I'm sure this won't be our last bout with pain and suffering. There will be more seasons like this to come. But our hope in sharing our story during this particular season in our life, is that it might comfort and encourage someone else so you know that you are not alone.
We would never have written these words in our story. These words of immense pain and hurt, penned from a dark journey through the unknown and unwanted would never have been uttered from our lips voluntarily.
But life doesn't ask us what we want. We are not in control. And so in the depths of the darkness we were torn apart to be built again.
But good doesn't have to feel good.
We spent two years [though you will only read our last summer] silently suffering with an unusual illness that affected everything, our mental health, our sanity, our marriage, our relationships, our sanity, our marriage and our physical health. It was B's sickness but it affected us both. Of course the other side of anything gives clarity, perspective even but in the midst of it we felt like we were drowning, gasping for air and weary from treading for so long. In hindsight we see how God used it for good though it did not feel good. Everything we had held so tightly to he pried our fingers from, idols we’d long held. Comfort. Happiness. Health. Control. Certainty. Understanding.
As everything became bitter, He became more sweet. And maybe that's what all of this was for, to cling more tightly to Him. I don't really know, but what I do know is that it was painful and hard and through it all God never left us.
“We haven’t been doing well. We have been silently suffering for a long time. But it feels good to finally get it into the light. To not be afraid anymore of feelings and labels. We were never meant to hide, to live a life in the darkness. It is a great grace of God to call us out, to take our shame and our sin away from us, because in Him there is no more condemnation. He has seen our deepest struggles, our biggest hurts and darkest sin and He is not afraid. He has never once left us, nor forsaken us. He is with us and working in us even when we don’t see it or believe it.
We are walking towards healing, hoping that doctors and counselors can help us find a way out, but ultimately I feel like God is trying to push us in towards Him. When life starts falling apart, who will repair you? When circumstances are too heavy, who will shoulder the weight? When the unknowns and sufferings become more than you can bear, where do you turn?
Over the years we’ve turned towards many things, but the Lord is gracious to continue beckoning us to Himself. For He is the only one who can fully restore, heal our soul and give us rest. Even if the sickness never leaves.”
The journal starts here, after two years of living in chronic illness affecting our mental health + marriage.
Lord heal him. Take away his nose problems. Thank you for healing his heart, for redeeming our relationship and sanctifying our marriage. I feel you working, I feel you here. I feel you teaching me and showing me that you are good, even when it doesn’t look like it.
I just pray Lord that you would heal his nose, that you would heal his body just as you did with those in the Bible, with a touch of their hand to your cloak, your hand to their body, a simple ask. Please Lord Jesus heal him.
God where are you? What are you doing? This feels so dark and distant from anything good. I’m afraid for my husband. He doesn’t want to live and I’m so afraid he’s going to hurt himself or end his life. I don’t want to do this life without him.
He’s so sad, so done, so ready for this to end. He’s struggling with his nose. It seems he has more bad days than good; days where he smells bad things all the time. His circumstance is bringing out his anger, shame, sadness and wanting to die. These are really big issues. I feel so small and so helpless. Will you keep him from killing himself, from being a widow? Will his nose thing ever go away? What are you doing?
We need you to move in a big way. Holy Spirit protect us, our marriage, his life and give him the strength to live.
I was alone, for an hour today, alone and I didn’t know where B was. It was the longest hour of my life. He didn’t take the car so I knew he was walking but to where and to what I didn’t know. I was so afraid. Afraid I would get a call from the police that they found a body, afraid he wasn’t going to come back, afraid because I didn’t know what was happening or going to happen.
I just sat and prayed and prayed and prayed. Nonsense I’m sure. Heal him, over and over as I rocked to comfort my shaking body. I didn’t want to call anyone. I didn’t know what I would say or how B would react if I did, if he came home. I’m afraid that our life will always be like this, this constant unknown; fear and anxiety plaguing me, depression and anger following him.
Finally I couldn’t wait anymore, I was going crazy, so I decided to take Jedi on a walk and just look around our neighborhood to see if I could find him. I felt insane, our life is insane. I got Jedi all hooked up, her choky collar on for control and off we went, down our sidewalk.
I didn’t make it far. As we came around the corner near our house B was walking towards me. I was so scared and thankful he was alive. I was afraid to make eye contact, of what I might see. I nervously walked towards him, Jedi oblivious to the discomfort between us. I felt estranged from him and him from me.
He turned around and we quietly walked around the neighborhood. I grabbed his hand, strongly lacing my fingers around his, squeezing, hoping my finger strength might convey all that I felt.
