt in control of it. But the fear of that pain remained. With each slight discomfort came a wave of adrenaline and the frantic thoughts of how to stop the pain before it started. There was one year where every Wednesday, it seemed, I would come home and have to lie in a dark room for an hour, forcing my eye open with my fingers to put in drops every so often until the pain became bearable. It was like a timed migraine radiating from my left eye socket. They came untimed, too, forcing me to lay my head down on the desk at work in between customer service calls, covering my face with my arms to block the florescent beams.

But that was four years ago. I have come so far since then. If had you told me then that I’d still be fighting to recover, but functioning on a much higher level now, I’d have shed liquidless tears of joy and unrelenting dread.

Pain is more than nerves firing to tell your brain something isn’t okay. Pain is a trigger for reaction – bodily and emotionally. Pain that returns again and again is the harbinger of a fear that sits deep in your thoughts for maybe the rest of your life.

In the face of all that pain and fear, it can be difficult – impossible – to find hope that it will ever end. Four years ago, I did give up hope. I told myself that the pain was my new life, and I would just have to learn to deal with it. Without that hope, the pain overwhelmed me, and I nearly drowned in the worst depressive episode I’ve ever experienced. I wish I could say there was a moment where everything changed and suddenly my passion for life revived! It was, instead, a slow and grueling climb back to some semblance of normal.

There was, however, a moment that gave me the first taste of hope I’d savored in a long time. In May of 2011, I saw a new surgeon in Miami whose procedure (briefly) gave me sight again in my right eye. The surgery didn’t take, and the scar tissue grew back. The pain lingered, and the depression got worse before it got better. And yet, there was this one week were I began to recognize the faces of my loved ones again. It was enough.

I believe, now, that is what I meant when I started this blog and named it “SuddenSight.” It is that moment of hope, that brief flash of light from a tiny hole to world of “normal.” Removing the bandages and correctly counting the nurse’s fingers with my right eye for the first time in three years – that was my sudden sight to hope again.

What’s yours?

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Fighting Fear, Fighting Frustration, Finding the Silver Lining

I finally made it home today, one week after going to the doctor to check on a fever. Funny how a checkup can turn into a brief hospital stay. Not so funny how a few nights in the hospital can bring back so many memories and ignite so much fear and frustration.

Last Sunday, I woke up at 6am with a fever of 102. I texted my mom, and at her behest took some acetaminophen. Luckily, this kept the fever down and manageable for most of the day, but when I awoke the next morning with a fever of 99.5, I knew it was time to get it checked out. If I were someone else–someone without a crazy medical history, someone who didn’t owe my daily comfort to an immunosuppressant–I probably would have ignored the fever and just spent a second day in bed. How bad can a fever be, after all? Apparently, it can be an indicator of something pretty serious.

I drove the hour to my GP (because, let’s face it, once you find a doctor you like it’s really hard to switch to a new one when you relocate). She ordered several tests and cultures, so I decided to stay the evening with my grandparents, who live close by. That evening, I was still feverish, but I enjoyed the comforts of staying with my Nana, including her delicious cornbread. Normally, I try to stay gluten-free, but I have a particular weakness for Southern cornbread, especially when I feel ill. It turned out to be a good thing that I stayed the night. The next morning my doctor wanted to retest my white blood cell count. When it came back just as low as the day before, she requested I admit myself to the hospital.

A Quick Note on WBC Count

Your blood is made up of several different kinds of cells. Your red blood cells carry oxygen and nutrients to your body. Your platelets help patch you up when your body is cut by coagulating in the wound. And your white blood cells (WBCs) help fight off infection. Your WBCs are further broken down into types: some WBCs fight infection while others carry the infected cells to the infection-fighters. The carrier WBCs are called neutrophils, and a low neutrophil count is called neutropoenia., usually an early indicator of leukemia or an anomaly caused by certain medications.

My doctors explained that they normally like to see neutrophil counts above at least 1,500. Mine was under 400. And so I was admitted to the hospital…

After the Hospital – Deja Vu

I was admitted Tuesday and released Saturday. My fever diminished, and my white blood cell count rose enough to pull me out of neutropoenia. I thought that would all make me feel better, but somehow I’ve found myself much more uneasy than expected. Physically, I feel mostly fine. A little more tired than normal, but fine overall. Emotionally, however… I have seen much happier days.

Being in the hospital, even for a short time, reminded me of the vulnerable, fragile feeling of suddenly not having control over my everyday actions. It brought back memories of wanting so desperately to escape, to wake up and have the nightmare be over. The loop of late-night IV drips and the constant stream of different doctors and nurses rushed into my new reality. The world I had built up that felt safe was suddenly infiltrated by the horrors of a past I’d tried so diligently to forget. In a matter of days, my new normal had crashed into my all-too-familiar, vulnerable past.

