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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A Good Day

teachingpicSo often when you have a chronic disorder, especially a painful or debilitating one, it can be difficult to talk about the good days. That seems counterintuitive, right? Shouldn’t we want to talk about the good days more than the bad?

Of course we do! Thinking of the good days is what gets us through the bad ones. And yet, so many times when I’m writing on this blog, posting on Facebook, sharing on Twitter – I find myself posting far more frequently when I’m frustrated or hurting. Certainly those are times when I need support – of course! And I have to admit that posting when I need support has made a tremendous difference in my recovery time and overall attitude. Yet I also find that posting when I’m happy – on the good days – is just as important!

So here today, just for all of you, I am posting my sheer happiness in waking up this morning on a gray winter day in Atlanta, when the silver lining seemed so shiny and bright…

Mornings

Mornings have never been particularly easy for me. As a kid, I had insomnia, and waking up during high school often meant three different alarm clocks that invariably were destroyed or slept through. But for the past nearly seven years, mornings have been near impossible.

If you haven’t yet read about Christine Miserandino’s Spoon Theory, it’s the idea that everyone wakes up each day with a certain number of spoons with which to allot varying daily tasks. Take a shower? Spoon. Go to work? Three spoons. And so forth. But we don’t all get the same number of spoons. And for some of us, a shower can cost a helluva lot more than a single spoon.

Mornings for the past seven years – since my SJS episode – have been like waking up with more than a few of those spoons shoved into my eyes. I’ve undergone around 15-16 eye surgeries, some here in Atlanta and others with a fantastic SJS specialist in Miami, Dr. Tseng.

It was my first surgery with Dr. Tseng in 2011 that prompted me to start this blog. He was giving me sight back in my right eye. While compications with my rheumatoid arthritis (RA) did not allow that sight to last, his surgeries did give me something else. Through resurfacing the eyelid, he removed the constant pain from my right eye. And last week, he did the same with my left.

Surgeries are never fun. I currently have a “contour bandage lens” in my left eye to keep the stitches from scratching my cornea, and I’m on several different medications for after-surgery pain and inflammation. But when I woke up this morning, something miraculous happened…

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Words really cannot describe how incredible it was this morning to open my eyes and simply see. No pain, no fear, no fatigue from the fear of pain. Just sunlight creeping into my room, wishing me a happy morning…

And a very good morning to all of you, dear readers! Keep your warm memories snuggled near to you this winter, and the happy sunshine under your wings!

Once More Into the Breach

eyesI’m sitting in a hotel room in Miami, mere hours from the next chapter in what has become a seven-year climb. I suppose I could think of my steady stream of surgeries as a mighty war against the scar tissue that continues to threaten my vision. Tomorrow’s surgery is but one battle of many in a long siege that the guerrillas seem to keep winning. Each time the surgeons believe we’ve beaten back the insurgents, and each time the inflamed warrior rises again to conquer!

I could see this as a mighty war, but no. Instead, I choose to see these trips as tricky crags on the mountain of my life. A mountain I have no intention of quitting, no matter how Sisyphean the task may seem. And Sisyphean the task may yet be…

In May 2014, my Atlanta doctor performed a surgery on my left eye (the one with full sight) to cut back the scar tissue which connected the eye to the eyelid. He stitched a donor cornea over the surgical site, hoping it would act as a barrier to keep the scar tissue from returning to envelop eye and eyelid again. By July, however, the attempt proved to have been in vain.

The tissue has returned in full force by now, and I am seeing Dr. Scheffer Tseng in Miami to try something old, but somewhat new. This time, it is a surgery of my own suggestion – one that I am proud to say Dr. Tseng agreed would do well to calm the tissue. He technically did a similar surgery for me in 2012. Despite medication and attempts to bring back sight in my right eye, the pain of it all was excruciating. Constantly inflamed, the scarring on my eyelids from 2008’s bout of Stevens-Johnson scratched mercilessly against my eye. It was far worse for the right one than the left.

Tseng believed the scratching may well be what caused the inflammation to ruin his remarkable surgery that renewed sight in my right eye for a few months. It had gone well at first! But as has been the case with the left eye, the scar tissue pressed forth – and in the right eye conquered all. So he used cheek tissue from my mouth to resurface the inner eyelid of my right eye, stopping the friction and easing the pain. And ever since my right eye has been blind, but calm.

Tomorrow, he will repeat the surgery on my left eyelid. It is my belief that the scar tissue continues to grow in an effort to protect my eyes from the constant scratching of the scarred eyelid. I hope that removing this friction will mean that the scar tissue no longer has a need to grow. Essentially, I’m negotiating with the terrorists of my body – not unlike the Remicade infusions which calm my RA.

And so, my friends, I go again. Once more into the breach. Once more up the rocky surface, with my fingers strong and my feet steady, hoping to make it past this next incline. Let’s hope for the best!

