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.

12 thoughts on “New Year, Same Cliché

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  1. Hello. I saw you on a documentary on Netflix, and got the urge to tell you that I’ve read a book written by a guy named Anthony that is called ‘medical medium’ where he talkes about healing with food. I just wanted you to know that book exist and maybe it could be helpful. I wish you all the best /svava

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  2. What Yellowriver said.

    The worst possible thing you could do is to SUPPRESS your anger Jamison. That’s not to say you should pounce every time anyone makes what you consider to be a mistake. But you beat yourself up too much for calling out the drug-snorting ‘helper’ who may have just fallen apart to the extent she did, because she was on drugs!

    But holding in anger when it needs to be released is very, very important to your health. And it’s quite common in our community to do just that for fear of offending someone or believing they’ll never come back.

    How does one begin to release this anger? The best way by far is to CRY. Let it out. If it hurts at times it hurts, but by letting it out the hurt will gradually diminish, and the burden the stress of the anger is putting on your body will diminish. It WILL.

    And I think if you explain to everyone around you that it’s not you, but the PAIN and FRUSTRATION talking, and that you do appreciate their help, and as you say, will try to reel it in as much as you can this coming year, then things should go better for everyone, including you.

    And I’ll repeat what I said a year ago or so — I’m not so sure you’ve released the anger and perhaps guilt over that traffic accident a year or two before you crashed. Even if the cops, etc., let you off the hook, I wonder if you’ve let yourself off and really let go? Again, any sort of holding on to anger just adds to your overall stress levels, which affects everything, especially your gut.

    I HIGHLY recommend the book: “When The Body Says No” by Gabor Mate, M.D.. It shows the connection between the stress of holding on to anger and/or covering that anger with fake smiles, etc., and serious illness like cancer, MS, ALS, and Alzheimer’s. There’s even a couple of quick mentions of CFS and fibro. Believe me, it’s an eye opener.

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  3. Thank you for this. I hate sayings I hear all the time like “it is what it is” or even “best version of myself”. Sorry about that one because you used that one in your article. My kids use it all the time. They are in their 20s. “Im talking to someone” is a good one too. Anyway I feel and can relate to your post. My mom and dad are fully supporting me since I can no longer work. Whenever I see my dad he asks me how I am. I get so mad. A nice gesture of kindness and I get mad. I feel like shit every day dad. And one of my family says did you read that article I sent? Thats a great one because I really have difficulty reading. They should know that and I take it as a punch in the gut because I miss reading and writing. This is taking me a long time to write and lots of energy. Or one of my kids saying hey you should try this lotion or this herbal tea or have you tried meditating? No it wont work nothing works just leave me alone. They just want to help and Im an ass. Someone else tells me about a fire or ems call. Thanks for telling me what Im missing the most. Im not saying Im like this all the time. But yea most of the time. So thanks again for writing this article. At least I know Im not alone in my fight to become kinder with my pain.

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  4. Your honesty, especially in this world of dishonesty always hits like a whip to me Jamison. It’s needed and it’s so important. Again, because of such similar circumstances I relate deeply. In fact one of my repeated internal voices says “You are losing the best parts of yourself and only becoming the worst part of yourself” and I don’t know how to stop it in the landslide of abilities falling into the ocean every year. I don’t like how I have become so selfish about every sound, sight and atmosphere I can endure and what an absolute pill it makes me.

    I have found a small solution. Although not perfect it has made a difference. Every few months when I can manage to afford it I skype with my therapist and let out all the anger and grief and other emotions I can on a professional instead of my partner and friends. It is always cathartic. I think what helps me most is his insight into no matter how awful I think I am he sees and reflects what I try to do for others, or my care about cruelty and world and other things that remind me of who I am outside the swirl of my emotions. Something I would recommend to anyone who can manage the energy and cost.

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  5. Hi Jamison.

    Thanks for a very open and personal account of your life this past year.

    Personally, I always think we should try to be the best version of ourselves as we possibly can be. Identify the bad bits, like you’ve done, and aim to make it right, which you are doing.

    On the subject of feeling justified in our actions because we are chronically ill, well I think whether healthy or ill, we can’t justify our bad behaviour, but we certainly can learn from it, and we can put some circumstances if not all right.

    As I’m deteriorating more into being bed bound rather than just house bound I am finding myself becoming more emotional when people come into my room. I’ve become aware of how much I think about myself and not others, including my family. I have all the reasons in the world to justify off loading to my visitors as I am adapting to this new place of ill health, but I must be careful not to offload too much. In fact, I’ve been reminded today to ask others who care and visit me, how they are, and what they are up to rather jumping into that victim mode. I refuse to be a victim to this illness! I refuse to let this illness disallow me to be the best me that I can be, even if that is from a bed!

    And you are right, being ill can change oneself often very slowly and slyly, but when we realise it the best thing for us to do is change it! So, well done in identifying the thing you don’t like being, and well done in realising you are not justified in being that way even if you’ are sick and disabled. So, feel good about that, move forward, and when your next opportunity comes choose to be the person you want to be.😊 Much love. X

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  6. I feel like I have had some anger issues over the years and maybe still do. And I, too, have sorta discounted my anger problems because I’ve had a lot of shit happen to me in my life. Anger is hard for me to feel. It tends to cover up other emotions I don’t like feeling. I learned that anger was preferable to sadness, for example. So, often, I will get raging pissed–exploding or just leaving in a huff–when I want to burst into tears–and I’ll have absolutely no idea why. This comes with my version of PTSD quite a bit. I’ve also lived with someone with a major anger issue for the last 10 years and have often been the person he takes things out on, quite a bit–which has resulted in me having a lot of rage towards him–but not being able to express it because of what I fear it will create in him. I’ve really had to learn how to deal with it–because it is like a cancer. For me, a lot of it has come from feeling powerless both over myself and over other people. The biggest help has been setting boundaries and enforcing them. I’ve found it helps me feel more in control, but it also gives people a roadmap for how to deal with me. And it gives me permission to act in ways I’ve determined support my needs. I also have learned that the more I value myself, the less angry I seem to feel. I tend to not accept the crappy behavior of others and have nothing to really trigger the crap that’s just waiting to come out. Valuing myself also helps me deal with the sadness I have before it has a chance to be covered up.