He broke the silence first. He just went to clear his head. I felt so silly for my hour of horror. As we walked he spoke words confirming how I felt. He labeled his feelings, the first time those words had been uttered out loud. Resolve Lord. No resolution or clear path but at least a step. It feels like a step in the right direction, what direction that is I don’t know.
You know Lord. Oh please, help me to love him fiercely, especially when it’s hard, when he’s hard. Help me to forgive as you’ve forgiven me. Help me to extend grace and to trust you, because I’m having a hard time trusting you have him.
I feel you working on us Lord, in the midst of this mess, this unknown illness you are working. We are on day three of our family vacation which has been a bit bristly. Our drive down found us in an argument. We ended up talking about kids which B said I resented him for not wanting them now. I told him I’m upset with the fact that no decisions for our future have been made. I feel like we are in constant limbo, just floating about.
This shut B down which infuriated me. We eventually, after what felt like the longest period of silence, started talking again. B shared how he’s feeling, like he’d rather be dead and for me to be with someone else. It’s hard to plan steps when you’d rather not be walking. It broke me. I’ve heard it before but it doesn’t get easier to hear. I don’t want to be with anyone else. I don’t want him to go away or to feel this way. I told him I would still pick him, even like this. That I still loved him and in fact love him more now than I ever have. I told him I was sorry for how things were and how I wished I could do something to make it better.
Jesus our life is hard and some days it seems completely insane but I still choose him. Please don’t take him now. Heal him. Heal his heart. Thank you for helping us fight fair and love each other well in our argument. That is an answer to prayer.
We are on vacation with my family, cruising along Assateague Island looking at the ponies and I can see it in his eyes, the disgust with life. He’s so done. Everyone around him is oblivious to his pain, his discomfort, the war raging inside of his flesh. They have all long forgotten his absence from lunch, but his belly is still grumbling, hurting from the hours of no food and constant activity. His eyes too, they show his lack of sleep and deep need for rest, not from work but from this, this illness.
Such a small thing smell, but it affects everything. As we carelessly breath in without notice, he notices every pungent breath for it smells disgusting and he can’t ever get away from it. Like the trash that needs taking out, or a bad smell hidden in the fridge. But it’s not in a room, it’s his life.
He has moments sometimes days even where he can smell normal, if you can call it normal when you are constantly hyper alert to your breath, trying hard to not trigger the smell. But they always find him, after talking too much or too loud, waking up in the morning, laughing or breathing in too forcibly.
This hyperawareness, this constant fatigue has caused other issues. They too remain hidden. My family cannot see. Deep inside he battles feelings that we skip across in our average ordinary lives. Feelings that weigh on him, pulling him further away from me, from life outside of his head. As we marvel at the ponies and coo at the foals, he just sits there, swaying with the waves of the water wishing strongly for the end. And no one notices, except me. Torn between two worlds, the one we share together and the one I share with everyone else.
I know that the Lord hears our prayers, I just can’t quite figure out why it’s not being answered yet. I know that the Lord is good but this, this doesn’t feel good. I know that the Lord never leaves us, but I desperately wish He would intervene. Lord heal him, break down these walls, take away the bad smells.
Oh Lord God you are good and you are speaking here to me now, in this place, on this day through the story of Jacob. Thank you Holy Spirit for opening my eyes and showing me my right state before you, low and needy, sinful.
Lord we’ve been struggling, I like Jacob calling out to change our circumstances, wondering where you are, if you are good because this doesn’t feel good. You’ve been showing me what faith is, trusting you at your word. You say you are good therefore you are. You say you never leave us, so therefore you haven’t. Just as you were silent in Jacob’s story, Lord I feel you’ve been silent with us, no seen miracle in B’s nose, though we’ve prayed. And here, the pastor today talked about God’s providential hand, the unseen hand that disciplines, shapes and corrects.
We’ve walked away from you in many ways allowing sin to creep in. It’s showed up in apathy, bitterness, envy, pride and discontentment. Sin has harden us and I see you using this sickness to soften our hearts. We’ve been wrestling to change it but you Lord who are good and work things out for good are using it to make us reliant on you, prayerful, more empathetic and loving. This hard circumstance is changing us to look more like you through our endurance.
I’m still praying Lord to see your hand of miracle, expecting your deliverance but I now see the work you are doing in our lives. Help me to see your hand in our lives.
I feel like I’m on a roller coaster with all these ups and downs. The insanity of our lives is making me unstable. We can have such great moments and in an instant it seems everything changes. Today it feels like our world has changed, like there’s no going back to before.
As I waited for Jedi to pee outside one last time before bed, I wondered if they neighbors noticed. Can they tell? We’re not bleeding, we don’t have marks but the weight must be visible to someone. Everything seems so hopeless. I wonder how we got to this place and if there is a way out. I feel the darkness creeping in again, like the light is never going to shine through.
