words mean things

This is not a revelation I came to late in life.. When your mother buys you clothes from the Husky boys section of JCPenney, you figure things out pretty quickly.

Being fat was not the only thing I had to contend with growing up. I had greasy wavy hair, terrible skin, and giant 80s thick-lensed Harry Caray glasses. I wore an endless parade of sweater vests and rugby shirts. I was criminally uncoordinated, hated sports, and prayed that the softball flying through the air in gym class was not headed my way. I was a nerd and a reflexive rule follower. So yeah, my unpopularity was a kaleidoscope.

But the fat was always there, literally. Always in the background of everything. So many people talk about struggling with their weight their entire lives, gaining and losing in a vicious cycle. I didn’t do that. I just never lost weight, ever, and it crept up and up continuously.

There were times, very occasionally, when I would get a wild hair and start trying to exercise. I went all-in on the Nordic Track once for what, four months? It never stuck. And I never really lost weight from those forays either.

I never dieted. I was never “watching what I ate.” Thus, the aforementioned creeping up on the scale – if I ever got on one, which I didn’t. To be clear, I was never an overeater. I didn’t binge, ever. Thank god. Still, food was a comfort. It was pleasurable, when very few things fulfilled that role for me. But while I would buy the package of Oreos if I felt like buying Oreos, I didn’t sit down and eat them all in one sitting, or even half a dozen. My love for Oreos and its expression, I felt, was in the normal range for a human.

I didn’t eat healthy, but it wasn’t all candy and junk food either. I enjoyed cooking, although cooking for one can be pretty dispiriting at times, too. Still, I loved – and still love – cookbooks and food magazines, as much for the writing and the imagining about the food they contained as for instructions on what to actually prepare for dinner.

Clothes in general and shopping for clothes in specific were a menace. Even just stepping into a Kohl’s for khakis or a polo shirt would make me sweat and get anxious. So I would buy basics in XXL or whatever and wear them until they literally wore out.

I remember talking with a co-worker once about finances and saving money. And I said something to the effect of, “I don’t buy a lot of expensive things.”

“Well you certainly don’t spend much money on clothes,” she replied.

Yeah, thanks.

Everyone who knows me even a little bit knows that I absolutely loathed having my picture taken. Because when I would allow myself to look in the mirror, usually on most days I would think, OK, you’re fat but it’s not tragic. You look OK. But show me a photo of myself, and it became clear that this horrible rock monster should not have been released to mingle among decent people. My brother once got me a brown puffy winter coat as a gift, and I had to return it because of my unfortunate resemblance to a walking mudslide when I wore it.

Then a few years ago, I went to the doctor to discuss what to do about my deviated septum or whatever was going on in my nose to cause me to snore so much. They took my blood pressure, and they basically freaked out. They said it was so high that normally they would make me go to the emergency room. But I felt completely fine.

That was the start of my evolution into becoming a constant patient. I went on a bunch of blood pressure meds. My blood sugar was also high, and I went on meds for that.

I did take steps. I cut out all sugary foods – cereal, cookies, desserts. I tried to move more and be more conscious about what I ate. This didn’t really cause me to lose any weight. But my blood sugar was improving. And the blood pressure meds did get things settled down in that area, too.

Then in late January last year, well, I had a brain tumor. Which is a whole other story. But the intersection came when I accidentally saw myself in the mirror by the hospital bed, in an extra-flattering side profile while wearing a hospital gown.

And I thought, you really are a fat bastard. A switch flipped at that moment, and I realized that if I was ever going to get my health under control, if I was ever going to not take seven strong meds every day for the rest of my life, pretty much the only thing to do to fix it would be to lose a massive amount of weight.

Something I had never done, ever.

The universe continued to conspire, as while I was in the hospital, I got bloodwork results from the previous week. I thought I was doing so well limiting sugar. I thought getting the results would be a little bit of good news while I sat in the hospital hooked up to enough machines to rival Col. Steve Austin after his accident.

It was not good news. My blood sugar was higher than ever. Another blow.