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  7. I am with you, J, on the New Year’s resolutions. Last night I was reading wishes for a Happy New Year. It is a nice sentiment and I appreciate those who sent me good tidings, but the expectation of a happy new year is all-encompassing and unrealistic.

    Humans who expect happiness are always disappointed. I think that happiness is overrated. and it is fairy tale thinking to chase after it. I call it finding Joy in Small Wonders. Live in the moment. Ahuh. My brain can stay in the moment for hours and THAT is one of the things I hate about this disease.

    I have been sick since 1980 with one remission to about 60% which lasted a few years until my downward spiral left me unable to talk coherently. All that Tap, Tap, Tap in my brain did not make me think I had better take care of my upchucked self. My short and long-range goals drove me to hours of THINKING and writing. I enjoyed the challenge and my brain was happy being engaged.

    Once I moved to yet another project not involving advocacy, two things happened. One, my creative brain was shot which was frustrating. I tried to be patient, but I just felt mad. I was exhausted. Two, I got the cold from hell that lasted two weeks and I never recovered.

    Then I was in ER intensive care for six days and after release, I spent the entire summer doctor hopping from one specialist to another ( on referrals) because no one could figure out what was causing my head to toe symptoms.

    The point is, my quality of life is way down, but my brain surges because I want to finish my project. Then comes the expectation that I work every day to move forward. I cannot do that, so I must alter that expectation and set smaller goals. However, my body and brain are misbehaving. I sleep 10 – 12 hours a night to get out of bed at noon and wake up a bit by 1 p.m. RIght now, I am not able to change that. I want reactivation of SOMETHING so the length of my day, my time to work is more than two hours.

    Can I change something about myself? I know that I am more functional than most because I am upright most of my shortened day. However, my perception is that I need to “WAKE UP” enough to take a metaphorical step forward or accept that my quality of life will be like a stump. I do not want to be a stump.

    I grew up in an environment where anger was a valid emotion but was only expressed within our house. Facing facts, and being honest was also taught by example in my crazy house. In the long run that was good. Now I can feel anger, but I am far too exhausted to express it.

    I do not let anger or frustration simmer. I feel it, express it if I can and then stuff it up. These emotions pass, but I am sensitized to so many things that are unfair for people in general, unfair to women, unfair to kids. When my grandchildren complain about small things, I tell them life is unfair. But they are too young for the rest of my thoughts.

    Adapt or die? Grim Reaper stuff? No. Accept, adjust, adapt, and shove the meanspirited people out the door. (Dealing with Afflicted co-conspirators must have been a special kind of hell. Maybe your gruesome picture was the evil in Jamison photo that does not at all express who you are.) Jamison, your compassion erupts! Believe me, you are Lovable and Capable.

    Please allow this 69-year-old very experienced granny to preach a bit. Thank you in advance.

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  8. I relate to this a lot. I usually feel angry because I feel like one of life’s victims (I feel guilty even writing this to you because I’m not bedbound now, although I have been). I have a very draining family situation that is making it worse. I often notice my anger coming out at random strangers — cabdrivers, customer service people as you said, etc. I don’t feel good about it but I feel it’s a side effect of being so traumatized by everything. I’ve tried meditating but I can’t seem to do it. Let me know how you get along! I think many spoonies have that side to us and our anger is justified. I wish mine didn’t come out at the wrong people.

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  9. Be careful what your own emotions are allowed by you to do – to you.

    I can only imagine how frustrated you get.

    I’ve never been as sick as you are – I have never had to be physically cared for, though I only got things done because I had assistants who gave me 6-10 hours a week of help (which I could afford to pay for at reasonable rates) – so I can’t completely understand, and I certainly have no base from which to judge anyone.

    I do know that the aftermath of strong emotions wipes me out. I think it is that the feelings leave behind adrenaline and other molecules which have to be removed from my bloodstream by my liver, and that process doesn’t work very well. So I pay a long time for what other people might find cleansing. So I’ve learned to damp my emotions down to almost nothing – after first acknowledging them, and realizing that I’m entitled to them. It was hard – but necessary to survive.

    It is weird, as a human.

    Some of it goes into my novels.

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  10. I used to think I was a real asshole, covered up with some “nice” when I had the energy. Then I started learning about health and found ways to reduce some of the inflammation in my body. Lo and behold, I stopped being such an ass. I was literally amazed that the bad behavior was gone – turns out it wasn’t me at all, it was my brain being inflamed. I don’t have it all figured out yet, but I’m working on it. Now when I’m being a complete dick to loved ones I know I ate something I shouldn’t have, or my immune system is over-active for some reason. Doesn’t help from their perspective – I’m still being a dick. But it does help me to know that inside – the real me – isn’t vicious or irritable. That’s the illness causing brain problems. The real me (and the real you) is actually loving, peaceful, patient, and kind.

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  11. I once beat the hell out of a metal ironing board with a wooden pole. A new boy friend sitting in the other room was terrified (imagine the noise!) Anger is an energy that wants to move, it needs to be expressed in ways that are not hurtful to other people. Although exhausting, it is worth doing for the clarity and sense of calm that follows; be careful with yourself though.

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