A Failure to Care

I like big girls.

More importantly, and to the point, I love my wife. She is a big girl. Not plump, not thick, but big. Fat, if you prefer, or obese.

Even more importantly, she is human. She is worthy of respect and dignity regardless of her size.

She has a host of medical issues. Some of these treatable, but they won’t ever change. Some are barely treatable. Others not at all. All these things are part of who she is – a woman in her fifties who knows her body, diagnoses, and her life.

Healthcare is difficult. I know this. I have some training as a combat medic. I know that some aspects of it are harder, physically harder, with larger patients. I know this very well having been my wife’s full-time carer, especially during this recent four-month episode where she could not bear weight on her left leg much of the time. Even though I was there to help her, and fully committed to that, my first priority was to protect my back. In the end though, when one is being paid to provide care, I don’t care how hard it is – DO THE DAMN JOB! If you need help, get it.

Get over yourself and your attitudes.

Look around at the world. It’s well-documented that Americans are much larger on average than fifty years ago. But that is also only a change in distribution. There have always been larger people.

If you’re going to be a healthcare professional, or run a business that provides healthcare, you have to treat the patients you have, not the ones you wish you had. Or those that you *think* you have.

I have some advice on how to do this.

  1. Start by seeing your patient as human.
  2. Assume from the beginning that they should be treated with dignity.
  3. Treat. Them. With. Dignity.
  4. Start with ensuring they have agency in their own care, save in circumstances where this is not possible.
  5. Know that provision of proper care is not an inconvenience, it is your damnjob.
  6. If a patient suddenly screams in pain, STOP WHAT YOU ARE DOING.
  7. Ask what is wrong.
  8. LISTEN TO THE ANSWER.
  9. Trust that the patient knows their body.
  10. Change what you are doing accordingly.

Above all, apply your common sense and critical thinking skills. If a patient presents as having a broken femur that is being allowed to heal, assume they cannot stand or walk on their own. Assume that they will need assistance. Include this in your planning, that includes having enough staff to assist large patients. This all fits within the Hippocratic oath under “first, do no harm.” You should not make things worse.

When you fail to see people as people, fail to give them their humanity, you will almost always make things worse. We see this is in the stories and research that demonstrate the generally poor medical care Black woman receive. We’ve seen this in the LGBTQ community in the height of the AIDS crisis and every time some legislature gets the ideal to allow gay conversion therapy.

The goal of medical care, of healthcare, is to make people better.

That only happens when you treat them as people, regardless of size, skin color, gender, or who they love.

My wife has now been in surgery for two hours after a night and a day of searing pain. She faces weeks of rehab and a painful recovery away from home. All because the staff of a nursing home chose to ignore her humanity, agency, and knowledge of her own body.

They broke her femur through mishandling her.

And then they tried to say it was her fault.

All of this is after a week in the hospital where the first day was marked by staff ignoring her when she kept telling them to let go of the left leg, it it is the one that is broken. Her right hip turns out an odd angle, they look at that and assumed that is the location of the break. They don’t read the chart. They don’t listen. When I got there I made sure it was on the whiteboard, and she made sure the hospital administrator and the head nurse knew about it. Things got better quickly at the hospital.

But it still the same old thing. A failure to see the person, a failure to listen, a failure to know the patient.

A failure to provide care.

A failure to care.

A Eulogy for Richard Massa

“As I was saying in the last class….” This was a favorite way of Dad in starting the first class of the semester. It was a way of ensuring he had each student’s attention through a moment of questioning.

“What did I miss?”

Indeed, what have we all missed?

Richard Massa, Christmas, 2017

Richard Massa lived a life of passion. Not the passion that you see in movies or read in books where the main character wakes up to the excitement of life and starts climbing mountains, running races, or chasing adventure. Instead, my father lived full of passion for the life of the mind.

Dad related the following story during his remarks on the occasion of his 85th birthday:

Recently I was called for jury duty. During the questioning of the potential jurors, I was always the last to be called on. One question in particular was of interest. “Do you have a passion? What are you passionate about?” Almost invariably, the responses were about sports. Football. Baseball. The Cardinals. The Royals. And others, of course. When he got to me:

“Are you passionate about anything?”

“I try to teach passion.”

“I suppose they call you, ‘Mr. Passion!?'”

The judge said, “I wouldn’t go there. That’s Mr. Massa. He has a reputation for passion.”