If there is any good that came out of today it was that we talked and there was no hiding. Oh the things he feels, the darkness that he lives in, Lord I don’t know what to do or say. He feels like you're not listening to him, that you’ve hardened your heart towards him. He’s worn out and broken. Heal him. Let this somehow draw us closer to you. Help us to believe that you care, that we are not alone.
As I lay here finally finishing Elliot’s work, I am torn open by her words. Simple, yet profound, a fact often glanced over. God is God. I, in my sinful heart, have such an inflated view of myself and deflated view of you God. I, like Job, have cried out to you accusing you as wrong, deeming me as right. Where is my right?
Oh what do I stand to even doubt, let alone accuse the King of the Universe? Forgive me Father for I have gravely sinned. You have made all things and intricately know and love my husband far more than I could ever fathom. Help me to trust you in this.
Thank you Lord for the work of repentance in my husband and his walking in responsibility. Thank you for his kindness and gentleness towards me, something I have not felt for a long time. Thank you for his awareness towards you. I see parts of his old self coming back, of our old life. What a light amidst all of this darkness.
Thank you for the healing of his heart. Continue Lord.
I’m trying hard to cling to you Jesus. I’m not doing well. I feel the pull, I just want this to be done. But there is no done for us, not unless you intervene. This is our life. Today I was reminded of a verse in John. Every branch that does not bear fruit he takes away and every branch that does bear fruit he prunes, that it may bear more fruit.
Are we being pruned? Is this so we may bear more fruit? It’s painful to grow. A fruit tree needs pruned in order to grow, must we? I think the comfort in this is that you are ordaining it which means not only do you love us and care for us but you are not outside of this and ultimately this has a plan, a purpose. Oh Lord I so desperately want this to mean something. Suffering without meaning is hopeless but to suffer for something, well that’s something to stand on.
Make us loving and bold to walk in the steps you have for us. We need your guidance today, your hand of healing now. May this pruning have an end and his nose be healed.
Oh Lord the turns and hits from life I see and feel the ugliness of sin and in contrast the goodness of you Lord. Your word from Joseph today, “Fear not, for am I in the place of God?” has checked my heart, humbling me again like Job. God is God, I am not. Against you Oh Lord we have sinned. Longing to be in your place, to call the shots, distrusting your Word and your goodness. Forgive us our sins and help us to walk in obedience in the light. What was intended for evil you have made it good, like Joseph being sold into slavery and being head over Egypt to save nations.
I don’t know what good will come. Help us to trust you where we don’t see you and lean in where we can’t stand. Grow in my heart an understanding of your character. Like Joseph in prison we have no control. This sickness shapes our days and darkens our future. Only you God can deliver us from this. Please deliver us soon. Take away the affliction from my husband and help us to walk in faith in you.
We went to the neurologist today. Of course my biggest fear in all of this has been, “what if it’s a brain tumor?” I’m usually worst case scenario, but this isn’t an exaggerated fear, it could be the cause. The doctor thinks it’s unlikely that he has a tumor or that it has anything to do with his brain, but scheduled an MRI and EEG just to be sure.
It’s not like I want it to be a brain tumor, but it would be nice to know the cause, instead of this big ambiguous problem that doesn’t have an origin or end. The not knowing sucks. She said it’s likely we will never know what caused this whole smell distortion. She failed to mention anything about it ending. I was too afraid to ask.
This seems like an unknowable, unfixable problem. It’s sucking the life out of my husband and no one sees the urgency of this. If it was a tumor than maybe people would take it, take us more seriously and at least we’d have a plan of action to fix it. But it’s highly unlikely. Most likely we will never know, which is the most hopeless feeling in all of the world.
We feel alone and unknown, B most of all. I can see it on B’s face. The feeling of permanency, of living life like this is disheartening and discouraging. It’s a battle I can’t step into, it’s all happening inside of him and I have no control over any of it, neither of us do.
I’m trying to take comfort in the fact that even if we never know, even if the doctors never figure this out, it’s not outside of God’s understanding. It’s not outside of God’s healing.
I just wish He and I shared the same timeline. I’m praying over and over again for healing. Our friends and family are also praying for healing, that God would take this away and yet it remains. Like Paul and the thorn in his side I pray that God would use this sickness to bring himself glory but that one day soon He would miraculously take it away so we may boast of Him all the more.
Went to counseling. I don’t know how I feel. At first it felt good to talk to someone, to share everything. We sat down and I spilled, spewing our hurt and pain from the last years all over the guy sitting across from us. That’s what you’re supposed to do at counseling right? We shared about B’s mood swings, about our battle to find out what’s going on and nothing getting better, the opposite actually it just gets worse. We talked about how hard it is to handle something you can’t control and how alone we both feel.
