This isn’t something I’ve really ever talked about on here.
I’ve mentioned it before, but I’ve never really gone into detail about it. I’ve thought about writing about this before and sincerely wanted to, but just never was really sure how to go about it. I think it’s easier to be vulnerable about things you have gone through and you feel like are in the past, but it’s harder to talk about the things that are still very real and very present…the things you are still struggling with that make your heart ache pretty deeply.
So during a particularly rough time for our family I figured it’s time to share a little bit. I do not share this for pity, nor for attention. I share this for anybody else who is battling a chronic illness or is relationally affected by one…to know you are not alone. I also really want people to be aware of the people in their life struggling and to give grace…just give a lot of grace. Lastly, I want people to be aware of the real possibility of getting Lyme. I just had friends get bitten by ticks and it hit me how badly I wanted them to stay healthy. I want ALL of you to stay healthy as well.
When I was little, I felt like my family was the family that looked liked they had it all together. Not just looked like it…I thought we did. My dad was (and still is) an elder at the church he’s been going to since he was born. He was the pharmacist at the local drug store with the old soda fountain and grill that was THE hangout spot in town. To know him was to love him. And my mom was the best (also still is). She was the mom who was always helping at the school. The kind of woman that strangers would come up to in the grocery store and tell their life story to because she listened so well. They both helped with everything at the church. They taught classes and lead Bible school. We lived on a lake. My sister and I made straight A’s. Kelly and I had so much fun together. We stayed outside everyday until it got dark being silly and playing games. We were living in a small town where everyone knows everybody and since my family had been there for so long, everyone knew me. We had our daily family devotionals and my sister and I were put to bed every night with dad singing a worship song, a prayer, a kiss, and an “I love you.”
In this past month I’ve been reminded of some of those memories and how things used to be. It’s crazy how things change over time without us even realizing it until something comes in and just completely takes us back in time. For me it was a worship song someone started to sing while we were in Peru. It was the song my dad sang to me at night. The one that goes”
“My Jesus, My Savior
Lord there is none like You…”
It completely took me back in time and I found myself crying on the bus thinking of how much has changed since then.
It happened yesterday as something threw my memory back to when my sister was 10, and what life was like back then with her.
And it just hurt my heart as I grieved the loss of what life used to be like.
And there was one thing that came in and took so much from me:
It just came in and started taking things slowly to where I didn’t notice it immediately. I guess we just adjusted. It would turn us a little off course and as a family we changed with it. But now I’m looking back and realizing how it wiped us all completely off course. Because it just kept taking and taking and it just keeps taking and taking. It’s stolen so much.
My dad was diagnosed after a family trip to DisneyWorld when I was in 4th grade. He just felt so sick and didn’t know what was wrong. He felt like he had the flu really bad and he’d also been having a lot of memory problems. All the doctors he saw just told him he was getting older. He finally went to the Mayo Clinic. We were in the car on our way to our hunting camp in Texas when he got the call telling him he had Lyme disease. I remember my parents just being glad to be given any diagnosis but none of us really knew what we were about to be in for.
So without getting technical and medical, Lyme disease is a bacterial infection from a deer tick bite, that attacks your neurological system…like your brain and your nerves. It brings on things like brain fog (like thinking is foggy), anxiety, depression, chronic fatigue, stiff joints and achey muscles, and on and on, and sometimes even death. My dad has compared it at time to Mono. It just rocks your world and gets in the way of everyday life. Everything is harder. It can just leave you kind of bed-ridden. You can have some good hours during the day, where everyone you know thinks you’re fine, but those other 20 hours are where you pay for those few good ones. It can differ by the weeks. Good weeks and bad weeks, good days and bad days.
Flash forward to middle school. By this point my mom, sister, and I had been tested and all of our tests came back positive. Many doctors believe Lyme can’t be sexually transmitted, but LOL at that. Yolanda Hadid, Gigi and Bella’s mom just came out with a book about her battle with Lyme, and apparently 2 of her children have it as well. So there’s another family.
