It's Okay To Not Be Okay

I broke down last night.

As the appointment with the Wash U oncologists loomed, I was carrying this sense of impending doom in my body. Up to now, once Kris was released from wearing the back brace all the time, we were living in a bubble of sorts. We were just going to treatment appointments, Kris was faithfully taking his meds, and things had some semblance of "normal" for a time. I had certain expectations of this appointment, but had only thought about it in terms of the details they would be providing about the bone marrow transplant: when it would happen, what it would look like, whether Kris would be in isolation, what the risk of infection was, etc...

I didn't expect that appointment to turn my world upside down.
That's the thing with expectations--things do not always go the way we think they will. As hard as we may try to NOT have expectations, I think we just instinctively do this. We believe things one way and don't really think about another possibility, until we are punched in the gut with one. That's how it felt on Tuesday. Like the rug was pulled from under us, shattering our illusion that Multiple Myeloma is not usually fatal.

I felt strong all day on Tuesday, and I saw God show up in tiny ways, again and again and again. I felt truly calm even with the truth we learned, and had a peace that cannot be explained. Anyone who knew me 10, 5, or even 2 years ago would (and have been) surprised at the peace that has been evident in me all throughout this. It is only from God. I spent all of 2023 chasing after peace and fighting fear at a deeper level. It brought me to a place where I could claim victory and say (and truly believe) that NO MATTER WHAT I will be okay. I have clung to that, repeated that to myself and others, and cherished this new level of peace God has given me.

The peace that cannot be understood, while ever-present with me now, doesn't suddenly stop my ability to FEEL. Our feelings just are. They are present in our bodies, and they come, and they go. It is their nature. Sometimes, though, we get stuck in our feelings, and that is a dangerous place to stay. I am learning the art of feeling my feelings, grieving what I need to grieve, and then releasing those feelings into the hands of a God who has never let me go.

So, it's not really surprising to me what happened last night.
Do you ever just feel like picking a fight? The tension was building in my body, and because my mind felt sound, it was very disorienting. I didn't understand what was happening or why I was so agitated with Kris. In several moments over the last two days, I have been short with him. I can see the pain and physical exhaustion written all over his face and it throws me off balance. Especially when he says things like "I'm just tired." or "My pain isn't that bad." I have trouble believing him, because what I SEE and what he is saying are two completely different things. It makes me fearful that he is falling back into his old pattern of simply shoving his feelings down and not being present with what is happening in his body. But do I tell him this? No. Because at that moment, I'm stuck in the past with a younger, terrified version of myself who is accustomed to hearing devastating confessions when her husband's actions don't line up with his words. And while I know in my mind this present situation is not related to his past addiction, I get stuck back there emotionally when he's tired especially, because it creates this distance between us that I have trouble navigating. It leaves me feeling off-balance, which in turn increases the sarcastic tone in my voice, its raised volume, or my complete shutdown in communication with Kris.

This entire cancer journey has been filled with emotional flashbacks for me, because Kris with cancer is a different Kris. He's run down often, he is in pain much of the time, and he simply isn't able to do many of the things he did before. While I can acknowledge that he is NOT currently acting out, it doesn't change how my body reacts when I am stuck in an emotional flashback. But I didn't immediately identify it last night. Instead, I felt incredibly small, dismissed, and unseen by my husband. I just kept blurting out any thought that came to mind. The problem was much of it was not coherent or expressed in a way that Kris could even enter into. It was chaotic in my mind and it came out chaotically and left Kris feeling confused and at a loss on how to move forward.

I knew it wasn't his fault. I knew that I was experiencing a complete overwhelm of sensations, physically and emotionally, but I was stuck and didn't know how to speak it. And then came my old friend Shame with lies like this: "He has cancer. How could you possibly be making this about you? You don't get to feel anything or experience pain because HE is the one who needs to do that. You had your time. I can't believe you are treating him like this when he's sick and needs to get some rest. What a horrible, selfish wife you are. And not just a bad wife. A bad mom. A bad friend. A bad Christian. Look at you, shaking and crying and making it all about you. You're having a panic attack just to pull the attention back on you. What a pitiful excuse of a human you are. You aren't allowed to feel anything. You need to shut up and let him go to bed. You're so stupid."

