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.

Chronic-Pain: I’m Done Apologizing For Not Showing Up

I have a rare, chronic neurological disease that affects my central nervous system. It’s caused me to become temporarily half-blind and feel throbbing pain everywhere.

I was diagnosed with Devic’s disease (the sister of MS) last month after my MRI scans showed optic neuritis and brain lesions — and it’s completely shattered me.

Seven years ago, I experienced the same heartbreak in a cold office when the doctor told me I had systemic lupus. No matter how long you’ve lived with chronic pain, you’re never quite prepared for the next invasion of torment. The pain from Devic’s disease fused with the suffering of lupus are unbearable at times. I feel ambushed. Walking is a joke as my knees have turned to brick. The pain is unreal. All I want to do is curl up in a blanket, take pain medicine, and sleep all the time (if I could sleep). At least when I’m sleeping, I’m not crying from the unbearable waves of pain or feeling the sting of missing the things I could once do normally.

Living with chronic disease wrecks you emotionally and it devastates all parts of your life. I’m a teacher, and I’ve missed sixteen days of work and it’s barely November. I have to apply for disability in my twenties and stay on a life-long treatment of IV infusions every two weeks.

I live in a world of uncharted, scary possibilities; the only known thing being the familiar pain I know I’ll face the moment my eyes awake in the morning.

And I’m done . . . I’m done apologizing for not showing up when I’m in the pit of hell swelling with tears every hour. I’m done pushing through physical suffering. I’m done pretending I’m OK; being able to walk without showing my pain is a skill I shouldn’t have mastered. I’m done pretending that I’m not absolutely wrecked by this physical, mental, and emotional assault on my body.

I’ve no reason to miss work. I love what I do and I’ve worked damned hard to be a teacher. Forget sick days, I’m just losing income now. But I can’t worry about things like that. I have to have an unrelenting faith that things are going to work out. That the things that I desire to do now may not happen today, but they will. That I will be back on my feet, warm mug in hand, ready to face anything in my day — pain-free.

I saw this on Twitter once:

Chronic illness: no one gets it, until they get it.

Pretty accurate I’d say. I can’t worry myself with what people think of me. They’ve no idea the pain is still there even when I’m smiling. That the pain is still within, even when I’m not talking about it.

I don’t want my struggle to make me a victim. I want my battle to give others the courage to keep going even if that means — not going. Not showing up. Not saying yes to every — single — thing. Staying in. Crying if you need to. Putting comfy clothes on and eating more chocolate than usual. Putting you first.

People need to understand that saying no takes just as much courage as saying yes. It hurts us to say no — to not show up because we’re struck with an incurable illness that we can’t control. It hurts us to not show up to the birthday party you had planned or the coffee date to catch up on life. We wish we could have control over when our pain strikes us, but we never will. It knocks, comes in uninvited, and changes everything we thought we’d be doing. Sometimes it’s manageable, most times it’s not. In a flare, it’s usually a high pain day, week, or month — and we’re probably staying in our PJ’s.

The thing with a chronic illness is that it’s not going anywhere. It’s made it’s incurable home and we have to arrange our furniture — some things are thrown out, some things collect dust, some things get broken.

Chronic pain isn’t a cry for attention. It’s not something we ask for or choose. Chronic illness is something that happens. It’s a disability. It’s real. The unknown is scary and most days, we don’t know how we’re going to manage the pain, we’ve just learned to. But we can’t always be strong.

And for pete’s sake, we don’t always have to be grateful it’s not worse.

So, I’m done apologizing for not showing up when I simply cannot. I’m done being ungentle to myself and forcing my body to push through the pain when every second it’s begging me to just stop. I need to heal the way that is right for me. It’s the only way I’ll get better — and I’m done apologizing for it.

Also published on: The Mighty