He gave us some good insight. He talked about how anger is a secondary emotion. It’s like an iceberg. We can see the top, the anger, but it’s the bottom that causes the top to float above the water. I think B’s bottom is hopelessness. He’s angry because he feels hopeless, like this sickness has no end. I know there is hope in you Lord, but it does feel hopeless. Only you can take this pain away. Are you going to?
By the end of counseling, M suggested that we have separate sessions with different people. That means I signed up for counseling, all on my own. That’s the part I don’t know about. It felt fine for us to go to counseling but me? Oh Lord speak.
This morning while I was scrolling Instagram, putting off starting today your word spoke to me,
“MANY ARE THE PLANS IN THE MIND OF MAN, BUT IT IS THE PURPOSE OF THE LORD THAT WILL STAND.” PROVERBS 19:20
I wish I knew the plans that you had for me so I could walk in them. But I guess that wouldn’t be faith. I want so desperately for B to be healed. I want this season to be over. I want to have babies and write full time but everything seems hopeless, seems unlikely. Help me to see your purpose Lord, here today. Help me to cling to hope in you. All else will fail.
Oh Lord you are the God of Creation, you are the Author of Life not just at the beginning but all of our days. You have laid good words ahead of us to walk in. You know the number of our days, the matters of our heart. You are great and worthy or our praise and of our pondering, of our beholding.
Fix my eyes upon you so my mind might be renewed. Tether my heart to you Lord so I may not get lost in the darkness, in the lies, in the hopelessness. Help em to honor you as God and give you thanks always. You work for me, in me and through me Lord. Help me to believe this.
If I journaled everyday I’d see you working. There is light, there are good days. But it’s in my pain I find my pen and write it out. B is doing more around the house, the fog seems to lift and I feel less alone. We seem almost happy but the darkness never seems to go away. He left a water glass stain on the table which made me upset and my anger, angered him.
He feels dead inside. He’s convinced vacation with his family is going to be awful. I feel his darkness creeping over me too. I’m starting to believe the lies. It’s never going to change. It’s always going to be like this. We’re never going to get better. You’ll always feel like this. It’s a battle to believe the truth, but I feel like we are loosing.
How can anybody really know how we’re doing? If they really knew, if they saw our day to day what would they think? It feels like no one else is battling this darkness, these swings. I’m not sure we can hide how we are doing from his family when we are sharing the same house. How are they going to react? How will they see us?
The continually swinging is hard. But maybe tonight is just too late. Maybe we're just too tired. Maybe tomorrow will be better. Or maybe this is just how we are now.
Maddie called this morning. Probably purposeful on your part. She’s kind. Gracious to listen and handle our dark. It was good to talk with her. I feel a bit lighter, though I always do in the mornings. We dropped Jedi off with my parents and drove the long hours to the airport. B wasn’t able to eat food outside the airport because of his nose. I scarfed down Wendy’s in the parking lot while B rinsed out his nose for the billionth time. Of course our weird life was witnessed by workers headed to their car, Biggie Bags in hand. No one understands. How can they? There meals aren’t interrupted by bad tastes and smells. Their lives are not marked by this kind of invisible torture and pain.
We got to the airport and met up with his family. B disappeared for a time past the security check in. His mother asked where he had gone. I didn’t know, my usual response. Could she tell? Could she see the distance that separated me from B, or me from her? After awhile he came back and he was eating. The weight lifted a bit from my heart. His nose must have cleared. Thank you Lord.
We flew down to Florida and met up with his younger brother, made our way to the house we were renting and unpacked our things. B was able to join us for dinner, though my body tightened with every clicking second we waited for our food, worried the smells would come back, worried his dinner would be ruined, worried his family would see. They could see, at least something. I could tell as they looked at both of us with concerned faces. Kind, but concerned. He was able to eat dinner! Thank you Lord. This is the most encouraged I have felt in a long time. I pray for your grace to cover this week. I pray that you would give B time off from his sickness so he could enjoy his family and we might be able to enjoy each other. Thank you for the blessing of family and healing at least for today.
Today I watched B play in the ocean with his brother. I sat on the edge of the water watching as the waves bobbed his head up and down. Tears spilled onto my cheeks and I realized it was the first time in a long time I had seen him laugh and smile. I hadn’t really noticed before now how sad he’s looked or how heavy this has all been. Thank you Lord. Thank you for a good nose day, for laughter and smiles. It has been good to see B happy, carefree. Thank you for sustaining us through this season. I hope it’s a season.