I've been trying to be zen lately. If not zen at least not fighting things. I'm a woman who LIKES to be in control and DISLIKES when I'm not in control.
With lupus- as with any chronic illness - control goes right out the window. Now I have a few more illnesses to contend with as well. I don't even feel like talking about it right now- its just too new and raw really. Later. I still feel beaten by it.
Meanwhile - I'm trying to "find the gift in the hit." Like they tell you to do in martial arts... or find the gift in the critique... when you get a HUGE lambasting in a journal edit review- but when you look back - you realize that they've given you ENORMOUS careful edits too - so your work will look like GOLD once you go through and incorporate the words they've given you.
I'm really trying to turn my "nonjudgemental compassion" on myself. And not think I deserve this illness. Not think I've done anything to EARN IT. Not done anything WRONG. Because I haven't. It just happened. And it sucks. And I can handle it.
And I'm taking my meds and working on visaulizing them healing me and helping me regain some balance in my life.
I have moments where I can imagine myself whole and having a real life again. And - there are times when I realize that MY "real life" is never going to be the "real life" that I would have created for myself. But then - who's is. The difference is, I suppose... that MOST PEOPLE have made choices to create their bad lives... like becoming addicts or punching their boss in the face or drunk driving or what have you.
Others are not ill - so even when you didn't choose your circumstances, coming back from a hit is easier - you just march on and soon you move forward with your own forward momentum.
And I realize today that when you are chronically ill, in pain, sick - and illness keeps you sick - illness makes you STOP WHAT YOU ARE DOING RIGHT NOW - go the the ER - the doctor, the new doctor, a new illness, take new drugs, refocus, eat a new diet, try something new new new new different... you don't GET momentum. You get change, adaptability, flexibility, change.
That is what illness teaches you.
And so - though I have hobbies and jobs that I LOVE - I LOVE I have had to give some up or at least put them down for a while. And I miss them. I miss the hobby themselves and I miss the people in the hobby. I'd like to THINK that the people would miss me- they'd come around, stay in my life. But in fact, most people 1) don't handle illness well 2) only want illness to be for old people 3) get annoyed by constantly sick people 4) feel BETRAYED if you don't hide it well enough and 5) only want you around if you're FUN AND HAPPY. If you cannot be those things you are not useful to them.
I used to think those people were my friends. Now I realize that long ago a friend told me about "work friends" and "real friends" and I tried and tried to understand what she meant. I never got it. I never separated out people I love. And I still don't. If I love people- I just love them. I don't make BIG GIANT BOUNDARIES AND WALLS. I just love. So - it hurts more when they don't love back openly. But - it leaves room open for lots of love when they DO love.
I have MORE FRIENDS than most people BECAUSE I'm willing to risk and BECAUSE I have big wide open heart... meanwhile - I dare say I get hurt more often too - because I LOVE. And when people are like - oh - meh- I was just having fun with you - but now that you're no fun - pfft. Well - that BREAKS MY HEART. And then it pours salt into the wound when other people say- you should have KNOWN-- they were just "work/improv/hiking/hockey/x friends." Because to me they were FRIENDS.
SO - this is part of it. I also know that it happens to other people and NOT just when they get sick - but when they take a hit. Their "friends" disappear like roaches scurrying into the light of a dawn. And they are left to pick up the pieces.
Meanwhile. I DO have some friends left from each venture in my life - old jobs, hobbies, states. And they are truly cherished. And it helps to remind me the QUALITIES of what to look for the next time. "Make better friends." is advice someone told me once. And I took it to heart.
I also know that the older people are - the more they are to have compassion for illness and the less likely they are to judge it... young people GENERALLY are jackasses UNLESS they themselves have been exposed to disability or illness. This is, however, a generalization. One of my most jerky fairweather "friends" is 55 and on of my most cherished friends is 16. So - you know -- keep your eyes and your heart open.
And lastly- something I've been thinking about is yoga poses. Asanas. When you can't do something in yoga - a good instructor never makes it about YOU and YOUR inability. They will say, "this asana is not available to you right now - try something else."
And I'm trying to think about that right now in the context of my life... how not to judge, how to be less frustrated... how to see my life as open with other possibilities.. "Improv is not available to me right now, I will try knitting." "Sitting is not available to me right now, I will lie down." It's much more ABLING to say what I WILL DO rather than focusing on what I cannot do..and then saying what I will do.
I'm still grouchy and sad about it. I MISS improv. And I have a little plan cooking up with a genuinely good friend for some improv fun that I might do-- it will be a sort of standup/improv mix... But she's aware of my health and she's ok with it. She's wonderful and she's very much into meeting me where *I* am. And we have fun together. So-- perhaps improv is available to me- only in a different context. And we'll have fun on stage - just doing something a bit different... And maybe that's where we can shine.
I've been making a schedule for my dissertation too -- because that's what HEALTHY people do. And I want to see myself as "healthy"... and "able"... I want to see myself as with a FUTURE.
So I'm writing now. And I'm doing what I CAN do. And I'm seeing myself as able to do other things. And I'm letting myself miss my old hobbies. I miss ice skating still - and I haven't skated in a decade. I LOVED IT. We used to play hockey or skate 3-4 nights a week! And I MISS THAT. But when I couldn't- I had to find other things to do... because hockey was no longer available to me.. so I began hiking and walking and biking- and going outdoors... and being grateful for the use of my legs. Yes - I miss the old people I skated with - and only ONE of those people are still my friends. ONE. Sometimes you just water your garden and grow the flowers and enjoy it BECAUSE its beautiful.
Sometimes a garden grows too many weeds and then you have to get in there and prune and pull and dig and do some serious work. But sometimes you can sit back with your coffee and just enjoy the beauty.
I realize that I have expected too much of others. I have expected them to be mature. I have expected them to LOVE ME. I have expected them to have to know me. I have expected them to want to have a relationship with me that extended beyond the hobby that we met in. And you know what-- those were MY expectations. And if I peel away MY expectations I can peel away pain and hurt and any feelings of being rejected and realize that they were simply being human. And I can also realize that they were perhaps not a good fit for me. Because I DESERVE a good fit for me. I really do. And the people that I am friends with in return can have the same in return.
Nice snuggly good fits.
I know that being ill makes me more needy. I have more needs. I have more moods. I have less TIME to give to others. I have more physical demands and more fears and more worries. And quite frankly - right now- I have less CONTROL over my body, my space, my finances, my environment, who I am, or where I'll be or where I'll end up.
What I want - a snug house, a fulfilling job, a lover, all those things are simply ASKING TOO MUCH right now. Even though I don't want them to be. I would love each one of those things. I really would. I long for each one of them. I find the idea of gaining even one of them highly dubious right now-- but I still have to march on - being a good human, doing what I *can* do. Volunteering when I can, loving when and where I can. Smiling and laughing when I can. And when I cannot - then doing something else.
Right now - in my heart - I am lonely and I long for health, stability, reciprocity, relationship, good sex, creativity, a high functioning body and brain. Simple things really.
Simple things.
Monday, March 29, 2010
Thursday, March 25, 2010
Act Now - BOOM!
New treatment plan is made.
I begin tomorrow.
I don't even want to think about it -- but I shall begin.
ONWARD. Ho!
Lots of things in my blood are much much better! yay! *confetti*
Meanwhile - some things are getting worse and the lupus is creating more lesions in my brain... it is problematic. We must do something now or it will only get worse from here. It is a time to act or die. I prefer to act and go into remission.
GO.
I may be a fucking coward and crybaby - but no one will say I didn't go fighting and kicking when it came to doing everything I could. I'd love to live a long time and tell you myself. Day by day. It is all any of us have anyway.
OK. GO.
I begin tomorrow.
I don't even want to think about it -- but I shall begin.
ONWARD. Ho!
Lots of things in my blood are much much better! yay! *confetti*
Meanwhile - some things are getting worse and the lupus is creating more lesions in my brain... it is problematic. We must do something now or it will only get worse from here. It is a time to act or die. I prefer to act and go into remission.
GO.
I may be a fucking coward and crybaby - but no one will say I didn't go fighting and kicking when it came to doing everything I could. I'd love to live a long time and tell you myself. Day by day. It is all any of us have anyway.
OK. GO.
Tuesday, March 23, 2010
Break Down... Finding Peace... Nerves
This is me having a fucking break down. I'm having it in a very controlled manner because I don't flip out very often. I've flipped out exactly four times in my life. Each time was really powerful in retrospect really awesome (like a thunderstorm too close) to me because I COULD.
