Saturday, July 25, 2020
Kansas COVID-19 update, Week 2
Based on the latest available data, Kansans seem to be spreading COVID to each other a bit less than last week, which is good! But we're still spreading it too much to change the trajectory of the outbreak from one that is growing to one that is shrinking. And we're starting to see evidence of that in our hospitalization numbers.
(Read to the bottom for bonus content on one county that HAS turned things around).
The Good: Our reproduction rate has ticked down ever-so-slightly from 1.12 to about 1.09 or 1.10. The reproduction rate, or "Rt" (or "R0"), remember, is the number of COVID-19 infections that each infected person causes, on average. When it is above 1.0, the outbreak spreads. When it's below 1.0, the outbreak shrinks. We can reduce it by doing things like social distancing and wearing masks. At our current Rt, the number of COVID-19 cases in Kansas will double about every 27 days. But we're not that far away from making our case numbers shrink (like we did in May). It's been hard to pin down just how effective masks are at preventing the spread of COVID-19. But a new analysis of all the mask studies available determined that if 95% of people in a given area wear masks, it reduces the spread of COVID-19 in that area by at least 30% (and the authors say that's a conservative estimate). That 30% reduction would be more than enough to get Kansas' Rt below 1.0.
The Bad: After weeks of increasing COVID-19 cases, Kansas hospitals are starting to feel more strain. Earlier this month, we had about half our ICU beds available. As of July 23, we had 36% available. That's still plenty of capacity statewide, but it's not spread evenly, and the overall trend is bad. In three weeks, the number of ICU beds taken up by COVID-19 patients doubled, from 49 on July 1, to 98 on July 23. Remember: hospitalizations are a lagging indicator (and ICU admissions tend to lag even more). That means that even if we take action TODAY to reduce COVID-19 spread, hospitalizations will almost certainly continue to rise for another two or three weeks. If you wait until your hospitals are full, you've waited too long. That's when things that were previously unthinkable happen, like an overburdened hospital in Texas preparing to decide which patients they will turn away and send home to die. To be clear, we're not near that point in Kansas right now. But two months ago that hospital in Texas wasn't either.
The Ugly: We're still not testing enough. According to Johns Hopkins, our test positivity rate (the percentage of COVID-19 tests that come back positive), has risen from 10.7 to 11.0%. That puts Kansas among the top 10 states in a stat we do NOT want to be top 10 in. Remember: the World Health Organization recommends a test positivity rate of no more than 5% to be reasonably confident you're identifying most cases of COVID-19. In Kansas, test positivity rates remain persistently high (about 17%) in Wyandotte County in particular.
Bonus: It is possible to turn things around, and turn them around quite quickly. For evidence, look at Douglas County. Douglas County, home to the University of Kansas' main campus, was recording steady increases in new COVID-19 cases from mid-June until early July. Then, almost as suddenly as the rate of new cases spiked, it began dropping quickly. What happened? Around the end of June, the local government voted to close bars and require masks in public places. For about a week, the rate of new cases kept going up (because a lot of people had already been exposed). And then it dropped, and has kept dropping for a couple weeks. Given the robust bar scene in Lawrence, it's likely closing that one industry had a bigger effect there than it would have in other counties. And Douglas County still has to be diligent, because its rate of new cases remains relatively high. But they've reversed the growth trend, and in tracking COVID-19 trends are everything. Remember that: these stats reflect a point in time — they're important, but it's more important to watch whether things are trending better or trending worse. Because in a viral pandemic, the trend is not likely to change unless there is a behavior change, like there was in Douglas County.
Labels:
coronavirus,
COVID-19,
Douglas County,
Lawrence
Saturday, July 18, 2020
Kansas COVID-19 update, Week 1
Kansas is at an inflection point in the novel coronavirus pandemic. Our state weathered the first wave relatively well, and currently has one of the lowest COVID-19 death rates in the country.
But after an uneven county-by-county reopening of the economy in late May and early June, case numbers have been ticking up. This week we found out that Kansas was one of 18 states designated as "red zones" for COVID on an internal White House document based on the growth in new cases.
Raw case numbers are far from a perfect metric, because they can fluctuate a lot based on the amount of testing you do. So, every week (for an indeterminate number of weeks), I'm going to highlight some other metrics on this blog that hopefully will give us a better idea of just how we're doing in Kansas, and help people make decisions about how much they should be going out and exposing themselves to other people's germs. I promise to provide links to every number I cite, so you can go back and see the data for yourself. Here goes:
The Good:
Hospital capacity in the state is in good shape, overall. As of July 14, the CDC estimated that only about half of Kansas' regular inpatient beds and ICU beds were full. But this good news comes with a caveat: COVID-related hospitalizations have recently begun rising in the Kansas City area and in Wichita. Hospitalizations are a "lagging indicator" (they don't go up until cases have been rising for several weeks). Once they start to rise it takes at least two weeks for any behavioral changes to stop that rise. In other words, if you wait until hospitals are almost full to act, you've waited too long.
The Bad:
Our infection reproduction rate of approximately 1.12, shows that Kansans are spreading COVID to each other too much. The reproduction rate, often abbreviated "Rt" or "R0," is the number of new infections that each infected person creates. If the rate is at exactly 1.0, then every infected person only infects one other person and the outbreak doesn't get worse or better. The higher above 1.0 Rt goes, the faster the outbreak spreads. If you hold it below 1.0, you can starve the virus of the new hosts it needs to survive and slowly choke off the outbreak altogether. Germany has had good results tamping down COVID by focusing on this number: when reproduction rates rise above 1.0 in a given region, they put restrictions in place in that region. When it goes back below 1.0, they relax them. It's a proactive approach that helps them get ahead of outbreaks before they become problematic. What factors reduce the COVID reproduction rate? Avoiding crowds, social distancing, and wearing masks, especially when indoors. The Rt rate is notoriously hard to estimate, but multiple sources now peg Kansas' rate above 1.0. As long as it stays there, the outbreak will continue to grow.
