author with flowers

Since April is National Donate Life Month, I thought I’d share my pretty remarkable story of how I contracted a horrible eye infection called acanthamoeba keratitis, (I’ll do you a favor and call it AK for short), went blind, nearly lost my eye and then regained sight through an organ donor. The little monsters invaded my eye in 2007, but even today, I’m still dealing with the awful aftermath of AK. In case you aren’t familiar with AK, it is a very serious, rare and incredibly painful parasitic eye infection. In most cases (like mine), it occurs in contact lens wearers, but it can also occur in non-contact lens wearers as well. Acanthamoeba can be found in all types of water, soil and dust. It can even be found in HVAC systems and humidifiers. No one is immune. Your doctor could get it just as easily as your toddler. AK is difficult to diagnose and even more difficult to treat. Fortunately, I am an AK survivor and have a pretty amazing story to go with it.

It all started on Mother’s Day eight years ago. I wasn’t a mother yet. I wasn’t even married. I was 24 years old and working as a coordinator at a university. I had just bought my first home and was living with my fiancé. It was the first time I had lived anywhere besides my parents’ house, and I was enjoying my newfound freedom and independence. All my extra time was spent wedding planning and getting yelled at by Jillian Michaels. On Mother’s Day that year, I was out shopping with my mom and I kept getting the annoying feeling that there was an eyelash in my eye, but when I looked in the mirror, I couldn’t see anything. “Weird,” I thought, but I didn’t think much of it.

Several days passed and the “eyelash” kept getting more annoying. The white part of my eye was beginning to turn red, but I kept living my life and going to work like normal, although I decided to stop wearing my contacts and began wearing my oh-so-sexy glasses again. I had my annual review at work and was promised I’d receive a promotion soon. I was overjoyed! I couldn’t wait to tell my family the great news (I was having dinner with my parents that evening), but on my way to my parents’ house, I could hardly keep my eyes open. The sun was brutally bright and causing my eye to water like I had just finished watching “The Notebook” for the first time. It is a miracle I made it home safely that night. After looking at my eye, my mom convinced me to go to the emergency room. She took me in and we waited for what seemed like an eternity for my name to be called. At least “American Idol” was on in the waiting room to keep us occupied. I finally was seen by a doctor, who I swear was Napoleon Dynamite’s doppelgänger. Although he was amusing, he was no help to me. He referred me to an ophthalmologist (“Dr. S”) who would see me the next day.

After Dr. S closely examined my eye with her phoropter (the fancy shmancy eye machine shaped like E.T.’s head. You know the one.), she said she was pretty certain I had AK. I had no idea what AK was. I couldn’t even pronounce it correctly. Honestly, I was in denial. I thought I just had a really bad scratch in my eye from my contact lens or something. Dr. S told me I may have a serious eye infection and I needed to go to the University of California, San Francisco (UCSF) immediately to have a culture taken by their team of doctors. At that point, I was in disbelief and totally freaking out. I asked her if I was going to lose my eye, and she said she didn’t know. I began crying. My mom began asking Dr. S a ton of questions she simply couldn’t answer without a confirmed diagnosis. I know my mom was scared as hell, but she put on a brave face for me and drove me to San Francisco. One of us had to be strong, and it sure wasn’t going to be me. I was a mess of emotions. The thought of losing my eye and never being able to see my own children is what really got me.

The doctors at UCSF knew I was coming and were prepared to get a culture from my eye right away. They numbed my eye, pried it open with teeth-like jaws and literally scraped (Yes, scraped!) my eye with a sharp tool. They put what they found on a petri dish and told me it would be at least three days before they would know the result. Great. More waiting. All I could do was cry, curse and cup my eye with my hand the whole way home. That one-hour-long drive home felt like four. I was in complete agony. I stayed at my parents’ house that night. (Little did I know, I would be moving back into their house that summer. So much for my newfound independence!) My eye was in so much pain. Any kind of light was blinding to me, so all I could do was lay down in the darkest room in the house and try to get some sleep. I kept praying I didn’t have AK, but it was too late. That night, my mom got the dreaded phone call from Dr. S. The AK in my eye was so incredibly bad, the doctors were already able to identify it in the petri dish. What was supposed to take at least three days took merely hours. Crap.

