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Chronic Snarkoploist: Alive – With Pink Blooms!

Post Published: 18 August 2010
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 20 responses. Leave a comment

I call it the yin yang.  When we are BETTER than we were.  When we are NOT dying (as fast or anymore).  But we are still CHRONICALLY ILL.  We are still not normal. We are – DIFFERENT– OTHER.  We still have special needs.  Life still happens differently for us.

When we travel, we travel with one bag full of meds- round the clock time-tables for taking them, IV’s, sterile bandages, fluids that flush tubes, immunosuppression, fear of infections. We have story after story and a million memories- nightmares even.  These stories, depending on how we tell them, either heal or shatter their listeners.

Our memories, our health, are WEAPONS – sometimes aimed right at us.  LIFE IS NOT SUPPOSED TO KEEP SUCKING AFTER … after chemo or treatments or this medication.  It is not supposed to keep feeling bad after we start new doctors or lifestyles or diets or health systems.  And yet- we have our ups and downs.

I just had one of the worst nights of my life the other night.  And yet- I know how ride them out like a tidal wave – because I am used such nights.  I rode it out – and my chronically ill friends, and those who are care takers – gathered around – to bear witness to my pain and suffering. And those who are not –those who are AFRAID OF ILLNESS AND PAIN – they were gone – GONE LIKE DUST. They were gone the way you and I both know people leave our lives.  Some people leave for a moment, some for a long walk in the darkest nights.  I pay them no mind.  Sometimes you do it alone.  And sometimes you have friends who gather with you.

My chronically ill friend is so happy because she has a wonderful boyfriend.  She is young and sexy and minxy and fine.  But she says, “I just hope he’ll stay, I hope he doesn’t get tired of me being sick all the time.  I hope he doesn’t get tired of the hospital.”  “I hope he’ll stay.”  It is like her mantra.  It is all of our mantras. I have nothing to give her.  Because research indicates that MOST MEN LEAVE or “emotionally check out” in other ways.  They just do.  They check out by working longer hours or avoiding dealing with the housework or the children the way they used to before illness struck.  The only time this does not hold true – are when they have grown up with some form of chronic illness in their families OR they have made an EFFORT to stay involved. But THEY must ACTUALLY MAKE THE EFFORT.

I don’t want to sound harsh- but single or abandoned sick women seems to be the NORM.  And men who get sick appear to have women rally around them.  IT IS NOT FAIR – BUT IT IS PART OF THE CHRONIC SICKNESS REALITY.  However, that is not to say that being a single woman is a life sentence.  The point is- even chronically ill men lose their friends.  One research article says that brain damaged patients will lose at least 80% of their friends within a year EVEN if they make a full recovery.  Another says that telling your friends you have cancer you can expect 50% of them to shut down and go away (emotionally, or physically).

Recent discussions and articles talk more and more about why and how people shut down their hearts and what makes us open them up.  Basically- I have found that some people just cannot emotionally sustain pain or illness.  I thought it would be a lonely road, but I found so many people who were my friends and support along the way.  It is a difficult time to realize that MANY OF YOUR FRIENDS AND FAMILY will be among the first to go.  And it will be a long time coming before you open your eyes and realize with joy that YOU ARE LOVABLE AND STILL WORTH LOVING.

And THIS is the mind fuck.  Pain, joy. Loss, happiness.  The mix. A real mix of loss and gain not just from the actual illness – but from the very fabric of social support you once counted on.  And then – even goes even further.

That gratitude and that pain mixes more.  The happy sad, the good bad.  Knowing that we are DOING BETTER but knowing that NOTHING will give voice or our losses.  Nothing will comprehend them but each other.   Do we makes words?  Do we make art? Do we bother?  Do we get out of bed each day and give a fuck?

My friend texted me her pain, “I just want to do what every 24 year old does?” OF COURSE!! OF COURSE SHE DOES.  What is this?  How can this be?  How can life exist when there is so much fuckery going on? How can this much sickness exist when it is not our fault?

