A New Faith in Persistence

I’ve not been too sure about where to start the past few months.  It has been some serious “in-between” time for me.  I have detected nothing of import or interest materializing before me; my dreams seem to list on the edge of fantasy while I go through the motions of living in a place that doesn’t, superficially, hold too much of relevance.

I have plenty to talk about, for sure.  I’ve been angry at our health care system.  I worked for a month to get a special prescription for specific glucose test strips pre-approved so that my reading would radio transmit to my insulin pump to make data recording more seamless.  I got the strips – in a quantity that I will exhaust in 10 days and cost me double what I would have paid without insurance buying them from Amazon.  Seems the doctor didn’t communicate what a “90 day supply” meant.  Maybe I need to write a treatise on Type 1 Diabetes for health professionals.

I worked to get a second opinion for my medical condition, had my husband take a day off of work, etc., only to be told that my initial treatment is the best there is.  I’d like the women out there to think about this: if you are growing facial and stomach hair suddenly, and you want to get pregnant but can’t take the treatment while trying to get pregnant or while pregnant, is this the best that can be done?

I’m furious that our local rivers are so polluted I have to breathe through my sleeve while crossing a two-mile stretch of I-95, while the EPA makes no moves to enforce dumping restrictions or clean-up on the offending company producing the effluent.  I’m pissed that Trump talks about forcing the Mexican government to build a wall along our southern border and that European nations are turning their backs on refugees.  I’m pissed about the possibility that Trump could be our next president.  Every time someone gives me a reason it can’t happen (he’s only got 33%, not enough for a majority!), I feel my cringe face go into effect because they’re jinxing the outcome toward the reality mogul.

NOTE: I can’t complain about the basics.  On Maslow’s hierarchy, I’ve got most of the bottom covered.  I even work my way up to the second or third level of the pyramid on my good days.  This weekend I get to dance zouk ALL WEEKEND.  Bliss.

So why am I not making more progress – with words, with dance, with my health?  Life, it would seem, has given me plenty to say and do about plenty of things.  Yet my reactions are aimless anger and inaction.   And so I have been left wondering, what is wrong?  What holds me back?

In this quiet period in my head, I’ve taken a lot of time to try new things and read material I otherwise might skip.   Even more specifically, I joined a Bible study group (which I give mixed reviews), I’ve begun volunteering for a local organization serving the homeless, I’ve been studying up on how to approach the publishing industry, and I’ve started teaching a Spanish class for my church.  I found some new doctors, I started dancing West Coast Swing.  My husband and I even entered Financial Peace University, a course devoted to money management according to Christian principles.  Maybe you’ve heard of Dave Ramsey.  Maybe not.  It’s like being 16 all over again.

I think  I’m finding the answer, in the most unexpected of places for me, a spiritual agnostic of utmost vaguery.  Our pastor has been holding a sermon series about prayer the past month, which uncharacteristically engaged me in the act, for at least five minutes a day.  Then for Bible study, we are reading Adam Hamilton’s “The Call” about the life of Paul the apostle.  A year ago, and perhaps even six months ago, I’m not sure you could have interested me in the topic.  Study of the Bible was, in my opinion, a sure sign that you were headed toward close-mindedness, judginess, and conceit.

Strange indeed it is for me to now concede that through the lessons of prayer, of being called, of Christian money management, and of the apostle Paul, I believe that insofar as my problems can be attributed to me, they are caused by a crisis of faith.  Hear me out: my crisis of faith is no secret to my husband, who married me knowing well that I had no desire to be roped into the groupthink of Christianity or any other religion.  It is no secret to my closest friends who know that my agnosticism is convenient because it can’t collide with my political principles as I’ve set them up in my head.

But I am beginning to admit that I might have been wrong in rejecting God on a level beyond the Jung-ian, “a priori” soup of souls.  I am beginning to see that my crisis of faith is not so much about  exactly what I believe as it is about my lack of persistence in life.  This part is what would likely shock most people who know me well, even my mother.  Most people would describe me as hardworking, disciplined, diligent, reliable, if even a bit intransigent.  So where have I lacked persistence?

According to God as revealed to the Apostle Paul and just about everyone I’m studying in the Bible, from Abraham to Jesus, I’ve lacked this key quality in everything I’ve ever undertaken.  When I was young, I’d pray to God for him to take away my diabetes.  He didn’t.  Eventually, I gave up praying.  Surely, if He didn’t do it, it wasn’t that I was asking for the wrong thing, it’s that He was not terribly powerful.  When I was a pre-teen and teenager, I rode horses competitively, on a big circuit.  I did okay.  But then I had an argument with my coach, and I convinced myself that I wasn’t really in love with horses anyways.  And perhaps I wasn’t.  In short, at 16, I sold my horse and gave it up.  I wasn’t the top rider, and I sure didn’t want to work as hard as the top riders did or invest as much to become the top one.

In college, I auditioned for two a capella choral groups and was rejected from both.  Rather than try to start my own, or improve my singing, I found a different venue where I could sing in a less solo fashion.  I only got the gig after proving that I could blend my voice in with the group’s.  Some might say I didn’t give up here, that I simply found a way to continue singing in a place that was more suited to me.  But it didn’t feed my soul the way soloing would have, so if I’m honest, I gave up.  After college, I didn’t apply to UN internships or do anything that would have allowed me to get close to the stages where simultaneous language interpretation actually took place.  What a dream!  Instead, I taught high school, because I could get a job.  In my defense, a job with health coverage was pretty important, because I’m diabetic, but jeesh, I hate how that’s always my defense.