Thus began my three months of living hell. I was prescribed four different types of drops to use in my eye, two of which were extremely toxic. Dr. S compared it to putting bleach in my eye. Although the drops would help get rid of the awful living parasites, they would ultimately cause me to become legally blind and turn my once beautiful blue eye into a clouded dull blue “wizard’s eye.” Every 15 minutes, around the clock, a drop was going into my eye. I was getting little sleep. My mom had become my sole caretaker again.

That entire summer, I was literally in the dark. While my friends were going to beach parties during the day and clubs during the night, I was stuck in my dark, depressing and lonely cave. The only time I went out that summer was for doctor appointments, which averaged about three per week. I had to wear huge specially ordered dark sunglasses for me to even step outside without my eye watering. Heck, I couldn’t even watch TV without those sunglasses. At my doctor appointments, I’d have more eye exams done and worst of all, more scrapings. I hated those more than anything. (As someone who has given birth completely drug-free, I can honestly say I would rather go through childbirth than to have my eye pried open and scraped again.) Along with the awful regime of drops going into my eye every 15 minutes, Dr. S tried other treatments. An eye drop serum was made from my own blood, which required 16 vials the nurse took from my arm all in one sitting. (My mom said she had never seen my face so white before.) At one point, a membrane was inserted into my eye. That hurt worse than the scraping. I know Dr. S numbed my eye before the procedure, but I swear I could feel everything. Every friggin’ thing.

author with flowers Alas, this story does have a happy ending. In the words of Gloria Gaynor, “It took all the strength I had not to fall apart.” As difficult as it was, I never fell into depression. I remained positive. For myself. For my mom. For my fiancé. For my future children. I survived. In August 2007, Dr. S confirmed the treatment worked and the AK was finally gone. You can imagine the relief I felt! However, like I said before, while the drops I had to put in my eye got rid of AK, it left me blind in my right eye. (Rumpelstiltskin wasn’t kidding when he said, “All magic comes with a price, dearie!”) My vision resembled a frosted shower glass door. I moved back into my house with my fiancé (Yay!) and went back to work. I never did receive that promotion. (Apparently, being on necessary medical leave is frowned upon.) I wasn’t going to put off my wedding any longer, so I went ahead and got married the following August, one year after being AK free. That’s right, people. I was a one-eyed bride! OK, it wasn’t that bad. I actually looked pretty amazing. I did have to spend $300 on a special contact lens that matched the color of my left eye though, but feeling beautiful on my wedding day was definitely worth it.

Four months after I became a Mrs., I finally had a successful cornea transplant. Because my nightmare had a happy ending, I became somewhat of a celebrity in my hometown. In January of 2010, a journalist from the San Jose Mercury News interviewed me and wrote an article about my story. A professional photographer came to my house and took photos of my baby and myself, which were also published in the newspaper. I was even selected to ride in the 2010 Rose Bowl Parade on the Donate Life float, which was a pretty awesome experience and not an opportunity most people get. I thank God every day for my cornea donor. I am proud to say that I am now signed up as an organ donor as well and I encourage you to sign up too.

Fast forward to today, my eye has great vision and is back to its natural beautiful blue. (I’m no longer a wizard, Harry!) To prevent my eye from rejecting the new cornea, I have to use steroid eye drops for the rest of my life, which Dr. S said will eventually result in a cataract, but like I said earlier, “all magic comes with a price.” I still have regular doctor appointments with Dr. S because it is crucial she makes sure my eye is not rejecting the cornea. I am pretty much married to Dr. S at this point. There have been a couple of scares, but so far, so good. She has done an excellent job of keeping my eye on track (or shall I say in tact). Thanks, Doc!

So how has AK affected my life now? Well, I choose to never wear contacts again, and I will never allow my children to wear them either. They can beg me and whine about it all they want. It’s not happening. I will never open my eyes in any kind of water, whether I am in the ocean, a swimming pool or under my shower’s spout. (I don’t mind. I just look like I am really enjoying my shower, which I am. I have two kids under the age of 6. You moms know how it is.) When my kids go swimming, I make sure they have goggles on. I even make them wear goggles when they are playing with water guns and water balloons.

You might think I am paranoid, and do you know what? You are absolutely right, but after living through the hell I went through, you would be to. What I hope you take away from my story is this: Don’t take AK or any other kind of infection lightly. Don’t think it will go away on its own. Don’t wait until it is too late.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


When the local fair comes to town, most people feel excited and can’t wait to bring their children. As a parent of a child with life-threatening food allergies, the feeling I get in the pit of my stomach is most foul.