So - I'm having a meltdown inside my head... the tension sends little sizzles down the side of my head and face and down my arms and it makes it hard to breathe. I'm completely constipated. Oh - the jour du jour.
I'm lashing out right now. Nothing makes me happy. Nothing. I'm cranky. I'm sad. I'm wretched. I'm terrified. I'm absolutely terrified about my impending doctors apt.
Meanwhile -- I'm out of energy - COMPLETELY OUT. I have none. So when I HAVE to draw up energy- I'm drawing up the only thing I can find in excess right now - fear and anger -- and I'm using it to get through my day.
I can feel it raining through my chest. I used my oxygen machine and it gave me a 2 day migraine because my lungs didn't want to function at a level that high.
I want to jump through my skin. I hate the wait. I know my treatment options and NONE OF THEM are what I want. I DON'T WANT ANY OF THIS. I don't want this life. I didn't ask for any of it.
And now the time has come and I have go to in and pull in my armor and suck it up and be strong Melissa - and brave Melissa - and just do what needs to be done - like I have have have my entire life.
And I will. I will I will again and again - like a wash cycle.
While people complain about politics and their hair and their fat and their facial hair, I and thousands like me - will go in and hear what we least want to hear - and face what we dread. And I want someone to hold me right now. I feel excessively needy right now - at a time when people are worn out by me. They're over it. How many fears can one annoying demanding woman face.
Aren't you dead yet? Holy fuck. Didn't they just boil you in oil last month???
I wanted to write an essay for a fellowship today so I can attempt to get some money - so I can promise myself I'll stay in school so I can TRY to get my dissertation done - so I can PRETEND I'm going to go into remission and have a fucking future and be a professor at some little community college and teach little pathetic students like me -- with no self esteem and a modicum of ability. That was me all along. And no one has EVER EVER had any faith in me - but I did it. I was white fucking trash people -- AND I DID IT. I've got masters degrees and fucking ABD and 2/3's of a dissertation... I can do this. I CAN make this happen even if I'm so sick I have to drag myself to hell to do it. BECAUSE I WANT TO DIE WITH A PHD. - Gah -- this fucking essay... I was geared up for it for the last month and so far only half of it is written. My whole life feels like a lie -- my entire body feels like a lie. I feel like a fabrication - as though every time I step through my door I'm mocking the existence of time and space -- FUCK YOU -- I'M NOT DEAD.
No I can't feel my left arm. Yes - I can the fingers work most of the time though. No I haven't shat in a few days -- FUCK YOU. I have no idea why my body does this.
I'm fucking terrified.
Terrified of dying, and more terrified of not -and of staying here and having no change at all and getting worse and worse and worse. This is no life. This is NO. LIFE.
I also hate when people tell me about Jesus like they're trying to convert me. If you want to talk about Jesus because it's YOUR story- great - I'm happy. If you want to convert me to YOUR belief system I find it annoying. I find it just as annoying as astrologers who tell me not to have fear or pain or sadness or anger but to have only love to be a "truly spiritual being." FUCK ALL THAT. Let me be who I am-- I know who I am inside -- I'm happy with my spirituality -- it's the only thing I AM at peace with. And you don't KNOW what I believe. So don't presume that your god and me aren't down just b/c I don't tell you about it all the time. Religious people irritate me - religions don't. I find prayer and spirituality and meditation quite calming right now... so put that in your pipe and smoke it.
I feel better now. I'm trying hard not to hang my highs and lows or expectations on ANYONE. People fail us. Life circumstances fail us. Health fails us. Just the same -- people can surprise us and bring us joy and comfort, circumstances can change and bring us happiness. And health can improve. I'm trying to focus on that.
When I'm trying to find peace - I go to this space - where I focus on me - owning a condo - we wee space big enough for me- having a beautiful space, a garden, a life I love - children, happiness, love, contentment... I try to imagine a life where I teach, produce, write, am a productive happy member of society. Where my body and my health and my mind all mesh beautifully... it is my resting meditation. I try to hold on to it - focus on it - like a future I can build in my mind.
I hate that I have a scary appointment coming up.
So - I'm having a meltdown inside my head... the tension sends little sizzles down the side of my head and face and down my arms and it makes it hard to breathe. I'm completely constipated. Oh - the jour du jour.
I'm lashing out right now. Nothing makes me happy. Nothing. I'm cranky. I'm sad. I'm wretched. I'm terrified. I'm absolutely terrified about my impending doctors apt.
Meanwhile -- I'm out of energy - COMPLETELY OUT. I have none. So when I HAVE to draw up energy- I'm drawing up the only thing I can find in excess right now - fear and anger -- and I'm using it to get through my day.
I can feel it raining through my chest. I used my oxygen machine and it gave me a 2 day migraine because my lungs didn't want to function at a level that high.
I want to jump through my skin. I hate the wait. I know my treatment options and NONE OF THEM are what I want. I DON'T WANT ANY OF THIS. I don't want this life. I didn't ask for any of it.
And now the time has come and I have go to in and pull in my armor and suck it up and be strong Melissa - and brave Melissa - and just do what needs to be done - like I have have have my entire life.
And I will. I will I will again and again - like a wash cycle.
While people complain about politics and their hair and their fat and their facial hair, I and thousands like me - will go in and hear what we least want to hear - and face what we dread. And I want someone to hold me right now. I feel excessively needy right now - at a time when people are worn out by me. They're over it. How many fears can one annoying demanding woman face.
Aren't you dead yet? Holy fuck. Didn't they just boil you in oil last month???
I wanted to write an essay for a fellowship today so I can attempt to get some money - so I can promise myself I'll stay in school so I can TRY to get my dissertation done - so I can PRETEND I'm going to go into remission and have a fucking future and be a professor at some little community college and teach little pathetic students like me -- with no self esteem and a modicum of ability. That was me all along. And no one has EVER EVER had any faith in me - but I did it. I was white fucking trash people -- AND I DID IT. I've got masters degrees and fucking ABD and 2/3's of a dissertation... I can do this. I CAN make this happen even if I'm so sick I have to drag myself to hell to do it. BECAUSE I WANT TO DIE WITH A PHD. - Gah -- this fucking essay... I was geared up for it for the last month and so far only half of it is written. My whole life feels like a lie -- my entire body feels like a lie. I feel like a fabrication - as though every time I step through my door I'm mocking the existence of time and space -- FUCK YOU -- I'M NOT DEAD.
No I can't feel my left arm. Yes - I can the fingers work most of the time though. No I haven't shat in a few days -- FUCK YOU. I have no idea why my body does this.
I'm fucking terrified.
Terrified of dying, and more terrified of not -and of staying here and having no change at all and getting worse and worse and worse. This is no life. This is NO. LIFE.
I also hate when people tell me about Jesus like they're trying to convert me. If you want to talk about Jesus because it's YOUR story- great - I'm happy. If you want to convert me to YOUR belief system I find it annoying. I find it just as annoying as astrologers who tell me not to have fear or pain or sadness or anger but to have only love to be a "truly spiritual being." FUCK ALL THAT. Let me be who I am-- I know who I am inside -- I'm happy with my spirituality -- it's the only thing I AM at peace with. And you don't KNOW what I believe. So don't presume that your god and me aren't down just b/c I don't tell you about it all the time. Religious people irritate me - religions don't. I find prayer and spirituality and meditation quite calming right now... so put that in your pipe and smoke it.
I feel better now. I'm trying hard not to hang my highs and lows or expectations on ANYONE. People fail us. Life circumstances fail us. Health fails us. Just the same -- people can surprise us and bring us joy and comfort, circumstances can change and bring us happiness. And health can improve. I'm trying to focus on that.
When I'm trying to find peace - I go to this space - where I focus on me - owning a condo - we wee space big enough for me- having a beautiful space, a garden, a life I love - children, happiness, love, contentment... I try to imagine a life where I teach, produce, write, am a productive happy member of society. Where my body and my health and my mind all mesh beautifully... it is my resting meditation. I try to hold on to it - focus on it - like a future I can build in my mind.
I hate that I have a scary appointment coming up.
Saturday, March 20, 2010
A Good Day - And A Wish
Wow - I had a great day! :) Took forever getting started - but once it did, it really picked up.
