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Chronic Snarkopolist: Do We Live a Meaningful Life or Make Meaning? Playing the Cards We are Dealt
A brilliant woman tonight prompted me to consider the difference between living a meaningful life versus finding meaning in my life even through suffering and illness. It is something for me to ponder this.
For her- she said, “I find no meaning in watching a child suffer.” And I responded, “I don’t think WE are supposed to find meaning in OTHER PEOPLE’S suffering. I think we are to find it in our own if we can.” We began a dialogue about the difference between living a meaningful life versus finding meaning.
I wonder – truly wonder – if we cannot do both. Sometimes I feel like a failure when feel I’m not finding enough meaning. When everything is sucking and the tidal wave is crashing overhead. Times like that I just curl up and shake my fist at the notion that there can be meaning in illness. I do however feel GRATEFUL every day of my life for more things than I say aloud.
I believe it is HARMFUL to push the notion of “finding gratitude or meaning” on other people. It puts pressure on people that they should suddenly start making meaning out of horrific suffering when they are simply trying to survive. My goodness – surviving sometimes means numbing yourself and holding on to the log and putting one foot in front of the other and just being as kind as you can and doing no harm and breathing in and out and in and out. And sometimes that is all you can do for a while. Fuck meaning – sometimes surviving is about counting down between the next wave of pain and nausea. I’ve learned sometimes about riding the waves – and sometimes I’m better at it than at others.
Sometimes we have learned biofeedback or navigation and meditation and can find pain without suffering. Or we shove the noise down. Or it becomes a louse fucking white noise static. Or we can just walk through it like walking on hot coals. If you keep walking and don’t put your feet down on hot coals you can keep going. And there is not time for “making meaning” during those times, but you can’t sit around and judge it – JUST KEEP GOING. KEEP WALKING THROUGH THE HEAT- GO- JUST GET THROUGH ILLNESS!!! “We’ll make meaning later you tell yourself – just survive, just get through it.”
I have read many authors who discuss finding gifts and meanings. It is NOT MY JOB to determine whom and when and where or how people find theirs or do not. I myself don’t feel my illness is a gift. I find it damaging to use such language as an expectation that others do – but FINE to use it as a personal lived experience. Lived experiences are lovely- but people should never tap their toes waiting for the glowing patient reviews from OTHERS. What is true for me may not be true for anyone else. If I am always cranky or always happy may not be true for anyone else. It is never fair for expectations to cross over. Though I will say that most of us on DT have found an wonderful healing community reaching out and sharing. And for this it is important to keep reaching out and reaching back. THIS is what I WANT and NEED in my life.
I believe in finding the gift in the hit the way in martial arts if you take a blow and it knocks the wind out of you your master will say, “what is the gift in this hit?” And you will suck air for a second till you catch your breath again. And then you will stand up. And you will rethink and realize that you did not have the right pose or the right posture or you were not standing wide enough. There are many such gifts in many “hits” in life. But again – these are not “offerings” so much as sometimes learning to say, “what is the gift in illness?” The “gift” might be unseen right now. I am finding many friends, colleagues, research interests. I am able to act as a patient advocate, I can seek out great medical care and call bullshit on bad care BECAUSE I have navigated the system so long. These are not “offerings” but gifts in the hit.
My family who have reached out to me who have taken care of my needs or difficulties, my friends who have driven me to appointments or helped with food or laundry, my sweeties who used to come and snuggle with me or carry in my groceries in Atlanta– THOSE PEOPLE are my fucking heroes. Those are my fucking gifts in this hit. Those are the people I feel are helping me see beauty in the sucking scum. Those are where I make meaning.
It is easy to count up the nameless immeasurable losses – so I won’t. But trust me when I say- it MATTERS to me when people are kind to me. I NOTICE THE KINDNESS as though it is under a microscope because kindness is amplified when you’re sick. And such times make MEANING FOR ME.