The Ugly:
Our test positivity rate in Kansas is too high. Test positivity is the percentage of COVID tests that come back positive. It's a better measure than raw case numbers because it doesn't "penalize" you with higher numbers if you do more testing. In fact, the more testing you do, the lower the test positivity rate should be. In Kansas, however, it has climbed to 10.7%, the 11th highest rate in the nation. Anything over 10% is generally considered a "red flag" that means you're not testing enough to be reasonably confident you're identifying most cases. The World Health Organization recommends governments maintain a test positivity rate of 5% or less before reopening their economies. Data from some of the European countries that have been most successful at reopening without seeing a surge in cases suggests that the optimal threshold may be even lower — more like 1.5%. Kansas obviously has a long ways to go to reach either threshold.
Friday, June 19, 2020
How a cell phone made me finally confront my racial bias
One day when I was living in the D.C. area I took a wrong turn leaving a metro stop and ended up in an unfamiliar neighborhood. It was a pretty unremarkable residential area — streets lined with blocks of rowhouses, some well-maintained and some not-so-much. As I walked down the street, trying to get my bearings and not look too obviously lost, I gradually became aware that there weren’t a lot of other white faces around. I knew this shouldn’t bother me. Still, I could feel myself tensing up.
A few young Black guys were standing around in a circle talking in the front yard of one of the houses up ahead. As I passed by them on the sidewalk, the one closest to me reached into his pocket. I saw a flash of silver and my heart jumped as he pulled out… a cell phone. I kept walking, feeling a sense of relief, followed almost immediately by a deep sense of shame.
Of course it was a phone, I thought to myself. What the hell did you think it was?
There was no way to hide from the truth, though: For a split-second, I thought it was a gun. I thought that that young man, who was just standing around talking to his friends, was going to pull a gun on me. Because I am a racist. Or at least I was in that moment. And what is life, but a series of moments in which we must constantly decide how we are going to see each other and treat each other?
In the weeks that followed, my thoughts often returned to that moment. I kept trying to figure out why I had that prejudiced, completely unfair reaction. As a kid, I had grown up in a mostly-white neighborhood in a mostly-white town. But by the time I walked down that street in DC, I had had classmates, friends and coworkers who were Black. My parents taught me to respect everyone, regardless of skin color. My faith taught me that we are all members of one body, made in the image of God. No Black person had ever done anything to hurt me.
So where did that prejudice come from?
I started doing some research. And what I found was that I had gradually absorbed the notion that Black men are a threat, through a thousand movies and TV shows, newspaper mug shots, and conversations overheard in all-white spaces about “thugs” who live in “ghettos.”
All of that had built up over years in my amygdala, a small area near the base of my brain that processes basic emotional responses, including fear. As unconsciously as breathing air, I had learned the hateful, destructive prejudice that Black men are to be feared. According to one analysis of studies that I read:
There is overwhelming evidence that young Black men are stereotyped as violent, criminal, and dangerous. Indeed, research suggests that Black men are associated with threat both implicitly (Maner et al., 2005; Payne, 2001) as well as explicitly (Cottrell & Neuberg, 2005). Because they are so readily appraised as threatening, furthermore, Black men are more likely to be shot erroneously (i.e., when holding benign objects rather than weapons; Correll, Urland, & Ito, 2006), and are often (mis)perceived, suspected, automatically evaluated, and misremembered as aggressors (Bargh, Chen, & Burrows, 1996; Eberhardt, Goff, Purdie, & Davies, 2004; Graham & Lowery, 2004).
Subsequent scientific studies have found that tall Black men are perceived as particularly threatening (while tall white men are perceived as being more competent than shorter men) and that Black men are perceived as larger than they truly are.
Mix all of those stereotypes together, combine them with legal precedents that allow police to use deadly force based on their perception of how threatening a suspect is (versus how threatening he or she actually is), and there’s little wonder that, per capita, Black men in the USA are more likely to be killed by police than white men (in raw numbers police kill more white men, but the U.S. population is roughly 60% white and only 12% black).
I am not anti-police. I spent a solid two years of my life writing a book about an exemplary officer who died in the line of duty. I believe that as a society we have given police a nearly impossible job by underfunding social work, mental health, substance abuse treatment, etc. and then dropping all of the resulting societal problems in the laps of police and saying “here, you take care of this.”
But it would be naive to believe that there is not racial bias in policing, given that there is evidence of bias throughout the criminal justice system. Black and Hispanic drivers are more likely to be stopped by police, but less likely to have illegal items (guns, drugs) in their cars than white people who are stopped. When arrested for the same crimes, black and Hispanic people are more likely to be prosecuted, and face harsher sentences than white people, up to and including the death penalty.
Think about that for a second. Prosecutors and judges, who have extensive legal education and plenty of time to weigh their decisions, still treat black and brown people more harshly. It would be frankly remarkable if police officers didn’t exhibit some of the same biases when making quick decisions in the field.
That’s not to say that all individual police officers are racist. But there is ample evidence that the criminal justice system as a whole is racist.
And it’s not unusual in that regard.
There is systemic racism in health care:
- https://www.statnews.com/2020/06/04/racism-contagion-health-care-must-eradicate/
- https://www.cdc.gov/media/releases/2019/p0905-racial-ethnic-disparities-pregnancy-deaths.html
- https://www.pnas.org/content/113/16/4296
There is systemic racism in journalism:
- https://www.cjr.org/special_report/10-newsrooms-racial-disparity.php
- https://journals.sagepub.com/doi/abs/10.1177/073953299101200310
- https://niemanreports.org/articles/how-implicit-bias-works-in-journalism/
There is systemic racism in banking:
- https://www.nytimes.com/2019/12/11/business/jpmorgan-banking-racism.html
- https://journals.sagepub.com/doi/abs/10.1177/016059760803200204
- https://www.revealnews.org/article/for-people-of-color-banks-are-shutting-the-door-to-homeownership/
There is systemic racism in education.
- https://journals.sagepub.com/doi/full/10.3102/0091732X16686949
- https://www.pnas.org/content/116/17/8255
- https://www.hepg.org/her-home/issues/harvard-educational-review-volume-80-issue-1/herarticle/the-case-of-freedle,-the-sat,-and-the-standardizat
There is systemic racism in science.
