Having a crisis of meaning

Aerose91

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Chronic illness, this one in particular, strips away your identity as a human. We all had things we were known for, things that formed our identities to the world around us. I'm not saying these were always the perfect pathways but we added value to the world, nonetheless.
I was always a protector. I cared tremendously for my friends and loved ones and they all knew that if I was around everyone was getting home safely. I was a highly active person, personal trainer and former fighter and this became simply who i was. I'm not saying there weren't other things in life I wanted to accomplish- there were- but I had my roll in society and with my loved ones. I added to situations instead of subtracting from them. I contributed more than i took back and that fulfilled me. I was planning on building more on that so i could always be a valuble part of something greater than me.

My friends are long gone now. For years I've been taking more resources than I give back. Once my physical and mental abilities dwindled I could no longer serve my purpose and my social group faded.

I always thrived- THRIVED on my community and being a valuable, contributing member in my own way. I'm of no value to society or any community now. I understand there can be small movements toward contributing in some ways but anything im able to do is unfulfilling to me. I miss being the guy people could rely on and hanging off of a rock face with one hand. I miss FEELING like i could overcome. Now I feel my days are largely spent bumbling around investing myself in finding a way out of this prison. For a few years there was some fulfillment in the research and the next health experiment but that motivation has faded in time. At some point the reality and perspective of all this has to sink in and i think it's starting to.

Thoughts?
 

Shoshana

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It's all so true and well said,
and makes for a very difficult personal journey, and very challenging. Even feeling defeating at times.

Yet, and in no way do I claim this "makes up" for it, or is "worth it" (some may think so but for myself, I don't come from that place)
As I was saying,
Yet, you (and I and we ill people) are of a much different type of value now, and perhaps even much lesser value, and yes, not the value that we did treasure and value the most or more;

Yet, we still do have value. You do. I do. We do.

Continue when able, intermittently if need be, to notice and look for the ways you still contribute to some greater good.
Every post on this and other forums, could be the drop in the water that widens, to reach another human who was in search of the word they needed that day.

If you speak or send, any other communications to anyone else, in any way in addition to a forum, then those chosen actions could have a positive impact on someone else. IN your own unique way. As you have done here.

Small things matter. We have seen the effects on ourselves in our own life, when we received them from another, so ours quite possibly and likely do as well.


I do find it extremely difficult, myself though too, dealing long-term with as extreme limitations as i do, to maintain or to revisit, redefinitions of value and worth.

I comprehend everything you wrote. The new "value" is not fulfilling for you. You miss the previous ones.

Plus, even if you replaced them, or evolved toward other values of yourself, it would not be to these presently available ones, that seem so meager.

I struggle with it, myself. Thanks for expressing it so well. It helps me to read yours.

Perhaps some feedback given here, by me and by others, might have some value to you, also.

I myself would also like to have more value, but i offer to you this writing, of mine, and my hope that it gives me a bit of value, today. And reminds you of yours.

And if it doesn't, then perhaps something else i write or do today, will bolster someone else, in some way I cannot even know from here where I am propped, or will make a tiny positive ripple effect, in something larger than the world i can see, from my bed, in my room.
 

Shoshana

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It takes a while to go through all the stages of grief (of your old self and old life) and trauma to get to a semblance of acceptance.
Yes, I agree, it surely does,
and then, later, it seems like at numerous points, the bottom falls out again, and one needs to go thru parts of the process again, or a new process, to someplace, I know not where.
 
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I always thrived- THRIVED on my community and being a valuable, contributing member in my own way. I'm of no value to society or any community now.
Feel similarly here. For me, I need to accept that I DID SO MUCH ALREADY. Instead of feeling so disappointed that most everything I thought I would "do" and "be"...here in this stage in my life, is NOT happening. So I studied birds, and can hardly lift the binoculars. :yuck::xeyes::pem::xpem:

When I occassionally get very down, I think things like- animals should not have to die, so that I can eat another meal.

Then I do invariably pull out of that low spot...and feel a bit better.:thumbsup:

Virtually every outside interest I had has been set aside. None of that is feasible at the present time. Perhaps this will change, but I am playing the hand I've been dealt, that I"m currently holding.

I swore I would help the Red Cross, as they helped me during a recent calamity. The reality is- I'd be unable to even fill out postcards for two hours, as I'll make cognitive mistakes. My throat prevents me from talking very long. I cannot pour soup, all that standing.

Flailing about it has done me no good.

