Clarity is a Bitch

The ego is a funny thing and mine has created tunnel vision around Sean’s illness. I focus on the impact it has on me. I lost my partner. I lost my co-parent. I lost my income. I lost my idyllic family. I lost my future, my camper, my vacation plans, my freedom, my carefree existence. I’ve even lost a few friends who just don’t know what the hell to do with our new dynamic so they have chosen, instead, to shrink into the background. I get it. Prior to this mess, I might have done the same.

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What I often fail to recognize is the impact it has on Sean. He has, quite literally, lost his mind. Without the benefit of a functioning limbic system, he’s lost the ability to control his emotions, to remember things that happened five minutes ago, to process complicated things happening around him, to see clearly, to think critically. He’s lost his identity as the provider, the fixer of all that is broken, the finder of all that is lost. And, in a sadistic twist of fate, his mind doesn’t allow him the luxury of not being aware of these deficits. He has moments of total clarity when he not only recognizes his impairments but also feels the weight of them in his life to come.

Can you imagine?

He gets one life and, barring a miracle, he will spend the second half of it confused and unable to function at a level even close to normal.

Today I watched one of these revelatory episodes in the car on the way home from a physical therapy session that ended badly. Sean was in such a hurry to get out of the clinic that I was unable to speak to the therapist to find out what the heck happened. He was crying and angry. By the time he buckled his seat belt, he couldn’t remember what had set him off. When I pushed him on the issue, he clutched the sides of his head with both hands, rocked back and forth and began to sob. He banged his hands on the dash and said, “I can’t remember. Damnit, damnit! I know something happened but my brain is broken and I cannot remember what. Why me? Why is this happening to me?”

If I had a nickel for every time I asked myself and God that question…

This scene brought me back from my own pity party and into a place of true empathy, something my survival instinct has allowed me to avoid much of the time. I looked at him and saw the man that I love and have shared my life with for the past 21 years, struggling to make sense of a devastating brain injury that makes no damn sense. It broke me.

How will we create some sort of quality of life for the next 40 years? How will he ever accept his condition and stop torturing himself by asking why? How will I? Will he ever experience joy again? Is it even possible?

These are the questions running through my head on this fine Monday morning. I think a hilarious cat video is in order. Got any good ones?

Books for the Broken, Part 1

When my charmed life came to an abrupt end last August, I attempted to cope in many ways. The first was to stop eating. I was so consumed with anxiety and fear that I failed to pay attention to the needs of my body and only ate when it screamed loud enough for me to hear. This resulted in a quick 30-pound weight loss. Fitting into clothes I never dreamed I’d wear again was one of the few things that brought me pleasure during that time but it was short lived. When the constant panic abated, I resumed an activity that has been a lifelong companion: eating my feelings. Pudgy Julianne is back but that’s ok. We still love her.

While my desire for food all but evaporated, another craving appeared: an appetite for books about suffering. I’m a person who likes to prepare myself for things. When I started to take writing seriously, I read every book I could find about making money as a writer. When I decided to plant an herb garden, I picked out as many books on growing herbs as I could get my hands on at the library. That’s how I roll. I don’t like attempting new projects unprepared. Suffering didn’t afford me any preparation time. She came over me like a tidal wave, swallowing me whole, leaving devastation and carnage in her wake.

So, I did what any good preparation junkie does. I developed a voracious appetite for books about suffering. I scoured the internet for recommendations, seeking advice from both secular and Christian perspectives. I wanted to know all I needed to know about suffering—how to survive it, how to thrive, how to raise children, how to be a caretaker, how to accept a life that is nothing like I planned, how to walk with my kids through their grief for someone who still joins us at the dinner table every night.

For those of us now suffering and those who will (don’t kid yourself—that’s all of us), I am developing a list of books that have helped me during this time. Books that have given me inspiration, direction or made me feel less alone. I’m encouraged to report that there are many books for people like me—those of us who are facing the unimaginable.

