Friday, March 20, 2015

Looking at the World Through Lyme-Colored Glasses: Learning to Live With Chronic Pain

Ask any ten-year-old girl what she’s most afraid of, and she’ll probably tell you ‘bugs’ or ‘the dark.’ If you had asked me when I was ten years old, I would have said spiders.

I would have also been lying.

What I always used to be afraid of was getting sick, somehow having my life ruined by a disease or cancer that kept me from living my life. Losing the ability to run, to have to limp around on crutches or glide along in a wheel chair.

But most ten-year-olds don’t think about dark things like that and of course I wasn’t going to set myself apart by voicing a fear that I thought was morbid and far-fetched. I was a healthy kid. It’s not like I was going to come down with some crippling sickness.

But then I got Lyme disease. I can still walk (thank God!), but I’ve been in pain for every hour of every day for the last three years. I used to work out four to five days a week…now going to the gym is simply not an option. Writing, one of my favorite hobbies, is significantly more difficult and painful now that my hands have been affected by Lyme. Surfing is a once a week activity and hurts much more than I’d like to admit.

When I first started having pain and slowly losing the ability to engage in ordinary daily activities, I was scared. I fought so hard to keep Lyme from changing the way I lived my life, to keep it from affecting my personality and the way I viewed the world.  I should have realized that that was an impossible task.  

My everyday life is what Lyme attacked first. Using can-openers, cutting fabric while sewing, holding a pencil while trying to do math, keeping my hands above my head long enough to wash my hair, all of these tiny jobs suddenly became difficult. Rounds of anger, mild depression, and headaches became the norm.

I tried to keep going, to keep living my life the way I had before Lyme disease. But I soon realized that the life I had once known was completely gone. I was scared, but I worked hard to keep myself together. And then the pain got worse and started spreading all over my body. That’s when I started freaking out.

That’s when I had the thought that maybe God was just a horrible being that didn’t give a damn about me. How could he? If he really loved me, he wouldn’t have allowed my worst fears to be realized.

I think that was the hardest part about it all. It wasn’t the pain, it wasn’t having to stop writing or working out, it wasn’t having my cognitive function start to go downhill.

It was the horrifying idea that maybe the one person I had always thought to look up to no longer loved me, was no longer there to help me make it through the day.

Because what else was I supposed to think?

Confused, angry, in pain, I thought that maybe I didn’t want anything to do with a God who let such things happen.

Deep down I knew that wasn’t an option because I knew there wasn’t anything outside of God that could possibly ease my pain. But I was still angry, grudgingly sending up “prayers” laced with profanities, raging at him, telling him he had to heal me…he made me, I didn’t ask to be born, so he needed to fix things fast. It was his obligation to do so.

But apparently he didn’t see it that way because healing never came. We went back and forth, me cussing him out, him just taking it silently. Through all of my abuse, he never once left my side.

Unfortunately, I didn’t recognize that at the time. In my pain, I had the foolish thought that he had left me all alone. And I couldn’t help hoping that maybe I would be lucky enough to just waste away and die. 

But three years later and I’m still here. I’m still in almost the exact same boat. My body still hurts from the moment I wake up till the moment I fall asleep. Sometimes my mind feels like somebody reached into it and stole away all my happy thoughts. I’m still not able to work out or type without bringing pain upon myself. Only one tiny thing has changed.

I have more peace and contentment now than I’ve ever had. I don’t struggle as much with the way my life has changed. I don’t question God’s intentions…at least not as often as I used to.

How’d that happen? Well, the explanation must start with a quote from The Book Thief by Markus Zusak:

[Rudy] stood a few meters from the steps and spoke with great conviction, great joy.
“Alles ist Sheisse,” he announced.
All is shit.

I know, I know. Maybe that’s not the best quote in the world. Maybe it’s not “Christian,” and maybe my interpretation of it is incorrect. But it’s helped me understand something very important.

This world isn’t right. Sometimes it can be downright hellish. I’ve tried so hard to understand it. To understand the ‘why’ of my pain. I never found an answer, and I think that’s because there isn’t one. Alright, so maybe I can get them on some level. It’s “God’s will,” it’ll “draw me closer to him,” it’s all “part of a bigger picture.” Sure. I know that. I grew up in church, I’ve heard all of those before. But those aren’t answers…at least not the kind that we look for when we’re in chronic pain.

You see, I don’t like waking up in the morning and thinking “Oh crap. Here comes the pain.” I don’t like sitting in the far back corner of my biology lecture room so that I can wiggle around and stretch myself out without distracting the entire classroom. I don’t like making a fool out of myself when I go surfing, wiping out on waves that wouldn’t have been a problem without Lyme. I don’t like feeling the depression crush down on me and feeling as though I’ll never make it out.

I don’t like having Lyme disease.

But nobody ever said that I did have to like it. I do, however, have to learn to live with it, because this is the road I’ve been placed on. I just have to let go of the fact that my life isn’t the way I’d like it to be. I have to realize that God isn’t my enemy.

I have to accept with conviction, even joy, that “Alles ist Sheisse” and move on.

Maybe that sounds cynical, but it’s not. This life has a lot of downs, but it has its ups, too. I have a completely awesome family. I have a good little job, the opportunity to go to college. I can still walk, even if some days I do have to scoot along with a weird swag to cover up my occasional limp. My friends are very supportive of me. This blog is doing well and I have the ability to keep pursuing my dream of publishing. And I have a God who, despite my initial beliefs, is not evil and does not hate me, but rather has an amazing love for me.

None of that makes Lyme disease okay. But it does make it easier to bear.

