Thursday, March 23, 2017

Dogs, Sons, Perfection

It is some kind of national puppy day today. In our house, every day is puppy day. We:
1) make food for our dogs which involves beef, because store-bought food is kind of sketchy
2) put up wth dogs who choose to shit in the hallway instead of outside
3) allow certain dogs bed access
4) just love them so much, unconditionally

Awhile ago,  OK over a year ago, Buster died. He was a Border Collie who loved to run, who herded stones and who could probably outdo Donald Trump in an IQ test.

We have Miles, Zoe and Shasta now. Miles is addicted to running. Since I could find no support groups for Standard Poodles with Running Addiction, I just decided to run with him on a regular basis.

Zoe is old but spry. She does not enjoy exercise. She does enjoy leisurely walks and food.

Shasta has dementia, cataracts and a strong desire to eat. She is old, beautiful and annoying.

Dogs are relegated to pet status. That is, they serve our needs, and we try to make them happy and responsive to our needs. The question that arises for me is why are dogs our minions? Should they be expected to be obedient, unobtrusive. protective, happy to be on leash and polite in the human sense?

I am not sure anymore. I do think that it is nice that they don't kill us, because they could, with those teeth and that strength. But I no longer buy into the idea that they are supposed to be perfect. Dogs are alive, fairly smart except when they are not (and the same could be said for humans), they want a relationship with us and they are not privy to our fickle sense of polite.

As for me, I am glad to be greeted with unequivocal delight when I come home from work, and I appreciate the love of outdoors and running. Also, the dog spine pressed against mine at night is reassuring.

As for sons? Mine is in jail. But let me tell you this: He is not bad. We have decided, as a society, that good equals academic prowess, or athletic prowess or financial prowess. Just look at our current President. He is a billionaire, so we elected him. My son, behind bars, has more smarts than he does, and more compassion. But my son was:
1) adopted
2) bipolar
3) addicted

So, he was written off as less than. Less than Donald Trump, who has demonstrated that being smart, compassionate and self-aware is not a prerequisite to being the leader of the "free world." But we are not really free anymore. If you are Mexican: screw you. If you are from a country on the Muslim travel ban: screw you. If you are poor: screw you. If you are a woman: screw you, literally. If you are a dog? Well, I do not know Trump's stance on dogs, except to say he does not have one and that might be a sign. Dogs smell bullshit from a block away. Trump is mean, uneducated and rich. Dogs prefer nice, well-read and not so rich that they cannot stand some beach sand in the back seat of their car.

I might be biased, as my dogs are especially cool.

Back to my son: our local website (Lost Coast Outpost) that publishes instant news about criminals and local news has declared my son is evil and my husband and I inept. Here is what I have to say:
My son is beautiful.
Drug addiction is harsh.
Mental illness is real.
My husband and I try our best, and have two other kids who are highly successful.
We do not care what you think.
But why do you? And why are you so mean?

Happy National Puppy Day. If you have a dog, remember they are beings who deserve respect apart from us, who have an existence we cannot fathom and who could literally rip our throats out at any second, but choose not to.

Happy Parenting. If you have a child, young or grown, remember they are beings all onto themselves. They try their best, they are struggling to find their place in the world, and academic and athletic prowess is nice but certainly not the be-all, end-all of success. Success is that they go into the world with humility, respect, kindness and hope.

I am an expert. I have kids, dogs, patients and a chronic illness. I love my kids, love my dogs, accept my imperfect body, and continue to get out of bed every day. Yet, I am not an expert, because I never know for sure what I am doing is right. I just want to express love, respect, and hope.

My final piece of advice is this: Trust Beethoven. That guy was deaf but still wrote the best music ever.  He could hear with his soul, and he loved macaroni and cheese. What else do you need to know?

Wednesday, March 15, 2017

Hashtag No Excuses

As a music major, a hashtag is always a sharp. Not a sharp in the sense of the medical world.

Rather, a sharp indicating a half step higher than the usual note in music.

A double sharp is an X. Meaning two half steps higher on the musical scale than usual, at least in music. In medicine, it is a chromosome associated with females. In movie ratings it means--ick. In sports, like the X-games, it means you are doing a sport which is potentially life-threatening by its very nature.

But I digress before I even begin.