So yes – I suppose I am both living a meaningful life AND finding meaning (after the fact in most cases). I do NOT expect a sick person (especially newly diagnosed) – to run off to the stage and start being funny. Nor do I expect them to start finding ways to be grateful or make life count. But the fact of the matter is – NONE OF US GETS OFF HERE ALIVE.
Everyone’s life is limited. If we are lucky we die peacefully and happily in our sleep surrounded by our great grandchildren. But most of us will face illness and untold suffering – and in that untold suffering most of us will learn to play the cards we are dealt.
I’m so glad I had to reflect on this. I’m still pondering. Maybe as I go through life more and see more and find walk through more fire- I will find even MORE meaning and ways to live a meaningful life.
What do you think? Am I full of shit? Do you live a meaningful life or is the meaning already planned? Is it worth it? Or do you just put one foot in front of the other and walk day by day? Or all of the above? Is it sometimes easier to do one than the other? The wise woman I spoke with found no meaning in illness but DID think you can live a meaningful life – so there are many perspectives. What do you think? Tell me! I must know!
I’ll be back same time next week! Kiss kiss!
Melissa
Tags: finding support for chronic illness, knowing yourself before illness, lessons from illness, living with chronic conditions, managing chronic autoimmune conditions, sickness and health, sickness as a gift, was your disease a gift, what did you learn from your disease
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22 Responses to “Chronic Snarkopolist: Do We Live a Meaningful Life or Make Meaning? Playing the Cards We are Dealt”
Leave a Reply to yallolorry
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Hi Melissa,
No, I don’t think you’re full of shit at all. I’ve been managing 3 auto-immune diseases for 10 years now and oh how I remember so well all the comments from others of “find the meaning” in your suffering. It has taken me 6 years to be able to take 13 steps after my stroke, dealing with post-thyroidectomy/cancer and incurable blood disease. For the longest time I spent many hours wondering what the meaning in all this was and how could I ever live a meaningful life once again like the one I was living that was so rudely stripped from my grasp. I have found that there are days, weeks that I must just take 1 step at a time while walking through the fire and there are those days when I see some glimpse of hope that I might, just might be able to live a meaningful life once again. That is my wish to all my friends here at DT.
Lisa
Thanks so much for your lovely comment Lisa!!! Yes! It is always my wish for my friends- that we all learn to live meaningful lives. For sure.
I’m glad you wrote in. Lots to think about. Lots to ponder!!!
much love!!
xo
Melissa
The expectation that one will find “meaning” in illness is too closely tied to the New Age bullshit about “creating your own reality”. There’s a nasty little dig in there about it being your fault you are sick in the first place, and the lessons you are to learn from it are to not be such an asshole anymore. Then some magical form of “healing” comes as a gift from the cosmos, although the way “healing” is used usually doesn’t have much to do with getting well- better lab results, tumors shrinking, etc., it’s just the expectation that you now have a better relationship with the ineffable.
I don’t see illness, mine or yours, as an opportunity to find meaning in life. It’s just another crock of shit to be dealt with. After living with a chronic pain problem for 20+ years, I figured out that I could stay home and feel awful or go on with my life and feel awful, and that the second option is certainly more entertaining and productive. It’s not about finding any great meaning; it’s about keeping a job to have insurance to pay the medical bills. It’s about meeting my kids’ needs, whether I feel like it or not. It’s about realizing that the parade marches on whether you’re there or not.
The ones who think you ought to find “meaning” in being so awful sick are scared that they may someday walk in your shoes. They want your reassurance that there is indeed great beauty and joy in being sick. They want to know that you are making the most out of this suffering you have been given. Then they don’t have to feel guilty for not helping you with the groceries.
Thanks for your comment GS!
Yes- I’m picking up what your putting down for sure. Yet- I wrote, I don’t think OTHERS get to tell me what meaning to find… I don’t get to tell YOU to find meaning— but then should YOU get to tell ME I cannot find meaning? We are all in this together.
