“Everyone wanted me to feed them that story—darkness to light, weakness to strength, broken to whole. I wanted it, too.” – John Green, Turtles All The Way Down
Some people count calories, or brushstrokes, or steps; I count good and bad things that have happened to me. Throughout my life I have always tried to find patterns of good and bad things that have happened in my life.
This very well could be why I’ve never mastered the art of being happy. I think the first chapter in The Definitive Guide to Happiness says to not keep track of your luck.
While I can be fairly optimistic, I’m far from an optimist. And I’m certainly not one of those jovial fellows you see who always has a smile on his face. But I do take pride in having been able to smile during my darkest days.
And I mean that both literally and figuratively. During my darkest days I was very ill and bedridden in a completely dark room, but thanks to my family, and some exceptional friends, I was able to occasionally crack a smile. Although I’m not sure anyone saw it because it was so dark in the room.
Now I find myself in a similarly peculiar, albeit less miserable, situation. After a brief string of weeks getting around the house in my wheelchair, I’m now back to being bedridden. I can still tolerate some light — I usually open my drapes an hour before sunset. On good days, I can speak a few words, and on most days, I am still able to chew my meals. These are all things that, despite being stunted, bring me some happiness. That is to say that not being able to do them, as has been the case in the past, would make me even more unhappy than I am at the moment.
There’s definitely a glass half full/empty conundrum that I face every day — I am grateful for what I can do, but regardless of how hard I try to will myself to be happy, there’s no getting past my unhappiness.
The other day I was looking at recent photos taken of me and I couldn’t believe how sad I looked, even when trying my hardest to look happy, or somewhat cheerful. After looking at the photos I even took a couple selfies and tried to look as happy as I could. It was pretty much impossible. No matter how hard I tried there seemed to be a tint of sadness covering my face. Perhaps it’s partly my skewed interpretation — after all, I am admittedly sad and unhappy. So maybe, because I feel sad and unhappy, that’s how I see myself in the pictures. But I doubt that after everything I’ve been through, my face and demeanor is entirely void of the emotional blemishes stamped on my psyche.
I know it’s winter — people get depressed this time of year — but I know that my unhappiness transcends the seasonal pattern of depression. In fact, I love the winter months. And while I’ll admit it’s depressing to see all my friends and family through the looking glass of social media — going on winter adventures, buying Christmas trees, and shopping for gifts — it’s also nice to live vicariously through them.
One of the most frustrating parts about my current situation, however, is that I feel a weird sort of guilt about not being more grateful for the things I have. There are wonderful people in my life who make me happy. And I’ve managed to accomplish some amazing things this year that I’m very proud of, like writing for the LA Times and Washington Post. But because I am known for being a sick person who writes about being sick, there is an inevitable tinge of melancholy that comes with any sense of accomplishment I get these days. I would prefer to be known for accomplishing things as a healthy person. Don’t get me wrong, I’m glad I wrote about something meaningful, opposed to, say, the portable toilet ads I used to write. But my point is: While I certainly don’t expect myself to be fully content with my circumstances, I often wish I could be. I feel like I should have this overwhelming gratefulness just to be alive that, at the very least, supersedes all of my unpleasant feelings. And while I certainly am grateful to be alive, I’m also angry and sad that my life has been reduced to gingerly shuffling around a mattress all day.
Okay, you get the picture, I’m sure, but finding happiness in unhappy times is not essential, nor is it impossible. Sometimes, maybe even most times, depending on the circumstances, you just have to surrender to unhappiness and acknowledge the little moments of joy that get you through each day. It’s far unhealthier, in my opinion, to force or fake happiness during unhappy times than to just give in to your natural feelings of unhappiness. As I said, the last person I want to be is the guy who always has a smile on his face. That’s the guy whose neighbors suddenly disappear and then the police find bodies in his basement.
As I tell myself little bits of conventional wisdom each day, I also know that as long as I’m sick I will never be able to shake the feeling that I am unhappy and therefore ungrateful. I know it’s irrational and silly to think so, but it’s just how I feel. It’s hard to be inwardly grateful when I’m unhappy, and it’s even harder to be outwardly appreciative.