Me being diagnosed really didn’t phase me at all. I didn’t tell people for a long time, not even our church. Most people look back on their middle school days as a horrible time of bullying and awkwardness and hate it for that. The only thing I really remember of middle school was starting to fight with my dad a lot. We had been best friends, but then I became a moody teenager and he became easily irritable from being sick. We butted heads a lot and I just felt so confused as to why we weren’t getting a long. My parents argued more and my sister didn’t have enough energy to play with me. I felt so alone then. I felt like no-one understood me. My parents were searching all over for a doctor. He tried countless different treatments with no avail…one even left him legally blind for a while.
By high school I was feeling affects of it. I’ve always been super active, but by my junior year of high school I felt SO tired. It didn’t matter how much I slept I was tired. I started going to a doctor more regularly then and he told me it was most likely triggered by the stress of transferring schools. So basically stress is a trigger that makes me more tired-when I’m tired I can’t get things done that I need to get done which makes me stressed, which makes me more tired. What a wicked cycle. But I pushed through. Those last years two years of high school I struggled with some depression but didn’t owe it to Lyme. I just didn’t want to believe that Lyme was a big problem in my life. I though if I ignored it, it would just go away. So dumb, but I just didn’t want to believe it.
So here we are now:
I’m in the middle of my last two years of college. I’m healthy enough to be active and do things, but it always comes with a price. Always. My family has been to countless doctors all over the country and no one is any healthier. Dad and Kelly just started new treatment and their bodies are taking a hard hit. Lately there’s been a lot of tears. By everyone. Everyone carries the weight of their own illness, but also the weight of each others’. It’s affected every aspect of life. My parents’ marriage and my own marriage. My dad had to quit working probably 10 years ago now. We wonder if my sister will be able to push through nursing school even though she has gotten straight A’s and honors in all she’s ever done. I’ve heard my dad ask to go on to heaven countless times. I feel like I’m living in a body that won’t cooperate with me…it won’t do its job. We have countless things we’re not supposed to eat. Flying is tough for him, so I don’t see my dad as much. I just emailed a new doctor and am hoping for good things there. Then there’s also thinking about passing it on to our own babies one day. There future holds a ton of uncertainty.
Lyme sucks, but God is good.
We don’t understand, but God has a plan.
We may no have healing on earth, but God has got healing waiting for us in heaven.
We feel alone and misunderstood often, but God understands it all.
It’s not always easy to believe God is good in the midst of this. Sometimes it feels impossible. But we have to hold on to what we know. We’ve prayed for healing for years, and just because God hasn’t answered our prayers in the way we would like for Him to, doesn’t mean that He is not at work. I have to believe He has a plan, and I believe in whatever He is doing He is going to be most glorified. I’ve been thinking about the glory of God a lot lately. And maybe God put it on my heart when He did specifically for this post. We’ve always prayed God would be glorified in our lives, and sometimes He answers prayers in ways we wouldn’t have chosen. Honestly I still don’t know what He’s doing. I can certainly see His kindness and goodness in our journey so far, but pain and uncertainty still loom over us. He gives us a hope and that’s what I hold on to. So we just keep hoping and keep praying which sometimes feels pointless. A lot of the time I feel like theres no point in praying for healing anymore, but I have to tell myself to keep believing that God is in the miracle-business and that He is in it for me…just because He didn’t bring healing yesterday doesn’t mean He won’t today or tomorrow! It’s crazy how He reminds me of that too…
A friend of mine hurt her arm really badly in a car accident a few years ago. We didn’t know each other at the time of the accident and when this event happened, we honestly didn’t know each other that well even then. But one night we were at the same event at school talking and I felt the urge to pray for her. For years her arm brought her constant pain and she couldn’t use it to even open a door. Something inside of me though reminded me of all the unanswered prayers for my own family, but I prayed anyway. I’ve never felt the Spirit like that before. I’d also never witnessed a miracle like that before. Even typing this I still get chills. By the end of the prayer her, her boyfriend, and I were all sobbing. She started to move her arm and before we knew it she was on the ground doing a pushup and freaking out at what was happening. We cried even more and praised the Lord. By the end of the night my friend had done 2o push-ups and even lifted up a chair! To this day she still has full strength renewed in her hand. I left that night in awe of the Lord. I felt so humble He would even use me, especially since I have been doubtful of healing. But I think that’s why He chose to use me. He let me witness His power and strength that night and it was like He told me “Mary Kate, I am strong enough and I am more than willing, but in my time. Don’t give up hope. Don’t stop trusting me.”
