Tonight is the 8th anniversary of my marriage, but I am alone. This is not news to some, maybe to others, and maybe it's irrelevant to many. but to me it seems significant.
Thinking back on our time together, eleven years, it seems that the turning point came early on: a Fourth of July, very soon after our first year together, after declarations of love - which I personally do not give easily, had been made.
I was moving into my first home, a newly independent mother and college graduate. I was a bilingual education teacher enamored with the new cultures where I found myself daily and with this new relationship, one that actually felt real and adult, capable of blossoming along with me.
Simultaneously, he was divorced, moving out of his childhood home which he had purchased and struggling to survive as a single man, a part-time dad. I can understand this now, but certainly not then, and while I'm sure his perspective is different, he had not tread these waters before either.
I often wonder if examining these early years will reveal the answers of what was to come, an overshadowing of my own history? Maybe this is simply hindsight, or, what I often succumb to when writing: literary appeal? But surely there were lines being drawn at this time: powershifts and independence, loneliness, selfishness and fear ribboning around each of us, pulling us tight where we could not breathe, where we'd trip and bleed because we tied the ribbons together too tightly. There was blame and anger and pulling and stretching those ribbons into the skin like wires until flow was cut off to other parts. Yet when one bled, the other held the cool cloth, despite our own ribboned appendages, ribcages, teeth, and hearts. It became a weary kind of dance we did, to untangle the ribbons, each independently without twists or chinks, retying some tighter, letting some flow loose, but never ever letting go of the end of our strand.
So we worked through that next year with ribbons and scissors, trying to cut out and create a fit for us and for a while the future looked good, that maybe we 'd tied our hearts together just right, pehaps even with ribbon to spare; just enough silken spiral with which to spin ourselves a little bit free, just enough to lash the ribbon too tightly together heart-to-heart, breast-to-mouth, just enough to hang ourselves.
We tied and untied those ribbons for years, not paying attention when the ends began to unravel, and maybe we even stopped caring about our own ends of ribbon,at least i did mine, breaking the ties in anger and frustration only to lash the ends back together over and over. Can you imagine the mess? Not to mention tied up in this was one, then two homes, two, then three children, dogs, cars, bills, and then maybe nothing but a goddamn mess of string.
This story is about me though. I'm writing my way out of that web, the only way I know how, with words.
I collect lonely people, and like spoons, knives, and forks, all clanking together in the same drawer, we all belong, without fitting together. I know lonely like the rise and fall of my labored breath, like I know exactly when the cough will end, when my lungs will finally give in and spit out their ransom. I know lonely people. Broken birds. They are all around me, strung along throughout my life in sentence. Each though, a small constellation bringning me some light in the dark. I like the dark, something many don't understand, but if you do, you do, and if you do, then I'll bet somewhere along the way, our stars have crossed.
When I think about it, some maybe were not as lonely as I thought or as they presented themselves to be. I've been called mysterious more than once, but it's a falsehood. It's simply shy and alone. Alone isn't bad though, and that is the fact I have the most problem bringing to paper. The romance of lonely is hard to relsease to words. I know more than one pseudo-lonely soul made their way past my door for a night or two before I wisened up to their lack of real lonesome appeal. Too much bravado, too many words spoken and not enough whispers, a lack of something tangible in the dark. And the older I got, after I was married, when random nights spent unalone became a thousand and one nights alone with other people, I started to crane my ear to the chime of the computer, where the other lonelies, the truly alone, sat in some other place in some other world, our interactions a silent radioactive arc in which the only ways we lay entwined were with the words we spun.
I've now lost many of these friends. I know it is a direct result of the people I choose to interact with, though by no fault of anything other than faulty genes. I might be losing my husband in an entire different manner. I worry I am losing my almost-teenaged son. These losses have created a lethargy in me that somedays feels to heavy to overcome, and while I often felt a self pity that my suffering has gone unnoticed, I know that I turned away from any peering eyes into my despair. Because that is what lonely people do. We are alone. It's not a fault or a chemical problem, it just is. and along the way, I lost first one friend, then another, then my world, strung together by wirds was turned upside down by words untrue and I felt like concrete was being poured on my already drowning body and I could not, did not, care to breathe.