So the switch was flipped. And in eight months, I had lost a third of my body weight. Yes, I changed how I ate and how I exercised. But those details pale in comparison to the fact that my brain had changed – and not because I no longer had a tumor. It was almost like I had a new consciousness.

There’s a concept I’ve learned about recently called “post traumatic growth.” I’ve learned about it because it gives a name to what I’ve gone through the last year. I could have died, or gone blind. But I didn’t. That can cause a lot of switch flipping.

So, the good stuff: I actually enjoy shopping for clothes now. Which is lucky, since I gave away 80-90 percent of my clothes because they were too big on me, another new experience. I still don’t like having my picture taken. But mirrors now fascinate me. My neck, well, exists, and my profile is weirdly narrow. My knees knock.

I enjoy people noticing that I’ve lost weight. That’s fun. My niece recently said that I looked “svelte.” But I also know that ‘there be dragons.’ My grandmother instilled a lot of disordered thinking on my mother and her other children about food and body image, and caused a lot of pain that way. I don’t want my self image to be twisted up with how much I do or don’t weigh.

Obviously, though, the biggest benefit has been for my general health. My meds are cut back to almost nothing now, and my blood pressure and blood sugar are both normal. These are somewhat hidden benefits, because honestly I don’t feel any different. But I know how important they are to my general longevity and health. Which is a topic of some interest to me as I fully transition into becoming Grandpa Simpson.

The bad stuff: my relationship to food has completely changed, and not for the better. I don’t really get pleasure from eating anymore. Now it’s just a calculation, a process to be completed. I used to do a “cheat day” once a month, but I stopped doing that when I realized that the pleasure I was getting for “cheating” was so transitory.

In the before times, I never really even thought about food that much. If I wanted to have something to eat, within reason, I had it. (It wasn’t until I was in college that I understood what the saying “have your cake and eat it too” meant. Because to me, if you were eating your cake, you were having it.)

Now I think about food all the time. When to eat. What to eat. But just in the “ticking boxes” sense, like how you plan to do the laundry or take out the trash.

At least right now, I’m also extremely sensitive in terms of food and weight. If I start straying from the path I’ve set, I start gaining again. And I’m afraid to even flirt with going back to where I was. Petrified.

It doesn’t help that my elliptical machine has been broken for two weeks, and I’m shocked with how much I’m looking forward to getting back on it every day.

So it’s a mixed bag, like everything. But the best part of all of this has been the sense that I made a decision about a major life change and stuck with it. I followed through and did it. That hasn’t always been my strong suit, to put it mildly. But in the past year, I have done this in multiple dimensions. Let’s hear it for post traumatic growth!

I’ll never be a thin person. No matter what I weigh, I will always be a fat person who lost weight. That’s OK. I can live with that.

Onward and upward.

I woke up that Saturday morning in late January with a strange shadow on the right side of my vision.

It was a grayish cast at the far right edge of the image in my right eye. Sort of like how the details fade out at the edge of an old photo.

Over that weekend, the gray advanced toward the center of my field of vision, a little at a time. By Monday things had transformed from a minor annoyance, like when you get some dust in your eye, to something that definitely was not going away – and in fact, it was steadily getting worse. I called the ophthalmology clinic for advice. They asked me a lot of questions that I later realized were designed to diagnose a detached retina, which is the most common reason for this kind of vision loss. But not mine. I answered ‘no’ to all the questions. At the same time, it was difficult to describe what my vision looked like, so a diagnosis was not in the offing.

That’s when the triage nurse uttered the now infamous line, “It’s not an emergency.” She made an appointment for me that Friday, four days hence, at the optometrist to have my eye checked out. The clear implication was that there was something physically awry with my right eye, and they could diagnose it if they examined it.

In hindsight (ha!) I should have said, right then, “I have to disagree. This is definitely an emergency. I have had a significant vision change in just a couple of days. I need to see a doctor immediately.”

But I didn’t do that.

It was probably a combination of trust and denial. I just hunkered down and got through the week, as my vision on the right continued to deteriorate. I drove and worked on the computer and did pretty much everything I would have done normally. I’m extremely left-eye dominant, so it didn’t affect me as much as it might have other people.

