Julia was struck on December 13th, two weeks before Christmas. She is due to be discharged on March 31, one day before Easter.
The initial meteoric improvements have flattened out some and a longer term picture is coming into view. Every day is still a wonder. Her ceaseless patience and gratitude even in the most grueling scenarios astounds me. “Julia, how is it possible for you to never become frustrated?”
“How can I be frustrated when there are so many people around to help me?”
Julia’s memory before the accident is relatively in tact. Her short term memory after the accident is relatively non-existent.
When you have immediate to short-term memory loss, it’s like waking up from a dream and not knowing where you are, over and over and over.
Every therapy session usually starts with Julia being asked if she had a good breakfast or lunch, etc. She has no idea. What has she done so far today? No idea. Where does she go to school? Sometimes she says St. Joes; sometimes she says Westtown. Today she looked at me and said, “Do I usually know?” What is she studying? She looks at me searchingly… The nurse waiting is the car behind her at the toll booth and Julia can’t find the change. Small talk does not come easily.
Many times a day she asks where she is and why. Not in an alarmed way. She knows she’s safe, although, for the life of me her reality would scare me to death. When she’s sitting in her wheel chair, she asks calmly, “Will I always be paralyzed?” “You’re not paralyzed Honey you can walk!” “Oh, okay good.”
Since she thinks every time she asks is the 1st time, I answer like it’s the first time I’ve been asked. When I repeat the chorus of where she is and why, “There was an accident. You were crossing on a green light and a car going too fast hit you” she always has the same response. “Wow, that must’ve been scary (for you). I’m sorry I put you through that.” “Honey,” I always say, “I knew you were going to do great things in life, but survive brain surgery by 20? You’ve outdone yourself.”
Julia has Post-traumatic Amnesia (PTA). Just like the vision in her right eye, it is unknowable how much functionality will return. When you have PTA, and you aren’t laying down new conscious memories, functionality can be developed from routine and developing rote habits. We make lots of lists and cross things off methodically.
Julia is rarely alone. Her dad comes before she wakes up. We overlap for several hours during the day. I leave after she’s gone to sleep. A while back I got home after she’d gone to sleep. For no reason, I checked my email before I fell into a hot bath, and as I’m online a message pops up from Julia. Huh? I leave her computer up and in arms reach of her bed, with her water, when I leave, but I didn’t even know how much she could use it.
“Hi Mommy! I’m up! Where are you?”
“Hi! I’m at a hotel and I’m ready to be picked up. Daddy knows the address. I’m sorry I didn’t call before but I can’t find my phone. I’m ready to be picked up now, so can you come please? I’m sorry for staying out so late. I love you! xo, Julia”
I emailed back but no response. I called the nurses’ station but with no phone in the room, there was no way for me to talk to her. I would have turned around and gone back but the weekend nurses who don’t know me chase me out at midnight.
The nurse went in to check on her but she’d forgotten she emailed me. The next morning I posted the following:
At night, after dinner and her shower, we have our best conversations. We go over the day. She marvels at all the things she did that she can’t remember. She can’t believe how nice the visitors are who came to see her, whom she can’t remember, were. The upside of PTA: You get to relive good news! She always ends with the apology, “I’m sorry I can’t remember.” To which I always respond, “You have a brain injury Honey, you’re not supposed to.” She calmly says, “Okay.” Whenever I help her with her personal needs, she apologizes the most. I always say, “Don’t worry Honey in 30 years roles will be reversed.” Pat chimes in, “30? How about 10!”
It takes me longer to get home from the hospital at night than it should. I barely go the speed limit. I used to love to drive. I liked the speed and control of driving. I was a lane changer.
Now I’m the annoying driver I used to tailgate.
When you send your child off to college, there is a certain sense of relief. All those child-locks worked. All those convos in middle school about how to manage group dynamics were survived. All those lectures on who not to get in the car with, or to never take a drink you didn’t see poured, were successful. You got them safely to adulthood.
You ceremoniously launch them off to St. Joe’s, a safe school, by all expectation. You know how responsible your daughter is. She takes way fewer risks than you did at her age. She’s not a rule-breaker. She is cautious. She doesn’t put herself in harm’s way.
When something totally random happens, you can get into that mental trap that anything can happen. When you focus on how little control we really do have in life, fear replaces a certain freedom. I miss that freedom. I liked changing lanes.
