New Year, Same Cliché

New Year, Same Cliché

I hate New Year’s resolutions. Why? I don’t know, I get why people make them, and even more so why people abandon them, but has anyone ever actually followed through with a New Year’s resolution? I imagine someone has — some poor, neurotic soul who is actually a robot, and not at all human.

Even when I was more dedicated to these types of things — back in my early-twenties when I worked out obsessively and dieted often — I still didn’t believe in New Year’s resolutions. Maybe I lacked the creativity to think of anything in my life worth changing, but more likely, I was probably just unenthusiastic about starting the year as a cliché.

This New Year’s Day, however, is different. I’ve actually thought of something I’d like to change in the coming year. But whatever you do, please, don’t call it a New Year’s resolution. Sure, I’d like to get my health back, and even lose some weight, but there’s something else I’d like to change — I need to stop giving myself carte blanche to behave in ways of which I’m not proud. One example: my anger.

An Angry Year

Recently someone I love chastised me for my anger. This, of course, only made me more angry. But after I calmed down, I realized that part of why I get so angry is because I have essentially given myself carte blanche to act impulsively, even immorally, at times.

I admit that taking my anger out on people who don’t deserve it is unacceptable, but for a long time I’ve just accepted that this is how I am. Many times, however subconsciously, I’ve felt that everything I say and do — all the anger and bitterness I feel towards the world — is entirely justified. What’s more, I’ve felt that I shouldn’t be punished or held accountable for my unflattering moments because of what I’ve endured in my life. To some extent I believed that the horrible things I’ve been through exempted me from accountability.

But that doesn’t really work, does it? If it did, we’d have a lot of people getting away with some truly heinous things.

Maybe it’s just my idealism, but I like to think that good people act good, even after they’ve been wronged. It’s not like Nelson Mandela spent 27 years in jail and immediately went out and killed the people who detained him. The parents of mass shooting victims don’t go assassinate the lawmakers who have failed to prevent such tragedies. But for some reason I feel that all the unsavory things I’ve done in recent memory are completely justified. I feel that I’m owed a moral Get Out of Jail Free card for having lived through a fatal car accident and an illness that kept me from eating solid food for 18 months.

I should clarify: I haven’t murdered anybody or even slashed their car tires. But I have berated customer service employees because my order was a day late, something that surely wasn’t their fault. I’m an awful person, I know. But seriously, this is the type of thing that shows that, despite the disadvantages I face as a disabled person, I’m still privileged in some ways. Although, it may be because of my disadvantages that I feel a strange sort of entitlement to act in unflattering ways. The hardest part of my life is that my poor health makes it nearly impossible to be any semblance of the person I strive to be.

Even worse than my battles with customer service employees, I’ve been mean to and hurt some of the people I love most in this world. And for that reason, at this moment in time, I’m not the person I want to be. I’m not a bad person — I am human, after all — but I have entered into a gray area that makes me question what crosses the line between “being human” and, well, being a shitty human.

In the last year I’ve called some of my loved ones assholes. I even told one of my own family members to “have a nice life” because she couldn’t help me. I felt entitled to help from the people in my life, but also entitled to my shameful reaction when they couldn’t deliver. I’ve hurt the feelings of the people I love most, and for that, despite deserving their help and not getting it, I still feel incredibly ashamed.

I’m trying not to come across as a martyr here, but I also want to show how illness, and the trauma it causes, can change a person. In my case, my struggles make it impossible not to be ashamed and angry and depressed and sad and every other feeling one can feel. Well, except energetic. That’s the one feeling that illness excludes.

I have all these traumatic memories and no way to cope with them. I’m disturbed by memories of strangers coming into my room and obliterating my privacy just to keep me alive.

One memory still haunts me, not because of what happened to me, but because of what I did to someone else. One of the dozens of caregivers that I’ve had over the years was rattling off a list of questions for me — “What do you want next? What’s it gonna be?” She reminded me of a blackjack dealer all hopped up on cocaine. I couldn’t keep up with her words, but she just kept going, spewing question after question while I was too sick to even sit up. Finally, in a moment of exasperation, with a deep, sonorous, and angry voice, I shouted: “You’re exhausting me!”

It was sort of terrifying. For starters, I could only speak whispered sentences, so I think we were both surprised at how loud my voice got. But also, the words came out of my mouth with force that this woman hadn’t heard from me before. She was really shaken by it. She started crying and ran out of the room. I think this is why it still haunts me so much. I used what little strength I had to make this woman cry, and for what? Because she was too loud and energetic?

Well, she had been snorting drugs in my bathroom, so maybe that makes my reaction less awful. But I still made the situation more traumatic — for her and me — because I couldn’t process my anger. It was a moment, a culmination really, of years of trauma and illness. But that doesn’t change the fact that actions have consequences — I made that woman upset and myself sicker because I couldn’t control my emotions. Maybe I’m being too hard on myself. I’m not sure if, given the circumstances, I could have acted differently, but if it was possible I should have. Regardless, there’s something to be said for moments like this, I’m just not sure what that something is.

Get a Grip

2018 was a really hard year. My health wasn’t the worst it’s ever been, but it didn’t exactly improve either, and then there was the backlash from Afflicted and other problems with my personal life. These things took a toll on me and inevitably stoked each other to only make my life harder to handle. So, needless to say, I wasn’t the person I wanted to be in 2018, and I’m not quite sure how to reconcile that.

