Arrival: Life In The Negative Space

I cried in the car today. 

If you read my last post you know some of the symptoms I was experiencing as a result of my new panacea medicine. 

This got worse this morning, my scar hurt like it did when I was in recovery. I had aches all over my body and the chills. I could barely lift my head from my pillow from within the prison of my bed-ridden existence.

The reason I cried is because of the negative space, the unknown.

My psychiatrist wrote off my side-effects as not being caused by this medicine. (he also wouldn't let me get a picc line and I have horrible veins but my mom was driving me so I didn't want to cry).

But today, after more blood draws at my primary care, the doctor said he thinks that it's all due to the new medicines I'm on and he's also sending out my lithium levels so we'll see there.

Negative space: in art, the part that isn't the actual picture but sort gives the positive space room to land on. Great artists are just as meticulous about the space they use and the space they don't use because negative space can tell the observer just as ,much as positive space.

Have you ever seen or read Arrival? if you haven't stop reading here and go watch it. Towards the end, when things are getting down to the wire, the differing creatures (I refuse to call them aliens because cultural relativism, people!). So the differing creatures sent one last encrypted, highly intelligent message. The linguist and the physicist couldn't figure out the cypher. Then, with gallantry, the physicist figures out that the message was hidden in the negative space of the 3-D message: time, it was about time. but that's beside the point. Here's the real point: you can communicate life-saving messages through negative space.

So when I feel I like death is winning the fight because, at least in this case, no one can tell me what's wrong and no survivor of a rare cancer wants to hear that, I remember the negative space.

God doesn't always respond right away or at all the way you want him to, but he always answers. Often times in the negative spaces of your life, your community.

As I turned-on the ignition my care in front of patient first and started crying. And soon I felt another person in the car. He was crying too. It was Jesus. 

In between the positive spaces of two highly trained doctors into whom I have vested all my hope, two doctors who couldn't tell me exactly what's wrong or if the cancer's back, in the negative space, I encountered the God Who Sees Me (shout out, Hagar!).

Knowing that you have a God the suffered for you 2 millennia before you were born and makes petitions for us in heaven, and, yes, suffers with us now, doesn't take the pain away or mitigate the reality of a fractured existence on this long sojourn home. But it makes us look back at the pristine Garden and forward to the Heavenly Jerusalem. And I think what he wants us to know is that he is just so very with us. In the positive, useful stages, and in the negative, useful spaces. Emmanuel, God with us, our very present help.

Don't miss him in the fallow seasons of your life. He may not visit us with the angel of the lord like Hagar in her negative spaces (literal deserts), but he will be there. 

I can hear the words of Lily Potter, saying to her bereaved son, "we never left."

God's not afraid of my (and your) circumstances or everybody's seeming ignorance as to what's wrong with me, be assured: he's never left.

Today was rough

I woke up at 4:45am and tried to walk down the stairs to go the restroom. But I couldn't keep my balance so I sat there in silence for fifteen minutes til my dad came out of his room to cook himself breakfast. I wanted to ask him to make so eggs and toast for me since I couldn't currently do it by myself. But the voice I heard come out of me sounded like Rocky when he beat Apollo: slurred, delayed, unintelligible.

Hunger is another side effect of this med so I came down because I thought I could make myself seconds... I couldn't stand up straight; it was like my inner-gyroscope was off. I left the egg half scrambled in the pan next to two pieces of toast not buttered. Then, sleep.

I woke up and tried to text people how the med had worked but my fingers seemingly lost all potent dexterity. I couldn't type a word, let alone a sentence.

The only other off thing that I noticed was that my ability to swallow was impeded and I felt like I was choking multiple times throughout the day.

Also, I was pretty sedate. My affect was pretty flat.

I haven't lost hope... Please keep your prayers coming; I cherish them... oh yeah, please pray that they would allow me to get semi-permanent port to draw blood from, my poor hands have taken a beating.

"The effectual, fervent prayer of a righteous man availeth much" (James 5:16).

Love always, 

Anna Jo

Casimir Pulaski Day + Jenna

You know what's funny? I listened to Sufjan Stevens's "Casimir Pulaski Day", and it was by far my favorite song in high school before I internalized what it was saying about cancer. Two short years later, I would have people laying their hands on me for healing. Little did I know the quest that lay before me. When I watch the coronation scene of The Lion, The Witch, and The Wardrobe, I always imagine my new name would be Anna the Brave. I was not the nicest or the sweetest, but I had guts.

That moxy faded quickly after the Whipple surgery. I was angry at God, even though I didn't dare verbalize it because I tried so hard to fit the mold of a good YL girl who was the leaders's favorite. But why was I vomiting with a nine inch scar severing my abdominal nerves and blood seeping out of my feeding and drainage tubes at 18 years old? I still don't know, but I screamed at the pain, even though I had friends over who could hear everything from the downstairs bathroom I was in. My dad wisely suggested they abandon their Infuse-Anna-With-Optimism shifts early that day.

