Visible Handicap – Life of Riley

Whittling Away at the Hollow

Yesterday, we went to the baseball game.
If you saw pictures of the day on social media, it looked pretty great!
The sun was shining, the game was exciting – all the things you hope for at the end of June in Baltimore. Especially when you’re a passionate Orioles fan like me.

Unfortunately – the experience was more like a game of “find the hidden differences” between the photos and actual reality.
Kind of like ALL life on social media if I’m being entirely truthful.
Most people aim to present the most attractive, fun-loving, exciting, and happy versions of ourselves online, because somewhere it is writ that so long as we give the appearance of our best selves, that’s who we are. No one wants to see a picture of your hurt feelings or your wounded pride. I’m sure there’s a scientific explanation behind it—but hell if I know what it is.

Anyway.

Cutting to the chase, I didn’t fit in the seat.
I don’t know if you understand how hard it is for me to admit that.
Hint: It’s fairly soul crushing.
Let me say it again, just to be crystal clear.
My hips and backside did not fit in the seat that was purchased for me. The smallish armrests were cutting so tight that my right side is bruised (admittedly, this is not hard to do – I am, after all, a peach.) My feet were pushed into the seats in front of me, causing the guy in the seat I touched to turn around and curse at me. I apologized. He didn’t care. I get it. I wouldn’t want someone’s shoes touching me either.

And here I was, a red-faced, sweating, mortified, superfat, middle aged woman – struggling.
To sit in a seat.
Not to run a marathon.
Not to end poverty or the Russian civil war.
Not even anything 95% of people see as difficult or noteworthy.
I was simply struggling to enjoy a day in my life – over a seat.
I had already been thrown for a loop when we got to Camden Yards 2 ½ hours early and the nearest handicapped parking space was over a half mile away from the front gate. But this development?
It’s “worst nightmare” material for a fat person.

It ranks right up there with hits such as:
“Don’t make eye contact in the airport so you don’t see people silently praying they don’t have to sit next to you.”
“Will the carnival ride safety thingmabob close over me,”
And the ever-popular Summertime standard,
“What are the odds I’m about to break this plastic patio furniture?”

By this point, dear reader, I’m sure you’re curious as to why I’m sharing this painful and embarrassing experience. I assure you I don’t want your sympathy. (Candidly, the sympathy makes it worse, like having a sore spot in your mouth that you can’t stop touching it with your tongue.)
What I am hoping for is the opportunity to share something about physical disability and its impact on my overall mental health.

Because they go hand in hand for me, those two things.

No matter how hard I try to separate them or say one doesn’t have anything to do with the other.
For some folks, that’s true. For me, it’s not.
As my physical health has declined, so has my mental health.
And it has extraordinarily little to do with a number on a scale. The last time I weighed less than 200 pounds was, I dunno, 1990?
Yes, I have become progressively heavier over time.

But it wasn’t until the heaviness stopped me that the floor fell out from under me.

Losing the ability to use my body effectively has been one of the hardest battles I’ve ever fought. And I’ve been fighting it for FIFTEEN YEARS, when I first hurt my back. In 2008, I thought nothing could be as bad as the shooting, stabbing, burning pain that ran down my legs. In 2019, I thought that nothing could be as bad as the numbness and tingling that set in or the general loss of balance that made it difficult for me to walk? (Remember that whole summer I fell down on sidewalks and ripped the shit out of my knees and elbows?) Fast forward to today, and it’s difficult for me to stand without swaying. If you’ve stood next to me for a period longer than five minutes, you’ve seen it. That slightly intoxicated- looking step back and the frantic glance for something to hold onto? Or when we’ve hugged, and you thought you were going to have to catch me because I’m pitching forward?

It’s nerve damage.
It may be irreversible.
And it’s because every doctor I’ve seen says the same things.

Lose 100 pounds, then we’ll talk.
Or,
If I operate now, your lower belly will just rip out all the progress.
Or,
This may or may not improve if you lose weight, but it couldn’t hurt to do that first.
And finally, my favorite – the ever-so-gaslighty,
You’re clearly intelligent, Erin, you don’t need me to tell you what the problem is. Let’s talk about you going keto and getting some of this unnecessary weight off and then we can plan for the future, hm?

So, you try.

But.

