Well

February 14, 2021

I’m relaxed. In a comfy chair, with a blanket over my legs, the lights dim and my eyes closed. It’s quiet, save for the heater blowing softly from the corner of the room. There’s a diffuser going somewhere to my left and it’s peaceful.

I’m not at home, no, I’m in the neurologist’s office having an EEG done. My cranium has been measured and marked with a grease pen, blue “x”s  written across my scalp, soon covered by an adhesive paste connecting electrodes to my head and collarbones. They had to avoid the scar running down the back of my head from my brain surgery, which is kind of nice because now I can lay back without having anything between my head and the chair. I’m glad I didn’t put on makeup or fix my hair before I came in because I surely will have to go back and shower before running into work. I’ve got about 22 minutes remaining in the test and I lie back relaxed, my only job being to keep my eyes closed, which is not a difficult job after less than six hours of sleep last night (darn X-Files cliffhanger). So I’m relaxed, on the edge of dozing off when I have a thought.

I want this test to come back normal.

This morning I’m having the EEG done as well as having an ultrasound of my Carotid artery to see if there’s an unidentified, underlying cause of my vertigo and smattering of other symptoms. And I can’t help but think,

I want these tests to come back normal.

I think that’s the first time I’ve ever thought that.

Every other time I’ve been going through tests and the medical process, there’s been something wrong and I knew there was something wrong, so I wanted the tests to show that. I wanted, so desperately, to be validated by the tests. If there is something wrong beyond my skull pressing my brain down and crushing my spine, then for sure, I want to know, but my skull isn’t big enough for my brain, gravity pulls my brain down, and my spine is crushed as a result. Brain surgery helped, for a time, and saved my life, but it was a treatment, not a cure. I’m pretty sure a smooshed brain and a crushed spine are going to result in some vertigo, migraines, nerve-tingling, and other difficulties every now and then.

So I want these tests to come back normal. I want to be able to continue caring for my body, listening to my body, getting checkups when I need them, and advocating for my body, but I also want to accept that my body isn’t going to be symptom-free or painless and I don’t have to be in a mode of impending crisis at every given moment.

I want to be well.

I moved almost a year ago and before I had COVID for six weeks, I had established care with an endocrinologist in Montgomery so we could check up on the tumor. I gave her the scan from the NIH, the results from my tests at the endocrinologist in DC, told her about the botched CT scan and told her I wanted to do the due diligence I needed to do for my body.

She looked everything over, talked with me, and told me that she doesn’t think I have the tumor anymore. Or at the very least, if I do, that it’s benign. She said I wouldn’t have been able to lose twenty pounds through diet and exercise if it was still overproducing cortisol and I wouldn’t have been able to bring down my blood sugar levels from pre-diabetic levels if it was still overproducing cortisol and the stretch marks on my thighs wouldn’t have just disappeared and it’s kind of weird that they have. If it was cancerous, we probably would have seen the signs of that by now, and if it was over-producing adrenaline, I would have been dead by now, so she thinks, through nonmedical intervention and inexplicable reasons, my tumor might have resolved itself.

But we’re going to re-conduct all of the tests just to be sure.

I’ve got the CT scan in nine days, the blood work in seven, and I’m not nervous. I think she might be right. I want her to be right.

Because I want to be well.

A year and a half ago, when it was time to re-conduct the tests with my DC endocrinologist, I didn’t want to be well. I wanted the tests to show something. To show the cortisol, to show something. I didn’t want to be told I was well because I didn’t want to be well. Because I didn’t know how to be well.

I didn’t know how to be anything other than life-threateningly ill. And it was frightening to be my body’s definition of well. Because of the nature of my body, the Chiari, the B12, I’ll never be society’s definition of healthy and well, but I can be my body’s definition of healthy and well. Except that a year and a half ago, a year ago, six months ago even, I couldn’t be. I was terrified to be.

Because who am I if I’m not sick?

I was watching the tv show Arrow the other day (and there’s a side note on the appeal of superheroes to people with chronic and serious illness, but it’s not today’s side note), and one of this season’s villains, posing as a good guy, says something to the effect that most of us will face a crucible of suffering at some point. There are generally two responses, to be crushed by it, or to be strengthened. But there’s a third response, he reveals, that some people are in the crucible for so long that they decide to remain in it, because the crucible, the suffering, is now all they know.

I don’t want to choose the crucible.

I want to let myself be well.

I’ve been in the medical process for over six years now. I’ve had more doctors, more tests, more bills, more procedures and surgeries, more medications, more diagnoses, more pain than I’d ever thought possible, than I could ever dream or imagine. I look at my life in two parts, before brain surgery, and after brain surgery. My medical complexities have defined my life.  

I think they’ve become my identity too.  

I’m sad to acknowledge it, embarrassed to admit it. I’ve become my crucible. I’ve allowed myself to be reduced to one aspect of my life, of myself. Worse yet, I wanted to be sick more than I wanted to be well.

Because I didn’t know how to be well. I didn’t know where to begin, what to do, and I didn’t want to lose it all again the next time I am having a life-threatening new illness or iteration of an old illness. If I choose not to be well, at least it feels like a choice. At least I feel like I have some sort of autonomy or control in the matter. And that’s been more important to me than being well.