And yet – day after day- we get up, we do our best, and we make it worth it.  Life is precious, life is important. WE MUST GO ON.  And day after day, we are assaulted from all angles telling us, “we’ve lost your labs, you’re sicker, you’re no longer in remission, you’re rejecting, blah blah blah – you’re sicker still—do you have the strength to go on? Shall we beat you down some more? DO YOU HAVE THE WILL TO LIVE? DO YOU??”

I can talk on and on about partnership with doctors.  I can tell you story after story about surgeons who put their heads on the wall and cry when they lose a patient. Or doctors who have to find a closet to sob in when they find their patients have illnesses that will not go away and they so badly want to cure everything BUT THEY CANNOT.

Likewise I can tell every doctor story after story about how their behaviors affect us as patients.  And THEY DO affect us. I just spoke to one doctor who agreed that these are people who have wanted to go be heros since they have been in their teens. They spent their lives with noses in books, NOT BEING SOCIAL.  And so they never learned how to play well or share toys. They don’t even know how to be good to each other, let alone how to be good to their patients.  IT IS TRUE.  Many do not.  YOU DON’T HAVE TO TELL US THAT. WE HAVE FOUND OUT FIRST HAND. HAVE WE NOT??

So I am here tell both sides of the tales… His side, her side, the “truths of it all.” The bullshit of not having insurance. Of getting meds declined when you need them to live.  I just did! I had my most important med declined and had the delightful joy of paying out of pocket – OF HOPING I STILL HAD MONEY IN MY CHECKING ACCOUNT HOPING IT WENT THROUGH.  Because I needed it TO LIVE.

No one knows what it is like to NEED A MEDICATION TO LIVE until they do.  But everyone knows what it is like to need air.  So if you want make point have someone hold their breath and then hold it and hold it and hold it.  And tell them they need to start paying for the air they breathe because IT ISN’T ON THEIR INSURANCE PLAN yet their doctor finds it medically necessary.

And who on earth ever thought THIS would be our lives?  WHO THOUGHT?  None of us.  We live with it – this bullshit – the fucked up bullshit.  Some of us have more VISIBLE AND OBVIOUS illnesses.  Some of us have wheelchairs and crutches.  Some of us have less obvious scars we can cover.  Some just have these MEMORIES – painful memories we can share… like weapons or like balm.  It is our choice.

I struggle right now.  I teeter.  I am overcome with so many of them.  It is UNFAIR AND UNREAL right now to hear of so many losses.  Life is so precious. It is so powerful.  It is so important.

The leaves fall from the trees and everything looks like it dying from everyone’s perspective.  The tree it is dead! Should we cut it down? Give it one more season let’s see how it does!  And then spring comes and the sap moves and all the trees have told each other story after story underground silently when no one could hear but each other.  And even the frost bitten branches decided it was time to live.  And spring comes.  And greenery bursts to life.  And some even have pink blooms.  ALIVE! Pink blooms!  Even the frost bitten branches decide to bud this year – PINK. Because fuck dying.  That will come soon enough.

So where are you? What were YOU supposed to be doing at this point in your life? Your careers, your children, your marriages, your life? Could you tell me a thousand stories too? Could you heal me or wound me with them?  Which do you choose? Life or pain?  Is it hard? Are you struggling?  Is it a mind fuck for you?  How many friends have you lost? How many have you gained from your illnesses?  Are you stronger now? Do you have weakness?  I want to hear your stories.  I want your words.  Let us heal each other, shall we.  It is time is not?

Thank you for being in my life.  Same time same place next week! Kisses!

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20 Responses to “Chronic Snarkoploist: Alive – With Pink Blooms!”

  1. Linny says:

    I know you sister. I didn’t know I had a sister. I didn’t know someone spoke my language. We speak between the betweens. For most we a not there. We do not breath the same air see the same sights or walk the same way.