Even last night talking through things with that friend it hit me:
Where illness, of any kind, comes in and takes and takes, God continues to give and give.
He’s the One who gives peace that surpasses all understanding.
(Isaiah 26:3 “You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.”)
He gives us joy that can withstand anything going on around us.
(Psalm 16:11 “You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.”
He gives grace. He gives enough grace for today, and tomorrow He will give us enough grace for tomorrow.
(Lamentations 3:22-23 “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning great is your faithfulness.)
He has given us Himself. Which is the greatest gift of all. We have access to the Father and Creator. He listens to us. He knows us. He created us. He loves us.
This isn’t a post where I have a lot of advice to tell you because I got through it…and that’s because I’m not through it. It’s a tricky and confusing thing. Amongst the confusion and uncertainty I know the Lord to be constant.
Even if I don’t always “feel” it, I know these things to be true:
God is good.
God is all-powerful.
God is good at being God.
So these are my hopes for sharing this with you…
To anyone battling chronic illness or has a family member battling it:
I’m sorry. I’m sorry your dealing with this. I truly am. And I am praying for you as I write this. I’m praying you can hold on to hope that God has a plan for your life. I’m praying you will persevere in prayer. I’m praying for strength for you and energy. I’m praying for an ease of your pain. I’m praying that you would be surrounded and loved and lifted up by friends and family. I’m praying that the Lord gives you peace. Your life may not be the same as it once was, but there’s still so much beauty that the Lord offers in this world and I pray you would look for it everyday. I pray that it will refresh and renew your soul. If you are feeling dry in your faith or far from God, meditate on these verses. These are the verses I focus on when I’m feeling like that. I just write it on my hand and say it over and over again in my head or out loud.
“Create in me a pure heart, O God, and renew a steadfast spirit in me…restore to me the joy of your salvation and grant me a willing spirit to sustain me.” Psalm 51: 10&12
Because even in a sick body, its possible to have a steadfast spirit to help carry you through.
To anyone who knows someone battling a chronic illness:
I hope you might understand a little better what they are going through. I hope you can give them grace and give them a lot of it. I hope you will be empathetic. I hope you will pray for them and pray with them. I hope you will encourage them and let them know you love them. I hope you’ll try to understand when they say they can’t do something and not take it personal. I pray for you as well. I pray that you live under the fountain of God so you will constantly be filled and share your overflow with those hurting around you.
I hope we’ll all be a little kinder to one another. I hope we’ll consider the fact that we don’t always know what others are going through. I hope we’ll choose to speak kind and uplifting words to everyone and less words that tear down. I hope we’ll even go out of our way to speak life. I hope we’ll pray for one another more and love well.
Lastly I also want this post to put our awareness for Lyme disease. Lyme comes from a deer tick. Usually the tick bite will show a bullseye rash around it if the tick is an infected tick, but not always. Lyme is preventable at first by a round of antibiotics. To be safe, if you ever pull a tick off of you it is a good idea to go to the doctor and start on an antibiotic. Most doctors do not take Lyme disease very seriously, but that’s got to change. If someone blows it off, find someone that will not blow it off. I hope the seriousness of this disease will start to get out there and lots of people will be spared of its long-term effects.