What is on my mind today is not quitting. Not quitting life, not quitting parenting, not quitting running, not quitting music, not quitting hope, not quitting trying, not quitting trying to plant a vegetable garden even though the Redwoods blot out the sun, not quitting checking the microwave to see if Obama is in there somewhere and planning to rescue us anytime soon.

I watch a lot of people struggle in their daily life and try my best to offer some advice on healing. I watched people in Guatemala on my recent trip there, where I was part of a group fitting paralyzed people, mostly children, with wheelchairs, and I saw their struggle and also the mundanity of that struggle. Struggle does not belong to others. Struggle is the human condition. My kid and I learned to fit these people to wheelchairs which reduced the need for their family members to carry them everywhere. Carry them everywhere. Consider that. Like this 14 year old guy with Muscular Dystrophy.

My kid and someone else's kid, Guatemala, 2/2017

Why not give up? In Guatemala, we met a woman who walks a marathon twice weekly to go to the "laundromat" with her family's clothes, which basically is a cement tub that she scoops water into, sort of like taking the clothes to the river, but in the hills, where the Mayan people (who are > 60% of the population, mind you) were pushed, there is no river or water.

The "Laundromat", Guatemala, 2/2017

What compels her to keep this up? I mean she is not getting any race medals or swag. I assume her family appreciates it, but in my experience as a mother, there is not a whole lot of verbal gratitude for doing the scut work of parenting life.

I like to look for examples of geriatric acts of athletic stupendousness. Like this 65 yo sub 6 minute miler. Or like the Iron Nun:

It helps me shift my perspective of the possible. It helps me feel less sorry for myself. It helps me see there are not a lot of great excuses.

This is not to say we should all be doing Iron Man level athletics, or X-Games level daring, or even walking a marathon to do our laundry. Would it not be nice to have a way to do laundry closer to home? But greed begets struggle, and therein lies the rub. It is a First World problem to need to create struggle (Iron Man Triathlons, marathons, going to the gym, and all that excellent stuff). It will be interesting to watch the next 4 years unfold, as struggle for basics becomes more of a reality for many Americans. For the record, by the way, I met no "bad hombres" in Central America. But man, they drive like crazy people. Way worse than even Californians

Why do we create struggle? I defer to my philosophy gurus to answer this, but ultimately I think we need to feel connected to each other (which is a struggle), connected to our bodies (ouch), connected to a higher purpose (what does it all mean?????) and recently, connected to our electronic devices. I cannot count how may times my watch has told me to "Move!" It is disconcerting, honest and fairly hilarious.

Last night, after work, despite my excuses:
-on call 24/7
-worried constantly about my kids and patients
-a horrible parent, I feel
-gas tank almost empty: in my car and in my body

Despite all those valid issues, I drove north and ran some hilly, sandy, rocky, heart-shattering beautiful terrain.

Trinidad, March 2017

I ran. Not away, but to, not in struggle, but in gratitude, not unaware but awake.


Twitter is ridiculous and kind of fun. I am trying to picture the Guatemalan laundromat women posting on twitter.

Marathon and laundry! In my skirt! Take that, gringo gym rat. #no excuses

Struggle on. It is what we do, us humans.

Friday, February 3, 2017

Mother Bear

If you have never watched or read the Little Bear series, do so immediately. Maurice Sendak illustrated the books. The videos (now DVDs or BluRays or whatever) are lovely.

Mother Bear is my hero.

It is not just cuteness and light. I am, as most mothers, seriously protective of my children.
We are faced now with a government who does not consider protection of children a priority. So how do we respond? Yes, call your senators and congresspeople. Yes, march. Yes, sign petitions, yes, join the ACLU.

I think of the Syrian boy on the beach and wonder how we can all go on as if this is OK. What if this was your child? But people like him are not welcome in our country. Not anymore.

My children are diverse. One was accosted in Seattle (in Seattle!?) last weekend for being with her girlfriend in public. One is in jail and faces years in prison for one mistake made with mental illness and drug addiction at age 18. And one is a straight A student who I am leaving the country with for a trip later this month and mildly afraid there will be trouble getting her back in. What if her adoption from a foreign country is questioned? Will my government deem her an immigrant who does not belong here?

She and I are headed to Guatemala, to help fit paralyzed kids into wheelchairs. Now I know, this sounds like a bleeding heart liberal thing to do. But we are joining a group who has done this for years, and we are hoping to learn something in the process.  What is the problem with liberals? Well, I guess it is we keep on trying, despite all evidence against hope.