After college, I held three jobs at three places in four years.  There were always “good” reasons for the change.  However, it’s hard to become an expert at anything you only do for a year.  I took up ice skating for pleasure and found I was good at the basics.   I even became part of a synchronized skating team.  But it got tough around the the flip and the sit spin.  Rather than skate three times a week, I pulled back.  Then I went to grad school for public health, which made ice skating really tough to schedule, and I didn’t like my new ice coach anyway.  (Anyone seeing a pattern here yet?)

In case anyone is wondering, yes, I worked in public health for almost six years post-grad, but again, spread across three different companies.  I never got promoted.  Why did I leave?  I’m not right for corporate America.  That is most certainly true.  Why am I not working for a non-profit?  No good reason, other than I started to realize that working for working’s sake was just that, and my soul was empty.

Luckily, by this time, my husband was in the picture, and encouraged me to pursue writing.  I wrote creatively in high school and college, but I never would have thought of making a living at such a frivolous activity.  (Read Max Weber’s “The Protestant Ethic and the Spirit of Capitalism” and you’ll understand that I was raised to believe such words, even though I am not much of a capitalist most days, and the only part of the protestant ethic that remains in me is “ethic.”  “Protestant” was dropped from my self-descriptions a long time ago.  Maybe I’ll have to reinstate it.)

So I wrote a book.  Literally.  I sat down last April 1st, and started my novel.  I’ve now completed it twice or thrice over.  I’m now learning that the art to writing a novel isn’t in the writing of it, it’s in the persistence of re-writing it ten times without desisting or fainting from your own boredom of trying to imagine the characters doing anything different or any thing differently.  In my writing life and in my honest prayer life, I’m learning that I give up as a default, instead of fighting for what I really want and believe in.

Perhaps the only exception to this rule is marriage.  I dated for fourteen years before I met my husband.  In all that time, I didn’t give up believing that the right person for me was out there, waiting to be discovered.  I may have stopped dating for months at a time, but I always returned to the arena, waiting to run from another lion.  In short, it paid off.  Once I found the best person for me, I took the “love is a decision” motto to heart, and I’m happy I decided to commit to it every day.

My husband has been the most positive and rewarding part of my life.  He has changed me.  I have allowed him to change me.  He’s brought in his faith, his patience, his doggedness, his steady hand, and with little more than his extraordinary example, he’s changed me.  He has never rubbed my past failures in my face, perhaps because he doesn’t think of them as failures, like I do.  He just moves forward.  It has been a good time to adopt his example.

I asked him last night if he thinks I’ve changed at all by opening up and going to church with him, taking the lessons to heart, and starting to pray on my own.  His answer?

“You’re more deliberate and thoughtful.”

These words that others have used to describe me all of my life but never rang true took on a new meaning.  If he’s right, they will lead to persistence.  And if all of the publishing agents are right; if the Apostle Paul is right; if God is right, persistence will change the world.




Anatomy of a Brain Re-Born

I have a new obsession.  Thank you, Robert Whitaker, for making me paranoid and sending me back into a new depressive cycle.  Just kidding.  I thank you, for being confident and brave enough to go against an accepted society standard (notice I didn’t say “go against science”) and encourage people to reconsider our societal paradigm of mental health treatment.

For those who don’t know your book, Anatomy of an Epidemic, it chronicles the history of mental health treatment and outcomes in the United States for over 60 years.  The evidence presented demonstrates that the pharmaceutical revolution used for psychiatry since the 1950s has consistently contributed to poor outcomes, or, in extreme cases, complete disability for those suffering from bouts of mental disorders.  The research presented showcases more traditional treatments including group therapy and therapeutic homes that demonstrate that even those with serious mental breakdowns or schizophrenic episodes have recovered throughout history. The most damning link (and most reminiscent of Freakanomics) chronicles the re-birth of psychiatry using the medical model in the 1980s.  This period is highlighted by and permeated with the funding and partnership with pharmaceutical companies who seek to exploit consumerism in the treatment of mental health.

Thank you, Mr. Whitaker, for reminding me that capitalism and continuous growth are not healthy bedfellows for the human body or mind.  Thank you for reminding me that someone else’s corruption should not end with my addiction and spiral into true insanity.

Call me a conspiracy theorist, but throughout the weeks I’ve read your book, I now wonder if the psychiatry profession and pharmaceutical companies aren’t in love with mass murder in this country.  In case you haven’t noticed, effects of these shootings include 1) criticizing the gun lobby like its the only agent with a stake in the game (although it certainly deserves its share of criticism) 2) hearing many well-intentioned people, including AP columnists, talk about the need to get people with mental health disorders “on medications.”  Somewhere in the mid-west, a chic hotel is booked full of pharma lobbyists drunkenly cackling with their sweet success.

Hell, even Paul Ryan, in response to the mass shootings in San Bernadino, has proposed legislation that would force compliance with medications and other physician-prescribed treatments.  Is he in bed with big pharma or just brainwashed like the rest of us?  The only thing that possibly terrifies me more than Trump handing out identification cards to Muslims is the thought that someone like – well, me – could be forced to comply with a regimen that has proven harmful to generations of people.  I’ve wondered plenty of times if I’m crazy, and have sought treatment in the past, but now I’m scared to do so again, for fear that I wouldn’t have any choice or right of refusal.  I’ve been prescribed drugs before for anxiety, but now that I’m starting to question this, I’m finding that I’m a bit of a maverick.  What might start as a desire to quell anxiety and self-actualize could end up with me drugged and a shrunken hollow shell of myself.  (Don’t blame me for the melodrama, it’s a sign – or is it a symptom? – of high anxiety.  And by the way, my questioning of my own use of pharmaceuticals should not be interpreted to mean that I judge anyone else for his or her decision with regard to the same.  But seriously, read the book first.)