- https://www.smithsonianmag.com/science-nature/disturbing-resilience-scientific-racism-180972243/
- https://www.nature.com/articles/d41586-019-01968-z
- https://philipperushton.net/wp-content/uploads/2015/02/race-r-k-theory-sex-aids-rushton-lovejoy-wilson-mcewan-leslie-social-science-medicine-1990.pdf
There is systemic racism in basically every institution in the U.S., whether it’s one that you hold dear or one that I hold dear, and that’s because racial stereotypes are pervasive in American society. They are baked into our amygdalas. And the protests going on around the world suggest that this is not just a U.S. problem either.
I don’t pretend to know how to fix all of these injustices. But I think it’s well past time that white people, including myself, acknowledge them and try to understand how our own personal biases — conscious and unconscious — are both caused by systemic racism and feed back into it.
The lives of people of color depend on it.
About eight years after I walked down that street in D.C., Sacramento police officers killed a Black man named Stephon Clark in his grandmother’s backyard.
The officers were looking for a suspect who had been breaking into cars in the neighborhood. They later said they thought Clark pointed a gun at them when they entered the yard. They shot Clark seven or eight times (autopsy reports differed), including at least three times in the back. An exhaustive search of the yard turned up no gun.
The only object found anywhere near Clark’s bullet-ridden body was his cell phone.
Saturday, March 21, 2020
Why I'm fanatical about social distancing
I’m supposed to be in Las Vegas right now.
Back when the new coronavirus was still a remote thing happening in other places, before it upended life as we know it, my wife and I were planning to fly to Sin City, stay at the Stratosphere and drive to the Grand Canyon. It was a bucket-list type trip (the Grand Canyon part anyway; not Vegas so much).
But now of course, that’s cancelled. We’re at home for the foreseeable future. At home for work, play and everything in between. Which is fine. In fact, I’ve probably been more adamant about “social distancing” than most people, approaching even trips to the grocery store with a “get-in-and-get-out-and-don’t-go-near-anyone” attitude.
That’s because I know what it feels like to need a ventilator. And I want to make sure there’s one available for me, you, or your parents or grandparents if they need it.
Almost exactly 16 years ago I was a healthy, active college senior who went to bed thinking he had the flu and then woke up the next morning so sick he couldn’t walk or even stand. By noon I was at the local hospital, where they told me they thought I had bacterial meningitis.
I heard the words, but I didn’t really know what they meant. I knew that I felt sicker than I’d ever been, but I also knew I was at a hospital, in the United States, so they were going to make me feel better. That’s what hospitals do, right?
Well, it turned out that hospital couldn’t do it. They gave me an oxygen mask, but I still couldn’t seem to catch my breath. I was laying in bed, gasping for air like I’d just run several miles. No matter how hard I tried, I couldn’t fill my lungs. It was scary as hell.
They put me in a helicopter to take me to a bigger hospital. During that 20 minutes in the air, it kept getting harder to breath. I didn’t know what else to do, so I started to pray. First the Our Father. Then I get so light-headed and disoriented that I forgot the words to that prayer that I’d recited thousands of times. So I switched to the Hail Mary.
By the time we landed and the paramedics were wheeling me into the bigger hospital, I was having so much trouble breathing that I blacked out.
When my parents arrived that night a doctor told them that the meningococcal bacteria had spread throughout my bloodstream and was damaging my organs. My lungs were failing. They would have to put me on a ventilator.
I was sedated to make sure I stayed unconscious while the medical staff ran a tube down my throat and into my lungs. The tube was connected to a machine that essentially breathed for me. After about 10 days the antibiotics had killed off the meningococcal infection and the medical staff decided to lift the sedation, take me off the ventilator and see if I could breathe on my own. That lasted about a day or two, during which time I have hazy memories of nurses at my bedside imploring me to “Breathe deeper. You’ve got to breathe deeper,” and me trying to tell them that I couldn’t.
Then I remember a doctor telling me I had pneumonia, and they were going to have to put me back on the ventilator.
I was sedated again and intubated for about another 10 days. A doctor told my parents “He’s not out of the woods yet.”
All in all, I spent about three weeks on a ventilator. I was unconscious for most of it, thankfully. My brief moments of semi-consciousness were dominated by an overwhelming, unbearable gagging feeling. When I finally fully woke up the tube was gone, but my throat was drier than it had ever been and so scratchy I couldn’t speak above a whisper.
I hated that ventilator. But there’s no doubt it saved me. Twice, I suppose.
Meningitis took parts of my hands and feet. But because that ventilator was available, it didn’t take my life.
Because of that ventilator, I’ve had 16 more years. In those 16 years I’ve gone swimming in the ocean off Rio de Janeiro and hiked the Swiss Alps. I’ve written two books, finished grad school and gotten to know my nieces and nephew. I met a beautiful woman who I clicked with better than anyone I’d ever met, and I married her.
Because of that ventilator, I know what 16 more years can mean. So I’m staying home, until this damn virus is gone. Because I don’t want to take a ventilator away from someone else because I need one, or someone I breathed on needs one.
The Grand Canyon will still be there when this is all over.
Back when the new coronavirus was still a remote thing happening in other places, before it upended life as we know it, my wife and I were planning to fly to Sin City, stay at the Stratosphere and drive to the Grand Canyon. It was a bucket-list type trip (the Grand Canyon part anyway; not Vegas so much).
But now of course, that’s cancelled. We’re at home for the foreseeable future. At home for work, play and everything in between. Which is fine. In fact, I’ve probably been more adamant about “social distancing” than most people, approaching even trips to the grocery store with a “get-in-and-get-out-and-don’t-go-near-anyone” attitude.
That’s because I know what it feels like to need a ventilator. And I want to make sure there’s one available for me, you, or your parents or grandparents if they need it.
Almost exactly 16 years ago I was a healthy, active college senior who went to bed thinking he had the flu and then woke up the next morning so sick he couldn’t walk or even stand. By noon I was at the local hospital, where they told me they thought I had bacterial meningitis.
I heard the words, but I didn’t really know what they meant. I knew that I felt sicker than I’d ever been, but I also knew I was at a hospital, in the United States, so they were going to make me feel better. That’s what hospitals do, right?
