Friday, October 9, 2015

Looking at the World Through Lyme-Colored Glasses: What Normal Feels Like

3 and a half years. That’s how long I’ve been dealing with full-blown Lyme disease. That’s 3 and a half years of pain, depression, anxiety, anger, and faith struggles. 3 and a half years of my life that had unfolded exactly opposite of how I wanted them to.

Can we just take a moment to appreciate the fact that I haven't killed anyone yet? That's skill right there. Though I don't think that's something I can put on my resume....

Needless to say, while I have yet to allow Lyme to turn me into a psychopath, it's been pretty rough. Especially last summer. I came pretty close to losing my remaining marbles.

For those of you who don’t know, this summer some doctors discovered a fairly large tumor in my neck. So, instead of going to Boston with my grandma, I stayed home and had a four-hour long surgery. Recovery was not fun, and that’s putting it mildly. I have a scar stretching from my ear to my chin, and, almost three months later, it still hurts.

After my surgery, I went to Kansas for Lyme treatment. My parents (who both have Lyme as well) and I have tried many different doctors and remedies, but this trip was different. We traveled out of state and stayed in a hotel for two weeks, spending almost seven hours a day at the Lyme clinic for five days of each week.

That was 7 weeks ago. I’ve experienced no symptom relief and, in fact, one of my symptoms seems to be gradually getting worse. Yay. 

For almost a month after my return from Kansas, I had a single phrase running through my brain:

This isn’t fair.
I tried sucking it up. I tried laughing at myself when I realized that I still kind of believe in a world where young women don't get tumors and aren't asked to endure large amounts of pain.

But, after Kansas, I just couldn’t handle it anymore. It wasn’t fair. The amount of anger was immeasurable.

My prayers turned into sessions of cussing God out – a style I’m pretty sure they don’t teach you in church – and slowly faded out into complete silence. I had nothing more to say to him. How hard could it really be to answer my prayers? Was he too busy for one of his creations? Or did he simply not like me anymore? In which case, what had I ever done to make him mad? I didn’t know, and I didn’t really care anymore. All I wanted was a bit of relief. A bit of normal. 

Unfortunately, when I thought of normal, I thought of the Hannah from 5 years ago. The one who didn't have any pain or anxiety attacks or fatigue. The one who didn't have to think about whether or not she could handle a 20 minute surf session, pump out a hand-written essay, or go to the gym. The Hannah who didn't have Lyme. 

I was sitting on my bed one day, looking at my collection of The Little House on the Prairie books from my childhood and thinking, "God, I wish I could go back there. It was so much easier then." 

Being Hannah, I suddenly had a movie quote pop into my head, a fairly common occurrence for me: 
That's when I finally started putting it together. There is no going back. I realized that I was spending so much time dwelling on the unfair and what used to be that I’d stopped seeing all of the things that exist right now. 

My old life is long gone. The pain-free Hannah, that was then. She existed in Yesterday, but she doesn’t exist in Today. Nothing I do can bring her back and idiotically yearning after her only distracts from the Hannah I am right now. 

I suddenly realized that yes, Lyme is ugly and painful, and maybe it’s not normal for other people. But it’s normal for me. It is me. And while it's not the life I expected or wanted or asked for, it's the life I got. 

As my great-grandfather would say: It is what it is and it isn’t good. But it’s mine. It’s what I’ve been given to work with. 

I’ve had a couple of people ask me, “If you could go back in time and somehow manage to avoid getting Lyme disease, would you do it?” And I always answer with an adamant NO.

Not because I like Lyme or believe that it’s a good thing, but because I know it’s a part of my life. Just like I wouldn’t go back and un-take that horrible speech and debate class I had to take in high school or go back and decide not to read the dozens of horrible novels I've wasted my time on over the years. Because those things make up my life. They’re what make me Hannah. They are my normal, just as Lyme is my normal. 

I’ve spent so much time being angry about Lyme and chasing after different treatments in an attempt to restore normal that I forgot that normal is not a fixed point. I forgot that it changes and morphs over the years.