    I thought I was alone. I am sorry to find you are here. But I am glad to know I am not alone. I did not want to be alone, but I did learn something being a lone. I learned something very important that I need to know. I learned that I like who I am.

    I am very kind and I truely care. Sometimes I care so much it hurts and I cry. I value the smallest things. I try to be extra kind. When I am out, I speak to the people who seem alone. I make small talk with them and smile. I can tell that they are not used to being noticed. I can tell I have made them happy. I am happy then too. Because I like to be sweet.

    When I am scared. I talk in my mind to myself. I pretend I have my own mother, and say sweet dear things or sing to myself. I used to do this when my children were in my care to them, I know it was good for all of us….even me.

    Being a mother to them I could be one of them and know what they needed by what I didn’t have. I could read to them and tuck them in. And love them even when they were not very nice to love. Unconditionally.

    This is what I now do for myself. I love the person I have become. And even though I have been sick and you know being sick has been bad but it is not the worst thing that has happened to me.

    The fact that worse things have happened to me makes me know I survived worse and this is a piece of cake.

    I am proud that I am so strong. Everytime I faulter like earlier today when I thought , briefly, check me in, I’m done. I thought an hour later. No I’m not DONE> in fact I’m stronger than ever……come oh, was that you’re best shot…..OH I thought for a moment you had me but, not yet you sucker. YOU WILL NOT WIN FU!
    so,……ahhhhhhhhh, I’m in charge again. The storm is passing and yes I am battered and beat up and all that. But I have a smirk on my face, because the enemy has egg on theirs. Ha

    And SHE would laughs last LAUGHS BEST>>>>>>
    thanks sis, you reminded me what I’m fighting for, love ya, Linny

    • Melissa Travis says:

      Linny- I adore you… thank you for this lovely post. It was my world’s roughest week this last week. I missed comments entirely until now… but I am SO GRATEFUL to read this. You brighten my entire world right now.

      xoxo
      Melissa

  2. @chemo_babe says:

    here’s what i am coming to believe:

    our friends and loved ones suffer along with us if they are truly along the ride for the journey. it’s a hard and often thankless road for them. some check out, either by physically leaving us or just putting distance between us and themselves.

    those friends who manage to ride the crazy rollercoasters of our illness — who are there for all the ups and downs — grow as human beings. they are more compassionate. their capacity for joy is deeper.

    at least i hope that this is the reward. because i sometimes have a hard time keeping my heart open to all the suffering around me. i intend to, i strive to. i know i don’t always succeed. but my hope is that by allowing it in, by holding myself back from “othering” them through superstition or a false sense of superiority, i can better appreciate the good and the joyful.

    • Melissa Travis says:

      love you @chemo_babe! yes- sometimes friends are strange… some leave some come back… it is hard not to take it personally… xx

  3. beesoup says:

    Thank you for this. I needed it, right now more than ever. My partner is chronically ill with an ‘invisible’ illness. We’re both under 30. I *am* tired of him being sick all the time, and I *am* tired of the hospital. That doesn’t mean I’ll leave, it just means that I’m tired. We’re both so exhausted. It means that I miss him during times when he doesn’t have the energy to be anything but sick. I don’t resent him for that, but it is what it is. I feel guilty for any of my pain, when it comes to dealing with his illness, because it certainly doesn’t parallel his. But it’s there.

    • Melissa Travis says:

      hugs to you beesoup —
      thank you so much for your sharing and your honesty… we need more support groups for partners of people dealing with chronic illness… PERIOD.

      adore you for writing in!!
      xx
      Melissa

  4. Linny says:

    Chronic is different than acute.
    There are fewer answers.
    There are many medications,
    doctor’s visits ad nauseum
    as cautious hope is the rule.

    There are no bouquets of flowers.
    No “get well soon” cards.
    There is boredom, tedium and loss.
    Much is sacrificed on the altar of illness.

    Slowly you watch them seep through your hands,
    career, fulfillment and relationships.

    Your priorities change,
    Each aspect of life is gradually foreign to you.
    Goals are altered by this uninvited visitor
    who has taken up residence in your body.