You cannot move well when you’re in near-constant, level 8+ pain.
So, you stop moving.
And then you stop saying yes to invitations.
And you isolate yourself.
And you get depressed.
And suddenly, you’re 44, you can barely walk a mile without crying from pain, you don’t fit in the goddamned seat, and you were raised in a time period where asking for help, accommodations, or acceptance while fat wasn’t just discouraged, it was programmed into your brain that it was not an option.
And then you decided to wage the goddamned battle of your life to have gastric bypass.

Because you remember.

You remember what it was like when you COULD do things.
When you could walk the length of the Ocean City Boardwalk and back – TWICE- for the sheer fun of it.
When you Varsity lettered 5 times in high school.
When you knew what it felt like to go down the first hill of a roller coaster on a hot night in July.
When you could stand on stage in a spotlight and not be worried you’re going to fall over because your equilibrium is terribly poor.

And you figured out how to ask for the help you need.
And the help you deserve.
And the help you should’ve been given all along.
**

In conversations, people often ask me, “So, Erin, what’s next for you? Any big projects on the horizon?”
Yup. I reply. This one is really personal. A play in two acts. It’s called “My Life.”

And we’re currently at intermission.

The Great Ozempic Saga

The Great Ozempic Saga Continues:

Healthcare, Fatness, and Other Dramas.

By Erin Riley

If you don’t want to read about my diabetes and bariatric journeys, scroll on by, superfly.

At the beginning of 2023, my primary care doctor was really very pleased with my blood work. Total cholesterol at 122, B12 and D are normal for the first time in like, a decade. Iron is up. And my A1C was sitting at 7.2. Which isn’t greaaaaat, per say, but below 7 is the goal, so there’s progress. Ever the perfectionists, Dr. Joe and I decided we were going to put me on Ozempic to try and lower that Hemoglobin and make it my bitch. He prescribed it. I started taking it once a week. BOOM. Daily fasting sugar came down about 15 points and I dropped 20 pounds in a month (WHICH WAS NOT THE GOAL. I REPEAT. NOT. THE. GOAL. I won’t say it wasn’t a bonus, but it was not the prescribed plan.)

I finish my first injector pen, I go for my follow up, we do some in- office blood work and things look freaking great. I haven’t had so much energy in months. We decide to keep me on the half dose because it’s doing the damned thing. Wonderful right?

Yeah… not so much.

After 2 1/2 weeks of fighting with CVS, fighting with Medicaid, EIGHT phone calls equaling 4 1/2 hours of my life, my doctor finally gets the damned drug RE-approved and the pharmacy processes it.

ONLY FOR IT TO BE OUT OF STOCK!

And why? Why is it out of stock? Because the Kardashians have named it “the new Hollywood Weight Loss Drug.”

But.

Before you think I’m about to bash people for trying to lose weight with medical intervention. Let’s Pause.

Cause I’m not.

Who I AM going to bash, however, is the inherently fatphobic, entirely greedy, and wholly over/under-regulated American Healthcare System and its evil twin Big Pharma.

Let me start with a disclaimer. IT IS OKAY TO BE A FAT PERSON. You are valuable. You are beautiful. You are loved. And you can certainly be healthy regardless of size. I have been a fat person for 40 years. I’ve hated myself for it. And I’ve done more than my fair share of penance to the medical fields who have taken care of me over the years. I’ve also learned to love myself as I am physically, however, my fatness is now a clinical issue affecting the quality of my life. So, don’t come at me. You don’t want to meet my Sagittarius rising…

The American public has been force-fed diet culture since the beginning of time and in main-stream media since as early as the 1940s. Specifically targeting women (although men aren’t immune, that’s for sure…) with slogans like “A Moment on the Lips, Forever on the Hips” and “Nothing Tastes as Good as Thin Feels” have been causing disordered eating and chronic depression and anxiety for literal generations. And why? The propagandists would have you believe it’s out of concern for human health, concern for the drain fat people are on the health care system, etc. But let’s grow up here for a second a face facts. It’s about MONEY. $$$ Did you know that the Global Weight Loss Industry made 470 BILLION dollars in 2021? Here’s the resource on that: https://www.businesswire.com/…/Global-Weight-Management…

The facts are pretty simple.