But I cried yesterday, just before the field trip I did in fact end up going on, but should not have. I want to be part of life, and have been dealt this mess, which prevents me from participating in so MANY aspects of life. There is often this demand that I DECIDE if I can or cannot do X, Y, Z. I am just so sick of this condition.

Like the impossibility of me participating in the Christening of my Grandaughter. Apparently thats hours of preparation, an event, and then a party with 100's of people. I had wanted to make a special dress, but cannot cognitively fix my own sewing machine. And can hardly see to thread the needle. And am puzzled by the pattern.

So I"m being asked to accept my own incompetence. After being highly competent.

Let it go. Be ok with- being either not a part, or on the side, somehow set aside.
 

Aerose91

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Thanks so much for your guys' input.

@Shoshana your words have tremendous value to me, I hope you know that. I hate hearing that you and others feel the same but those are the people who it's best to hear from. I take your words woth great admiration.

I, too, have had periods of time where I'm better and then it loops back again, maybe a year or two later. But that means it's not processed or gone. I think because i still have hope, hope that i may be free of this one day but then comes the question- what then? I almost feel like i should start another thread on that topic- if you were magically better tomorrow what would you do? That's a hard question considering how long I/we have been separated from the normal paces of life and society.
 
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I wish I had the mental energy to compose a thoughtful reply to the original poster, but all I can say is: YES.

I think many of us feel similarly. I know that I do.

Continue when able, intermittently if need be, to notice and look for the ways you still contribute to some greater good.
Every post on this and other forums, could be the drop in the water that widens, to reach another human who was in search of the word they needed that day.
This is so true. Although it's not at all the same as before, we don't need to hang off a cliff to help others.

I almost feel like i should start another thread on that topic- if you were magically better tomorrow what would you do?
This would be an excellent thread--I hope you start it.
 
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I resonate very much with the losses here, as I share some of them, and I fear very much that I am soon going to lose what involvement with the world I have been able to achieve in the last few years. When my life was very narrow and I was housebound, it felt like a living death, but I began to realize that if I let that dominate my reality I would sink into despair and suicidality. So I learned to stop pining for the "I want my life back" dream and concentrated on the "new normal". I gave up hope of ever being free of this disease. I learned to love and appreciate other, less active things. I learned to find joy. Ironically, I didn't know what joy was before becoming ill.

One powerful tool towards this end is deliberate gratitude. When I feel low and I have my wits about me and haven't been swept out to sea on the despair tide, I think about things I'm grateful for. Right now, I'm grateful that I can write this, even though it is much harder to do than in less ill days. I'm grateful I can see, even though half the time my eyes go blurry for some inexplicable reason. I'm grateful that I have a home (even though its small and not owned), and that I have myriad entertainment here (I have levels based on how well my brain is doing at the time).

Also, I have my cats who have taught me the most about joy. I watch them and it takes so very little for them to be happy and content and I think to myself, "I need to be like that". There is so much of the world to marvel at. Sitting outside and feeling the breeze. Looking at the stars at night and letting my sense of wonder permeate me and contemplate what worlds I might be looking at right now. Watching bees in their busy doings. These things are precious.

This illness has in many ways been a gift to me to enable me to perceive the world deeper, to go within and find that place inside where the light is and draw on it. I am HUMAN and I am of value simply because I am alive. My value is not in what job I do, or what I can do for someone else. To hell with society's rules and values. Those are broken. I can find though this illness what really really matters. It has made me discover my worth anew and frankly it is healing my soul.
 

taniaaust1

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I always thrived- THRIVED on my community and being a valuable, contributing member in my own way. I'm of no value to society or any community now

Thoughts?
That is hard and I really feel it too and that is why I try to help others here.

Before I got ill I was making the newspaper at times for my good deeds, I'd even wondered if I would one day end up citizen of the year in our council electorate (not something I was aiming for but the amount of I was doing for the community was on par with some who had got that title). I was a volunteer for the local ambulance service, helping with protecting wildlife and helping in surveys of koalas, I volunteered at the school, I volunteered in tree planting, I was volunteer of a group who was teaching adult immigrants to read English, I helped our fire service at times etc etc.

It was very sad getting sick and having to give up all the things I did and it's only worst as I now have people who do not know me and my past judging me to be a bad person cause I'm struggling so much and are sick
 
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Hi, @Aerose91 -

Thank you for starting this thread, and thank you to all who have contributed their thoughts thus far.