But I don’t want it to be any longer. 

Through grace and guidance, my identity is rooted firmly where it needs to be, in the overwhelming, all-encompassing, overpowering love of God and sacrifice of Christ. I understand my worth and value are not dependent on my body, my efforts, or anything I can produce or provide. Illness is part of my life, but it’s no longer all of my life or the determination of my worth and value to myself or others or God.

And I’ve started to live. I took up shooting and started going to ballroom dance lessons. I am volunteering with a Girl Scout troop, have visited friends, and am working on creative projects. I commissioned a piece of art and refinished a couple of pieces of furniture. I am exercising twenty minutes a day, taking care of my body. My thoughts to and about myself are kinder. My focus is no longer on perfection or people-pleasing, my life feels full and I’ve searched for contentment and found it.

And I’m not afraid of all of this being taken from me or stripped away from me if and when I face another illness or procedure that confines me to a bed or takes away my freedom or ability. Instead, I value it all the more right now.

I’m living in Montgomery, Alabama with my parents and brother right now. I committed to this job for three years, I’m one year in, and I have a feeling God won’t keep me here for long after those three years are up, and they’re going fast.

What I have right now is so special. I love and like my family and we’re not all going to be together like this for long or maybe ever again in this way. My brother has a girlfriend, and it looks like they’ll be married before long. Dixon’s music career is probably going to continue along the trajectory it’s on and he’ll be in Nashville or touring. I might meet someone, or at the very least will probably move after these next two years are up, and my parents won’t live forever. We won’t be like this for long. So when my dad wants to play a game of Bonanza or my mom wants to watch a movie or my brother wants to come into my room and talk right as I’m getting ready to go to sleep, I’ll put off extra evening work to play cards, push off a tv show I wanted to watch to sit on the couch for the movie and sacrifice the sleep for this hour talking with my brother.

Everything is fleeting, nothing is permanent, so I give myself permission to live fully in the moment I’m in right now. I treasure this time, and it’s being stored up in my heart so that when this time is over, and if I go through a period of more present illness, without what I have now, I’ll have such a wonderful bank of memories to look back on. I’ll use that bank as the reminder and motivation that life can be more. I can be more than the illness I have, and I can build and discover the life of the season after next. I don’t have to be my illness. I can be fully me.

It’s like a good glass of wine. You’ll never have the same glass of wine twice, even if you have two glasses from the same bottle. Once you open a bottle of wine, the oxygen starts to mix with the wine and it aerates. So if you have a glass of wine from a freshly open bottle and then you go back an hour later to have another glass, the oxygen will have changed the taste and it won’t taste just the first glass did.

If you have another bottle from that exact same vineyard and exact same year and you open it the next day, that first glass won’t taste exactly like it did yesterday, because the food you ate for lunch influences the taste of the glass of wine you have with dinner. You can never have the exact same glass of wine twice. So, what then? Do you just stop trying glasses of wine? No! When you have a glass of wine that tastes excellent, you enjoy it to the very last drop, because you know that you won’t have it again. You keep that memory of that glass of wine with you as you go on trying other glasses of wine and you tell the people you’re with about that glass of wine. When you have a glass before you that isn’t as great as you hoped or expected, you know that you’ll have a great glass of wine again. So it’s okay, that’s just the nature of wine. 

I can remember the great glasses of wine, literally. The Grenache over a steak dinner with Kandace at St. Anslem one of my last weekends in DC, the Malbec with Bethany putting up shelves and creating a reading corner in our shared rowhome, the glass of Bordeaux with my family on my twenty-sixth birthday over a Montgomery award-winning serving of bread pudding, topped with pecans, served in a warm skillet.

I’ve stopped chasing great glasses of wine and now simply focus on the glass before me, enjoying it or knowing I’ll enjoy one again soon.

I’m storing up a reserve of great memories to live in when a hospital bed and fluorescent lights are all I can see and then to look forward to knowing that I don’t have to live in the crucible forever. I don’t have to be only my illnesses.

Now, I can no longer drink wine at all because I’m on anti-depressants. Because my depression is caused by my malformation and my malformation will never be resolved, I’ll probably never be off of anti-depressants, so I might not ever be able to have another drink again. 

And that’s okay. I had some great glasses of wine, and I enjoyed the opportunities to try fun drinks at cool places with great people. I have wonderful memories of that time of my life. And since Matthew 26:29 says that one day I’ll drink wine with Christ in God’s kingdom, I know I’ll drink wine again, and it will be in heaven, with my savior. I’m betting that will be a pretty phenomenal glass of wine and worth the few years without wine now, even if a few years end up being something more like eighty years.

I want to be well. I want to let myself be well.

So when I get the call that the EEG and the ultrasound came back normal, I’m happy. Another couple of weeks and I’ll know about the tumor. And for the first time, I’m not seeking validation from these tests, and I’m not seeking illness over wellness. I’m seeking accuracy and truth and treasuring the moment before me, regardless of what moment is coming next, and I’m clicking play on another episode of Arrow.

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