I have my needs met everyday. I never have to go without a caregiver or worry about how I’m going to get food. Yet some days I find it incredibly difficult to show my appreciation. Some days showing my gratitude for the people who support me can feel like an insurmountable task, almost as much as faking happiness. Sometimes the struggle to achieve these things feels like the same thing, the difference is I am always appreciative but rarely happy.
And perhaps that is part of the reason I feel so guilty and ungrateful — I have wonderful, selfless people taking exceptional care of me, but I often can’t even manage to smile at them. I know they understand, but still, I wish I could be happy around them all the time. For their sake and mine.
This reminds me of a dream I had when I was at my sickest point. It was a sunny day and light was streaming through the house as I got out of bed and walked around for the first time in years. There was a small group of friends and family watching from afar, each person flush with tears of joy.
The entire time I’ve been sick I’ve wanted to be that person — the person who brings tears of joy to dry eyes, the person who makes people believe in happy endings and the body’s astonishing ability to heal itself. I wanted to be that person so bad, perhaps even more than I wanted to merely do things that healthy people do. And to a certain extent I have become that person, or rather, I was that person and now I’m having a bit of an identity crisis. What happens when you are known for battling illness, then stop recovering?
I was everyone’s favorite recovery story, the Phoenix rising from the ashes, whatever you want to call me. I recovered to the point of getting out of bed in my wheelchair and standing up on my own. But now that’s a narrative I can only write in the past tense. Maybe I will write an even better narrative one day. Perhaps, after the current dip in my health has run its course, I will recover even more and walk on my own again. But for now, I’m back to just trying to stay afloat.
Like all happy endings, I know an inspiring recovery is not sustainable — there is always an ebb and flow — and that makes me sad because I want a recovery in which I keep getting better and know there’s a guarantee that I will keep inspiring people and bringing tears of joy to their eyes. But that’s not how recoveries work. Happy endings aren’t sustainable, no ending is because, well, it’s the end. I don’t know when my end will come, but this isn’t it, so I must keep moving forward.
Nonetheless it feels like the only way I can keep moving forward is either by trying to relish in short bursts of happiness — a friend visiting, a new book to read — or by just going numb to the world around me. The latter is easier because short bursts of happiness only serve to dull the unhappiness I feel in the moment and temporarily thwart off my long term despair. It’s much easier to just go numb, but as someone who lives to feel things, I can’t last long like that.
Given all that, my plan is to keep moving forward and hope I find more short bursts of happiness, strings of good things come my way, and the bad things stay away.
A few things before you go:
1. Thank you for reading! This is my first post in about a month. I’m glad you’ve stuck around.
2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!
3. If you would like to donate to support this blog I would be equally grateful!
Jamison! I didn’t know you wrote professionally! That’s awesome!
I’m sorry you are at a downward side right now, I hope it turns around.
You are very lucky to have great care. I don’t know what I would do for my clients if I didn’t have the best caregivers, I know I’m not good at it!
Try to keep your chin up. I’ve heard that if you act happy, you can be happy (although I’m not sure that’s actually true).
Hi! Thanks for the encouragement. Happy holidays!
Your thoughts echo my thoughts and no doubt the thoughts of the many who read your blog with interest and empathy. I so ‘get’ how you feel. When I became sick with ME/CFS 15 years ago at age 47, I was SURE I was somehow going to recover fully and be completely healed from whatever ‘this’ was and I was going to inspire people. That was if I lived through it, which I wasn’t so sure I would. But since I had a newfound understanding of severe illness and how awful it must be to be, say; elderly and alone and sick, that once I was well that would be a focus of ministry, so to speak. Well, that didn’t happen. I’m still severely ill. But I have been able to be there for the VERY few friends I have left on this journey as the ones who are active and busy and well have gone by the wayside of their own accord…..sigh…..But the ones left all have severe illness or disability or loneliness and while FB or e-mail is our only contact now, I know they appreciate me and my sympathy and love for them. Case in point, one is Denny, the bass player from my country band in the 80’s, Firecreek. In our 30’s he was amazing and talented. Now….. he’s 70, lives alone with his cat in his single wide 40 year old mobile home, no girlfriend or close family, had 11 caregivers in 3 years, each one worse than the last. He’s confined to a wheelchair and this Friday goes in for surgery #4 (he’s basically a guinea pig for the VA hospital doctors) on his hips because the rods and artificial hips have failed. He’s been a friend and is truly the brother I never had biologically. I realize that even having 1 or 2, or in my case a total of 3 friends that count on me just ‘being there’ for them, when I am able, in whatever capacity I can muster, is important in this world. No one understands your challenges like another who is also suffering daily. I chastise myself for not being grateful for what I do have. But that’s just human nature so we just keep trying.
