Breaking down Julia’s Hospital room entailed packing up mementos from Christmas, New Year’s, Valentine’s Day and St. Patrick’s Day. After 109 days, she was released 1 day before Easter.
Since my last post, people have queried me about Julia’s brain functioning, which, nearly 4 months post-trauma, is slogging woefully behind her physical progress. Specifically, how can Julia beat 3 highly educated opponents in Scrabble, then not remember that she just ate lunch? The explanation has to do with the spot on her brain where she hit her head the hardest.
We were told in the hospital, the first few weeks, that the area of brain that was injured effects cognition, memory and personality. Dear God, please take anything but her personality. I don’t need a do-over on that one and probably couldn’t replicate it if I tried. So far, all has come back except memory. I loved when I heard that her close friend George was roiled by my last blog post because he didn’t see any of the deficits I mentioned. In the words of a faculty member who knows him well, “George thinks he can just pluck Julia out of rehab and stick her in St. Joe’s campus and she’d be exactly the same!” He wants to see her as the same. Which, if you play games or spend time with her, is easy to think. I do it all the time. George’s stalwart, defensive faith in her stings my eyes.
Julia, for now, is not the same. Her thinking and analytical skills are developmentally on point. Her vocabulary and word-retrieval are well above average. Her wit, I dare say, is sharper. But, because the bruise on her brain that’s occluding memory retrieval is, as yet, unhealed, she is not laying down new memories. Or, if she is, the mechanism that retrieves them is not working. As her Speech Therapist puts it, “There’s a disruption in the retrieval system (of memories).” When I ask this therapist about chances of recovery, she simply says, “We would have liked to have seen progress by now. Actually, much sooner than now.”
I’ve learned that no one will give a straight answer on prognosis. Not only because they can’t, scientifically, but because no one wants to tread on a mother’s hope. Because of this, I’ve learned to ask my questions differently. “In your experience, have you ever seen a patient like Julia, given her deficits at this stage in the game, recover memory?” Because I’ve litigated them into the corner, their helpless, honest answer is No. I have never seen someone like Julia recover her memory.
The last week before discharge, Julia’s dad and brother were on vacation. I can’t tell you how zen and powerful it felt, even though I doubled my hours, to be there mostly alone with her (thank you Lisa and Colin for the breaks). In those 7 days, I feel like I converted 10 lbs of fat into muscle. God’s message to me was loud and clear: “You’ve got this, Dyan.”
As restated throughout this blog, Julia was raised on the belief that everything that’s happening to us, is happening for us. I had to learn that much later in life. Julia was fed it directly from childhood.
Since she was young, I’ve told Julia she was born to write. (I never knew what I was born to do, and still don’t. Besides raise a child again from scratch at 20. With someone who doesn’t like me very much ; )) Not because of her language skills, per se, but because she has a writer’s way of looking at the world. She was very spiritual from an early age, especially when it came to nature. She was constantly curious about Why God did this, Why God did that. I’d remove dead bugs, rocks and leaves from her pockets in the laundry room… (Don’t you want an American Girl doll?) It always reminded me of that Albert Einstein poster where he’s making that outlandish face, his quote below reading: “I’m interested in God’s thought. The rest are details.” God is a writer, too, I’d tell her. God wrote the world. When you tap into your own creativity, you tap into the Creator’s, as well, I’d tell her. That’s why it feels so good. We’re all walking around connected – to one another and to nature – but don’t know it. That’s why it feels so bad.
It actually took me seeing things through her lens to get the connection between spirituality and nature. Alice Walker wrote a book that later became a movie called, The Color Purple. The story, at its essence, was about appreciating the beauty in life in the face of crushing pain. The message I got was that acknowledging the beauty in the world is a way of worshiping God. (“I think it pisses God off if you pass the color purple in a field somewhere and don’t notice it.”) My friend Lauren put it aptly way back when, when we saw it, when she pointed out, “Giving thanks for all that is, is a form of prayer.” This is one thing I didn’t have to teach Julia thea way I had to teach myself. She came with it built in like software on a computer. Reinforcing it in her simply reinforced it in myself.
How To Survive a Tragedy (Lessons from the road)
I. Serenity Prayer (Prayer of St. Francis)
God grant me the serenity to accept the things I can not change. the courage to change the things I can, and the wisdom to know the difference.