Fatness is blamed for the American Health Crisis

Fatness is stereotyped as lazy, disgusting, ugly, and unintelligent

Fat is equated with evil in mainstream media

BUT

Obesity (I hate that word) is classified as a chronic disease

Fatness doesn’t always have to do with lifestyle, it is often genetic

Calorie deficit and exercise rarely work for people who are genetically coded towards fatness.

AND

Health Insurance considers Bariatric Medicine, in many cases, COSMETIC

Health Insurance refuses to cover drugs like Ozempic, Wegovy, Mounjaro, etc., because fat people should just be able to starve their bodies into submission

2 out of every 3 fat folks surveyed stated “their doctors don’t listen to their problems and immediately point to their fatness as the issue.”

We have become so programmed to hate fatness and fat people, that life-improving and, in some cases, live-saving measures are being denied on the basis that fat folks should “just try harder” or just “do better.” Speaking a person who started her first round of pediatrician-prescribed Weight Watchers at 7, I’M NOT SURE HOW MUCH HARDER I’M SUPPOSED TO TRY.

So, I wait. I wait for the fucking Ozempic to become available. And I WELL-WISH the HELL out of the people who are using it for WHATEVER they need it for. Diabetes. Weight Loss. Whatever. I just want us all to have a damned shot. And that isn’t too much to ask. It’s just kindness. It’s just taking care of humans. It’s putting actual health and healthy practices over discrimination, greed, and hatred.

Also. How about we make more of the damned stuff. And regulate it so it doesn’t cost $12938471239 for people who don’t have health insurance.

It’s NOT that hard.

P.S. Hold your fat friends, trans friends, queer friends, BIPOC friends, and drag friends close. It’s exhausting when they keep coming for us.

https://www.usnews.com/…/body-positivity-weight-bias…

43 Years Worth of Wednesdays

It’s remarkable –-

When you realize you have so many more memories

Then exist in the photographs of your life–.

Your documented proof

Is lacking.

Why?

You didn’t deserve love?

As you were?

As you are?

Were.

Are.

It has to come from within

The unyielding belief that we deserve to be considered

Remembered.

Captured, if just for a moment.

Necessary

But unfathomable

How do you even start?

Two Steps Forward, One Step Back

I’m a day late. But more on that later…

January 17, 2022

Weight: 344.8 (+2.2lbs)

Fasting Blood Sugar: 146

Blood Pressure: 117/87, pre-medication.

*-*

Goals for this Upcoming Week: We’re going to keep working on waking up earlier. Some days are great, others need help! Finish the English Channel Marathon! (You read that right! I finished my first Conqueror Marathon on 1/14, started a new one the same day, and as of today, I have 7 miles left!!!!) Incorporate more flexibility and mobility training into each day. And finish three big items on my personal To-Do list.

*-*

A few things I learned this week:

First and Foremost. I absolutely MUST treat my recreational binge eating and food addiction as the Eating Disorder it is and not as “bad behavior that deserves scorn/punishment/guilt.” This is a mental illness and a distinctly patterned one. It happens late at night and it’s usually hundreds of empty calories consumed while watching Beat Bobby Flay and scrolling through TikTok because I’m in a pain and can’t sleep.

Even though the scale says I gained back 2.2 pounds (and I know exactly why that happened) I also finished my first 26.2 mile walking marathon with The Conqueror App. Confession Time – I gave myself 8 weeks to do this marathon. WHO DOES THAT? EIGHT. WEEKS. I wound up doing it in 15 days. At first, I hooked my fitbit up to the app and it started recording all of my movement. I didn’t want that to be the case. I wanted the walked mileage to be intentional to the marathon. As a result, I disconnected the fitbit and started entering my miles manually. I’m shocked that it took me two weeks and a day. I’m proud of myself. And already onto the next one. My activity between the first week and second week of January DOUBLED. That’s a trend I want to stick with as much as I humanly can!

Moderation, as good as it is for the normal human, is incredibly difficult for me. People always say things like “Just have a little bit.” “You can have it, but stick to the serving size.” “Don’t deprive yourself.” Okay. I get it. If you are a person who has willpower and can do something like measure yourself a 1/4 of Ben and Jerrys and only eat that – I BOW BEFORE YOU. That’s not me. If it sits in my pantry, I think about it. A lot. Like a drug addict thinks about their next hit. Because that’s what sugar and processed carbs are for me. They’re like a drug. So it’s important for me to skip adding things to my cart like rice krispy treats. I won’t eat one. I’ll eat four. And I’ll hate myself for it. I’d rather not hate myself.