But what I'm really writing to say is that I just finished an incredible book called Worth the Suffering by Jenna Henderson. It's a collection of her blogposts, prayers, and her friends's memories of her before she passed away in 2016.

I noticed a HUGE difference in the way we both blogged about our experiences. I am convicted. Buy the book. Read it. I'm sure you'll be challenged. I want my complaining to turn into thanksgiving and I want a fierce love of Jesus like it appears Jenna had in her 30 short years of life.

Thank you, Jenna, for the legacy you left us for when we suffer. I hope to be as valiant as you one day.

With love,
Anna Jo

You can buy the book here: https://www.worththesuffering.com

How Do You Pronounce Clozapine?

Relieve

Etymology: Late 14c., "alleviate (pain, etc.), mitigate; afford comfort; allow respite; diminish the pressure of," also "give alms to, provide for;" also figuratively, "take heart, cheer up;" from Old French relever"to raise, relieve" (11c.) and directly from Latin relevare "to raise, alleviate, lift up, free from a burden," from re-, intensive prefix (see re-), + levare "to lift up, lighten," from levis "not heavy" (from PIE root *legwh- "not heavy, having little weight")

The notion is "to raise (someone) out of trouble." From c. 1400 as "advance to the rescue in battle;" also "return from battle; recall (troops)." Meaning "release from duty" is from early 15c. 

The bruises are healing and the swelling is going down. I don't have good veins in my arms, so, the past two times I've gotten my blood drawn in the last three days, they've used my hands.

But boy, when I feel hope rustling in the wind, I'd endure anything to realize it.

I hate cliche christian things, but the Lord undeniably gave me the word "relief" for the year 2020. And man was I glad to hear it. After seven years of slow-boiling torture (read: cancer + mood disorder + high motivation + low productivity), I might have a shot at becoming a translator, moving abroad, financially supporting and living by myself. All because I'm going on a cousin drug of Zyprexa. The only reason I can't stay on the solid gold that is Zyprexa is because it makes me gain weight "like a racehorse" as my psychiatrist so quaintly put it. But this new drug is "the most effective drug made" and the weight gain is less. So I have to get my blood drawn every week. The bruises and swelling may continue, but I plan on blasting forward. I feel hope for the first time in years. Real, genuine, down-in-your-bones hope.

The seven years started with my cancer diagnosis and treatment at age 18. I find it interesting that I'm starting my 7th year since then because, in ancient times, the Hebrews were called to a Sabbatic year every seven years. Debts were forgiven, slaves released, and, here's the biggie, NO cultivation of the land. This would fundamentally change the fabric of an agricultural society. And for the first time, after many times studying this concept, I realized the radical trust in the Word of God, Jehovah-Jireh, that it would cost the pre-exilic Israelites.

Though it was sad that they didn't listen, I hope to learn from their mistake. So, just as much as this is a year of divine relief, it is also to be a year of trust in God for radical provision.

I plan to update this blog more often and would be honored if you joined me on my journey towards healing and increased agency... and fun :)

Much love,
Anna Jo

I Didn't Wear A Jacket Today

I didn't wear a jacket today.

Depression is like a dementor sucking out your soul, leaving nothing but a shell of a human behind.

I woke up today and felt nothing. I still haven't decided if I can tolerate the anxiety or the abyss better. Either way, it's not like I have a choice.

But as I was preparing to leave for my bestie's bridal shower, I decidedly left my fake leather jacket draped across my club chair; I wanted to feel something and who says that something has to be an emotion?

I felt the bitter winter wind whip across my face. Bliss. Feeling.

I didn't wear a jacket today.

Cruciare

I'm currently on my seventh beer of the day (it's 6:15pm and I started at 6am, so they were spaced out). When I drink on a weekday, I know it's the anxiety. It's my salvation. Not really, but in my desperate grasps at sanity, it feels like it.

Along with the booze, A Beautiful Mind is playing in the background. It's taken me all day to get through it; the writing is so good and the acting to match. I feel less alone in my version of crazy.
Wow, I just started crying writing that. It's devastating what our minds can do to us. Schizophrenia and Bipolar are both classified as mood disorders, so, the similarities, especially with my occasional audio psychosis, helps me more than relate with John (the paranoid Schizophrenic genius), and sympathize with Alicia (his wife) as his caretaker. The psych ward scenes are particularly hard for me to watch. Russel Crowe (my celeb crush) does a great job exciting the fear and confusion that comes with mandatory admittance into a psych ward.