Hey Stephanie! Argh. Poor guy. Sounds awful. But hopefully he finds some peace. And you as well. Happy holidays!
When I was young, before I got ME/CFS, I thought I would always be able to work my way out of anything that happened to me – it was just a mental attitude, and people were weak who couldn’t do it.
Thirty years later, almost, I know that this is not true. I am not weak. I struggle as hard as any of us. I manage to write a bit of fiction most days, and make progress (though not very steadily lately) on the second book of my trilogy with a CFS main character. I am lucky to be in better shape than you are – but rarely leave the house because that takes the energy I need for writing.
I watch the success of Jennifer Brea’s Unrest and marvel. Hope it does something for the rest of us. I think she’s far more of an extrovert than I am, and has the benefit of all those connections you make at Ivy League colleges, and hasn’t lost all her friends and colleagues yet. I hope she never does, but you know how hard it is to be on the taking end of relationships all the time.
Just keep at it, as best you can, and know that your words are appreciated and read when you do get them out. We’re trying to still be here when the medical breakthroughs come. There can’t be this many of us broken without there being a reason. We’ll have a much easier time being grateful then.
Hi Alicia. Thanks for the encouragement. I hope you can keep your writing going as well. Happy holidays!
Jamison, Thank you again for your thoughtful post. My daughter has battled ME/CFS for 3 years and struggles with maintaining some sense of peace. I wish you well as you share your journey.
Hi Susan. I sure hope she improves. It’s a tough battle. Happy holidays to you both.
Thank you for being so open. The ebb & occasional flow of this condition is beyond frustrating. As I tell my husband how lovely it must be to just get in a car & drive, as he nods exhausted from a long working week. Then I feel horribly mean.
I’m slowly coming out of a 2 month unexplained dip, not helped by a yawn worthy phone debate with my GP practice as why trying to get there would be a bad decision & how it’s been like ‘this’ for well over a decade. Hello! All I can say is, don’t give up. The upward trend will return, maybe not as you would wish, but then again maybe it will. What is that saying, it’s ok to feel rubbish, it’s human, just don’t unpack & stay there.
I’m inspired by you. Wishing you better days & soon.🌸
Ps. I hope my comment didn’t come across as insensitive towards the last sentence. Not always terribly good at expressing myself. I do understand what you mean.
Hey! Not at all. I appreciate your thoughts. And you’re right sometimes after stewing in sadness you just gotta snap out of it. Happy holidays!
No matter how hard you try to “look” happy, your eyes will betray you. It is something that haunts me when I see that deepest kind of sadness in a stranger’s eyes.
While I agree, do not force a smile if you don’t feel it. However, there are studies that show that you can actually trick your brain into feeling happy if you force yourself to smile. Of course, this is not a long term remedy, but something worth exploring now and again.
Yes, you were considered that Pheonix, but no matter what happens, you will be considered a fighter.
Wishing you peace and strength!
Thanks! Fake it till you make, I try to when I can. I appreciate your kind words. Happy holidays!
Loud and clear Jamison .. I hear you .. I empathize… I had just written myself a post it 12/19 4:30 pm and 9pm Do not forget it will pass .. for about a half hour I felt human again and was reminded how easy life is when all isn’t such a struggle only to have a horrible crash this weekend … it is mentally daunting.. keep doing your best .. all we can do.