Growing up at the shore, I learned how to survive a rip tide. If you fight it, you will be pulled under. If you let yourself go limp, I was told, you will go under momentarily, then you will be shot out. Thus I raised my children with the expression: People don’t drown because they can’t swim; they drown because they panic. Besides a deer in the headlights, I found myriad situations to illustrate this point and extend the metaphor. Katnis, a character from Julia’s favorite book series The Hunger Games, is a great example of this. If you can teach people to think through fear, the world is their oyster. Julia, whom I have not seen blink once, is now teaching me.
She was asking her Speech Therapist the most beautiful questions the other day about her future. She is as gentle with herself as she is with others. I tried hard not to pass down self-destruction or deprication to my kids. In that moment, I felt mildly successful. Even in the face of her impaired left side, because of her right-brain injury, she is patient. After persevering to tap the top of a cone with her left toes in an obstacle course again and again, she simply said, “My foot’s not listening.” Then she scooped her knee up with both hands and tapped it anyway.
I realized the limits of Julia’s memory on Ash Wednesday. She and I were playing cards and every time she looked up at me, and saw the ashes, she said, “Is it Ash Wednesday?” When this same question went into double digits, in one hand of cards, a sense of sobriety descended… Julia doesn’t know where the room she’s been in since January 10th is. She doesn’t know who the staff with whom she works every day are. On the way up in the elevator from an hour of boisterous game playing with 4 SJU pals, she didn’t remember they were there. She had just hugged them good bye. On the way to dinner she asks if it’s breakfast.
On the other hand, Julia can attenuate to mental tasks for over great lengths of time. Her reading and auditory tests are 10 out of 10 predictably. If she’s focusing on something continuously, it’s like the accident never happened. I watch her play the game Simon, where you follow a pattern of lights changing in sequence, and challenge yourself to how many you can remember. I’m amazed at her performance! It seems like it’s just when her attention shifts… then she loses what came before it. We were told of a similar patient who could follow a tv show intently, until the commercial came. Then he was lost. The brain is a tricky thing.
In the game “I’m Going on a Picnic” (and I’m bringing an apple, a banana, etc.) Julia can amazingly get from A to Z. We were playing with her grandparents the other day. When it came to “C” and I say crudite and my mother-in-law says, “Get a life” Julia laughs.
Her humor is very much there. Especially when it comes to taking shots at her dad. The other day we walked passed him in the hallway and she tosses her hand his direction and says, “This old chunk of coal…”.
Her leg brace slides down her leg and has to be constantly readjusted because she’s quite thin. When I told her how beautiful she’s going to look this summer in a bikini, she looks at me appreciatively and says, “Thank you for telling me that while I’m in a diaper.”
Sometimes conversations become mundane. When her dad was going on at dinner about rice, the different kinds, he likes them all, blah blah, she interupts and says, “You’re not a ricest.”
The last few weeks have been the hardest. Discharge planning has been complicated by the fact that Julia has 2 homes. I mentioned in my first post that her dutiful dad and I have differing styles. Those styles have come into some clash in terms of envisioning her future. As well, it is difficult to plan for her coming home and be at the hospital at the same time which have caused many tears. I was ashamed to be grateful for the snow day last Wednesday, then missed her all day. It is also not always easy to be at the hospital considering aforementioned differing styles. The staff have told us we have done exceptionally well compared to other divorced couples. The arrangement for Julia will be one week at her mom’s, one week at her dad’s, which is the decision that is most beneficial to her. Enormous thanks to our sister-in-law Jennifer who remained single-minded in her pursuit of keeping the bridges that have been re-built and nurtured between families intact, which is Julia’s greatest joy. Jen has been more of a Fairy Godmother than the regular kind.
I close by thanking you enormously for your prayers, love and support on this first leg of our journey. They say that writers base stories around a conflict because in conflict is where you see a character’s true colors. I have learned much about many others’ true colors, through this experience, as well as my own. I’ve also learned that believing people would be there for you and experiencing them being there for you are 2 different things. Next time I post Julia and I will be writing together from home!
Julia likes a band called Walk the Moon. We saw them together live at a Firefly music festival, where she met her boyfriend Colin, who, through this ordeal, along with his parents, has become family. I heard their new song on my way into the hospital last week and got such a surge of joy.
Cross my heart hope to die
Take this one step at a time
I’ve got your back, you’ve got mine
One foot in front of the other!