Try, Try Again

Do you ever wake up and just think, “Not today”?

For those of us with chronic illnesses (or even difficult habits), finding a way out can seem like an impossible task. After years of trying, the trying itself can become a monstrous chore. I know I have certainly had moments where giving up looked like the best viable option. Except, I would remember, giving up means getting worse.

There’s an anxiety that undergirds every new treatment. What if it doesn’t work? How much money am I wasting? How much time am I wasting? How much time do I have left, anyway?

Today I’m going into the eye doctor to be fitted for scleral lenses. Essentially, they’re large, hard lenses with a reservoir over the cornea to keep fluid on the eye. The hope is that this will ease inflammation and keep my eyes from growing scar tissue in an effort to protect the cornea. Sounds fantastic! Frankly, I’ve been hoping to get these for a few years now, but the expense wasn’t an option until just now.

Yet there’s still that voice in the back of my head – the one that reaches down and twists my stomach into knots. What if it doesn’t work? the voice asks. What if this was all for nothing, and you go blind anyway?

It’s a ridiculous notion, really. I’m in no danger of going blind anytime soon. We have several other options before that even becomes a worry. And yet, it remains my worry.

When my anxiety is high like this, I often turn to friends to vent. A simple text message at midnight to my sister will calm me, even if she doesn’t have the chance to respond until morning. For me, it’s about getting the words out of my head and sharing them with someone who cares. Other times, I might find it helpful to talk to a friend who makes me laugh or to watch something funny. I’m proud to say I own every episode of Monty Python’s Flying Circus, and it never fails to take the edge off.

My last resource, as a left-brained “Virgo”, is to plan. I plan what I would do if I did lose my sight or my ability to move freely again. I am instantly grateful for my vivid imagination and my dreams, for regardless of my physical condition, those have remained untouched. I have always loved writing and storytelling, and that has been my solace.

When I was first rebuilding my life in 2008-09, I happened upon a film that changed my life. The Diving Bell and the Butterfly is based on the memoir of a man who has a stroke and loses everything but his ability to blink his left eye. Through months of calculated blinks, he shared a story that gave me strength in that first year.

I actually haven’t thought about his story for a long time until now. Perhaps, if the appointment this afternoon does not go well, I will come home and read his book again. I can find hope in the powerful story and gratitude for my ability to read. Then tomorrow, I can research something new to try.

Living Up to You

On the first calm day I’ve had in weeks, I took some time this afternoon to wander the internet. I happened upon this beautiful story of a young man who left behind music, memories, love, and laughter for his family and friends when he passed away yesterday. Please take the time to watch his story and really think about the beauty of life and all its joys.

“You don’t have to find out you’re dying to start living.” – Zach Sobiech

Life doesn’t always give you what you expect. In fact, it rarely does. As a survivor of a pretty incredible (and awful) experience like Stevens-Johnson Syndrome, I am often told how amazing my positivity and strength is through everything, in spite of everything. Yet we keep seeing stories like Zach’s that show a buoyancy of spirit in the darkest moments. Really, there are a few ways to think about this positivity.

1. Maybe getting close to death makes us happier people. We see this in the movies all the time. Someone finds out he doesn’t have long to live, so he changes his perspective. He lets himself begin to love life and the people around him. He rejoices in the moments he has left. I think part of this is true because we fear less when we know our time is limited. We take risks. We tell secrets. So many people who have experienced being close to death will tell you that there is this sudden realization that the nit-picking things in life don’t matter. The relationships in life, the laughter and the shared tears are what truly matter. These are the legacies we leave behind. These are the pieces of our lives that we take with us.

2. Maybe the best people in our lives are destined to leave us early. Last year an acquaintance of mine was shot and killed when he approached another car at a drive-in to ask for a jump-start. I only saw him a few times a year, but the loss was significant. He was young, planning to start med school last fall. He was one of those people who always had a smile on his face, and that smile had this contagious spark that rippled through the people around him. Everyone who knew Mitt could hardly believe that such a wonderful, caring, positive person had been taken from this world so abruptly. Like Zach’s story above, and my friend Mitt’s story, it seems sometimes that the most special people in our lives are taken far too early.

3. Maybe a positive attitude in death comes from a positive attitude in life. This, more than anything, I believe rings true. When my Great-aunt Ann passed away earlier this year, the wake she left behind was one of love and of hope. Throughout her life, she was always a bright beacon of light for those around her, a spirited firecracker that sparked happiness in everyone who knew her. When her health started ailing, she was sure to keep smiling, sure to keep brightening the world around her. We will miss her terribly, but in the days following her passing, the stories told were of joy and of hope. Her love for her family and for life are the legacies she has left for us all.

I think this is why we hear stories like Zach’s. This is why I make jokes about my eyesight (or lack thereof). This is why we’ll remember Ann and Mitt for their smiles and the joy they brought to the world. A positive life makes for a much more positive passing. Even more important, a positive life seeps into those around us and breathes positivity into their lives. Simply put, positive life creates positive living.