Thank you, Mr. Whitaker, for reminding me that I have a choice.

My husband is deployed now, and will be gone for half of the next twelve months, too.  Should I tell people how hard it is for me to handle the household alone?  Tell them how lonely I get after 8 pm?  Should I tell my doctor how, when I hear my husband’s voice and see his face – the time I should be the happiest during his time away – I break down and cry?  Should I tell people that I’ve yelled at my husband just to take out my anger at the Army, at my food processor, at the crappy internet service at his international post, or at my current medical problems (which, by the way, are still regular and occupy 90% of my thoughts while awake?)?  Do these problems warrant medication?  Or do we need a different national response to national “security” so that our soldiers aren’t deployed year after year after year, contributing to the military divorce rate?  After all, what is divorce but a trip both people take to a land of high anxiety and stress that the pharmaceutical companies may well love to profit from? Perhaps we need more thought around the role of our military in general, medical research around mental health (and the biological causes of mental illness, since those remain elusive), research around whether or not returning soldiers treated for PTSD and anxiety do better with or without medications, research around whether or not pharmaceutical medications cause homicidal tendencies,  and while I’m at it, research of how religious radicalization occurs, and, dare I say it, any research around what causes gun violence in general?

Thank you, Mr. Whitaker, for putting me and my most precious relationship back into the realm of “normal” and reminding me that I am / we are more than whatever DSM category the psychiatrists are inventing these days.

Since reading Anatomy of an Epidemic, my mantra has become, “I am not a person with anxiety” or “I am more than anxious” or “my feelings are normal.”  I put these phrases on repeat as I walk through my neighborhood.  I don’t dare tell anyone what I’m thinking. I’ve already heard three other ladies this week tell me they “take a little something” to help them, which is their prerogative, but doesn’t make me feel any better about my newfound decision to go against the grain.  As any personal with sad or anxious thoughts can tell you that it only makes matters worse to have people react to your problems with the paternalistic reaction that maybe you only think the way you do since your brain is a little off.

Thank you, Robert, for listening to me.  For believing me.


Don’t Take My Halloween Candy, or 8 Ways to Avoid Annoying A Type 1 Diabetic

One thing I’m super open about is my diabetes.  I have been type 1 diabetic for over 23 years, and with all of the ways it has affected my life, it does me no good to hide it.  Moreover, I feel a responsibility to educate people about what my life is really like, should they feel inclined to ask or, if they’re less fortunate, make comments out of ignorance.

Over the years, what has struck me over and over is how little people actually learned in high school biology.   Heck, I’ve even caught people with college degrees (and even some–ahem!–nurses) asking questions that tend to defy logic and modern biology.  We need to start with a quick note on the biology of diabetes.

There are two major “types” of diabetes (with other minor types, like “gestational diabetes”) that everyone needs to be aware of.  Type 1 diabetes (commonly called “juvenile-onset” or “insulin-dependent”) can occur in people of all ages, but true to stereotype, usually occurs in people still in their developmental years.  I was diagnosed at the junction of ages 10 and 11.  However, I know people who were diagnosed in their 20s, 40s, 50s, as well as kids who were only a year old upon diagnosis.  It is a true autoimmune disease, with no single known cause (although many theories abound), and a certain genetic component.  What truly distinguishes Type 1 diabetics is that their bodies “attack” their own pancreatic beta insulin-producing cells and shut down production.  Untreated, this allows glucose to build up in the body and overload the bloodstream.  This overload of glucose strains almost all major body organs, and leads to a toxic state called “ketoacidosis” in which the body begins to burn proteins and fats since the cells can’t get ahold of the glucose floating in the bloodstream.  Rapid weight loss, extreme thirst, mood changes, fatigue, and frequent urination are all common symptoms.  If left undetected and untreated, type 1 will lead to death (the amount of time before death is debatable–ketoacidosis sets in within about 4 hours in a diabetic who does not receive insulin, and estimates of time to death are only a few days to weeks, but for people who are not yet diagnosed, and their bodies may produce their last spattering bursts of insulin, a person may live a few months to a year untreated–this is likely highly variable and something physicians could comment on).  Treatment always requires injected insulin.  Period.

Type 2 diabetes, aka “adult-onset diabetes” or “non-insulin-dependent” or “lifestyle” diabetes, on the other hand, is not a disease in which the body attacks its own cells and shuts down production in a short time period.  Rather, the body is producing insulin but either cannot keep up with the body’s demand for more, or the body isn’t able to effectively use the insulin it is producing.  This type of diabetes can occur in people of all ages, and indeed, with our current culture of obesity, is becoming almost common in children.  This type of diabetes is considered to be “caused” be a sedentary lifestyle and is often accompanied by a poor diet.  Meaning?  You often see this type of diabetes occurring in people who are overweight and inactive.  However, there is also a genetic component, shown most strongly in studies showing higher rates of the disease within certain races or ethnicities.  Untreated, type 2 diabetes also is characterized by a build-up of glucose in the bloodstream, although it is not usually quite as drastic as in type 1, and ketoacidosis is a less likely outcome.  Symptoms include thirst, fatigue, and frequent urination.  Unlike type 1, individuals often live for years without knowing they have diabetes and are more likely to die from a complication caused by having elevated glucose levels long-term (heart attacks, stroke, ulcers from poor circulation, kidney damage, etc.).  This disease, while serious, remains less catastrophic than type 1 because the body still does produce at least some insulin, which keeps the body from having grave ramifications on an immediate basis.  Treatments can range from “simply” losing weight and keeping a strict diet, to taking oral medications, to taking medications plus insulin, to the newest “cure” of gastric bypass which is a bit beyond my comprehension (see footnote 1).  Treatment is often progressive as the disease deteriorates over time.