Heather
Thanks Heather! You too. Happy holidays!
Maybe the point of life for anyone—sick or healthy—isn’t about finding happiness. It’s about finding meaning.
Your blog does a wonderful job finding meaning in illness and abject suffering. You are inspirational, no matter how you feel or what you can do on any given day.
Keep writing, and keep posting!
Hey there! I definitely think that’s part of it. And purpose is happiness for me a lot of the time. Thanks for your sweet words!
I had just been thinking about you and wondering how you were doing. I had a feeling not so good since we hadn’t heard from you. So glad you took time to write but so very sorry you took a downturn. I know how that goes. So many things I would like to do for Christmas but can’t. Just so glad you have a good support system around you. Merry Christmas to you and I hope you will start feeling much better very soon!
Thanks Gloria! Happy holidays!
You need to stop being so hard on yourself Jamison! Feeling guilty for something you have no control over is a wasted emotion and saps what little energy you do have. My counsellor taught me that. Unless there is something you can do or not do to change things then you have to learn to let it go. Once I let go of that guilt life seemed so much easier. That and I got divorced!! Ha ha.
Seriously though, I just wanted to ask, do you take vitamin D supplements to make up for not going out into sunlight? I can’t remember if we ever talked about it. But that could be the cause of your depression. To be honest, I think you are doing remarkably well considering. I don’t know how I would be able to cope if I couldn’t go outside. I know how depressed I get if I don’t leave the house for a week!!
The other thing to consider is that you are being asked to write about your illness so you are constantly being immersed in your illness without any breaks. I used to be part of a lot of fibromyalgia support groups but I had to give them up because they dragged me down. Constantly talking about my illness just made it the ONLY focus of my life and it took over.
So I rediscovered my love for art and 8 years later I am embarking on the final semester and contemplating life as a Fine Art graduate…that’s if I survive the next 5 months! It will be a massive achievement if I do as my fibromyalgia has tested me all the way!
I know writing is your only saviour but just give yourself a break from feeling like you should appreciate things more. You are doing the best you can right now. Heaping guilt on yourself just adds to the stress your body doesn’t need. Letting go was the biggest gift I gave myself. Give yourself a gift.
Regards
Tracy
Hi Tracy! I’ve always been pretty hard on myself but that’s because I want to be the best person I can be. But I do love myself as well. As for vit D I take it every day among many other pills. And my levels are good. Thanks for your concern. Happy holidays!
Jamison,
Do you follow Health Rising.org? They have a wonderful amount of info on this disease and are on top of it all the time. If you don’t already, please sign up for their emails. If anything breaks they know about it. Cort Johnson also has this and is amazing in his talent for breaking through all the scientific lingo and other BS and explaining all that is going on. Please check it out if you can soon.
Hi Gloria. Yes! Me and Cort are buddies. I actually wrote a guest post for him before starting this blog but that was a few years ago. He’s awesome.
Happiness is overrated. Ya bounce around like a tennis ball. Finding calm and some piece of mind that today is an okay day, works for me. With my continued case of shingles, I had to rethink everything. When Will I be able to type more than a few sentences? When will I be able to hold a book? Damn. I can still walk okay, but I do have worse brain holes. SO composing anything is hard cause I can’t spell and my fingers don’t work very well with my eyes and brain. SO for now, I will cradle my hurt self, stop thinking about what I wish I could do and just BE. Will this go away? No predictions on that. But Jamison, I am 68 and have had decades more well time and sick time than you, so Beware of good advice and things that go bump in the night.
Hey Pat. Oh damn. I’m so sorry you have shingles. Thanks for your wisdom. Happy holidays!
Hi Jamison,I think of you very often and hold you in my prayers vividly..I miss your face and hugs as well.I purchased a sweatshirt to support you.Merry Christmas Jamison to you and your family and GOD BLESS YOU.💚❤💚❤
Hey Thanks! Very sweet of you. Happy holidays!!
i really hope this downturn in your health does not last long and you can get back to sitting up again. All your feelings are understandable as i think it is really hard to muster happiness and gratitude especially when you make some small gains and then crash again. A lot of people who tout positive psychology and gratitude is the answer really have no idea just how bad it can get. ME/CFS and other chronic severe illnesses are unimagiable to normal functioning people. We are running a shitty marathon everday which we dont remember signing up for. I really hope that dream you had comes true for you eventually.