Caring for another lonely person, a bird I cannot fix, gives me purpose. It's a secret I've long kept concealed and which I know now to be futile, but I don't care. I cannot fix anyone, but the intent to try, a co-dependent tsumani, gives me some reason to listen, again. And here I leave a millions words unwritten, unsure who might read and what might be inferred, when I know all I have done is put thought to "paper." How easy it might be to slide down and allow my own words to become untrue, tied together only to buoy my lonely heart?
Showing posts with label understadning. Show all posts
Showing posts with label understadning. Show all posts
Tuesday, August 7, 2012
Wednesday, March 23, 2011
she's a good hearted woman in love with a good timing man
I love me some "old" country. I use the term "old" loosley, as I mean "old" as even up to the nineties - before country became the top 40 popular, trendy genre it's becoming now. I mean, I saw Faith Hill at the 4H fair in about 1996 long before Faith Hill was known for much of anything. And that's not to say I don't occasionally hear a new song that I like, it's just that tunes such as "Honkey Tonk Badonkadonk" or "She Thinks my Tractor's Sexy" just don't pull on me the way a little Hank Williams, sr. or jr., can or the way Crystal Gayle singing "Don't it Make my Brown Eyes Blue" does.
As a kid my dad used to listen to country music when he'd make us lunch. This was when I was really young. My dad made this sandwich called a "veggie special" in which he took a piece of whole wheat bread, spread some pizza or spaghetti sauce on it, put a little wheat germ on top of that, added some frozen mixed vegetables and then topped it off with a slice of American cheese. Into that new contraption called a microwave it went, and yum yum.
My parents were newly divored and though my dad was definitely the more health conscious of my two parents (hence the wheat germ. We also ate carob, weren't allowed gum with sacchirine in it and visited the Mekong Market where he bought little glass vials of ginseng which he called "Kra-teen Daaang" (sp)), he wasn't as much of a chef as my mother. As we sat at the table and waited for him to make the veggie specials, he would turn the little radio on in the kitchen to an AM country station. I can still hear him singing "Texas weh-eh-men" in a low baritone.
My dad introduced me to a lot of different types of music and for that I am really grateful. He did his Master's thesis on music ethnography in which he wrote about the blues. I assume thisa was when his vast study of music really started. The music of my childhood ranged from the reggae beats of Bob Marley, Peter Tosh, or Burning Spear to the wailing guitars of the Kings: B.B., Freddie, and Albert. Some days it was the jazzy sounds of Gato Barbieri, Wes Montgomery, or Miles Davis. I heard the bizarre sounds of Sun Ra and the melodic Augustus Pablo (I wanted to name my daughter Augustus or August if she was a boy and call her Gus. Augustus was influenced by melodian player Augustus Pablo and August was influenced by the Grateful dead song "Wharf Rat": "My name is August West and I love my pearly baker best more than my wine")).
My dad was a big Beatles fan so there was no shortage of them or the Rolling Stones or Cream and other music of the sixties and seventies. Other names that come to mind are Bloomfield Cooper and Savoy Brown, Leon Russell, Santana, Howlin' Wolf, and Charlie Parker. I remember on Friday nights we would go to dinner and then rent a movie (the VCR was also a new thing at this time). We watched Movies like "Bird" and "Crossroads." Clearly, my childhood musical education did not suffer. My dad was making mixed tapes from his record player waay back in the day. And so, in the afternoon we'd listen to country music.
When I met my husband he introduced me to a new subculture, one I had not really been privvy to in my middle class (maybe even upper middle class? I'm not sure where the class lines divide, really) upbringing: that of the "working man."
My father was an academic, my mother in social work, and my step mother a physician. My grandfather was Vice President of an Insurance company on one side and the other worked for a short time as a Foreign relations represenative for a local company that made materials used in WW II. That grandfather was from a small farm community rife with Amish called Nappanee. So for all our "worldliness" (my grandmother was the daughter of a diamiond cutter and grew up in South Africa) there was always that tinge of good old farm folk within us. Still, I knew relatively nothing about the world of the skilled trades and construction. My knowledge of construction was basically the stereotypical guy eating his lunch from a metal box sitting up high on the beam of developing building and whistling at women as they passed the site. G showed me that most of what I sterotyped wasn't true and I found great comfort and happiness with his friends and family. It was an easy integration of lifestyles and we found enjoyment on both ends of our spectrum.