I don’t remember what it feels like to be pain-free. I’ve forgotten what it’s like to not have to rely on certain songs or books or morning rituals to keep me from feeling depressed. I’m not sure if I’ve always worried about running out of the energy needed to finish the day’s tasks. I can’t recall whether or not I used to possess such a large amount of cynicism.

Up until a few weeks ago, I couldn’t remember what normal felt like.

And now I know. It feels like this. It feels like Lyme disease and anger and love and good and bad all wrapped up in a messy little package called Hannah.

Maybe it’s not normal by my previous standards. And it’s definitely not what I expected out of life or considered to be fair.

But it doesn't make any difference, because none of that changes the fact that my Now is Lyme. That doesn’t mean I can’t remember my Then with fondness. And it doesn’t mean that I can’t hope that my Later will be different. But, for the present, it means that I need to stop getting distracted with my idea of how my life is supposed to go. Getting angry at my life or at God doesn't help. I am not fully capable of understanding them, and I most certainly do not have control over either of them. All I can control is my attitude. And my attitude does not benefit from grasping after things that are no longer mine. 
Maybe life isn't fair. But my happiness and my will to keep going do not depend on what's fair. They depend on my faith, on my strength drawn from God and family and friends. 

So, instead of sitting around for my Prince Normal or Fair in Shining Armor to come riding up and make my life okay again, I can get out there and do it myself. Instead of thinking that getting rid of Lyme is the only way to turn my world around, I can decide that turning my world around is possible even if I'm not cured. 

In short, this mess of a girl called Hannah doesn't need to be the one who felt normal by getting rid of Lyme. She can be the one who felt normal in spite of it. 

So I'd like to tell you something: 

My name is Hannah Heath. I have Lyme disease. I have faith in God. I have pain and peace. Anger and love. Fear and joy. It's ugly and it's beautiful and it's what my normal feels like.

What does your normal feel like? What part of your life are you trying to hold onto? Do you think it would be better to wait for that part to be restored, or better to move on and create a new normal? I'd love to hear your story! 

Related articles:
Looking at the World Through Lyme-Colored Glasses: Learning to Live With Chronic Pain
Lessons From Unbroken by Laura Hillenbrand: The Importance of Never Giving Up - Inspirational
Tumor Troubles Part 2: School, Surgery, and the Road to Recovery - A Guest Post by Caroline Reinhart

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  1. This is a fabulous entry, Hannah. All of these feelings are so familiar, I teared up a little as I was reading.

    I remember having a similar revelation about two years into my Rheumatoid Arthritis. I was driving somewhere and kept having this thought, over and over: Do I want to be healthy, or do I want to glorify God?

    For some people, it doesn't have to be one or the other. But there was a lot more broken about me than my joints. I still remember the release when I finally said, "I'd rather be used to glorify God than be healed." Not that I don't want to be healed. Not that that wouldn't be awesome. But that I do not define His goodness or my happiness by the state my body is in.

    It comes and goes in waves, the acceptance and the anger, but I still draw so much comfort from that memory. I hope you find similar strength from your declaration of normal.

    1. "I do not define His goodness or my happiness by the state my body is in."
      YES. This is exactly the point. Like you said, full understanding and acceptance of this comes and goes. But it's important to have something to look back on and use as an anchor. You with your driving and me with my Edna Mode moment....Yours sounds more sophisticated. =D
      Thanks for the great comment, Alyssa. Keep being awesome!

  2. Thank you for sharing, Hannah. Your writing is so real and refreshing. My normal is crazy and chaotic for reasons you can guess. On the other hand, it's amazing and so blessed. :)
    Traci B

    1. Crazy/chaotic and amazing/blessed. Why do they always seem to come hand in hand? Thanks for the encouragement, Traci! *gives virtual hug* You're the best!

  3. He will cover you with his feathers, and under his wings you will find refuge ...
    —Psalm 91:4

    So happy to see you this morning, Hannah. You are beautiful, inside and out. You are loved, my sweet. You are a blessing to me.

    p.s. How did your statistics quiz go?