*-*

And here’s a moment of coming clean.

I almost didn’t post this blog. The inclination for me let it slip by and pick up next week was strong. Why?

Because my initial reaction to that 2.2 pound weight gain was “Oop. Fail.” You were doing so well. And then you eased off the gas.

AND EVERYONE WILL KNOW AND TSK AT YOU.

It’s a lie. Some of you may mentally tsk at me, but overall, you’ve supported me. The biggest TSKer is me. Myself. My own worst critic. My self-loathing has been the one thing that has stayed consistent about me over 35 odd years. I didn’t want to post because I didn’t want the crestfallen feeling of letting myself down. Oddly enough, I got over that moment VERY quickly. Record time.

I’m ready to stay the course. If I fall off the wagon again, there will always be a hand to pull me back up and a place for me to sit. The most difficult part is allowing myself the grace to believe I deserve to take up that space.

But I’m worth it.

What a Difference a Mindful Week Makes!

January 9, 2022

Weight: 342.6

Blood Pressure: 116/72 – pre-medication

Fasting Blood Sugar: 126

Goals for this week: Wake up before 9am (this is a real issue for me because I don’t sleep well.) Stay consistent with getting my steps in. Keep working on decluttering the condo. Put Isabelle and Burnley’s cat tree together. Make a good faith attempt to eat all three meals in a day.

There were a few things that happened this past week that I’m really very proud of – exercises in mindfulness that have made a big difference in the way that I feel. I haven’t missed a dose of medicine! This is huge for me. I don’t always like the way some of my medicines make me feel, specifically the ones that exacerbate my GI issues. But I haven’t missed a pill, a vitamin, or a shot and it makes a big old difference. I haven’t eaten anything after midnight! Let’s just call it like it is. I’m a mogwai and when I eat after midnight (which, frankly, has happened a lot in the past) I see it in my blood sugar and on my body the next day (eye bags – excess sugar gives me freaking eye bags!) Ideally, I’d like not eat after 8pm, but the theater lifestyle doesn’t always allow that to work, so one step at a time! Meticulously counting steps and activity! I have been utilizing my Fitbit religiously. While a combination of snow and sciatic neuropathy has kept me from distance walking the way I’d like, I’ve used my pedal machine and upped the ante with my general activity, which has been so vital to how good I’ve been feeling, even on my bad days! I’m also so, so grateful to my folks in The Conqueror Crew on Facebook! We’re putting in the mileage together towards marathon goals! It’s a loving, encouraging group and makes me eager to post milestones, knowing we’re inspiring each other along the way.

So. With all of this in mind, we head into another week of mindfulness – not just about food and activity – but about wellness, happiness, and a positive attitude! These are all VITAL to my journey and I’m really glad to have found my stride.

Reporting for Duty

January 2, 2022

Weight: 351.8lbs

Blood Pressure: 141/80 pre-medication.

Fasting Blood Sugar: 220 (eep. Don’t @ me. I forgot to take my insulin shot last night and have set an alarm.)

Today’s Goals: Walk at least 15 minutes towards my marathon. Organize my bedroom. Stick to the scheduled food plan. CLEAN MY MIRROR. BECAUSE LOOK AT THAT MESS.

If there’s no pics, then it didn’t happen, right? So here are a few. Zero make up.

Isabelle INSISTED on being in the picture.

Food for Thought

TW: Food Addiction, Depression, Anxiety, Body Shaming, Fat Shaming, Body Dysmorphia.

It’s the last day of 2021.

And it has been a year.

I’ve had more than my fair share of health struggles – both physical and mental – but there have also been monumental breakthroughs. And this is probably the biggest. Also, possibly the most embarrassing, but I’ve learned not to be shy about my struggles. It helps me to talk about it and, sometimes, it helps other people to know they’re not alone in their own battles.

So, here it is.

Food is my currently my greatest happiness.

Food.

Not relationships. Not art. Not the beauty of the natural world.

Fucking. Food.

And I may ask myself. HOW DID I GET HERE?