G came from a family of brick layers. His grandfather, father, and both brothers were in the trade. G branched out and chose plumbing/pipefitting rather than bricklaying and much of this was due to the training he recived when he was in the Navy. His maternal grandfather had also been a Navy man though I don't know what career he had after that.
When I met my G I wasn't just introduced to this "blue collar" world, but along with that some new music. I started listening to Waylon and George Jones, Hank jr., Lynrd Skynrd, The Allman Brothers and The Marshall Tucker Band: Outlaw country and Southern Rock. It wasn't that i didn't know who most of those musicians were, only that I hadn't really listened to them. My dad had once forced me as a teenager to go and hear The Charlie Daniels Band one year when they came to the county fair. "It's Charlie Daniels, man!" he exclaimed. "You can't miss an opportunity to hear Charlie Daniels. I went reluctantly, but groused the whole time.
By the time I'd met my husband at age twenty three I'd formed my own musical taste, influenced by my upbringing and incorporated with my own preferred styles: folky rock, alt-country, and folky punk.
On one of our first dates my (not yet) husband and I went to a concert to hear Deep Purple, Ted Nugent, and Skynrd. Though not much of a fan of Nugent and Deep Purple, I really enjoyed hearing Skynrd. It wasn't the original band, but at that time there were still three of the original members. I'd been listening to quite a bit of classic rock in the time before I'd met my husband and had taken quite a liking to the Eagles and Bob Seger. My husband had a motorcycle when we met and Seger especially seemed to go hand in hand with this new guy: my pipe fitting Harley riding (soon-to-be) husband and this very exciting new romance.
After a few years together and my husband and I getting an ipod, I really took to the outlaw country. He had a lot of CDs I had never even heard until they were downloaded into the itunes. These songs were of hard working, hard drinking men and their tough and loyal wives. I felt as if G and I fit right into the mold of the stories told in those songs. Especially after out daughter was born and I was no longer spending as much time outlawing it with him as I was home with our baby. I truly felt I was becoming the like the women who sang and were in the songs.
The sad thing is, as much as I enjoyed it, I can't really listen to that music much any more. It has become too painful. I don't want to be married to an Outlaw and I don't want to be a woman who is singing about fighting for her man. It's funny that Hank Williams jr.'s song "Women I've Never Had" used to make me smile. Now it sort of makes me sick. "Jackson" makes me angry. Hearing "Whiskey Bent and Hellbound" is liable to give put the urge on me to put my fist through something much like Loretta's, "Fist City," though I can't listen to that one much either. Willie's songs still pull on my heart strings but they hurt too. I don't want to be the good hearted woman any longer.
I've been searching for songs that speak to who I am and where I am right now. As a teenager I used to play a game where someone would give me a word and I would come up with a song lyrics to go with it. I always said "life is a medley." Nowadays my motto has been more "music is god" and I've taken to letting the shuffle on the ipod teach me whatever lesson I am supposed to learn for the day. I'm trying to believe that things happen as they should and that I can only control so far as the end of my nose. That's left me adrift in the musical world. Despite all the music I've been introduced to in my life, I can't find a fit right now. I don't quite see myself heading into the Chritian rock arena though I suppose a song called "In His Hands" could work for me if it was perhaps renamed to something like "Wrapped up in the Energy of the Universe." and I bet that song exists somewhere too, though it's probably being chanted by a bald New Yorker who dropped out of Julliard to live in a Indian Ashram while his grandmother paid off his student loans for him.
My point about the music may have been lost, but what I'm trying ot say is that I am adrift right now and I am looking for an anchor or an identity. The previous nine weeks have made me reevaluate who I am, what I believe, and how I see myself. I can't find a song to identify with right now.
I am starting to believe that there is purpose in life that isn't always obvious as events are unfolding (maybe I always believed that, but it seems really obvious to me now). I'd like to think that my days spent as the faithful Outlaw wife had meaning and that the catastrophe that unfolded around me two months ago might just have been the answer to my prayers (and how fucked up is that anyway? if everything happens for a reason then the universe is one ironic fuck up of a place). If this is true, then I hope at some point I can listen to Waylon and Jessi singing "I ain't the one" again without breaking down. that I might once again enjoy crooning along with Hank about my wild friends that have settled down because I will be one of them. I may not identify in the same way with the music, but I won't have to shut it or certain parts of my life out of my mind because of all the hurt.