It is the feeling of guilt, because I can’t let my child participate in the food-filled part of the fair.

It is the feeling of sorrow, that he will miss out on all of the corn-dogs, funnel cake and ice cream I enjoyed as a child.

And it is the feeling of fear, that something there can harm my highly allergic 4-year-old son.

For years these thoughts never crossed my mind. I let my son eat whatever he wanted at the fair. But now everything has changed, as quickly as a spin on the tea cup ride.

Kathy's son and daughter riding tea cups at the fair
Kathy’s son and daughter riding tea cups at the fair.

Now, I must scope out the amusement area for any hidden dangers, such as a roasted nuts booth. I must wipe my son’s hands often with baby wipes. I must have his EpiPen close at hand.

I must be prepared. 

When possible, I try to arrive at the fair as soon as it opens. This cuts down on the amount of allergens that will be all over. It is always less crowded, which is a bonus, and it gives my son more time to enjoy the rides.

We try to get him on most of them, and he even has time to ride his favorites a few times. After the rides are over, we usually play a few games and win lots of cool prizes. We always have fun, after I manage to relax, and treasure the time we spend together and the memories we create.

There is too much possibility of cross-contamination at the fair, so I do not buy any food. I let my son know beforehand that we are going for rides and games, and that we will eat something great afterwards. That way he does not expect to have food there.

It breaks my heart to have to do that. It breaks my heart when he smells the amazing aromas that pervade the fair, knowing that he can’t try any of the delicious treats. But I am a careful food allergy mom, and it would break my heart more if he was harmed by any food there, or experienced symptoms of anaphylaxis.

People who do not have food allergies often cannot imagine all of the preparation and research required, just to go to somewhere like a fair. They may have no idea about some of the simple pleasures kids, or adults with food allergies, miss out on.

I do not want my son to miss his chance to go to the fair. I will learn how to keep him safe there.

I will teach him how to keep himself safe. I will encourage him to be joyful despite his food allergies.

I will teach him to be thankful for what he has, and what he can do.

I will teach him to show love, and embrace the nonsense.

And I will teach him that life is not fair sometimes, but that he has to try to enjoy what’s in front of him, and not be left behind.

Kathy's son on the carousel
Kathy’s son on the carousel.

Follow this journey on Nuts About My Son.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

You look so different now. You have changed so much over the course of a year. You were once full of spirit and energy, optimism and hope. You were limitless.

It’s crazy what a year can do.

You used to dance.

You used to work out.

You used to be fit and in shape.

But all that changed when you got sick.

You now cannot walk up the stairs without feeling faint.

You can’t stand up too quickly.

You sometimes cannot even get out of bed in the morning.

But do not be discouraged over the old you.

You are much wiser now.

You are more compassionate.

You love harder.

You don’t take things for granted.

I know it is hard for you. You see the imperfections that last year bestowed upon you. But, my dear, you are more beautiful than ever. Your heart works better than ever (metaphorically speaking) and you live your life with every ounce you can.

The obstacles you have come across may have caused you to stumble, but you have gotten back up and finished the race.

Please do not cry over what you lost, but rather smile over what you have. You have a loving family, a man who is more than a blessing, caring coworkers and adoring friends.

Your illness has not stopped you from living; it has opened your eyes to a new way of life, a new you.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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We learned early on that the best way to help my daughter Abby, who has cerebrocostomandibular syndrome, with her development is to adopt a “therapy lifestyle.” We don’t “check off” her therapy when it’s done each day. That could limit her therapy to just 10 or 15 minutes a day. Instead, we embed therapy into everyday life. Most of the time, she doesn’t even realize she’s working! And once she does and protests, we change it up.

Mother and daughter holding pink rackets.
Julie and her daughter, Abby.

Here are a few examples of how therapy can be incorporated into day-to-day activities:

1. Have your child push any doorbells and elevator buttons, as well as open any doors. Standing on tiptoes can strengthen and stretch the leg muscles and improve the arches of the feet, while opening doors can help with fine motor and arm strength. We will even intentionally put things on a higher shelf so she has to stand on her tiptoes to reach them.

2. Invest in a small exercise trampoline with a handle. This has seriously been a game-changer in our house! With this kind of trampoline, kids can practice high jumping, jumping on one foot, twisting while jumping, and even using Therabands while jumping! It’s a great little therapy tool that is a lot of fun.