This is not a plaque of pious platitudes in your kitchen. This is a working blueprint for moving through tragedy.
If you haven’t spoken to a family member in 10 years, that’s a tragedy. If you are in a dead-end job that doesn’t engage any part of you that makes you feel alive, that’s a tragedy. If you’re stuck in a loveless marriage, hoping to teach your kids about family values, while you’re teaching them that loving always involves trauma, that’s a tragedy. One which they will go on to repeat unless you teach them to honor themselves by expecting better.
The prayer is in 3 parts. Approach it from the last part first: The wisdom to know the difference. Get out a legal pad and draw 2 columns: Things I Can Control and Things I can’t. Find a home for everything that’s bothering you underneath one of them.
For the things you can control, pray for the courage to do so. Think prayerfully about how to bring about change, knowing you can’t control others. But act by all means, on what you can control in yourself. Even if you aren’t convinced your actions make a difference. They almost always do for others. They always do for you. I heard on the radio recently that 70% of Americans polled say the best part of their day is when they are eating. If that resonates with you, you are not using the Serenity Prayer.
We’re called to something higher. Which entails getting more out of our moments of joy as well as our moments of suffering. In the West, we aren’t as good at the latter as our Eastern siblings. Find the teaching moments in your sorrow. Find the thing that the thing that’s taking from you, is giving you. Find the muscles that the thing that’s weakening you is building in you. Find the color purple in a field of weeds and notice it. And throw up a prayer of thanksgiving to God while you are, even if through tears of pain and gritted teeth.
This is what my friend Dan’s death at the age of 27 taught me. The ability to hold the good and the bad at once. And above all, learn from it all! Take a breath and see yourself as higher! Because both are always happening at the same time. This is the developmental task of adulthood. Find the light and the dark that are co-occurring and hold them both together. One doesn’t obliterate the other. We’re used to thinking in categories. The challenge is to respect and make room for them both at the same time. The Yin and the Yang. In our Western world of rugged individualism, accepting life on life’s terms is the hardest. Sometimes the best you can do is the next right thing. Drop the perfectionism. Good is good enough.
If you haven’t experienced this task yet, personally, you don’t know what I’m talking about and are probably skimming over this paragraph. Gee, she seemed to be so on point with everything else… If you have experienced what I’m talking about, no explanation is necessary.
For the things in your column that you can’t control, pray for the serenity to accept them. Which means, stop throwing energy behind them except acceptance. Just stop. Extremely difficult, but extremely important. And pray. Which is not nothing. Praying is a real thing. And has real consequences. If I was the age of some of you who are reading this, I’d be rolling my eyes. If I could talk to my younger self, like Red did, fictionally, in The Shawshank Redemption, I’d say, Just wait, Dyan… you’ll see.
II. Be Careful of the Messages Your Actions are Sending
If after 60 seconds of watching Julia try to put on a sock, I acquiesce and help her, is she reading in my gesture, “My mom wants to help me because she loves me.”? Or, “My mom thinks I can’t do it.”
This reminds me of what I learned from the kids I used to work with who believed their fathers didn’t love them because they were never home. When I suggest the possibility that, given the cultural morees and expectations of men at the time, that in the dad’s mind, the best way of showing his love for them was TO provide, they look at me like I’ve suggested 2+2=6. Another pacifying adult who doesn’t get it. My dad didn’t love me, no matter what psycho babble spin you put on it. If my father loved me, they think, he would have been there, would have tossed a ball. He would have enjoyed my company. He would have recognized when I walked into a room. Kids, like adults, are all the same. At our most primal level, we all want to know we matter. Find ways to convey to the people who matter to you – in their language – that they do.
III. Consider that God is trying to Develop Something Underdeveloped in you.
Case in point is Julia’s dad, Pat. Much of the consternation in our marriage (besides a million failings of mine, I’m sure) revolved around his vocation. Simply put, I begged him to teach and coach. I could see clearly, early on, that these were his salient strengths. Because, I’m surmising, he wanted to provide for his family the way his father did and brothers were doing, he followed a more lucrative career path. One that took from him, rather than gave to him. And when something is taking from you, you rely on the reserves and resources that are there for you… including those you come home to at night.
