WARNING: This post is really long. It’s a friggin’ tome. Enter at your own risk. It’s in two parts. The first is about trouble and recovery. The second is about the internal workings of an extraordinary place.
TROUBLE & RECOVERY
It was Saturday afternoon. Chris was cleaning the basement. I was lying on the bed, reading a book called Amish Grace, about the incredible ability of a group of Amish people to forgive and embrace the family of the guy who had mowed down their daughters in a one room schoolhouse.
Suddenly Chris burst into the room with a look of terror in her eyes.
“Something’s weird and wrong – really wrong – with my right foot.“ Her foot started to shake uncontrollably, then her hand and arm, and then everything went haywire.
I called 911, grabbed some pillows from the bed, and eased her onto the floor. By this time the seizure was in full throttle, her eyes rolled back into her head, her body shaking, mouth foaming, her mind somewhere else. It was horrifying, but gradually it loosened its grip, and she began to come out of it. The ambulance came and took her to the Martha’s Vineyard Hospital.
Our friend Helen was one of the ER nurses. They got her stabilized, the doctor came in, and they wheeled her off for a CT scan. The results came back an hour later: a tumor in the lining of Chris’ brain.
The ambulance to Boston – which I followed in my car – set a wicked pace to Mass General. Another CT scan and an MRI. The diagnosis was made: a Meningioma about the size of a walnut in her frontal lobe. The very best brain tumor a person can have – almost always benign, and very treatable, but a serious brain tumor nonetheless. After an evening in the Emergency Room they settled Chris, full of anti-seizure medication, in a room to wait for surgery to remove the tumor.
Once we had a chance to gather our wits, we realized how glad we were that I was there when she had the seizure, that the diagnosis was so swift and definite, that we were in the very best place we could be – Mass General, one of the great Harvard teaching hospitals, a place where they do these surgeries every single day.
And glad that it was all going to happen so quickly, and be done with, and she could jump right on the road to recovery.
It didn’t happen quite like that – but close. There were several postponements due to other emergencies.
The postponements gave Chris too much time to think. On Monday it had been “I’m finally gonna get the shaved head that I’ve already wanted due to my perennially bad hair” and “ Brain surgery: I need that like I need a hole in my head”. Not to say that she wasn’t scared (she was and I was) but she was, you know, she was ready to go.
By Tuesday morning she was thinking about all the things that could go wrong. Plenty could. She needed to get this over with, and did.
The surgery was fully successful. A post-operative MRI showed no trace of the tumor left, and no damage.
The doctors had led us to believe that her brain might be a bit scrambled, and due to the location of the tumor her right limbs might not work too well, at least at first. Her brain was not scrambled at all; she was weary and weak but 100% there from the moment she woke up. Her right arm is mostly fine; her hand and fingers have a bit of coming back to do. But her right leg is going to take some work: it has full feeling, and she can lift is somewhat, but she can’t really move her foot, or her toes. The road ahead will be long and hard.
But she’s ready for it. Today, after nine days here, she will move to Spaulding Rehab for 2-3 weeks to work on her leg and foot re-hab.
We spent Thanksgiving in this hospital. We celebrated our good fortune, and we felt full of forgiveness, like the Amish, except we have nobody to forgive. This is just the way things go. They can change in a heartbeat. Know what I mean?
Spending most of my waking hours for more than a week here, I had to poke around my surroundings and ruminate. There’s a lot to experience. I now understand why they make TV dramas about hospitals. There are endless stories and intricate workings.
Early on we went through a surgeon saga. A young guy, the Chief Resident, very skilled at this particular operation, was scheduled to do the surgery. Everyone said the guy was crackerjack. But my doctor father and his doctor friend in Boston weren’t satisfied. They wanted a more experienced surgeon, and they had a certain senior fellow in mind, who agreed to look in on the case and get back in touch. Meanwhile, the plan was that Chris and I would talk to the young guy and express our concerns.
So I had this whole little speech rehearsed: “I remember when I was younger and people would question my experience when I knew I could ace the job and I would wonder to myself, “How’s a person supposed to get experience if nobody gives them a chance” and how badly we felt even questioning his abilities and blah blah blah. It was bound to be awkward, but this is 2010 – you get to say what you want, and this was about Chris’ life, and making the best possible choices about this new obstacle.
I needn’t have rehearsed. Mid-morning they both came in together. The young guy looked kinda old and the old guy looked kinda young and they both seemed very nice. After they asked Chris how she was feeling and chatted for a few minutes, the senior guy said, “Okay John and Chris – here’s the deal: we both want to do this surgery. So we’re going to do it together. Okay?” Sounded pretty good to us. Awkwardness averted. Skill and experience. Two for the price of one.