I’m going to kick off this series with a book I just finished: Everything Happens for a Reason and Other Lies I’ve Loved by Kate Bowler. Written by a professor at Duke Divinity School who has spent the bulk of her academic career studying the prosperity gospel, this story chronicles her struggle to face a stage IV colon cancer diagnosis as a young mother, wife and professional.

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The prosperity gospel, with its if-you’re-good-enough-and-pray-hard-enough mentality, is devastating for anyone facing a crisis or suffering because it suggests that whatever tragedy a person or family is facing is somehow caused by their lack of faith. Bowler manages to approach the well-meaning sentiments of her friends and colleagues with compassion and humor and teaches all of her readers a valuable lesson in what to say (and what NOT to say) to someone in a crisis. My favorite part of the book was a list she provided in Appendix I entitled, “Absolutely Never Say This to People Experiencing Terrible Times: A Short List,” a must read for every human being on earth.

Read this book. It will make you a better friend.

Thanks Kate.

De-Compartmentalizing

It has been five days since Sean’s discharge from the psychiatric hospital. He is not the father and husband that left us 2.5 months ago and we have to work this new version of him into our lives.

After 75+ days in a hospital bed, this adjustment has not been easy on him. He’s not used to the kids, the dog, our new housemate (we have a college student living with us), the noise, the chaos. His body is sluggish and atrophied.

We are not used to his impulsivity, his slurred speech (medication-induced), his unpredictability, his slow-response time and his spastic movements. In his absence, we built a safety bubble of distance around us, allowing ourselves to compartmentalize both Sean and his illness–not fair but absolutely true. It has been an incredibly difficult adjustment and has sent yours truly right back into crisis mode.

Right now, Sean is washing our dinner dishes at the sink. He’s working like a blind man, using his hands to guide him from dish to dish, the effort of pointing his eyes downward too difficult. His left leg is doing its own thing, moving independently as if being controlled by a sadistic puppeteer. He takes each dish and rubs it for at least 30 seconds with his hands under the water before placing it in the dishwasher.

Head in Hands

Me: Sean, you don’t need to scrub each dish with your fingers. We have a really good dishwasher. You don’t even need to rinse unless there are visible food chunks.

Him: continues to rub the dishes without even acknowledging my words.

I mention the wasted water, a strategy that would have been very effective a year ago. Still no response.

I  watch as he struggles through dish after dish, banging around like he’s in the galley of a ship during a storm. It’s painful. Every fiber in my being wants to micromanage his every move, to teach him how to be normal again.  I just want him to be normal again.

I want to bask in the glorious monotony of a conventional life.

But a conventional life is a privilege I no longer have, he no longer has, we no longer have. The task at hand is to walk away from the sink, let him do the damn dishes, find a way to accept Sean just as he is, and find meaning and fulfillment in the shit storm of our unconventional life.

Urine Not Gonna Believe This

Spending two weeks in the hospital means making certain concessions. For example, I typically don’t allow anyone other than a child who is either bleeding or cannot breathe into my room at 2 a.m. but, here at the hospital, there are CNAs coming in at all hours of the night to check Sean’s blood pressure, draw blood and take his temperature.

I get it. These disruptions come with the territory. Armed with an eye mask and sleeping pills, I can easily overcome these inconveniences.

One thing I cannot abide is Sean being asked the following questions:

Have you tinkled any since I last saw you? How many times have you tinkled?

Richard Simmons

No amount of sedatives can squelch the rage that builds up inside of me when she asks these questions repeatedly to a 44-year-old man.

I’ve spent the last two days trying to come up with a clever response but my creativity is on hiatus. If anyone’s got a witty, biting comeback to a non-pediatric nurse’s use of the word, “tinkle,” I’m all ears.