Lovely visit, lunch, a gift, time with someone I really like. Got to see a former student and met her sister. I realize that Sometimes my feelings of sadness and down are part of this illness. And I am feeling it a great deal. And b/c I do feel abandoned often. Because - as I said - you DO have to go through a great deal of THIS "alone." You have to face a great many fears alone. You have to realize that sometimes, try as you might, alienation happens, fears happen, life happens. And if you cannot go out into the world and present yourself the way you WANT to be and the way NORMAL people act - you will not be well loved for long.
Part of my longterm strategy has always been to spread a wide net and to know many people and not ever let people get to know me well. It worked. The minute I let people know me- it is like a wound is opened - they get to see that I cannot hold up to analysis or investigation. My body is not solid- my brain is not, my personality even -- quavers from funny to sad to needy to hostile depending on the day, the timing, how much rest I've had, how many drugs I've taken, etc. I'd love to pretend I didn't know -- but I'm aware. But usually- if you do'nt know me well- you do'nt notice it... you just don't.
But if you spend any amount of time wiht me-- you begin to hate it and with it YOU HATE ME.
At my core- I think you begin to find me both unlovable and pathetic. Even if you took the time to understand it - it's still hard to deal with. Which makes it even harder for me - and extrovert - to go out into the world - especially now that I'm fucking sick. It's so easy - when I'm not sick... my mind is stable - my personality doesn't shift as much - I'm far more solid... the lupus doesn't bang at me -- I can hold relationships for years and years...
But the moment I get sick, I try to hold on to the people I love - but every day is a new Melissa - every day is angry, mean, sad, needy, funny, ok, calm, and you never know who you're going to get. Besides, Melissa that you've KNOWN for years has been completely ok and self-sufficient and self-aware and is now suddenly struggling and in need of help. She forgets things, she's terrified, she might be paranoid... and hostile, she hates the world, she hates herself... she thinks everyone conspires against her.... and then the lupus cloud lifts... and then they ladle on more meds -- boom-- and of course, they make me more aggressive and angry- and so it's a cycle...
who knows? I fear my mind going. I dream of the day is goes into remission and my mind is back. I THINK I used to be more normal? But maybe it never has? Maybe that's why I've always pretended to be other than who I was. Maybe that's why I've ALWAYS worn such big masks and lied about my health. Maybe that's why journals and blogs and writing comes so easy- because others can so easily relate... in a way that truly getting to know ME doesn't work.
Because once you know me -- REALLY KNOW ME -- what will you do?
Today I had lunch with someone who promised me he wouldn't go away. He said, "I am scared too - just like everyone else, just like you - Melissa, but I'm not gonna run away." And I was crying, and I nodded. But I didn't believe him. But it didn't matter. Because even if I believe him or not - only time will tell. Time is always the test that proves our metal.
Meanwhile - *I* have loyalty that goes unmatched. I will love people even if my mind goes and even if I am difficult. My HEART goes unchanged. Inside of me doesn't not. My spirit loves eternally. And that is why I have hope that I will go into remission and not forget who I am or how to love and be loved FOR REAL.
I love my animals. I keep my cat around. She's 19 and she won't die. LOL She's on insulin shots 2-3 times a day- and I keep giving them to her. Each of my pets require my love and attention and I give it to them. I LOVE THEM. Their needs are never too much for me. I do not FORGET how to love. They don't seem to mind my personality changes or my patterns or when I act differently. They just love me. And then we have our routines. They are happy if I stay in bed all day. They are fine with me.
Today I saw an former student who was THRILLED to introduce me to her sister. And it made me so happy. SO HAPPY. I was so glad to be introduced as someone who "changed her life - changed how she thought - made her love school again...." It means - at least in a small way, I have helped the world... we had a nice catch up. We laughed. I smiled and laughed and forgot that I might be an unlovable asshole for a bit. I realized that sometimes we are all unlovable assholes - and at least I don't TRY TO BE. I really don't. I don't want to be a victim- but lupus really does eat away at my brain right now-- it changes me - how I think - react- talk... I'm terrified. I'm so glad my dad is here with me now. Because when I see him every day- it reminds me that I have family - and I remember my childhood, and my name, and my history, and it gives me these links -- and for a few little breaths each day I can ignore the creepy crawly sensastions down my arms and my body and the feelings of water and pressure in my heart and lungs where it's heart to breathe - and the pain my ass where I shat a brick and it ripped my poor bum.
And I can remember that I really am a person - a real person - who truly MUST be worth loving and who REALLY LOVES. And I hold on to that. It makes me have the courage to keep trying. Because with every failure I give up a little more. And that's not like me. But I don't think I can take many more failures on this grand of scale where so many people hate me en masse and with so much ferocity. Because they don't really hate ME - they hate what's happening to me - they don't know it. But I do. I hate it too. And I'm so terrified.
I wish I could tell them. But again -- they don't know. Most people in the world don't know about lupus except what they see on House. Or if you look it up - it says it's such an easily controlled disease - to stay away from the sun and take some ibuprofen. But the men and women I know who are living with lupus right now have so much courage and so much strength. This is no easy task. It gives us spin off diseases that most people would think were the worst-- and that we take as just one more thing to deal with. And we keep going. Oh - pff - cancer -- oh -- pfff - heart disease - oh -- pfff - a little pneumonia -- oh pff - more of this and more of that. And we keep going. Our lives keep going.
And we never know when it will end - only that it will end, sooner than everyone else's. And all we can hope is to make it worth more - and live more, and laugh more, and make it more meaningful and more powerful, and more exciting while we're here -- just to pack more into it NOW. I don't even need to be understood I guess - I just - I wish lupus had a cure and that I was cured of it. How's that. So I could be loved or hated for ME and not for the way I acted because of it and all the diseases and drugs that come from it.
That - is my wish.
Lovely visit, lunch, a gift, time with someone I really like. Got to see a former student and met her sister. I realize that Sometimes my feelings of sadness and down are part of this illness. And I am feeling it a great deal. And b/c I do feel abandoned often. Because - as I said - you DO have to go through a great deal of THIS "alone." You have to face a great many fears alone. You have to realize that sometimes, try as you might, alienation happens, fears happen, life happens. And if you cannot go out into the world and present yourself the way you WANT to be and the way NORMAL people act - you will not be well loved for long.
Part of my longterm strategy has always been to spread a wide net and to know many people and not ever let people get to know me well. It worked. The minute I let people know me- it is like a wound is opened - they get to see that I cannot hold up to analysis or investigation. My body is not solid- my brain is not, my personality even -- quavers from funny to sad to needy to hostile depending on the day, the timing, how much rest I've had, how many drugs I've taken, etc. I'd love to pretend I didn't know -- but I'm aware. But usually- if you do'nt know me well- you do'nt notice it... you just don't.
But if you spend any amount of time wiht me-- you begin to hate it and with it YOU HATE ME.
At my core- I think you begin to find me both unlovable and pathetic. Even if you took the time to understand it - it's still hard to deal with. Which makes it even harder for me - and extrovert - to go out into the world - especially now that I'm fucking sick. It's so easy - when I'm not sick... my mind is stable - my personality doesn't shift as much - I'm far more solid... the lupus doesn't bang at me -- I can hold relationships for years and years...
But the moment I get sick, I try to hold on to the people I love - but every day is a new Melissa - every day is angry, mean, sad, needy, funny, ok, calm, and you never know who you're going to get. Besides, Melissa that you've KNOWN for years has been completely ok and self-sufficient and self-aware and is now suddenly struggling and in need of help. She forgets things, she's terrified, she might be paranoid... and hostile, she hates the world, she hates herself... she thinks everyone conspires against her.... and then the lupus cloud lifts... and then they ladle on more meds -- boom-- and of course, they make me more aggressive and angry- and so it's a cycle...
who knows? I fear my mind going. I dream of the day is goes into remission and my mind is back. I THINK I used to be more normal? But maybe it never has? Maybe that's why I've always pretended to be other than who I was. Maybe that's why I've ALWAYS worn such big masks and lied about my health. Maybe that's why journals and blogs and writing comes so easy- because others can so easily relate... in a way that truly getting to know ME doesn't work.
Because once you know me -- REALLY KNOW ME -- what will you do?
Today I had lunch with someone who promised me he wouldn't go away. He said, "I am scared too - just like everyone else, just like you - Melissa, but I'm not gonna run away." And I was crying, and I nodded. But I didn't believe him. But it didn't matter. Because even if I believe him or not - only time will tell. Time is always the test that proves our metal.