I was reading today that Donald Trump asked his female staff to dress like a woman. I am wondering what this means. Today I worked to save lives, to lessen suffering and to parent my children. What outfit would best serve these purposes? For what it is worth, I wore pearls.

As a runner, I dress in whatever makes sense for the weather. Oiselle is a good source of women friendly running clothes. They also support strength and power.

I keep thinking about the man who accosted my girl and her girlfriend in a purportedly liberal city. What was it that bothered him so? Was it their beauty? Their strength? Their lack of need for a man?

I keep thinking about the legal system that thinks my son deserves prison for 10 years for one mistake, when he has mental illness and addiction. Will this help him be a better person? Is there any room for compassion and healing?

I keep thinking about adoption and China's weird thing about girls and my absolutely astounding daughter who seriously could conquer the world. In our small town, she faces racism. In our bigger world, she faces questions about who she is and where she belongs. Yet really, she is just a kid with mad skills at dancing and academics who plans to be a surgeon and who wants to make a difference in the world.

I am mother bear. I am angry, and scared and hopeful and protective. I will not stop fighting for my children, and for the children of others.

May compassion return to our dear country.

Thursday, January 5, 2017

Dancing and Death

BJ Miller has been getting some social media attention lately, which is cool. He is a Zen Hospice Physician, motorcycle rider, triple amputee, death expert. In this article my favorite part is "the 20's dude room" that came about when a young man with terminal cancer moved into  the Zen hospice house. But the most important part of the whole article for me was this statement: Regarding the mission of Zen Hospice, "It's also about puncturing a competing impulse, the one I was scuffling with now: our need for death to be a transformative experience. Miller says "Most people aren't having these transformative deathbed moments...And if you hold that out as a goal, they're just going to feel like they're failing."

The other day I was in a visit with a patient who was mortified and frankly in tears because their oncologist told them they had "failed" chemotherapy. Like chemotherapy was this test they should've studied for, and if they had only done better, then well, maybe there would have been something left to do. Because that was the other message they received, "there is nothing more we have to offer."

Recently a friend asked about my work and how it relates to what Dr Miller does. My work is not strictly the business of palliative care, though I have some skills (as any physician should) in this area. And although I do some hospice work, it is not that either. What I do, as my main doctoring gig, is meet people where they are and try to be a guide of sorts, as well as let them lead the dance now and again. Now, I can just see some of my old-school mentors barfing into their mouth a little at this description of doctoring. We are really supposed to be scientists, technicians, and masters of death, right? Our patients come to us for answers and solutions, yes? 

I am going to get back to this point in a minute, while I pause to give you a holy sonnet by John Donne. Which has the point that death should not be so full of itself. Is death the be-all and end-all? Should we fight it with all our might? Should people die, actually? Because when they do it really feels terrible. Is death a beginning or an end? Is death just another phase of life? Should doctors be good at end of life care?

Which brings me back to the barf-inducing take I have on excellent doctoring. I propose though, that it is scientifically sound and as an approach might actually let people live longer. Like, all the way until they die.

A few things about what I believe are requirements for health:
1. Civil Engineering.
2. Freedom from terror, and a place to call home.
3. Trust that your society and community have your back.
4. Healthy food, adequate exercise and decent sleep.
5. Good luck.
6. Knowing what matters to you and what matters to those you love, especially if you are their Durable Power of Attorney for Healthcare.
7. Occasionally, extremely cool technology like transplants, gene therapy, extraordinary medications, and the like.
8. 3-D Printers. So damn cool.

Number 6 above is well explored in Gawande's book Being Mortal. Number 6, that is Beethoven's 6th,  would also be one of the songs on my deathbed playlist, a concept introduced to me by a hospice nurse I don't know well, and whom lives across the country from me but with whom I feel a connection. Maybe we met once in another life too? Do we get more than one life? What say you, Tom├ís?

Number 6 is where I find my groove as a physician. The people I serve are not easily classified, but share being on the older side and medically complicated. I (usually) know just what medications to prescribe, and just what tests to order and when to call in the specialists and when to call in hospice. This is why I spent years of my life training to be a doctor. But none of it, NONE OF IT, matters if I do not understand their goals of living. And then get out of the way, much like BJ Miller got out of the way so the young man in that article could live out his days without the specter of a "physician guru" all in his space.