I'd like to imagine the broken pieces of my life settling into a compact pile of debris that's busy making diamonds under the pressure. If life happens as it should, and I can imagine a celestial hand holding me gently through it all, then I know every time things seem the most dire I will be eable to unearth one of those diamonds and find the beauty that comes from disaster.
If it happens as it's supposed to, then I can still hang on to Willie crooning, "If you had not fallen then I would not have found you, Angel flying too close to the ground." and all will not be lost with who I was but only that more is to be gained with who I am in the now.
(I totally apologize if this isn't all that coherent. I've worked on it off and on all day amid interuption after interuption and I just want to be done with it - so off to the internets it goes!)
As a kid my dad used to listen to country music when he'd make us lunch. This was when I was really young. My dad made this sandwich called a "veggie special" in which he took a piece of whole wheat bread, spread some pizza or spaghetti sauce on it, put a little wheat germ on top of that, added some frozen mixed vegetables and then topped it off with a slice of American cheese. Into that new contraption called a microwave it went, and yum yum.
My parents were newly divored and though my dad was definitely the more health conscious of my two parents (hence the wheat germ. We also ate carob, weren't allowed gum with sacchirine in it and visited the Mekong Market where he bought little glass vials of ginseng which he called "Kra-teen Daaang" (sp)), he wasn't as much of a chef as my mother. As we sat at the table and waited for him to make the veggie specials, he would turn the little radio on in the kitchen to an AM country station. I can still hear him singing "Texas weh-eh-men" in a low baritone.
My dad introduced me to a lot of different types of music and for that I am really grateful. He did his Master's thesis on music ethnography in which he wrote about the blues. I assume thisa was when his vast study of music really started. The music of my childhood ranged from the reggae beats of Bob Marley, Peter Tosh, or Burning Spear to the wailing guitars of the Kings: B.B., Freddie, and Albert. Some days it was the jazzy sounds of Gato Barbieri, Wes Montgomery, or Miles Davis. I heard the bizarre sounds of Sun Ra and the melodic Augustus Pablo (I wanted to name my daughter Augustus or August if she was a boy and call her Gus. Augustus was influenced by melodian player Augustus Pablo and August was influenced by the Grateful dead song "Wharf Rat": "My name is August West and I love my pearly baker best more than my wine")).
My dad was a big Beatles fan so there was no shortage of them or the Rolling Stones or Cream and other music of the sixties and seventies. Other names that come to mind are Bloomfield Cooper and Savoy Brown, Leon Russell, Santana, Howlin' Wolf, and Charlie Parker. I remember on Friday nights we would go to dinner and then rent a movie (the VCR was also a new thing at this time). We watched Movies like "Bird" and "Crossroads." Clearly, my childhood musical education did not suffer. My dad was making mixed tapes from his record player waay back in the day. And so, in the afternoon we'd listen to country music.
When I met my husband he introduced me to a new subculture, one I had not really been privvy to in my middle class (maybe even upper middle class? I'm not sure where the class lines divide, really) upbringing: that of the "working man."
My father was an academic, my mother in social work, and my step mother a physician. My grandfather was Vice President of an Insurance company on one side and the other worked for a short time as a Foreign relations represenative for a local company that made materials used in WW II. That grandfather was from a small farm community rife with Amish called Nappanee. So for all our "worldliness" (my grandmother was the daughter of a diamiond cutter and grew up in South Africa) there was always that tinge of good old farm folk within us. Still, I knew relatively nothing about the world of the skilled trades and construction. My knowledge of construction was basically the stereotypical guy eating his lunch from a metal box sitting up high on the beam of developing building and whistling at women as they passed the site. G showed me that most of what I sterotyped wasn't true and I found great comfort and happiness with his friends and family. It was an easy integration of lifestyles and we found enjoyment on both ends of our spectrum.
G came from a family of brick layers. His grandfather, father, and both brothers were in the trade. G branched out and chose plumbing/pipefitting rather than bricklaying and much of this was due to the training he recived when he was in the Navy. His maternal grandfather had also been a Navy man though I don't know what career he had after that.