And I'm going to be honest. I got stuck there for a while. I even believed the lies temporarily, where in less stressful times I can call them out and renounce them. It is so easy to fall back into the habit of just ingesting and believing the lies, especially in times of deep trouble. I'm a baby still when it comes to denouncing the lies and declaring the truth of who I am, because of who God is. Last night, I was truly stuck, frozen, unable to move.
And as the old familiar panic attack washed over my body, the lies were heavy in my mind and I couldn't talk. I couldn't explain to Kris that I was having trouble believing the truth that I know. The lies were SO loud it was all I could hear. I was having a very real moment of terror and I couldn't even understand what it was rooted in. The entire time, leading up to the panic attack, I kept searching my brain trying to understand WHAT was happening. Why was I so edgy? Why was I attacking my partner who has loved me at my worst? What experience in my past was causing this amount of disruption in me? And unlike my past experience when I am curious instead of fearful about what is going on in my mind and body, I couldn't come up with anything, which left me feeling even more unstable.

All I knew is that the entire thing spiraled out because I told Kris that I didn't feel like he really cared when I talked about how hard it has been these last couple of weeks especially dealing with what are likely very real symptoms of perimenopause. He has seemed disengaged, and has barely said anything at all in response to me when I would share. I felt alone, like I was drowning and he, who represents safety for me, was not willing to throw me a lifeline. I'm not saying it is an accurate picture of his heart. I KNOW that it is not who he is. It never has been. Time and time again he has thrown me a lifeline and held me when my body was shaking or my fear was too big. There's no reason for me to think that. And yet, it is the reality of what was happening in my brain.

Suddenly, somehow in the midst of it all, a small piece of the puzzle became clear. The reason I am SO disrupted about experiencing menopausal symptoms is because I have lived with a very real fear inside of me regarding this very day. For many years, that fear ran rampant, unchecked. When I was 19 years old with a blood clot, I was told that I could never take estrogen or have hormone replacement therapy down the road when menopause hits. It was traumatic news to hear, and not knowing what I know now, I buried it deep in my mind and my body. It would come up from time to time, and I would feel the fear of it, and then I would shove it down again. What was the point in worrying about something that was decades away? But I didn't realize that each time I took it out and looked at it, and then put it back, I was giving that fear room to ferment and grow. And it grew silently and metastasized to the point that now that I am smack dab in the middle of a body that is doing things I cannot control and cannot treat with HRT, so of course I am going to be off balance. Of course I am going to panic.

As soon as I realized this, my PTSD freeze response kicked in and I stayed stuck there for a long time. The freeze part was evident in the fact that I simply could not figure out how to TELL Kris about it. I didn't know how to form the words. It reminded me of all the times when we were first married at 19 and we would have conflict, and I didn't know how to have a voice so I would LITERALLY go and hide in our closet. Kris would come and find me, he would sit with me, and he would just wait patiently. He would try to coax me to open up and talk to him. I'm not sure he realized what he was unleashing by giving me a voice to speak about all of the painful things I carried inside. Perhaps you can't see me this way, because I am now so very open about everything I think and feel. But there was a time when I could sit for hours, unable to speak about the really hard things. It was so crazy last night, to feel like I was 19 again, sitting in that closet, unable to articulate the pain I was feeling.

Feeling off balance from that, while Kris stood there unable to find words to say to enter into the moment with me, I went to the bedroom and left him in the family room. After a couple of minutes, he sent me a chat and we had a brief exchange. But I was still highly agitated and desperate to not be abandoned. I'm not a nice person in the face of abandonment. All the things that I try to die daily to rise up and I become someone you wouldn't recognize. I imagine this is just part of being human for all of us, so I don't think my experience is unique, and I’m not going to shame myself into defeat.

Because of miscommunication through chat, Kris came back to the bedroom to talk. I could see it all over his face and in his body language--he simply did not know how to come alongside me at that moment. He didn't know what I needed. I didn't know what I needed. And as he looked at me with true confusion, I desperately began searching my mind to understand what I was feeling. I became frantic as I searched for the younger version of myself that I can usually find in these moments. I couldn't find her and it terrified me. She was gone and I didn't know where she was. How could I sit with her and protect her from the onslaught if I couldn't find her? It literally filled me with terror to not know where she was.

As the panic attack fully settled in, by this point, Kris was laying in bed beside me. I couldn't speak, but I wanted to cry out, "I can't find her! I don't know where she is but she needs me." I wanted to tell my husband why I was panicking, but I simply could not utter the words. All I could do was lay there in panic, waiting for it to pass. While it was overwhelming and out of my control, I knew deep in my soul that it WOULD pass. So I just laid there, waiting, as I held my breath and my body trembled.

At some point, Kris turned on some music. He didn't know that the very song he turned on first (Oceans-Where Feet May Fail by Hillsong) was one that I had heard early that morning and it brought me great comfort then. So to hear it again in that moment, I KNEW God saw me. I KNEW that my husband saw me. My body was still in a full on panic attack, but I had clarity in my mind.

