My mind has been struggling recently with things that didn’t used to be a problem. It’s a common side effect known in the chronic illness community as “brain fog” but at the end of the day- whatever you want to call it- it’s that the pain is so intense I can’t always remember. It actually is embarrassing to me because it seems to be happening more and more recently. A little telling of how things have been.

So the “notes” in my phone are all over the place with half thoughts to not forget. And sometimes there are quotes from people I love that I wouldn’t have forgotten before but maybe I would now, if I didn’t quickly write it down. And then I look back and they are like little treasures in my phone I find regularly. And some of the notes are clips for future blogs- and while those aren’t treasures- I almost forgot that I wrote it and I’m so glad it’s saved for me to expand on later. A gift for my foggy brain. (Thanks to the iPhone for having a notes section!)

I wrote something during my last infusion in a note that I had forgotten and I just came across it- it’s written to the Lord.  It says this,

“You’ll find me here.
Right here.
Tucked in.
Holding tightly to You.
Safe.
Held.
Whispering, ‘hineni’
While machines pumping medicine into my veins loudly beep
I’ll be on the 7th floor
Washing my hair on the bathroom floor
Reciting hymns, choruses, scripture truth that remind me who You are
You’ll find me here.
Right here.
Tucked in.
Holding tightly to You.
Safe.
Held.
Whispering, ‘hineni.’”

When I came across it, I remembered exactly how I felt at that moment. It was one of these moments that have been happening more often right now- where I feel both so much pain and so much assurance that the Lord is with me. I was on the bathroom floor of a hospital room, processing a hard day while washing my hair and also feeling thankful for help and that I was surrounded by the team that makes me feel most confident about my care. I was on the bathroom floor whispering truth to my heart while also feeling so teary. God really can meet you anywhere- even on the bathroom floor. Maybe especially there. Sometimes I feel like I hear Him loudest and feel Him most when I’m in a hard place or rough state. I wrote this right after crawling back into bed. And while we could swap out a few words today -this sentiment- I feel this today. The pain inside my body has become more and more humbling-in ways I’m still not completely sure how to explain. And this season has, honestly, been so hard. Most recently, I’ve been feeling it more intensely. More pain, more diagnoses, more treatment, more medicine, more doctors, more medical bills, less sleep, less rest, less “just for fun”, less social, less travel, less vacation. 

And with that comes big questions, big feelings, and many unknowns. 

Just being honest. I know that’s uncomfortable. 

And – hear me loudly- this is equally true- the Lord is near. 

I’ve tried multiple times to explain how I’ve felt it, witnessed it, and experienced it recently. I have half started blogs and notes to try to put to words how beautiful it is. And I continuously come to the conclusions that words just don’t do it justice. I just- feel Him closer (maybe deeper?) than I think I ever have in my life. 

And you know what? For me, that does not eliminate the hard….at all. It just means it’s so wrapped together that I am okay even when it feels like that’s not really true. It is.

I’ve had multiple moments in the last few months where something awful or terribly hard has happened in my medical journey-  but the story would be incomplete to share it without sharing how something incredibly beautiful happened in the same experience too. A “both/and” of sorts. I know that might not make sense to you. But it is what’s happening. Some of the hardest moments I’ve known and some of the most beautiful things wrapped/intertwined in it. And I just wonder if the story that’s being written makes it impossible to separate the hard from the beauty.

I want to pause and acknowledge that I know that this makes some people uncomfortable. We want to hear “life is beautiful” and that is true. And also “life is hard” and for some people that’s not really what they want to hear especially if you are a person who needs to “fix it.” I know. But I think one of my passions in the last 16 almost 17 years now of pain has been discovering what it looks like to hold space for both. And learn how we can walk with people well through their hard thing. Forget if it’s chronic pain or multiple new pain disorders. Their hard, (your hard) could be marital, trying to conceive, miscarrying, parenting, special needs, mental health, financial, loneliness, sickness, grief, work, friends (or lack there of), waiting for something that seems to be nowhere around the corer, and on and on. I am convinced that life would be more beautiful if we learned as humans how to walk with people in both their joy and their pain. And, if we were okay knowing that those aren’t always going to come out even. Some seasons hold lots of confetti and celebrations -some hold lots of tears and pain. 

I’m a big confetti thrower- but gosh, there has been so much hard in my life recently. 

Sometimes it feels too hard to write here when that’s true. I feel like no one wants to hear that- it’s uncomfortable especially when that’s not your season. Trust me, I get it. And being really honest with you- it makes me uncomfortable when other people are uncomfortable and need to throw out a positive thought to try to fix it. So-if you feel tempted to do that with me, please give yourself permission to stop reading. I mean it. It’s okay to bless and release this- to bless and release me. The reason I write is because then I encounter these moments with the Lord. Moments where I see that He didn’t let that horrible hard thing be left without so much intimate beauty wrapped around it so I can’t separate the hard memory without a beautiful reminder that He was near. And I am reminded that these moments have to be shared too. Because maybe right now you also feel like the hard is so heavy or lonely or impossible- and maybe you need an invitation to see how God is working in it too. 