When I met my G I wasn't just introduced to this "blue collar" world, but along with that some new music. I started listening to Waylon and George Jones, Hank jr., Lynrd Skynrd, The Allman Brothers and The Marshall Tucker Band: Outlaw country and Southern Rock. It wasn't that i didn't know who most of those musicians were, only that I hadn't really listened to them. My dad had once forced me as a teenager to go and hear The Charlie Daniels Band one year when they came to the county fair. "It's Charlie Daniels, man!" he exclaimed. "You can't miss an opportunity to hear Charlie Daniels. I went reluctantly, but groused the whole time.
By the time I'd met my husband at age twenty three I'd formed my own musical taste, influenced by my upbringing and incorporated with my own preferred styles: folky rock, alt-country, and folky punk.
On one of our first dates my (not yet) husband and I went to a concert to hear Deep Purple, Ted Nugent, and Skynrd. Though not much of a fan of Nugent and Deep Purple, I really enjoyed hearing Skynrd. It wasn't the original band, but at that time there were still three of the original members. I'd been listening to quite a bit of classic rock in the time before I'd met my husband and had taken quite a liking to the Eagles and Bob Seger. My husband had a motorcycle when we met and Seger especially seemed to go hand in hand with this new guy: my pipe fitting Harley riding (soon-to-be) husband and this very exciting new romance.
After a few years together and my husband and I getting an ipod, I really took to the outlaw country. He had a lot of CDs I had never even heard until they were downloaded into the itunes. These songs were of hard working, hard drinking men and their tough and loyal wives. I felt as if G and I fit right into the mold of the stories told in those songs. Especially after out daughter was born and I was no longer spending as much time outlawing it with him as I was home with our baby. I truly felt I was becoming the like the women who sang and were in the songs.
The sad thing is, as much as I enjoyed it, I can't really listen to that music much any more. It has become too painful. I don't want to be married to an Outlaw and I don't want to be a woman who is singing about fighting for her man. It's funny that Hank Williams jr.'s song "Women I've Never Had" used to make me smile. Now it sort of makes me sick. "Jackson" makes me angry. Hearing "Whiskey Bent and Hellbound" is liable to give put the urge on me to put my fist through something much like Loretta's, "Fist City," though I can't listen to that one much either. Willie's songs still pull on my heart strings but they hurt too. I don't want to be the good hearted woman any longer.
I've been searching for songs that speak to who I am and where I am right now. As a teenager I used to play a game where someone would give me a word and I would come up with a song lyrics to go with it. I always said "life is a medley." Nowadays my motto has been more "music is god" and I've taken to letting the shuffle on the ipod teach me whatever lesson I am supposed to learn for the day. I'm trying to believe that things happen as they should and that I can only control so far as the end of my nose. That's left me adrift in the musical world. Despite all the music I've been introduced to in my life, I can't find a fit right now. I don't quite see myself heading into the Chritian rock arena though I suppose a song called "In His Hands" could work for me if it was perhaps renamed to something like "Wrapped up in the Energy of the Universe." and I bet that song exists somewhere too, though it's probably being chanted by a bald New Yorker who dropped out of Julliard to live in a Indian Ashram while his grandmother paid off his student loans for him.
My point about the music may have been lost, but what I'm trying ot say is that I am adrift right now and I am looking for an anchor or an identity. The previous nine weeks have made me reevaluate who I am, what I believe, and how I see myself. I can't find a song to identify with right now.
I am starting to believe that there is purpose in life that isn't always obvious as events are unfolding (maybe I always believed that, but it seems really obvious to me now). I'd like to think that my days spent as the faithful Outlaw wife had meaning and that the catastrophe that unfolded around me two months ago might just have been the answer to my prayers (and how fucked up is that anyway? if everything happens for a reason then the universe is one ironic fuck up of a place). If this is true, then I hope at some point I can listen to Waylon and Jessi singing "I ain't the one" again without breaking down. that I might once again enjoy crooning along with Hank about my wild friends that have settled down because I will be one of them. I may not identify in the same way with the music, but I won't have to shut it or certain parts of my life out of my mind because of all the hurt.
I'd like to imagine the broken pieces of my life settling into a compact pile of debris that's busy making diamonds under the pressure. If life happens as it should, and I can imagine a celestial hand holding me gently through it all, then I know every time things seem the most dire I will be eable to unearth one of those diamonds and find the beauty that comes from disaster.
If it happens as it's supposed to, then I can still hang on to Willie crooning, "If you had not fallen then I would not have found you, Angel flying too close to the ground." and all will not be lost with who I was but only that more is to be gained with who I am in the now.
