Why I won’t accept my illness, but I’ll accept the battle

I was once asked what I’ve learned from living with an incurable disease. I didn’t really have a determinate answer, but I did say having chronic illness has given me a deeper compassion, one I can’t quite explain. Being a young woman in her mid-20s, most people think I’m in perfect health. However, on the outside, I look nothing like what my body has really felt like for the past three years.  

Swelling, joint pain, raw stiffness, throbbing muscles, needle-burning pain and fatigue were just some of the things my body woke to one September morning in Colorado. My body was not my own; everything from my knees, shoulders, hips and hands were all in pain. I limped to my bathroom to brush my teeth, but my hand couldn’t hold the toothbrush.

I did the best I could that morning despite the overwhelming confusion and drove to work with just the palms of my hands to steer the wheel. After eight months of grueling doctor visits and pain that went unclarified, I was finally diagnosed with systemic lupus after my 23rd birthday. I’ve done everything from changing my diet, exercising, taking medicine — but nothing permanently takes away the flares of pain.

The word “accept” by definition means: 

A) To receive willingly.

B) To endure without protest or reaction.

I don’t accept lupus because that would mean enduring this disease without objection, which means no battle. No battle means I’m not fighting.

But I fight for normalcy despite pain. I fight for staying in a job I love despite the physical exertion it requires working with children on the autism spectrum. I fight telling my body every day that she doesn’t have to accept this disease, because isn’t that what we’re supposed to do when any kind of pain tries to become the boss in our own lives?

In the past three years, I’ve had my fair share taking extra pain pills in the mornings, canceling day plans and praying through sleepless nights. I know the forged feeling of putting a smile on your face in front of people when all you want to do is lie in fetal position in your warm sheets at home with heat pads. I know the feeling of adding layers of clothes to your body during the fall and winter because your body starts to flare — but it’s still your favorite time of year.

Maybe pain happens to people for greater purposes than we think. What if pain doesn’t have anything to do with what we put in our bodies, and it has more to do with something that can’t be seen but felt. Perhaps pain gives us a gift of something greater; a phone call to a family member we haven’t spoken to in a year or the courage to start something we’ve always wanted to. Maybe pain doesn’t leave because it’s supposed to keep teaching us something otherwise lost — something deeper, something that helps others and not ourselves. Pain is a bittersweet blessing in disguise in my life, and it constantly reminds me of others who are facing challenges.

I don’t know when this illness will go away or if a cure will ever be found. I don’t know how my pain will look like tomorrow or in the next week or month, but I do know how I can fight it.

I fight it by doing what I love, even if that’s altered in some way. I’ll keep teaching children and spinning them around in my arms on the days my hands and elbows haven’t given up. I’ll endure jogs on cold mornings when my knees aren’t swollen or my chest doesn’t ache. I’ll drive to a friend’s home to have coffee on the nights I’m not physically drained. And I’ll keep cutting my hair because Lord knows I can’t spend an hour every night brushing a horse’s mane. I’ll still lie on the autumn and winter ground, feeling the crunch of leaves beneath my feet or snow soak in my hair. I’ll keep giving and loving.

I’ll keep doing all these things because if I’m breathing, I’m counting my blessings. I hope you do too, dear friend.

**original article published on The Mighty here**

3 times a special needs child did the perfect thing, and they had no idea what I was going through

Throughout the three short years I’ve had of working with elementary special needs children, there have been several encounters that brought me to tears of joy. I feel like sharing three of these precious moments with you to let you know just how comforting a child that’s “different” really can be, even when they don’t know what you’re going through.

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When Jesse hugged me after I was diagnosed with a chronic illness called systemic lupus in April of 2014.

Jesse had a traumatic brain injury. He also had a speech impairment and needed help in many different ways. I loved helping him. The day after I was officially diagnosed, I was sitting at the lunch table with Jesse in the cafeteria and he was playing with orange slices in his mouth. He put one in his mouth, like we all did when we were little to show the other person that our smile was in fact not teeth, but an orange’s skin. I giggled, but the smile didn’t reach my eyes. He looked at me for more than three seconds and said, “Nee hug.” He reached out his arms gesturing me to come to him, but it sounded more like, “Come he, come he.” I scooted towards him and hugged him, feeling like he became the adult and I was all of a sudden a child in desperate need of a hug. I instantly felt like everything was going to be OK. A child’s hug is everything.

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Finding serenity when my father left {and what it prepared me for}

My childhood was filled with affectionate and devoted parents. My mother and stepfather (I never actually call him that) raised me into who I am today. My youth was filled with bicycle rides on warm, sunlit days proceeded by frosty nights playing Monopoly with too many marshmallows in our hot cocoa mugs, but it wasn’t always like this.

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7 healing things I did when my first love ended in heartbreak

At 24, I fell in love for the first time in my life. I gave him everything my heart had ever longed to give to someone in a deep, real, and special way. In regards to love, it was the first time I felt what putting someone’s happiness before your own has meant. I’ve never taken love lightly; I was patiently waiting until I felt my heart was ready to love selflessly. I dated a guy for a couple weeks in college, but it wasn’t until 5 years later that I decided to truly say yes to a genuine, actual relationship. I had no idea my heart could love anybody the way that I loved him; it was intense and real for me. He was my first kiss too. Yes, my first kiss was at age 24. I was waiting to give it to the person I was certain I’d be walking down the aisle to one day. I saw him being that man and I thought he wanted to be that man too. I could easily regret many things from my time with him, but I’m not. I would rather love as strong as I did than to not have loved at all. My heart was just being brave. Before we broke up, I wrestled with hurt, broken feelings for a week trying to bear my reality until I realized—there was a reason my heart wasn’t trying to bear it. The pain was too deep, and somethings just aren’t recoverable. I remember the pivotal moment when I knew I had to let go; I couldn’t grip anything hard enough. The collapse of my heart was immense and it felt like angels would never stop cleaning up the rubble.

Continue reading “7 healing things I did when my first love ended in heartbreak”