What God did next blew my mind. It didn't surprise me, but it wrecked me in the best possible way. Song after song for nearly an hour came on. It wasn't the usual songs. Every song was one I knew and loved, but several of them were strategically placed in line to play, something only God could have done, to reveal to me the truth I was desperately chasing after. I needed to understand what was driving the panic attack, and the events that led up to it. I couldn't figure it out on my own, except to know that somehow everything we had experienced over the last two days was just a LOT. The panic attack actually made sense to me, because I had been walking in such strength and peace (the Lord's, not my own), without having actually taken time to FEEL what my body needed to, specifically concerning Kris’ life expectancy.

What you do not feel WILL arise somewhere else. If you do not feel it, express it, and grieve whatever "it" is, it will stay stuck in your body. I think that's why I had the panic attack. Because while I took time Tuesday afternoon to rest, it looked more like just laying there, unable to move or speak or think or feel. I was still in shock. We carried on with our day, and spent the evening Tuesday night having pizza with our kids, my mother-in-law, my sister and her husband, and two of our bonus kids. We spent at least an hour sitting in a circle in our family room, being completely transparent with our family about what we were facing and how we planned to walk through it. We laughed and cried and loved on each other. That night is cemented in my mind, a memory that I think our family will cherish as the years roll by.

Yesterday, I hit a wall at work (figuratively) at about 10:30AM. A deep exhaustion settled into my bones, and my coworkers could see it all over my face. I went home to finish my shift and trudged through the rest of the day. My sister and a couple friends came over to craft in the afternoon and it was relaxing and needed, but around 6PM, I hit another wall. I simply couldn't move. I just sat in my chair, talking to everyone, but unable to do anything else. Once our friends left, Kris and I did our devotions and watched a show together.

And then it went downhill from there.

About an hour before it began, I told Kris I thought I might have a panic attack. His response would normally have been tender and compassionate. But last night, because we were in the middle of conflict, he just sat there saying nothing. I felt like I had to run. Like I had to get away and hide from all of it. It must have been so confusing for him to see me like this last night. He was completely at a loss for how to come alongside me. I knew that I wasn't making any sense. I knew that his hands were tied, because I didn't even know what was happening or what I needed.

I could end it there and just tell you that in the end we made up and all was well. But if I just did that, then I couldn't share all the ways in which God showed up last night, and how HE revealed to me what was happening, since neither one of us had any clue. The perimenopause conversation may have been the catalyst, but that isn't what was really upsetting me. It took three songs, strategically placed in order, for God to reveal to my heart what I was wrestling with.

Oceans by Hillsong was the first and that song helped my body to calm. Literally, halfway through, the shaking in my body suddenly stopped. I was able to take small breaths. The panic and shaking would come and go over the next few songs, but miraculously in the middle of Oceans, my body suddenly stopped shaking entirely and I was able to lay my arms down at my side.

You call me out upon the waters | The great unknown where feet may fail | And there I find You in the mystery | In oceans deep my faith will stand | And I will call upon Your name | And keep my eyes above the waves | When oceans rise | My soul will rest in Your embrace | For I am Yours and You are mine | Your grace abounds in deepest waters | Your sovereign hand will be my guide | Where feet may fail and fear surrounds me | You’ve never failed and You won’t start now

Lead Me by Santus Real came on next. And I remember thinking, what an odd song. But as I listened to the first verse, and it echoed exactly how I was feeling in that moment, I knew it was from God.

I look around and see my beautiful life | Almost perfect from the outside | In picture frame, I see my beautiful wife | Always smiling but on the inside | Oh I can hear her saying | Lead me with strong hands | Stand up when I can't | Don't leave me hungry for love | Chasing dreams but what about us? | Show me you're willing to fight | That I'm still the love of your life | I know we call this our home | But I still feel alone.

As that verse played, Kris took my hand. I knew with everything in me that he was communicating to me that he saw me. That he was not going to leave me to face this alone. That he was going to stand up and fight for me, in that moment, because I couldn't. As the song continued, Kris tenderly stroked the top of my head.
The next song to play was Praise You In The Storm by Casting Crowns. Suddenly, I remembered hearing this song when my friend Shawn lost his wife and two of his boys suddenly back in 2005. It has always held a special place in my heart and I prayed that song so many times over Shawn in those early months of deep grief and loss he had to walk through.

