December 26, 2017 9:00 AM
2 weeks ago, I was at the shore, right now, visiting my mother, grateful that she didn’t wake me for morning mass. The clients I had to re-shuffle to make the 2x/mos commitment to visiting her, now that she’s 89, was my biggest problem. Blissfully oblivious was I to the fact that my life, as I knew it, was about to be over.
My Christmas highlights were Julia opening her left eye a little, now that the heavy sedatives are flushing their residue out of her system, and moving her right arm up and down. Julia and I have a silly, silent code between us of a shimmy. Before either of us do something brave, we shimmy to each other for confidence. Every day before I dropped her off at middle school and then high school – until she boarded at Westtown – she would get out of the car, turn to me and shimmy through the window. I would shimmy back as if to say, You’ve got this. When some family members were in the room on Christmas eve, she did this little shoulder wiggle. My niece Alyssa wrote a text saying, Julia just shimmied for me… my Christmas is complete!
The big news yesterday were results of her MRI. We had been waiting for this for prognosis. She has damage to the right frontal lobe, and the left back part of the brain where the impact caused a whiplash effect, ricocheting the brain diagonally from corner to corner. In between those 2 spots are pathways that are “inflamed”. This is to say that they are metabolically effected (whatever that means) and, cellularly, can go in either direction, better or worse. The take-away is that they are potentially “recoverable” through rehab. There is no stroke or ischemia (lack of blood or oxygen) so regeneration and recovery can not be ruled out. Thank God for that!!
The damage at the front and back points of impact are supposedly permanent. The damage in the back effects her field of vision. The damage in the front effects cognition, memory, and personality, but they don’t know how much. Permanent brain damage.
Words have so much power, don’t they? We throw them around like they’re invisible pieces of air. Little nothings that evaporate when spoken, without leaving a trace.
But they are so much more than that. I think someday we’re going to be able to measure the power of words. They get into the carpet and the drapes… They stay burnished on our souls much longer than a bruise on the skin. The big word in this neurological consult was recoverable. Recoverable is a big, fat, strong word full of hope and potential. Permanent is a word used by medical people based on their experience only. It does not take into consideration this particular patient and the strength of the network of love and support around her. They do not know you and the strength of your prayers and positive energy. And they do not know Julia and the strength of her hope and will. For every “First Time” of anything there is impossibility before it. I believe, wholeheartedly, that Julia’s role is to open doctor’s minds in a way that they’ll go on to tell the next TBI patient, “We’ve seen people go on to recover from even what appears to be unrecoverable now.” Wouldn’t that be a legacy? Julia will love that challenge and roundly embrace it.
The next big surgery, when Julia is stable enough, is for her right leg which is badly damaged. Besides the fibula fracture and torn knee ligaments, severest risk is from an artery that is “dissected” which is to say it is shredded in a way that, every time she is moved, threatens a tear which would cause interior bleeding, which would not be good. The vascular team has wanted to get their hands on her to prevent this since she was admitted. The neuro team, and her brain, however, took precedence.
Watching someone struggle to move and respond to our commands can be heart-wrenching. I can’t imagine what it’s like to be trapped in your body, paralyzed to get it to do what you want. I watch her one eye, through the slit of her eyelid, dart back and forth as she struggles to connect her brain to her body. Sometimes she moves her lips, open and close… no words come. When they stick her over and over for endless IV’s, however, she is beginning to recoil from the pain. This, ironically, is what we’ve been waiting for. Because it means CONNECTIVITY between her mind and her muscles. This is what we are looking for now more than anything.
A dear friend of mine and former BC classmate named Dan, whose battle with illness and death at 27 changed my life, has a sister who is a Psychic-of-sorts. I am skeptical, as many of you are, about the garden variety psychic who panders fraudulently for money. This woman, Mary Liz, is gifted. Her connection to “the other side” is eerie and awe-inspiring. As far as the future is concerned, she said Julia would go on to live a different life than we expected but a significantly meaningful one. As for the purpose of this, she said it was for connectivity and healing.
As connectivity between people goes, Julia is a bridge-builder. Just a month or so ago, Julia told me she found and old journal I had given her for her 10th birthday. I hadn’t remembered it but she said we were going back and forth with the book, writing questions and answers to each other. She said I had filled it with writing prompts like, “What’s it like to be 10?” (Ha) She said there was a “Greatest Wish” prompt for her which she had written beneath: “For my parents to be friends.” Not to get back together. To be friends. Every other scenario in all the books I read about how to love a kid through divorce never presented themselves. Not one. Julia, in fact, is oft heard saying, “I’d rather come from 2 happy homes than 1 unhappy one.” The only times I was stumped and stymied was the first couple of years when both my kids would ask me to go to my in-law celebrations. “But why can’t you come with us?” As parents, a special kind of pain is when you can’t give your kids what they want.
After the raucous, uproarious Christmas Eve gathering at the hospital concluded with the last of the “Goodbye and I love you” hugs, with the last of some 25 of my in-laws, and it was just she and I alone, I smiled our secret smile to her. “Did you like that… Maestro?” And I swear her little fingers moved and wiggled, attempting to curl around my hand. Just like when she was a baby. She hears us. She wants us to know that she hears us. She is co-creating all this connectivity of which you and I are part.
I can’t tell you the groundswell of support that has erupted from corners far and wide. The outpouring of love from the most obscure places has been nothing short of stunning. If I knew the number of people actively praying for Julia I’d guess realistically it is in the thousands. College campuses, whole parishes… and lots of them. Unless you’ve been in my shoes, you can’t imagine what that feels like. To be at the center of a vortex of such grace and abundance… It’s like I’m looking at the human race in a whole different way. And all I see is goodness.
Julia formed connections with people that were more than an inch deep. Even if you knew her peripherally. Her love for and genuine interest in people and their lives bonded her to them the way you are with that old friend who, no matter how much time has passed between you, you always pick up right where you left off. Those are the kind of soul-connections that outlast distance and time. Julia was always looking to learn from and about people so those connections came naturally. As her Writing teach put it. “Julia was like an octopus… and the places where her tentacles touched were not small spaces.”
There’s a web that’s growing around her and you’re part of it. Just by reading these words and empathizing with us. That generates energy in you that you take out into your own life. And who knows who you touch with it and how. Not to mention the fact that reading the comments on this site is like pulling my car up to the gas pump. It is literally part of the fuel I go on to high-step it through the day. We’re all connected. We are all connected. In sleep, as in her wakefulness, Julia drew and draws the loveliest people to her. If you were in her orbit, you were special too. And through this experience I feel like we’re all getting more special! Lol. She is the rising tide that raises all our boats.
Mother Theresa was being interviewed by a radio DJ in Chicago many years ago. The formerly jaded DJ was so impressed and moved by her, he asked her, after the show was over, what he could do to help her. She declined saying dedicating the air time was enough. He pressed on saying no, he really wanted to do something more to help her mission. She said, “If you really want to help me, go out on the streets of Chicago tonight and convince someone they’re not alone.”
So… err on the side of connectivity. People have a desire to be known soul to soul. Get past the big, stupid, external questions that satisfy people who ask about our lives and take an interest in something deeper. Maybe not what they do but why they do it. What part of their work really engages them? Would they do it if they didn’t get paid? What makes them most proud about their kids? And then remember what they said and ask about it the next time. This is how we connect in the way Julia connected. And remind each other that we’re not alone.