Meanwhile - *I* have loyalty that goes unmatched. I will love people even if my mind goes and even if I am difficult. My HEART goes unchanged. Inside of me doesn't not. My spirit loves eternally. And that is why I have hope that I will go into remission and not forget who I am or how to love and be loved FOR REAL.
I love my animals. I keep my cat around. She's 19 and she won't die. LOL She's on insulin shots 2-3 times a day- and I keep giving them to her. Each of my pets require my love and attention and I give it to them. I LOVE THEM. Their needs are never too much for me. I do not FORGET how to love. They don't seem to mind my personality changes or my patterns or when I act differently. They just love me. And then we have our routines. They are happy if I stay in bed all day. They are fine with me.
Today I saw an former student who was THRILLED to introduce me to her sister. And it made me so happy. SO HAPPY. I was so glad to be introduced as someone who "changed her life - changed how she thought - made her love school again...." It means - at least in a small way, I have helped the world... we had a nice catch up. We laughed. I smiled and laughed and forgot that I might be an unlovable asshole for a bit. I realized that sometimes we are all unlovable assholes - and at least I don't TRY TO BE. I really don't. I don't want to be a victim- but lupus really does eat away at my brain right now-- it changes me - how I think - react- talk... I'm terrified. I'm so glad my dad is here with me now. Because when I see him every day- it reminds me that I have family - and I remember my childhood, and my name, and my history, and it gives me these links -- and for a few little breaths each day I can ignore the creepy crawly sensastions down my arms and my body and the feelings of water and pressure in my heart and lungs where it's heart to breathe - and the pain my ass where I shat a brick and it ripped my poor bum.
And I can remember that I really am a person - a real person - who truly MUST be worth loving and who REALLY LOVES. And I hold on to that. It makes me have the courage to keep trying. Because with every failure I give up a little more. And that's not like me. But I don't think I can take many more failures on this grand of scale where so many people hate me en masse and with so much ferocity. Because they don't really hate ME - they hate what's happening to me - they don't know it. But I do. I hate it too. And I'm so terrified.
I wish I could tell them. But again -- they don't know. Most people in the world don't know about lupus except what they see on House. Or if you look it up - it says it's such an easily controlled disease - to stay away from the sun and take some ibuprofen. But the men and women I know who are living with lupus right now have so much courage and so much strength. This is no easy task. It gives us spin off diseases that most people would think were the worst-- and that we take as just one more thing to deal with. And we keep going. Oh - pff - cancer -- oh -- pfff - heart disease - oh -- pfff - a little pneumonia -- oh pff - more of this and more of that. And we keep going. Our lives keep going.
And we never know when it will end - only that it will end, sooner than everyone else's. And all we can hope is to make it worth more - and live more, and laugh more, and make it more meaningful and more powerful, and more exciting while we're here -- just to pack more into it NOW. I don't even need to be understood I guess - I just - I wish lupus had a cure and that I was cured of it. How's that. So I could be loved or hated for ME and not for the way I acted because of it and all the diseases and drugs that come from it.
That - is my wish.
Thursday, March 18, 2010
Feelings Right Now
This week is a scary week for me.
Today was a rough day for me.
I got a massage and that helped... the human touch. I'm so glad pops is down here. He's helping out making me feel connected and that helps.
The appointment is wearing on me. THE appointment. I'm worried that the doc will say, "let's wait and see a few more months." As they so often do-- as though a few more months will be miraculous. And I feel sick now. Sicker than ever. Though with lupus you do - And sometimes you're not THAT sick - you just feeeeeel sick. And sometimes you ARE that sick. and you don't even know it. Like the time I had strep throat, an ear infection in both ears and a sinus infection and couldnt tell because I was just that sick regularly...
Meanwhile - I'm worried that she'll slam me into MOAR chemo MOAR steriods and MOAR MOAR MOARE of everything and I'm TERRIFIED of that too. Of doing nothing and of FULL ahead. Everything scares me. I'm afraid of dying and I'm afraid of sitting here dying. I am dying. This sucks.
One thing that is really making me sadder than ever is that I thought people would be nicer - I just did. I though more people would just open their arms and be sweeter all the time when you got really sick. And they're not. Most people are "down to earth" like - let's not make a big deal out of it.. you're walking you must be ok. And some people are hateful - like WHY ARE YOU WASTING MY AIR with your sickness ... and most of my friends that I love - really love have disappeared. And I TRY SO HARD not to let it wear on me I try so hard. But they are gone.
The life that i had every wednesday to make myself have a schedule - is gone. I feel so void now -- my schedule is gone. I'm sad. I'm grieving it. It's a loss. And I"m afraid. People are mean - meaner than I ever wanted to acknowledge.
Just like in grade school when people would say, "Hey Melissa- let's all have 3 pony tail day" and I'd be they only fucktard to show up with 3 pony tails and they other girls would be like "Oops- I forgot" and I'd say, "awww- that's ok." and I NEVER REALIZED -- not until I was well into my late 20's that they were PICKING ON ME. I never realized they were being mean to me. I was blissfully ignorant. THANKFULLY. I was BLISSFULLY UNAWARE that they were picking on me. THANK ALL THE GODS.
i am so glad that I didn't realize. I am so sorry that I know now that people are mean and afraid and selfish and self-absorbed. I wish I could be that old old child again - who thinks everyone is just forgetful or awww chucks guys - we'll try again. I wish that blissful ignorance could creep into me again. Oh that i could - just close my eyes and not be hurt.
Oh for every cake I've baked and hospital I've visited - now that I need FRIENDS THE MOST - my hand held the most- WHEN I AM THE MOST AFRAID-- I wish I didn't have to know that people who I have invested the most of my self in loving - a bad investment.
Because now - when I need TRULY NEED - to have people around to love me - dare I say FRIENDS -- *FRIENDS* -- People I have TRULY BEEN FRIENDS TO. - given when they needed me - or tried - and asked when I was in need -and I had lots of needs this last year, well,
I'm sad tonight.
I'm sad. I'm glad I got a massage. I'm glad my dad is here. And I'm afraid tonight. And maybe that fear will go away. I hope it does. I will say the serenity thing. I will smoke some pot. I will drink some water. I will take more pain meds. I will invest in people who seem to be loving. I will embrace every single person who opens their arms to me and be fucking grateful for it.
And right now -- I will allow that THIS EMOTION is the one I'm feeling - afraid and sad.
And it is ok.
Today was a rough day for me.
I got a massage and that helped... the human touch. I'm so glad pops is down here. He's helping out making me feel connected and that helps.
The appointment is wearing on me. THE appointment. I'm worried that the doc will say, "let's wait and see a few more months." As they so often do-- as though a few more months will be miraculous. And I feel sick now. Sicker than ever. Though with lupus you do - And sometimes you're not THAT sick - you just feeeeeel sick. And sometimes you ARE that sick. and you don't even know it. Like the time I had strep throat, an ear infection in both ears and a sinus infection and couldnt tell because I was just that sick regularly...
Meanwhile - I'm worried that she'll slam me into MOAR chemo MOAR steriods and MOAR MOAR MOARE of everything and I'm TERRIFIED of that too. Of doing nothing and of FULL ahead. Everything scares me. I'm afraid of dying and I'm afraid of sitting here dying. I am dying. This sucks.
One thing that is really making me sadder than ever is that I thought people would be nicer - I just did. I though more people would just open their arms and be sweeter all the time when you got really sick. And they're not. Most people are "down to earth" like - let's not make a big deal out of it.. you're walking you must be ok. And some people are hateful - like WHY ARE YOU WASTING MY AIR with your sickness ... and most of my friends that I love - really love have disappeared. And I TRY SO HARD not to let it wear on me I try so hard. But they are gone.
The life that i had every wednesday to make myself have a schedule - is gone. I feel so void now -- my schedule is gone. I'm sad. I'm grieving it. It's a loss. And I"m afraid. People are mean - meaner than I ever wanted to acknowledge.
