The Thrill of Insomnia
I was having a conversation with a very dear friend today and one of the things we discussed, I'm paraphrasing, was the concept that everything happens for a reason and that there are no coincidences. I've always been conflicted about those two ideas. Often, I wonder, If I am in charge of my own destiny, why would I choose to derail myself with Graves' disease? Then I back flip and ask myself, If I'm not in charge of my destiny, why was this placed in my life? After yet another back flip, I ask, How can I control IT instead of IT controlling me? As you can see, I still haven't answered my own damn questions and remain conflicted.
In my opinion, I don't believe we create illness. I don't think we ask for illness to overtake our bodies and shift the course of our lives. I don't think illness serves a greater good. Just as I don't think there's an upside to death. Losing someone you love is horrific, full stop. Admittedly, I am the worst at facing death head on and saying "Hi there. How ya doin'? Thanks for your time and for stopping by. You took my beloved. That's cool. Carry on. Have fun together. I'll catch ya later."
No, no, no. I hang on too tight. I haven't made peace with who I've lost. I do regard this as a shortcoming, definitely, and as a lack of maturity, perhaps. I am learning how to create a better relationship with death. However, I'm not sure I'll ever get to that zenny higher self, higher-whatever-the-fuck, place. I'm not being pessimistic, on the contrary. I'm selfish. I want who I love to be here with me, not there, wherever you regard there as being. I want to see, touch, feel and smell the people I love as often as possible. I can be cunty in that regard.
I do think we have choices about how we manage what we can't control. As my mother incessantly drills into my head process, process, process. She would be right. Managing choices is a process. Speaking for myself, when I was first diagnosed with Graves' disease and how I am dealing with it today aren't yet night and day, but there is a recent marked difference. I attribute that to Shrinktail, time, frustration and genuine support from the people who know me and love me.
So, back to my original questions, does it boil down to faith? And, if it does, what if faith in myself, in God and in people has been provoked to the point of what feels like delirium? Then what? If faith doesn't factor into the equation, what do I believe?
Hmmm....
Katie?
Kaaatie?
Kaaaaaaaaaaaaaaaaatie?
Wait. Gaaahd, I'm thinking. Geez Louise, give a girl 5-minutes, wouldjya?
Can I pee first? The walk will do me good.
Fine. Fine. Fine.
I'm back.
Okay.
I do not think everything happens for a reason. From a purely scientific perspective, it's illogical. As Bukowski wrote, What matters most is how well we walk through the fire, essentially, managing what crosses our path. To that end, there is always an opportunity to take what we're confronted with and learn from it, I think. As for faith... it's on the mend, I hope.
Comments
I haven't made peace with who I've lost. I do regard this as a shortcoming, definitely, and as a lack of maturity, perhaps.
i dont think any of us really make peace with who we lost. we deal with it and it doesnt hinder the daily operation called life -- but the thoughts, feelings and memories are there -- sometimes as if it was reality. i think what i do is make those thoughts of pain and loss turn into a reality of yesterday (did you get that?) and the pain goes away - but i am not at peace.
second - everything happens for a reason? who knows? sometimes i think it doesnt matter. whether it does or doesnt you just have to move on and do whatever the next think is. since i really dont believe in god, the faith i have is the faith that i will wake up tomorrow and do the best i possibly can.
i dont know if any of this makes sense - but then again, i rarely do
No need for Weight Watchers meetings, Atkins or Trim Spa.
On the other hand, make sure you get treatment because as I'm sure you know better than me, Graves untreated can cause heart problems and you don't want that.
As far as choosing a disease or a condition goes, I've heard people say we "create illness." I always want to smack them up along side their heads. I have Asthma. I've had it since I was a kid. But I still played sport, ran cross country, played baseball and tennis. But I didn't "create" it. That's just crazy talk.
Jeez, I wrestle with this from time to time. I don't believe in god, so it would be hard to explain what's behind the reason.
But then something happens and whammo! I'm left wondering if there was some invisible hand guiding things to that point.
