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.

Why Chronic-Illness Feels Lonely Despite That You’re Not The Only One Battling It

According to the National Health Council, there are over 150 million Americans living with chronic diseases with around 80 million having multiple conditions.

But despite the fact that there are many people living with a chronic illness, it feels very lonely.

I’ve suffered from chronic-pain since 2013 when I was diagnosed with lupus. And in 2019, I was diagnosed with Neuromyelitis Optica (NMO), a rare disease that affects my central nervous system. They used to call it the sister to MS, but it’s entirely its own entity now. I know chronic-pain well, and I don’t wish it on my worst enemy.

Before I started bi-weekly treatment for my rare disease, I often felt elderly but without the benefit of looking back on my younger years with pride. Instead, I would watch with envy the girl running on the sidewalk with all her strength and might. I would watch the young make memories they’d never forget, praying that I would get my chance again.

Chronic-illness is lonely.

It’s not that we don’t realize how many people are also suffering from an illness, it’s that in the perimeters of our daily lives, our friends and family, or our work places—we don’t seem to come across someone that relates with us—and so, the people closest to us don’t understand what we’re going through, making us feel even lonelier.

We can try to explain the emotional and physical pain of a horrible diagnosis that changes our lives forever, but we usually say we’re fine time and time again, because no one will truly understand.

Chronic-illness feels like you’re swimming upstream the moment you wake up. It feels like you’re sinking down in an ocean of suffering during the day only to swim upstream all over again come the morning. But to tell that to someone that doesn’t fight a disease daily also feels like an uphill battle. It becomes a matter if people believe our pain even when they can’t see it—while we are desperately and hesitantly walking on eggshells within our own body just to push to another day. And some people don’t care.

So we find comfort in our online communities with people that get it—with people that are fighting the exact same battle we are. Whether we’re fighting a rare disease or a common disease—we find support from people we’ve never met and they feel like family.

What I’ve learned in battling chronic-illness for eight years now is that some people are scared of understanding things they’re afraid of.

They’re scared to fully comprehend the pain you’re going through because deep down, knowing and understanding every inch of your pain and the fact that you’re suffering as much as you are is hard for them—because they love you. Though they will never understand your physical pain, it also takes a mental toll on their heart.

I remember when my spouse first heard of my diagnosis. It was a hard day for both of us. It was hard for me to see tears in his eyes when he was reading about my disease.

So, a lot of the time we hide our pain because we don’t want our loved ones to worry. But if they care and want to be there for us, we must open ourselves to the idea that maybe we don’t have to feel so alone after all.

My disease had full intention of seeing that I would lose all hope in my despair and never be able to jog with my full strength again, or get out of a hot bath on my own, or get out of bed without burning feet, or never see a day where I wasn’t throwing up in pain. But I have seen all of those things through today, and jogging with all of my might again is a feeling inexpressible.

Sometimes tough situations build strong people.

I’ve learned that it doesn’t matter how bad the pain we are feeling is, either physical or mental, as long as we can still feel the love of those that love us, we will survive that pain, over and over again.

Chronic-illness is lonely, yes. You will fight for your health every day. People will call you lazy or dramatic. People will give their homeopathic advice, but an arnica mountain daisy isn’t going to cure your crippling disease. People will make you feel the most lonely you’ve ever felt in your life. But here you are—living despite the battle of not only your disease but of people that don’t understand what you’re going through.

Your pain is real. Your loneliness is real. But you will make it through this, and you will be stronger. I am here for you, and so are the millions of others who get exactly what you’re going through.

You’re not alone.