But, the main reason I'm posting is because today, I'm anxious. None of my meds helped, I went on three one mile walks and drank more beer that water. But nothing could taking the feeling of falling away, out of my gut.

'Anxiety' comes deep, deep from the word 'anguish.' Anguish is defined as 1. excruciating or acute distress, suffering, or pain. Yes. My psychiatrist once explained my drinking problem (the first time) to my parents like this, "A person can live depression; it's the anxiety they can't cope with. They will desperately attempt anything to temporarily cure the pain, the feeling of falling."

So here I am, without any answers. My Jedi psychiatrist put the ball in my court and I'm playing. I just don't know the rules. They change all the time, with the mind. It's a very transitory, ephemeral, and convincing organ. My psychiatrist said I was handicapped by this mental illness. I understand what he means; it's just hard to hear.

There is one relief. The word 'excruciating' from the definition of 'anguish'. Christ knows excruciating; it means 1. to inflict severe pain upon, torture 2. to cause mental anguish, irritate greatly. Yup, Christ knows. In face the word comes from 'cruciare' to torment, crucify (derivative of crux cross).

I remember a critical moment in my faith in Christ that changed me forever. It was at a Young Life camp. They were playing videos of the devastation around the word explaining that Christ took all the (physical) pain on himself at the cross. But in that moment, something clicked and I realized he also took all our psychic, our soul pain. I don't know why, but when I think of the cross, I always think of that aspect first, now. I cry almost every time, okay every time, I hear the gospel story. Because my pain has drowned me at times and I can't imagine what Christ experienced, taking on the psychic malaise of the world through all ages. I thank him. Thank You, thank You, thank You. I was 16 years old and crying at the gospel message. I looked over at my Young Life leader, Ally, and she nodded solemnly, knowing what I was just now realizing.

I am not alone in this wasteland of mental anguish; I am not alone.

A Case Study On Bipolar I, or, The Diving Bell and the Butterfly

It was normal, like any other visit. A touch of apprehension. Excitement at the idea of stimulating conversation (my doctor, unfortunately, chose to go to UVA, but he's brilliant).

My faithful psychiatrist (of four years now), the one who'd seen my veriest highs and my veriest lows, closed the door and returned to his desk. "You don't like med students, right? You can sense their presence."

"No," I said as I scrunched my nose in pseudo-disdain. "You can sit in on the next one, (blank)," he said to some eager med student on their psych rotation.

"How have you been?"

"I'm okay today, but I've barely gotten out of bed in months." (3 months between visits is standard in psychiatric care).

He looked down. My eyes were drawn to where his were looking and I noticed his eccentric blue socks with zig-zag green stripes on them.

"Will I have to live at my dad's house forever?" meaning, would I always be held back by this illness, would it be this bad forever?

He sighed and looked down again, "I don't think so; I think you'll come to a point where you can manage it."

"Lots of my patients that have bipolar are dentists [here I briefly interjected and asked if there was a common factor for that to which he replied 'intelligence'] they begin to realize how the system works, what medicines they need at what time. I think you're close to that, that soon you'll connect the dots." Oh yeah, did I mention my psychiatrist is like Yoda? He put the ball squarely back in my court.

I began to think of the litany of drugs I'd been on in the course of the six years since diagnosis.

Interrupted, my doctor lamented, "You were going to conquer the world when I first met you."

Weakly, after a pause, I replied, "That's still the plan," with as much cheer as I could muster.

"It's sad to see what's happened. You really were going to conquer the world."

...

"I don't watch movies often but there's a great one you should watch..." ... "A Beautiful Mind?" I finished.

"How did you know?!" During his fast-paced career he'd forgotten that he'd recommended it to me before and that even at that time I already said it was one of my favorite movies.

"Your life is just like his; he never was rid of the effects of his mental illness but he learned to manage and function and eventually achieve his dreams."

All very inspirational *tear*.

"I remember one of the first things you told me, when you walked into my office for the first time, is that you don't like men who drive big trucks, you, being one of the genuinely nicest people I know." He laughed.

"Now when I see men driving trucks, I think of that and think, 'You know, she's right. I don't like them either."

"Should refill all your current meds?"

It was like a dream coming to an end too soon. He always seems to possess the answer, the key, to my mental success, but he never quite tells me. I left the office and got back into my mother's car (I was too scared to drive this far away from home).

The next day, I went on my first walk in probably a year. My first time outside, other than to go to my car.

I took a walk.

"Does the cosmos contain keys for opening up my diving bell? A subway line with no terminus? A currency strong enough to buy my freedom back? We must keep looking. I'll be off now."
-Jean-Dominique Bauby, The Diving Bell and the Butterfly, Berck-Plage, July-August 1996