(I totally apologize if this isn't all that coherent. I've worked on it off and on all day amid interuption after interuption and I just want to be done with it - so off to the internets it goes!)
Wednesday, October 28, 2009
go back jack and do it again
edited 10-28-09 - 9:22pm whilst awaiting infusion
I have the time to address some of the topics that came up from the hubsand post.
But first, I shall toot my own horn. This morning I: infused two meds, vested, nebulized, fed aand changed a baby, dressed a toddler in a fairy costume (and got her to brush her hair), went to the grocery store with both children, put awat groceries and started laundry. woot.
No one better call me lazy. I do think I feel better though. I am still a bit SOB, but my energy (minus my lack of sleep, which will hit soon, I'm sure) seems a bit higher. Maybe it is mental, maybe it is just the need to get things accomplished, maybe it is the abx...who knows.
On to matrimony:
I showed my husband all the comments yesterday(I think there are like 17 of them! so cool!) and asked him to read them. His gracious reply was, "I don't feel like getting on the computer right now." humph. Seriously though, your comments brought a few issues to light for me.
1)The lack of interest, whether it be from fear or ignorance or what have you, makes me feel unloved and unimportant. I can't seem to get him to get that, but I need to recognize it and I need him to recognize it too.
2) Compassion and understanding are not the same. I have long thought my husband lacked compassion. Chalk it up to his upbringing. That is not the same as not understainding. I can expect him to educate himself and to try to understand the dymanics of CF, but I can't expect him to truly be able to put himself on my shoes. Right now he is failing at both a bit, but we can work on the one, the other not so much.
3) My husband takes care of me in a physical sense. He got up at 5 to help with my first infusion, he changes the oil in my car, he does laundry if I ask, takes care of the house (outside and mr-fix-it stuff, mainly)....emotionally, he is not as strong. He doesn't know what to do when I cry, doesn't know how to handle when I try to explain my expectations for him emotionally, and honestly, has no idea how to handle the emotional (or physical) demands of CF.
4) My husband DOES think I complain a lot. But the thing is, he and I have different definitions of complaining. I think complaining is sending your soup back because it doesn't have enough cheese on it, or whining about weather and things you have no control over. I don't think complaining is saying, "I have so much to do tomorrow, I have to do a and b and c and by d and f for ghij and k." So that ne we might be at a standstill...
5) It is Ok to be tired and to take time for myself to do what I need to do with CF. With or without a husband, I will have CF, and for that my health has to be first. I want to be here for my kids and my husband and family, and I can only do that by taking care of me, even if I have to do it alone.
6) Another comment came in today while I was having my PICC fixed (see below) with reagrds to my husband's diabetes. I do take the time to inform myself on diabetes, to a point. I read a book about it when we first met and he started insulin (he is type 1 but was misdiagnosed as type II in the Navy). I share any new info I learn about it (though it usually comes from CFRDers, still, diabetes, diabetes), I make his lab appointments and doc appointments - so yeah, I am involved. I have not joined a diabetes support group or website or anything like we cystics have, but I know more about diabetes than I think he knows about CF. Part of this is just because we are not created the same. I was brought up reading and asking questions, he was not. I have to learn eveyrthing I can about a new thing, while he is content with just knowing what he needs to know or what "authorites" tell him. I don't think one way is necesarily better than the other and certainly I waited years to allow myself to learn details about CF, my own disease! but it is a different way of coping, and as with the aforementioned physical/emotional divide, this is another way we are soooo different.
BAH. I have to go back to infusion. something is wrong with this PICC. I can ~feel~ it in my body, if that sounds wierd, I know, but there is pressure in my chest and my heart keeps beating really hard. so much for easy.
PICC fixed. I hope.
I have the time to address some of the topics that came up from the hubsand post.
But first, I shall toot my own horn. This morning I: infused two meds, vested, nebulized, fed aand changed a baby, dressed a toddler in a fairy costume (and got her to brush her hair), went to the grocery store with both children, put awat groceries and started laundry. woot.
No one better call me lazy. I do think I feel better though. I am still a bit SOB, but my energy (minus my lack of sleep, which will hit soon, I'm sure) seems a bit higher. Maybe it is mental, maybe it is just the need to get things accomplished, maybe it is the abx...who knows.