Just like in grade school when people would say, "Hey Melissa- let's all have 3 pony tail day" and I'd be they only fucktard to show up with 3 pony tails and they other girls would be like "Oops- I forgot" and I'd say, "awww- that's ok." and I NEVER REALIZED -- not until I was well into my late 20's that they were PICKING ON ME. I never realized they were being mean to me. I was blissfully ignorant. THANKFULLY. I was BLISSFULLY UNAWARE that they were picking on me. THANK ALL THE GODS.
i am so glad that I didn't realize. I am so sorry that I know now that people are mean and afraid and selfish and self-absorbed. I wish I could be that old old child again - who thinks everyone is just forgetful or awww chucks guys - we'll try again. I wish that blissful ignorance could creep into me again. Oh that i could - just close my eyes and not be hurt.
Oh for every cake I've baked and hospital I've visited - now that I need FRIENDS THE MOST - my hand held the most- WHEN I AM THE MOST AFRAID-- I wish I didn't have to know that people who I have invested the most of my self in loving - a bad investment.
Because now - when I need TRULY NEED - to have people around to love me - dare I say FRIENDS -- *FRIENDS* -- People I have TRULY BEEN FRIENDS TO. - given when they needed me - or tried - and asked when I was in need -and I had lots of needs this last year, well,
I'm sad tonight.
I'm sad. I'm glad I got a massage. I'm glad my dad is here. And I'm afraid tonight. And maybe that fear will go away. I hope it does. I will say the serenity thing. I will smoke some pot. I will drink some water. I will take more pain meds. I will invest in people who seem to be loving. I will embrace every single person who opens their arms to me and be fucking grateful for it.
And right now -- I will allow that THIS EMOTION is the one I'm feeling - afraid and sad.
And it is ok.
Saturday, March 13, 2010
Good, The Bad, The Ugly
I have really genuinely nice things happening in my life right now. Like - really strong support groups, beautiful people, amazing beautiful powerful people. You do need to be strong. And you stand there along this path being born alone and dying alone -- but you know what - you do NOT need to get the death sentence alone....
I volunteered at a children's hospital doing some improv with someone I really liked and I'm reconnecting with some people I've missed... and I'm letting tons of people go that honestly just REALLY don't work for me. I've buried the past in the form of a voodoo doll that a former friend gave me.
People have been SO KIND lately. SO KIND. In an astounding way. I stop sometimes and look around and wonder if the world can really contain so much love and if it can really all be directed at me. Because there are plenty of times when I get sad and down and I FORGET that people are being kind. And I get in pain and I get lonely and I FORGET the kindnesses that people are doing for me. And people do kind in their own way.
And-- Vi said it best -- we often focus on the people who IGNORE US rather than the people who are calling us... its as though we are burning our own little wings in the flames of pain and misery rather than basking in the sunlight of love and joy and reciprocity. And sometimes the people calling me are being kind to me. And sometimes those calls are people needy for my friendship and kindness... and that's cool too. I have a lot of love to give. And I have been BOTH of those people on the end of the phone.... Meanwhile-- I'm trying to be the woman who focuses on the people calling and not on the people ignoring my calls.
I'm focusing on a new honesty... and it's WORKING... even if it's painful it's working. Not having money to pay my medical bills doesn't make me a bad person. It makes me a poor person who is out of work - a student, and waiting for my disability to kick in - but it doesn't make me bad. I'm calling my health care bills and telling them whats up - but I'm not LYING about it etc... but I'm not being a bad person or hiding or running away from it. I'm doing what I can. And it is making me less stressed. When I"m doing my BEST- then I'm doing my best.
Same as with my health... I have an anal fissure. Came from the trusty new drugs they've got me on... Ripped me new one... Literally. ouch. All I'm saying. I have a trusty new prescription ointment and laxatives. That's it. Wait it out 4-6 weeks and it should heal. OUCH. And ouch it is. I went from shooting liquid poo to pooping bricks over night. Sooooo confusing for my poor pooper. meanwhile... I'm doing my best... I'm eating the best I can - fruits and veggies and fiber and drinking water by the sonic fuck ton....
Anyway-- I have a renewed and restored hope. I just do. And even if it is for today for right now -- I'm taking it. Cutting ties with the old improv team has actually made me feel like a healthier person. I took a month off for my health and it ended up feeling like I have more energy, more honesty, and wings because I am no longer having to struggle to pretend I'm not suffering with people who don't CARE or don't show me empathy or kindness... and when I was hanging out with someone I genuinely like - today - he was so kind and so sweet today- like - next time I'll drive -- I saw what a REAL person does and how REAL compassion and REAL kindnesses work... and I realized that I self-blame for OTHER PEOPLE'S lack too often.
I have done it in EVERY relationship - romantic or otherwise my entire life. And if I take the failure to thrive from my shoulders and just call it "not a good fit" and don't place blame at all... it feels better... and I see a nice fit - where someone says, call me when you drive TWO BLOCKS to get home. And I smile at the mother hen behavior because I recognize it too- I feel cherished and I like it. I like it.
I have a doc appt coming up still and i'm nervous. Nervous for the treatment and the lack of treatments... just yikes. trying to breathe through the what ifs etc... anyway-- no more worried than yikes i have to poop tomorrow and it will hurt and i'll bleed. isn't that funny.
ahh life. you fickle beast.
I volunteered at a children's hospital doing some improv with someone I really liked and I'm reconnecting with some people I've missed... and I'm letting tons of people go that honestly just REALLY don't work for me. I've buried the past in the form of a voodoo doll that a former friend gave me.
People have been SO KIND lately. SO KIND. In an astounding way. I stop sometimes and look around and wonder if the world can really contain so much love and if it can really all be directed at me. Because there are plenty of times when I get sad and down and I FORGET that people are being kind. And I get in pain and I get lonely and I FORGET the kindnesses that people are doing for me. And people do kind in their own way.
And-- Vi said it best -- we often focus on the people who IGNORE US rather than the people who are calling us... its as though we are burning our own little wings in the flames of pain and misery rather than basking in the sunlight of love and joy and reciprocity. And sometimes the people calling me are being kind to me. And sometimes those calls are people needy for my friendship and kindness... and that's cool too. I have a lot of love to give. And I have been BOTH of those people on the end of the phone.... Meanwhile-- I'm trying to be the woman who focuses on the people calling and not on the people ignoring my calls.
I'm focusing on a new honesty... and it's WORKING... even if it's painful it's working. Not having money to pay my medical bills doesn't make me a bad person. It makes me a poor person who is out of work - a student, and waiting for my disability to kick in - but it doesn't make me bad. I'm calling my health care bills and telling them whats up - but I'm not LYING about it etc... but I'm not being a bad person or hiding or running away from it. I'm doing what I can. And it is making me less stressed. When I"m doing my BEST- then I'm doing my best.
Same as with my health... I have an anal fissure. Came from the trusty new drugs they've got me on... Ripped me new one... Literally. ouch. All I'm saying. I have a trusty new prescription ointment and laxatives. That's it. Wait it out 4-6 weeks and it should heal. OUCH. And ouch it is. I went from shooting liquid poo to pooping bricks over night. Sooooo confusing for my poor pooper. meanwhile... I'm doing my best... I'm eating the best I can - fruits and veggies and fiber and drinking water by the sonic fuck ton....
Anyway-- I have a renewed and restored hope. I just do. And even if it is for today for right now -- I'm taking it. Cutting ties with the old improv team has actually made me feel like a healthier person. I took a month off for my health and it ended up feeling like I have more energy, more honesty, and wings because I am no longer having to struggle to pretend I'm not suffering with people who don't CARE or don't show me empathy or kindness... and when I was hanging out with someone I genuinely like - today - he was so kind and so sweet today- like - next time I'll drive -- I saw what a REAL person does and how REAL compassion and REAL kindnesses work... and I realized that I self-blame for OTHER PEOPLE'S lack too often.
I have done it in EVERY relationship - romantic or otherwise my entire life. And if I take the failure to thrive from my shoulders and just call it "not a good fit" and don't place blame at all... it feels better... and I see a nice fit - where someone says, call me when you drive TWO BLOCKS to get home. And I smile at the mother hen behavior because I recognize it too- I feel cherished and I like it. I like it.
I have a doc appt coming up still and i'm nervous. Nervous for the treatment and the lack of treatments... just yikes. trying to breathe through the what ifs etc... anyway-- no more worried than yikes i have to poop tomorrow and it will hurt and i'll bleed. isn't that funny.
ahh life. you fickle beast.
Wednesday, March 10, 2010
Living More Through Dying
Remember that Buddhist meditation where you imagine your body dying and then decaying and turning into dust. I realize now that we are all walking testaments to this in our own way.