How did this happen? How did my every waking moment wind up being about planning what I’ll eat next? When I’ll eat next? How did a fundamental part of survival become more about pleasure and endorphins than fueling? It’s not an easy trajectory, but I have some ideas.

It’s pretty simple, actually. I am an addict.

That’s hard for me to admit and even harder for me to type for posterity.

But I am. I’m addicted to how food makes me feel when I’m eating it.

Somewhere along the line, likely right after high school (I’m still working on pinpointing the trigger) I started to fill the emptiness, the loneliness, the low self-esteem, the imposter syndrome – with food. I mean, who cares if you’re the only one in your friend group not in a relationship WHEN THERE’S NACHOS.!? Who gives a toss about being constantly undervalued and underestimated WHEN THERE’S A PATTY MELT? Oh, are those pretty girls and their boyfriends laughing at me? I’LL JUST ORDER A PIECE OF CARROT CAKE. And why does it fill the void exactly (other than the obvious physical filling of my stomach)? Well, I’m glad you asked. Turns out this is a learned behavior that is one part cultural and one part familial, which equals one whole road to fucked up that began before I could’ve realized where I’d be today as a result.

I come from a moderately large, primarily Eastern European, and Celtic, family. Let me explain what this means metabolically speaking. I’m built to outrun the English. I’m built to last through famines. I’m built to have a baby strapped to my chest while I plow a hop field somewhere outside of Warsaw. If I was a truck, I’d be an F 350. If I was a dude, I’d be a starting Middle Linebacker.

I come from a stock of mostly tall, broad, strong folks. But that stock is also predetermined towards… drumroll, please… you guessed it – Obesity! And from the very earliest of ages, when my mother was still responsibly controlling what I ate, that gene declared itself awake and reporting for duty in my sturdy little body. But here’s where it gets weird.

Along with those cultural components comes a familial element that may be the most challenging part of this battle. In my family? Food. Is Love. Grieving the death of a loved one? Make enough food to feed an army and EAT IT ALL. Celebrating a milestone? You need CUPCAKES! Is it the birth of our country? BRING ON THE BARBEQUE! Easter Sunday? MASSIVE BREAKFAST. Someone is sick? You make soup. And bread. And hot toddies. And cookies. Sadness? Feed it. Happiness? Feed it. Anxiety? Feed it. FEED. ALL. THE. THINGS. We showed our love for one another by making bread and breaking bread. We still do it. And it truly never occurred to me until I hit middle age that what we do? It is usually way too much. I always laughed at friends who said “Oh my god! Look at all this food! Are more people coming?” No, friend. More people aren’t coming. This is just for us. Because EATING IS HAPPY. And that mindset has bred an excessive habit that is not serving me well. In fact, it’s doing incredible disservices because I can no longer do the things I love. Those beloved things have been replaced with edible things – and that, my friends, is a slippery slope to try and balance upon.

Dr. Brenda (my therapist) and I have been doing a LOT of work on figuring out what makes me tick. It’s not always the easiest task to sit back and really look at yourself HONESTLY. And I say honestly, because the first word I typed was “critically.” That’s inaccurate. I’m pretty sure the easiest thing I do on the daily is criticize myself. But peeling back the layers to look at the damage I’ve been covering up with waffles is a straight up exercise in torturous liberation. I’ve eaten my way through heartaches and disappointments. I’ve padded my self-loathing in carbs and cheese. I have become Ms. Pac-Man in my quest to try and find something, anything, to be happy about. Which is insanity. Because there’s so much more to look forward to in my life. Food is just the fuel to do those things.

One of my health goals (for the rest of my life – not talking about resolutions, here) is to replace food with activities that make me happy. This blog entry is an excellent example. It’s almost 2am. I wanted pizza rolls. Instead, I diverted that want into expressing myself. It’s a win. A big one.

I’m not always going to succeed. There WILL be times when I give in, but when those moments of weakness show themselves, rather than following my old road of map of throwing in the towel, I’ll document it. Then I’ll really consider what brought me to that point and figure out what tools I need in my coping toolbox to give myself better choices in the future. It’s the only way for me.

It’ll help me get back on stage.

And get the feeling back in my feet so I can do things like get in and out of swimming pools and walk on the beach and not fall over and rip all the skin off my knees and elbows.

These may seem like small things to most people.

But the thing I want most is to be able bodied again.