Life with illness sucks. It does. We’re all doing our very best to life it with fullness and carry on- provide for our families etc. I’m hearing you… but really I am learning that *I* am living a meaningful life or that I CAN find meaning occasionally. And sometimes I struggle and mourn and give in and feel awful. It is a mixed bag like anyones life. Truly.
I’m challenging you with these words. And I’m grateful that you challenge me with yours! I love to think and I love the perspectives everyone gives us!!!
Lots of loves!
x
Melissa
Melissa, I’m certainly not saying that you or anyone else can’t live a meaningful life. Quite the opposite- I feel terribly sorry for anyone who doesn’t seek meaning.
I just object to the expectation that we ought to find meaning in illness. It may sometimes be the catalyst for someone who has never thought about anything deeper than what’s on sale at the mall to take stock of things, especially if their life is threatened. As I (and others) have said, though, there’s a nasty little expectation out there that illness or other misfortune will make you a better person.
Your analogy of “the gift in the hit”, for me, works better when there is something we could have done differently surrounding the hit. With a few exceptions, the hit of illness couldn’t have been avoided. For me, there is no “gift”, no lesson to keep this from happening again, or to keep it from ending differently.
The tragedy is when we let illness destroy or lesson the meaning our lives already have.
I have already said I find no “gift” in illness – there is no joy in it. I find no great wonder to it.
My expression, “gift in the hit” was a martial arts term specific to mean – when you’re down – what can you find in the being down that you can use from the downness… more like a survivor mode- picking up – learn from it – and move on. I personally have learned to be a good patient, to advocate, to suck up pain better, to be nice to receptionists, and that I’m sometimes really afraid, and that my worst days have an end.
I’m NOT calling these, “gifts” — I’m saying from being down – those are what I’ve found in the mud.
Im pretty sure we’re on the same page. I think you don’t like my terminology. And that’s cool.
Thanks for commenting!!! xoxo
Melissa
“It puts pressure on people that they should suddenly start making meaning out of horrific suffering when they are simply trying to survive.”
I guess my thought on that would be that “simply trying to survive” is meaningful in itself. And I think often we don’t give ourselves enough credit for when we feel like crap and we’re sick physically and mentally and no one understands what we’re going through – and yet, we do keep trying to survive.
Is that not meaningful? Does that not say something about the human spirit? About us? About the human will to live? And isn’t this a huge testimony about our courage and strength? And if we’re fortunate enough to have loved ones who keep pulling us through the hard times, isn’t there meaning there about love and sacrifice?
So I don’t think we need so much to “look” for meaning, it’s already there in our very existence and that we continue to wake up each morning without having ended it the night before with a bullet.
Now, do I think this type of “meaning” is something that is appreciated by those who haven’t experienced our pain and our struggle? No, I don’t. And I don’t think they can to be honest. I think only if you’ve lived it can you truly understand that if you’re walking through hell, the most meaningful thing you can do is just keep on walking…
Wow Cindi-
I had to read your post a few times because every time I read it little shivers ran through me. Yes!!! Sometimes just the way we live IS meaning… and we DON’T give ourselves enough credit.. and we DON’T pat ourselves on the back when we get up and deal with our lives and make shit happen.
THANK YOU SO MUCH for this fabulous comment. You are a brilliant and beautiful writer.
xoxo
Melissa
Katie here… Melissa, thank you for writing this. I wanted to chime in and add my two cents, because I always thought I was in the minority re: finding meaning in my disease. I see that I am not. I learned nothing. I am no wiser. No stronger. No better. I didn’t need to get sick to appreciate my family, my friends or my LIFE. Getting sick sucked the life out of me. I lost time, and a laundry list of things that are just to painful to talk about.
You are not full of shit, not in the slightest. I love the concept that woman shared with you. In fact, I want to ruminate about it.
I think our families and friends suffer CRUELLY with this disease, too. That is the great divide. Not for everyone, but for some. In my opinion, seeing what our families endure is as important as what we endure. I’ve experienced this firsthand. I KNOW WHAT AN indelible imprint this disease can leave on our loved ones.
