the usual

“we usually just get pizza” my boss told me of food for student workers.  We were discussing the transition of supervising student workers to me, temporarily, since our staff member who currently does this is leaving next week for another position.  I had told my boss that I wanted to have a meeting with the student workers to talk about the transition, scheduling needs, work priorities, and things like my sick policy and my health.  More on that later.

Back to food.  I am not one to think that all work events must have food, not anymore at least.  Too difficult to figure out what I’d eat, so it doesn’t come to mind as a meeting essential.  But my boss raised the idea and offered to spring for it.  Ok.  So food.  “Can I do something other than pizza?” I asked.  “Sure….”  Although it wasn’t on my mind consciously at that moment, I remembered later that one of our workers has Celiac Disease and needs gluten free.  Not only is this a known requirement, but it’s one that the school has screwed up on…hosting events that she’s required to attend without providing an option.  And then there’s her mom.  Her mom called our office one quiet summer day and we ended up talking for over an hour about a number of things, including how discouraged it made her daughter to go to school events with no option for food…while everyone else eats.  And lastly, there’s my own recent experience with being told I had to go to work events which were food-centric (“must attend all social events” said one work document addressed to me this past year) but where I could not eat anything.  It sucks and I’m damned if I’m going to pass that crappy non-option on to someone else.

And now I’m wondering…what to get for food.  Or just dispense with the food thing entirely.

It is nearly Halloween, so some kind of Halloween themed food or candy seems appropriate.  But  here’s the thing.  I am woefully ignorant of gluten free options.  Having determined through both empirical and lab test means that I am not gluten intolerant, and having not hosted in a looooong time, I really don’t give it much thought in my life.  And so I am asking you, dear reader, if you know of easy, tasty gluten free snacks or food, let me know!  I’m thinking I’d rather stay away from cooking.  I have nothing against the idea, but with people of this age, home cooked is not usually their favorite option.  Also, there are liability issues I think with bringing in your own, homemade food.  So I was thinking maybe Trader Joe’s or Whole Foods had some good gluten free baked goods or other goodies that I could pick up and bring in but again, given my ignorance, I wouldn’t know what’s good and what’s not in the panoply of pre-packaged gluten free options out there.

I welcome your ideas, recommendations, and suggestions to make this an inclusive (and tasty) event.

Now, as I said, the agenda is going to include my health.  This is because one of the student workers has made a bit of a habit of asking me stupid questions or making insensitive remarks to me that relate to my health.  Like asking me at top volume in an office full of people if I’m going to be out “again” next week.  When I tried to dodge his question, he kept pressing.  Finally, I asked him why exactly he wanted to know and he said he was just wondering if he was going to have to cover for me.  Me.  A full time professional staff member with very specialized skills.  Him, a relatively unskilled undergrad who spends a lot of work time watching TV shows on his mobile devices.  Yeah, you go on and just try to “cover” for me, boyo.  I’m more than a pulse in a chair.  Most recently, I came upon him watching TV at work and enlisted his assistance in clorox wiping down tables and desks.  It’s a busy time of year, we have students in and out all day.  Many of them are taking exams with us, and given the time of year, many of them are taking their exams sick – we had one who had to run out in the middle of a test to go puke (a stomach bug’s been going around up here).  And then there is the non-negligible number of students we serve who have chronic health problems that affect their immune systems.  I preface with all this to give you a sense of WHY I think that wiping down the surfaces with clorox wipes is a good idea.  So, we’re wiping.  I do a bunch of desks and keyboard/mouse sets and this student is slowly wiping a conference table. I finish up and say “here, I’ll help” (it’s a big table).  There are several piles of eraser debris and I hit them with the wipe and they scatter and smear across the table and onto my pants.  “Oh, gross, eraser crud” I say, wiping at the bits with my bare hand.  The student stops wiping and says “‘Gross?’  Are you a germ-phobe?”

Oh he got a bit of a talking to.  I mentioned this all to my boss at our meeting and said that I wanted to have a talk with him.  She said “Do it.  Set him straight.  And let him know that I want everything wiped down every day too…”

So the meeting’s agenda will include the topics of invisible disability in the work place, how not to make an insensitive idiot of yourself when dealing with a coworker with a disability, and what keeping a “safe, healthy, and welcoming” office means.  Can’t wait.  😉

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the slippery slope

Today’s news brought to mind issues of stigma, how revealed traits and social ties can help to knock it down, and the difficulties of being charged with that task.

The news item I’m referencing is the story that an apparently prominent U.S. republican senator has come out in favor of same sex marriage.  He attributes this break with this element of his party’s widely held and harshly wielded platform to the somewhat recent knowledge that one of his sons is gay.

