My brother Bruce was a brilliant scientist. He had a perfect score on the Science and Math section of the SAT. He was a champion college speaker. He was the leader of the student movement at his small college in Billings in the 60s.
He went on to have a fantastic career. He was a Deputy Director at NASA where he procured super computers for NASA’s Ames Research center. After he left NASA he worked at Cisco and then at Rack Systems where he successfully opened their China office.
7 years ago, Bruce had a stroke. At first, it seemed like he was going to be ok – he was at the hospital in just 15 minutes after having had the stroke. He was awake and being given what seemed like good care. He was talking, joking with the nurses and family, and things seemed like they would be ok – albeit with some work needing to be done on whatever loss he would experience because of the stroke.
But then one evening at the hospital he had a massive brain bleed on the right side of his brain. Without going into all the details, it was decided that they would operate to save his life even though the chances of recovery were poor. When Bruce finally woke up out of the coma, it slowly became clear that there would be no real recovery.
Denial is a powerful force – it is probably the most powerful force in human relations. When Bruce first woke up, we all had optimism and hope that there could be some reasonable recovery. Would he walk again? We had that hope. Would he talk? We had that hope too. Certainly, there would be major loss of function, but, still, we had faith. As the years have gone by all that hope has faded. Denial, powerful though it is, is slowly broken down by reality – like rain eventually wearing down a mountain.
Bruce knows who we are. His good arm is atrophied now, but early on he could write your name on a piece of paper if you put it in front of him. He could add two numbers together as well. But he doesn’t have the ability to answer yes/no questions.
In many ways, this is the hardest part for us, because it means that there is no real communication. It is through this that I have learned that the fundamental building block of communication is, simply, being able to answer “yes” or “no”. Without that, there is no communication – at least the way we normally think about it. Even so, Bruce can say my name, Mike, in a very low whisper when I lean in and ask him what my name is.
When I visit, I always stay in the city. I find I need a place of my own to find balance after a day of being with Bruce.
I walked down the hill Sunday morning from my hotel to buy a new blanket for Bruce’s Birthday. I was at Macy’s at 10am but realized that didn’t open until 11am. So, I found myself wandering around the downtown area to kill the hour.
As I walked around, I took note of contrasts in this “City by the Bay”. There is a huge skyscraper going up in the middle of the financial district. I walked toward that and eventually ended up at the base of it – looks to be at least 60 stories tall.
There always seems to be lot of construction in the streets in this city as well. I noticed that the street was totally torn up in front of the BVLGARI store and I found that to be a fascinating contrast, so I took a picture of it and painted it in my hotel room later that night.
When Macy’s opened, I was able to buy two nice quilts for Bruce as birthday gifts.
We are celebrating Bruce’s 69th Birthday which marks the fact that he has lived 7 years in his current situation. He has two different Asian caretakers who seem to do a reasonably good job caring for him although neither one of them can speak a bit of English.
I show Bruce the two blankets and he seems to like the fresh smell and the softness of the cotton fabric. I touch it to his face, so he can smell the freshness and feel the softness but, then, his caretaker for the day, Mr. Wu, momentarily freaks out because he thinks I’m putting it on Bruce and he’ll be too hot. I appreciate that he is protecting my brother, but it is disconcerting that I can’t explain that I’m just having him feel and smell the quilt and am not going to leave it on him.
Other than the occasion kerfuffle like this, my visits with Bruce follow a certain repeatable pattern now. I tell stories while Bruce alternatively listens intently or fades off to sleep. I also play music on my iPad. We work our way through most of my Spotify Playlist. Sometimes I sing along, karaoke style, and Bruce seems to appreciate that. He looks very intently at me while I sing along with Erin Rae and the Meanwhile’s– “Playing Old Games” or Tom Wait’s “Long Way Home”.
I tell Bruce a few old family stories. For instance, I tell the story I’ve told him many times, of his 10th birthday – how Uncle Don came over and we made a huge deal of his birthday celebration. He had a new kite which was probably one of the gifts and he flew it up into a very strong wind. It went straight up as it launched until it was way up high – unbelievably high. It seemed almost out of view… And then the string broke. We ran and ran to find it where it had fallen, way over by the East School from where we were living in the old Johnson house. When we found it, the back bow was broken from the fall, and we gently carried to home, hoping to repair it.
I share pictures of the family, and he seems especially interested his grand nephews and nieces. He focusses very intently on the videos of Tristan and Elliot jumping on the trampoline and the pictures of Mia and Diego utterly fascinate him as well.
I tell him at one point, that I’m proud of him – and I truly am. He has shown a commitment to life that is astonishing. He has never given up fighting to stay alive through all the challenges and disability he ended up with from the brain bleed.
Oh and by the way when I said before that it is hard to communicate with Bruce – well, I’ve changed my mind about that. I think it is easy to communicate with him. You do that by hugging him and rubbing his shoulders and giving him a back rub. We speak the language of a brother who loves his brother who can’t talk anymore with words.
I was leaving on Monday but had a couple more hours to spend with Bruce mid-day before I had to catch my flight. Bruce was sleeping most of the time I was there on Monday. I went out back and said a prayer for Bruce with the city off in the distance – gleaming in the 70-degree sunlight like the proverbial “shining city on a hill”.
I could have forced Bruce awake when I was leaving to say goodbye, but he seemed to be resting so peacefully, that I decided to just take a picture of him and say my own quiet goodbye to my brave sleeping brother.
It wasn’t until the next day that I realized that he was smiling as he dreamed and that gave me the title for this post as well as the idea to paint this picture of him.
Bruce always had a wry sense of humor and would get this slightly bent grin on his face whenever he was getting ready to laugh and point out some pretense or hypocrisy. Looking at Bruce’s situation and this wry smile makes me think of the Tony Bennett song “The Shadow of your Smile”, written by Paul Webster and Johnny Mardel:
Look into my eyes
My love and see
All the lovely things You are to me
Our wistful little star
Was far too high
A teardrop kissed your lips
And so did I
Now when I remember spring
All the joy that love can bring
I will be remembering
The shadow of your smile
Note: According to the CDC, strokes kill almost 130,000 Americans each year-that’s 1 out of every 20 deaths. On average, one American dies from stroke every 4 minutes. Every year, more than 795,000 people in the United States have a stroke. About 610,000 of these are first or new strokes. Do what you can to avoid having one.