In a practical sense, there are dozens of examples of doctoring with the spirit of palliative care throughout the spectrum of illness and life. Yes, there are technical aspects (symptom control, a multidisciplinary team approach, excellent and learned communication skills). But often it comes down to recognizing the person wearing their disease(es).

Here are things I consider and my team does and I argue anyone claiming to be a healer, particularly toward the end of life should have some clue about:

Is that person feeling safe and dignified?
Who do they need to see or speak with, especially if they are nearing the end of life?
What kind of atmosphere do they wish to live in as they near death?
Do they need to go down in flames (prolonged ICU stay, last ditch futile medical efforts) to feel cared for, and if so, why?
Would you be surprised if they were not here in 6 to 12 months? If so, might they consider hospice care, which is grossly underutilized? And, ironically, hospice can often extend people's lifespan due to the tender loving care and de-escalation of toxic medical therapies.
Do they need a palliative care consult? There are actually specialty trained physicians with teams who do this well, including a great and innovative team,  right in this town.
In regards to the elderly, do they even want to be hospitalized, and if so, do they have someone to advocate for them while they are there? Hospitals are uncomfortable and can lead to confusion and debility sometimes for weeks to months in older adults.
Do they need spiritual support?
Do they even like harp music? I don't, so please, no harps at my bedside when I am in my last days! No offense to harpists, or lovers of harps or harpists, or family members of harpists, or harp makers or people who kind of like harps.
Do they need their toilet unplugged? Because this is a real issue for some people living in less than desirable housing situations and our team will unplug a toilet in the name of comfort and good health (see number 1 above, civil engineering).
Just some of the other things our team has done: cut invasive bamboo, cleaned massive garbage piles, offered mindful meditation by a trained coach, prescribed tai chi, prescribed writing letters to great grandchildren (on an actual Rx pad, for the person to bring home, and it was tucked into their bra at the visit so I know they took it seriously), provided blankets and heaters for cold apartments and homes, cooked dinner on house calls, gone to bat for people with their slum lords, helped find safe refuge from abusive situations, advocated for the autonomy of our "patients", helped find housing, provided showers for people, including those who have not had access to a shower for a year, prescribed and helped purchase comfortable and appropriate shoes, reunited estranged family members,  and prescribed the 4 important things to say before we die (Thanks, Dr Byock).

The 4 things:
1. Please forgive me
2. I forgive you
3. Thank you
4. I love you

Death, be not a competition. "Dying Well" and a "Good Death" are good catch phrases to get us talking about it, but these sayings also kind of irk me. Often death just plain hurts, and sometimes it is mundane. Frequently it is fraught with the unfinished business of families and friends. Too often it strikes those who have not yet had a chance to live fully, and that does not just mean "too young", because I have known some very young people who died having lived fully, with incredible presence right until the very end. And sometimes death strikes when unexpected, and does not allow anyone to even ponder the idea of a good death. Sudden death is like a meteor out of nowhere and the crater it leaves behind can be formidable.

Death is not negotiable. But excellent care at all phases of life, including the last one, should be expected, the same way we expect good care when we give birth, or when we take our kids in with a broken arm, or when our appendix bursts or when we have pneumonia or when we have a potentially curable yet serious illness. It does not take a master like BJ Miller to offer compassionate and decent care in the face of serious illness or dying. It should be the norm. But thank God for people like BJ for having the courage to show us that suffering can be tended to, most especially if we acknowledge it as part of being a human being.

I have had a fair amount of loss in my life, and in recent months have watched friends and family mourn for loved ones, and a nation mourn for a bunch of iconic, lovely people. Let us not forget the very real fact of mourning. Tending to the dying can be beautiful, but it is never easy. Continuing living after saying goodbye? Now that takes a special kind of courage.


Trying to remember you
is like carrying water
in my hands a long distance
across sand. Somewhere people are waiting.
They have drunk nothing for days.

Your name was the food I lived on;
now my mouth is full of dirt and ash.
To say your name was to be surrounded
by feathers and silk; now, reaching out,
I touch glass and barbed wire.
Your name was the thread connecting my life;
now I am fragments on a tailor's floor.

I was dancing when I
learned of your death; may
my feet be severed from my body.