Sometimes I use it as an excuse to NOT manage the process of what's happening. Sometimes I use the idea as a way to explain those things that I just can't wrap my head around.
It's a psychological tool for me. I don't often think in terms of faith, as it's most often applied, but I do wonder......
That you can write about this with such beauty and grace speaks volumes about you and your gorgeous neshama.
Faith is about... faith. Religious or not - faith is about hope really, belief in the what is, what will be.
I recently wrote about fixity and faith and I think a lot of the fixity we see in others is a reflection of not walking through the fire well.
It is all hogwash. 3300 hundred year old philosohpy.
Just read your blog post and see that we have something else in common besides this infernal scribbling of words. I was diagnosed with dermatomyositis a year ago, another AI disease. I've already had two major bouts of it, one which kept me in the hospital for 34 days (and almost crippled). Thankfully, I'm in remission now and hopefully will stay that way, but you never know.
Which leads me to your point. While my wife struggled to find a reason / trigger for the illness, blaming everything from eating sushi to a bee sting, I was secure in the knowledge that it was just my turn. Better put: instead of "why me?", I asked "why NOT me?".
One thing I keep telling myself ... I am NOT my disease; however, I cannot help but be changed by it in so many ways. I climb stairs and I'm literally thanking God after each step. The fact I can actually lift my arms to wash my hair is a thrill. I
don't think this is "why" we get these illnesses - I don't believe in a God who makes us sick in order to teach us some deep life lesson - but how we address and overcome them is both telling of our character and ultimately makes us more appreciative of what we have (instead of what we don't have).
Keep striving,
Michael
Accepting its existence, the baseline. Then where do we go? Experience is all that there is to be gained from it, nothing more, nothing less. And I'm trying to think of a way to articulate this without sounding like a fucking afterschool special.
I know how mere setbacks can completely fuck with my insides, let alone something far more profound such as a disease or the loss of a loved one.
All this blabbing is a variation on the theme that you and everyone else said: it's there, you keep on keepin' on in whatever way you can. There isn't a magic elixir.
My embodied mind seems to want to put things in an ordered framework that makes sense, but I think it is all far more vast than a human mind can really embrace. I tend to think that there is a part of me that is in all of the rest of what exists, a kind of we are one thing.
For me, staying in the now is just about the only thing I find useful. I do not see a contradiction (paradox, perhaps, but not a contradiction) in staying in the now and making plans. Very often the best choice I can make in any given moment is one that reflect wise future planning.
Randal- Don't make fun. I learned all this from an afterschool special that Martin Sheen was narrating.
You make perfect sense. I getchya. I love what you said about never making peace with loss/death.
I interpret as: If I don't force myself to make peace with it, maybe I can learn to live side-by-side with it and still move forward.
Again, great point regarding the relevance of things happening for a reason. There are times I want to think that it's true because it helps me sort it out in my head. Other times, the idea of it seems nonsensical and, or I can’t relate. I know that I aspire to be open to new ideas.
As you so eloquently put it, "whether it does or doesn’t you just have to move on and do whatever the next think is."
Thank you for participating and adding to this discussion.
No way you created asthma, why would you want such a thing in your life? You wouldn’t!
In my opinion, I actually don’t think weight is an upside to Graves’ disease because it can kill you.
With Graves’ disease one of the misconceptions is that it’s a straightforward disease with straightforward treatment options. I have come to learn this isn’t so. Many cases are different and are based on various criterions.
1) I am fat.
2) I got fat for two reasons, initial mistreatment and multiple misdiagnoses, which lead to incorrect treatments that caused hypothyroidism in addition to Graves’ disease.
3) Once my thyroid was nuked, I became severely hypothyroid, which lead to additional weight gain.
4) A year and a half into proper treatment, I’m still fat. Struggling to take this weight off because I can’t get my thyroid balanced. As I’m sure you would agree you can’t give up, right? You have to keep trying new, better, different endocrinologists and remain open that you’ll hit one who can actually help you get your mind, body and soul back to where you feel like you again. I’m not kvetching, really I’m not. I’m simply sharing my own story, the abridged version.
