“There should be no boundaries to human endeavor. We are all different. However bad life may seem, there is always something you can do, and succeed at. While there’s life, there is hope.” Stephen Hawking
Thanks to Abraham Lincoln (and his mother) for having a birthday that eventually became a holiday, which Maki and I took advantage of yesterday by catching a matinee of The Theory of Everything. If you haven’t seen it, just watch the trailer and see if you can keep your eyes dry.
Of course it is a remarkable story and the lead acting was phenomenal. We all know Stephen Hawking is one of the great geniuses of our time, in spite of his disability. The movie shows him starting out young and healthy as his body quickly degenerates with ALS, while trying to have a normal family with a wife and three kids. He overcomes the doctor’s initial prognosis of a mere two years to live, and continues life as a man of huge ideas who is able to communicate them beyond his physical ability…and is still working, let alone living, at age 73.
It was an inspiring film. Hope above all. A good attitude and the love of a family getting him through the hard times. Overcoming the most daunting odds. But I left the cinema completely exhausted. I felt exhausted for the wife, who stood by his side as she tried to raise babies and maintain a normal home around him. I took it too personally, as I am beginning to realize I often do these days: always trying to identify deeply with something that may not even be close to my story. Always wondering what I can take away, what I can learn. I thought about how charming Vernon can be on a good day, even though his brain is damaged. I thought about what a great thinker he used to be. (Ok, maybe not a ground-breaking physicist, but definitely controversial in a way I think Dr. Hawking would appreciate.) I thought about how much hope she had for her husband in the beginning and how caring for him and the household became increasingly difficult to manage over the years.
Its funny how two people can view the same movie so differently. Maki was inspired and thoughtful. I was tired and sad.
On the way home, Maki asked me why I was still crying. I said: “I just felt that it was so much like our story.”
He said: “What are you talking about? Its completely different!”
“How is it different?”
“Vernon is getting progressively better, where Hawking was getting progressively worse.”
I was startled by Maki’s words. Did he really still think that? A better question was when did I stop thinking that? I must have let these past few weeks take more out of me than I had realized.
Oh, I know, I know… Hope Springs Eternal. I’ll come back to it, maybe even tomorrow. But the idea of doing this for another 50 years doesn’t feel very invigorating to me. I obviously missed the point of the film. I told you I am taking things too personally.
I don’t know where this will all go. I don’t know how completely Vernon will recover. The doctors have told me the most recovery of a traumatic brain injury takes place in the first year. We are rapidly reaching that point and it still feels pretty slow to me, though I also recognize that in the eyes of others, he has come very far. Maybe there is a freedom in admitting I don’t know if he will recover much more than he already has. I don’t know that either. I guess I don’t have to.
I also don’t know if, like Hawking, Vernon’s greatest contributions to this world, have yet to be made. He deserves the chance to find out anyway.
Last night, I started this painting. She’s not anyone I know. It’s not supposed to convey or mean anything. But I’m sharing it because she looks exactly how I feel. She looks tired. She doesn’t look like she understands anything either…but she’s trying to.
And then there is this:
“The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.” —Stephen Hawking
Though Vernon returned to the Care Home with a few extra PT challenges and some eyebrow-raising bedsores, he is still in one piece. And today I could see that he has turned the bend mentally once again. Whereas he couldn’t remember my name all week, even coming up with such stabs in the dark yesterday as Melissa, Heather, and Debbie (No, I have no idea, either), we were back in the realm of the familiar today. I never thought I’d be so happy to be called Vanessa and Synnøve. One day, I’ll do a proper study on how men categorize important female relationships deep in their psyches. But for now, I’m happy to think that my name might be next on the list.
As of tonight, Vernon has been sent back to Mesa Verde. This round took a lot out of him and he still hasn’t returned to the Vernon of two weeks ago. I have been hearing stories of other brilliant men (without Brain injury) who were thrown off mentally for months because a UTI got the better of them. So we crawl slowly out of this space, believing that his mental and physical setback is only temporary. The doctors think that getting back to a more normal environment will be better for him, that he will be less likely to contract MORE infections, as he won’t be prodded and poked every couple of hours. And if there is a need to return to the hospital, his care home is only a couple miles away.
A couple of weeks ago, when I asked for suggestions for Vernon’s birthday playlist, his sister Vanessa sent in ELO’s Mr Blue Sky. She mentioned the vivid memories of their sitting around their childhood lounge, listening to this song on repeat.