Now, just as I was getting my last child into college and eagerly awaiting disconnecting myself from our co-parenting struggles writ large, here he is coming into his largess. And benefiting my daughter in the process. The expression of my mother’s – the crooked finger of God – comes to mind.
For me, the underdeveloped personal skill this situation has developed is patience. I have close to zero executive functioning skills (time mgmnt, organization, measure-twice-cut-once, etc). When I used to have to develop such things in the kids I worked with, it was tedium-hell. Put your rain hood up, zip your back pack, put on your goloshes, where’s your umbrella? Ughh. I’m a big picture gal who averts details as much as possible.
Now, my girl’s progress depends on as much routinization and predictable repetition of details as possible, because she’s not laying down memories any other way. What are the chances? If you know me personally, the expression Barge in where angels fear to tread may come to mind. Most people don’t need to learn that barreling around the corners of a Brain Injury Unit is not a good idea. If you’ve been a whirling dervish your whole life, it takes something extremely significant to change your stripes.
I watch myself now slow my roll. I notice how much calmer I can be, I have to be, and how much more I notice and make room for others in the spaces around me. I will always be excitable. But impulsive at the expense of others I am no longer. Or at least to a lesser degree. Thank you, Julia.
For Julia herself, her budding creativity with writing was always surprising. My brother Rob, who is an author, told me when I was younger, it isn’t enough to have writing skills to be a writer, you must have something to write about. If you love music, you know the best R & B singers actually have real blues to sing about. Most of the early hits of the pop culture phenom Taylor Swift (Julia will hate that I ref’d her, but it serves…) were penned, sitting in her room, alone, during football games or dances from which she was alienated and afraid to participate. This is what she let, out of desperation, connect her to the source of all creativity, which is God. Where the “muse” is. Which, then, allowed us to connect to her. This is an example of someone holding the dark as well as the light and spinning it into gold.
I say to Julia directly, over and over, “You were born to be an author, Honey, and here God served up the material for you on a platter! Wasn’t that nice?” When she laughs, I add, “Your muse showed up in a fast SUV.” Finding meaning through trauma is imperative to surviving it.
The other day, we were in the bathroom, when I recounted this familiar repartee (for the 1st time to her) and she laughed particularly hard. “My muse showed up in a Fast SUV!” Because the way she repeats it makes it sound like a country song, we’re both soon in hysterics, robbing me of the ability to release the diaper tabs properly. “I’m sorry you have to do this.” she sobers me up. “Thank you for always being here.” I repeat for the gazillionth time, “There is no place I’d rather be.” This elicits her thank you, on cue, for me “seeing it that way”. Which elicits in me a “Thank you for appreciating me seeing it that way.” Which cues her gratitude for me making a compliment for her out of something I was doing, as she pauses to get behind the ‘thank you for thanking me for thanking you for…’ She stops to process whether she has the cognitions to articulate the next round of thanks.
As she thinks, competitively, how to bat back a verbal tennis ball, I’m reminded that we have been doing this our whole lives. Thanking each other, layer upon layer. When I hear her say to visitors who come in and ask how she is, “Better now that you’re here!” I recognize that this is the retort she’s heard from me her whole life in regard to her. Funny the things that remain emblazoned on your brain no matter how hard you hit your head on a car windshield and then again on an unforgiving pavement.
IV. Develop your Support System
I’ve heard it said that the quality of one’s life is directly equivalent to the quality of one’s relationships. If that’s true, nowhere is it more apparent than in a rehab hospital. We have heard, ad nauseam, from staff, that Julia is 10 steps ahead of the game because of the support she has. Nevermind that both her dad and I are from big, loving families who have circled the wagons around us, in addition, both her dad and I stopped working the night she was struck. She has been at the epicenter of our lazer-focus since. We’re told there’s no telling how to quantify the benefits of that. Where healing is concerned, often love does more, in a practical way, than medicine.
I look at her hallmates languishing in the hallways, staring into space, thinking about what, God only knows… I wonder what they would be like if they were flanked by 2 parents much of most days. Being there to be their memory in awkward conversational moments. To have someone whispering in their ear all day, bulldozing over the other parent to steer the wheelchair, making dumb jokes all day at the expense of the one who wanted to push the wheel chair. (lol) What would their progress be like if they had that kind of support and stimulation, literally fighting over them, for over 100 days in a row?