With that biology background, I respond to my top pet peeves that yes, can tick me off in a heartbeat, but more importantly, I hope these responses can help others make sense of the condition and have more productive conversations about the ways diabetes affects a person’s life and the burden of the disease.  Read on before you ask the next diabetic your burning questions.

  1. Diabetes is not necessarily caused by eating sugar!
    • “Did you get diabetes because you ate too much sugar?” Referring to the above explanation, Type 1 diabetes is caused by the body attack its own insulin-producing cells.  Type 2 diabetes is caused by LONG-TERM inactivity levels and/or overtaxing the body’s resources with poor diet in general (i.e., high fat, high sugar, high processed foods, low vegetables, etc, etc) COMBINED with genetic predisposition (everyone knows that lucky shit that eats whatever the hell he or she wants and abuses the body royally and never has a care in the world).  Every person on the planet eats “sugar.”  A fancy word for sugar is “carbohydrate.”  Once ingested, all carbohydrates eventually break down to glucose, the molecule the body uses for energy.  (Remember high school biology?!)   Ergo, you can’t survive without carbohydrates because your body needs glucose in order to function.  Rice, pasta, bread, milk, fruit, legumes, and tons of other foodstuffs all contain carbohydrates.  Every balanced and healthy diet contains some carbohydrates.  But even so, there are people that will eat Twinkies, Twizzlers, and Oreos every darn day and never develop diabetes.  So guess what? No diabetic wants to hear that you assume it’s his or her “fault” that they’re sick because they ate sugar.  Classic case of blaming the victim, although I understand most of it is done innocently.
    • Good questions to ask a diabetic here to spark conversation and learn more would be, “Does anyone know what causes diabetes?” or “Did a doctor ever give an explanation for what caused your diabetes?”
  2. Food raises your blood sugar, insulin lowers it.
    • ”So if your blood sugar is low, you need insulin?”  Again, people, back to HIGH SCHOOL biology.  Let’s revisit what insulin does–its one function, its reason for existing.  Insulin is a hormone that binds to your cell wall and allows molecules of glucose (broken down from the food you eat into glucose in the stomach) to pass through it from the bloodstream into the cell.  Once in the cell, the mitochondria go to work on the molecule of glucose, converting it into energy you can use.  If insulin doesn’t exist, your glucose cannot get into the cells for use and backs up in the bloodstream. Conversely, if your bloodstream doesn’t have a certain amount of glucose and you have too much insulin relative to the amount of glucose present in the bloodstream, you also have a problem with homeostasis.  In other words, your bloodstream needs a certain amount of glucose at all times (technically, this equates to roughly 70-100 mg/dL), and the insulin in your body needs to balance the glucose available to take only a certain amount and give it over to your cells. In a type 1 diabetic, this process is completely broken.  Not only do we need external insulin to survive, but we have to constantly maintain our own homeostasis through constant fingerpricks to assess bloodstream glucose levels.  So, if my blood glucose is LOW (meaning less than 70 mg/dL), I do NOT need insulin (that could kill me!), I need FOOD.  Think through the biology.  Revisit this concept until you have it.  See footnote 2 for a solid, easy-to-understand video.  Don’t remain ignorant of this concept!  If you ever come across a diabetic suffering from low blood glucose who is unresponsive or seizing, and you give him or her insulin, you may mean well, but that could be life-ending for that person.  While high blood glucose will kill you in the long-term (over months, years, or decades), blood glucose that is dangerously low can kill you in minutes.  Ironically, a diabetic who is being treated with insulin or other drugs can just as easily die from LOW blood sugar as high.  So, after you’ve got the idea that low blood sugar requires food, not insulin, then think through the opposite: if blood glucose is too high, insulin (or oral meds for type 2) is needed, not food.  This is the “typical” problem with diabetes and in that, without insulin or meds, blood glucose would always be too high.
    • A good question to ask a person with diabetes would be, “What are the symptoms of low and high blood sugar and how could I help you in each scenario?”
  3. Diabetics need to eat a varied diet, including “sugar.”
    • ”So you can’t eat sugar, right?”  WRONG!  Good Lord, please please please pay attention in biology class.  Please refer to the passage above about how almost all foods (except raw animal meat with no sauces) contain carbohydrates that break down to glucose.  If what you mean is I’m not supposed to eat cakes and candies, that is closer to the truth, but guess what?!  NEITHER ARE YOU, SO GET OFF YOUR HIGH HORSE.  Processed sugar is good for no one, but something most everyone eats at some point.  I, for one, eat processed sugar (chocolate chip cookies, mostly), on special occasions and I give myself more insulin to compensate for the influx of more sugar (remember the concept of homeostasis).  I also NEED sugar, and the faster acting the better, when my blood glucose is low.  Fruit juice, soda, hard candies, sugar packets, or quick dissolving candies are all good options to raise blood glucose back up to a normal level quickly. I don’t mind correcting people who think this, but it sure does shock me how little pay attention to something as important as everyday nutrition and biology of digestion.
    • If you’re not sure what a person with diabetes can eat (and recognize that the answer may change at any given moment), just ASK THEM, don’t assume.  “Would you like a piece of cake today?”  “Would you prefer fruit for dessert?”  Better: “Would you prefer if WE ate fruit for dessert together so we could both be healthier?” Novel concept.
  4. Some people have diabetes “really bad.”
    • “Oh you have diabetes?  My grandma has that, but not really bad–my best friend’s little sister’s friend has it really bad.  I think he needs like, shots and stuff.”  Sigh.  Either you have diabetes or you don’t.  Many people say this without having any idea what they even mean by it.  To me, I might interpret that they mean to say the person has type 1 instead of type 2 and has to take insulin, but to someone else, it just may mean that the type 2 diabetes has progressed to the point where insulin injections are needed.  To a physician, it may simply mean that the person doesn’t check his or her blood glucose and doesn’t take insulin or meds as directed and therefore is not compliant with medical best practice and is risking any number of possible bad outcomes like blindness, nerve damage in the hands, feet, eyes, or kidneys, ulcers that won’t heal, cardiac problems, etc. My great-grandfather had type 2 diabetes before they really knew what it was and how to treat it.  In his last years, his glucose was so elevated that when he used the restroom, he couldn’t see the toilet well enough to aim into it properly, and his urine found on the floor was the consistency of jelly.  THAT, is undoubtedly, “really bad” diabetes, but it was only bad because he either did not know how to care for himself, or disregarded sound medical advice about how to do so.  So in order to have diabetes “less bad”, you need to take care of yourself.  Now, please note that EVERY diabetic has good days and bad days, even if he or she takes impeccable care of him/herself.  There are so many degrees of health, and heck, some of it is just luck, or “factor X” as one doctor of mine called it.
    • To have a good conversation, you need to ask a person, “how are you feeling today?” just like you might a person without diabetes.  Another good question is, “What kinds of things help you control your blood sugar? / What sends your blood sugar out of whack?”  Not “how’s your diabetes going?” because gosh I can’t tell you how to answer that question honestly in a succinct sentence.  So you’re going to get a very dumb or a very abbreviated answer.
  5. You can still be healthy with diabetes and live well.