It came to mind again today as I took a coffee break and the winter sky was blue as can be. Shocking how just getting outside and lifting my eyes up can make a difference. There is ALWAYS something bigger than my little world. Always something more. In the course of my travels through the hospital halls this morning (an elevator trip or two, sitting in a waiting room) I overheard two stories of people preparing to say their last goodbyes to a beloved parent and another story of a possible overdose death. And I’m sure there are many more stories like that every day inside those walls. As I walked out into the sunshine of the cafe patio, I remembered to count my blessings. Vernon is leaving this place. That is a GOOD thing. When I start to feel sorry for our family or overwhelmed because we seem to have just taken another long-cut on the recovery journey, I am reminded we still have HOPE. We still have a future. Vernon still has hope and a a future. It doesn’t matter how he will get there, but that he will! It doesn’t matter how we will function till then, but that we will.
“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.” —Rabindranath Tagore
Vernon is still in the hospital, though I was told he would be transferred to a less acute unit sometime today. When they are sure things are stable, he will return to Mesa Verde, either tomorrow or Wednesday. This particular infection and the treatment to eliminate it has truly worn him out. A week in, and he can still barely open his eyes for long. He still seems more confused than he did two weeks ago, but I’m told that this too will pass. Both kids were out of school all last week with the ridiculous flu/cold making the rounds, and they only didn’t want to open their eyes much either. At least Vernon isn’t complaining…can’t say as much for our dramatic 4 year old. My brother has 4 young kids and he says they have a 75% rule: that as long as 3/4 of the 4 are happy, its a good day. We are slowly getting back to our own 75% balance as of today. After this week, I pronounce a personal ban on sickness in the Adams family for the rest of the year!
There have been some important perks of being at the hospital, though. One thing I don’t think I’ve mentioned is that Vernon was able to get a Swallow Study (or Swallow Test) —which his new Speech Therapist at Mesa Verde had suggested I order even before Vernon was sent away for treatment. This is a test that can only be done in a hospital radiology centre. In this test, the patient is asked to eat or drink small amounts of various liquids (in diferent consistencies ) or crackers, all mixed with or coated with a barium powder that the x-ray machine will be able to track as he swallows. Speech therapy doesn’t only have to do with words and memory but also the function of the mouth and throat. Vernon is still fed by a g-tube, though he does try some lunchtime foods on a good day. His Speech Therapist believes that with this test, she will be able to more clearly help him improve, as she will have x-rays of his throat and his ability to swallow. He is still unable to drink un-thickened liquids and breaks into extreme coughing fits if things don’t go down well (which is frequently the case.)
The problem has been that once the swallow study was ordered, Vernon was understandably anxious about the unknown-to-him technicians trying to put strange food into his mouth. His eyes remained closed, which didn’t help matters, but he was sure they were up to no good, and batted them away, absolutely refusing to participate. They tried several days in a row until I suggested I be there for the procedure. Perhaps having a familiar voice nearby would help calm him down.
It wasn’t a perfect test, but I think they got 3 out of 5 consistencies down the hatch and gave them something to work with. It was not unlike my experiences earlier this very week, trying to trick Justine into getting a bit of baby-tylenol into her fevered body. Could this extreme stubbornness be genetic? Only a longtime companion or a parent can get away shoving graham crackers into a loved one’s mouth. It wasn’t as bad as it sounds, as there was also a lot of bribing and reassuring involved. I was just glad I’m an experienced mother at this point in my life or I might not have had as many tricks up my sleeve. It was nice to feel I could finally be of some help this week, rather than just sitting nearby and answering questions about his history. I got to wear a fancy radiation vest, too! Check that off the Bucket List.
“Make friends with the angels, who though invisible are always with you.” Saint Francis de Sales
We are 6 days into our Hoag Hospital Tour. The latest is that Vernon will be sent back (after Dialysis) sometime Monday afternoon. I wish his recovery was going more quickly here, but then, I don’t know what to expect, so for all I know, he IS doing great. The staff seem to think so, but they only met him on Monday at an uber-low. As a novice caregiver, I still can’t shake the idea that he is only as good as his last best self. Time to release the perfectionist in me, perhaps? One proactive thing I can do is look for the angels…or as Mr. Rogers would say, “the Helpers.
Not only has Talar been my personal hospital guide all week (paying for my daily parking fees and treating me to lunch and coffees, not to mention the “inner circle” valentine chocolates from the case-management staff-room) but her husband, Patrick, who happens to be a chaplain-at-large, paid a visit. What a Dynamic Duo they are. They both came together to pray at Vernon’s bedside and offer him some spiritual care. I got to have lunch with them too and hear their love story, how they met in Norther Iraq years ago. I could fill a blog up with the richness of their unexpected story. When you get better, Vernon, they have promised to come tell it to you in detail. Look forward to it…its worth the wait!
