In the Eye of the Beholder

I came to my art appreciation awakening when I was 13. In the days after my Bat Mitzvah, we had relatives in from another continent, so we all piled into the car for the four-hour trip to Chicago to see Monet in the 90s: The Series Paintings at the Chicago Art Institute. I threw a tantrum. It was my Bat Mitzvah, it should be all about me, and I didn’t want to go to some overcrowded art exhibit.

Once I went in, I was, of course, blown away by the canvasses, one of which was wall-sized. It was also fun to compare what I saw with and without my glasses (this only really works for the Impressionists). Eventually, I came to appreciate more than just impressionism – the pre-Rafaelites, glass blowing, sculpture, photography. Now the walls of my apartment are covered with art, and I even have a miniature of a Rodin sculpture.

In a recent conversation, I realized I may be privileged to have access to a more unusual form of art. My friend was talking about how, after her recent shoulder surgery, she had several x-rays that she would likely never use again. The conversation devolved into a rather silly set of proposals of what to do with them and other leftover medical records. I joked that she should make a collage and hang it on her wall.

We forget sometimes in all of our fear and frustration with bodies that don’t work properly, that the human body really is a work of precision art. Not the outside, the inside, the things we can’t groom or enhance with cosmetics.

Once I had to go in for an ultrasound. (I have cystic breast tissue, which is very common and benign, but they do like to check periodically to make sure everything is ok.)  There was a mix-up and they had to do it a second time. While I waited and chatted with the tech, he offered to show me the heartbeat in my leg (femoral artery) and all of the blood vessels. I’d never thought about a heartbeat in my leg before. It was fun to see, but not really something I could hang up with my posters and paintings.

But there was also the lightning storm. Once, after I had my second set of surgeries for retinopathy, my doctor wanted to check that everything was stable, so he injected me with a dye that lit up the blood vessels in my eyes. While the blood vessels in my legs were cool, these were stunningly beautiful. They looked like a lightning storm against a sepia sky. I could see the smudges of laser scars, which were in high contrast against the sharpness of the blood vessels. It wasn’t what I expected of one of my biggest problem children (my retinas).

I liked it so much, my doctor printed off a copy for me, which I still have a decade later. For a while that page lived on my office wall at work. I couldn’t tell them what it really was; that might have been a little too much for sensitive stomachs (not as bad as that time my middle school history teacher made all of us watch a video of his ACL surgery. Eeew.).

For all the years I’ve been poked and prodded – or I’ve poked and prodded myself – for the sake of good health, I don’t get to see inside very often. Probably a good thing.

So, if you ever have the opportunity, I recommend taking it. As with more common forms of art, a view under the skin may not be to everyone’s taste, but you also may find it as fascinating as I do. It’s all in the eye of the beholder.

It’s All In My Head. Which is Probably Good.

I love movie scores. If you have never just sat and listened to the music behind Gladiator or Last of the Mohicans – whether you like the movie or not – you’re missing out. And we all recognize specific themes from cultural icons like Darth Vader’s in Star Wars. Most of your favorite movie characters have their own music, whether you realize it or not.

These carefully crafted pieces are meant to shepherd us through the movie, so that we experience it the way the director wants us to. Each note is meant to evoke and heighten what we feel – joy, anxiety, certain doom -- often communicating the feeling of the moment better than words.

Sometimes I think my life should have its own score. Each of us has a soundtrack of songs that we love, and that can change every day. But I am talking about pure instrumental, at least for one specific situation that happens three times a year. I am talking about getting my lab results, of course.

I thought I had left report cards behind with school, but every time I see certain providers, my labs (I’m looking at you A1c (diabetes) and eGFR (kidney disease.)) tell a story of how well I have managed my conditions over the last three months. Sort of. I have figured out over the years that the tests are weighted in favor of the last 2-4 weeks, which means I can goof off a bit and still do well if I shape up for finals.

I usually have a good idea of what I am going to hear, but no matter how good my blood sugars have been, I always feel nervous until I hear the numbers. Of course, I don’t have my own personal score, but there are a few pieces I hear in my head every time I go.