Toward the end of the video, Zach tells us that “Life is really just beautiful moments, one right after the other.” An amazing truth spoken by an amazing individual.

Day 3 – Health Activist Writers Month Challenge

Stevens-Johnson Syndrome: the Beginning

Day 3 (April 3) – Wordless Wednesday
 Post a picture that symbolizes your condition and your experiences.

Stevens-Johnson Syndrome: the Beginning

A reaction to anti-rheumatic medication Arava led to a rather intense form of Stevens-Johnson Syndrome. This photo was taken just a few days into the reaction, in 2008. I chose this photo because it’s about a 5 on my photo scale from 1 to brutally grotesque.

Day 2 – Health Activist Writers Month Challenge

Day 2 (April 2) – Introductions
 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
 Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help
the newly diagnosed.

 

5 Things You Need to Understand About RA

 

1) It’s not just for old people.

After “coming out” about having RA, there have been a rather significant number of young adults in my life who have come out about their own autoimmune disorders. Just a few months ago in the grocery store I heard two women strike up a conversation over organic eggs. As it turned out, they’d both been recently diagnosed with an autoimmune disorder and were changing their diets to help counteract the effects. And when I go in for my Remicade infusions every two months, I see people of all ages in those Laz-E-Boys!

2) It is just for old people.

While autoimmune patients seem to be getting younger and younger (I was diagnosed at age 2), the effects of RA in particular can age you very quickly. I make jokes about being a young person in an old body because RA can make you feel like you’re 80! Rheumatoid arthritis hurts. Your joints can swell up and burn and feel like they’ll never work again. On your bad days, getting out of bed can seem an impossible task–no matter how badly you need to use the bathroom. Lifting a glass of water might even seem a feat for only Superman! This is when you realize how important it is to have young whippersnappers around who love you. 😉

3) It may wizen you, but it also wisens you.

I also joke sometimes that I am an old woman living in a young body. My feet might not have traversed this world for very long, but the experiences I’ve had are significant. I understand better than most how to treasure a walk in the park, how to love my body for exactly what it is, and how to relish in each moment of another day lived to its fullest. Bad days can be frustrating, but good days are so much sweeter in comparison. Because I’ve lived beyond “old age,” I appreciate being young more. And I respect my elders much more.

4) Doctors don’t always know best.

In today’s society, we seem to view doctors as demi-gods. Their opinions are like laws. I, too, used to see them that way. And then a young doctor’s attempt to aggressively treat my RA nearly cost me my life and my sight. When my eyesight began to fail, the wonderful corneal specialist I was seeing actually referred me to a better doctor! This happened not once, but twice. I now see the world’s foremost eye surgeon for patients recovering from Stevens-Johnson Syndrome. Yet even then, he couldn’t figure how to keep my RA from interfering with his surgeries. So when my second rheumatologist wasn’t offering the help I needed (and not seeming to care whether I came in at all), I did some research and found a new one. My current rheumatologist has brought me back to normal! The lesson being: if you aren’t happy or aren’t seeing results, get a 2nd opinion. Get a 3rd, 4th, or 5th! Find someone who has read that obscure article relating perfectly to your case so he, too, can bring you back to normal.

And never, EVER, be afraid to ask questions. While doctors might not be able to prescribe certain things, their knowledge of other patients’ experiences can also prove helpful. For example, when the Remicade didn’t seem to be working all the time, I asked my doctor about dietary changes that could help. Going gluten-free after hearing her stories has been one of the best decisions I’ve ever made.

5) You make your own “normal.”

During my flare-up of RA five years ago, I wondered how long it would be until I was “normal” again. I wanted any quick fix that would erase the pain, the weakness, and the frustration of it all. Instead, I got Stevens-Johnson Syndrome, which took me out of the “normal” world for a year, made life painful and difficult (and EXPENSIVE) for going on five years now, and permanently disfigured my eyes. Through it all, I held onto this subconscious hope that one day it would all be fixed. One day I would wake up, look in the mirror, and be “normal” again. I would have my skin back, my eyes back, my youth back. Then one day I realized that the old me was never going to return. My eyes will always look funny. I will always be on some kind of medication or special diet. I will always have to see doctors of one kind or another. And I will always have the immense strength and wisdom that have brought me to today.

So I will always be different. I will always look different. But I no longer wake up in pain. I can exercise without worrying that I will throw out my knees or cause another flare-up (at least, for now). So instead of being “fixed,” I woke up one morning and embraced this new me, this new “normal.” I highly recommend it for you, too. We might not feel normal, but this is who we are. And we can be this kind of normal together.

 

Check out these links to some past posts that really helped me through the worst days:

Let Them Eat Cake

Connections

Beauty is in the Eye of the Beholder

Finding Normal

Fearing Hope, Needing Hope