    • “You look too healthy to have diabetes.”  Gee, thanks.  And just what should I look like?  Should I bleed from my right ear and drool?  Should I drag my left foot for greater effect?  Should I be hooked up to dialysis?  Jeepers.  I don’t know about you, but to me, living well is just as important as living.  It was made clear to me very early on that diabetes was my number one job.  My most important responsibility was to take care of my body.  Having a high fiber, low-fat, low-ish carbohydrate diet (preferably organic, preferably full of fish, blah blah blah); exercising daily; educating myself on how to control my disease; getting my flu shots; doing multiple blood tests and insulin injections as needed; learning to interpret my body’s signs and symptoms—all of these things were my job, my life.  If I neglected these things, I might live, but I would suffer possible complications at a young age.  These complications could compromise my vision, my ability to have children, my energy, my kidney function, my moods, and my ability to function on my own.  Um, no.  If my choices are living well, living like crap and hating life, or dying, I’m going to choose the first one.  I imagine most rational people would.  Again, in order to “look healthy”, you need to BE HEALTHY.  Even if you’re not diabetic.  Duh.
    • Good questions to ask, “What kinds of things do you do to maintain your health while living with diabetes?”
  6. Getting diabetes as an adult is not worse than getting it as a kid.
    • ”It stinks to get a disease in middle age–better to never know any differently,” or “You turn 40 (or 50, or 60) and your body goes to pot–if you’re a kid you learn to deal with it like second-nature,” or “I wasn’t supposed to get diabetes at this age.”  I can’t tell you the number of times I’ve heard these or similar sentiments.  What I can’t quite figure out is why.  The closest I can surmise is that people assume it’s difficult to be diagnosed with something as an older person because it requires the person to do that dreadful thing–CHANGE.  However, if you stop to think about this for two seconds, you realize how offensive this is to pretty much everyone.  First of all, MOST people getting diagnosed with diabetes in middle age are getting diagnosed with type 2, which, annoying as that is, is far less dangerous and deadly than type 1.  In addition, as I said, I know people who were a year old when diagnosed with diabetes.  At that point, the parent must inject an infant with insulin and check blood sugar via fingerstick multiple times a day, then sometimes force feed the kid a certain amount after administering the drug or if blood glucose is low.  Imagine!  The poor kid can’t communicate, the kid feels pain, the kid feels tortured, but can’t understand that the parents are working in his best interest.  Or think of the teenager–just at the time his or her peers are growing into independence and learning to drive and hang out at pizza joints, a teenager with diabetes is ostracized from certain food-centered social activities (tough to take part in birthday cupcakes, pizza after school, learning to drive if blood glucose isn’t stabilized, sports activities without multiple blood tests) all while having the usual strain of being a teenager.  Then, to top it all off, by the time they reach middle age (if they do), they’ve got a body that has been battered by decades of a disease, versus the person newly diagnosed in middle age whose body has served him or her well for decades.  Note to people in middle age who are diagnosed with either type 1 or 2 diabetes: it’s not your body’s fault that you never properly appreciated its ability to function normally for most of your life.  Maybe now you’ll think about it.  Finally, CHANGE is something required of ANYONE facing a new disease diagnosis.  I don’t care if it means changing the way you eat, cook, walk, run, the medicine you have to remember, or what.  ANY chronic disease requires long-term change, and it is no harder for an adult to change than a child.  (This reminds me of a side argument about how people claim it’s harder to learn language as an adult than as a child.  Um, I could go on for ages about how that is pure bollocks, but: another day, another post.) The adult was simply spoiled for longer than the child.  So sympathy for people who are newly diagnosed in middle age with a chronic disease, while correct and good, should not push aside the sympathy you should feel for people who have lived with the same disease since childhood.  I can tell you now that diabetes will NEVER feel “easy” or “second-nature” or “like something I don’t know how to live without.”  Given the option, I’d drop this deadweight sucker today and not look back.  So if you do not have a chronic illness, take a moment and thank a higher power for your luck and your parents for amazing genetics.
    • Good questions to ask diabetics of all ages might be, “How does diabetes change your daily life?”, “What kinds of things have you had to change since being diagnosed with diabetes?”, and “What is the hardest thing about having diabetes?”
  7. You could do it too.
    • Some phrases I heard growing up were “I could never give myself a shot” (from friends); “If I could just take it away from you and have it myself I would” (from my grandmother); “I admire you, I could never be so vigilant” (from random people on the bus).  Bullshit.  I did not choose this disease, I would not choose this disease, and giving myself a shot is not, from my view, a choice.  Unless you feel suicidal.  If your choice is death, there’s more wrong than just diabetes.  To my grandmother, thanks for your sentiment, I appreciate the source, but jeesh, you wouldn’t know what to do with diabetes if it smacked you across the face.  So again, be grateful and move on.
    • If you feel the need to make a comment, simply say, “What a difficult disease to face.  I admire your courage.”
  8. Diabetes is not “better” or “worse” than other diseases.
    • “At least you don’t have cancer.”  Ah, the cancer card.  Really sucks the response right out of me.  Except that it leaves me raging inside.  Don’t get me wrong.  Cancer is awful, especially tragic in kids and people who have lived healthy lives to the best of their ability.  But there’s a couple of pain points I have with comparing my diabetes to cancer.  First of all, all diseases suck.  God didn’t mean to make some bad things more bad than others.  It’s all bad.  But comments comparing me to people with cancer do cause me to think about things like: You can prevent cancer by not smoking.  You can eat well.  You can (within reason) avoid many carcinogens like not breathing in Clorox.  Beyond this, there’s the fact that sometimes, cancer is curable.  And that makes it a game you can (hopefully, eventually) stop playing.  You don’t get off the diabetes train five years from now, there is no remission.  Not if you’re type 1 and usually not if you’re type 2.  Oftentimes, I find my brain thinking, cancer is diagnosed in the aged.  Sometimes cancer is the first disease seen by people well after middle age.  This does not make it any “better” or “easier”, it just is a reminder to APPRECIATE your body for every day of health you have if you’ve made it that long without problems.  Finally, if cancer is terminal, the romantic in me says it is a chance to say goodbye (this is terrible, I know—don’t hate, I’m being honest about what I really think about as a reaction to insult).  This is tragic, but also an opportunity to write your own destiny of who you want to talk to before you go and what you want to say.  You may even decide to completely change your life at its end to meet your dreams—living by the beach.  When you have diabetes, you’d better be at work tomorrow, and if you’re not, don’t you dare tell anyone that you somehow lost control of your blood glucose for twenty-four hours—“you’re too smart for that.”   I don’t want to think like this; it is just a guttural response when I feel insulted, like my disease is less consequential than Sally’s.  Every disease is a burden and has a burden.  Don’t pit them against each other.  There is enough empathy in the world to go around.
    • If you feel that a diabetic is being melodramatic, first of all, shame on you.  Second of all, keep your comments to yourself.  If your empathy is just so low that you feel you have to sling a slight toward the offending diabetic, please seek therapy for whatever complex you’re suffering from.