“My son came to Jane, my wife, and I, told us that he was gay, and that it was not a choice, and that it’s just part of who he is, and that’s who he’d been that way for as long as he could remember,” said Portman.

What was the Republican senator’s reaction?
“Love. Support,” responded Portman.

From One conservative’s dramatic reversal on gay marriage, By Dana Bash, CNN Chief Congressional Correspondent, March 15, 2013.

This has sparked a debate among my friends on Facebook. Not about whether same sex marriage should be legal.  With the exceptions of a few inlaws hanging out in my “friends” list, I can say with certainty that 100% of (the rest of) my friends on FB are pro-gay marriage.  I do not FB friend indiscriminately.  Despite having been on FB for a long time, I have fewer than 100 friends and that number stays relatively stable.  The debate has been along the lines of “oh now that this guy has a son who is gay, he’s ok with gay.  Hypocrite!” vs. “when things affect us personally, our world view changes…”  I come down on the side of the latter, although I have to claim that I had the “hypocrite!” reaction too.  That was my initial reaction, soon followed by the recognition that it is through social interaction that humans develop a sense of “other” and it is through meaningful social interactions and positive connections that we develop a sense of acceptance for those “others”.

Part one:  Invisible chronic illness (ICI) comes with intense stigma.  Disease is stigmatized, but there is increasing tension if the illness is invisible, chronic, and if “the afflicted” is female.

If the trait is considered bad, then the person with it is considered bad.  That is my quick and sloppy definition of stigma, which holds for not so clearly “sinful” traits as well (see Part Two below).  So what’s the stigma of the ICI?  The stigma is twofold.  There is the “disease = bad” that all people with an illness or a disease-perceived disability deal with.  For those with a chronic illness, there is the added issue of their illness going against the collective disease narrative which people without a chronic illness have constructed for themselves (and everyone else).  You get sick.  You get better.  The end.  Chronic illness, chronic evolving illness, violates this and it challenges people.  And the common unexamined reaction to that challenge is to get pissed off.  Pissed off at yourself if you’re “the afflicted” for not being able to do what you used to be able to do, or for doing something that makes things worse because you try to do what you used to be able to do…etc.  Pissed off at your coworker, e.g., for taking so much time off this month.  And so on.  For a chronic, evolving illness which is invisible (or largely invisible), the stigma manifests in reactions which state or suggest that “the afflicted” is not afflicted with anything save a desire to cop out, get attention, get a break, complain, openly express feelings that we are supposed to lock up (disappointment, frustration, anger, fear, sorrow).  If you can’t see it or quantify it in a lab value, you can easily believe that the afflicted is looking for a pass on social requirements.  And this explains why women with ICI are so extra screwed.  The first woman most of us know is mom.  Mom is a special kind of saint.  Mom makes food for you from her body.  Mom changes your diaper when its full, relieving you of a set of what must be truly unpleasant sensations.  Mom picks up after you.  Oh I know, there are bad mommies out there but let’s use those exceptions to prove the practically universally held concept of MOM, which is one that starts and becomes fixed at a quite young age, when MOM exists to serve and love you.  Mom does NOT walk into the room and say “you know what kid?  change yourself!  I’m exhausted and can’t even stand up right now let alone deal with your diaper full of poop.”  When moms are shown doing or reported to have done anything other than being that serving MOM, there is undisguised public revilement (I say public because while people seem to feel a deep and rewarding compulsion to jump on the “bad mommy” bandwagon in public responses to abuse and neglect by a mother, few of them are willing to actually do things to make this abuse and neglect less likely to happen).  A woman is a potential MOM.  It is part of what defines her as a woman.  And a MOM who doesn’t make dinner, who needs help with the laundry, who doesn’t put the secondary social needs of her relations over her own physical well being, who doesn’t act/talk/look gracious and effortless in doing what she should properly do is a BAD MOMMY.  You put a woman with an ICI into any social context and you will very quickly see both internal and external struggles about power and efficacy all of them with the threat of being labeled as selfish (the cardinal sin of MOMs) lurking around every corner.

So many women I meet, virtually or in person, who have an ICI seem to have at least one significant source of unsupportive, stigma enforcing people in their lives.  Often, there’s at least one source per sphere.  Some at work, some at home, some friends, some at the doctors’ offices, some extended family.  I wonder sometimes, about myself, if the source is actually me.  Am I just projecting my internal struggles with feeling like I fall short of what I want to be and do onto others?  Yes.  I know I am.  But this doesn’t mean that there aren’t also people out there who are quick if not happy to also judge me negatively for displaying traits of an ICI.  The two feed on each other.  This is the slippery slope.  It doesn’t take much evidence of unsupport for me to get into a nasty cycle of feeling bad about me and feeling bad about others.