Another sweet surprise at this hospital was that our friend Amanda Girard was a nurse on his very floor. She came in to bring Vernon a smile today. It’s been comforting for me to see her bustling around the ward as well, when I catch a sighting. I know on a good day, he has remembered playing football (soccer) on the weekends with the local crew. She was one of them. Seriously, what are the chances?
This is the amazing Dr. Close, whom I hear from everyone, is the BEST Vernon could get. She has called me at home every night and sat down for consultations a few times in person. I won’t write too much here, but she has informed me of a few things about his former care, according to the records she has received, that imply some things about his former care that I was not aware of. My darker side wants to scratch my claws out of anger, but I also know that some of this could be down to miscommunication and my own naiveté. Knowledge is power though, and I will be doubly vigilant from here on out. Let’s just say I am thankful to be moving to a new care home, where we can have a fresh slate.
Today, the most beloved of Vernon’s personal angels came to visit. Who else: The Maki! (I was trying to take a shot of this local Crystal Cove photo on the hallway wall, but Maki had different ideas, jumping out in front of it. Can’t be mad at that smile though.)
He was terribly impressed with how posh the hospital was, even though it was a bit of a ghost-world today, so empty of the week-day busyness. As long as they have BBQ potato chips and Dr. Pepper in the cafeteria, he’s a happy kid. Sadly, today was the first day that Vernon didn’t seem to know him when left to his own devices. Of course he remembered once we told him. As for myself, when I asked if he knew my name, he said: “Wife!” After some of the other things I’ve heard him call me these past few months, I was totally satisfied with that answer. In fact, it’s possible to believe that he quickly went through the other jumbled names in the “significant relationships” file of his brain and realized “WIFE” was the best/safest answer he could find. Brilliant and efficient!
Angels don’t always need to take human form in order for us to recognize them. I was surprised to see someone had placed a big teddy bear under Vernon’s arm overnight. Now, he is a grown man, so it could be seen as a little silly, but it gave him something to hold on to instead of pulling at all his wires and catheters. And why not a teddy bear? It just shows we haven’t looked under every stone quite yet.
These fragrant birthday flowers and a small hedgehog from the gift-shop (chosen by Justine) may not be angels, but they are reminders that people care about him. Next to these, there is a big birthday card, sent by his parents. He is never alone, even when none of us can be there in the room.
“We are each of us angels with only one wing, and we can only fly by embracing one another.” Luciano De Crescenzo
Midnight tonight will mark NIGHT 3 of our hospital stay. Will our medical pumpkin turn into a stagecoach? So strange to get exactly what you wish for. Someone said earlier to me today at the hospital: “With God, nothing is wasted.” Take that how you understand it, as I know not everyone reading this has a concrete faith. But I let those words sink under my skin because honestly, the past couple of days have been very complex emotionally to me. Hospitals are intense places. On the one hand, we are in the most beautiful facility I’ve been in. I am overwhelmed by the caring nature of the staff, getting exact information on Vernon’s condition as it changes, calls at home from the Doctor, and above-and-beyond social care, with guidance to Vernon’s future, even months down the line.
But these last few days have been emotionally challenging in unexpected ways. I suppose our body stores up the stresses of the past until we are able to release them. And being in a hospital with Vernon unresponsive (yes, he is getting better, but he is still very quiet and detached in his recovery) brings me right back to those three months last summer. Without discrediting those who have gone through worse, I can relate to small symptoms of PTSD emerging in this place. It has been easy to let my mind go to very negative places if I give an inch. But if I stay there too long, I start to drown a bit…or at least, I fear drowning in thoughts that might never end. I can only allow these moments of fear and grief to take over for moments because I still have a family to take care of…these kids are my lifeline in the end, you see?
I know Vernon will be better very soon. He will be back to the nursing home in no time. And we will have our insurance plan A. But wow, nothing is wasted.
That said, let us return to goodness in the land of the living, I love finding the bright things that keep us anchored. And truly, they keep coming. Yesterday, a birthday package came for Vernon’s birthday from Google headquarters. To all you font guys who had a hand in this, thanks for the tee shirt.
(Front and back below)
2o Billion Views? If I had a dollar, right? Well done, guys. And well done, Vernon for Oswald.
Quick personal note on this: I see Vernon’s fonts everyday. Noticeably Amatic and Pacifico. Just little weird reminders. For a quiet English guy, he seems to be everywhere.
His friend and colleague Dave was here earlier in the week, but he’s not the only one of his type designer circle that has been showing support. Ebon Sorkin, who has been helping with Vernon’s unfinished work behind the scenes (as well as his own work) sent a series of posters to print for Vernon’s wall. You don’t have to have a degree in Typography to appreciate their loveliness.
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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