Well, it turned out that hospital couldn’t do it. They gave me an oxygen mask, but I still couldn’t seem to catch my breath. I was laying in bed, gasping for air like I’d just run several miles. No matter how hard I tried, I couldn’t fill my lungs. It was scary as hell.
They put me in a helicopter to take me to a bigger hospital. During that 20 minutes in the air, it kept getting harder to breath. I didn’t know what else to do, so I started to pray. First the Our Father. Then I get so light-headed and disoriented that I forgot the words to that prayer that I’d recited thousands of times. So I switched to the Hail Mary.
By the time we landed and the paramedics were wheeling me into the bigger hospital, I was having so much trouble breathing that I blacked out.
When my parents arrived that night a doctor told them that the meningococcal bacteria had spread throughout my bloodstream and was damaging my organs. My lungs were failing. They would have to put me on a ventilator.
I was sedated to make sure I stayed unconscious while the medical staff ran a tube down my throat and into my lungs. The tube was connected to a machine that essentially breathed for me. After about 10 days the antibiotics had killed off the meningococcal infection and the medical staff decided to lift the sedation, take me off the ventilator and see if I could breathe on my own. That lasted about a day or two, during which time I have hazy memories of nurses at my bedside imploring me to “Breathe deeper. You’ve got to breathe deeper,” and me trying to tell them that I couldn’t.
Then I remember a doctor telling me I had pneumonia, and they were going to have to put me back on the ventilator.
I was sedated again and intubated for about another 10 days. A doctor told my parents “He’s not out of the woods yet.”
All in all, I spent about three weeks on a ventilator. I was unconscious for most of it, thankfully. My brief moments of semi-consciousness were dominated by an overwhelming, unbearable gagging feeling. When I finally fully woke up the tube was gone, but my throat was drier than it had ever been and so scratchy I couldn’t speak above a whisper.
I hated that ventilator. But there’s no doubt it saved me. Twice, I suppose.
Meningitis took parts of my hands and feet. But because that ventilator was available, it didn’t take my life.
Because of that ventilator, I’ve had 16 more years. In those 16 years I’ve gone swimming in the ocean off Rio de Janeiro and hiked the Swiss Alps. I’ve written two books, finished grad school and gotten to know my nieces and nephew. I met a beautiful woman who I clicked with better than anyone I’d ever met, and I married her.
Because of that ventilator, I know what 16 more years can mean. So I’m staying home, until this damn virus is gone. Because I don’t want to take a ventilator away from someone else because I need one, or someone I breathed on needs one.
The Grand Canyon will still be there when this is all over.
Monday, June 13, 2016
Can we have nuanced opioid reform?
When the medical examiner's report revealed that Prince died of an overdose of the powerful opioid Fentanyl, it worried me. A national conversation about curbing the growing opioid painkiller abuse epidemic has finally bubbled up to the congressional level and the last thing that conversation needed, I thought, was a high-profile celebrity death to stir emotions.
Emotional appeals seem to have become more a feature of government in recent years. They're effective politics, because they spur action, but they're not always great for making careful, nuanced policy. Based on personal experience, I think that's what the opioid epidemic needs.
I have a complex relationship with Fentanyl. I'm deeply grateful for it, but also kind of scared of it.
The first time my mom went and filled a prescription for my Fentanyl patch after I was released from the hospital following my meningitis-related brush with death 12 years ago, the pharmacist said "He's been on this awhile, right? Cause if you just started him at this dose, it could kill him."
Indeed, I had been on Fentanyl for awhile at that point. About four months, actually, while hospitalized with the bacterial infection that caused horrific damage to my limbs. It was Fentanyl that got me through the trips to the "tank room" where wound techs and a plastic surgeon sliced off layers of dead tissue on my arms and legs until they bled — the signal that they had reached living tissue that could be saved. It was Fentanyl that allowed me to rest when I woke up racked by post-surgical pain after amputations of my fingers and toes.
I had a port in my neck where nurses would inject the painkiller directly into my bloodstream. No matter how much pain I was in, that shot was accompanied by an immediate wave of warmth and all my tensed muscles went limp. For me, it was a wonder drug.
I didn't ask any questions at the time. I was just grateful for the pain relief. But my parents were concerned from the beginning about the possibility of me getting hooked.
When they asked the pain management specialist about it, she was adamant that as long as I was taking it for legitimate pain relief, there was little chance of dependence. It would be after the pain had subsided that they would have to watch me carefully.
By the time I left the hospital I was in the process of being weaned off. The injections had been replaced by slow-release Fentanyl patches, which in turn would be replaced by little Fentanyl-laced suckers. Yes, suckers, like candy.
And then it was time to go off those too. My wounds were not completely healed, but they were more garden-variety, surface-type injuries and the pain was manageable with less extreme meds.
I had taken the painkillers as directed and was weaning off them properly, under a doctor's supervision. And yet those first couple weeks without any Fentanyl at all were kind of miserable. It wasn't so much that I was in pain. It was that I just felt sapped, fatigued, without any motivation to even get out of bed in the morning.
Those days passed and I eventually felt like myself again. But I had gotten a window into how easy it would have been to get hooked. To go drug-seeking, if I had been more mobile and under less parental supervision. To look for another doctor who would prescribe me more Fentanyl. To substitute something less regulated but similarly opium-based, like heroin. Scary.
So when people say we need to rethink the ease with which patients get opiates and the amount they get, I think back to those days and tend to agree with them. But then I think back to those days in the tank room and find myself hoping that the regulatory pendulum doesn't swing too far in the other direction, because these drugs really can make life tolerable for people who are experiencing intense suffering.
Clearly, when people who have a history of drug abuse and aren't trying to hide it get prescribed opiates with hardly a word of warning or a plan of action, there's a problem.
But by the same token, not every patient's pain can be effectively managed with harp therapy or trigger point injections.
So we need to have a really thorough, nuanced policy discussion before we make new regulations. That's the way to honor Prince. Here's hoping we're still capable of doing that.
Emotional appeals seem to have become more a feature of government in recent years. They're effective politics, because they spur action, but they're not always great for making careful, nuanced policy. Based on personal experience, I think that's what the opioid epidemic needs.