All of that said, I can’t help but think about those who struggle with their weight for different reasons and how frustrating it is to lose it and to keep it off. I also know a few dames who are curvy by nature and have more of a renaissance figure. Though others might regard them as fat, should they really? Especially, if they’re happy and feel fabulous and sexy and live full lives. Isn’t that the goal in life? Is it our place to suggest that being fat is a negative thing? Maybe it’s just me, but I get the sense that weightiness might be something you’re uncomfortable with. I could be wrong and if I am, please correct me, at least I hope you will.
I think this is an interesting discussion, no?
DivaD, That struck a chord for me big time. I can relate to that. I think I do that, too.
So, now I have another question, is parsing out the concept that things happen for a reason akin to selective listening? Is it a coping mechanism and if so, is it a positive one? Or does the concept itself simply keep our minds open to new ideas and possibilities?
Thank you for adding to this dish sesh, doll.
You’re right; making peace with loss is a journey that we all have to take. It’s filled with many components and there’s nothing linear about it.
I know people who do it with such grace and dignity, and a kind of maturity, or perhaps its peace, or strength, or confidence in the process. I’m not sure, though I wish I had it. Sometimes in my zeal to hang on, I squeeze myself into a box and shut the living out. I do not think this is healthy.
As DCap said, i dont think any of us really make peace with who we lost. we deal with it and it doesnt hinder the daily operation called life. If I can get to that place of not hindering the daily operation called life, I’m golden.
I absolutely adore what you wrote about faith, specifically this: belief in the what is, what will be, I’m striving for that.
WAIT – Why do they conflict with each other? If we control our destiny, then aren’t we essentially buying into the idea that things happen for a reason?
Thank you SO MUCH for joining in on this discussion and for sharing your personal story.
I am so sorry that you have dermatomyositis. I am grateful that you are getting treatment and that you’re in remission (Mazel Tov). I can’t believe how much you’ve endured. I hope you stay in remission. You must. You’ve been through enough.
Don’t you feel like you’ve hit your disease quota? Do you know what I mean by that?
Your attitude is remarkable. I was secure in the knowledge that it was just my turn. Better put: instead of "why me?", I asked "why NOT me?".
That took my wig off. Astounding.
Question, please, if you don’t mind, did you have that mindset from day one or was it a gradual process?
You’re right when you say, “I am NOT the disease”. I find it challenging to remind myself of that. It’s consumed so much of my life in so many ways. I feel like it’s become me and I’ve become it. However, you’ve given me an infusion of hope: instead of focusing on what I’ve lost (so far), focus on what I haven’t. Maybe because I’m still in the trying to get right with it physiologically I’m not yet there. You are where I want to be mentally.
I don't believe in a God who makes us sick in order to teach us some deep life lesson - but how we address and overcome them is both telling of our character and ultimately makes us more appreciative of what we have (instead of what we don't have). YOU ARE SOOOOO RIGHT ON THE MONEY, YO.
I absolutely love, love, love your attitude and spirit.
Thank you, thank you, thank you for posting.
I love what you wrote, every word. You don’t sound like an after school special, gaaaahd :)
Being at peace is a nebulous thing; how does one define peace? We all have different visions of what that is, what it should be, fueled by the conflict between what society deems and what our emotions want.
It’s personal—you’re right. I can’t disagree with that sentiment.
Experience is all that there is to be gained from it, nothing more, nothing less.
Maybe that’s enough, perhaps that’s the winning end-result.
This is excellent food for thought and I really appreciate it.
For me, it seems, the more I can embrace the paradoxes of this life, the more at peace I seem to become.
I need to do that. I don’t do that and I definitely (as you stated later), don’t live in the now as much as I should. I tend to focus more on the future, that’s my coping mechanism. A terrible fault, I know.