They lose time.
They see us consumed by a disease they can’t control
If we have psychiatric issues, which we do with autoimmune thyroid disease, they suffer the consequences of our many personalities.
Nothing is black and white, IMO. This disease business is chock-a-block with shades of grey.
Thanks for writing this. Thanks to everyone for sharing their two cents.
BRAVO.
Katie
Hello Katie-
Thanks for writing in with your thoughts. I always love to hear from you. I do want to say- you ARE wiser. Wisdom comes when we suffer and when we experience joy deeply. We cannot do EITHER without gaining from it… and WE ALL HERE have gained from it. All of us are MUCH WISER… Hell – we are all due our own personal fucking mountain top and zen floating space.
And yes– I’m so glad we are able to acknowledge the space for our families and friends and how it touches them… the laundry list of things “that are too painful to talk about.” [THIS SPACE IS FOR THE THINGS THAT GO UNSPOKEN………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………..].
I often think how good it is we have this space here to bear witness to each other- and what we are going through and what we have gone through… our families do not have that… GIANT HUGS.
xoxo
Melissa
Melissa,
What a wonderfully insightful and incisive piece! Yes, you can do both. I would venture to say that all of us on the DT board try to live meaningful lives. After all, here we are sharing our experiences in an effort to ease another’s journey through this illness. I’m sure that offline, we exhibit the same kind, caring attitude toward others.
I have found that people who talk about “finding the gift in your illness” usually are trying to blame the patient. It serves to mentally distance them from the possibility that it (or something similar) will ever happen to them, and imparts a warm, smug feeling. That’s why I never use those terms to describe the “gifts in the hit” I’ve gotten from Hashi’s (love that phrase–can I steal that?). There’s nothing to be ashamed of in just putting your head down, slogging through and surviving. [In Spanish, the word for survive is sobrevivir, which literally translates to “live over.” I think that nicely describes what we do: live over all the things we have to deal with.] It’s when you come out on the other side, or come to a place where you can catch a break, that you can start to process, analyze and interpret what you’ve endured. Survive now, find meaning later is what we instinctively do.
Illness is not inherently meaningful. It is the changes wrought in ourselves–our perspectives and feelings–by our illness that help us find meaning. Trials tend to bring out our best qualities, but we don’t understand it until we’ve been in it for a while. Am I a better person now? Yes. Would I have chosen to go through what I have with Hashi’s? Are you serious?! The sobering thing is, though, that I could have had to deal with something worse, like my sister (a breast cancer survivor disabled as a result of her treatment). I know there are other thyroid patients who are dealing with multiple serious health issues, while I’m only dealing with one. I may feel like I’ve been through hell, but people who are worse off may think “that’s all?” They’re right, and I’m okay with that.
Hey Janel! Thanks so much for the lovely comments!!! I try so hard not to compare illnesses and health challenges. To suffer is to suffer. And you are right–pain is pain.
I myself seek “the gift in the hit”- but I would NEVER allow anyone else to tell me to find it. It is one thing for us to go on our personal journey– it is another for someone to tell us to find it. Again – illness and pain and suffering is so individual- yet it touches everything in our lives. Our family, our friends, our lives, our jobs, our relationships– EVERYTHING is touched by our health. I do agree that “blaming” happens too easily– NOT TO BE STOOD FOR.
And you are right- would I go through it again? NEVER – NOT IN A THOUSAND YEARS. Am I better for all my experiences and the lovely people I have met – of course. But that is why we call it “life experience.”
Thanks so much for your lovely words. Fab comment and insight!!!
x
Melissa
I didn’t understand this post when I first started reading it but I kind of loved it. Thank you.
I didn’t get what you meant by “meaning”! I think maybe we don’t use the word in the same way in the UK.