In the buildup getting my results, I feel a bit like Flight of the Bumblebee – manic with a hint of both fear and curiosity, with a significant chance of splatting myself on a brick wall (I am a bumblebee, after all). I know how closely I have been following “the rules” and I never know if I am going to “get caught.” As a practiced boundary pusher, you would think I could find some other boundary to push since the consequences of diabetes can be serious (heart disease, stroke, etc.). But the consequences are never immediate and avoiding the consequences for a few more months can be a heady experience.

If it’s good, or at least stable news, I am flooded with relief, and I feel like Beethoven’s 9th Symphony, better known as Ode to Joy. I can continue what I was doing, no changes necessary.

If it’s bad news, I feel like The Imperial March (Darth Vader’s theme), like a failure and certain doom is coming unless I do something to stop it. Then I need all the right radio songs to lighten the mood.

Last week was different. I had been shadowing Darth Vader for several months, and I expected more. But I finally got to hear some Beethoven instead when I discovered that I had regained over half the kidney function I had lost over the last couple of years. Do you have any idea the kind of cognitive dissonance combining those two pieces causes? It was a little disorienting. Hopefully, moving forward, I can ditch Vader completely. It would be really nice not to have that dramatically dark tune bouncing around in my head the next time I get medical results.

A Better Way to Escape

Last week, I watched a PBS special about the 100 books America loves most (you can vote all summer for your favorites!). As I sat there, I tried to remember exactly how long it had been since I read a book. Too long, apparently. I couldn’t recall.

This was alarming to me. Books – actual paper books you hold – are such a fundamental part of my identity that I have put off cataract surgery for over a dozen years because I am afraid to lose the ability to literally bury my nose in a book. As a kid, I would lock myself in the bathroom for hours because no one would interrupt my reading in there. (In hindsight, I realize my parents knew exactly what I was doing and were kind enough to indulge me. Mostly.) I still wear my socks with the flying books on them.

So, I panicked, did a little research, and bought a new book. Then I spent an entire day over Memorial Day weekend – about 13 hours-- reading it. I rediscovered a few things between the pages:

Sleep

My reading day took place on a sofa under a huge window, so in natural light. The TV was off all day except during meals. No radio, either. The phone was in another room. I read and read and read until my eyes wanted to fall out. It was good to know I could still focus like that.

I went to sleep at a reasonable hour, too. 10 or 11, I think. And I slept right through.

That hasn’t happened for months. Even the days I do get to sleep on time, I usually wake up a couple of times before my alarm goes off. Sometimes it takes a while to get back to sleep. Sometimes I wake up with just enough time before the alarm that I know it’s useless to try to fall asleep again. Whatever the circumstances, I am exhausted when I get to work.

Not this time.

Eating

I am an emotional eater. Events of the last couple of years have proven this over and over again, to my detriment. Like so many of us, I eat for comfort. Diabetes is not kind to this habit.

But books are. I can fall into the pages of a book as easily as I can fall into a bag of chips. And I don’t eat when I read. It messes up the book. (I am meticulous about my books. I never break the spine on a paperback and if the corners of pages in a book at the bookstore are folded, I will search through all the copies until I find the one that is least imperfect.) During my reading day, I only ate when hunger drove me to it, and only enough to not be hungry anymore.

It was always that way. Why did I forget that?

Stress

This one is the most important.

My attachment to books started during my recovery from meningitis. While re-learning to walk, the only thing I could do where I looked like all the other kids was reading. From then on, I consumed every book put in front of me, for better or worse (my mom handed me Anna Karenina when I was 9. I hated it, but I read it. Only took three years. Oedipus Rex was much faster. I was 10.) It was a great escape from a very hard life. Problem was, the hard things kept on coming, so I kept on reading. And who was going to tell a kid to stop reading so much?