Talking about price, think about the money: ambulance to MV Hospital, MV Emergency Room, ambulance to Boston, Mass General ER, CT scans, MRIs, 10 days in the hospital, intricate surgery, post-operative care and follow-up, who knows how long in re-hab, etc. How much is all that going to cost? $100,000? $200,000? $300,000? Don’t know. Could be more. But I don’t even have to think about it, and that’s good, because I have other things to think about right now.
Nobody should have to think about it. At times like this I am particularly grateful for the superb South Mountain health care plan and particularly pissed off at those pathetic and way-too-large elements of our society who would deny this kind of care to many. It’s unthinkable, isn’t it?
Anyhow, we feel fortunate to be here. It’s an amazing place. Mass General is kind of like Rome – vast and varied and byzantine. How could it possibly work? Every part was designed at different times by different people, all of whom were trying to predict the future and didn’t have a clue or a chance. Within the various highly tailored spaces everything gets constantly adapted to a new present. Every day tinkerers are continually figuring out how to keep it working and how to incorporate the new with the old.
There’s constant speculation about when things are going to happen but nobody really knows. Too many variables – the organism is so complex that that all bets are off. But when it rolls over just a smidgeon, the legions spring into action and everything happens more or less the way it’s supposed to.
It’s really just a glorified repair shop, kind of like the service part of a car dealership. There’s this place where you do paperwork – the reception desk – and the parts department – the pharmacy – and then there’s all this shop space where things get fixed – people, in this case – and all these tools and equipment placed wherever they’re needed and wherever they’ll do best. Everything in the “shop” is clean but totally without aesthetics or concern for daylight or health (ironically). It’s all plain, practical, and antiseptic with one big difference from a repair shop – the people provide all the warmth.
And plenty of it. There is so much soul combined with so much competence that after awhile you just want to roam around and hug everyone. The doctors are fine – no, better than that – and the service people are mostly great. But it’s the nurses that shine. They are the heart of the organization, the connective tissue that actually makes patient care and healing work.
The Emergency Room is the central bazaar – the most active part and a constant buzz of random connected events. Around the ER there is a warren of hallways lined with stretchers. Some of these have fully clothed rough looking characters with dirty boots asleep on them. They look like homeless guys. I think they are. They’re probably guys who worked here and fell on hard times or just guys that everyone knows and tolerates. If it got out of hand someone would blow the whistle and stop the practice, but for now it works – again, it’s such a complex and flexible organism that it has room for almost anything – to a degree.
The technology – ever-changing – is futuristic. The food – ever not – is 1956. The bread is still white, the vegetables still canned, the meat still stringy, and the mashed potatoes still runny. The menu description for Grilled Cheese Sandwich says, “A simple grilled sandwich made with American cheese on old fashioned white bread.”
The waste is colossal. Just as an example, the exam gloves that everyone wears are in dispensers hanging on the wall in every room. The dispensers are stacks of Kimberley Clark cardboard boxes on their sides with the middle torn out – just like the standard issue old Kleenex boxes used to be (maybe they still are – I don’t know). The gloves are just stuffed in there and at least half a dozen times I’ve seen a nurse or doctor or orderly pull out a pair and another pair or two will come out too and fall to the floor. Guess what happens to them next. Are you telling me they can’t figure out how to make a dispenser that lets them go a pair at a time? Often whomever is going for the gloves goes, “These dispensers are so ridiculous.” But they have other things on their mind. Anybody out there have a good simple design solution?
Then there’s the food and flowers waste. If somebody figured out a system for collecting and composting all this, they could fertilize half of New England. Or grow food on the acres of roof right here.
As I hung around, day after day, waiting, and observing and chatting, it occurred to me that if you really want to get a full picture of Boston you can forget all the sights and just hang around Mass General for a few days. Everyone – I mean everyone – is here, at some time or another. It’s an extraordinary congestion of all types. Mostly people walk fast and talk intently. It’s also the largest non-government employer in the city, with 19,000 employees. Founded in 1811, it’s the oldest and largest hospital in New England.
One day I got on the elevator with two uniformed guards from the New Hampshire Dept of Corrections. Between them was a goofy looking guy in handcuffs and a leather belt with one of the guards’ fingers looped through it. We started alone on the 13th floor (hospitals have them even though hotels don’t) and stopped at every single floor going down. By the time we got to the bottom floor there must have been 16 people in there – the elevators are big, you know, for stretchers – and it was one motley looking crew of people – every color, every form of dress, every language, every accent. The two guards, stuffed into the back with their prisoner, looked more comfortable with him than the rest of the people – three New Hampshire hicks in a foreign country.