On to matrimony:
I showed my husband all the comments yesterday(I think there are like 17 of them! so cool!) and asked him to read them. His gracious reply was, "I don't feel like getting on the computer right now." humph. Seriously though, your comments brought a few issues to light for me.
1)The lack of interest, whether it be from fear or ignorance or what have you, makes me feel unloved and unimportant. I can't seem to get him to get that, but I need to recognize it and I need him to recognize it too.
2) Compassion and understanding are not the same. I have long thought my husband lacked compassion. Chalk it up to his upbringing. That is not the same as not understainding. I can expect him to educate himself and to try to understand the dymanics of CF, but I can't expect him to truly be able to put himself on my shoes. Right now he is failing at both a bit, but we can work on the one, the other not so much.
3) My husband takes care of me in a physical sense. He got up at 5 to help with my first infusion, he changes the oil in my car, he does laundry if I ask, takes care of the house (outside and mr-fix-it stuff, mainly)....emotionally, he is not as strong. He doesn't know what to do when I cry, doesn't know how to handle when I try to explain my expectations for him emotionally, and honestly, has no idea how to handle the emotional (or physical) demands of CF.
4) My husband DOES think I complain a lot. But the thing is, he and I have different definitions of complaining. I think complaining is sending your soup back because it doesn't have enough cheese on it, or whining about weather and things you have no control over. I don't think complaining is saying, "I have so much to do tomorrow, I have to do a and b and c and by d and f for ghij and k." So that ne we might be at a standstill...
5) It is Ok to be tired and to take time for myself to do what I need to do with CF. With or without a husband, I will have CF, and for that my health has to be first. I want to be here for my kids and my husband and family, and I can only do that by taking care of me, even if I have to do it alone.
6) Another comment came in today while I was having my PICC fixed (see below) with reagrds to my husband's diabetes. I do take the time to inform myself on diabetes, to a point. I read a book about it when we first met and he started insulin (he is type 1 but was misdiagnosed as type II in the Navy). I share any new info I learn about it (though it usually comes from CFRDers, still, diabetes, diabetes), I make his lab appointments and doc appointments - so yeah, I am involved. I have not joined a diabetes support group or website or anything like we cystics have, but I know more about diabetes than I think he knows about CF. Part of this is just because we are not created the same. I was brought up reading and asking questions, he was not. I have to learn eveyrthing I can about a new thing, while he is content with just knowing what he needs to know or what "authorites" tell him. I don't think one way is necesarily better than the other and certainly I waited years to allow myself to learn details about CF, my own disease! but it is a different way of coping, and as with the aforementioned physical/emotional divide, this is another way we are soooo different.
BAH. I have to go back to infusion. something is wrong with this PICC. I can ~feel~ it in my body, if that sounds wierd, I know, but there is pressure in my chest and my heart keeps beating really hard. so much for easy.
PICC fixed. I hope.
Sunday, October 25, 2009
I can't get no satisfaction
Dearest readers,
Now is my turn for Q and A. As many of you know, I struggle with my husband understanding CF - and trying to get him involved. He won't go to websites, he doesn't read this blog. So I ask you now, please, post an answer to my question. I might copy and paste some of the answers into an email to my husband, so you don't have to write directly to me, but rather just pontificate on the subject :) (pontificate is a good word, no?)
So, what is the one main thing you would want or expect someone who loves you to know or understand about CF...what do you think or wish people would "get" about this disease. If you read and don't have Cf, maybe what is the one thing you wish you could know or understand about CF?
Honestly friends, I am at my wits end with feeling that I get no compassion around here, so your answers might be able to shed light in ways that I can't.
Now is my turn for Q and A. As many of you know, I struggle with my husband understanding CF - and trying to get him involved. He won't go to websites, he doesn't read this blog. So I ask you now, please, post an answer to my question. I might copy and paste some of the answers into an email to my husband, so you don't have to write directly to me, but rather just pontificate on the subject :) (pontificate is a good word, no?)
So, what is the one main thing you would want or expect someone who loves you to know or understand about CF...what do you think or wish people would "get" about this disease. If you read and don't have Cf, maybe what is the one thing you wish you could know or understand about CF?
Honestly friends, I am at my wits end with feeling that I get no compassion around here, so your answers might be able to shed light in ways that I can't.