Part two:  I think support doesn’t come without love, and I wonder if you can have love without support.

I personally feel the answer is no.  I realize that this goes against what we are told, what is codified in the saying of “love the sinner, hate the sin”.  I am reflecting on ICI because it is my own personal experience but also because it shares the features of concealable and unchosen with sexual orientation, what kicked of this meandering.  Knowing and loving someone with an ICI bestows a better understanding of the experiences from perspectives ranging from first person (the observed “afflicted” beloved), to second person (the experiencing belover of the “afflicted”), and even to filtered third person (the doctors, the extended family, the coworkers of the “afflicted” beloved and belover).  That understanding extends beyond the immediate relationship and to others who are in similar contexts.  Consider the old friends I connected with around Christmas this year.  If you aren’t up for following the link to that post, the short version is I that despite disclosing, I experienced a relatively warm and supportive interaction with some friends who I hadn’t seen since before I was a person with an ICI.  I suspect a lot of this was due to the shortness of the interaction, but I felt some of it came from the fact that one of the more socially leading of this set of friends has a son who was born with a heart defect.  This was cause for a health crisis immediately after the son’s birth and has become an ICI now in the child’s older years.  And not to disparage my friends, but I suspect that lacking that experience, they would not have been as supportive and warm.  I strongly feel it is human nature to be cruel about things you don’t understand.  We are wired to judge quickly, even to prejudge, and to act on those judgments.  And from that wiring comes behavior we classify as bias and bigotry in otherwise “nice” people.*

I think that support comes from love, even if it is not for the exact person supported.  My friend can love his son who has an ICI, support his son who has an ICI, and extend some of that support to me.  And my husband can love me, support me, and extend that support to others with ICIs.    But what about the people who love someone with an ICI but do not support them?  Me, I’d argue that they don’t truly love.  Maybe they don’t truly love that person.  Or maybe they don’t truly love.  Maybe they have some predisposition to narcissism, some inherent limitation of empathy, too much resentment for anyone else who they think is “getting a break” while they are left to struggle with their own personal burdens.  All of these things are impediments to caring about anyone to the degree that you  care about yourself.

Part three:  You  cannot change minds if you don’t disclose but god damn, it sucks to be the one disclosing.

I have and still do try to deal with the stigma through concealment.  I try not to disclose or I am consumed by managing who I disclose what to.  This is because I used to be a much more open person.  I assumed others were as willing as I was to listen to other people.  I present as evidence my past belief that when people asked “how are you?” they really wanted to know.  I really wanted to know when I asked. I wouldn’t have asked if I hadn’t, or if I hadn’t had time.  Oh but the glazed looks on people’s faces finally sunk in.  Hey guess what?  For the most part, they don’t give a shit.  They are not asking a question.  They are making a salutation.  The two are not the same.  Amazing that it took me a degree in linguistics and nearly 30 years of life to figure this out.  Now I ask and answer this “question” with impunity.  “Great!”  or “not bad!”  I’m glad I figured this out before I got sick.  I do feel the tension when a coworker – who has been affected by a recent schedule change due to my ICI – asks me the next time they see me “how are you?” I do feel a twinge of “oh crap…do I play it cool and provide the socially acceptable but factually inaccurate answer which might, if they are thinking about it, make them wonder “well if you’re fucking ‘great’ today, why the hell weren’t you here yesterday afternoon?!” but at least I know I have a choice in how to answer.  More often than not, my answer in such a situation is a compromise between socially acceptable and factually accurate response, i.e. “alright, thanks…and you?”  It is one of the strategies of concealment which anyone with an ICI understands.  Concealment can work for a short time, for interactions limited by short duration or infrequent occurrences.  Over time there comes a point where even if I am working really hard to hide my ICI, it shows.  I might pass out.  I might have to take my shoes off or put my legs up because my blood is pooling in my feet and they feel like they are on fire.  I might not be able to walk as fast as my colleagues when we are leaving the office at the same time to attend a meeting nearly a mile’s walk from our building.  I might choose not to leave at the same time so I don’t have to worry about being seen to not keep up, which might make me seem to be anti-social.  I might have to leave work early for a doctors appointment, or come in late because I didn’t factor the hour lost to an unexpected vagal episode into my morning routine.  I might not be able to take a trip to California to see my inlaws.  I might have to cancel my vacation and answer questions at work about why I canceled it.