I have a complex relationship with Fentanyl. I'm deeply grateful for it, but also kind of scared of it.
The first time my mom went and filled a prescription for my Fentanyl patch after I was released from the hospital following my meningitis-related brush with death 12 years ago, the pharmacist said "He's been on this awhile, right? Cause if you just started him at this dose, it could kill him."
Indeed, I had been on Fentanyl for awhile at that point. About four months, actually, while hospitalized with the bacterial infection that caused horrific damage to my limbs. It was Fentanyl that got me through the trips to the "tank room" where wound techs and a plastic surgeon sliced off layers of dead tissue on my arms and legs until they bled — the signal that they had reached living tissue that could be saved. It was Fentanyl that allowed me to rest when I woke up racked by post-surgical pain after amputations of my fingers and toes.
I had a port in my neck where nurses would inject the painkiller directly into my bloodstream. No matter how much pain I was in, that shot was accompanied by an immediate wave of warmth and all my tensed muscles went limp. For me, it was a wonder drug.
I didn't ask any questions at the time. I was just grateful for the pain relief. But my parents were concerned from the beginning about the possibility of me getting hooked.
When they asked the pain management specialist about it, she was adamant that as long as I was taking it for legitimate pain relief, there was little chance of dependence. It would be after the pain had subsided that they would have to watch me carefully.
By the time I left the hospital I was in the process of being weaned off. The injections had been replaced by slow-release Fentanyl patches, which in turn would be replaced by little Fentanyl-laced suckers. Yes, suckers, like candy.
And then it was time to go off those too. My wounds were not completely healed, but they were more garden-variety, surface-type injuries and the pain was manageable with less extreme meds.
I had taken the painkillers as directed and was weaning off them properly, under a doctor's supervision. And yet those first couple weeks without any Fentanyl at all were kind of miserable. It wasn't so much that I was in pain. It was that I just felt sapped, fatigued, without any motivation to even get out of bed in the morning.
Those days passed and I eventually felt like myself again. But I had gotten a window into how easy it would have been to get hooked. To go drug-seeking, if I had been more mobile and under less parental supervision. To look for another doctor who would prescribe me more Fentanyl. To substitute something less regulated but similarly opium-based, like heroin. Scary.
So when people say we need to rethink the ease with which patients get opiates and the amount they get, I think back to those days and tend to agree with them. But then I think back to those days in the tank room and find myself hoping that the regulatory pendulum doesn't swing too far in the other direction, because these drugs really can make life tolerable for people who are experiencing intense suffering.
Clearly, when people who have a history of drug abuse and aren't trying to hide it get prescribed opiates with hardly a word of warning or a plan of action, there's a problem.
But by the same token, not every patient's pain can be effectively managed with harp therapy or trigger point injections.
So we need to have a really thorough, nuanced policy discussion before we make new regulations. That's the way to honor Prince. Here's hoping we're still capable of doing that.
Sunday, October 19, 2014
"Ugly laws" gone but the sentiment remains
Did you know that if I had been born a couple decades earlier, I could be arrested for appearing in public?
I didn't know either, until I saw the movie Music Within. It's about Richard Pimental, a man who becomes mostly deaf due to a Vietnam War injury and then spends the next several years devoting himself to helping people with disabilities get employment. I recommend it.
The one scene that really stuck with me was when Richard and his friend, who is wheelchair-bound and twitches due to severe cerebral palsy, are kicked out of a restaurant. The waitress rudely informs Richard that his friend is unsightly and is making the other patrons uncomfortable. More shockingly, when they refused to leave, they were arrested. Arrested under what was called an "Ugly" law.
Until the 1960s and 70s, apparently a number of large American cities had laws that made it illegal for someone with an "unsightly or disgusting" disability to appear in public. I was not aware of this despite some well-regarded literature on the matter.
I started thinking about how such laws could have affected me, with my scarred arms and stumpy hands. Could someone at a restaurant have called the police and had me hauled out? It seems almost unthinkable, but "unsightly or disgusting" is not very well-defined in these laws. They're subjective. What one person finds unsightly, another would not. This gives enormous power to law enforcement and allows for an enormous amount of bias.
Surely such laws were rarely enforced. But they were insidious nonetheless, in that they prey on fears that people with disabilities already have (or at least that I had when I first became disabled). Fears that we won't be accepted or able to participate fully in society.
Times seem to have change since the "ugly laws" were repealed. People with disabilities are less institutionalized and more visible in the community. The ADA and Medicaid waiver services that followed the Supreme Court's Olmstead decision helped. But changing laws, of course, doesn't change hearts.
This CNN story about Gophers football coach Jerry Kill proves we still have a ways to go. Kill has epilepsy, and after he had a seizure on television he received emails calling him a "freak" and a columnist at a major newspaper said he should be replaced because he was making the football team an object of pity. Kill has proven himself to be good at his job and epilepsy is a well-known part of the human condition. Why the hate? Why the derision?
I'm not sure what the answer is, but I think it has something to with a misguided sense of what is "normal," and a discomfort with anything that does not fit that template. This is, of course, warped. Humanity quite normally includes all sorts of variety in the way people look, move, speak, etc. But people are uncomfortable with that which they're unaccustomed to.
It is only in the last few years that I have gotten comfortable going out in public with short sleeves and have stopped trying to hide my hands in pockets. It took time to get to the point where my honest emotion was "If anyone has an issue with it, it's their problem."
But it's also a societal problem. And we all have a role to play in solving it. Reevaluate what you think is "normal" in the context of what you know is human.
I didn't know either, until I saw the movie Music Within. It's about Richard Pimental, a man who becomes mostly deaf due to a Vietnam War injury and then spends the next several years devoting himself to helping people with disabilities get employment. I recommend it.
The one scene that really stuck with me was when Richard and his friend, who is wheelchair-bound and twitches due to severe cerebral palsy, are kicked out of a restaurant. The waitress rudely informs Richard that his friend is unsightly and is making the other patrons uncomfortable. More shockingly, when they refused to leave, they were arrested. Arrested under what was called an "Ugly" law.