I’ll say a bit about what’s come up for me from reading your words: I did a course a couple of years ago where we were told (and it made sense to me) that human beings are “meaning making machines” – in the sense that our thinking can tend to be automatic and we tend (in our minds) to make everything that happens mean something. We constantly distort reality by attributing meaning to everything that occurs. It’s just the way our human being brains work, naturally. For some reason we want stuff to “mean” something. We have this built in need for there to be “meaning” around the things that happen in our lives. Maybe none of it means anything at all. It’s just what’s happening. However, I do believe that we can choose is how we respond based on what’s important to us (obviously within the limitations of what options are available to us at any given time)
I am ill. Sometimes, my distorted mind makes that mean that I am a failure, or that I will end up in the gutter because I won’t be able to support myself, or that my friends will get bored with me because I haven’t the energy to do all the fun things we used to do together. Sometimes in my bleakest times, I make it mean that I’d be better off dead, because I can’t live the life I used to have, or the life I envisaged having in the future and I feel so compromised.
But mostly, now I seem somehow to have become so much wiser than I used to be(and maybe the illness has played it’s part in that), I am able to recognise that it doesnt mean anything, it’s just something that’s happened and I just need to deal with it as best I can and seek fulfilment where I can.
And like Janel I’m acutely aware that lots of other people are much worse off than me. Like Katie I’m able sometimes to consider the impact on the people who are close to me and have compassion for them as well as for myself and at the end of the day, this is my life, it IS a gift and it’s fascinating and every day is new and I am increasingly in contact with incredible people like DT members.
Thank you for this wonderful platform for sharing. Sorry if that was a terrible ramble. I’ve got terrible insomnia right now!
Hello yallolorry,
Thanks so much for the lovely comment!! yes! Humans are meaning-making-machines. ha! That made me laugh. Ahh– This is some powerful insight!! These lines here: “I am able to recognise that it doesnt mean anything, it’s just something that’s happened and I just need to deal with it as best I can and seek fulfilment where I can.” It is big stuff to sometimes realize that maybe we all just need to do our best.
I LOVE your words. Please come and ramble all over me ANYTIME. This is brilliant stuff. I need it.
xoxo
Melissa
aww Shucks Melissa. thanks for getting what I was trying to say and for being so welcoming and encouraging, more rambles will follow in due course, rest assured!! It’s so nice here, big love to everyone. 🙂
Finding familiar in ourselves in hard enough, and for others who knew us one way and now, what do they see?
My own daughter refers to these changes in me as “tricks” I am trying to play with her~
It’s scarey to us and to them.
I have learned some things, but I’ve lost more.
I am forever different. Different is hard and familar is peaceful.
Reflecting back as I did, seeing myself before ,looking at me, who was looking in the water, as I now appear burring and I still can’t see who I am anymore.
Our hopes to find value is all we have left. We must see differently. Our joy depending on believing we can be “more”, but in a different way.
Can anyone find their way back? If you’ve lost your arm, can you sew it back on? No
So.
All we are is new.
We must be able to find this new “meaning”. It is something people do. We can’t help ourselves, how can we deny ourselves?
It has to be alright to just be.
Let it be.
Linny
Hello Linny- you are forever my guru!!
If you’ve lost your arm can you sew it in?No! Those are some powerful words. No- you cannot sew your arm on — but your inside will learn and grow and reflect. And you can be Linny without an arm. And I will be Melissa without an arm. And we would MOURN the lost arm. And we would learn who we were without that arm. We would be DIFFERENT… All we are is NEW. This is big stuff.
I love when you comment. Sometimes I have to chew on it for a bit– but I do love to think these things through and really reflect on it!
much love you gorgeous thing.
xoxo
Melissa
Wah!
“And you can be Linny without an arm. And I will be Melissa without an arm. And we would MOURN the lost arm. And we would learn who we were without that arm. We would be DIFFERENT… All we are is NEW. This is big stuff.”
beautiful, heartbreaking sentiment, I identify, I’m learning to be Lorraine without an arm and I DON’T LIKE IT!!!