I have also tried to deal with the stigma through disclosure and trying to force acceptance on myself and others.  This, I am not so good at.  My use of the word “force” is not accidental.  I’d like to say “engender” but the reality is I have no idea how to do something so subtle.  I am largely graceless in my attempts to play the respectable sicky.  Some of this is just my nature, me pre-sick. I’m really much more of a “yeah that’s what it is, so what are you gonna do about it?” person when it comes to protecting the weak, which now includes me.  However, I have mellowed with time.  I have a few more tools in that toolbox.  But when it comes to me and my illness, that toolbox is waaaaaay out of reach on account of the piles of self recrimination, disappointment, frustration, and grief which I have surrounding my own feelings about me and my broken, bastard of a body.

Here’s what I do know though.  My husband loves me.  And he supports me.  He is now one more person, like my friend with the son with the heart defect, who will be an ambassador for people like me.  The more people I can get in my corner, the more people I can get in all our corners.  When I can, I will come out.  And when I can, I will build allies, even if they are only temporary.  It helps to feel like I am doing this for more than myself.

Ok, well I’m done for now.  Now, I’m off to shower up and then go for an upper endoscopy to find out why my body is playing this new trick of unending, intense nausea.  Here’s hoping there’s an addressable answer in my stomach and that it’s not just one more unmeasurable and therefore invalidated new fact of my life.

* it would be a gross oversimplification to misapply this to explain all bias and bigotry.  What I’m describing is the human tendency (and perhaps evolutionary necessity) to take cognitive short cuts which can lead to carelessly cruel behavior that is the sort of unintentional bigotry we all have experience with.  I do not think that this or this alone can account for intentional cruelty and abuse.

Out at work

We had a staff meeting yesterday.  Towards the end, my boss announced that another department is doing a “fitness challenge” and wanted a volunteer from our office to participate.  I’m a little fuzzy on all the details but the general gist is this.  All departments recruit at least one member to sign up for a certain time period of semi-public sharings about how many times they took the stairs, walked a mile, ate some kale, shit like that.

This is so not me.

My boss said “I did it last year and it was a pain in the ass, so I’m not doing it this year.” and then we went around the room and each of us tried to get out of it in various ways.  Our office coordinator, an unbelievably cheerful and accommodating person, said “I already was recruited by X department” (she has a lot of friends in X department) “and last year I did it with Y”.  Assistant director didn’t say anything, but put his finger on his nose, the universal gesture of “not it!”  So, me.  “I’d do it if I could think of some way to adapt it to me and my health stuff, but let’s see, taking the stairs?  Not something I do.  Food?  Let’s see, I can’t eat before noon, so the whole ‘healthy breakfast’ thing is out…and there’s an increasing number of things I can’t eat, many of them are what’s considered ‘healthy’.  I don’t know how I’d do this without a mass disclosure of a lot of health stuff, and while I think it would be good for people to have the educational experience, I’m not sure that I want me and my body to be the lesson in such a public way.”

So, in other words, “not it!”

It makes me apprehensive to have to bow out of these sorts of things.  I worry that at some point, I will be seen as taking too many liberties, too many “special” circumstances.  But damn, it’s work, you know?  I need my energy at work for WORK, not for sprinting up and down flights of stairs while the training montage music for Rocky plays.  My big “fitness” challenge is managing to do my PT exercises, and you know, I’m just not in the mood to share those with the group.  I have to deal with public judgement in a bad way almost daily.  Why ever would I sign myself up for participation in an activity where my abilities will be officially compared to my (mostly healthy) peers?  That’s like inviting a really bad day, every day.  No thanks.

migrainous? they don’t even know us!

Ba-dum-dum.

Migraines are like a bad joke.  Have five days off of work?  How about a migraine?  Feeling better and  thinking you’ve turned a corner on the health stuff?  Boom, have a migraine!

I blame the massive weather shift that brought a 30 degree temperature drop, high winds, and (the all important) pressure shifts.  Sitting in my living room with the lights dimmed, sunglasses on, and my phone’s display set to the lowest brightness I can get, I found myself looking up weather and migraine.  I found the most absurd “article” on it at the Mayo Clinic.  Normally, I like their patient info pages.  They’re better than Web MD, for example.  But they do fall short here and there.  E.g., if you look up “blood pressure” and select the Mayo link that says in the search results “Blood pressure chart: What your reading means – MayoClinic.com – blood pressure chart can help you understand what your blood pressure reading means.” you are taken to a page that gives the following information:

Here’s a look at the four blood pressure categories and what they mean for you. If your readings fall into two different categories, your correct blood pressure category is the higher category. For example, if your blood pressure reading is 125/95 millimeters of mercury (mm Hg), you have stage 1 hypertension.