Here’s the thing though. Growing up, I don’t recall a single lecture directed at me about passion. Admittedly, I didn’t move back to live with him until I was 16, so it might have been too late to have much real impact after short visits and summers between the ages of seven and 16. Unlike my sister, Daphne, I didn’t take classes from him or become a communications major. However, I do a recall number of lectures, monologues, and exhortations, all delivered with a great deal of passion. I probably assumed at the time that this was simply a device to gain my wayward attention.

I didn’t realize at the time that I was being given the roadmap for my life.

When I was five, Richard Massa took me camping, with the help of his friend, John Graves. This is an experience that is crystallized in my memory. The first, and only, time my dad took me camping. There are a number of images from that trip that I carry with me. Images from a section of wilderness in central Oklahoma. A little lake. A cliff. People jumping off the cliff. A water snake at my feet. Most of all, I remember my father waking in the night to shine a flashlight on two raccoons going through our food.  A moment of wonder for a small boy.  A moment of clear memory 52 years later. Camping was not his thing, yet another reason these memories stand out for me.

What boy remembers, the man becomes.

My father and I had the type of relationship that I think is pretty standard for his generation and mine. Not a lot of touching, not much in the way of chatting, or expressions of love. During Christmas 2016, when it came time for Melinda and me to leave, we were standing in the kitchen with Dad and Teresa. Dad said, “You were a good grandson to my parents, and you’ve been a good son to us.” I simply replied, “It’s been an honor, sir.”

If these had been our last words to each other, I would have been fine with that. They’re not bad words at all. They are somewhat formal and perfectly in keeping with who he was. They certainly reflected our love for one of another, a love that was never decorated unnecessarily. It simply was.

This was also true of his love for his lesser children, my sisters.

I kid, of course, because Daphne and Sara are marvelous people. Part of the delight of his life. They have done as he wished for them – pursued their own visions for their lives.

The true, endearing love of his life, his true passion, was, and remains, Teresa Ramirez Massa. They have been companions, friends, husband and wife, and most of all, equal partners. For nearly fifty years their marriage has been iconic in their devotion to one another and their uniquely powerful habit of communication.  A habit of communication that made their marriage what it was. A habit of communication that caused strangers to remark on how much they talked with one another when in a restaurant.

At their 40th wedding anniversary party, I told this story:

Richard and Teresa were walking in the mall one evening. It was a sweetly fragrant evening, and they were happily together.

Teresa said, “Richard, I’m kind of hungry”

He replied, “Yes, and I’m quite tall.”

It’s communication like this, and outrageously subtle humor, that made them such a strong couple.

Most of you knew Dad as reserved and somewhat formal. He maintained a professional distance in most spaces. He was keenly aware of his role as professor, church leader, and community member.  He taught me early on the importance of knowing what role to play in a given situation, and how to leverage the role to overcome doubt and nervousness. He was deeply private and held on to stories of his past so tightly we had no idea they were there. He shared many of them with us in recent years. If you thought he was special, or amazing, then you might want to at least double that. And double it again.

My extraordinary life is what it is because of his guidance and inspiration. It’s not the type of inspiration that seeks the name brand, the pinnacle of place, but instead it is an inspiration to be where the work needs to be done. I hope what I have done in life impressed him, and that he found it worthwhile.

That was the standard I strove for, the standard for which I expect many of you strove.

In one of his last emails, Dad quoted Dylan Thomas, and since the two of us discussed this poem a year or so ago, I read it to you now because he fought and raged against this day, until he knew it was time to fight no more.

Richard Wayne Massa was a man of immense dignity. If you knew nothing else about him, you knew this. He held on to his dignity every way he could in his last days and hours. Long past the point where I think most people would have traded dignity for comfort and ease. Not my father. He may have wanted to go gently into the good night to escape the pain, but not if it meant giving up his dignity.

Do not go gentle into that good night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.

Rage, rage against the dying of the light.

Richard Massa taught us to be storytellers. Stories are a vehicle for sharing light in good times and bad. Stories tell our histories, as families, as communities, as a nation. Stories help us tell difficult truths that others can better understand. More than anything else, stories are a way to share our values, our passions. So please, rage, rage against the dying of the light by sharing stories of Dad, let others know who and what he stood for, where and when he did it, and how he did it. But most of all, why he did it, for passion.

On Saying Goodbye

Two years ago at Christmas, my father and I said goodbye. Neither of us expected that he would make this long with kidney failure and an aortic aneurysm. He did though. And since then, whenever we’ve talked or seen each other, we never assumed there would be a next time. It looks though that I will be giving (and posting) his eulogy very soon. I finished last weekend and shared it with him, half expecting a revise and resubmit. Instead he expressed appreciation and thanks.