It was distracting, though, so my friend Lisa suggested that I buy an eye patch for my right eye so I could stop thinking about it every minute of every day until I saw the optometrist. I bought an eye patch at Walgreens, but the problem was that it was cone-shaped, which meant that when I was wearing it, it pushed my glasses out of alignment – so I couldn’t see well out of the left eye, either. I took it off.

My vision on the right went from a gray shadow into swirly kaleidoscope images across my entire right eye by the time Friday rolled around. I was concerned, but still no one had given me any indication that this was the emergency that it turned out to be. So I was remarkably calm.

The optometrist did a long series of tests on my right eye, focusing on the external condition of my eye. But my vision on the right was so limited that I couldn’t even complete many of the tests, which involved focusing on light points or targets in vision testing machines. I couldn’t point that eye toward anything because I could barely see out of it.

After a battery of tests, the optometrist said he couldn’t find anything wrong with my right eye, and I should return that Monday for a visual field test. Why can’t I just do that test now, I said. Well, he said, we dilated your pupils, so we can’t do that test now.

Great.

My vision in my right eye continued to get worse. That Saturday night, there was a snowstorm. That Sunday morning, I woke up and I was completely blind in my right eye. Not dark black, but completely gray. Blind.

I called the “Ask a Nurse” line and told them what was going on. Get to the emergency room now, they said.

Which of course meant I had to dig my car out of the snow in front of my building, and then drive myself to the nearest ER. Which I did.

As I was walking alone into Meriter ER, I finally started to freak out. After just a few days, I’m blind in one eye, and no one seems to know how or why this happened, or what to do about it. Maybe this means I’m going completely blind, for seemingly no reason! I was near tears when I checked myself in to the basically deserted emergency room on that snowy Sunday morning.

The staff was very kind and thorough with me, so I calmed down some. They then proceeded to do all the same tests that had been done at the optometrist, and some new ones. They squirted gel around my eye to do some sort of special imaging test. All showed nothing wrong with my external eye – retina was fine, no trauma to the eye, etc.

So they said, we want you to go to the after-hours clinic at UW Ophthalmology. And take a cab. I was still OK with driving myself; I drove over there myself, after all. But it was still snowing and my visual field was severely compromised. So I agreed.

I got to UW Hospital sometime before noon on Sunday. The front desk directed me where to go for the after-hours clinic. UW Hospital is like an enormous, brightly-lit rabbit warren. I managed to navigate to a seemingly deserted section of hallway with a little empty waiting room. I waited for a while, thought I was in the wrong place, went all the way back down to the front desk again to be told that yes, I was in the right place, I just had to wait longer.

A very nice and calm doctor eventually came to fetch me. He did a couple of the same tests over again, but just a couple, before he said, finally, “You need to get an MRI right away.”

Thank god for him.

So I went back down to the UW emergency room to wait for the MRI. That happened about 1 p.m. It was long and loud but I’m not claustrophobic, so it was OK.

Then it was back to an ER room with the glass doors to wait for the results. Around 5 p.m., an attending physician finally came to give me the news.

The MRI showed that I had a tumor on my pituitary gland, which is at the base of the brain right where the optic nerves meet. The tumor had grown large enough that it was pressing on my right optic nerve, causing the vision loss.

So what’s the next step, I asked.

“Brain surgery. You’ll be having brain surgery,” she said brightly, as if I had just asked what the special was in the cafeteria that night. “Tomorrow.”

When I thought about it later, I realized, how exactly was she supposed to act? Like it was some tragedy and I should be scared? In a weird way, her breezy attitude probably helped me not freak out, because I was so taken aback.

I checked in to a hospital room, then it was just waiting for the next day when I would have the…well, the brain surgery! I was antsy and anxious, but 24 hours is probably a very fast turnaround for major surgery like that.

The staff explained that because of the size of the tumor, they could go in through my nose and extract the tumor that way, rather than actually opening up my skull. Very Egyptian, I thought.

It was 5 p.m. that Monday when they wheeled me into the operating room. Just before that, the surgeon came to talk to me. He was very calm and helpful and explained that not only was UW-Madison a major center for this kind of surgery, but he himself had done several hundred of these procedures. I’m sure I asked him a bunch of questions, which he patiently answered, but I don’t really remember any of that.