Top number (systolic) in mm Hg   Bottom number (diastolic) in mm Hg Your category* What to do**
Below 120 and Below 80 Normal blood pressure Maintain or adopt a healthy lifestyle.
120-139 or 80-89 Prehypertension Maintain or adopt a healthy lifestyle.
140-159 or 90-99 Stage 1 hypertension Maintain or adopt a healthy lifestyle. If blood pressure goal isn’t reached in about six months, talk to your doctor about taking one or more medications.
160 or more or 100 or more Stage 2 hypertension Maintain or adopt a healthy lifestyle. Talk to your doctor about taking more than one medication.

Can anyone tell me what’s wrong with this picture?  A blood pressure of 80/46 is apparently normal and you should maintain the healthy lifestyle that you currently have.  Yep.  No need to worry that you might fall down or pass out.  You’re fine!  Because you’re not hypertensive!  Of course, when you look around a little more, you’ll see that although the page is titled “Blood pressure chart: what your reading means”, there is a superordinate heading that reads “High blood pressure (hypertension)”  When you search for “low blood pressure” on the Mayo site, you don’t get a chart with ranges or “what to do”.  Nope.  You get a front page that tells you that “In severe cases, low blood pressure can be life-threatening.” but then goes on to tepidly describe that “blood pressure varies from person to person, a blood pressure reading of 90…or less systolic blood pressure…or 60 mm Hg or less diastolic blood pressure…is generally considered low blood pressure.”

This is a lot like what happens when you look up BMI on the web.  Even reputable sites have a skew towards discussions of obesity and high BMI.  If you’re underweight, well, apparently you can go fuck yourself.  There are two categories above normal but one below.  Apparently there is no difference between being a little underweight and being a walking skeleton with a host of serious health risks.

I should not have been surprised to see that their page titled “Migraines:  are they triggered by weather changes?” was so bad that it made me laugh.  Here was the part that I just laughed out loud at, emphasis added by me.
If you feel your migraines are triggered by weather, you may be understandably frustrated. After all, you can’t change the weather. However, you can learn which weather changes start a migraine and take steps to lessen their effects:

  • Keep a headache diary, listing each migraine, when it happened, how long it lasted and what could have caused it. This can help you determine if you have specific weather triggers.
  • Monitor weather changes and avoid triggers if at all possible. For example, stay indoors during very cold or windy weather if these factors appear to trigger your migraines.
  • Take your migraine medication at the first sign of a migraine.
  • Make healthy lifestyle choices — eat healthy foods, exercise regularly, get enough sleep and keep your stress under control. These factors can help reduce the number and severity of your migraines.

 

I was indoors all damned day Monday, and hey guess what?  It found me anyhow!  There’s really fuckall you can do about migraines triggered by pressure changes.  Truly, not a damned thing, other than up your prophylactic meds, try like hell to avoid any other triggers that are within your control, and clear your schedule.  If I had to write that, here’s what I’d write.

If your migraines seem to be worse or occur more frequently during certain weather, here are some you can steps to take to make sure you don’t drive off a cliff, get horribly and embarrassingly ill at work or in public, fall over and hurt yourself, or vomit on someone:

  • Keep a headache diary, listing your migraine symptoms and how you felt in the 12 hours preceding it.  This will make you feel like a hypochondriac but it can help.  It will help you to identify “prodromal symptoms” – i.e. early warning signs that a migraine is coming on and which you can then use as a signal to slow down, get someplace safe, dark, and quiet, and medicate if necessary.  It can also help you to figure out if your migraines have any rhyme or reason at all or if they just take you at any old time and fuck up your life.  
  • Monitor weather changes and plan accordingly.  If you find that severe temperature exposure is a trigger, try to stay in a temperature controlled environment as much as possible.  Your friends and associates will think you’re a pussy, but tough shit.  It’s your head and body, not theirs.  If you find that pressure changes trigger migraines, you’re just screwed unless you have access to a hyperbaric chamber.  Stay home and medicate.  
  • Take your migraine medication at the first sign of a migraine, but if you get migraines too often, a smarty pants doctor  will tell you that your medication use is triggering your headaches through rebound.  Ha ha!  Joke’s on you.  
  • Make healthy lifestyle choices.  They may not help if you have chronic daily headache, but at least you’ll look great!  Also, when you see that sanctimonious, smarty pants doctor who thinks that all you need is a can do attitude to overcome your chronic health problems, you will be able to tell him that you eat healthy foods, exercise even when you’re dizzy and pukey, take ambien to fall asleep when your migraine comes with insomnia, and live a pampered life of luxury that includes being unemployed, childless, and surreptitiously medicating your family and friends with mood stabilizers to keep them sane and stress free.  Congratulations.  You may still have headaches and other migraine symptoms but hey, gold star for effort!

