I decided I should write a post about what my marriage has been like since having crazy headaches and migraines. I decided this a long time ago, when I realized our wedding anniversary was approaching (and today it’s here!). But when I actually do stop and reflect, I’m so overwhelmed with thoughts and emotions that I don’t know where to start and where to end. So this post is only snapshots, stories from a time in our life that has been…complicated. Too complicated for words. I wrote it over the past few weeks. Stringing it all together is an exercise left for you, dear blog reader.
The headaches began in August, they came on after a treatment for a completely unrelated condition. We started to notice that I was certainly feeling worse, not better, and something was going wrong. But we didn’t talk about it much. I gave up, and Cory fixed his sights on September, on our big Labor Day weekend camping trip in Yellowstone National Park with my parents. This had been in the works for over a year.
Then I started feeling worse and worse. I didn’t tell Cory, I didn’t want to pop his bubble. But as we waited, the trip drew nearer, and suddenly it was only a week away. Cory came home from work one night and found me lying on the couch. I told him we needed to talk about the trip. I told him we shouldn’t go, that we couldn’t go.
Cory started arguing with me, telling me we could make it work, telling me we had to make it work. I tried to argue back, but I was so tired that I felt incoherent.
So I cut him off and blurted out, “Cory, this road is longer than you think it is.”
He cried. I cried. We cancelled the camping trip.
And the road ended up being much longer than what I imagined.
I found a book at the library about being a young adult going through a chronic health condition. There was exactly one book on this topic, oddly enough. I ended up not liking the book very much, because it talked a lot about how to handle ER trips and hospital stays. What useless information, right?!
But the author mentioned a statistic, saying that 75% of marriages in which one partner has a chronic health condition end in divorce. I told Cory the statistic at dinner that night, and we agreed it sounded unbelievable.
The first time I was in the ER, Cory sat in a chair past the end of my bed and read a book as they ran a large variety of drugs through me. The bed was in the hallway, because this ER is always full. I asked Cory to come and hold my hand, but he had trouble sitting on my bed without blocking the way, and he almost sat on the IV in my arm, which was under the blanket. Frustrated, he went back to sitting in the chair, reading his book.
The following week, I needed to go to urgent care, on a weekday. He brought a Time magazine and started reading it in the waiting room, while I was getting pounded in the head again and again with an invisible hammer.
“I wish you’d distract me while I sit here in pain,” I said.
“How am I supposed to distract you?” he asked.
“I don’t know! Just read to me from your magazine.”
So he started reading me the featured article: the career of Kamala Harris.
I asked him to stop reading after about ten seconds. Silence suddenly seemed like an ok option.
The worst day of my entire time in the hospital, I know we both agree, was the second day. It was the first of what would be many times I was on the verge of getting discharged while still feeling terrible. I had actually signed the discharge paperwork already when it came: the worst migraine attack I’ve had, and also the worst I can imagine. It started with my head, it felt like my skull was bursting open. I grabbed my head and started moaning. Cory was in a chair beside me.
“Natalie, is your nose stuffy?” he asked. (He was curious to know if I was experiencing a cluster headache.)
“Does that really matter right now?” I snapped back.
Then it grew, and I felt like my entire body was on fire. Cory, from what I’m told, started running around the ER looking for a nurse, or a neurologist, or anyone, but there was no one to be found for a long time. At some point, maybe after he found the neurologist, Cory returned and was there next to me, on the left, and our friend on my right. They were both holding one of my hands to keep me from ripping my face off, which is something I never thought I’d need friends to help me with. Come to find out, friends are very multi-purpose!
Then Cory stroked my arm, and I screamed in pain. Even the smallest touch felt like burning.
“Don’t touch me!” I said, or screamed. It felt like screaming.
Cory took detailed notes of every drug they gave me in the hospital, and how it made me feel. The notes grew longer and longer as doctors tried more and more medications. I stopped caring, or maybe I stopped wanting to have all of my pain meticulously recorded in a little black book.
One of these medications was a strong migraine drug…I remember it was pink, just another pill to swallow. But that pill made me sick for three days. On the fourth day, I asked Cory what it was called.
“I don’t know, Natalie. I didn’t write it down.”
“What? Why didn’t you write it down?!” I snapped back in anger.
“You told me not to. You got mad at me for taking notes. Don’t you remember? And now you’re getting mad that I didn’t take notes!” Cory said, exasperated. He looked to be at his wit’s end.
And then I remembered, I had gotten mad at him for taking notes. But I was still angry, and I didn’t apologize.