But now that the end seems very near, there is more to say.

This is the way it was when Mom died in 2007. We never said goodbye in the formal manner that Dad and I used. Instead, I built her casket as an act of love, in keeping with her desire for something simple and frugal. There was still more to say, even though I tried to say it all the building.

As Dad fades away, I can’t help but think of Walt Whitman’s poem, “O Captain! My Captain!” –

O Captain! my Captain! our fearful trip is done,
The ship has weather’d every rack, the prize we sought is won,
The port is near, the bells I hear, the people all exulting,
While follow eyes the steady keel, the vessel grim and daring;
But O heart! heart! heart!
O the bleeding drops of red,
Where on the deck my Captain lies,
Fallen cold and dead.

O Captain! my Captain! rise up and hear the bells;
Rise up—for you the flag is flung—for you the bugle trills,
For you bouquets and ribbon’d wreaths—for you the shores a-crowding,
For you they call, the swaying mass, their eager faces turning;
Here Captain! dear father!
This arm beneath your head!
It is some dream that on the deck,
You’ve fallen cold and dead.

My Captain does not answer, his lips are pale and still,
My father does not feel my arm, he has no pulse nor will,
The ship is anchor’d safe and sound, its voyage closed and done,
From fearful trip the victor ship comes in with object won;
Exult O shores, and ring O bells!
But I with mournful tread,
Walk the deck my Captain lies,
Fallen cold and dead.

Richard W. Massa has been one of key inspirations in my life, a guidepost. I don’t worry that I never measured up to him, or that I failed him in some way, because I know that both are true, but only in part. It is the nature of life to fail, to succeed, as it is rarely just one or the other for the entirety of one’s life. I know also that he leaves with some regret, regret for not doing quite enough. He set a high bar for himself. In truth, he need not have any regret. By all measures of value he had a successful and meaningful life, one that touched hundreds, more likely, thousands of students in positive ways as professor and mentor.

There is never enough time to say all that may be said. As my father passes, I will carry his memory and all that I learned from him, and tell his stories to any who will listen.

If I were a big developer

I keep thinking that something is missing in the national discussion about the wall.

If I were a big real estate developer, one with an imagination, I would not be wanting to build a freaking wall. It’s too simple, too unimaginative, and far too expensive for something that does not work and is too easily defeated by a ladder or tunnel.

Let’s think big.

Really big.

A two thousand mile long wall does little but impede wildlife and take land from its owner.s It doesn’t do anything. It doesn’t generate income. So let’s build condos.

Better yet, let’s build a giant city, or a new state, two thousand miles long and a mile wide, with 25 levels of homes, businesses, and factories. Not only would this make the border safe from scary people with ladders, it would require much deeper and longer tunnels, making tunnels more impractical and rarer.

We could build this self-contained city to maximize space usage, minimize the need for personal transportation, using well-established principles for urban design. Using a population density range of 4,600 people per square mile (New York City) to 9,800 (Paris), this city could support nine to twenty million people.

The roof of the city could support high-speed monorails and solar panels, with an occasional heliport, for transportation. Perhaps even rooftop farms. Data infrastructure would be built in from the beginning ensuring broadband access for all. Water and waste infrastructure would be more easily managed – no digging.

By populating this “wall” with residents, we won’t need border guards. We turn it over to the tech bros who are all-in on mass surveillance systems and make surveillance a condition of residence. Chips, ID cards, tracking systems at every door. Further, dispense with cash, make all transactions electronic. Basically, we create a social structure with no room to hide. Privacy would exist only in your own cubic footage of space.

We could build this glorious, technological city, fill it full of people (who, quite naturally, will break all the rules designed into the system and remake the intended social structure into something else entirely) and then turn around and build another one, only three thousand miles long, up on the northern border.

And wouldn’t this be much more fun and useful than a wall? Promise affordable housing, equal opportunity, new jobs, and easy access to healthcare, schools, and shopping without needing a car, and millions of people would give you the support you need. Think of the jobs that will be created just to build the thing. It’s huge. Huge!

And it will keep the masses busy and distracted for years.

Caregiving and the Clock

I’ve written before about the price of impatience. In this current episode of providing basically around-the-clock care for my wife, Melinda, I’ve been taking note of my occasional impatience with her. 