Do I sound bitter?  I guess it’s three days of migraine.  Sunday, Monday, and yes, Tuesday at work a big fat migraine.

standing by

I wrote a little while ago about being involved in a medical emergency at work (the link to that post is here).  I wondered what to call this social phenomenon of people assuming someone else will act and so failing to do what is needed, what is practically and morally required.  Turns out there is a term of it, the bystander effect.  And it’s in the news today, in a medical context.  A news story has been picked up, based on a New England Journal of Medicine article, about doctors at Yale-New Haven Hospital failing to treat an acutely ill patient who, no surprise, got sicker.   Too many doctors, specifically too many specialist groups, and no one coordinating the care.  No one making the calls.  No one designated, and therefore no one taking on, the role of pulling it all together and actually taking care of the patient.  Oh they ran tests, and apparently each team spent quite a bit of time talking about the patient.  But, according to the news story, no one took the needed steps to treat the man.  What I found particularly interesting was this part:  “Our inability to easily name his disease process quickly created ambiguity about ‘ownership’ of the patient,’‘ the authors said.

Let that sink in for a moment.  To me, this article could have been titled “why patients should care about having a diagnosis” or “what’s in a name?

I am going to ask hubby to get me access to the NEJM article and then I am going to make copies of it for the doctors I see who complain about patients who want a name for an illness.

Two great points in one article.  Let’s hope the medical community takes notice.

 

Link to the original article in NEJM, you need a subscription to access it.

What’s in your gut?

Icky but cool – cool from the perspective of open source data.  I don’t think I’ll be participating since god knows my gut gets enough study as it is, but I thought I’d share this because I find the research model extremely interesting.  I’m also certain that my primary care is going to flip over this.

From the project site:

http://www.indiegogo.com/americangut

The Human Microbiome Project and other microbiome projects worldwide have laid an important foundation for understanding the trillions of microbes that inhabits each of our bodies. However, opportunities for the public to get involved in such research has been limited. Now, American Gut gives you an opportunity to participate and to compare the microbes in your gut to those in the guts of thousands of other people in the US and elsewhere. American Gut is a project built on open-source, open-access principles. Our data are for the good of understanding and will be shared both with participants and with other scientists. Our experience has been that our best ideas and work come when we involve people in as many steps of our work as possible, be they scientists, educators, roofers, ultra-marathon runners or corporate leaders. Everyone has something to offer, whether their sample, their hypotheses, their analyses or their dog (yes, their dog, we will get back to that). The more we can understand the complex microbial ecosystems on which we depend, the more everyone will benefit.

  • 10,000 people needed – join us!
  • Our Team: 30 scientists with over 800 publications
  • See how your microbiome compares to our community and learn how you might achieve an optimal or more healthy gut
  • we start mailing out the PERKs (kits) in January

What is American Gut?
You’ve probably heard by now that the trillions of microbes living on and in our bodies are changing both the way we think about health and disease and even how we define Self. Ever wonder what’s in your gut? Ever wonder how your diet might shift your gut microbes (for better or worse), or how simple lifestyle decisions may have a dramatic impact on your gut and overall health? Ever wonder which microbes on your husband sometimes make him smell funny?

The gut is our main focus, but it is also interesting to look at oral, skin and even vaginal communities for several reasons. It might be possible to develop biomarkers–canaries in our corporeal coal mines that let us predict aspects of your gut health based on a spit sample or a reading (swabbing) of your palm. We know, for example, that arterial plaque shares microbes with the mouth but not with the gut. Could we use plaque samples to predict features of our hearts? Maybe.

Noro-huh?

There’s a norovirus going around my region right now.  It hit just in time to come back with the kids from winter break.  And it’s going around my school.  1/3 of the students I supervise have had it in the last week.  Every day, I get at least two cancellations (usually in the form of “no shows” then info later) on the services I provide due to the puking-pooping horror that is this intestinal bug.

And they have no idea what this is.  I mean the kids have none.  One of them said to me yesterday “Well, I’m still not feeling good.  Still having diarrhea” (he’s a bit of an over-discloser) “but I figured I can work with Sandy because she’s on a ton of antibiotics.”

Now, Sandy had a tooth abscess last week because she didn’t take the antibiotics her dentist ordered for her when she saw him the week before for a cracked tooth.  One trip to the ED later, she is now on antibiotics.  “The stomach bug that’s going around is viral” I tell the over-discloser.  “She can catch a norovirus while she’s on antibiotics.”