Sometimes it is easy to see and sometimes it feels like there is nothing to see. I get it. I guess that’s why people have a practice of keeping gratitude journals. I’ve been known sometimes to really have to look hard–and see where I see the good and the beauty. Sometimes it is really little. Currently the request is something like, “God, I can’t do this without You. Please help me feel You near.” And sometimes I see it in big ways- and sometimes it’s something so little but I know it’s a reminder of God’s faithfulness and His presence.

I believe that part of what the Lord is teaching me in this season is how to feel Him near when that seems nearly outrageous. And that’s changing me too. I ask harder questions of the Lord right now. I cry more often right now. I pray bigger prayers right now. And I haven’t stopped whispering “hineni” (Hebrew for- “whatever You ask, I’m already in agreement to it”) because honestly? I trust Him. Even when this seems so confusing to feel more pain.

Really what I’m saying is- I know He hasn’t left me in my hard. And I know He doesn’t need me to pretty it up for Him. I can take my big feelings to Him. I can say all the things. And He doesn’t leave me. And honestly? More often than not, it feels like He’s somehow whispering back to my heart, “I know. I’m right here.” 

When pain gets so loud- and right now-it is so loud. I have to remind myself even more regularly what is true and why I believe what I believe. And I believe the only reason I’m still moving these days is because of the Lord. 

That’s a lot. 

And- if we sat across the table together – I could tell you story after story of how He has made me smile in deep pain. Things I say to Him only that I then see throughout the day or in a painful moment. Stories of how He has surprised me in beautiful ways while also seemingly allowing more pain in my body to be part of the story today. It’s both. 

It doesn’t change the hard. It doesn’t change the pain. It doesn’t change the volume of appointments. It doesn’t change the unanswered questions and broken dreams. It doesn’t change the medical bills. It doesn’t change my limits in hopping in the car to visit people I love. It doesn’t change that I still can’t dry my hair. It doesn’t change my new pattern of needing to cancel because pain is so intense it’s making me sick. 

It does change how I see this life. This beautiful and hard life. It does make me feel more passionate about walking with people in the middle of their hard and encouraging us as humans to learn to do that better for each other. It does make me change how I check in on people- what I ask- how I pray- what I say- how I can meet needs or just simply sit quietly better. I’m still learning all of this. But I see that becoming a little clearer in this season too. 

Thanks for listening. I have no conclusion. Blame the brain fog, I suppose. Or just -the fact that everything doesn’t always need to be wrapped up in a beautiful bow.

Adonai, thank you for being here in the middle of the hard. Thank you for being big enough to hold it all -and desiring me to come with all my questions and feelings. Thank you that this isn’t too much for you. Thank you for never leaving me no matter how intense the pain is. I trust you. Hineni.

**If you care to read- as a conclusion- I’ll end with three thoughts or ideas on how we can all maybe look out for our people who are walking through their hard:

1. If you personally are a person who struggles with boundaries walking with someone who is struggling can be really hard. Go back to “Bless and Release” from earlier. Don’t’ feel guilty for needing boundaries- but you also don’t need to announce them unless it’s really come to that. For example you don’t need to say, “This is a lot for me to hear but I’m able to text if you want to tell me.” (well now i want to tell you nothing) but you might say, “I’m driving for the next twenty minutes and I thought of you- and thought I’d check in and see how you are.” (now I know you only have twenty minutes but care to check in) It’s okay to have boundaries in the way you enter in just because the person you are caring for doesn’t get to have boundaries on their situation like they may desperately wish for. It’s not your job to fix it. It’s your job to be a friend who’s not scared nor runs away. To do that- that often requires some kind of boundaries to “stay in the game.”
2. Try practical support. Here are some ideas with suggested wording that you can adapt to sound more like you/your friend’s situation. Try to avoid “If you need anything let me know” unless you are close enough to the person that they can actually tell you. Most people need specific suggestions and a little nudging:
   – “I’d like to drop off dinner to you. Does that sound okay? If so, what sounds yummy to you or do you want me to give you a few options? Would Monday or Wednesday work better?”
   -“Can I take your kids for a few hours on Saturday or on a Saturday coming up? That way you can nap or do something for yourself.”
   – “I know you drive a lot to doctor appointments right now. I’d like to help pay for gas or co-pays. Please let me support you today in this way. I’m going to venmo you.”
   -“I’m running errands today. Are there any errands I can run today for you too? I mean it. I’d love to help!”
   -“I know I can’t change ______. But I’ve been thinking about how I can help with other things. If I came over for 2 hours, is there something I could either do with you or do for you that would feel good to cross off? (think- cleaning, laundry, gardening, random house projects, or something they might have gotten behind on. *Consider that this is best for closer people than caring acquaintances.
3. Try surprises. Sometimes our friends don’t’ want to talk about it and just need to know they aren’t forgotten. Surprise them with a coffee at the door without knocking or staying and texting a picture of it outside. Surprise them with a door dash gift card in their email for them to choose something that sounds yummy for dinner or a treat to come right to their house. Surprise them with flowers or balloons or a care package. Surprise them with a treat or something you know they like on a hard day or a big day you know is coming up.