    How does one explain
    what it is to live a compromised existence?

    I don’t want sympathy
    because it doesn’t have substance.
    You can’t eat it.
    You can’t take it to the bank.
    It offers no comforting embrace.

    Sometimes, sympathy actually whispers,
    “Grateful that it is you who suffer,
    not me.”

    Empathy is entirely different.
    It reaches into the heart of the one who suffers
    and soothingly comforts,
    “I know what it is to feel what you are experiencing,
    therefore you are not alone.”

    Eventually, you learn,
    if you cannot change your disease
    there must be something you can control.
    Your heart, your mind, your attitude,
    these are still at your command.

    You begin to search for joy
    like you did as a child.
    One day you hear the sound of laughter
    and realize it is your own.

    You stop wallowing in self-pity,
    set the feet of your mind on a new course
    as you realize time does not stand still.
    Even half a life cries out to be lived.

    I wanted to send you the above, but I want to tell you something I learned myself.

    My husband died at 34. We were at a party. We did not know what was coming. I missed the chance to tell him things I wanted to say. He was already gone when I realized what could happen. I was 32. I had 2 small children. A stay at home mom with no job.

    So I say to you this. HE IS STILL HERE. Do not waste the time you have. Think what you can do and say he is still here and miracles happen. Never loose hope. Stay with him and be glad you have whatever time you have. I am so sorry you are going thru this, my heart does break for you, but he is still here. Try to realize this. My best to both of you, xoxoxoxoxoxoxoxoxoLinny

  5. Melissa, like all of your columns, this one is amazing.

    In one of my MBA courses, we were tasked with the assignment of mapping out our long-term career goals. We were asked, “Where do you want to be in 10 years? Fifteen years? Twenty years?” At the time, I remember thinking, “This is ridiculous. I’m doing good to know where I want to be one year from now.” But I didn’t really get how ridiculous that task was until diagnosed with cancer. I now think that mapping out specific long-term goals is a waste of time. Two years ago I had very different plans for my life, and cancer was not part of those plans. My plans were changed overnight. One day, I had great plans. The next day, I had cancer.

    So now I focus on today. I’m not saying I don’t think about the future; I do, but I don’t try to map out my life because I know it is a waste. I know that focusing on how I’m living right now is so much more important than focusing on how I’ll be living tomorrow.

    I just hate that I had to get cancer to learn that.

    xoxo,
    Joanna

    • yogichic says:

      Joanna, I agree with you wholeheartedly!

      ☮ ♥

    • Melissa Travis says:

      Joanna —
      yah – getting cancer to learn to live in the present moment RIGHT NOW is a pisser isn’t it. 😉

      Thanks so much for your lovely comments. You are so beautiful… xoxo
      Melissa

  6. Linny says:

    Sue Falkner-Wood
    Life with Chronic Pain: A How-to Guide

    The afforementioned should be credited
    on the above entree on Chronic Illness
    “the Poem”

  7. Parin Stormlaughter says:

    You and Dear Thyroid healed me the other day.

    Here, on Dear Thyroid in the comments on Chronic Snarkoplist, I had a complete meltdown in front of the whole internet world, a meltdown the likes of which I have not yet had in my life. Decades of pain ran off the ends of my fingers like battery acid. I wrote things on here I did not even know were in my mind and frankly, I was horrified.

    You and Dear Thyroid did not reject me. You did not reject me. You did not cut this dead tree down.

    Over the weekend I poured out paragraph after paragraph of thankfulness, gratitude, appreciation, and love. And did not know how I should get it to you. I imagine you may not have cared to hear from me.

    I would like to share it with you. I believe I’ve got your gmail address, DrSnit. No need to read it right away. Wait until you’re feeling down, when you need to be reminded that the good you are doing virtually cannot be measured.

    Read it when you’re worn out and no one has said a word of acknowledgment.

    You did not reject me. You did not reject me. You healed me. And I love you for it.