    1. Thanks Mrs. Garland! I love that verse.
      It was great seeing you, too. I think I nailed my Stats quiz, but we'll see. I don't want to jinx it. =]

  4. I just have to say /thank you/ for posting this.

    I've had Lyme's since I was six (that's ten years, now). Thankfully, I've been blessed with a strong immune system, and even after ten years, my case is nowhere near as bad as many I've heard of (including yours, I'm guessing from what you described). But I still struggle with so many of the things you mentioned.
    I have no idea what it's like not to deal with Lyme's-- I can scarcely remember that far back. I often find myself wondering how God could let this happen to me-- even screaming at him to take it away. And even though I've in some measure gotten used to it, having dealt with it so long, I still view "normal" as something everyone else has that I can never possibly reach.
    So thank you for reminding that this is my normal-- and that's okay. I know for sure I wouldn't be the same person I am today if I didn't have Lyme.

    And to make a long comment even longer, I just want you to know I'm praying for you. :) Stay strong!

    1. I did not know you had Lyme, Gemma. I'll be praying for you, too. Thank you for the great comment. It's funny how similar people's lives are, even though we have the tendency to think that we're all alone in our struggles. Thanks for the reminder!

  5. Thanks, Hannah. I just had that revelation a little bit ago, too.

  6. This was beautifully written and wonderful. Thanks so much for sharing and the reminders of what it is to truly live life.

  7. A lovely personal essay, Hannah. It's a privilege to read your thoughts... I think you've got the right idea, the right attitude, and also - amazingly - the strength to hold on to it. You are very brave. And very beautiful, inside and out. Hugs :)

  8. I am so happy that you decided to keep a positive attitude. I know how difficult that can be sometimes, especially when you're struggling so consistently. Your words are so beautiful and heart felt and I applaud your courage to share them. Keep that beautiful smile on your face and know that you make a difference in the world even though you may not see it.

    Rock on girl! Keep your heart filled with love.

    p.s. I agree that restraint from killing people is a skill that is under appreciated these days... ;-)

  9. Hey, thank you for this. Seriously girl. I've had Lyme for almost 22 years now... I'm almost 24.

    At 2 years old I got Lyme, but the doctor thought it was just a rash. He ignored it for weeks. My mom fought him. Finally she got him to do a test and it came back positive... she found out 2 weeks after the test. I was left untreated for over 40 days. When they finally got me on antibiotics I was already in full arthritic conditions. With some help from a smart person and the antibiotics, my mom used some awesome oils and put it into remission.

    However the damage was done. All it took was 1 spectacularly arrogant doctor to ruin my life, or so I kept thinking. Growing up I had depression, anxiety, pain, poor memory, etc... THAT was my normal.

    I never realized that the Lyme my mom told me about from childhood was still with me. It wasn't until I started realizing I had arthritis and then Fibromyalgia that I thought, I wonder if this has anything to do with that Lyme Disease my mom told me about. So then I started reading... And now the crippling pain, the memory loss, the arthritis and the Fibro all make sense. I'm a Lymie.

    Sometimes I get so angry that I cry at the unfairness. Sometimes I have peace with it. Sometimes I rail at God and demand to know why He made me just to turn out to be such a spectacular fail at life.

    Then I look at my husband and 3 young sons and I realize something. God gave me a life. Sin and death gave me sickness. BUT JESUS gave me ETERNAL LIFE. And as long as I'm on this planet, hurting or not, I am going to invest every moment I have into my family, my ministry, my writing, and my passions. Lyme is a part of me, but it DOES NOT change God's plan for my life. I can still be useful. I just have to stop being so angry at God and start surrendering to Him.

    Thank you for sharing your story. You've encouraged me greatly, knowing I'm not alone.

    1. You have an amazing testimony, Kira. Which I know sometimes isn't much of a consolation. =] It's hard to look at everything that Lyme has taken and not get angry. But I was thinking about what you wrote about looking at Lyme and then looking at your family. On one hand: something horrible. On the other: something beautiful. It's a shame that that is so often how things work, but you seem to have found the right way to handle it. Lyme may be a part of you, but it is not all of you. It is not where your life ends.

      I'm so happy to hear that my post encouraged you. It's funny, but your comment on my post inspired ME. So thank YOU for sharing YOUR story. I will be praying for you and your journey to surrendering. Keep being amazing!


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