Tuesday, July 5, 2016

Not Enough

Post Soundtrack:  Afterglow by Phaeleh

I am not enough.  Whatever I attempt to do, it is always impacted by limitations and interference that leads back to my Lupus.  It is a never-ending process which I have so little control over.  I can even tell where a choice is my own fault or the fault of my Lupus.  Did I choose not to Swiffer because I was feeling lazy, or because it would cause more pain, or would use energy I didn't have to spare?  There is no clear cut answer, and no one to place blame on but myself.

I make those sorts of decisions on a continual basis, attempting to balance what I feel are my responsibilities with the very real necessity of taking care of myself.  I am forced to constantly evaluate and re-evaluate my own motives, putting my decision-making under a private micriscope.  No matter how small a choice, it gets examined closely and repeatedly.  This process runs in the background of my mind, constantly and without end.

To know this is something there is no foreseeable end to is a crushing weight.  I will always be behind, attempting to catch up with all that I feel I might have done, all I could or should have done.  So I will never be enough.  How can I, when all this doubt and guilt is hanging over me?  I can't do this alone, but to seek help only highlights how broken and lesser I feel I have become, which makes my expectations of myself all the more insurmountable.  I feel trapped in a cycle where my best hope is just to endure.  That is a despairing and painful way to live.

Wednesday, April 20, 2016

The Beast

Post Soundtrack:  What If by Coldplay

Fear is an extremely powerful force, even when you don't know it is at the heart of a problem.

For a while now, perhaps even longer than I'm aware, I've been struggling against something internal.  It's been nagging at me, dogging my heels, echoing in my dreams, and spilling out the cracks and into the world in a rather negative manner.  I've been doing my best to fight it, to keep control.

One aspect of that fight is that I don't want to hurt those I love just because I'm hurting inside.  Despite my best efforts, it still has been creeping out and biting at my beloved ones.  I despise and resent this, but am only partially successful at clamping down on the feelings to keep them inside.  My husband says it's only leaked out in minor ways, but it doesn't feel like that to me.  It sometimes feels like a raging beast, clawing me raw inside, trying to find its way out.  I've stuffed it as deep and as far inside me as I can, but still its roar reaches my ears.

The other aspect of this is closely related to the first.  That ferality is frightening and represents many things that are beyond my control.  It is my helplessness, my sense of being useless, my frustration and resentment, and it is all very scary.  To let it loose is to lose control, to erupt into chaos, to meltdown, and it isn't something I welcome or desire.  That loss of control is the opposite of what I desperately want, and so I've fought to keep it caged.

Needless to say, that hasn't been terribly effective.

I wasn't even sure what was wrong.  All I knew was that something down deep in the darkness of my soul was desperately trying to get out, trying to tell me something I didn't want to hear.  And I knew I didn't really want to give it a chance to voice itself.

It's ironic, really, that when I'm faced with major upheaval, I shut down emotionally.  I've always been quite in touch with my emotions, and those of others.  It's part of who I am.  But when something goes very wrong, it means that my emotions become a force of nature, so I shut them off to save myself, but more importantly, to save those near and dear to me.  I fear for what havoc will be caused if I let it all out.  Of course, closing my feelings in is never the proper or helpful long-term solution, but the defense mechanism does serve a purpose, for a time.

The usefulness of that mechanism does eventually fail, though.  Today, I came to the end of that rope, and had the meltdown that apparently I very much needed, and came fcae to face with the beast inside.  As I was held in the firm security of my beloved's arms, I circled with the beast, eyeing it as it snarled and paced and groaned.  The more I talked about what I felt, the clearer the beast became, until I could finally give it a name.