If you’ve gotten this far, congratulations!  You’ll now be ready to handle your first full-fledged conversation with Caroline-the-diabetic.  In addition, I think these tips could apply to anyone looking to understand more about any illness.  In case you’re curious, in the time it took me to write this post, my blood sugar was high 14 times and low twice.  Now enjoy your Halloween candy!


  1. http://www.smartbrief.com/s/2015/10/diabetes-remission-after-gastric-bypass-surgery-tied-beta-cell-function
  2. http://www.mayoclinic.org/diseases-conditions/diabetes/multimedia/blood-sugar/vid-20084642

Amen to what’s not there and *&$@!* DIY projects

So in my never-ending battle to 1) figure out what’s wrong with me and 2) fix it, I heard today that I don’t have rheumatoid arthritis.  Amen!  However, I was told that I have the gorgeous hands of a hand model and that they are dainty enough to not take kindly to being “mistreated” by learning aerial silks (does that mean I can also tell people I’m no longer allowed to do dishes?).

So the bad news: I’m not sure I can make a career of being an aerial artist.  The good news: I can save myself a lot of time and money in the trying.  Also, I don’t have the autoimmune disease I had feared when my hands started clenching and I was unable to open or close my fingers upon waking each morning.  Note that the elimination of RA as a possibility doesn’t rule out other autoimmune diseases (yay!).

I was given permission to continue with household DIY projects as long as they were not as stressful on my hand joints as rock climbing.  While this sounds like a far-fetched comparison, I refer you to my previous post about the importance of towel bars (multiple) in each bathroom.  Ergo, it is safe to assume that I have been in the process of adding towel bars to my two bathrooms, or,  more accurately, I’ve been trying to do so.  After my last post I’ll admit to feeling euphoric at the idea of bettering a room for me and all who may come after me as well as putting my own personal pet peeve to rest.

Then, of course, reality set in as I tried installing an actual towel bar and hit the metal plates.  I’ve already mentioned this before, and even had the audacity to proclaim that I would stop making mistakes until I figured out what I was doing.  So I did what any rational being in 2015 would do and watched no fewer than 4 YouTube videos of how to install a towel bar (or TV, for that matter) into both drywall AND metal.  I purchased the right bar off of Amazon that was only 18 inches in length and got back to work.