Hospital Hoarder

Julie, our sweet night nurse at Memorial, walked into the room a few minutes ago to take Sean’s vitals and give him some meds. She was adjusting his blood pressure cuff and IVs when what appeared to be a large ball of trash rolled off the side of the hospital bed. When it hit the floor, all manner of cafeteria contraband emerged from the flattened bundle. There were several single-serve Country Crock containers, some mayonnaise packets, a few packs of jelly, and enough salt and pepper to season week’s worth of meals.condiments

Julie was perplexed. Well, would you look at that. There’s a bunch of butter and condiments on the floor, she said, flashing me a look that was the facial equivalent of making the finger-around-the-ear cuckoo sign.

I took a closer look and discovered that Sean had taken one of the hospital-issue puppy pads (for lack of a better word) that the CNAs are required to use every time they make bed, folded it carefully, and laid it between the mattress and the top bed rail. Apparently, at each meal, he has been taking the leftover unused condiments and stuffing them into his impromptu hobo roll,

Oh Lort, you might be thinking. Sean has lost his damn mind. And you are partially right, but this behavior isn’t symptomatic of a brain injury.

It’s Sean Hale 101.

Sean’s a hoarder and one of his primary hoarding targets has always been restaurant condiment packets. If I were to do a 30-second sweep of Sean’s vehicle at this very moment, I would find no less than 10 ketchup packets, 12 napkins and at least 3 straws.

I chuckled a little, shook my head and smiled at Julie.

Sounds about right, I said.

 

Identity Crisis

Tomorrow marks our second consecutive Easter in the hospital. Last year it was Vanderbilt, where Sean was having his cancerous abdominal lymph nodes removed. He was there for five days. I was terrified, so much so that I asked my lifelong BFF to drive in from South Carolina for moral support. We had a hell of a return trip from Nashville, complete with a flat tire, many tears, a drugged-up Sean and a couple of nervous breakdowns. You can read about that adventure here.

Panic button

What a difference a year makes. We’re at a different hospital now. I’m calm. I require no companions, no moral support to help me advocate properly for Sean, no Xanax. I am not so fraught with anxiety that I can’t handle my kids. I’m confident and comfortable, dividing my time between the hospital and my kids, leaving Sean—with his erratic, involuntary leg movements that brought us to the ER last night—alone in the room for hours at a time.

Who is this person with her hands on the keyboard?

I’ll be damned if it ain’t me.  

Risking it All

I haven’t had to make many sacrifices for my family in my 43 years. Sure, I’ve played the mom martyr card a few times and, in the last six months, that card may have even been justified a time or two, but my sacrifices have been minimal. That all changed yesterday when I made the ultimate sacrifice and agreed to let my son teach me how to play Risk.

Risk

Perhaps this doesn’t seem like much of a sacrifice to you. I get it.

It’s just a game, you say.

Yes, I agree. But it’s a game I vowed never to learn or play under any circumstance.

I hate strategy games. I suck at them. I have a hard time thinking offensively and defensively at the same time, and thinking 12 steps ahead? Not my strong suit. I’ve managed to live a relatively successful life without ever learning to play Risk. I was hoping to make it to my dying day having never laid hands on a Risk army (I’m sorry to say that I now know what those little plastic shapes are) or knowing what the goal of the game is. I failed.

Why, you ask. Why did you fail? 

Well, I reply. I did it for love.

 I did it for my 15-year-old son who adores strategy games and, just like his dad before him, can play Risk–his favorite–for hours on end.

I did it because my husband—a formidable Risk player who never lost a game—cannot play like he used to. His equally formidable ego is still intact so losing is hard on him. He’s an emotionally taxing opponent, especially for Truman.

I did it because it broke me to watch Truman, with his endless patience, trying to defend himself against his father’s insistence that he was manipulating the rules to give him an edge (he wasn’t).

I did it because subjecting my brain to the torture of learning a world-conquest strategy board game pales in comparison to the torture of watching Truman attempt to play by himself with his father. He needs a buffer and I have decided to make the ultimate sacrifice and learn to play Risk so that I can serve as the intermediary between father and son.

While the two of them attempt to conquer the world, I’ll do my best to keep the peace.