Why This Hospital Photo Is Bravery At Its Finest

In the summer of this year, I experienced a migraine that lasted two months, vision loss in one eye, and endless vomiting with no answers every time I ended up in the ER. I tried everything to rid my migraine and went so far as to get a painful daith piercing, but nothing helped. In October, I experienced the same symptoms that drew me to the hospital once again, except this time, they found five brain lesions and an inflamed optic nerve that’s caused me to become half-blind. I was diagnosed with a rare disease called NMO that requires infusions every two weeks to prevent another relapse.

It’s taken everything in me to get up in the morning. Work has become an endless struggle. I’m supposed to be the strong one, but right now, I feel like a failure – a disappointment in so many areas of my life.

Then I saw a photo of a little girl in the hospital on Twitter that stunned me. Her name is Akane, and she was diagnosed with NMO in November of 2018. She’s lost vision in one eye and she has to have monthly infusions as her treatment. It broke my heart that such a young girl is going through exactly the same thing I am as an adult and yet – she’s smiling.

She is the epitome of bravery in its finest form.

Akane didn’t ask to be sick. Like so many other children diagnosed with an incurable illness, the time they spend in hospitals should be time spent running outside without a care in the world. They should be role-playing make-believe nurses taking care of sick dolls instead of being a sick patient themselves. Life isn’t fair sometimes, but Akane is showing us that though life throws curveballs, we can still be grateful.

Through Akane’s bravery, we too can smile in our pain. We can be brave like her.

Despite the pain that I know Akane is going through because I’m breathing it right now, her smile is teaching me that I don’t have to focus on my pain because I have it. I can ask for some sonic and a board game on my next hospital visit and be content that I’ll have someone to play with. Whether it’s my husband, friend, or mother-in-law, someone always shows up because no matter what, I’m loved. I’m loved like Akane is loved by her mother, Crystal. We have people with us, holding our hand through scary times, and this is what matters- not doing this alone.

It doesn’t matter how bad the pain we are feeling is, as long as we can still feel the love of those that love us, we will survive that pain, again and again. 

Though life threw me a curveball, I can still be grateful I have my husband who keeps me warm at night, a job that pays the hospital bills, friends that have been there for me, my twin who never fails to make me laugh, and a house to come home to.

As this year ends, despite being sick with a scary, unpredictable diagnosis that has changed a lot in my life, I will be OK because Akane is OK. And if a seven-year-old can be OK in her diagnosis, so can I.

If I know anything about what bravery is, it’s because of Akane.

*Photograph for this article is used with permission from Akane’s parent.

*Donate to help find a cure for NMO at the Sumaira Foundation for NMO here.

If You Think You’re Tired of Listening to People Talk About Their Chronic Pain, Imagine How Tired They Are of Living With It

Chronic pain affects more than 1.5 billion humans worldwide so the chances that you’ve heard someone talk about their pain is pretty likely. However, if this is your first time hearing about chronic pain, you’ll probably understand it more after reading this.

Chronic pain feels like you’re wearing a 100-pound coat filled with random pricks of cacti. Depending on the kind of chronic pain one is dealing with, it’s likely invisible, which means a lot of people can’t comprehend how someone can feel like this all the time.

I was 21 years old when I was diagnosed with systemic lupus. It’s been seven years now and if you know chronic illness — you know how tired we are of living with it.

I remember the day after I was diagnosed, I needed to go to the grocery store for milk. It was a cold morning in Colorado Springs and as if I wasn’t stiff already, I had worn three layers that made my movement robotic. I remember waiting for the area where the milk was to be clear of people in case I did something embarrassing. Well, as my life would have it, I grabbed the milk carton with my wrists and it slipped down and bounced on the floor. What was more embarrassing was trying to pick it up. Good Lord…it felt like bobbing for apples. All of a sudden I wished I hadn’t worn three layers of clothes as it only made me sweat more. A woman my age came around and picked it up for me (after she must have witnessed how ridiculous I looked). I made a weird, awkward laugh and muttered something like, “Sorry, ha-ha, condensation.” She replied with something along the lines of, “We all do it,” and then she was gone.
I starred at the milk carton in my basket and then at the girl as she walked away. I felt like I had egg on my face — so awkward and embarrassed. I stood there staring at my swollen, rosy hands wondering what my life was going to look like if I couldn’t pick up a carton of milk at 21 years old.

As time went on, the inevitable began. Pouring coffee was a struggle, brushing my teeth became a chore and brushing my hair was never going to happen.

My new normal was greeted by chronic pain in the mornings and kissed goodnight by never-ending tears. I knew I needed to accept the pain but I still couldn’t understand why my body was failing me.

My body continued to fail me throughout the years as I got sick with hypothyroidism, gastritis, migraine, and depression. And as much as I love the cold weather of October, this month has been especially piercing (and still painful) after I was diagnosed with Devic’s disease. They discovered I have optic neuritis and five brain lesions. I couldn’t say why pain likes to torture me. Why, if I’m not vomiting every day from gastritis for a week, I’m flaring in my knees or walking around half-blind with head pain for a month with sleep being my only relief. Why every second of every minute of the day I think about what it used to feel like to not feel a damn thing. And I look at the girl at the grocery store that has that extra pep in her step and I can’t help but feel an ache for normalcy.

I wish people would understand that chronic pain is a disease. It’s pain that requires lifelong management and it’s not cured by a magic pill or magical green tea matcha. People who suffer from chronic illness, or any disease for that matter, didn’t do it to themselves by what they ate or didn’t eat. Think about that before you blame a human being going through their own never-ending pain. Pain is pain and human life is human life. You can do all the right things and eat all the right things, but you won’t escape pain. It meets every one of us at some point in our lives.

Maybe if we tried to listen before we judged, we’d have a lot more people feeling less lonely in their pain.

I’d say I’m an extremely empathetic person toward chronic pain because I’ve been through the lonely part. You don’t even have to explain yourself to me — I just get it — and I’m sorry. I know you miss a thousand and one things and I wish I could tell you every broken part of you will be normal again, but I just don’t have the words. So, I’m going to tell you about the morning I drove to work and heard the Japanese legend of Kintsugi on 90.9 KCBI-FM.

According to legend, a Japanese shogun named Ashikaga Yoshimasa sent a cracked tea bowl back to China for repairs. However, upon its return, he was dismayed that it had been put back together with hideous metal staples and thus, Kintsugi was born. The tea bowl was put back together with golden glue and Yoshimasa found that it was even more beautiful after it had been broken and glued back together than it was before.

Kintsugi is related to the Japanese philosophy of Wabi-Sabi, which calls for seeing the beauty in the imperfect and also mushin, the acceptance of change. I know it doesn’t feel like it now, but as your pain breaks you — cracks you in every way — you’re changing into something new. You are your very own Kintsugi masterpiece.

So, to the people who don’t suffer from chronic illness, the next time you have the urge to give your opinion on chronic pain or perhaps roll your eyes at the person who takes a handi-cap spot even though they’re walking with two legs, remember that not all pain looks the same. Remember that they’re a human being suffering from a silent, invisible illness that you’re lucky you don’t have—and I hope you never have.


Remember that though you’re probably tired of hearing about people’s chronic pain, they’re undoubtedly more tired of living with it.

What if you were the golden glue that mended someone’s brokeness from chronic pain? That makes you part of the beautiful; a part of Kintsugi—a part of the change.

Don’t be a staple.