I drilled my second set of holes and immediately hit the same problem as before–despite not drilling over a stud, I was hitting metal and inch behind the wall.  The more I tried to push through and force the plastic anchors to lie flush when they had nowhere to expand to, the more I ripped up my wall (not to mention stressing my precious hands, ha!).  One guy at ACE asked if I had water gushing from my wall because he thought it sounded like I had hit a pipe.  *Paranoia set in about there, despite no water coming from the wall.*

So, I’ve given up a second time, after losing some sleep to this issue.  (I did note that I realize this “issue” is about as unimportant as they come, right?  And yet you see that it is still something about which I lose precious hours of sleep.)  The rheumatologist said he thought my not sleeping was a bigger deal than the pain in my hands since the pain has finally subsided after I stepped away from aerials for a few months.  You know you’re transparently Type A when the rheumatologist talks to you for twenty minutes about getting better sleep.

So coming full circle to my list of what is wrong with me and what needs to be fixed–I’d like to say it’s the towel bar’s fault that I’m a bit neurotic.  And why not?  Last time I blamed the beguiling Moen towel bar with a string of curses, it didn’t argue.

Is it just me? Ode to towel bars

Every home I’ve ever lived in has touted its greatness in some respect.  Some apartments have come with nice pools, others have included utilities, some places come with extra storage or a gas stove.  In the competition to fill new homes or have the perfect living space, it seems people will go to great lengths to distinguish their space with unique properties.  So it seems odd to me that all of them have missed the marked in at least one respect: they never have enough towel bars, and the ones they do have are often flimsy.

I’ve interrupted my regularly scheduled “heavy chat” as I’m not yet ready to face my newest set of issues.  But I am ready to talk about towel bars.  Levity has its place.  For once, I’m very grateful to have a problem in my life that could not be less important.  I’m thrilled to have this nit-picky, ridiculous, first-world bone to pick with society at large to forget about other things.  It makes me think differently about how others’ shallow obsessions may actually be facades for things they can’t let people see.

I digress…towel bars.

So I don’t know about you, but I like to use one towel to dry myself after a shower (I don’t discriminate between ‘this one for body, this one for hair’) and I keep the same towel in use for about five days.  Ok, seven, max.  I use a dehumidifier to dry out the bathroom so things evaporate more quickly, but nonetheless, a quality towel bar where one can spread this towel to avoid mold growth is essential to making that towel last and not over-using resources, like water for laundry.  Also, if I’ve been working out a lot, I like to hang up my workout clothes before tossing them in the hamper to prevent mildew and mold growth.  Seems like common sense.  So I need a towel bar (and not one that falls off of its brackets every time I retrieve the towel or replace it) for the towel, and another bar, or at least some hooks, for the clothes.

Anyone with me on this?!

So I have followed that basic principle for years.  Then, last year, I got married.  Obviously, now I have a husband who shares my bathroom.  And while the poor state of towel racks has always been a pet peeve of mine, getting married has magnified it tenfold.  My husband, logically, also uses a towel (I hate sharing a towel with someone–how can you dry yourself with someone’s damp leftovers?).  Therefore, there should be two towel bars, his and hers.

And YET.

In every residence we’ve had (which is more than you might think, since he’s military), and in every residence I’ve been invited into and asked to use the restroom to scope out this issue, there is a shocking dearth of towel bars.  There is only ever ONE.  And it is usually 18 inches, made of a cheap, lightweight metal, with shabby brackets so that the towel is in constant peril of plunging to the floor and remaining crumpled and risking mold.  In fact, we were recently shown pictures of a “big kid” home, as we call them, of a local millionaire.  The bathroom was done in marble and gold, with a shower the size of my queen bed and a steam room off to the side.  A huge jet tub was next to the shower.  A stunning job if ever I saw one.  The bathroom had been photographed from every angle.  A wealthy man lived there with his wife and children (and who knows, maybe a mistress or two).  And how many towel bars could I find in all of the pictures?  That’s right, ONE.  Horrific.  Apparently it’s fashionable for the wealthy to throw towels on the floor for someone else to pick up and use after each wash.  Even if I had the money to act like that, I wouldn’t.  Nothing should go into the hamper wet.  It comes out smelling like wet dog.

So, in our current home, I couldn’t stand it any longer.  I undertook the impossible: installing (many) more towel bars; at least three per bathroom.

I began, of course, in the wrong place.  I went shopping at Home Depot for the bars. What I should have done, as any good consumer knows, is look on Amazon for a surefire match to the current hardware and a better deal.  Hindsight is…

My second mistake was measuring from an aesthetic perspective vs. a structural one.  What is the top reason most towel bars fail at crucial moments of need?  They are not properly installed with adequate screws into studs or drywall that is thick enough to hold considerable weight.  So keep in mind that if you decide to add a towel bar, you have to think more about what is behind the wall than what you want it to look like installed.  For example, I am installing one where two walls meet at an unusual obtuse angle.  I wanted the bar to extend the length of the wall and drilled holes to meet the 24 inch criteria.  However, drilling so close to the edge of the wall left me drilling into a metal plate only half an inch behind the drywall.  Not enough space for a 1 and 1/4 inch screw.  And you don’t want to move to a shorter screw.  Trust me.