But then it brings me here and to other places I never expected to find myself and it is new and it is raw and honestly, for me (I can only speak for myself), my “gift in the hit” (personally I quite like the terminology, it works for me though obviously not for everyone), is truly: that life now sparkles like it never did: because I’m somehow more aware and more grateful for it than I ever was when I could (metaphorically speaking) wave my two arms around as much as I liked (which was often, above my head, on many dancefloors in some ridiculous outfit whenever I got the chance, which was a whole lot of fun, for what it’s worth, but those days are gone. shame)
I probably can’t explain it very well but I feel I’ve been wrenched off the path I was on and started out on something deeper as a result of this illness. I’m sure that makes me sound like a sad, addled old hippy, but that’s my experience.
Meditation and personal development work have helped me a lot.
Thanks so much to everyone on this thread for such fascinating discussion and shares, beautifully expressed.
Melissa , may I add something else to your wonderful post?
I would like to get this off my chest.
these individuals, who, suggest that somehow people who suffer illness or what~ever the struggle would be, is somehow relating to a type of “punishment”, are out of their “fricken ~heads”!
Ok, people like that, are why a Hitler could do what he did.
This is the most dangerous type of people.
It is said, cause I read it somewhere, that only 10% of the population of the whole wide world would classify as being a “truly evil type”, so if this credulously idea could be possibly true, who, my friend would point the finger?
Anyone with balls enough to make a connection of this sort should be laughed at and dismissed as a lunatic, nothing more, nothing less……oh and tell them to stopping carrying the signs that tell us the world will end tomorrow.
This is a nerve with me……thanks for letting me vent.
Lovingly protective of innocence, Linny
Main Entry: gift
Part of Speech: noun
Definition: talent, aptitude
Synonyms: ability, accomplishment, acquirement, aptness, attainment, attribute, bent, capability, capacity, endowment, faculty, flair, forte, genius, head*, instinct, knack, leaning, nose*, numen, power, propensity, set, specialty, turn
Words are powerful.
Sometimes we forget that words can mean many things.
If we would fall over a cliff and hurt ourselves badly but someone threw us a rope…..is that not a gift?
It doesn’t change the fact we’ve been hurt.
It is power. It is a way out of our misfortune.
We have gifts in abundance! Look around you carefully, it doesn’t always have a bow.
In our trouble we are blind. We get stuck, we think…..stubbornly.
Think what Helen Keller learned were her gifts. Have you ever heard of a more gifted person?
What about Anne Frank? Do you remember that she still thought life was good! How long did she live in one room?
Wasn’t there a gift here?
There are stages of grief. We all go thru them. Sometimes we get stuck in one of them. Sometimes we jump from one to the other and back again. We have not failed. We have begun to learn something. We may not except what we learn, or like it much. But it is.
It will be a gift when we can be brave enough to accept who we are and who we have become.
Lovingly Linny {P.S. we can still dance with one arm}
I AM LOVING THIS DISCUSSION SO MUCH. Everyone is sharing such wonderful and supportive ideas and tips, among other things.
I am of the mindset that we each have our own process. We do find out way, but it’s on our clock, not others clocks. I believe that part of healing is the expression of anger, sadness, happiness, and every other emotion under the sun.
Dear Thyroid embraces all of those emotions. We want our community TO HEAL, period. We want you to express your feelings as honestly as you wish.
Melly Mel
I’m just enjoying reading this.
I used to look for ther meaning in everything or a purpose to life and found there are no real answers. We all have to find our own way and what works best for us as individuals. I tend now not to over analyse anything if I find a solution or an answer then that is my gift if not then no big deal I’m fucking floored.
Melissa you have a wonderful gift not inthe sense of the hit and I have been hit many a time when I have not been ready for that blow and I learned from it you have the gioft of bringing out the best in people you have the gift of digging deeper than a dentist doing a root canla to save that tooth. You have that “GIFT” do we play with the hand we are dealt or like me do we use that fucking Joker as an ace card and come up trumps.
Katie lovely to see you get involved miss you girl.
Lollyxoxox