Until the 1960s and 70s, apparently a number of large American cities had laws that made it illegal for someone with an "unsightly or disgusting" disability to appear in public. I was not aware of this despite some well-regarded literature on the matter.
I started thinking about how such laws could have affected me, with my scarred arms and stumpy hands. Could someone at a restaurant have called the police and had me hauled out? It seems almost unthinkable, but "unsightly or disgusting" is not very well-defined in these laws. They're subjective. What one person finds unsightly, another would not. This gives enormous power to law enforcement and allows for an enormous amount of bias.
Surely such laws were rarely enforced. But they were insidious nonetheless, in that they prey on fears that people with disabilities already have (or at least that I had when I first became disabled). Fears that we won't be accepted or able to participate fully in society.
Times seem to have change since the "ugly laws" were repealed. People with disabilities are less institutionalized and more visible in the community. The ADA and Medicaid waiver services that followed the Supreme Court's Olmstead decision helped. But changing laws, of course, doesn't change hearts.
This CNN story about Gophers football coach Jerry Kill proves we still have a ways to go. Kill has epilepsy, and after he had a seizure on television he received emails calling him a "freak" and a columnist at a major newspaper said he should be replaced because he was making the football team an object of pity. Kill has proven himself to be good at his job and epilepsy is a well-known part of the human condition. Why the hate? Why the derision?
I'm not sure what the answer is, but I think it has something to with a misguided sense of what is "normal," and a discomfort with anything that does not fit that template. This is, of course, warped. Humanity quite normally includes all sorts of variety in the way people look, move, speak, etc. But people are uncomfortable with that which they're unaccustomed to.
It is only in the last few years that I have gotten comfortable going out in public with short sleeves and have stopped trying to hide my hands in pockets. It took time to get to the point where my honest emotion was "If anyone has an issue with it, it's their problem."
But it's also a societal problem. And we all have a role to play in solving it. Reevaluate what you think is "normal" in the context of what you know is human.
Sunday, May 11, 2014
What does April 28 have against the Marso family?
I probably should have known better than to schedule my dog's euthanasia for April 28. Might have been tempting fate. This year April 28 was the 10th anniversary of me being flown to KU Med almost dead because of a meningococcal infection. The date insisted on giving us yet another scare, as if the hardship of losing a pet wasn't enough.
Baxter has featured prominently in this blog before, so if you've followed it, you know the story: beloved pooch I adopted during my return to Minnesota after meningitis who helped me through my recovery; constant companion for years in Olathe and back in Minnesota for a year after I was laid off; then separated from me by graduate school and his bout with cancer in Jan. 2012.
After surgery that month to remove his tumor (and a chunk of his liver with it) Bax continued to live at home with Mom, Dad and Grandma, where he received tremendous care as further medical issues piled up. He already suffered from arthritis that caused him to limp on his back right leg. This got progressively worse until he was practically dragging the leg at times. Then he got diabetes, which severely restricted his diet and necessitated insulin shots twice daily. He usually tolerated them well, but there were a couple biting incidents. Luckily he was also having teeth removed due to gum decay during that period so there wasn't much bite to him.
About a year ago he started to go blind quite quickly, possibly due to the diabetes. That's when we started talking seriously about euthanasia, Mom and I. Well, maybe I more than Mom. Even though she was bearing the lion's share of the Baxter care, she had a hard time imagining letting the little guy go.
Baxter had always been pretty clingy, but losing his eyesight made him downright distressed any time there wasn't someone familiar within ear shot, or better yet, pressed up against him. Then he started to have bladder control issues and getting Mom up several times a night to go outside. Or not getting her up, which was worse.
That's a very long, probably unnecessary explanation to justify why I made the decision to euthanize my 15-year-old, arthritic, diabetic, blind dog. It was difficult.
April 28 just happened. It was the weekend after Dan and I got back from South America and the first feasible time I could be home to do what had to be done.
So I flew into Minnesota Friday night and spent the next couple days saying goodbye to my dog. Fortunately the weather was beautiful after months of Arctic winter that exasperated even the hardy Minnesotans. Bax and I enjoyed my parents' backyard and the river that runs through it, just as we had about 9 years earlier when I was in a wheelchair and he was my new dog.
Then Monday came, and I was scheduled to take Bax to the vet at 1:00 p.m. Mom and I were thinking about him that morning, I suspect, which is why neither of us thought much of the fact that my Dad, who is normally up by 7:30 or 8, was sleeping in quite late. Mom mentioned it, but it wasn't until just before 11 a.m. that she went to check on him.
In the interests of respecting my dad's privacy (sometimes I forget that not everyone wants to broadcast their medical issues), I'm not going to get into a lot of details about how he was. Suffice it to say, we were concerned enough that we drove him to the emergency room. I stayed there for a couple hours, phoning the vet to tell them we would be late on Baxter's appointment and might not show up at all.
Tests that day confirmed that Dad had had a stroke. But he seemed stable and while not quite himself, coherent. He was apologizing to me for screwing up my plans, which is classic Dad. Selfless.
With a plane to catch that night, I left the hospital, went home and retrieved Baxter from Grandma's room downstairs. I asked him if he wanted to "go for a ride in the car," which didn't perk him up as much as it used to when he was younger and it practically sent him into a lather. He struggled to stand up in his dog bed, straightening his legs slowly and then stretching. In previous trips home I had seen him try to get up and collapse back down, needing two tries to stand up. Another heartbreaking sign that it was time for him to enjoy his final repose.
He struggled into the backseat of the car, taking a moment to locate the doorway by poking around with his snout and then another moment to climb in, kicking his back legs futilely at first. In my mind I had imagined opening the windows for him and letting him stick his head out one last time, but it was raining that day and he didn't seem very interested. On the advice of the vet we had given him an oral sedative hours earlier and he was pretty zonked.
When we got to the vet I had to pick him up and carry him in, thankful for the automatic doors. A young female cashier at the front of the store looked at the fluffy, sleepy dog in my arms and immediately let out an "Awwwww." She clearly didn't know what we were there for.
The Banfield Pet Hospital staff did though. They had cared for Baxter for years, helping him live longer and better than he probably should have given all his maladies. They were sensitive that day, offering me as much time with him as I wanted before they proceeded. I didn't have much time and honestly I didn't want to drag it out. As it became more real the tears were starting to poke at the edges of my eyes.