My third mistake was taking down a towel bar in the guest bath to reinstall in the master.  Unlike most towel bars, the one in the guest bath was really well installed.  Why did I do this?  Well, looking back at my first mistake, it was because I had gone to Home Depot instead of shopping online and getting the exact hardware I should have used.  So in trying to cover that problem I made another, because anyone with any life experience knows that once you remove a perfectly good towel bar from its original location, that location can never be used to the same effect again.  If you do make the mistake of trying to reuse the holes, I can promise you’ll have weeks of misery while your bar collapses multiple times after you leave the bathroom and you return to a crumpled, nasty towel on the floor.  Eventually you’ll capitulate and overpay some goon to come in and reinstall the bar in a new place, which will only work marginally better than the original location, unless you get lucky and the guy uses the right screws.

So, I’ve stopped the mistakes before I can make any more. I’ll watch some YouTube videos, ask some people who know a thing or two some questions.  And then I’ll get back to it, because life with two plus towel bars in the bathroom is just infinitely better.  Until that moment of nirvana comes, I’m back to one towel bar.  I love him so much, I’m letting my husband use it.

And the next step is…

So I decided that the next step was a biopsy.  Rather, my new doctor strongly recommended this and I was so tired of trying to come up with an answer myself that I was easily swayed into this next step.  So now I’m recovering.  As I said in the hospital when loopy with anesthesia, “you know that you’ve hit rock bottom when you’re ok with having holes punched in your vagina.”

Part of me is scandalized by my own willingness to admit this publicly, but a greater part of me realizes how damaging it was for me to grow up in a society that hid these things, that pretended these issues didn’t exist.  I wish that these were issues that women warned you about, as common as complications from childbirth, for example.  I wish this were polite dinner conversation.  I wish I didn’t feel ashamed of how I’m laid up for days because I can’t sit down (church was out this morning, as is going anywhere in a car, really).

I digress.  While I’ve been lying here the past couple of days, I came across this article:

https://static.medium.com/embed.js<a class=”m-story” data-collapsed=”true” href=”https://medium.com/the-real-edition/kingpins-1fa9331c705d”>Kingpins</a&gt;

This was a great article pointing to problems I think our society misses all too often.  While we’re caught up in the sensationalism of war or homicide or celebrity happenings, we are completely unaware of societal problems and solutions to chronic pain.  Meanwhile, people like me struggle with chronic pain, while trying to avoid the predators trying to hook us on a problem worse than the solution.  Hard to be vigilant when you’re drugged up.  Here’s to hoping there’s always someone else looking out for you.

An Intro to My “Credentials”

In starting to write a book this year, I’ve gotten a lot of questions about who I am and what I’m about.  I hadn’t thought of a novelist having a “platform” or “brand” before; I just thought I liked to make stuff up.  But as I wonder what to put out into the world and why–which will be the words I will rely on that I can never take back–I have had to do a lot of questioning of what I should talk about.  There are a lot of topics that matter to me (#blacklivesmatter #linguistics #homicide violence #publictransportation #zoukdance #travel to name a few) but few of which I am really qualified to speak.  In posing a lot of life’s questions to myself, I still come up with the rather pathetic answer of “I don’t know.”

So in searching my history and my soul, I’ve wondered what parts of it will be relevant for the long haul, and which are easily forgotten.  In that sense, I suppose I will only have time moving forward to tell me.  Nonetheless, as I look back on patterns in my life, the one that strikes me today is how, at a relatively young age, I know a lot about chronic medical conditions.  I use those words and they sound almost cold, but if I put it in more personal terms, I could say I know a lot about feeling sick, feeling at odds with the world, pain that lasts and lasts, tears that arise because there is no other way to cope.

I’ve been to a lot of doctors in my life and I’ve worked around them too.  The funny thing is, the ones I’ve worked with don’t suspect me of being the one that is also currently someone else’s patient. “You’re so young–what would you know about bad knees?” or “You’re young and healthy, long-term care isn’t something you have to worry about yet,” or, my favorite, “You look great–just wait a few more years, then you’ll know what your body really thinks of you.”  It’s such a strange stereotype that we have in society–that people who are young are assumed to possess vitality and full working parts, like a new machine.

Meanwhile, the doctors I see as a patient are often baffled with what to do with me.   One chronic illness is plenty per appointment, as I’m told, yet what if I have four or five to throw at them?  I often leave appointments feeling sorry for ruining their days with paperwork.  My bathroom drawer looks like a pharmacy and I feel like a pincushion.  I try to keep in mind that nothing imminently fatal has been thrown my way–that’s the beauty for now.  But where I belong in the abyss between thriving and  dying often remains precarious, in my mind.  And never mind if I’m somewhere solidly in between.  My position in less important than how I move from one end to the other.  Will a bridge appear in the direction I’ve hoped for?  Or will the next tidal wave wash me to the dreaded shore?  Or am I doomed to remain in purgatory for the next fifty years?

It’s not good to complain in public; no one likes a whiner.  There is seemingly nothing to complain about when you look at the world and you see all of the terrifying “could be’s” surrounding you, forcing you to count the blessings your twisted brain is all too eager to forget.  So feeling grateful is an important part of staying healthy.  But if you were to know the truth, my mind spends a good portion of each day wondering just how much energy one can expend to maintain a state of health that feels only marginally better than those who often are seen as unlucky.  It’s hard to talk about what the problems are–they’re embarrassing and complicated and often misunderstood.  But I wonder if, as I write, this crucial part of who I am will find the will to shine in characters that are more courageous than me.  My hope is, they take life’s knocks and bounce back with a return kick to the gut, a killer smile, and great hair.  My hope is that my “credentials” in life inspire characters that inspire me to climb the right side of the chasm.