Not just a specific fear, or a basic, straight-forward fear.  No, this beast was much more complex and inexplicable than that.  It was fear of living, of the torture of the unknowns of each day, each hour, each moment.  It was the agony of never knowing, always anxious for what could be.  It was the painful ache of knowing that nothing is a given, whether you mean for the good or for the bad.  You might suppose fear of dying was involved, but much much less than you'd suppose.  No, much more was the fear of how long I would have to endure these uncertainties.  Just imagine... the rest of my life, forty or fifty years if I'm "lucky", with every day wondering when my disease will strike, and in what way, and to what degree.  Wondering if this will be what kills me.  Wondering when that might happen.  Wondering what it will take from me.  Wondering how long anything will last, whether it is painful or relieved.  Every.  Day.  For fifty years.  Living in fear.

This is the fear that runs bone-deep in me, that permeates everything, whether I will it to or not.  Whether I'm aware of it or not.  No wonder I'd been struggling so hard of late.

The fear is back in its cage now, for the time being.  It will never go away, though it might fade to a shadow for a time.  Even then, it will still whisper in the shadows of my heart, a subtle counterpoint to all the ups and downs of my daily life.  Acknowledging it and allowing it out takes away some of the power it holds over me, though.  It blunts those claws, and muffles those roars.  Some of the restlessness and pressure eases by knowing my foe's name.  But it never will leave me, I don't think.  There will always be a taste of it, even in my calmest and most confident moments.  As my husband pointed out, it is not a matter of being weak or cowardly.  It is a part of human nature, to be afraid of trials you know are coming, but cannot predict.

So I will go on being human.  I will hupomeno, endure.  I will find strength I did not know I had, or borrow my husband's when I cannot find my own.  I will learn to live with the fear, to let it loose when it threatens to take control, and to circumvent it in order to keep living and moving forward.  Fear is powerful, but it will not rule me.

Tuesday, April 12, 2016

Tandem Diving

Post Soundtrack:  Dive by Salvatore

Dealing with an illness is indescribably difficult.  Something about facing sickness causes an odd, reserved space within a person that is deeply private and not easily shared.  Although the stereotype of a chronically ill person is that they are needy, helpless, and even lazy, that stereotype is about as far from the truth as it can get.  It seems that when facing sickness that is completely out of one's control, the result is to buckle down, shut up, and try to pull through as best one can without complaint or help.  I wish I knew why that was, but I've seen so many attempt it, myself included.

There is this wordless inner drive to do my best on my own.  I don't want to admit when I am hurting.  I don't want to reveal that I feel bad, and don't want to try and explain what that means.  There are no words sometimes for that "blech" feeling, it just is.  There are times I don't want to ask for help, though I should, because asking for help means I can't do it, when I should be able to do it by myself... if I were healthy.  Perhaps that's the key there... the aching longing to be healthy again.  It is a never-ending desire to be normal again, to be able to act and feel and move and think like I did before my illness struck.  That haunting desire entices me to pretend that I'm healthy again, to ignore the warnings my body is giving me, to act out the parody that it will inevitably become.  It's a vicious cycle, since not listening to my body equals flares and setbacks that are dead weight to a grieving and depressed soul.

This song is how my heart feels when I turn to my husband for help.  "I don't wanna drown tonight," is so apropos.  I drown in my symptoms.  I drown in my emotions.  I drown in my struggles.  I drown in my perceived failures.  I try to face it by myself a lot of the time, but there comes a point when I just can't anymore.  Each verse starts with that feeling of teetering on the edge of being incapable of dealing with it on my own anymore.  "I've been doing it myself, but now I need some help."  This sort of admission is terribly difficult.  Admitting that I need help means I'm not enough, that I can't, that I'm defeated.  That idea aches through me unspeakably.  No one has shamed me, nor accused me, nor been disappointed in my failure to live as if I'm healthy, but I do it plenty to myself.

But I am thankful that I am not alone.  I don't have to face any of this on my own.  "Ain't nobody know me better than you know me," the song says, and that is so true of my husband.  "But I know we can swim."  He is always there for me, whether it is to carry something for me, to help me get up, or to hold me when it's just too much, offering his emotional strength as a bulwark.  But I would never require he do all this for me, so the question asked in the song, "Tell me, would you dive with me?" represents my call for his help, my plea that he stay with me, even though I know he will already.  It is both an appeal and an acknowledgment of him as my partner in my illness.