What I do remember is thinking, OK, the bar here is simply waking up again. I want to come out of this surgery alive. Everything else, I would figure out as I went along. First, I just had to wake up again.

The surgery took five hours. I woke up about 10 p.m.

So, first hurdle cleared.

The report after surgery was a good one. They felt they got the entire tumor, although it’s apparently difficult to discern the line between the tumor and the pituitary itself. It can grow back, but it’s extremely slow growing. So I will be having occasional MRIs (fun!) in the future, to keep an eye (ha!) on things.

The worst part about waking up was that soon after, I had to have another MRI to check the results of the surgery. I was still extremely nauseated from the anesthetic, and the MRI took more than an hour. Being immobilized in a cold metal tube while feeling like you’re going to throw up for the entire time is not fun. I knew I wasn’t going to actually throw up, because I hadn’t had anything to eat for many hours. Still, it was a terrible feeling. They gave me a bulb to hold in my hand that I could squeeze if anything felt really wrong and I needed help.

I just kept saying to myself, for that seemingly endless hour: don’t squeeze the bulb. Don’t squeeze the bulb. Everything is fine. It’s fine! DON’T SQUEEZE THE BULB.

I spent that first night in the recovery room. I’m sure I slept at some point, but I don’t remember anything exactly. I know it was extremely difficult to breathe because of all the stuff packed in my nose.

Eventually it was back to a regular hospital room. I was antsy again, this time much worse, because I was uncomfortable and bored and I was hooked up to tons of monitoring equipment. Everyone was so attentive and positive and helpful. Still, like Dorothy, I just wanted to go home.

The next day, Tuesday, I thought I was going to get some good news. I was supposed to be going to my GP doctor that week to get the results of my AIC blood sugar test I had taken the previous week, while my vision was going haywire. I thought that I had been doing so well in terms of my blood sugar; I gave up everything sugar-forward quite a long time before that – cereal, cookies, ice cream, all that stuff. So as I sat up in my hospital bed feeling like Steve Austin after his accident, I called the clinic to get the results. At least this will be a small bit of positive news in the midst of all this craziness, I thought.

Man plans, God laughs, as they say. My blood sugar was actually way higher than it had been the last time. Damn.

Right after that phone call, I caught a glimpse of myself in the full-length mirror in the room. A hospital gown is already not an optimal garment to reinforce self esteem. Even so, I thought to myself, goddamn I’m fat.

This was not exactly a novel realization in my life. But I had spent years avoiding mirrors and photos and just generally trying to not think about it. Now, I couldn’t stop thinking about it.

So in the middle of all this insanity of having a brain tumor and brain surgery, something clicked. The only way I was going to get off all the blood pressure and blood sugar meds I was taking, and stop being a patient for the rest of my life, was to lose a bunch of weight. And to commit to doing that in a way that I had never committed to anything, ever.

Which I did.

That’s another story, for another time. But I think it’s important to demonstrate how all this uncertainty and change rained down on me all at once like lava from Mount Vesuvius. As someone who hates change and who has run from it all my life, this was wildly scary. But it existed, and I wasn’t going to let it break me. I was going to move through it and get to the other side, no matter what.

Fear is the mind killer.

Back at the hospital, the physical therapist took me on a little jaunt to see if I would be OK getting around by myself at home once I was discharged. I walked up and down the fake stairs and around the traffic cones set up in the PT room. I balanced and walked steadily. I did really well; better than they expected, I think.

So by Wednesday night, I was taking an Uber back to my house.

My lifelong friend Paul, bless him, had retrieved my car I left at the emergency room while I was in the hospital, in the process having to have it towed to the dealership first because the battery died in the cold. He’s a prince. Not that I was going to be driving anytime soon – not because of my vision, but because I didn’t feel up to walking, much less driving anywhere.

I should also mention that I have a great group of friends and wonderful family who provided a lot of support throughout this process. I wasn’t really alone. But I was physically alone. So the Uber driver dropped off my weird shaky one-eyed self back at my condo, and there I was.