A Word About Discipline
It’s a delicate balance to be honest in this blog, the essential and hardest task of any writer. How do I weigh protecting interested parties, while also being an authentic witness for those who have, or will, go through something similar? This is not just a story about braving something. This is a story about braving something under trying circumstances; a wholly different thing.
The strong belief I’ve held about protecting the image of my co-parent to my children, to which I have been devoted, has been tested recently. Because I know and have seen first hand, as a social worker, the results of anything other, I have endeavored to paint the kids’ dad in the best light. Unless they’re lying to protect him, Pat has done the same. This situation has tested this commitment on a whole new level. I’m proud of our fortitude in keeping our conflicts, for the most part, away from our kids.
Anyone who knows anything about child development knows, if you want to get in the express lane to screw up your kids, vilify the other parent in front of them. Kids are made up of half of one parent, half of the other. Whether you are together or not, bank on this: When you degrade the other parent to your children, you degrade them. Are there times I want to say to Julia’s dad, “If you’re going to talk to me like that, you really should give me a chew toy”? Of course! But because my daughter is there, I say, Can I get you something from the cafeteria, instead. This is being an adult. This is honoring your vows about the respect part even if you couldn’t keep the rest of them. For better or worse. This is being a good parent.
Whether you make all their swim meets or volunteer on the Mother’s Guild or not, if you actively put down the other parent in front of them, to assuage your own hurt, even if you think it is for their protection, you erase all of that. It is to their direct detriment. And you exact wounds upon them that will interfere in their future relationships long after you’re gone. Any friend, worth their salt, listening to your harangue about how you schooled your kids on their other parent’s deficits, is not feeling badly for you; they are feeling badly for your children. Trust me.
It’s a strange experience to help someone write thank you notes for things they can’t remember. I tell her that her soul has formed relationships with these staff members that her brain does not recall, which makes the relationships no less real. I explain to her that the patients on her unit are not happy about where they have wound up. And that they take out their frustrations on the people who are trying to help them.
By contrast, here is Ms. Thank you / I’m sorry / You guys work so hard. I tell her she is the reason most of them went into this field. That I will be next to her at discharge explaining the tears that fall. Because she has inspired them in their jobs to have more patience with the next patient. I tell her what she’s given is a gift beyond measure. That that’s why staff who work during the week are offering to come in on a Saturday to say good-bye. While I’m off on my esoteric high about this, Julia keeps it real with, “I’m just glad I was polite.”
A Note To Our Families
It isn’t easy when someone treats someone you love badly and someone else you love beautifully. This is something my siblings know much about. My sisters and a few select friends are owed a great deal of credit for being able to hold the space for me, to express my frustrations with Pat, without them, themselves, turning against him. Secretly, some part of me wants them to, of course. I’m only human. But their eye is on the prize of what’s best for Julia. And I love them for that. It takes a lot of restraint and integrity. Especially my 3 sisters, as protective as they are, me being the youngest. They do it for Julia. She reaps the dividends of their commitment to a higher way. And it frees me up to vent away (which is necessary for my emotional health). Because I can always count on them to greet Pat with a hug and open arms. My 3 brothers will always shake Pat’s hand and look him in the eye. Because that’s how we roll. I respect them for that. The Sopranos, we are not.
I am equally impressed by my in-law siblings. When Pat’s brothers, Rich, Matt and Charles visit, those are the best days. Sincerely. For all of us. His sister Norine, facing her own health crisis elegantly, turns Julia’s hospital room into the Jimmy Fallon show. I watch Julia laugh… then watch me laugh… then laugh harder. This is what she has always wanted. I couldn’t give it to her when she was 8, or 10, or 12. But I can give it to her now. When I dare say she needs it the most. And for that, my in-law siblings are enshrined upon my heart. When they say, What more can I do?, I always think to myself, You’ve already done more for her healing than you can imagine.
3 young ladies I’m particularly impressed with are my nieces, Alyssa, Jeannie and Elise. Not only has their devotion to Julia been demonstrated these 109 days, it’s also the way they’ve shown up for her that gives her a spark that is beautiful to behold.