3. At the grocery store, have your child call out the names of the fruits and vegetables he or she sees. Discuss the color, shape and size, and compare the sizes of different types of produce. It’s amazing how many opportunities to practice language skills you can find at the grocery store!

4. The bathtub is a great place to work on fine motor and language. Have your child pour water from one cup to another. We play a game where we see how long we can keep a cup of water going… the less Abby spills while she is pouring, the longer the water will last! Shaving cream, spray foam soap and bathtub paint are all great for practicing writing. With those materials, you can also talk about colors, discuss pictures that your child paints, etc.

5. Work on balance skills by walking on curbs (safely, of course!). It’s also fun to hop from one sidewalk block to the next. As Abby got older, we increased the amount of distance we wanted her to jump until she could jump over a sidewalk rectangle. This works well with tiles while you’re waiting at the doctor’s office, too!

6. Allow yourself permission to avoid the therapy check-off list if or when it’s not working for you. I’m sure you already do so much for your child already — just be intentional in the activities you do and look for ways to build in language, fine and gross motor activities. Therapy can be so much more effective when in the context of everyday activities, rather than as a separate component. Plus, that’s one less thing on your already huge “to do” list!

What are some other ways you have created a “therapy lifestyle” for your child?

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

I have had a lot of family and friends come by, call, email, text, etc. to make sure I am OK. I don’t really know how to answer them. I am alive, and I am doing my best to move forward. But no, I am not OK. I don’t know that I ever will be.

Casey hated when people would cry or get angry near her, so I know she would be furious with me if I spent all day, every day just crying and being angry at the world for taking my baby from me. I also want to make her proud of me. I want to continue the work she inspired within the special needs community. I want to keep her name and her memory alive by helping as many families like ours as I can. So for these reasons, I get up every morning (if I slept that night); I get dressed, and I do my best to move forward.

I have spent the past 10 years with one single motivating factor: Everything I did, I did for her. I know, I know, queue the Bryan Adams song. It’s true though. If I was home, I was managing her airway, protecting her skin, giving medications and food by her feeding tube, changing diapers, and working on her schedule. When I was out, I was usually picking up something she needed or working on setting up something special for her and her friends. There were a few occasions I would do something for myself, but even then, it was still “kind of” for her. I had to keep my own health (physical and mental) in check in order to be able to care for her. Luckily we had an amazing team of nurses to help with all of this as well. Even with the nurses here though, the last six to 12 months often required the nurses and myself to tend to Casey’s needs.

For 10 years all I have known is caring for Casey. Being there, caring for her is all I wanted. I knew from the moment she was born that every moment with her was a gift. She was never expected to go home at all. Making it to almost 10 years is nothing short of a miracle.

I have talked about and am slowly working on setting up a nonprofit in Casey’s name to carry on all of the projects she inspired over the years. A lot of people worry what I will do now. Well, part of what I do now is create a legacy for my baby girl that will make her proud.

Losing a child is not black and white. You don’t grieve for a few days and then snap out of it. There are little sounds I hear, things I see  — sometimes I have no idea what sets off a sadness that overcomes me. My heart is broken, and as I held her during her last hours on Earth, I could feel her spirit lifting away. As she lifted away, she took a very large part of me with her. That part will never be filled. I can function without it, and I can find happiness without it. I can live with a part of my soul missing. It will forever hurt, and I will always hope to see her when I open my eyes, enter a room, or drift off to sleep. I try to focus on our good memories and her sparkle. She really did light up every room she entered.

It’s going to take some time to find “me” again, but I will get there. After doing the same thing every day for 10 years, it’s hard to just change. I still head toward the medicine cabinet at 5 p.m. to draw up her medication. When I wake in the middle of the night, I still listen for the sound of her breathing through the monitors. I still expect to hear a knock at the door when the nurses would typically arrive. All of these things will take time.

I feel kind of like a reflection in a broken mirror. You can kind of tell it’s me, but there are parts missing. As time goes by, some of the pieces will be able to be repaired, but not all of them.

Many people want to know when we are going on a vacation. I understand this question. We haven’t really done anything like that in the past 10 years. However, going on a vacation is not on our list of things to do right away. We are taking baby steps. We are getting out and around town now, and maybe later this summer we will do a day trip or two. We’ll work our way up to a vacation.