Thanks Lisa! I appreciate your kind words so much! Happy holidays!
Hey Jamison–Thanks, as always, for being vulnerable here. I’ve been wondering how you’re doing.
I’ve thought a lot about happiness over the years as well as all the stuff you mentioned. It’s interesting how different circumstances can cause us to have similar thoughts. I do consider myself an optimist–but only because of the dark times I’ve had. It’s odd, but–for me–the Universe always seems to show up for me when I’m at my darkest moments. But maybe it’s because I look for those things or maybe it’s because the smallest things can be my life raft. I don’t know. I’m a friendly, seemingly happy person–I guess–but I have a wickedly dark sense of humor. My ex used to say I was this cross between Eeyore and Tigger with some Calvin & Hobbes thrown in. It fits. I have a deep fascination with darkness and depth. I love melancholy music and I’m a champion moper. But, when it counts, I survive and bounce back. But there is, I think, often a sadness to me that I can’t shake.
The thing is–surviving difficult stuff does infuse your life with some degree of sadness because you’ve lost something. A big something. It’s normal to grieve. I’d be worried about you if you weren’t sad. Fighting grief, as I know all too well, is much worse. When I was my Mama’s caregiver, I learned something really important that’s related to this. I tried so hard to show my Mama how loved she was–to never make any mistakes in her care–to never be upset in front of her–to never be overwhelmed…to not grieve or be vulnerable in any way. But of course, being utterly human, I failed. All the time. I beat myself up for being angry and sad and feeling cheated. And then I beat myself up for beating myself up. The lesson here that has helped me so much since then is that we’re all doing the best we can. When you’re able to be grateful, you will be. And not being joyful or grateful just means you’re human. You’ll do what you’re capable of doing when you’re capable of it. It just means you’re processing it. Sometimes, it takes time to be able to be the person you want to be. You’ve suffered a big loss.
For me, it’s been an exercise in patience–which I’m awful at. But with time, I’ve been overcome by joy and gratitude–and those moments keep me going. I never see them coming. These days, I see joy and sadness in my face. Both exist because that’s who I am. Who I will likely always be. And I actually sort of love that.
Hey Friend. Thanks for your words. You’re right it really takes time and patience. I’m working on those things. Hope you have happy holidays!
you can find it!!
Thanks!
I’m just catching up on your posts. I’m glad I read this one today. I got a cold then stomach bug and now another cold. It sets me back a lot in my recovery and the pain in my legs has returned and is pretty bad. I’ve been struggling with the same sadness that you speak of. The only things that has helped me is trying not to dwell on sadness and sometimes it’s a destraction like a new game or tv show. I also have pets and my dogs always cheer me up a little. If you do find other things or mental stradidgy that work for you please share with us. I’m always trying to find new paths to happiness.
Will do! I’m glad your pets can provide some comfort. Thanks for reading!
When I first saw the heading, I was thinking the other way round. Till I have to read to the end.
Am the type who reads very inspiring story, since it’s talking about HAPPINESS I have to read and make my own view about it.
For me am the type who engaged in such also. When I saw the post I didn’t waste my time in reading it instead I read it like a 5years old.
You write and explaination are quite OK.
Your beautiful words just made my day. Thank you so much for adding such magical drop of words in my jar of motivation and your views on HAPPINESS. I feel blessed by your writing and posting right now.
I found delight love in what you just said in your post.
Again such a beautiful write up on your blog.
Keep the vibes on and grab a stick of HAPPINESS
#PATRICKSTORIES
Peace ✌and Love ❤
Thanks Mr/Mrs for accepting and following my blog.
I’m available to read your post at my convenient time.
You have such an interesting topic I will love to read in
your blog.
I still remain the simple blogger…..
#PATRICKSTORIES
Peace ✌and Love ❤