This is ridiculous.  They make these kids take health classes, where they talk about sex, sexuality, sexual development, alcohol and substance use, and various other associated “hot button” topics.   They do not, apparently, talk about stuff like “hand sanitizer is all well and good but there’s no substitute for washing your hands” or “if you start an antibiotic you finish and antibiotic” or the difference between viral and bacterial infections (e.g., “you don’t need antibiotics for the flu or a cold”).  I think they should.  How much nicer would it be for ye olde primary care/family doc if people were getting a good dose of education about simple stuff like this?

What I keep wondering is why our health services hasn’t sent out an announcement about the virus.  Even months after the original H1N1 outbreak, when they knew it wasn’t likely to be as bad as it had seemed initially (or as it had been hyped, take your pick), we were inundated with weekly emails about it, a list was started for staff or faculty to report students with “flu like symptoms” (which we still have, btw), and we were all encouraged to stay home until we were symptom free for at least 24 hours.  But here we are with a quite aggressive intestinal virus zipping through the dorms and classes and the school is mute.  Kinda confirms my theory that college health services are about equivalent to a first aid tent staffed by boy scouts at a town fair (my own experience with them comes from both being a student at three different schools and from working at one as an undergrad).

How it helps

My second semester teaching, a student’s mother emailed me to tell me that her daughter had been diagnosed with acute appendicitis and was recovering from surgery.  The student, when she returned (which was rather promptly) was very responsible about getting in touch on making up work she missed, but was clearly overwhelmed.  I talked with her about it and it seemed that some of her professors were being a bit turdish about her missed classes and assignments.  We came up with a plan to get her work for me under control with a timeline based on what she and I both considered reasonable.  I ended up substituting some in class work with different assignments that she could do independently from home/dorm.  I now know that what I was doing is called a “modification” under disability accommodation processes.

Several years later, another student was identified to me as a “student with a disability” by our office of disability services.  The nature of the disability was not disclosed (as is proper) but the accommodation of “extra time on quizzes, tests, or exams which can be taken with you in class or at our office” was listed.  The student opted to take them in class, and I restructured the lesson plan on test/quiz days to do the assessments at the end of class to avoid the awkwardness of everyone sitting there done while one student kept working on the test.  Despite what I thought was a good effort with my class in promoting an open and respectful atmosphere, this student started acting out in class during lecture.  He postured and made snide remarks during my lecture.  When he started in on another student (who was, yes, that person who always has her hand up with a helpful or insightful comment), I told him to meet with me after class.  I asked him what was going on, why he was being so mean and crabby.  “I can’t see the damned slides” he said at one point, and the note taker had been flaking on him, not providing notes in a timely manner.  I had switched recently from lecture only to lecture plus powerpoint and it seems that the nature of my student’s disability was visual.  “I can see things if they are near and big with a lot of contrast” he told me.  I was thunderstruck.  Why hadn’t the disability office given me better guidance?  What the hell was the deal with “extra time”?  This kid could do tests, quizzes, and exams in a normal amount of time with half the frustration if I just pumped up the font size!  And I could do handouts, one slide per page, for when I was presenting by powerpoint.  I asked him if either or both of these accommodations would help and he said yes.  To avoid the class seeing him getting the powerpoint packet and wondering about “special treatment”, I made handouts for everyone.  This is called “universal design”.

I am not certain I would have been as willing or sympathetic to these students needs if I hadn’t been struggling with an invisible disabling illness myself.  And I now tell people, when I’m feeling open enough to discuss this sort of thing with them, that of all the shitty things that come of being sick, this is one of the few ways that it has helped.  I had a personal reference for empathy with these people, which I think helped me in making what aspects of their educational opportunities I controlled be more accessible.

take your virus to work day!

Part of my job is supervising 11 student workers.  Most of them are new members of the work force, i.e., if they’ve had jobs before, they were jobs like babysitting, pet sitting, working in mom and dad’s office, being paid under the table for construction/contract work through a friend of the family, etc.  The debate of “call in or come in” has not been one that most of them have engaged in.  Each year, we address it.  Sometimes multiple times, most often provoked by a student showing up looking like crap, dragging, and exhibiting flu-like or cold symptoms.  As was the case yesterday.

Yesterday’s student was having chills “I’m hot and cold” he told a staff member who had just asked him to do something that involved going outside.  I asked him if maybe he should sign out and go home.  He said no, and that “I’m not really sick yet, I just feel like I’m coming down with something.  But I can still work, I don’t feel that bad.”  And to him I replied “I’m glad you don’t feel that bad yet.  But let me explain something to you about my philosophy on coming to work with something that is quite likely contagious….”