I was sure by now | God, You would have reached down | And wiped our tears away | Stepped in and saved the day | And once again | I say, 'Amen' and it's still rainin' | But as the thunder rolls | I barely hear Your whisper through the rain | 'I'm with you' | And as Your mercy fails | I'll raise my hands and praise the God who gives | And takes away

My sobbing became loud and ugly and I realized that I needed to cry, to weep, to sob, to let all of it wash over me and FEEL it. As the chorus played, I raised my hand up toward the ceiling. In the dark, laying in our bed, I began to worship.

I'll praise You in this storm | And I will lift my hands | For You are who You are | No matter where I am | And every tear I've cried | You hold in Your hand | You never left my side | And though my heart is torn | I will praise You in this storm

Another old song came on after that, Cry Out To Jesus by Third Day. My sobbing renewed in earnest when I heard the first notes, as this song is one I have gone back to time and time again. I remember sending it to my grandma after my grandpa died. I didn't expect it to come on last night and I didn't expect to be so deeply sorrowful through it, but it was in this song that I realized exactly what had prompted everything that transpired last night. Two parts in particular hit home so much harder than I thought they would or should, but then it just made sense.

To everyone who's lost someone they love | Long before it was their time | You feel like the days you had were not enough | When you said goodbye

AND

To the widow who suffers from being alone

That last one made me think of my grandma, and my friend Cynthia who is a widow and has been by my side every step of this cancer journey. As this song played, I still had my right hand lifted in the air in worship. Kris lifted my left hand that was intertwined with his and we lay there, hands raised, silently praising God for who he is, for what he has given us, for the work he has done in each of us, and for bringing us to this very moment.

The song ended and I finally found the first words to speak to Kris in over an hour, as understanding dawned and I knew what I was feeling. I sobbed out, "I don't want you to die. I know that I will be okay if you do, but I don't want you to." He held me tight, whispered reassurances over me, kissed my forehead, stroked my hair, and just allowed me to weep.

I knew I was not going to let the enemy bind me in fear, but in that moment, I WAS afraid. It was real and it was raw and it is okay that I felt it. And as I realized this, I understood something else. Remember how I couldn't find the younger version of me to comfort? I suddenly knew why I couldn't find her. Because she wasn't the one crying out to be seen and held and comforted. It was ME. The present, 45 year old me, needed to be ministered to and comforted.

We didn't talk. We just kept listening to music and in each song that came on, God spoke and moved, He loved, He saw, He comforted, He encouraged, and He filled us up. Promises by Maverick City held these truths:

Time and time again | You have proven | You'll do just what you said | Though the storms may come and the winds may blow | I'll remain steadfast | And let my heart learn, when You speak a word | It will come to pass |

AND

I put my faith in Jesus | My anchor to the ground | My hope and firm foundation | He'll never let me down

AND

Yes I'll still bless You | In the middle of the storm, in the middle of my trial | I'll still bless You

How He Loves by David Crowder Band played next and was the perfect reminder of how deeply loved we are.

And we are His portion and He is our prize | Drawn to redemption by the grace in His eyes | If his grace is an ocean, we're all sinking | And heaven meets earth like an unforeseen kiss | And my heart turns violently inside of my chest | I don't have time to maintain these regrets | When I think about the way | He loves us | Oh how he loves us

That song was followed by Gratitude by Brandon Lake and we both just laid together, listening and echoing every word it says.

All my words fall short | I've got nothing new | How could I express | All my gratitude | I could sing these songs | As I often do | But every song must end | And you never do | So I throw up my hands | And praise You again and again | 'Cause all that I have is a hallelujah

What a beautiful night of worship Kris and I experienced. Like Tuesday night, surrounded by family as we faced our battle head on, that memory is going to be treasured as long as I have breath.

Cynthia sent me a text this morning telling me it was okay to not be okay. I shared that with Kris over chat and he said, “It's definitely okay to not be okay. I'm sure it will come in waves. I love you. I'm here with you now. He is with you always. I believe we still have lots of new memories to make together.”

We chatted a little more about last night, specifically when he lifted my other arm up. He said, “When I lifted your hand, I was imagining Moses. I felt like my role last night was that of Aaron or Hurr.” -- if you don't know the story, the Israelites were in battle and as long as Moses held his hands up, they had victory over their enemies. A person can get weary lifting their arms for so long. And Moses did. So Aaron and Hurr came alongside him and literally held his arms up as the battle raged on.

I replied, “I imagined that too and have told several people that I have had that kind of support throughout this journey, so I knew when you did it that is what it was.”

I told him I didn’t know if he could see that my other hand was up and he said, “I did know your other hand was raised. And the song was saying 'and I will lift my hands and praise you through the storm.' So I was joining you in that and supporting you.”

God is so, so kind. He has not, nor will He ever, abandon me.