Thankfully it is possible to make this world a little less horrible by finding ways to live, love, and laugh through the pain. And thankfully this isn’t the only life I’m going to get. I can take the pain, the darkness, the moments of depression. Because I know that there’s something much, much better waiting for me on the other side. I’m learning to hold onto that thought, to remember that God’s going to get me to that place. Yes, it is going to hurt. There will always be days that I want to give up. But I won’t, not until God does. And I’m pretty sure he never will.

So yes, my life has changed a lot with Lyme disease. No more workouts, no more jogs to the beach. I’ve become very cynical, much more edgy, definitely more content (which some would say doesn’t go with cynical and edgy…I’m living proof that it does). My view of God and my relationship with him has shifted quite a bit, and I’m perfectly fine with the idea that this world is composed mainly of “Sheisse.

In short, I now look at the world through Lyme-colored glasses. I used to think that was a bad thing, that I shouldn’t let this disease change me. But, as it turns out, pain will change people whether they like it or not. I’m not trying to fight that fact anymore; I’m just trying to make sure it’s changing me in the right ways.

I’m learning to accept life as it comes, trying not to get angry when it continually turns out “wrong,” and fighting to stand firm in my faith.

Because what else am I going to do? Reject God and just lie down and wait to die? Hell no! I’ve harbored that thought once, and I don’t mean to go back there again if I can help it. I plan to limp through life, continually adjusting my Lyme-tinged glasses so that I can see far enough ahead to get a glimpse of Heaven. Because that’s all I really need to see in order to make it out of this world with my soul still breathing.

Sure, I’m going to have problems. I’m going to get upset with God, depressed by looking back on the life I used to have. But that’s just how this world works. As long as I keep my eyes fixed on what’s ahead and continue to learn how to best get there in one piece, I like to think that I’m winning.

What about you? What has happened (or needs to happen) for you to win the fight against your pain?  


  1. Hannah, you are incredibly brave. And so strong... I don't know how it feels to live with so much pain, all the time, and I have no idea how you do it. You're an inspiration. From now on, whenever I hit a bump in my life, I'll think of you. If you can do what you do, every day, then I can do whatever I have to do. Hugs :)

    1. Your comment made my day. The thought that my little story can inspire even one person makes this world just a bit easier to bear. =)
      I like to let myself think that I am incredibly brave and strong, but it honestly has nothing to do with me, more the people (and the God) surrounding and supporting me....People like you who always encourage me through sweet comments. =) Thank you so much!

  2. Ah geez it ate my thoughtful comment.

    The gist is that this quote by C.S. Lewis was a huge inspiration to me when I was in a really tough rheumatoid arthritis flare: "You do not have a soul. You are a soul. You have a body."

    1. Ah! I hate when that happens. Such beautiful thoughts lost in cyberspace. =)
      That is one of my favorite quotes. C.S. Lewis has helped (and is still helping) me work through Lyme. How cool that it's helped you with your rheumatoid arthritis, too!

  3. Hannah, what a beauty you are... inside and out. I have been praying for you and your family, and will continue to do so. I have no concept of the pain you are in, and I'm so very sorry for it. I hope to see you out in the surf again soon. Seek the Lord and his strength, seek his face forevermore.

    love, Mrs. Garland

    1. Thank you so much Mrs. Garland! Don't be sorry. I know this is preparing me for something good. =) We all appreciate your prayers to no end. Thank you for your sweet comment!

  4. Hannah - you are amazing! And, you are loved by an amazing God. I don't get why He allows all the Sheisse, but it is definitely a part of this world - our broken, messed up, longing for the great physician world. I have only been in daily pain for short periods of time - and not all over my body, so I can't imagine living with it daily all the time. I had an arm surgery that had me in intense pain for six months and daily, continual pain for two years, but now I just make sure that no one touches my scar tissue and I'm okay. I remember the mental stuff I went through when I had that continual pain and it wasn't pretty. I clung to God, even when I was ticked off at Him, and I gave up on a lot of my dreams. I didn't deal with it as graciously and beautifully as you have. You are a fighter and I am impressed. Praying for you.

    1. It's only because I am loved by an amazing God that I have any chance of appearing to be amazing. =) I'm so sorry to hear about your pain. It is very confusing and difficult to deal with. I hope you didn't give up on any of the important dreams. Some of them are worth fighting for...even if it hurts. Thank you so much for your prayers and sweet, supportive comment. It means a lot. I'll be praying for you, too!

  5. (Not sure what happened to my first comment, but here's what I think I wrote)

    Sweet Hannah! I loved this post! You are an incredibly talented writer! I love your raw honesty. I'm so glad you are keeping an eternal perspective through all this. Life can be lame! Some days lamer than others. When my hard days hit and I feel buried by anxiety and depression, I try to remind myself that this life on earth is not all that God has planned for us. In fact, sickness, disease and death were not part of His original design. I, too, am so excited for heaven. Until that day comes, I try to embrace Him and the blessings He has given to me.

    Our family has been and will continue to pray for you and your wonderful family. I cannot image the physical pain that you all endure each day!! But I do know that God is good -- even on the lame days!

    Blessings & joy,
    Mrs. Clover

    1. I'm so glad you enjoyed this post! It was difficult for me to write, but, especially after reading your comment, I'm happy to see that it got my point across. Sure, life can be lame, but God is awesome and we just have to keep looking forward to our real home. =) Thank you so much for your continual prayers and kind words! They mean the world to me and my family.

  6. You've written this 3 years ago. Shame I've only gotten to read this now, but it's incredibly wise, and honestly? What i need right now. Thank you :)


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