About five weeks ago she fell and injured her hip, tearing a muscle. Doctor told her to rest, take it easy, give it time to heal. With the holidays coming, this did not happen. Our Thanksgiving trip to Missouri worsened things. In fact, as I described in the last post, we spent a night in an emergency room and traveled the rest of the way home with a wheelchair. So, for two weeks I have been helping her transfer to and from the wheelchair, cooking for her, keeping an eye on her meds, and taking her to all manner of doctor appointments. All this while trying to keep up with as much work as possible. It’s a lot and requires good time management.

Something that *can* happen with a person in chronic pain, physical disabilities, and a stunning array of medical problems, is that their focus can become rather narrow. Mainly it becomes about their self. It’s not particularly surprising since it can take a great deal of concentration, compartmentalization, indirect thought to deal with pain or even just small physical activities. There’s nothing particularly wrong with this, it just has the ability to put two people on different calendars and clocks.

This can be awkward. I spent enough time in the Army living with the dictum, “If you’re on time, you’re late!” that it is a part of who I am. Further, I once had an agency head who was always late to her own meetings…usually 20 or 30 minutes late. I really hate being late. I hate meetings, but I hate being late more. (Deadlines are a whole other thing…I generally see those as suggestions or desired outcomes.) Anyhow, when I take Melinda to appointments, I see it as a direct reflection on me if we are not in place prior to the appointment time. 

This disconnect can lead to great deal of frustration. The only way around it is to develop patience and improve communication. I have to work to start earlier, knowing that not only does it take her longer to be ready leave (a wheelchair slows everything down), but I have to talk through the time and scheduling with her. When she’s thinking about pain, or actually trying not to think about pain, or focusing just on completing a task so I she can leave, clocks and calendars are not what she’s thinking about. 

Yesterday we talked about this, Melinda and me. She hadn’t really thought about it. Her response was that when she’s taking care of herself, she has no difficulty being on time, it’s just that when she’s relying on me, she doesn’t think about the time at all. There’s probably something to that, but I really don’t think it is all of it. She really does make extraordinary effort to do things, things that just a few weeks ago took little effort. Pain is a real influencer as well, whether she is trying to avoid it, manage it to keep it under control. It takes real effort to do this.

A couple of years ago, I witnessed a similar disconnect between two people. I didn’t understand it at the time, and the details don’t matter, but it was as if these two people were two different species, the disconnect was that great. I finally recognized that one person was very tied to “living in the moment” and letting the moment extend until the moment changed into something else. A natural, organic progression to the end of the event. The other person was less of the moment, and more of the clock. Sensitive to schedules of both parties. Neither could understand why the other didn’t understand their perspective. 

It was so ingrained to both, neither could articulate it, let alone conceive that their positions, or internal context,  needed to be articulated.

Pain and temporary disability can be very much a matter of living in the moment. I vaguely remember this from recovering from brain surgery. Focus, effort, and just trying to do would take the concepts of clock and calendar out of my thinking. Eventually I went back to being a person of the clock, it is too much a part of who I am. Even the years I didn’t wear a watch, I pretty much always knew the time, if only because there are clocks most everywhere, especially with cellphones ever-present. (One of the few things that can drive me crazy is clocks in the same room or adjacent rooms, or really in the same building showing different times. It offends my sense of rightness.)

This current episode of physical disability has brought some new lessons. While very difficult in the first 10 days, I was definitely better prepared, as was Melinda. We’ve worked through this together more easily, mainly by communicating much better. But sometimes, the clock gets in the way, if I let it.

An Update, of Sorts

In just over two months from now, in February, 2019, I will be nine years post brain surgery. I mention this because I have a couple hundred pages of unedited, raw memoir about the recovery experience. In those pages is beginning of a discussion about the need to lose weight.

At the time of the surgery I weighed over 300 pounds. At the time, my weight meant little to me other than as a body image issue, or a clothing issue. Shoes wore out faster, clothes had to be larger and of more limited selection. Physical activities were often more limited, although I was generally doing everything I really wanted to do, including backpacking. Comfort was issue. Most chairs are still designed for an average body weight and size of 160 pounds.

Whatever the problems, they were really only mine.

While in neuroscience ICU I realized my weight did impact others. It had significant impacts on those taking care of me. This became clear to me in the comments of one night nurse who frequently complained about her back. This bothered me so much, that in the middle of one night when I fell trying to get off the bedside commode, I refused to ask for help. Despite the weakness, the wonky head, and all the tubes connected to my arms, nose, and head, I refused to call for help. Instead I struggled, slowly and painfully, back into the bed.