When I went to therapy and told my therapist about my former improv team BLOWING A GASKET about me taking a month off and how I haven't been relating well to them because I've been reacting with impatience to them -- and how they took the time to BLOW OFF STEAM VIA E-MAIL to me... she reminded me that I would do it IN WORKSHOP - face to face. And that they would not respond to me as a person. We hired a coach to deal with us and mediate those things. We are all humans. They could have talked with me or told the coach - NOPE. They could have discussed it with the owner - and he with me. NOPE. Instead - they wait till *I* got fed up with the frustration and lack of communication and the distance and THEN they *kick kick kick* and told me how much they didnt trust me etc etc. And it was only 2-3 people who did. The rest lurked in back - standing back - not joining in - as was their way from the beginning.
Meanwhile... I remember when I was healing making birthday cakes for my teammates FROM SCRATCH - and celebrating their lives - visiting them in hospitals and bolstering them in their hard times. I remember being a GOOD HUMAN TO THEM when I was fully capable. And now - when I am losing my grip on my own health and in some ways on my own "reality"-- I was reaching out out out to them - but only 2 of them were reaching back to me. So-- that doesn't make a TEAM.
So -- my therapist pointed out that reciprocating RELATIONSHIPS required things to go BOTH WAYS. And that I cannot blame myself if only a few people on a team are healthy and reciprocating. And I cannot blame myself for being unhealthy and difficult. I knew when I was gone too far - I took time off - I tried my very best and knew when to step back.
It made me feel better.
She made me feel less like I was a jerk or an asshole and more like *I* am a healthy person. For at LEAST putting myself out there and reaching out and ASKING for my need to be met with people I was 100% into loving when I was able. Additionally- I sent out a few thank you e-mails to people who DID go out of their way for me. And I'm trying to recognize people who now DO love me - Like you Leslie - who took time out of your busy lives to be sweet with your prayer group and made me feel bolstered and loved and prayed for. And people who drop encouraging lines. Vi who came by with a sonic fuck ton of food and love. :)
Life is NOT all sad and woe. Life is difficult and life can be alone. And for EXTROVERTS - life can be hampering when you are ill. But now that dad is here - I can have a little more attention and company if only because he sits in the same room and reads with me. And it gives me new reason to believe in god -- because I truly was starting to die inside... especially when my only social outlet was improv... I would nap and sleep and rest up after my hospital and doctors -- and go in -- and they would fucking HATE ME because I did'nt have it and couldn't bring it. yet -- THEY WERE ALL I HAD.
And now I have my dad. And I have a few more friends who are coming out - taking me out when they can, stopping by for visits, talking on the phone... and I feel more alive now. I was able to volunteer for a 40 minute children's hospital day the other day and it lifted my spirits so much. I'm going to volunteer at a nursing home at the end of the month and again -- same thing. I'm SO HAPPY to do it. I LOVE being a good person. Even if I die tomorrow - if I have made other people feel better and less unhappy -- I have done more and given more than I have taken.
yes- I focus on myself and talk about myself. but-- it is a human trait and a human condition. I am no saint. So do YOU. yes - I am a thinky person. yes - I enjoy my life OUTWARDLY. And - I an fucking grateful that my dad is here. I am so thankful that I have someone here helping me right now. I have no idea what I would do without him. I have no idea how I was making it before. I really don't.
So - life has a way of lifting now... Day by day by day we go... and day by day by day I go... I'm doing what needs to be done. Sometimes with less cognitive function and sometimes with more static and sometimes with lots of pain and sometimes with lots of medical assistance...
But - I'll tell you what-- I'm trying to remember NOT to freak out - b/c freaking out isnt' helpful. I'm trying to remember to chill. I'm trying to remember that for all the unkind and shitty things people do - I have the equal ability to do the same and probably have at some point. And I have the ability to breathe it outward and say - FUCK YOUR SHIT YOU JACKHOLE -- IMMA BLOW THIS POPSICLE STAND.
Anyway-- I have to deal with some more bureaucratic paperwork. But I have been successful today. Only two seizures! wohoo!!! I suppose I'll have to up my medications soon if they get worse... I just fucking HATE taking that crap. It makes Melissa a dull boy. *knife knife knife* *crazeee look*
When I went to therapy and told my therapist about my former improv team BLOWING A GASKET about me taking a month off and how I haven't been relating well to them because I've been reacting with impatience to them -- and how they took the time to BLOW OFF STEAM VIA E-MAIL to me... she reminded me that I would do it IN WORKSHOP - face to face. And that they would not respond to me as a person. We hired a coach to deal with us and mediate those things. We are all humans. They could have talked with me or told the coach - NOPE. They could have discussed it with the owner - and he with me. NOPE. Instead - they wait till *I* got fed up with the frustration and lack of communication and the distance and THEN they *kick kick kick* and told me how much they didnt trust me etc etc. And it was only 2-3 people who did. The rest lurked in back - standing back - not joining in - as was their way from the beginning.
Meanwhile... I remember when I was healing making birthday cakes for my teammates FROM SCRATCH - and celebrating their lives - visiting them in hospitals and bolstering them in their hard times. I remember being a GOOD HUMAN TO THEM when I was fully capable. And now - when I am losing my grip on my own health and in some ways on my own "reality"-- I was reaching out out out to them - but only 2 of them were reaching back to me. So-- that doesn't make a TEAM.
So -- my therapist pointed out that reciprocating RELATIONSHIPS required things to go BOTH WAYS. And that I cannot blame myself if only a few people on a team are healthy and reciprocating. And I cannot blame myself for being unhealthy and difficult. I knew when I was gone too far - I took time off - I tried my very best and knew when to step back.
It made me feel better.
She made me feel less like I was a jerk or an asshole and more like *I* am a healthy person. For at LEAST putting myself out there and reaching out and ASKING for my need to be met with people I was 100% into loving when I was able. Additionally- I sent out a few thank you e-mails to people who DID go out of their way for me. And I'm trying to recognize people who now DO love me - Like you Leslie - who took time out of your busy lives to be sweet with your prayer group and made me feel bolstered and loved and prayed for. And people who drop encouraging lines. Vi who came by with a sonic fuck ton of food and love. :)
Life is NOT all sad and woe. Life is difficult and life can be alone. And for EXTROVERTS - life can be hampering when you are ill. But now that dad is here - I can have a little more attention and company if only because he sits in the same room and reads with me. And it gives me new reason to believe in god -- because I truly was starting to die inside... especially when my only social outlet was improv... I would nap and sleep and rest up after my hospital and doctors -- and go in -- and they would fucking HATE ME because I did'nt have it and couldn't bring it. yet -- THEY WERE ALL I HAD.
And now I have my dad. And I have a few more friends who are coming out - taking me out when they can, stopping by for visits, talking on the phone... and I feel more alive now. I was able to volunteer for a 40 minute children's hospital day the other day and it lifted my spirits so much. I'm going to volunteer at a nursing home at the end of the month and again -- same thing. I'm SO HAPPY to do it. I LOVE being a good person. Even if I die tomorrow - if I have made other people feel better and less unhappy -- I have done more and given more than I have taken.
yes- I focus on myself and talk about myself. but-- it is a human trait and a human condition. I am no saint. So do YOU. yes - I am a thinky person. yes - I enjoy my life OUTWARDLY. And - I an fucking grateful that my dad is here. I am so thankful that I have someone here helping me right now. I have no idea what I would do without him. I have no idea how I was making it before. I really don't.
So - life has a way of lifting now... Day by day by day we go... and day by day by day I go... I'm doing what needs to be done. Sometimes with less cognitive function and sometimes with more static and sometimes with lots of pain and sometimes with lots of medical assistance...
But - I'll tell you what-- I'm trying to remember NOT to freak out - b/c freaking out isnt' helpful. I'm trying to remember to chill. I'm trying to remember that for all the unkind and shitty things people do - I have the equal ability to do the same and probably have at some point. And I have the ability to breathe it outward and say - FUCK YOUR SHIT YOU JACKHOLE -- IMMA BLOW THIS POPSICLE STAND.
Anyway-- I have to deal with some more bureaucratic paperwork. But I have been successful today. Only two seizures! wohoo!!! I suppose I'll have to up my medications soon if they get worse... I just fucking HATE taking that crap. It makes Melissa a dull boy. *knife knife knife* *crazeee look*
Friday, March 5, 2010
Fail Sauce
So - I guess failure IS an option. One I'm able to take frequently. The thing I HATE about failure is when I'm failing and I never KNEW I was.