Without my husband, I would be lost at sea.  Holding myself away from him for his sake would only hurt the both of us.  He wants to be there for me, and I need him so desperately.  So we have come to a point where we dance fluidly with and around my Lupus, together.  We swim side by side as the storms on the sea of life buffet us.  None of it can separate us, and careening along in tandem with my beloved, I will not drown.

Tuesday, April 5, 2016

The Tiger in the Cage

Post Soundtrack:  I Give Up by Elijah Bossenbroek

You are the tiger in the cage.
The lion in the muzzle.
Your wild spirit is being drained
Where others cannot see it.

I watch as the jesses are tied on
And the hood pulled over terrified eyes.
I watch the lasso fall and pull tight
Around a throat pulsing with fear and confusion.
I watch as screams of defiance are choked off
By the cold, cruel hand of reality.

Don't let that spirit die,
Don't let it tie you down!
Learn to live free and wild
Though hobbled by agonies I well know.

Don't let it take the heart out of you.
Let the fury come.
Fight and claw for what is yours.
Call out for aid from those you love.

Sing and laugh and challenge the wind
Find your voice and cry aloud!
Show your rage, embrace your fear,
Find the light around you,
Savor glories passed over before.

Learn to live, learn to thrive,
Learn to soar and ride high,
Lean on others, search out the love
Grasp what matters in each day
And see the good that awaits you in the dark.

Could the truth maybe, possible be...
That two broken wings can make us whole?

Friday, November 13, 2015


Post Soundtrack:  I Lived by OneRepublic

As I learn how to navigate this new pathway of living with disease, I am realizing that some folks naturally seem to know how to step up and be a friend in this difficult situation, while others mean well but struggle to know how best to help, how best to be supportive.  So here is my list of how to be a good friend to someone dealing with disabilities or disease.

  • LOVE - While disability may impact who we are, we are not defined by that disability.  We are people, just the same as someone with a crooked smile or flyaway hair.  See us for who we are, love us for our hearts and inner selves.  There is much to love about us, from our quirks to our kindnesses, from our hobbies to our pet peeves.  Yes, this still involves our challenges, but who doesn't have challenges?  When it comes right down to it, just love and care about us the way you do all your friends!

  • LEARN - It means a lot to us when our friends take the time to read up about our disabilities or illnesses.  Educating yourself about our conditions has many benefits!  You are likely to better understand why we do (or don't do) whatever it is we've been doing.  It might help you know ways to offer assistance, or just allow you to talk with us about what's going on with our health.  If you have a question about our condition, ask us!  The gesture of learning about what ails us is touching and shows us how much you love us!

  • LISTEN - Sometimes we just want to talk about our troubles.  These may or may not involve our medical problems, but if they do, just listen!  It can be hard to find someone to discuss things with when your health is dicey.  Pity and dismay isn't really the kind of reaction we are seeking.  Neither is it helpful to be assured it must be nothing when it's something that's important to us.  Mostly, we just want a friend that will listen, give us their attention and understanding, who will make no more of what we say than we do.  Sharing our struggles isn't a plea for being coddled, honest!  Our feelings need to come out, and having a safe person to confide in can mean the world.

  • LIVE - What do you like to do?  Likely we like to do that too.  How do you live your life?  We do the same things.  These are opportunities to connect, to spend time together, to offer the company of a friend.  Sure, we might regretfully decline an invitation, but that doesn't mean you shouldn't invite us the next time.  Or the time after that.  Even small things are worth doing together, as friends should.  Movie night on a couch can be just as fun and fulfilling as movie night at the theater, maybe more so!  Spending time in the kitchen, laughing and talking, is absolutely invaluable.  Live your lives with us, include us even if you aren't sure what we'll say yes to.  It will mean so much to us that you have included us.