  8. stranazingarella says:

    I still haven’t told my friends, or even my parents what I went through. It’s positively indecent to feel embarassament at not feeling up to par in the ‘living’ world, but I do. I keep trying to pretend I am fine, but the pressure builds and builds. Sometimes I have little meltdowns and my husband just kind of looks sad and his eyes well up and it makes me feel even worse. What can you do? It’s not our fault we have cancer but it feels like a failure of sorts.

    • Melissa Travis says:

      yes! I have often talked about how having an illness FEELS like a failure — and how not getting better from it (fast enough) or ever feels even more like one…

      Thank you for sharing. I do want you to realize that with sharing your stories comes healing not just for you – but for those with whom you share your stories…
      xo
      Melissa

  9. As always you inspire me snitty. Provoke my tears and buried sadness that often comes with lupus. I usually choose to teeter on the positive side when it comes to lupus. The darkness is so deep, and always threatening to pull me in. The needling thread of thought that no one will be there for me as a life partner and be able to deal with my lupus….its tough.

    There are so many daily worries that I try not to even contemplate the long term ones. I wrap myself up in the love of my friends, the ones who’ve stayed and shown that they won’t leave me as well as the amazing friends & support I have found thru social networking.

    I think the hardest part is wondering why us? WHY!?!?!? and WHY is it so difficult to find reliable help! The healthcare sysytem and government seem to turn a blind uncaring eye, until someone makes a loud enough stink or until someone THEY know becomes ill.

    You’ve inspired me to dig into myself and release a bit if my darkness with lupus. When it transpires into words, I’ll most definitely share <3

    Loving you always & never letting go <3

    • Melissa Travis says:

      You are my lupie sis!! Thank you so much for writing in and being an inspiration to me as well!! Why not us right? Sickness happens just as easily as does health.

      love you!
      Melissa

  10. Lolly says:

    Melly-Mel,

    what a poweful column this week a real thought provoking one.
    Isn’t it sad that some people just cannnot cope with pain and illness from there nearest and dearest down to there close friends of many years but the sad case is it happens just as one loses someone close to you by death some people know how to react, say the right words say nothing but just be there incase you need them, there is no wrong way or right way the only thing that i find hurtful is the ones that shy away only to disappear because they cannot cope with seeing you upset or hurt because you were always the strong one always the one they came too or looked up to. but there comes a time in your life that you realise that it isn’t the end you found out early that when hard times or illnesses strike again they are not going to be there for you but there are those that will.

    I am undergoing yet more tests for lupus and other things, this time I am not worried about it, I will take what life throws at me and bat ift back to the mother fucker. we can worry about all the things that might or might not be and forget to actually live, so take those good days and enjoy them have those days when pain is so bad it reduces you to a mere shell of the person you are because there is something in you that cries out loud and clear and that is I am a fucking fighter and I won’t give up no matter how bad it gets and just knowing that you do have the support if and when you need it.

    You rock you’re solid and miost of all you speak to me in volumes. I so relate.

    Ps keeped tuned because I have a thytune coming out sometime soon and I know you are going to understand every word of it it was the hardest one I have done so far. so get on that base guitar and rock it out with me.

    Luv ya
    Lollyxoxox

    • Melissa Travis says:

      Lolly-Lol!!!

      I have been away all week and missed this news! More tests for lupus! My love – NO! You’ve been through ENOUGH!!! Please let me know how all your tests and results turn out for everything OK… hugs. I’m waiting to hear. And keep me apprised of your new thytune as well.. you’ve got such a knack for those!!

      Sending you love and wrapping you up in my heart!!
      xoxo
      Always,
      Melissa

  11. Linny says:

    Dearest Melissa~ I {we} , are so glad you are back. It is so warming to hear I was able to “touch” you with my words. The PEN is mightier then the sword!
    I wanted you to hear me and I’m happy did. 🙂 I send you flowers and a hug. Take care my sweet and be good to yourself. xxxxxxxxLinny

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