I thought that fragile feeling would disappear when I left the hospital, but then I stayed the rest of the weekend at my grandparents’ home, the place where I had spent months recovering the last time my life had flipped on its head. I felt fine physically, but I was irritable and pensive. The fear of losing the life I’d built–again–created a hard wall of fear and frustration in front of my face before I could even realize it was happening. Thankfully, my family saw it first. They let my harsh comments go and explained away my frustration with every little thing. It’s amazing how much you can need a hug without realizing it.

When I drove home today, I found myself weeping over the simplest songs. I found frustration and jealousy at a friend’s Facebook event invite because she knew I couldn’t attend. Logically, I knew she was reaching out and being friendly. But emotionally, all I could think was, “Screw you and your simple life. How can you rub it in my face how completely over my life is? How can you treat me as though none of what I’m going through matters?”

It was a ridiculous reaction to a perfectly kind invitation, but I couldn’t push the feelings of anger and frustration away. It wasn’t until later, when I was talking on the phone to my mom, that the real reasons for my frustration poured out of me in a stream of tears and words.

Admitting My Frustration, Facing My Fears

When I was growing up, I was always reminded how lucky I was to have my arthritis in remission. As in, my mother constantly reminded me. At track events or cheerleading competitions, when I took the field with Dance Line or took the stage for Drama Club, my mother would gently remind me of how proud she was of my accomplishments–and how grateful she was that I could enjoy them. Because my juvenile rheumatoid arthritis had gone into remission at age 4, I didn’t quite understand what she meant. It wasn’t until living with RA these past six years that I finally understood that gratefulness.

Knowing what I know now about sitting in doctors offices, scheduling everything around prescriptions and infusions, and spending time in hospitals, I want to tell the people around me to be grateful every day. I want to scream at people to make better life decisions and to take better care of their bodies and their souls. I want to remind myself every day to take better care of myself. At the end of the day, the person I am really frustrated with is myself. And my parents. And God.

If I’m being perfectly honest, I do my best to live my life as carelessly as others my age. The minute I could afford to dye my hair again, I went bright red. The second I wasn’t on a medication that reacted negatively to alcohol, I ordered a gin and tonic. The moment it seemed like I had a new normal that didn’t involve 5 different eyedrops and 3 surgeries a year, I stayed out late and went out on dates. I lived life the way I saw other people my age living. And when I couldn’t hold as much alcohol as I could before getting sick, I blamed my medication. When I couldn’t stay out late because I got tired by midnight, I pretended I was fine. When I realized I really didn’t feel like drinking and staying out late anymore, I took up the role of Designated Driver and acted like I hadn’t changed. But I had.

I’m 25. I have RA. I get tired around 11pm. I don’t like being drunk. I prefer board games to bar-hopping. And I hate that it makes me different from my peers. I hate that my wrists hurt when I don’t eat well. I hate that getting a fever puts me into the hospital for a week. I hate that my schedule revolves first around doctor and infusion appointments before anything else. I hate that I have to make sure everything is a certain level of clean. I hate that I have to do about 5 extra things than most people before I leave the house. I hate that I have so many little things to remember that I can’t seem to remember anything anymore. I hate that I have an infection that caused me to get sick last week, but I won’t know for another week or more what it is. I hate the fear that it’s something even more life-changing that what I already know I have. I hate that none of my close friends seem to understand how vulnerable and frustrated all this makes me feel. I hate that I don’t feel like it’s fair to them to tell them how I feel. I hate… so much!

I’m so jealous of people who can get up in the morning and just walk out the door. I’m jealous of people who don’t take pills every day. I’m jealous of people who haven’t had to visit a doctor in years. I’m jealous of people who don’t live in fear of what else might go wrong. I’m terrified that something else will go wrong. Something else always seems to go wrong. There it is: my frustration, my jealousy, my FEAR. Because what it all comes down to is fear. Fear that I can’t deal with whatever else gets thrown my way. Fear that I won’t have the things I always wanted. Fear that I will be alone in enduring whatever comes next.

The Silver Lining

When I recognize these frustrations and these fears, life is just as quick to show me how incredibly fortunate I am. I live in America. I have easy access to doctors who can help. With medication, I live a relatively normal life compared to most Americans. Compared to most of the world, however, my life is charmed. I am grateful to have medications to remember each morning. I am grateful to get out of bed each day and get ready for a job that I’ve had for more than 3 years. I am grateful that this fall I will have the opportunity to study what I love. I am so grateful for the things that I have, the life that I lead, and most importantly the amazing people who make it all worth it. Like my grandmother told me yesterday, I might never have all the things that I want in life, but I will never be alone. I have my family and friends to thank for that. In a way, I have myself to thank for that. And my parents who helped me to create the person I am and the life that I have. I especially have whatever God there is to thank for that.

I was reminded by a Kutless song today that “You have to face the clouds to find the silver lining.” My family, my friends, and all of you are my silver lining. Hold people close, open up to those around you, and don’t be afraid to talk to a stranger and make a new friend. Life seems so much less frustrating when you’re surrounded by love.

God bless.