And then he got an earful about responsibility to his coworkers, to the people visiting or meeting in this building, to the people he might be asked to work with during his shift.  “You know that some people are immunocompromised, right?  So what for you is a cold, for them could result in a pneumonia.”  I went on to explain that if a student had a chronic condition that wasn’t communicable, like allergies, then I wouldn’t ask the student to stay home if he or she felt ok enough to work, but that if a student had a stomach bug, a cold, the flu, strep then that student should stay out of work until they were feeling better  “a good rule of thumb is that you be symptom free for 24 hours”.  I added that I am happy to give them hours later when they were feeling better to make up the lost time and money, if they wanted it.

I don’t delude myself into thinking that I am going to completely change practices of people coming to work sick with these policies, lectures, and emails on the cons of coming to work sick – I do, however, hope that I’m educating a small set of people to be at least a little more sensitive to the role of the individual in maintaining a safe and healthy workplace.  Also, I’m hoping that I can make them a bit more aware of the fallacy of assuming that general underlying good health is the universal standard – i.e. there are people around them who are not generally well and for whom the application of that fallacy can create significant hardship.  And I hope that they take this sensitivity and awareness out into the world where it can be a few drops in a bucket that desperately needs filling.

perfect

Sometimes, a perfect moment comes along.  It’s so nice when it happens.

The past few weeks have been difficult.  I’m feeling pretty bad physically and work is stressful.  My boss seems to be entering into a “last hurrah” stage.  She’s on her way out but is going down kicking and screaming.  The kids are having some tough times – we’re all blaming Northern February plus mid second semester stress.  Midway through the second semester, it becomes clear that whatever your hopes for the school year, you are on a path – largely irrevocably – to them being realized or dashed.  For a lot of students, this is about when they realize that they are not doing well at all and that it is rapidly getting too late to pull it together and save the year. For a lot of kids, this is when it is clear that academic probation, withdrawal, or dismissal is looming and they have only a few weeks to reverse or correct it – if that’s even possible.  We had two students transported for psych evals last week, one I know closely and I grieved for because my time in college (round one) was full of such turmoil and misery.  A close friend of the student’s had had a suicide attempt and it sent the student – who was already having some difficulties – into a tailspin.

Yesterday, another student who I’ve worked closely with came and found me on my lunch break.  I had gone and hidden out in a less frequently used, private room where we have our dictation software set up.  “I’m eating lunch” I told him warily over a mouthful of sesame noodles.  “I just wanted to use the computer, I can wait til you’re done, it’s ok,” he told me.  He stayed and chatted with me, telling me about a class he’d just left where he kicked ass on a presentation.  “We were supposed to present something for 2 to 3 minutes,” he said, adding that most students did song lyrics.  He chose a poem, and proceeded to recite part of it for me, the rest I looked up.  It is perfect for right now.

    Max Ehrmann  

    Desiderata

    Go placidly amid the noise and haste,
    and remember what peace there may be in silence.
    As far as possible without surrender
    be on good terms with all persons.
    Speak your truth quietly and clearly;
    and listen to others,
    even the dull and the ignorant;
    they too have their story.
    Avoid loud and aggressive persons,
    they are vexations to the spirit.
    If you compare yourself with others,
    you may become vain and bitter;
    for always there will be greater and lesser persons than yourself.
    Enjoy your achievements as well as your plans.

    Keep interested in your own career, however humble;
    it is a real possession in the changing fortunes of time.
    Exercise caution in your business affairs;
    for the world is full of trickery.
    But let this not blind you to what virtue there is;
    many persons strive for high ideals;
    and everywhere life is full of heroism.

    Be yourself.
    Especially, do not feign affection.
    Neither be cynical about love;
    for in the face of all aridity and disenchantment
    it is as perennial as the grass.

    Take kindly the counsel of the years,
    gracefully surrendering the things of youth.
    Nurture strength of spirit to shield you in sudden misfortune.
    But do not distress yourself with dark imaginings.
    Many fears are born of fatigue and loneliness.
    Beyond a wholesome discipline,
    be gentle with yourself.

    You are a child of the universe,
    no less than the trees and the stars;
    you have a right to be here.
    And whether or not it is clear to you,
    no doubt the universe is unfolding as it should.

    Therefore be at peace with God,
    whatever you conceive Him to be,
    and whatever your labors and aspirations,
    in the noisy confusion of life keep peace with your soul.

    With all its sham, drudgery, and broken dreams,
    it is still a beautiful world.
    Be cheerful.
    Strive to be happy.

    Max Ehrmann, Desiderata, Copyright 1952.