The first week after Casey passed, we could not eat or sleep at all. After Casey’s service we were able to bring her ashes home, which has helped me so much. Our house was not right without her here, but after bringing her home I was able to sleep and eat a little more. Some of Casey’s friends who have come by the house go directly to her urn and talk to her. I don’t know how they know to do this, but seeing this fills me with so much love.

We appreciate all of the meals, cards and everyone checking in on us. We think we are doing pretty good on most days, and we just ask that you bear with us. Say her name. Share memories you have of her. Send us pictures you have of her. Let us know if you saw something that made you think of her. We miss her every second of every day. It’s OK to let us be sad. We have to work through it, and some days (or moments) are just going to be hard for us. We don’t have the answers any more than you do. Everyone grieves in their own ways and in their own time.

Luckily, in a way, we had 10 years prepare. And during our last two hours snuggled together as a family, we were able to say everything that needed to be said.

Casey's memorial service: In loving memory of Casey Barnes, April 23 2006-March 10, 2016

Follow this journey on Casey Barnes.

You know the feeling when you went through your first breakup and felt like everything in your life was falling apart? You might have been sad and hurt and couldn’t imagine ever moving past those emotions, but people kept telling you things would get better.

Remember being pregnant and feeling like you were as big as a house and how uncomfortable you were? Unsolicited people everywhere may have come up and said, “You’re going to miss this special time.”

And when your kids were babies and you were up and down all night long and all you wanted was sleep and people told you, “They’re only little once?”

Even if what they said was their way of trying to be helpful, sometimes it just wasn’t. Sometimes you might have wished everyone would leave you alone and let you live in a hole. But, of course, as soon as everyone did leave you alone, you may have started to wonder where they all went and why no one cares.

Having a sick kid to me is like the first breakup, 40 weeks pregnant and the first month home from the hospital every single day.

I want people to read my mind. I want people to know exactly the right thing to say or I want them not to talk at all. I want people to be funny when it doesn’t feel right and to cry with me at weird times. I want to speak the running commentary in my head and for people to understand what’s going on.

To all of my friends and family who I have stared at blankly, not responded to, or seemed agitated with, this is what I’m dealing with.

People love to remind me to be positive and that things will get better. People love to be a cheerleader and believe in miracles. People love getting in my corner.

What people don’t always know is that some days, I need to be down. Some days, I want to feel the sadness, the disappointment, the hurt, or the loss. Some days, I want to do nothing. Some days, I want to eat chocolate peanut butter straight out of the carton (OK, every day I do that).

Recently, my daughter’s surgery was postponed. I’ve been mentally preparing for this surgery for six months. I was prepared for a major surgery with some pretty big risks. About two weeks ago, we changed the scope of the surgery to be less risky and I was so relieved! I could not explain that relief to anyone because I had not fully explained the fear I felt for this surgery. I had a very true and very real fear that I may lose my daughter or lose some part of who she is in that operating room. For months, it’s been weighing on me and in one short phone conversation, that weight was lifted.

Once the scope changed, my mindset changed. I was so ready to get this surgery done and to move on with recovery and the next phase of treatment. Then, last week, she spiked a fever from a quick bug and it affected her white blood count. For her safety, surgery has been postponed.

I don’t have a rescheduled date yet, I can’t start planning for it, and everything I had planned has changed. So now, my mind is racing with all the “what ifs” and scheduling concerns. I’m not happy with the new options on rescheduling because now I’m wide open, but postponing falls into a busy time on my calendar. I had finally gotten to a place where I was at peace with surgery and now everything is changing and the uneasiness is back.

So, of course, the comforting words have come. Let me throw out a few things.

I rationally can understand that surgery when she isn’t well is a bad idea.

I know her health is more important than my calendar.

I believe God has perfect timing and he will be just as present with us on the new date as he would have been on the original date.

Let me also throw out something else.

It still sucks.

Remember that when you are looking at the big picture and trying to provide comforting words, there is still a person living in that situation right then. They can’t always pull back and look at the big picture because they are scraping by in the day to day. Yes, it’s awesome to find the positives in a yuck situation, but sometimes that person needs to feel the yuck before they are ready to zoom out and move past it.

So, let them cry into their pillow over lost love.

Let the mom-to-be gripe about how she’s outgrowing maternity clothes (seriously, it’s a thing).

Let the new mom recount the last time she slept for X number of hours straight.

And for me, please let me whine about my calendar!

family of parents and two young kids sitting at picnic tables under tent
Alana and her family.

Follow this journey on Hope TIL There’s a Cure.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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