Speaking of clothes, when did the dress code disappear in hospitals? When I was a kid you could tell who people were by their uniform. Doctors had long white coats with button-down shirt and tie peaking out at the throat. Nurses wore dresses and little hats. Remember candystripers? Hospital volunteers who wore red-and-white striped jumpers. No more – now it’s an amalgam of style and it looks like everyone is wearing whatever they feel comfortable with. Fleeces over scrubs. Clogs and sneakers. T-shirts. I like it.
You lose your sense of time in a place like this. It’s pulsing all the time – 24/7 – and day and night are not that different from each other. The staff bustles, but for the patient or visitor it’s just a lot of waiting and waiting – it’s like wildlife observation . . . or hunting.
During Chris’ surgery I spent a long time in the Gray Waiting Room for the Families of Surgical Patients. I can truly characterize it as a Great Thing. You register when you get there and you tell the staffers when you come and go. They notice where you sit, and write down what you’re wearing (so they can find you), and they probably write down other stuff like “John Abrams, husband of Christine, semi-disreputable, mouths off a lot, etc. etc.” They track the surgery by computer and give you periodic updates. They remove some of the mystery and uncertainty. A tremendous service.
While Chris was in the recovery room waiting for the anesthesia to wear off her lead surgeon found me there, took me into a comfortable little consult room, and described the procedure and the results. It was as if he was telling me about a sporting event – he was proud of the job they’d done and thrilled with the outcome. He was relaxed and exultant at the same time – the game is over and you’re dead tired but the glow has not yet worn off.
It’s not a game; it’s actually an assault. She came out of there bludgeoned, like she was beat up by a gang of thugs. She was, but it was by a team of experts with only her best interests at heart.
So that’s a little piece of the way this place works. I’m impressed.
And as for me, aside from spending a lot of good time with Chris, I’ve had a chance to do some serious walking around Boston. I haven’t been in an automobile in 8 days – that’s probably an all-time no wheels record for me!!
I am so glad and thankful that Chris’ surgery was successful. Preston and I send thoughts of love and concern to both of you.
Preston was at Spaulding Rehab after a stroke more than a decade ago. I thought It was great. Preston only wanted to get out of there.
Thank you for letting us know. As you say, life can change in a heartbeat. The older I get the more I am aware of this. Your blog is a great way to keep your friends informed.
Much love, Connie Willilams
Hola….what an experience! Thank the gods you were there….best of love and luck for a full recovery….I’m with Chris on the “bad hair life” feelings…..thank the gods you also had great insurance. One of the most poignant things Obama said on the campaign trail was…that we all should have the same coverage as a US senator..that we were entitled to it…I’m in NYC, rented a place , we move in in 2 weeks..yesterday morning I awoke thinking about health care coverage and Obama’s words and going thru the ordeal of moving my health insurance to NYC..at any rate You and Chris are in my thoughts and prayers…love and luck, Mark
Thinking of you. That’s often true, but now in a whole new way. Glad for the outcome. And post wasn’t really that long after all.
Wow, John! What a story! I hope Chris is recovering well. Thanks fit sharing ya’ll experience with is. All my best is with you both!
I’ll be thinking of Chris and all the hard work to get her right side back… thank for telling this story… with Chris’ agreement John, I hope you send it to the Boston Globe, it would make a wonderful feature or magazine piece… love to Chris….
Hi John, Thanks for the update, Marney had told me. Our best wishes to Chris. We spent two weeks up at Mass. General and I know exactly what you speak. Not a place you want to be but better there than any place else when you need good medical care. There are a lot of leaks in our health care life boats. I think you are right, everyone is so busy trying to save lives that they don’t see or don’t have time to fix the leaks. Lets hope lots of people like you who are able to see the connective tissue and importance of even our small actions are given the chance to plug the leaks and even improve the ship before it sinks! Take care of yourself, Richard
You touched the core, John. Thanks for taking the time to write and for sharing. It strengthens, deepens and connects us all. Alex and Dale and I will be celebrating Eric’s 61st this Saturday. You and Chris will be in that circle of friends that we’ll call on to help us blow out the candles!
Thank you for sharing this, John. So glad to hear Chris is on the mend. I look forward to your new initiative on the Greening of the Health Care System!