It lessened a little for grown-up things like college and, well, work, but books still allowed me the space to handle my problems on my own schedule. And that’s what I lost when I stopped reading. TV can be entertaining. Podcasts, too. But you can never lose yourself in digital media like you can in a book. Everything is handed to you. There is no exercise of the consumer’s imagination in digital.

I admit it’s a fine line between allowing yourself to be consumed to the point of not dealing with your issues and using the escape of a book to help. All I know is that my anxiety level dropped by about 25% between the recovery of self and the space given by just one day (a day when nothing else was required of me and I wasn’t putting off other responsibilities). I am really glad to have that back, and I can see that books will remain important to me for reasons beyond the story.

Just like brushing your teeth

One of my friends recently asked me how best to manage a chronic condition.

During the transition between noncompliance and acceptance, I clearly remember that all I wanted was to get to the point where I could relegate my regimen to a tiny corner of my life. I would be “normal” and it would become so easy and routine that the whole thing would take up no more of my attention every day than, say, brushing my teeth. I’m here to tell you it’s possible!

Well, sometimes.

For a little while, anyway. Or even a long while.

The reality is that it is possible, but it’s hard to maintain. You can go for years sticking to the plan you and your providers have devised. For me, that means nutrition plan, exercise plan, logging everything (logging covers different categories for different people -- symptoms, blood sugars, food intake, whatever information you need to understand the patterns of your condition), and several appointments every year. And when I’m on it, I’m really on. I feel strong and powerful, motivated, and present in all aspects of my life.

But then your condition begins to feel neglected, so it starts to have a tantrum to make you pay attention again. After all, no one likes being relegated to a brief bathroom routine twice a day. You get sick, or your biorhythms change (mine tend to do that as soon as I have settled into the right insulin dosage), or some event in your life overwhelms you with stress – difficult project, death in the family, it could be anything, really. That powerful feeling begins to fade, and your energy goes with it. You start to channel the energy you have into surviving that situation, and the easiest place to draw from is the voluntaires – the time you take to exercise or monitor or whatever it is you do to care for your condition. You say to yourself, “I will go back to it as soon as X is over.”

I went through this very recently. In fact, I’m just starting to get my feet under me. For two years, I followed my regimen so closely, I lost 30 pounds and my kidney disease started to actually get better (this never happens). Then I faced a situation where I had to take a project at work that I didn’t want. It was either that or lose my job. And my health insurance.

I told my boss on my first day that the situation was not going to be sustainable due to the location, commute, and an overtly hostile work environment. First, I stopped cooking, which was fine because I could always use frozen meals. Then, I stopped exercising because I was just so tired when I came home, I needed to catch up on sleep. (It’s not healthy to exercise when you’re exhausted, is it?) Finally, after about six weeks, the stress finally started to get to me. My blood sugars started swinging, which made me feel sick. There’s no predictability to how stress will affect blood sugar, so you’re always running to catch up. Functional is about all I could manage at that point. It got so bad that I asked one of my providers to write a letter stating that I absolutely could not work in that environment past a given date.

In real life, there is no way to stop the clock and hit reset. You still have your job, your family, your house, your car, school, whatever myriad responsibilities take up all of your time. Recovery has to be one baby step at a time. It’s taken me three months to get back to about 50% level of effort, as they say in my industry. I go back and forth on the nutrition plan. I cook, but I can’t stay away from sweets. I exercise the way I did at the beginning of my good stretch – cardio only. I have given up logging altogether.

The only element I still follow to the letter is seeing my providers. In fact, I have asked them to shorten the time between visits from four or six months to three. I need the external motivation, and they need to know what is happening. I expect that there will be a considerable delayed impact to my bloodwork. I live in fear of my kidneys regressing. However, I will not borrow trouble.

Instead, I will adjust. I went from little exercise to cardio and weights five times a week (exercise is the magic elixir for blood sugar control). I can do it again. I went from eating out half the time to cooking all but twice a week. I can do that again, too. I may not go back to logging, at least not formally. I hate it too much, so I would rather spend my effort on the first two right now. The other thing I will not do is dwell on the progress I have lost. What’s the point?