I thought I was keeping my pain and my illness away from my improv team. I thought I was only going on my "good days." I would do SO MUCH to stuff it down for them... and it was a matter of doing too much for too little... because in the end it blew up on me. And in the end - there was too much negative energy and tension in the air anyway.
If I sat down for rest other people would say, "If you cannot come and give 100% -don't come." Yet- in another situation - on another team - I sit down, no one says a word.
It is so strange to me how MY perception of me and OTHER PEOPLE'S perceptions of me are so distorted. And I figure we meet somewhere in the middle. So I'm neither a failure nor an asshole... I'm neither 100% unlovable nor am I the hostile aggro whore they hate.
One thing I have noticed is that I do NOT like being hurt and working next to people who willingly hurt me. I don't keep on that face well. Not anymore.
One woman I REALLY LOVED - truly loved - took me aside and said, "I cannot be your friend anymore - I need to pull back and distance myself because I cannot watch you die." She was on BOTH of my improv teams. And I had to work and play with her 2-3 times a week. And it would gnaw away at me seeing her - and her act innocent like she didn't remove her friendship from me-- something that MEANT THE WORLD TO ME.
And no one knew. And it HURT ME deeply. And I can't get it back. It's like a break up. You cannot make you boyfriend or husband take you back. But then - you sometimes cannot work at the same job like nothing happened either. Meanwhile - here I am - on TWO improv teams - trying to deal with sickness, feeling awful, deal with some people who are kind and loving and some people I wouldn't let dogsit for me... and HER. And it all blew up.
And I'm VERY good at asking for my needs to be met and -- I'M FINE WHEN YOU ASK FOR YOUR NEEDS TO BE MET. But somehow on this particular team - people went from jovial bear hugs and hanging out to almost anger - and not just at me -- but certainly I didn't help- because my own inner focus made it hard for me to give a fuck what was happening in anyone else's life.
And so when I reach out - I do so i fear - clutching fear - terrified and saying all the wrong things - being mean - blowing shit up - and when my former team retaliated - the people who already told me they wanted distance b/c they didn't want to watch me die or the people who already took their distance-- they stood back...but the people who were angry and felt like taking a swipe-- they took them -- big bear swipes. And they told me how horrible I was -how selfish- how *insert anything jerky you can*....
And probably half of their insight was true. And probably half was false. And it didn't really matter - because at that point I had already said -- I'm going to take some time off because I'm not feeling like this is working... but it didn't matter -- they wanted to say what they wanted to say.
And -- didn't matter that I have TRIED HARD. Didn't matter that I have come through for the team over and over on my sickest days-- because sometimes what you give is never remembered. I truly believe that people - in your darkest and deepest hour of need become one of two things -- they become champions or they become assholes. Very very few become neutral. Some THINK the are neutral -- but those who THINK they are neutral are usually leaving you stand there flailing looking for hugs or looking for friendship.
This is a team of people who used to go out - we used to hang out -- we used to be FRIENDS. And the moment I got sick -BUT BEFORE I TOLD THEM I WAS SICK- they were sure to call me one by one - and tell me what a jerk i was being... how "down I was" and what a "bummer" was being on the team. And so - I decided it was time to either tell them i was sick - or quit the team. I had a hard time deciding.
It appears I made the wrong decision. My time would have been better spent writing my dissertation, resting, loving my dog and cats, moving home, vomiting etc. I call this weeds. You tend a garden and look down and find they are insidious weeds. Not everyone mind you -- one guy- he was my fucking knight in shining armor. I would call him and cry - and he would listen. And he got me through some REALLY DARK NIGHTS. And I am grateful to him. If I could have it my way I would have had an improv team of him and like 3 other people -- but I don't have it my way. Instead - I left the team on my own -- but they were sure to blow it up good so I make sure I NEVER COME BACK -- just in case I should have the bad sense to go into remission.
--
I also get this creeping sense around some people like... "are you still alive?" "Aren't you dead yet?" These are other negative thoughts. I try not to have them... I really do. It is why I haven't blogged for a bit. I try hard to bring the funny... but I know from deep pain and deep anger and deep failure and deep emotional loss are all the human ness. I AM FAR FROM PERFECT. I'm a giant fuck up. My brain is going one frazzly fiz-gig at a time. I know this.
My family has to look for dementia units just in case my kidneys outlive my brain. And I am DETERMINED that they will not. I'm just telling you - I will NOT lose my fucking mind first. It already happened 3 years ago - and everyone remembers but me. And they say, "Be happy you don't remember Melissa- because I do." And no-- I have VERY few friends from that time. It was too painful for them. And those who ARE my friends - they are good friends. But most do tread lightly. Central nervous systems are fragile. And it is a shame that my cognitive abilities and my brain-pan is so tenuous. I mean -- I have so many friends with fragile hearts (yes- me too) -- and who have water on their lungs (got it), or just have shitty kidneys (here)... but why my fucking brain... I hate that my moods and my ability to think and my memory, and all the things that make ME - ME... my personality-- all of MEEE go away -- like alzheimers... and I take fucking dementia and alzheimers medications. It's so shitty and unfair. And I want so badly to ka-blooey my brains out... but I keep holding on to this treatment plan... because IF -- IF we can get this shit into remission -- I can hold on- hold on to ME.
And there is always this thin line I'll walk - as always-- that I'll be the lost soul... the distant look -- the empty eyes -- the shining star who once was and is no more.. and yes-- it is why I feel so badly the need to get it allll out now. And why the more I hear people tell me what a fucking jerk I am -- I BELIEVE THEM. And it scares me. It fucking scares me. It's one less piece of me I have to hold on to.
And the less relationship I have -- the less of Melissa there to love to know and to remember. Till the time I die -- no one will even come to say goodbye -- because I'll have been dead inside my fucking brain for sooo many years. And that is what I'm mourning and afraid of. That is what I fear. That is what tears at me. And so -- all those mean people who are saying, "you're a jerk Melissa" yes it breaks my heart -- but my head hurts and my throat is full of sores and my ass is full of hemorrhoids from the liquid poo to the bricks of shit -- that my body just cannot decide from one day to the next we're having... and I'm afraid. I'm so afraid -- not that I'm a jerk -- but that the REAL TRUE MELISSA IS GONE. Gone. And that every day my brain is a little less a little less - till my parents will be feeding me apple sauce and baby food - and NO ONE WILL HAVE THE MERCY TO FUCKING KILL ME. And everyone will just shake their head and tsk tsk.
Oh that I were a little bit of a jerk than to lose the real beautiful Melissa that I KNOW I truly am. Meanwhile-- I miss my champions - because I haven't had one of those for a while. I've been too jerky and too gone for too long. Once you're sick sick you tend to use them up.
Even if I do go into remission - I'll NEVER stop having lupus. And the threat of it will hover over my head - like an axe ready to fall.
--
I want to do a one woman show- with 5 women's stories -- and I don't want to tell my own... only b/c my own story seems so pathetic and stupid and retarded and whiney. And what's the point. I'll just sit in a rocker and stair out at the world and pee myself (neurogenic bladder) and drool a bit. And have people remember who I used to be. And maybe - MAYBE if I'm VERY LUCKY-- very lucky-- I'll code then and there and god will have some fucking mercy for a change.
The other stories-- now those stories are beautiful.
I'm just a jerk. And everyone hates me. And I'm horrible and unlovable. And people need to take "distance so they don't watch me die."
Tomorrow I have to go be funny. And I've always found it my job to be funny and kind. Because there are so many tears and so much pain. I've always found it my job to catch people in the eye and make them laugh -- because EVERYONE ELSE will catch them and make them feel bad about themselves. Somewhere along the way I guess I fell down. But tomorrow I get a 2nd chance to at least be funny for a few minutes. And then Monday I get to go to a children's hospital and be funny for a 45 minutes -same thing. Every day- new chance to make a difference.
Maybe I'll never be good at REAL relationships... maybe I wasn't put on the earth to connect solidly with people... maybe I'm here to flit like a butterfly and be lonely but funny. I don't want that. I want real solid relationships and honesty and connection. But first - I have to know I'm not gonna have brain blowups and turn into a fucking alzheimers patient on them.
My spirit is dampened. But I promised Vi I'd write tonight anyway. Thank you for the kindness and the visit. I am not a failure. I am the joy that I give and the joy that I receive. And I have done both even if I have failed some.