Of late, I have been living more in the now and it’s having a positive impact on how I am moving forward. Ironic, no?
You’re way more zen than I am, child. I wish I had that.
Thank you, FB, for adding to this dish.
Fortunately, I'm 100% and with a lot of luck (and some good meds), I'll stay this way :-)
Regarding the "disease quota," yes, I do understand completely. One of the side effects of DM has been ulcerative colitis, another AI disease. Thankfully, when the DM went into remission, the UC did, too. Losing the ability to walk with assistive aids and then having GI issues on top of it really made last November difficult.
As for the mindset to which you refer, I think I always had that attitude, but I really didn't verbalize until my wife said "Why you?" when we got the diagnosis. We learn so much about ourselves in times of crisis, don't we? It doesn't hurt to really explore your feelings during such times, that's for sure.
You take care of YOURSELF, too. For me, keeping my sense of humor - including laughing about myself through all of this - has been what's kept me sane and grounded.
Michael
Sure! But not some kind of supernatural, higher power reason. It's just a matter of cause and effect. If I eat a hunk of e coli tainted rare beef, I'll get the shits. Fate didn't make me get the shits to keep me from going out that night and the place I had planned to go burned down.
You and I got Graves disease because our thyroids were defective, not because we were bad girls.
And you're right. I have no idea where the hell I'm going with this! So I'll stop now, before something really bad happens!!
As for faith, your soul, and all the rest...it's not clear at all. Enjoy being on the mend and making progress, it's a great place to be!
I believe in reality and that death and all other limits, like health, will hit me like a ton of bricks. When I can't any longer ignore them, then I'll deal with them. I believe we all have good days and bad days to live during our lives, I'm determined to make the rest of my good days as great as they can be. I refuse to rob any good days I have left being afraid of the bad days.
Death and illness can take me down, but damn it, it'll have to knock me down first, cause I'm not gonna just lay down and give up.
If this makes no sense, just ignore it and use your own coping methods. My wife was once diagnosed, for a short time, with MS, and this thinking totally offended her.
Humor is my saving grace, too. I have more Graves' jokes than I know what to do with, starting with the name of the disease. Could it be any deathier?!?!
Fortunately, I come from a family of dark humorists, so there's that. I'm lucky in that respect.
What I'm guilty of is losing my way when I'm in the middle of new rounds of tests with new endocrinologistis, etc. I know it won't always be this way, but sometimes I feel like "Enough already, for the love. I'm in my fuckin' 30s, I should be thinking about fucking, not worrying about a God damned life sucking disease."
I know that's super victimee and lame. Fear not, I don't think/feel that way too often.
Thank you for elaborating to the degree that you did. I'm so glad to hear that the other AI disease went away after the DM went into remission. November must've been a mega bitch for you, doll. It's behind you.
Great advice re: exploring feelings and such during crisis/illness. That's why I am shrinkdating Shrinktail. One of his specialties is thyroid disease. Between that and his unorthodox methods, I feel like I'm making headway in that department finaly.
YOU TAKE CARE OF YOURSELF.
Thank you for sharing more. Mazel Tov on being 100%. WOW. I am so happy for you. I hope I'm hot on your heels, kid.
I'm so happy you chimed in on this one!
To answer your question, I don't know of anyone else in my family that had Graves Disease. But my mother did have a goiter when she was in her twenties. The treatment back then was to slice open the throat and remove the enlarged thyroid gland. It was nasty! She carried that thick scar on her throat for the rest of her life.
Modern treatment is an improvement, but, as you have found, it takes a while after the nuking to get your hormones in order again. You are "Struggling to take this weight off because I can’t get my thyroid balanced." I think the problem is that what's left of your thyroid hasn't had time to settle down. When it does, getting the right amount of synthetic thyroid hormone should be pretty straightforward. It took about a year, I think, for me to find the right dose. Once you get to the right "maintenance" level of Synthroid, and eat right and exercise, your weight should come down. I wish you the best, my dear blog-friend.