No, I will keep dragging my monster up the mountain one baby step at a time. One foot in front of the other until I reach peak performance once again. I will hand it my toothbrush and enjoy the view until I fall again.

Oh, For The Love of Cheesecake

I was about halfway through writing this week’s post and making something for the office bake-off when I realized that it would have been my mother’s 69th birthday today. Not only that, but the thing I was baking was her secret recipe cheesecake, which I hope will win me a glitter-covered wooden spoon tomorrow. (I swear you’ve never tasted anything like it. The cake, not the spoon.)

Instead of finishing the article, I would like to take the time to pay attention to how I feel right now. Mom was a chronic patient herself and an integral part of my development as a self-advocating patient. I miss her every day. Sometimes it’s gentle, happy memories, and sometimes, like today, it’s sharp and sad.

In the past, I would beat sadness into submission. It was a defense mechanism once. I have a lot of those, even though I don’t need most of them anymore. The problem is I don’t know what to do with them now. I don’t enjoy letting my emotions out to play. It doesn’t feel good and I don’t really know how. But delaying the emotional inevitable works about as well as neglecting the upkeep on your car. There’s always a reckoning.

So, please forgive the delay. For the first time in a long time, I want to see what happens if I just sit here and let myself feel.

Reluctant Parent of an Unruly Medical Condition

I went to happy hour last night. That shouldn’t be such a statement, but it became one when I realized I hadn’t gone to a non-work happy hour in forever.

I am lucky to have all kinds of friends – single, married, divorced, with kids and without. On the way home I found myself asking a question I had heard from most, if not all of the parents: where has my social life gone? My job didn’t require overtime, and this blog isn’t overly burdensome. No, it wasn’t those. It was the giant monster-baby in the room – my condition. And that’s exactly what it was. My monster, which had seemed manageable in adulthood, had regressed into a big baby. Before it had been something of a companion, now it was somewhere between an infant and a toddler. I have to feed it. It wakes me up in the middle of the night, interrupts grown-up activities, and acts out when ignored. I don’t even get baby hugs to balance the frustration (Just because I didn’t want kids doesn’t mean I’m not close to several. I know the value of a good baby hug, even if it is a monster-baby.)

Like so many other chronic conditions, this one can just suck your time and energy. Even before I went off the rails of my regimen, I spent hours a day exercising, logging food, and meal planning. I sacrificed an entire half of my weekend every week to make sure I had healthy meals for the week. And if my control didn’t fall into the right range, the first symptom was exhaustion. Who wants to go out when you can barely make it through the work day?

Time and energy aside, I had another issue many parents – and chronic patients – experience. When parents’ focus changes to their kids and when people who weren’t sick before suddenly are, sometimes people disappear. They don’t know how to fit in to their friends’ new reality, whether it is a baby or a condition. They don’t know what to say. I didn’t really notice when I needed all the time I could get to wrestle myself back in the right direction. But as I have gotten better, I have realized that several people I used to see regularly have disappeared -- complete radio silence for six months or more. I can honestly say that’s never happened before.

Turns out I’m the communicator. With a few notable exceptions, I’m the one always reaching out to friends to see how everyone is doing, to initiate plans to hang out, and even verify that they are still free for whatever event it is. As I struggled, I had even less time and energy than usual, and my outreach fell by the medical wayside and I lost touch with many of them. I reached out to the ones I missed and let go of the ones I didn’t.

Perhaps it was a blessing. As with everyone else who consider themselves spoonies, my time and energy are very limited. Maybe I was wasting it on people who weren’t true members of my support network when I needed them. But that left me with just a handful of options to get myself out of my apartment, and social isolation can feed the negative emotions I was pulling myself out of.

For parents of human babies, this kind of gap is often filled by other parents, with whom they now have a lot in common. It’s a little harder to find the other parents of monster-babies. Can’t really tell by who’s pushing a stroller, and I know most of my existing friends don’t have one. I’m working on that, trying to expand into my local patient advocate community. Until then I will stick to the ones who are willing to support me while I try to corral my tantrum-throwing monster-baby and trek back to my life.

