I Have A Rare Neurological Disease; Here’s Why I’m At Peace

I’ll be 30 next February. It’ll be a Tuesday and I’ll be working, teaching students with disabilities like any other day. That morning, I’ll walk to my car and turn on the ignition without trembling hands, throbbing nerve pain, or tears dribbling to my mouth. And I’ll probably have a pep in my step—but it wasn’t always this way.

Last year (2019) was the hardest year of my life. It began in March when I was staring out our office window at the birds eating when the room shifted, my eyes became blurry, and I lost my balance and fell. What followed after my fall was a year of endless vomiting, long migraines, blindness, and a rare neurological diagnosis in October called Neuromyelitis Optica (or Devic’s disease). It affects the optic nerves and spinal cord which can lead to blindness and or paralysis. Devic’s has taken half of my eyesight away, and some doctors presume patients will go blind within five years of their diagnosis.

Despite living with an incurable disease, I wanted to share a couple of truths in how peace has finally met me.

I have peace because I’ve realized the bigger picture in suffering.

Although God can heal us, we must never presume that he must. The word shares many cases when God does not directly eliminate misery, but rather engages with it for good. Even Paul pleaded to the Lord three times for the thorn in his flesh to be removed and God responded to Paul’s prayers for healing not by curing him, but rather by working through Paul’s suffering to draw him nearer to his glory.

Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.

2 Corinthians 12:9

I have peace because I didn’t do this to myself and it’s not my fault.

I know of people that live a healthy lifestyle who still end up in the ER or have some kind of illness. I read many blog articles and many swear that by living their certain lifestyle, you’ll never get sick. However, it doesn’t matter if you’re vegan, dairy-free, paleo, gluten-free, pescatarian, soy-free, or have never smoked a day in your life—suffering meets all of us in different ways. If you watch the Netflix documentary HEAL, you’ll see people who did all of the above—but still got cancer.

The thing is, no one can really control when illness strikes. You can do absolutely everything right, and still be the one that gets sick. What matters now is learning how to find peace in something you didn’t ask for.

I have peace because through suffering, I have an opportunity to bring people closer to God.

Remember Jesus’ words when his disciples asked him who had sinned and why the man was born blind. “Neither this man nor his parents sinned,” said Jesus, but this happened so that the works of God might be displayed in him” (John 9:1-3).

What we think is unfortunate in our lives could very well be one of the deepest, most amazing ways God displays His glory. It’s through the trial. It’s through the aching. It’s through the disease.

God oversees all catastrophes and all diseases. Satan is real and has a hand in it, yes, but he is not final and can do nothing but what God permits (Job 1:12-2:10). In my life, I view my illness as a way to bring people closer to Jesus and a means to glorify God.

I would be lying to you if I said that I don’t feel anguish over my diagnosis at times, but knowing my suffering can help others in their journey makes it all worth it.

For this reason, I am at peace.

Anxiety Is Real

The shame long associated with anxiety and panic attacks is felt partly because of the stigma against mental health. We’re attacked for being strong and opening up about it publicly and defiantly. And most people will tell us to get out of our heads—that it’s all mental. While there may be some truth in this, it’s a very difficult thing to control.

In October of last year, I was diagnosed with Devic’s disease (NMO) and it can cause me to become blind or paralyzed at any given moment. It’s a neurological disease that affects my central nervous system, and it’s caused me to become half-blind at 29. I was ordered to start chemotherapy treatment immediately to prevent disability.

Anxiety filled my lungs.

Anxiety attacks are daunting. I’ve experienced a handful since I was diagnosed because I suffer from accepting that this is my reality—that this is even a battle I have to fight so early in life.

One day in January, I was sitting at my computer attempting to feel normal by burying myself in work. When my body and blind eye started to groan in pain, I grew exhausted of the constant struggle. I began to weep which turned into a state of panic. I fell to the floor shaking, somehow able to text my administrator what I was experiencing. By the time I opened my eyes, she was by my side helping me to deep breathe. My husband came to pick me up, and I kept repeating this isn’t normal as tears ran down my face on the way home.

I became bitter.

I became indignant. I lost all sympathy for people complaining about Yoga class being canceled or that their favorite Starbucks drink was no longer served. I wished with envy that their problems were my problems instead of dealing with what I was going through. I was sad and frustrated, and I took a lot of it out on my husband.

It’s taken six months to get back on my feet. I’ve accepted this is my reality; the biweekly infusions, vacation accommodations, and an unpredictable future. I’ve accepted that no one understands what I’m going through unless they’re walking through similar shoes. I’ve let go of bitterness and replaced it with content. I’ve used this time off from work to regain my strength physically, mentally, and spiritually. And come the Fall, I will teach again.

Despite that I am physically better now, I still struggle with anxiety. This disease wrecked every part of my life in a span of three months. I could barely walk without a limp or stand for a long period of time without my legs shaking. I was swollen from head to toe, gained weight, suffered from severe nerve pain, eye pain, and month-long migraines. I fell once. I had to quit my job just three months after my diagnosis in February of this year.

I couldn’t believe that everything I worked so hard for was ripped out of my hands. My career and any chance for normalcy—gone. I was no longer independent. I was incapable of getting out of a bath without my husband’s help. Getting in and out of bed felt like a chore. I was unable to cook, clean, or even shower without pain.

Fear of the unknown prompted a lot of my anxiety. An anxiety attack feels like an elephant is sitting on my chest followed by hyperventilating. Controlling my breathing and thoughts become impossible.

I dread the thought of going blind every day—that at any moment, I could lose the beauty of a sunrise and the wonders of moonlight.

When I became half-blind, half of my world felt suddenly gone. It feels like I have one chance left, that if I have another relapse, everything will change in a matter of seconds, and my world will be dark. Just because someone looks strong on the outside, doesn’t mean they aren’t suffering mentally.

Anxiety happens when we feel like we’ve lost control. It happens when we feel like we don’t have everything figured out. It happens when we get a horrible diagnosis or when we’ve lost a job. It happens when we’re in physical, emotional, or spiritual pain. It happens even with no significant threat. And it can happen to any of us.

Maybe my anxiety happens because I’m trying too hard to play God in my own life.

I don’t have all the answers, and I can’t say I will never experience another anxiety attack in my life given my rare circumstances, but I do know that I believe in God, and he tells me that my heart and mind will make plans, but that his purpose will stand (Proverbs 19:21).

Not everyone’s anxiety is the same. Everyone’s suffering is different, but it’s still important and it matters. I wish I could tell you if you’re someone who got a medical diagnosis that it doesn’t have power, but that would be a lie. It does have power—it changes our lives forever.

Sometimes, we get so far in our thoughts that for a moment we forget we’re actually surviving the anxiety attack. We forget that despite that we can feel our heart beating in our throat, our hearts are still beating, and our body is pushing through the attack for the promise that there is a better tomorrow.

And that deep down, despite our best efforts at self-care, deep breathing, and sound baths, the strong spirit in us that comes from above will overpower the weak.

We will overcome it.