Leaky Pipes

Does it not make a great difference whether I am, so to speak, the landlord of my own mind and body, or only a tenant, responsible to the real landlord?

C.S. Lewis: Mere Christianity

This quote… It stood out to me so much the first time I read through Mere Christianity. As I have worked through this book a second time, revisiting previous underlines and notes has been such a fun experience. It has also been so incredible to see the way those same quotes and chapters can take such a different meaning or reveal something so new the second time around.

I was fascinated by this analogy. The thought that my body is a home built by someone else that I am simply blessed to be residing in is such a wonderful way of understanding the relationship between our body and spirit. It is also SO important to realize we cannot ever have enough to purchase our own “homes”. They are so beautifully built that only the blood of Christ could pay the price. He has not only created this beautiful home for my spirit, He owns it, too.

As I followed this train of thought, I was so thankful. My body is truly an incredible thing. The fact I have been gifted it is so overwhelming. But as I thought through this, less positive thoughts quickly filled my mind…

Obviously God has created my “home” and it’s beautiful in appearance, but is it really fair I seem to have quite a few “leaky pipes” with my health? They cause so many issues that I seem to always be trying to fix. Why couldn’t I have had a “home” that is perfect?

How sad is that? How incredibly sad is it that I can be SO blessed to have something so beautiful, and I can only appreciate it for about ten seconds before I suddenly feel sorry for myself.

But that’s so easy to do when I feel like I am constantly fighting. It’s so exhausting. I recently made it through another week of poor health. I haven’t slept more than 4-6 hours a night in a week. Lack of sleep and brain fog are making me feel like I’m walking through a dream instead of reality. My joints seem to be screaming at me. Eventually I just reach a point I am so tired and sick of being sick. I come to a place where all I want to do is curl up in a ball and cry. Cry hard and somehow miraculously come to a place of peace without pain.

It’s draining. Physically, mentally, emotionally, and spiritually.

As I sat there, feeling sorry for myself, thinking about this flawed “home”, I heard the Lord say, “Darling, do you realize you don’t love yourself?”

Is it strange to say this almost offended me? Growing up, I had a difficult time relating to other people who struggled with self-image. I never seemed to have trouble seeing the beauty in the way God created me, at least when it came to physical appearance. Even now, when I see others struggling to see the beauty God has given them, it hurts my heart and I so passionately want to help them see it, but I have never had a clue how to understand where they are coming from to start.

So I was confused. How can I not love myself? I know God created me in His image, I know He made me to be beautiful in His eyes… so how can I not love myself?

“Do you realize you can appreciate your beauty and still lack appreciation and love for your physical body?”

Suddenly I saw a picture so vividly. It was an archway- a doorframe- in a home. One I saw in Pinterest months ago that I loved, but forgot to save. It was different than most doorways. Built to be an odd shape, it had exposed brick and almost seemed like someone had knocked a hole in the wall and decided to leave it. It was such an interesting design and so unique.

“This is your health.”

I am made in God’s image. Following this “home” analogy, that means God designed billions of houses, right? And each one is modeled after His own house. Every house contains pieces of the architecture, design, and decoration of His own. They are modeled after His, but unique in their own way.

I was given one of these houses. For free. Because Christ bought it for me. He is the landlord, I’m just a tenant. Well, I obviously really appreciate this house. From the outside, I can see it is very beautiful. The architecture is pleasing. Most of the inside is as well. However, I notice this doorway in my new home. It catches my eye almost immediately. It is not easy to miss at all.

Unfortunately, I decide immediately I do not like this doorway. It looks like something is broken. Actually, what it looks like is someone broke the wall and decided it wasn’t worth fixing, so they slapped some paint on it and called it a day. So, because I don’t like it, I start calling my landlord every day after I notice it. I don’t like it, so He should come fix it for me. In the meantime, I do everything I can to patch it up, cover it up, and get rid of it. But nothing seems to work.

Actually, I get quite irritated because I know the landlord knows EXACTLY what I am complaining about. I can’t understand why He won’t come fix it. Until today. Today, when I call again, very upset about this doorway, He responds saying, “Have you ever thought maybe I designed it that way for a reason? Actually, this house is still mine, and I think that doorway is beautiful. In fact, that doorway is modeled after one in my own home.”

Where my eyes see something broken, His eyes see a work of art. I see something poorly designed, but He sees something that took time and thought to create. My eyes only see a problem which needs fixing, but He sees something beautiful.

There are no leaky pipes. My house is very well built. It was perfectly designed. Unfortunately, there is a part of it I am struggling to see the beauty in. It still looks a bit lopsided to me. But the truth is, it was very carefully designed by someone who sees it as perfect.

Wouldn’t it be so sad if I live in this house my whole life and choose to say I hate it just because of one doorframe I don’t like? It seems like such a big deal even though it’s such a small part of this beautiful house I have been given. Maybe it’s not my taste, but this house doesn’t really belong to me anyway. I’m just blessed to be living in it while I’m here on this earth. Even so, I think if I’m going to live in it my whole life, I should probably take time to try and appreciate the thought and creativity the architect put into creating this whole house. Every single part of it.