When A Word Is More than Just A Word

Language is important. Every issue, situation, and event has language to communicate the story around it. Healthcare as an issue is no different. For example, “chronic illness” is a common hashtag, but you will rarely see the “illness” part used in my posts. That is intentional. I prefer "condition". There are negative connotations like victimization and helplessness that come with "illness". I try not to write to that.

Language may be part of what's wrong with the discussion around health and healthcare. During the last presentation at the Lown Institute Conference this year, Dr. Viktor Montori pointed out that we talk about healthcare as an “industry.” It’s such a cold, harsh word to describe a world whose goal is something as vibrant and vital as life. As Dr. Montori said, if doctors are not treating patients with kindness and care, they are missing the point.

I agree, and I am lucky that all of the doctors I see more than annually do treat me with care and kindness. But I would like to take Dr. Montori's concept a little farther – to the insurance companies, researchers, and yes, the politicians.

Healthcare is unique in the pantheon of political issues. There is no other that poses inevitable mortal risk to so many, which gives it intimacy and urgency. When we were going through the attempted repeal of the ACA last year (twice!), I stayed up to watch the votes because I would not be able to breathe easy until I was sure of the outcome. Even now, I wonder whether those in the administration who continue to chip away at it or those in Congress who won't bring stabilization bills to the floor consider that they are literally sentencing theirs or their boss's constituents to death. People die when they can't get the medical treatments they need.

I know I’m using harsh language, but this is reality and to use more diplomatic language is to lessen that reality. And when people are dying, what right have we to make it easier on those making such impactful decisions?

I think we can change that language. George Orwell said, "But if thought corrupts language, language can also corrupt thought."

He was right. Language is powerful. The words we use reflect how we think. They can reveal whether someone is an optimist or a pessimist, their unconscious biases, and even where they've lived.

If we change the language we use to discuss healthcare, we can change the way we think about it. We can make it so that the people who make the decisions that affect our lives on such a fundamental level start seeing us not just as a policy or the price of a drug, but as us – people just like them, with lives and families, triumphs and setbacks, who feel love and hate and fear and curiosity. They are us but for faulty biology. If they can realize that, we will find their empathy, and empathy is what creates common ground.

It's going to take a while. The Oxford English Dictionary usually waits for 10 years of evidence of usage before it adds a word to the dictionary. But as many of us as there are, and as prominent an issue as healthcare is, I don’t think it will take that long. We should start small, maybe by deleting “industry” from the discussion. If we can stop talking about it in terms of profits and losses, we stop thinking about it in terms of profits and losses. Which might open the door just enough for empathy to fill the gap.

How Many Eggs in Your Basket?

I am one of those people who puts all their eggs in one basket. The more important the issue or opportunity, the more laser focused I become on the one path I want to take. I get all spun up and excited, whether it is likely to work out or not. Sadly, most situations seem to end up the latter. Like the latest one.

For Type 1 diabetics, there are a lot of elements to control. There are also a lot of options to choose from: long-acting and short-acting insulin, separate or mixed; blood sugar monitoring devices, either by finger (or other body part) prick or continuous glucose monitor (CGM); and insulin delivery systems, vial and syringe, pump, or even an inhaler.

I have never been one to pursue the latest gadget as soon as it comes out. I don't like to be the guinea pig, and if others are willing to weather the glitches before I have to, more power to them. It took a long time for my doctor to convince me to get a pump, but that was the only major change I made from the basics chosen for me at diagnosis. I tried a few CGMs, but they never worked, and I was happy with the regular finger prick method. Until recently, that is.

My recent detour from my regimen has resulted in progressively worse control, and I was starting to feel desperate, mostly because I no longer understood how my body worked. None of the biorhythms I had learned over the decades applied anymore. When one of my providers suggested a six-month-old technology that would intuitively keep my blood sugars in a good range, I dumped about two dozen eggs into that basket. It would be easier and quicker than any other option.