I thought I was keeping my pain and my illness away from my improv team. I thought I was only going on my "good days." I would do SO MUCH to stuff it down for them... and it was a matter of doing too much for too little... because in the end it blew up on me. And in the end - there was too much negative energy and tension in the air anyway.
If I sat down for rest other people would say, "If you cannot come and give 100% -don't come." Yet- in another situation - on another team - I sit down, no one says a word.
It is so strange to me how MY perception of me and OTHER PEOPLE'S perceptions of me are so distorted. And I figure we meet somewhere in the middle. So I'm neither a failure nor an asshole... I'm neither 100% unlovable nor am I the hostile aggro whore they hate.
One thing I have noticed is that I do NOT like being hurt and working next to people who willingly hurt me. I don't keep on that face well. Not anymore.
One woman I REALLY LOVED - truly loved - took me aside and said, "I cannot be your friend anymore - I need to pull back and distance myself because I cannot watch you die." She was on BOTH of my improv teams. And I had to work and play with her 2-3 times a week. And it would gnaw away at me seeing her - and her act innocent like she didn't remove her friendship from me-- something that MEANT THE WORLD TO ME.
And no one knew. And it HURT ME deeply. And I can't get it back. It's like a break up. You cannot make you boyfriend or husband take you back. But then - you sometimes cannot work at the same job like nothing happened either. Meanwhile - here I am - on TWO improv teams - trying to deal with sickness, feeling awful, deal with some people who are kind and loving and some people I wouldn't let dogsit for me... and HER. And it all blew up.
And I'm VERY good at asking for my needs to be met and -- I'M FINE WHEN YOU ASK FOR YOUR NEEDS TO BE MET. But somehow on this particular team - people went from jovial bear hugs and hanging out to almost anger - and not just at me -- but certainly I didn't help- because my own inner focus made it hard for me to give a fuck what was happening in anyone else's life.
And so when I reach out - I do so i fear - clutching fear - terrified and saying all the wrong things - being mean - blowing shit up - and when my former team retaliated - the people who already told me they wanted distance b/c they didn't want to watch me die or the people who already took their distance-- they stood back...but the people who were angry and felt like taking a swipe-- they took them -- big bear swipes. And they told me how horrible I was -how selfish- how *insert anything jerky you can*....
And probably half of their insight was true. And probably half was false. And it didn't really matter - because at that point I had already said -- I'm going to take some time off because I'm not feeling like this is working... but it didn't matter -- they wanted to say what they wanted to say.
And -- didn't matter that I have TRIED HARD. Didn't matter that I have come through for the team over and over on my sickest days-- because sometimes what you give is never remembered. I truly believe that people - in your darkest and deepest hour of need become one of two things -- they become champions or they become assholes. Very very few become neutral. Some THINK the are neutral -- but those who THINK they are neutral are usually leaving you stand there flailing looking for hugs or looking for friendship.
This is a team of people who used to go out - we used to hang out -- we used to be FRIENDS. And the moment I got sick -BUT BEFORE I TOLD THEM I WAS SICK- they were sure to call me one by one - and tell me what a jerk i was being... how "down I was" and what a "bummer" was being on the team. And so - I decided it was time to either tell them i was sick - or quit the team. I had a hard time deciding.
It appears I made the wrong decision. My time would have been better spent writing my dissertation, resting, loving my dog and cats, moving home, vomiting etc. I call this weeds. You tend a garden and look down and find they are insidious weeds. Not everyone mind you -- one guy- he was my fucking knight in shining armor. I would call him and cry - and he would listen. And he got me through some REALLY DARK NIGHTS. And I am grateful to him. If I could have it my way I would have had an improv team of him and like 3 other people -- but I don't have it my way. Instead - I left the team on my own -- but they were sure to blow it up good so I make sure I NEVER COME BACK -- just in case I should have the bad sense to go into remission.
--
I also get this creeping sense around some people like... "are you still alive?" "Aren't you dead yet?" These are other negative thoughts. I try not to have them... I really do. It is why I haven't blogged for a bit. I try hard to bring the funny... but I know from deep pain and deep anger and deep failure and deep emotional loss are all the human ness. I AM FAR FROM PERFECT. I'm a giant fuck up. My brain is going one frazzly fiz-gig at a time. I know this.
My family has to look for dementia units just in case my kidneys outlive my brain. And I am DETERMINED that they will not. I'm just telling you - I will NOT lose my fucking mind first. It already happened 3 years ago - and everyone remembers but me. And they say, "Be happy you don't remember Melissa- because I do." And no-- I have VERY few friends from that time. It was too painful for them. And those who ARE my friends - they are good friends. But most do tread lightly. Central nervous systems are fragile. And it is a shame that my cognitive abilities and my brain-pan is so tenuous. I mean -- I have so many friends with fragile hearts (yes- me too) -- and who have water on their lungs (got it), or just have shitty kidneys (here)... but why my fucking brain... I hate that my moods and my ability to think and my memory, and all the things that make ME - ME... my personality-- all of MEEE go away -- like alzheimers... and I take fucking dementia and alzheimers medications. It's so shitty and unfair. And I want so badly to ka-blooey my brains out... but I keep holding on to this treatment plan... because IF -- IF we can get this shit into remission -- I can hold on- hold on to ME.
And there is always this thin line I'll walk - as always-- that I'll be the lost soul... the distant look -- the empty eyes -- the shining star who once was and is no more.. and yes-- it is why I feel so badly the need to get it allll out now. And why the more I hear people tell me what a fucking jerk I am -- I BELIEVE THEM. And it scares me. It fucking scares me. It's one less piece of me I have to hold on to.
And the less relationship I have -- the less of Melissa there to love to know and to remember. Till the time I die -- no one will even come to say goodbye -- because I'll have been dead inside my fucking brain for sooo many years. And that is what I'm mourning and afraid of. That is what I fear. That is what tears at me. And so -- all those mean people who are saying, "you're a jerk Melissa" yes it breaks my heart -- but my head hurts and my throat is full of sores and my ass is full of hemorrhoids from the liquid poo to the bricks of shit -- that my body just cannot decide from one day to the next we're having... and I'm afraid. I'm so afraid -- not that I'm a jerk -- but that the REAL TRUE MELISSA IS GONE. Gone. And that every day my brain is a little less a little less - till my parents will be feeding me apple sauce and baby food - and NO ONE WILL HAVE THE MERCY TO FUCKING KILL ME. And everyone will just shake their head and tsk tsk.
Oh that I were a little bit of a jerk than to lose the real beautiful Melissa that I KNOW I truly am. Meanwhile-- I miss my champions - because I haven't had one of those for a while. I've been too jerky and too gone for too long. Once you're sick sick you tend to use them up.
Even if I do go into remission - I'll NEVER stop having lupus. And the threat of it will hover over my head - like an axe ready to fall.
--
I want to do a one woman show- with 5 women's stories -- and I don't want to tell my own... only b/c my own story seems so pathetic and stupid and retarded and whiney. And what's the point. I'll just sit in a rocker and stair out at the world and pee myself (neurogenic bladder) and drool a bit. And have people remember who I used to be. And maybe - MAYBE if I'm VERY LUCKY-- very lucky-- I'll code then and there and god will have some fucking mercy for a change.
The other stories-- now those stories are beautiful.
I'm just a jerk. And everyone hates me. And I'm horrible and unlovable. And people need to take "distance so they don't watch me die."
Tomorrow I have to go be funny. And I've always found it my job to be funny and kind. Because there are so many tears and so much pain. I've always found it my job to catch people in the eye and make them laugh -- because EVERYONE ELSE will catch them and make them feel bad about themselves. Somewhere along the way I guess I fell down. But tomorrow I get a 2nd chance to at least be funny for a few minutes. And then Monday I get to go to a children's hospital and be funny for a 45 minutes -same thing. Every day- new chance to make a difference.
Maybe I'll never be good at REAL relationships... maybe I wasn't put on the earth to connect solidly with people... maybe I'm here to flit like a butterfly and be lonely but funny. I don't want that. I want real solid relationships and honesty and connection. But first - I have to know I'm not gonna have brain blowups and turn into a fucking alzheimers patient on them.
My spirit is dampened. But I promised Vi I'd write tonight anyway. Thank you for the kindness and the visit. I am not a failure. I am the joy that I give and the joy that I receive. And I have done both even if I have failed some.
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