Even though I have had ME/CFS for 5 years, I feel like I am still in all sorts of limbo (physical, mental, emotional, spiritual, professional, financial -- you name it), and I am not really fit to offer advice on anything that isn't strictly medical.

However, I thought I would share something I read just last night, which really spoke to me.

The person who wrote these wise words is someone with severe, progressive MS.

"In the process of grappling with the fact that I had a debilitating illness for the rest of my life, I realized that my only hope was to give up that life that had been, in order to make room for the life that is. I call it 'my choiceless choice.' Making that choice, over and over again -- to accept what is, and to release what was -- has become the major focusing agent for my spiritual work."

Just typing up this quote to share with you, has me in tears, because I know that this is what I need to do in order to find meaning in my current, so-called "life."

I need to (finally) release what was, in order to make room for a new, different kind of life than the one I had before.

Easy to state, hard to do. My sorrow over what was, or what could have been, is vast.

I hope the quote I shared may be helpful to you or others on PR.

Zebra
 

sb4

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@Aerose91 Yeah that's rough, sounds like you have been going through a very hard time. Although I have lost contact with all my friends I am lucky that I still have my brother who visits me once a week and my parents who allow me to stay in their house.

It can be real tough to watch all your peers go forwards and get on with there lives as time stays more or less still for you however I think I have to agree with a lot of what is said on this thread; you have to give up on the old life and refocus your energies on your new situation. All you can ever do is play the hand you are dealt in the best way you can, even if it is a shitty hand.

I too wander what I would do if I got better. I am not sure but it would be a brand new start and I am sure I can make some positive contributions whether I get better at 30 or 60 years old; and I think the same applies to everyone on this forum provided the correct attitude / positivity.

What we need to do now though is focus our energies on getting better as quick as possible. I know you have been doing that for years and are growing weary but ultimately this is the only option I see. I am working towards improvement in function not necessarily a cure and with every improvement in function there is a bump up in quality of life.

When you are in bad health and depressed it clouds your thinking such that you focus too much on negatives, this is just how our brains are wired. If you are anything like me you start looking at everything with a negative spin or with the worst kind of outcomes. This is why you can have a distorted image of your future if you start thinking about it when you are in a real rough spot. Anyway, hope this made sense.
 

Moof

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A story for you, @Aerose91.

A water bearer had two pots, each hung on one end of the pole he carried across the back of his neck. One of the pots was perfect, and always delivered a full load of water at the end of the long walk from the stream. The other pot was cracked, and arrived only half full.

The poor cracked pot felt bad because it was only able to accomplish half of what it was made to do. It spoke to the water bearer one day by the stream. “I am ashamed of myself, and I want to apologise to you.”

“Why?” asked the bearer. “What are you ashamed of?”

“I’m only able to deliver half my load because this crack in my side causes water to leak out,” the pot said.

The water said, “As we return from the stream, I want you to notice the beautiful flowers along the path.” Indeed, as they went up the hill, the old cracked pot saw the wildflowers on the side of the path. The pot felt cheered.

But at the end of the trail, it still felt sad because it had leaked out half its load, and again it apologised for its failure.

The bearer said to the pot, “Did you notice that there were flowers only on your side of your path, but not on the other pot’s side?”

“Yes,” said the pot, “they’re beautiful.”

The bearer said, “Remember, if you were not just the way you are, those flowers would not be able to grow.”


My illness gives me insight into the struggles of others that I would simply not have if I were well. This has informed my political activism, my work, and the way I've supported my friends and family for all of my adult life. It's a priceless skill, and it does enable flowers to grow.
 

Gingergrrl

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My illness gives me insight into the struggles of others that I would simply not have if I were well. This has informed my political activism, my work, and the way I've supported my friends and family for all of my adult life. It's a priceless skill, and it does enable flowers to grow.
Thank you for sharing that story @Moof which I really relate to and literally brought tears to my eyes. Although I do wish that I had never gotten sick, there are certain aspects of my life which would not have occurred if I had stayed healthy. There are also several very close friends who I would never have met. I will try to remember this story about the flowers growing when I get discouraged.

Also @Aerose91 it is really good to see you (even though I wish the circumstances were different :hug:). You have value, exactly as you are now, and the question that you posed brought about the great discussion in this thread (which has had value for me and for many others reading it now and in the future).
 
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The flower story is wonderful.

I kinda know that in my case, this illness has lead to great personal growth...while exacting a rather high tax.

I can see some flowers there, on the side of the path, which had a chance to grow because of the leaky bucket.
 