Once I was back in my familiar surroundings, able to sleep in my own bed and watch my own TV, the weirdness of the situation really began to sink in. Being back home actually made it more weird. When I was in the hospital, it was understandable that things were bizarre. Now, with my own books and clothes and refrigerator and view of the lake outside, I really started to think, “I just had brain surgery. This is insane. What now?”

But I was also preoccupied with being the world’s best patient. When I was in the hospital I committed to the idea that while many things could potentially go wrong, nothing bad was going to be the result of me not following the doctors’ orders.

This included odd things like not being able to drink through a straw, because even that could increase pressure in my head too much at this delicate time. It also involved draining my nose with a neti pot twice a day for several weeks. I ordered from Amazon one of those grabber sticks you get for your grandma so she can pick things up off the floor without stooping – something else I wasn’t supposed to do. (I loved that thing.)

So I slept and ate and moved around gingerly for a few weeks, and gradually the weirdness just became my life.

My vision improved quite a bit in the first few weeks after surgery. First I started seeing edges of objects in the gray field, then full shapes, then colors started filling in. I could navigate around on foot with just my right eye, if necessary. But the detail, in terms of things like reading or using the computer, didn’t return. And it still hasn’t, seven months later.

The best way I can describe my vision on the right today is, have you ever seen those grainy images taken with digital cameras with the light sensitivity cranked up super high? Where all the details are lost in a pattern of multicolored pixels? It’s something like that.

The ophthalmologist says that my vision could continue to improve for up to a year after surgery. But things have remained pretty static for months now. I don’t expect much to change.

That said, I often reflect on how lucky I was. The tumor affected only my non-dominant eye. Although I waited too long, at least I dragged myself to the emergency room, rather than waiting for more eye appointments that wouldn’t have helped diagnose what was actually wrong, while the tumor grew more. The surgery was a success, and my recovery was mercifully free of drama and complications.

Not to mention, I also have a great story to tell if the conversation ever lags. “This reminds me of the time I had BRAIN SURGERY!” 🙂

Most importantly, this experience taught me a lot about what’s important, and what is not.

I’m alive. I can see. That’s what is important. The rest, well, time will tell.

Lately I’ve been missing my parents a lot. They were always a support system for me in difficult times, much more than I realized when they were around.

And I was thinking about them today, in the car driving to McDonald’s for a Quarter Pounder meal with a Diet Coke. And I thought, “I am so grateful for my parents teaching me not to be an asshole.”

The assholes are ascendant in this country right now – in a big way. I guess it’s understandable that if your bad behavior is not only not condemned but celebrated, it must feel like a huge relief to give in to that. But I have never felt the pressure of the assholes as keenly as I do right now. They are everywhere, and they are shouting in my ears.

I don’t know exactly how people get that way. Lots of psychologists and sociologists have complex theories about this. But to me, thinking about myself, my brothers, and the people I grew up with, the enormous influence of our parents looms large in this regard.

My parents were many things. But they were both unfailingly kind, thoughtful, and respectful of everyone around them. I wouldn’t say they demanded the same of their children, because it wasn’t a demand. It was just the air we breathed.

If you made a mess, you cleaned it up. If you made a mistake, you apologized and tried to make it right. You told the truth. You were respectful of all people around you, no matter who they were. Everyone is connected.

It was so far from a Mike-Brady-style “Here’s the lesson, kids” thing. They just lived it. And I thank god we had that, every single day.

In a weird way, of course, this makes the current perfect storm of assholes more difficult to deal with, because it’s so outside my experience. I have trouble wrapping my head around why anyone would scream racial slurs out a car window at strangers, or spit on a Wal-Mart greeter, or bring an assault weapon to a state capitol because you wanted a haircut.

On some level, I know where it comes from. Blaming others, not taking responsibility for your own life, projecting anger outward – these are easier paths. But this outlook is also utterly foreign to me. These people, my fellow countrymen, seem like aliens. It also feels like an exhausting way to live your life.

And I think about Bob and Barbara Blust. And I wish that I could hug them tightly and tell them, “Thank you for making me not an asshole.”