Thursday, July 24, 2008
ahimsa
So after it being a hot topic in chat (alternachat) last night - and then reading back through Tara's blog and the "family chat" post, I thought I would share my own opinions here, in the safety of my own blog. I really really try to avoid forum drama - I mean, I have enough drama right here IRL, I need it not in my cyber life as well.
Kev's response really made me think though - about being insensitive. I think I have been insensitive soooo many time with regards to CF. I realize we are all in our own battle here, in different places on our maps and while we are all somehow connected by the Cf thread, we're different in how frayed each of our ends are - and so while my end still goes through the eye of the needle with just a little spit, some people's ends are so frayed that there is no hope of ever seeing the eye of the needle again.....getting carried away on the metaphors here, I'll stick to the point...
what I am trying to say, I think, is that I am sorry. I am sorry for not better understanding the battle this disease presents. More than once I know I have selfishly thought, "I hope that doesn't happen to me..." when reading the different posts. And so I am sorry that I haven't put myself in the shoes of all those who are unable (but might have otherwise wanted to) - to have children, for whatever reason. That I haven't thought more kindly in genereal for all of us suffering in our own ways - because no matter how we stand with this disease, surely no one's struggle is less important than anothers...?
After chatting last night and reading the family chat thread, I reread what I wrote in Tara's blog, to see just how insensitive i might have sounded. But I think I can stand by what I wrote. Children, once you have them, usually do become the love of your life - generally, there isn't much you can do about that, and often, people without kids don't fully understand that (and no, I do not think that makes them self absorbed - it's like anything you're not a part of that you may not fully understadn - do we expect our non CF counterparts to ever fully understand life with this disease? doubtful); and I do hope that those who are having a hard time with the children issue can find peace with that as well.
At the same time - sometimes mom chat IS Cf chat - as a mom with CF, managing kid care and disease is a job in itself, and I think as a mom of 2 and a nursing mom as well (21 months, yo) I have a lot to share that is related to CF and being a momma - and while I don't mind saving it mainly for the pregnancy board for the sake of the community, i don't necessarily like the idea that that bit of my CF knowledge should be segregated as if it less CF-worthy because not everyone can relate to it.
I think a big part of who I am is in working on practicing compassion (ahimsa for the yogaphiles), and it is something I can ALWAYS do better, and I will, here.
Kev's response really made me think though - about being insensitive. I think I have been insensitive soooo many time with regards to CF. I realize we are all in our own battle here, in different places on our maps and while we are all somehow connected by the Cf thread, we're different in how frayed each of our ends are - and so while my end still goes through the eye of the needle with just a little spit, some people's ends are so frayed that there is no hope of ever seeing the eye of the needle again.....getting carried away on the metaphors here, I'll stick to the point...
what I am trying to say, I think, is that I am sorry. I am sorry for not better understanding the battle this disease presents. More than once I know I have selfishly thought, "I hope that doesn't happen to me..." when reading the different posts. And so I am sorry that I haven't put myself in the shoes of all those who are unable (but might have otherwise wanted to) - to have children, for whatever reason. That I haven't thought more kindly in genereal for all of us suffering in our own ways - because no matter how we stand with this disease, surely no one's struggle is less important than anothers...?
After chatting last night and reading the family chat thread, I reread what I wrote in Tara's blog, to see just how insensitive i might have sounded. But I think I can stand by what I wrote. Children, once you have them, usually do become the love of your life - generally, there isn't much you can do about that, and often, people without kids don't fully understand that (and no, I do not think that makes them self absorbed - it's like anything you're not a part of that you may not fully understadn - do we expect our non CF counterparts to ever fully understand life with this disease? doubtful); and I do hope that those who are having a hard time with the children issue can find peace with that as well.
At the same time - sometimes mom chat IS Cf chat - as a mom with CF, managing kid care and disease is a job in itself, and I think as a mom of 2 and a nursing mom as well (21 months, yo) I have a lot to share that is related to CF and being a momma - and while I don't mind saving it mainly for the pregnancy board for the sake of the community, i don't necessarily like the idea that that bit of my CF knowledge should be segregated as if it less CF-worthy because not everyone can relate to it.
I think a big part of who I am is in working on practicing compassion (ahimsa for the yogaphiles), and it is something I can ALWAYS do better, and I will, here.
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