Lee88

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I felt I matured in one way due to my illness, but was infantilised in another. I gained greater empathy for all peoples suffering, I lost the desire to judge others completely. I even improved academically. However I never got to live on my own, I never taught myself to truly look after myself. I dwelled in my bedroom playing video games, watching tv, never realising the dreams I’d once had. Marriage, children, a career, holidays, spending more time with my brother who is also my best friend. But I feel I learnt the biggest lesson one should learn whilst on this earth and that’s compassion for other human beings.
 
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But I feel I learnt the biggest lesson one should learn whilst on this earth and that’s compassion for other human beings.
And therein, @Lee88, is a life well-led and fulfilled. There are so many things we want to do in this world and cannot for various reasons, one common to all of us here is our illness. But to be able to see that you have managed --not in spite of your illness but really prompted by it--to learn the biggest lesson of all is a great triumph. Neither easy nor the path most of us would choose (any of us?) but you have used your misfortune not only to your own benefit but for that of others. It is worth acknowledging and honoring in my opinion.
 

Aerose91

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Thank you all for your thoughtful replies, I know this is a heavy topic and it means a lot to me to read your replies. @Moof thank you for your story, it made me tear up a bit which is rare.

I would like to throw another layer onto this conversation if you're interested.

I went down at 26 and am now 34. At around 27-28, when I knew this wasn't going to be a quick recovery process and I may be in for the long haul, I started getting very down. Very distraught. But not at the disease.

I was a person who lived very passionately, who looked for deeper meaning and purpose. I always had that "you only get one shot at this life" attitude and when I realized I wasn't getting out of this quickly is when I realized I hadn't lived my life to it's fullest meaning. I hadn't yet tested myself the right ways and grown into the man that I knew I could be. I did test myself and grow but there were other, larger things about me as a person that I wanted to improve and once this illness took over, I realized those were no longer possible. Now yes, reflecting what you said @Lee88, I have grown and matured in other ways- namely compassion but those don't scratch that deep itch that I was after. I wanted to forge myself and live that deeper life of purpose that I hadn't yet achieved. It was always smoldering in the back of my mind to drop it all and take the dive but I hadn't yet done it at 26. The life I was leading wasn't wrong...….. but it wasn't right. I could have been more on track.

I'm realizing that the lack of meaningful personal growth that I was after has eaten at me as much as the loss. Not the lack of things I wanted to do but rather the lack of becoming the person I want to be. I mourn the loss of that opportunity more than possibly anything else. It's terrible to feel like you didn't live to your potential because in the blink of an eye it was gone
 
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Judee

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I was always a protector. I cared tremendously for my friends and loved ones and they all knew that if I was around everyone was getting home safely. I was a highly active person, personal trainer and former fighter and this became simply who i was. I'm not saying there weren't other things in life I wanted to accomplish- there were- but I had my roll in society and with my loved ones. I added to situations instead of subtracting from them. I contributed more than i took back and that fulfilled me. I was planning on building more on that so i could always be a valuble part of something greater than me.
It sounds like you have a calling. I think when someone has a true calling it does not die but rather goes through times of refining. You think it is gone now because of this illness but rather think of it as being dormant or in a cocoon waiting to emerge as something even more beautiful.
 

Gingergrrl

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It sounds like you have a calling. I think when someone has a true calling it does not die but rather goes through times of refining. You think it is gone now because of this illness but rather think of it as being dormant or in a cocoon waiting to emerge as something even more beautiful.
Wow, thank you @Judee and I found that really helpful and inspiring. Illness does not extinguish someone’s true calling or change their true soul. Your words made me think of the extreme pressure that coal must go through to become a diamond (I’m sure there are quotes about this much more eloquent than what I just said)!
 

Aerose91

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It sounds like you have a calling. I think when someone has a true calling it does not die but rather goes through times of refining. You think it is gone now because of this illness but rather think of it as being dormant or in a cocoon waiting to emerge as something even more beautiful.
Judee, it did/does feel like that. I always had that feeling of a higher purpose and cared so deeply about keeping goodness and safety for the people around me. One of the hardest parts of this has been seeing those people drop away the longer i was ill. It was like once i couldn't provide that value they were gone and didn't care about how much that hurt me, something I'm sure all of us here understand. It gives the feeling of people having brought you into their lives to privide a service and once you can't they have no more use for you. I understand people have lives to live but without a social group I've felt like i have no identity anymore. No value to the world. It eats at me
 
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