I held Baxter in my arms as the staff placed a catheter just above his right front paw. He whined a little as it went in, but was otherwise still. I stroked his head and tears began to drop onto the soft fur of his back. I think somehow he knew, maybe, what was going on. Maybe that's crazy. But he seemed peaceful. As the first of the drugs went in his arm, he fell asleep and went limp. I was sobbing as they injected the second one, to stop his heart. The vet placed a stethoscope under his chest to check for the heartbeat that would never again come from there. She nodded to the vet tech and the two of them left me alone, in a small exam room, with my dog.
I sat and cried for a minute or two, maybe longer. Then I realized I was holding a dead dog. I lifted him up onto the metal table, his body even limper than before — the lifelessness was tangible. He was no longer Baxter. I laid him on his side on the table and tried to close the eyelids completely, like I'd seen on TV. But they didn't want to stay closed. So I left him like that and walked quickly out of the building, out to where the rain could hide my tears.
I wanted to go back and see my Dad, but I didn't have time. I had to pack up my stuff and head to the airport. My brother was going to drive me halfway there and then drop me with my uncle, who was nice enough to come down from the Twin Cities and retrieve me after it became clear that I didn't have a ride anymore.
Uncle Dennis tried to engage me in conversation, but I'm afraid I wasn't very receptive. I was praying for my dad, and posting a note on Facebook soliciting other prayers. The sporadic updates from my mom and brother were too mixed to know the results of those prayers. By the time we got to the airport, I was pretty distressed and really didn't feel good about getting on a plane and going 500 miles away from my family.
It was here that a small act of kindness by a total stranger made a huge difference. I told my uncle I wanted to try and change my flight and he accompanied me to the Southwest desk. I told the attendant there what was going on, that my dad was in the hospital and I wanted to postpone my flight. He asked me when I wanted to fly. I dithered.
"You don't really know, do you?" he asked, not impatiently, but in a way that suggested he had just understood my uncertainty.
I nodded and he read off a list of options. We settled on the next night.
"How much is the change fee?" I asked.
"Oh, I won't charge you a fee," he said, as he handed me my new reservation.
It was a small thing for him maybe, I don't know. But for me it made a big difference. And any money Southwest lost in not charging me a fee it will make up for many times over in my new loyalty to their airline.
That wasn't the end of the kindnesses. I told my employer I wouldn't be back for another day and my superiors understood and were completely gracious about it. Uncle Dennis promised to come up to St. Cloud and pick me up again the next day to take me back to the airport. Then he dropped me off at the Northstar stop, so I could take the last train out of the Cities to Big Lake, where I would then have to catch a bus to St. Cloud.
Or so I thought.
Almost immediately after Uncle Dennis dropped me at the train station I got a text from my friend Katie: "Just saw your FB post — prayers are being sent your way. I'm here for you if you need anything."
Katie lives in the Cities. I knew she could get me back to the hospital faster than the train/bus. So I called her.
"Can you drive me to St. Cloud?"
She didn't hesitate. It was an immediate "Yes." And again, I was so grateful. I have been blessed with so many advantages in my life, advantages that I had little or no control over — supportive family, 22 years of good health, stable community and nation in which to grow up. If there's one thing I can take credit for in helping create my success, though, it's picking the right friends. I marvel all the time at their loyalty and generosity.
So I was back in St. Cloud when Dad woke up that night in the hospital and said, "Hey, I thought you were gone." And I got to say "Don't worry about it Dad, Southwest was nice enough to let me change my flight."
"What about work?" he said.
"Don't worry about it, Dad, everything's taken care of. It's fine."
And I got to grip his hand with what's left of mine, holding on tight with a lonely right thumb made strong through 10 years of exclusive use. The roles we played a decade earlier were reversed, but the love was the same. He is the man I want to be.
By the next day he would be much better, almost miraculously better, and I would feel much better about going to back to Kansas.
But that night we sat by his bed and we tried to make sense of April 28.
"What is it about this date, anyway?" Dad asked.
"I don't know Dad," I said. "I guess it's the day when our family gets all the bad shit out of the way."
Baxter has featured prominently in this blog before, so if you've followed it, you know the story: beloved pooch I adopted during my return to Minnesota after meningitis who helped me through my recovery; constant companion for years in Olathe and back in Minnesota for a year after I was laid off; then separated from me by graduate school and his bout with cancer in Jan. 2012.
After surgery that month to remove his tumor (and a chunk of his liver with it) Bax continued to live at home with Mom, Dad and Grandma, where he received tremendous care as further medical issues piled up. He already suffered from arthritis that caused him to limp on his back right leg. This got progressively worse until he was practically dragging the leg at times. Then he got diabetes, which severely restricted his diet and necessitated insulin shots twice daily. He usually tolerated them well, but there were a couple biting incidents. Luckily he was also having teeth removed due to gum decay during that period so there wasn't much bite to him.
About a year ago he started to go blind quite quickly, possibly due to the diabetes. That's when we started talking seriously about euthanasia, Mom and I. Well, maybe I more than Mom. Even though she was bearing the lion's share of the Baxter care, she had a hard time imagining letting the little guy go.
Baxter had always been pretty clingy, but losing his eyesight made him downright distressed any time there wasn't someone familiar within ear shot, or better yet, pressed up against him. Then he started to have bladder control issues and getting Mom up several times a night to go outside. Or not getting her up, which was worse.
That's a very long, probably unnecessary explanation to justify why I made the decision to euthanize my 15-year-old, arthritic, diabetic, blind dog. It was difficult.
April 28 just happened. It was the weekend after Dan and I got back from South America and the first feasible time I could be home to do what had to be done.
So I flew into Minnesota Friday night and spent the next couple days saying goodbye to my dog. Fortunately the weather was beautiful after months of Arctic winter that exasperated even the hardy Minnesotans. Bax and I enjoyed my parents' backyard and the river that runs through it, just as we had about 9 years earlier when I was in a wheelchair and he was my new dog.