Moreover, I have seen the deep bond they have with their own mothers, which has been touching to me, as it reminds me of mine with Julia.
Alyssa has her Mother’s fortitude. Her determination to take things in hand and simply make them happen is so my sister, Maureen. Nevermind the fact that she’s told her older aunt, on occasion, to blunt and buffer some of my more direct language in my posts! She and Julia enjoyed a singular connection, old souls (and Vegans) they are both.
Jeannie has her mother’s caretaking and nurturing. But in a bolder, take-no-prisoners way. She won’t hesitate to charge in when something/one she loves is threatened. Step out of the way if Jeannie is on a mission. Be grateful if you’re on her good side. You’re in good hands.
Elise has her mother’s heart. She is more watchful and patient, stepping humbly out of the way, not seeking attention, less interested in credit than she is in the value of giving itself. She has a quiet, soulful, abiding presence. Her gentleness stings my eyes because it reminds me so much of her cousin.
I’ve indulged myself in hugging the stuffing out of these young ladies in a way I can’t yet with my daughter.
3 days before discharge, the Neuro-Psychologist, a smart, seasoned, pragmatist, who is the head honcho in terms of Julia’s cognitive rehab, sidled up next to me on my perch where I watch her physical therapy. She recounted the progress Julia has, and has not, made. A lot of small talk culminated in the following…
“Is the girl, who left that dorm room that night, ever coming back?”
“Is she ever going back to college?”
“Will she ever be able to live independently?’
“No, probably not.”
I wrestled with whether to share that publicly or not. Mostly because I don’t want those limitations taking root in your mind. I respect her for her candor. That is her job.
Strangely, the way it landed on me, was less depressing as it was motivating. It’s not to say I dismissed what she said. It’s just to say I didn’t believe her! Which I didn’t fully embrace until I relayed this to her writing teacher from SJU, Dr. Spinner, who responded, “Did you believe her?” The question, somehow, released me to have the choice! (Hello… Ms. The-Last-of-Human-Freedoms-is-the-Ability-to-Choose-Our-Attitude-in-Any-Situation!) I forgot! It magically released me to be as unbelieving as I was. Thank you, Jenny, for helping me choose my attitude rather than accepting what was dictated.
I called my friend Laura, the widow of our friend Dan who died at 27, who I frequently reference (Being part of his journey prepared me for this journey.) Dan was born a hemophiliac in a time before they made blood clean. He contracted HIV from blood transfusions our senior year at BC. The very few of us who knew what he was battling, made the choice to believe, full-force, that he would defy the odds and live long enough for an effective drug to be discovered to save his life. Less than a year before those drugs were FDA approved, Dan’s time ran out. I wouldn’t have changed a thing about our approach, though, and the attitude we chose. I think it extended his life and made his last years richer. It surely had that effect on ours.
I told Laura what the Neuro Psyche said. I asked her plainly if it was reasonable not to believe her. She said, Yes, and that she would not believe her with me. Thank you, Laura.
When I hung up the phone, an image came to my mind, of a witness to the accident, whom I met at the arraignment. A simple man, he told me that when the ADA called to ask him to appear on behalf of JFB, his response was, “That girl lived?” I loved that he had the audacity to say that to me. After he knew I’d just listened to grueling details of the state in which the police found Julia that night.
I loved how he took off from his job at Chilies and had to borrow my phone to get a ride back. He’s couch surfing at friends with a phone that’s been shut off for non-payment. But here he is, downtown, on Julia’s behalf, to do the right thing. And I loved that he was enamored that Julia went to St. Joes. “That’s a good school, right? Damn, all that potential…” I told him we don’t get many opportunities in the average week to contribute as much as he had, to someone else’s life, just by showing up. I laughed when I relayed this story to my ex-bf John and his response was, “Can we pay his phone bill?”
When I think of this recent forecast that Julia will never fully recover, I say to myself, she wasn’t necessarily supposed to live either. But she did. There’s a reason for that. It’s not for me to know. It is for me to trust. Trust in the loving Hand that’s behind all this. For her, for me, for her dad, and even for you. We’re all connected.
That girl lived. Thanks in large part to the people who have held her in their hearts and prayed for her, including yourself. And the exciting thing is, she’s about to do much more… That girl lived for a reason.