Once I made the decision to go forward with the combination pump and CGM, I wanted it now, which turned me into a bit of a Ms. Hyde. I am not entirely proud of how I handled some of the communications involved, but everyone came through for me (shout-out to Blue Cross Blue Shield CareFirst Administrators, who approved my new device in less than 24 hours even though I had six months on my old pump warranty. Never thought I would say that.).

I spent a few hours getting trained on my new device, setting it up and navigating it, putting all the pieces together and putting them in the right places on my body. And then, and then . . .

Not once did it occur to me that it wouldn't work.

Even though not one of the previous attempts to use a CGM had worked, I just couldn't accept that it wasn't working. I tried for over a month, tweaking the tech, moving the glucose sensor, but the CGM just wouldn't read accurately, and even when it did, the pump couldn't keep up with its readings, so my blood sugars remained high.

Well, what now?

Cheat, that's what, at least as much as I needed to. If that word is uncomfortable, think of it more as making my own rules, something at which I excel.

I moved the glucose sensor to an area on my body not approved by the FDA and turned off the artificial intelligence (AI) part of the tech, which was supposed automatically adjust my base rate insulin. Suddenly the readings, while still high, were looking a lot more accurate, so I let it run another week to make sure it wasn't just one accurate sensor. (It wasn't. ) Well, that was exciting. But when I tried to turn on the AI again, the whole thing malfunctioned, including the sensor. Not so exciting.

I theorized that the problem was either that the AI was based on information I had entered that no longer applied or that the pump itself was broken, but no one at the manufacturer knew enough to help me figure it out. My only option was to go back to basics, basics I hadn't needed to employ since my first pump in 2001. I started running fasting tests to figure out what my true insulin dosage should be.

And that's where I am now. If I got it right, I will try talking again with the manufacturer to see if they can answer my questions about why the AI doesn’t work when all the other parts do. I still hope I will get to use the AI eventually. It sure would make life easier. But for now, I will keep the two halves of my new device separate: one half proven tech upgrades (the CGM) and one half methods that have been around since the first injections (manual insulin calculation).

So please, try not to do what I did and assume that every new device will be the only solution to problems that have been effectively addressed for decades. Keep an open mind and see more than the easiest path. I wouldn't want anyone else to end up with the disappointment of a basket of broken eggs.

Some Nights

"Some Nights" by Fun. (2012) 🎶

Not to be morbid so soon after my post about fear, but for a long time, I was fairly sure I would die before I turned 60. This was one of the cornerstones of the overly strong mental defenses I developed in my teens and made insurmountable in my 20s. What was I supposed to think with all the diseases I had, including kidneys that only operated at about 50% at the age of 29? And if that were true why bother? With anything?

I unconsciously built my life around that concept. I didn't allow myself to commit to much, not people or activities or work. I never thought about buying a house. I didn't care much that work was a job and not a career. For the life of me, I could not visualize where I would be in five years. I used to tell people it was because every time I tried, everything would change. But it was really because in five years, I could be dead, so why bother to plan?

Then something strange happened. The chronic kidney disease – the one most likely to kill me – started to get better. When I was first diagnosed, I was led to believe that I was most likely on a slow decline toward dialysis and then a transplant if I could get one, depending on how stable I could keep myself. Ten years later, was that not still true?

Generally, it was, although studies were starting to show that if a patient could stabilize their kidney function, they could go on at that level forever. However, there was no evidence that people who reached stage 3 kidney disease ever recovered function.

None of us really knew what was going on. We speculate that I am hypersensitive to dehydration, which makes kidney disease worse, and as I began to exercise regularly, I also began to hydrate better, and my kidneys reacted well. Then again, it could just be that my body doesn't react as everyone else's does. The peripheral neuropathy of my early twenties is all but gone and I was that 0.03% of patients that reacted to amitriptyline with grand mal seizures. Whatever the reason, as my kidney function improved, my worldview began to change.