After I came back home from the hospital, we could barely talk about anything. We argued so much, and we cried so often, but it felt like no progress all the same. It felt strange, being unable to connect in the simplest of ways, as if a wide canyon had grown straight down the middle of our life.
I went to the ER shortly after returning from the hospital. We sat in the waiting room for eight hours because flu season was in full swing and headaches are a less serious condition, technically. They put me in the hallway again, but a less busy one. Cory sat on the bed with me, and he held my hand. When they decided to keep me through the night, I told Cory to go home. But he waited until I was moved to a quieter area, and then he kept waiting and waiting. He said he’d wait until I fell asleep. But I insisted he go home, it was already 1 am and I wanted at least one of us to sleep that night. He’d surely be back early in the morning, though he never said so. He didn’t have to say so for me to know.
Cory was the one who convinced me to start this blog. I kept throwing the idea around, but I wasn’t sure if it was worth the effort. He said I should, he said I needed it and that’s all that matters. But I still feel so silly sometimes, writing about an invisible problem.
What if people don’t resonate with what I say?
What if no one understands?
Who reads a blog about headaches anyway?
It turns out that doctors are very hesitant to give me specific diagnoses. The only one I’ve gotten so far is something that basically means “a really long migraine.” But Cory looked over the doctors’ notes and researched my symptoms until he found all possible things I could have, and he told me about each of them and what procedures and drugs we should try next. It doesn’t matter if I have all of the conditions he’s found, what matters is he gave me labels for my pain. Labels are tangible to the mind, they make my pain feel validated, legitimate… understood.
He also researches every drug I am prescribed to make sure it’s safe. I wonder how many hours of anxiety Cory has saved me by keeping me away from the web forums and Facebook posts full of horror stories and hypotheses.
I had a migraine last weekend. It started on Saturday morning, on the first weekend we were back from visiting my family. I barely moved from bed for almost three days, and I missed church and opportunities to see friends along with that. After Cory came home from church on Sunday, he laid in the dark in our bedroom with me and we talked for hours. I don’t remember what we talked about…just whatever was on my mind, I guess. When I expressed my surprise that Cory was spending so long talking with me about nothing (in the dark, without falling asleep), he said,
“You’ve been alone all day. I want to keep you company.”
As I write this paragraph, Cory is at the grocery store. He will be smoking ribs tomorrow, and chicken for me because I can’t eat pork. The refrigerator is empty, so he is also getting all of the groceries for the rest of the week. We went through the list together before he left to be sure he gets exactly what I want, what I would usually get for us. In exchange, I’m to find someone to invite over for dinner tomorrow because Cory loves sharing ribs with friends- they’re best if eaten fresh. I am doing my part in my pajamas, which I wore until 10:30 this morning and then changed back into before we even ate dinner. Cory is doing his part after getting home from the office, picking up the food that I ordered but couldn’t get while I was out because I forgot my wallet, eating it even though I accidentally ordered him something with mushrooms and zucchini in it (his least favorite foods), and playing with the dog because I was too tired from my day.
It’s our sixth wedding anniversary today, and I took on planning our celebratory date night this year. I’ve heard of a good pizza place near our house, I planned for us to walk there together. Pizza has become one of our dietary staples lately, as we’re both constantly in the mood for it. And I worry a little less now than I did before about how often we eat pizza for dinner.
But we went to the ER yesterday, I had another migraine flare that wouldn’t end. So the dinner plans may need adjusting, again. We live in a constant state of planning with last minute monkey wrenches in mind. But we never stop planning, never stop hoping that this season will end tomorrow. And the ER trip, we both agreed, was the easiest one we’ve had. We were a good team. Maybe we’re getting the hang of it.
In addition to our anniversary pizza dinner, or whatever we eat tonight, I made a playlist for us to have a dance party in the living room. I know that’s not much of a plan, but it’s something, and it’s also going to be the most exciting thing I’ve done for days. And our dog, Donut, actually loves dancing, so it’s sure to be all three of us.
The playlist is full of songs we’ve enjoyed throughout our relationship, the weirdest one being “The Gambler” by Kenny Rogers.
And I put our first dance song on there, too. It’s called “Never Once” by Matt Redman.
The chorus goes like this:
Never once did we ever walk alone
Never once did you leave us on our own
You are faithful, God you are a faithful
Every step, we are breathing in your grace
Evermore, we’ll be breathing out your praise
You are faithful God, you are faithful.