It will take time for me to be able to see my health as something beautiful. My body and I don’t get along very well most days because of it. It will take time for me to learn to appreciate something I struggle to see the beauty in. But thankfully, I know it was part of the blueprints for my body. God didn’t make a mistake. He put time, thought, and care into creating me the way He did.

It may take time for me to really know it, but I am beautiful in every way. No leaky pipes.

Zebras

Day of the Zebra ~ January 31

For those of you who don’t know, today is International Zebra Day! This may seem like an odd thing for me to be excited about and writing a blog post on, but today has special meaning for me. (And no, it’s not because zebras are my favorite animal. I love turtles, in case you were wondering.)

Today is very significant for me because I am a zebra.

I have something called Ehlers-Danlos Syndrome (EDS), which is a genetic disorder. More specifically, I have the most common type of EDS associated with Hypermobility (hEDS). hEDS is the only type out of 13 forms of EDS that does not have a genetic test. This type affects both large and small joints. Dislocations and subluxations of the joins are a common problem, and many issues with the skin (including strechiness, fragility, bruising, and scarring) may also present themselves. Many people also struggle with musculoskeletal pain that can be debilitating. These symptoms vary in severity depending on the person and present themselves uniquely in each patient. (Special thanks to my friend, Trina, for sharing some of this information on Facebook yesterday.)

We are called zebras because of a saying in the medical field “when you hear the sound of hooves, think horses, not zebras”. “Zebra” refers to a rare disease or condition. This statement is taught to medical students as they go through their education, teaching them not to assume the worst in patients and to instead search for a more common issue. Because of how rare EDS is and the way it presents itself, patients are often misdiagnosed or struggle to reach a diagnosis. Zebras are recognizable when they are found, but each of us has different stripes and patterns (which is the way EDS presents itself in our bodies).

Now, I am not going to write this post recapping my health journey, and I am not going to write it to “raise awareness” in the way most people might. However, with today being so significant for EDS, I would like to take the opportunity to briefly share my testimony and the way God has walked beside me through my health journey. (I could probably write a small novel about my health journey, but I won’t bore you too much with details.)

For several years I have battled two different health issues. The first is called Bartonella, which is an autoimmune disorder similar to chronic Lyme. The second is, as previously stated, EDS. After these disorders began to present themselves in my body, I went through over a year and a half of doctors visits with multiple specialists at three different hospitals, found out many new things about my body and the way these disorders affected it, and struggled with extreme frustration. Finally in 2017, after almost two years of stumping every doctor I saw, I was told I have EDS.

The day I was told I had EDS was one of the best and hardest days of my health journey.

I was so relieved to know, but it was hard, because EDS does not have a “treatment”. Because it is a genetic disorder, and because it presents itself so differently in each patient, each person that has it has to basically deal with it and learn what to do to keep symptoms to a minimum. For me, this means watching my stress levels, making myself rest, and working out daily in order to keep my body strong. It also means praying for healing every chance I get.

As I walked through the time of not knowing what was going on with my body, I struggled a lot. I isolated myself from people, struggled with my identity, and dealt with frustration every day because I didn’t understand why I had to deal with so much pain each day. It was confusing, irritating, and exhausting.

Isn’t it beautiful, though, how God meets you where you are in those seasons?

Admittedly, I pulled away from God during that time. It was extremely upsetting to be prayed over constantly but never see healing. It was angering to go through every day with pain and not understand why. I wish I would have seen how desperately I needed Him in that season.

He was with me through it all, even when I didn’t see it. He placed wonderful nurses in each hospital to help, even when the doctors were irritating. He helped some doctors find some pretty significant things that could have been easily missed. He placed a desire in my heart to enter the medical field and help others like me. He brought people into my life that supported me and are now some of my closest friends. And most importantly, He is healing me.

Today, I still struggle with joint pain and other issues, but God has helped guide me to finding ways to minimize it. I haven’t visited a single doctor for my health in over a year (praise God!). On the days my symptoms flare up, He has blessed me with jobs and school that are flexible and can offer me a chance to rest. I also am truly learning and experiencing the incredible love of the Father every day. He has guided me into a place of rest filled with His Spirit. My relationship with Him has strengthened more than I could have ever imagined, and He has given me a desire to strengthen it more and more every day.

I am on the pathway to healing. And I am believing there will be a time in my life I will experience total healing in every area.

I am so blessed to be in a place now that I feel comfortable sharing my story, even though I am still writing it. Although it has been hard, I am so thankful. I hope that by sharing my testimony and thanking God for His faithfulness, I can encourage others and help share the hope that God has given me.

I want to spread awareness, not to make people feel sorry for me, but to create a community of support, encouragement, and prayer for those that also struggle every day (with EDS and anything else). My prayer is that a “diagnosis” will become a testimony for someone else in the same way mine did.

More than anything, though, I want to thank God for everything. For His healing, hope, joy, faithfulness, and everlasting love which have been with me every moment over the years.

Thank you, God, for creating me so perfectly. Thank you for making me a zebra.

This is a picture (although difficult to see) of a five inch scar that stretches across my back. Although it is from Bartonella, it is a permanent reminder for me of the journey I have experienced and the ways God has come through every time.