Then Monday came, and I was scheduled to take Bax to the vet at 1:00 p.m. Mom and I were thinking about him that morning, I suspect, which is why neither of us thought much of the fact that my Dad, who is normally up by 7:30 or 8, was sleeping in quite late. Mom mentioned it, but it wasn't until just before 11 a.m. that she went to check on him.
In the interests of respecting my dad's privacy (sometimes I forget that not everyone wants to broadcast their medical issues), I'm not going to get into a lot of details about how he was. Suffice it to say, we were concerned enough that we drove him to the emergency room. I stayed there for a couple hours, phoning the vet to tell them we would be late on Baxter's appointment and might not show up at all.
Tests that day confirmed that Dad had had a stroke. But he seemed stable and while not quite himself, coherent. He was apologizing to me for screwing up my plans, which is classic Dad. Selfless.
With a plane to catch that night, I left the hospital, went home and retrieved Baxter from Grandma's room downstairs. I asked him if he wanted to "go for a ride in the car," which didn't perk him up as much as it used to when he was younger and it practically sent him into a lather. He struggled to stand up in his dog bed, straightening his legs slowly and then stretching. In previous trips home I had seen him try to get up and collapse back down, needing two tries to stand up. Another heartbreaking sign that it was time for him to enjoy his final repose.
He struggled into the backseat of the car, taking a moment to locate the doorway by poking around with his snout and then another moment to climb in, kicking his back legs futilely at first. In my mind I had imagined opening the windows for him and letting him stick his head out one last time, but it was raining that day and he didn't seem very interested. On the advice of the vet we had given him an oral sedative hours earlier and he was pretty zonked.
When we got to the vet I had to pick him up and carry him in, thankful for the automatic doors. A young female cashier at the front of the store looked at the fluffy, sleepy dog in my arms and immediately let out an "Awwwww." She clearly didn't know what we were there for.
The Banfield Pet Hospital staff did though. They had cared for Baxter for years, helping him live longer and better than he probably should have given all his maladies. They were sensitive that day, offering me as much time with him as I wanted before they proceeded. I didn't have much time and honestly I didn't want to drag it out. As it became more real the tears were starting to poke at the edges of my eyes.
I held Baxter in my arms as the staff placed a catheter just above his right front paw. He whined a little as it went in, but was otherwise still. I stroked his head and tears began to drop onto the soft fur of his back. I think somehow he knew, maybe, what was going on. Maybe that's crazy. But he seemed peaceful. As the first of the drugs went in his arm, he fell asleep and went limp. I was sobbing as they injected the second one, to stop his heart. The vet placed a stethoscope under his chest to check for the heartbeat that would never again come from there. She nodded to the vet tech and the two of them left me alone, in a small exam room, with my dog.
I sat and cried for a minute or two, maybe longer. Then I realized I was holding a dead dog. I lifted him up onto the metal table, his body even limper than before — the lifelessness was tangible. He was no longer Baxter. I laid him on his side on the table and tried to close the eyelids completely, like I'd seen on TV. But they didn't want to stay closed. So I left him like that and walked quickly out of the building, out to where the rain could hide my tears.
I wanted to go back and see my Dad, but I didn't have time. I had to pack up my stuff and head to the airport. My brother was going to drive me halfway there and then drop me with my uncle, who was nice enough to come down from the Twin Cities and retrieve me after it became clear that I didn't have a ride anymore.
Uncle Dennis tried to engage me in conversation, but I'm afraid I wasn't very receptive. I was praying for my dad, and posting a note on Facebook soliciting other prayers. The sporadic updates from my mom and brother were too mixed to know the results of those prayers. By the time we got to the airport, I was pretty distressed and really didn't feel good about getting on a plane and going 500 miles away from my family.
It was here that a small act of kindness by a total stranger made a huge difference. I told my uncle I wanted to try and change my flight and he accompanied me to the Southwest desk. I told the attendant there what was going on, that my dad was in the hospital and I wanted to postpone my flight. He asked me when I wanted to fly. I dithered.
"You don't really know, do you?" he asked, not impatiently, but in a way that suggested he had just understood my uncertainty.
I nodded and he read off a list of options. We settled on the next night.
"How much is the change fee?" I asked.
"Oh, I won't charge you a fee," he said, as he handed me my new reservation.
It was a small thing for him maybe, I don't know. But for me it made a big difference. And any money Southwest lost in not charging me a fee it will make up for many times over in my new loyalty to their airline.
That wasn't the end of the kindnesses. I told my employer I wouldn't be back for another day and my superiors understood and were completely gracious about it. Uncle Dennis promised to come up to St. Cloud and pick me up again the next day to take me back to the airport. Then he dropped me off at the Northstar stop, so I could take the last train out of the Cities to Big Lake, where I would then have to catch a bus to St. Cloud.
Or so I thought.
Almost immediately after Uncle Dennis dropped me at the train station I got a text from my friend Katie: "Just saw your FB post — prayers are being sent your way. I'm here for you if you need anything."
Katie lives in the Cities. I knew she could get me back to the hospital faster than the train/bus. So I called her.
"Can you drive me to St. Cloud?"
She didn't hesitate. It was an immediate "Yes." And again, I was so grateful. I have been blessed with so many advantages in my life, advantages that I had little or no control over — supportive family, 22 years of good health, stable community and nation in which to grow up. If there's one thing I can take credit for in helping create my success, though, it's picking the right friends. I marvel all the time at their loyalty and generosity.
So I was back in St. Cloud when Dad woke up that night in the hospital and said, "Hey, I thought you were gone." And I got to say "Don't worry about it Dad, Southwest was nice enough to let me change my flight."
"What about work?" he said.
"Don't worry about it, Dad, everything's taken care of. It's fine."
And I got to grip his hand with what's left of mine, holding on tight with a lonely right thumb made strong through 10 years of exclusive use. The roles we played a decade earlier were reversed, but the love was the same. He is the man I want to be.
By the next day he would be much better, almost miraculously better, and I would feel much better about going to back to Kansas.
But that night we sat by his bed and we tried to make sense of April 28.
"What is it about this date, anyway?" Dad asked.
"I don't know Dad," I said. "I guess it's the day when our family gets all the bad shit out of the way."
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