How do I avoid being the worst version of myself when I’m stuck in some of the most awful circumstances I’ve ever been in? How do I rise above the toxicity on social media when, even on a good day, it already feels like the entire world is beating me up? How do I give my loved ones room to be hurt by, or frustrated with, me? How do I give myself the room to be frustrated with them and angry with the circumstances that surround us? How do I regain the trust of someone I love and assure them that I’m going to be my best self when I know in my heart that that’s not always possible?

I don’t have the answers to these questions, but I do know that a new year has begun, and while I don’t believe in New Year’s resolutions, I do believe in living as best as I can as long as I can. So, for now, I’ll resolve to take one day at a time and try to be the best person I can be — hopefully less angry and more compassionate. Then, a year from now, I’ll see how I did.

BEFORE YOU GO…

1. Thank you for reading! (Cartoon by Barbara Smaller from The New Yorker)

2. If you would like to donate to support this blog I would be grateful! I’m also fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would LOVE to see you rocking an Ask About ME Shirt.

3. Over the past six months, AMMES has given away over $24,000 to help ME/CFS patients. Please consider donating to help the organization continue to do its work. All donations are tax deductible.

The fund has paid for rent, clothing, food, utility bills, medical bills, phone bills, home care, and other basic necessities got sick people in need. The fund purchased a bed for a patient who had been sleeping on a couch, a co-pay for a wheelchair, and shoes for a patient who had only flip-flops after an abusive ex had destroyed all her clothing. By far the most common request is for rent. Several applicants have been on the verge of eviction. Nobody in this country should have to face living in a car, or on the street, or in a homeless shelter, let alone someone with a serious disease.

The Hardest, Most Satisfying Sit-up Of My Life

The Hardest, Most Satisfying Sit-up Of My Life

“The output of energy, nervous and muscular, is enormous.”

– John Steinbeck, Travels With Charlie

I’ve never been one for New Year’s resolutions. Whether you want to make more money, spend less money, or conspire to take down an evil demagogue that somehow managed to swindle enough voters and is now going to govern the entire country without any prior political experience, the truth is, only so much is in your control. There are, unfortunately, variables in life that make it impossible to fulfill our New Year’s resolutions (although, if enough of us come together I think we can take down the evil demagogue).

So I don’t know what 2017 will hold. Nobody does. But I try to keep in mind that a year is an intangible thing, and an arbitrary one at that. It is, after all, just a collection of time — 365 groupings of twenty-four hours. And to think that such a collection of time isn’t arbitrary, is to think that D.B. Cooper and the mastermind behind the Kennedy assassination are hanging out on some tropical island right now — it’s a fun thought, but probably not reality. To put a stamp — good or bad — on a group of days is not something I mean to criticize. Instead, I urge everyone not to take that stamp too seriously, especially if it’s a bad stamp. And let’s be honest, 2017 is probably gonna get a big, fat, red stamp. But that’s okay, because it’s just a bunch of days and there will be more to come (assuming no nukes are detonated and global warming doesn’t kill us all).

Ha hmm. Anyway. That being said, I do love a good celebration and I certainly am one for tradition. So if I had to make a New Year’s resolution, it would be to exercise more. Well, okay, given my poor health, exercising is a bad idea. But nonetheless, my goal is to do more sit-ups in 2017. Sit-ups, after all, used to be my job. Before I got sick, I literally dealt with sit-ups for a living. If I wasn’t doing them myself, I was telling someone else how to do them. I’ve done tens of thousands of sit-ups in my life, maybe even hundreds of thousands, if you count every time I’ve gone from supine to sitting or standing. Some have been easy, others have been extremely difficult, but none have been nearly as tough as the sit-ups I’ve been doing recently.

Every few days I shuffle my torso onto a wedge pillow, then another, and then another, until I am at last sitting at a 45-degree angle. For some time I remain there, bolstered by three wedge pillows stacked on top of each other in a scene that can easily be compared to one from Hans Christian Andersen’s “The Princess and the Pea.”

From my elevated position, I push myself up to a full 90-degree angle, which can be tricky if I have a peripheral IV in my arm. And I usually do. My muscles then get weak and my head dizzy as I look around the room for a few seconds, taking in a view that seemed as high as Mount Everest this time last year. That, of course, was when I couldn’t lift my head even an inch in elevation. It is a reminder to me that while things may get better, they certainly don’t get easier.

With trembling muscles and achy joints, I slowly lower myself back down to the stack of wedge pillows and that’s it. That’s my one sit-up for the day, or week, or however long it takes my body to recover and then become antsy enough to do it all over again.

I remember in middle school, when I first started working out consistently, my muscles would tremble and shake as I struggled to do sit-ups. So in some ways I have come full-circle, going from unconditioned teenager to powerful bodybuilder to de-conditioned MECFS patient. I’m not sure what kind of messed up circle that is, but I guess it’s a full one. Anyway. These sit-ups I now do may not be as full-fledged as some that I’ve done in the past, but to me, at this moment in time, they are the hardest and most satisfying sit-ups of my life.

*Hey Everyone! I’m doing a t-shirt and hoodie campaign. Half of the profits go to my ridiculous medical bills and the other half goes to the Blue Ribbon Foundation. PLEASE SHARE!