Not food.

Judgement Day… or, a Normal Thursday Afternoon

CW: Fat Shaming, Visible and Invisible Handicaps, Bullying, Health Journey, Weight Loss.

Yesterday afternoon, I went grocery shopping. I parked in a handicapped space at Weis, got out of my car with my reusable bags in hand and walked into the store. There was an older woman, likely 60 – 70 years old, walking in behind me. I pulled out a grocery cart and then pulled one out for her as well. She smiled and said thank you and we both went about our business. Or at least I did. She was on a whole other mission.

I spent about 30 minutes in the store. Got everything I needed. Went to self-check-out. Paid for my groceries. Headed for my car. And then, out of the blue, there she was. Rolling up behind me with her cart that had one tiny bag in it. She waited for me. She actually fucking waited for me.

“Hi! How are you?” she started, in a friendly enough way, then, before I could answer, “Don’t you think these spaces should be reserved for ‘actual’ handicapped people?” I looked at her. She shrugs her shoulders and smiles condescendingly. I respond, “I’m not sure what your angle is, but I am, in fact, actually handicapped.” She beams at me again; in the most patronizing way you can imagine. “Oh no, sweetheart,” she says, “I mean actually handicapped, like, people who served their country and lost a limb, or the elderly, or, you know, people with mobility issues. Not people who are just obese. You’d do better to park farther away and walk. You look like you need it.”

Then the sky opened up and it started to pour. I was so flabbergasted I just stood there for a moment while she ran for her car. I let it rain on me as I watched her pull out of the space. As she passed by, I did something I’ve never done in my life to this point. I smiled like a crazy person and tossed both of my middle fingers into the air. I jumped up and down for good measure. I wanted to make sure she saw me. And she did. Shaking her head and judging me all the way.

You know what, lady? Go ahead. Because you mean exactly NOTHING to the fabric of my life. Zero. Zilch. Nada. In fact. It didn’t even hurt my feelings. I’m so accustomed to this behavior it doesn’t even phase me anymore. But I’ll tell you what really does cook my goose – uninformed opinions, unkindness, and a simple lack of polite behavior. We experience it more and more every day. I’ve said it once and I’ll say it a million times in the future – the dawn of social media has been the death rattle of social grace. People feel the need to share their biases openly and wantonly as though we’ve all been waiting with bated breath for their opinions. Folks have become seemingly feral in their zeal to share their innermost thoughts and feelings. And the result? Well… in my opinion, it’s often pretty gross.

Let’s examine this for a moment, shall we? This person, who felt the need to share her thoughts about my fat and disabled body, followed me through a supermarket and waited for me to come out. I had three large bags of groceries and she had one small bag. She was finished way before me. She could have just gone home and beat the torrential downpour we were standing in after she lectured me. But she didn’t. She lingered in the parking lot, waiting for me to come out so she could tell me how she felt. She spent her time trying to guilt me – FOR PARKING IN A SPACE I AM ABSOLUTELY ENTITLED TO USE. And not because of my fatness, but because I have no less than seven diagnoses that render me handicapped by the State of Maryland. And if I lost 200 pounds overnight, I would STILL be handicapped because morbid obesity (ICD 10 code E66.01) is NOT one of those diagnoses.

Asthma. Compression of the Sciatic Nerve. Herniated discs at C2, L3, L4, L5, S1. Altered Gait. Compressive neuropathy of both feet. Foot drop. Loss of balance. Apart from the altered gait that causes a limp when I walk, these are all handicaps you CANNOT see. I look just like any other stylish human with wild hair and a penchant for rainbow tie dyed clothing.

Yet this woman wants me to give up my handicapped space for someone more deserving. More valuable. Which, in our culture, means Less Fat. I find it ironic that one of the few times I become visible, or seen by the greater populace, is when I’m being targeted for my body size and shamed for it. 99% of the rest of the time, people look past me, around me, through me. You’d be surprised how many times an elevator door closes or a man in a suit holds a door for a normal sized woman, but then suddenly becomes blind when I’m rushing toward him. My invisible handicaps and visible fatness make for the perfect equation for prejudice, distrust, and scorn.

It could be an incredibly depressing a hopeless situation if I let it.

But I won’t.

Get ready for more middle fingers, world. Cause they coming.