All of this was on my mind two years ago today when I started with a weight-loss clinic. It has been a successful relationship and program for me as I have lost 100 pounds. I have put a few pounds back after ending the active weight-loss phase and significantly increasing my strength training in the gym. I feel stronger and healthier than at any point prior. I know for a fact there are things I can do now that I could not do 35 years ago, like pull-ups and chin-ups. My weight is about 25 pounds less than it was when I left the Army in 1985, but despite being older and probably having less muscle mass, I am stronger. Probably because I am making more effort at being strong then I did then.

And today all this matters a great deal. My wife, Melinda, is temporarily wheelchair bound. A month ago she tore muscle or connective tissue in her hip. Instead of resting and healing, as she had been advised, she got a bit carried away preparing for the holidays and collecting gifts for our newly announced grandchild. This aggravated her injury. A road-trip to southwest Missouri for Thanksgiving aggravated her pain to the point that she could not get out of the car at a motel in Evansville, Indiana on the way home. We found our way to emergency room, spent 12 hours there getting her pain somewhat under control, and a wheelchair.

We slowly made our way home. Fortunately we had taken her car, which is significantly larger than mine, to accommodate her walker. Otherwise we would not have gotten a wheelchair in and out of the car.

We’ve been home a week now. Returning to a mode of existence that we lived a few years ago during her different surgeries. Only now, instead of intentionally trying to use her leg to encourage healing, it’s the exact opposite. She cannot stand at all without a great deal of assistance. So, it’s really important and fortunate that I am strong and healthy right now. It takes a lot of strength to help her, and a lot of effort to protect my back.

My point is not to shame anyone. Losing weight is hard. Extraordinarily hard. Keeping it off is harder still. But there is a reality that our weight does have impacts. One of those impacts is the ability of others to care for us. More to the point, it affects our ability to receive care. This matters.  It may be long-term, it may only be the case if something bad happens, but it matters.

Being a caregiver is hard work.  Some things are harder than others. If nothing else,  a caregiver needs to be fit and strong. Strong enough to let the frequent cries of pain wash over them without interrupting their work. You’ve got to be strong….and so this is easier than it was four years ago.

 

 

The Casual Display of SSN

I was home today because it was Veterans Day and I went up to the attic today to fetch our son’s rocking horse, Daylight.

Daylight is 26 years old and shows his age. His mane is half gone, his tail completely gone. His foot pegs are dog-chewed  on the ends. He needs badly to be curried and Spruced-up a bit (despite being Yellow Pine) because in June he will be pressed into service for a second generation.

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While in the attic and sorting through a few boxes (a tribute to my ADHD) I ran across the folders with my collection of diplomas and awards from my time in the Army. I thought about tweeting photographs of some as an acknowledgement of my time in service….until I realized that all but two of had my name and Social Security Number.

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And then I started to about all the officers and NCOs I knew with such certificates, diplomas, and awards, framed and proudly displayed on their “I Love Me Wall.”

In the 1980s our use of the SSN was downright casual. In the Army, we used them for everything. When I was the company NBC (nuclear, biological, chemical warfare defense) NCO for the company, I knew most of the guys’ SSNs by heart since they were printed on the assignment tags for each of the protective masks. The SSN was everywhere, except when we used roster numbers (basic training, air assault school, for example).

My dog tags had my name, religious preference, blood-type, and yes, my SSN. Of course, it was logical to use the SSN. It is of course, a federal number, and so why create and issue a new number to keep track of people in a federal organization? And this was likely at the core of thinking that every other organization started relying on use of the SSN. If someone has already issued an ID number to an individual, and that ID has some assurances of being uniquely assigned, and has the imprimatur of the federal government, why use anything else?

I guess it is a good thing that identity fraud was much less a problem when I was young. Or at least a different kind of problem. It was easy enough to fake an identity just by saying you were someone else and it surprisingly easy to get valid a copy of someone else’s birth certificate. It’s much harder now. It’s almost impossible, even as a grandparent to get a grandchild’s birth certificate without a half-dozen signatures.

On the other hand, it really hasn’t been all the long since the Commonwealth banned printing SSNs on envelopes, or IDs. Without looking it up, it seems like it has only been about 15 years. The thing is really this. We just now starting to figure out privacy, its protection, how data connect to an individual, and how an individual connects to the data-oriented world. While we are doing this, while we are trying to protect our ID numbers of various and sundry issuances, there are scores or hundreds of data scientists working out ways to connect us to our data without those ID numbers.

I’m beginning to wonder if real privacy is little more than an illusion and a misplaced belief that we actually know the organizations that know who we are.