Maybe I wouldn’t die early. Maybe I would have time to leave some kind of legacy. Maybe I would have time let more people in. Or let any people in. On purpose, that is.

So what now? What do I stand for?

As they say in the title song, most nights I don’t know. It’s no coincidence that I started this blog shortly after I started getting better. Or that I switched employers for a more equal salary and better treatment.

The beauty of it is, I don’t have to know. Not really. Not yet.

It seems I might have time.

Let's Talk About Fear

I’m going to die. Eventually. It terrifies me.

I pulled my monster out from under the bed yesterday. There was a lot of kicking and screaming involved. This was the raw, emotional side of myself I have been avoiding for over 20 years.

See, I am an almost entirely cerebral creature. I think it was both inherited and by choice, but I have beaten my emotional self back so far and so often that it hurts to even consider what I feel. When my therapist asks me how I feel about something, I automatically start talking about what I think. I don’t know what I feel.

It was a defense mechanism at first. I needed it. Boy, did I need it. When I was young, I felt that if I let myself feel anything, I would collapse, consumed by having to deal with my life. When I got older, it was so big I didn’t – don’t – know how to let it go.

Those of you who read this blog know that I realized my mortality early. I was not quite six when I was the only one in my city to survive spinal meningitis. That was hard, and it made me angry. I wanted to fight. Which was good, because I needed to fight in order to recover.

Then I started losing people. My grandmother to lung cancer when I was 10, a family friend and surrogate grandfather the same year. He had a heart attack. At the hospital they told us he would get better, but he had a second heart attack and died. Then it was a peer, a friend, Paul, who died over Christmas break when a drunk driver jumped a highway median. He was 12.

I got angrier and angrier with each one. It wasn’t fair. It felt like I was always waiting for the next shoe to drop. And shoe after shoe after shoe did drop. I was in a constant state of braced for the worst. But I wasn’t afraid. Not yet.

It took diabetes to make me afraid, or rather, a gaggle of well-intentioned providers – doctors, nurses, nutritionists – to teach me that. To be fair, that was the prevailing wisdom in 1991. They would harass, harangue, and threaten. “You will die of a stroke before you’re 19 if you don’t follow the rules.” I am sure I am one of thousands who has had to unlearn how I was socialized to my own disease.

I did try to follow their rules. It didn’t work out so well. And instead of helping me find the right path, they kept trying to force me down a path I didn’t want to follow. My fear compounded when I was finally scared straight by the development of serious complications. Compounded, but never addressed.

By then, I had college to keep me occupied, at least for a couple of years. But before I could even finish that, my mother was diagnosed with pancreas cancer – a death sentence. I was sad and scared and desperate to hang on for as long as I could to the one who kept pulling me out of these things I got myself into.

That was the big one. My fear grew until all my other emotions had to hide behind it. I didn’t cry at my mother’s funeral. I would set my chin and clench my teeth and if I had to cry, I would wait until 2 in the morning, when I was sure no one could hear me, even when I was by myself in my apartment. I clamped down so hard on my subconscious that I actually didn’t dream for over 15 years. And no, it wasn’t just that I didn’t remember. I didn’t dream. I got REM sleep, but I did not allow my subconscious to participate.

I couldn’t afford to let any emotion touch me. If the floodgates opened, I would lose my self. (Not myself, but my self.) I still feel that way.

Ironically, the solution is to step away from my self, and to observe it for as long as I can, to recognize and understand whatever bubbles up. My therapist told me that in psychology, there is the rational mind (me) and the emotional mind (not me) and the best place to be is in the space where they overlap, the wise mind.

I've been running away from this for a long time. I'm not sure I even want to be in the wise mind. Rationality is easy, comfortable. It takes no energy, no change. But just because you decide you don't want to feel doesn't mean that you don't. I think that if I keep on as I have been, I will explode, which means my emotions will come out either way. I can either do it with some thought and control or wait until I have none. I'd rather it not come to the latter. So, I'll try. I make no guarantees, but I will try.