Perhaps it takes a little more effort to be friends with someone struggling with a health issue.  Or maybe once you begin, you find it is easier than you thought.  There really isn't a secret formula, except to just be a friend.  We will do the same for you!  When all else fails, let's talk!  Let's plan!  Ask us how to help, how to do things together, and I bet any of us will be happy to share our thoughts and ideas.  Friends are jewels in life that are to be treasured, especially in times of trouble.  So let's be friends!

Saturday, October 31, 2015

I Was Not Fickle

Post Soundtrack:  Through the Seas of Life by Pilgrimage

Today is a very relaxed, quiet day.  I am finding myself vacillating between peaceful contentment and having much too much room for deep thoughts.  The end result has been a little surprising, as I've come to terms with something that's bothered me for a long while.

You see, for years now I have struggled with housework and exercise.  I'm sure you are thinking, "Well of course, we all do!"  However, I'm not sure it is quite the same thing.  You can make comparisons all you want with broken New Years resolutions, but it just doesn't feel the same.  I followed the same cycle, over and over again, with great agony of spirit, and yet still somehow couldn't break out of it.  It is bittersweet to realize there might have been a reason for that.

I will be the first to admit openly that I am not very good at housework, despite being a housewife by choice.  I don't like to wash dishes.  Many household chores are tedious.  But despite that, I've always had a gratitude and appreciation of having a home to live in, furniture that's comfortable, kitchenware to cook and eat with.  I have a desire to look after these things properly.  It almost feels ingrained in me.  In fact, I've wanted to be a wife and mother since I was very small, and was delighted to be able to achieve both by the time I was 25.  Imagine that, achieving one's life goals so early!  I am happy to be a housewife and a stay-at-home mom! 

Please understand... I really and truly wanted (and continue to want) to care for my house and household.  I adore folding clothes, for example.  I find it very therapeutic to sit quietly, methodically folding while I hum and sing with soft music.  I enjoy the logic of mapping out how I want to vacuum a room, and find it very satisfying when I'm done.  There are aspects to tending the house that I savor, besides the end result of the feeling of a job well done.  My heart is in the work.. or would be.  This is, after all, my chosen profession!

My record with keeping up the house and myself would not reflect that, however.  There have been spates and periods where I have managed to keep things rolling the way I wanted to.  I can recall when we first moved to our current city.  I loved the house, and wanted to take good care of it.  I rose early, blissfully inhaled the cool freshness of the dawn air, and set to work taking care of family, house and self.

I don't remember now how long that honeymoon period in the new house lasted.   I was able to keep up the early rising and whistle-while-you-work attitude for a while.  But inevitably, at some point I stopped.  I grew tired.  I lacked the oomph to keep getting up so early, to keep working at the chores.  As this happened, I began to rage at myself.  Why oh why could I not just keep things going positively?  Why was I so weak-willed?  Why was I so fickle in my intentions?!

This same pattern applies to exercise.  My original suspicions for Lupus began after my son was born.  Shortly thereafter, I began to try exercising to shed the baby weight.  I loved Tae Bo, in fact, and did it faithfully... for a time.  But since then, I've only ever been able to keep up an exercise routine for a short time.  Am I that lazy?  Do I care so little for my physical health?  Don't I know exercise helps the emotions as well as the body?

Today I have come to the conclusion that it was not my will that was at fault.  It was not that I was wishy-washy, fickle, or lacking determination.  My intentions were there, strong and firm.  It wasn't my heart or mind that failed me.  It was my body.

My lackluster feeling concerning my chores or exercise were not due to any fault of my own, nor to any lack of desire.  I've noticed that emotions often get tangled up in what my body is trying to tell me.  When I hurt badly, I get cranky.  When I hurt for extended amounts of time, it makes me weepy.  When my strength or energy lacks, it weighs on my heart.  When my brain is foggy and sluggish, I feel ineffective and clueless.  So when my body would deny me those activities my conscience told me I should be doing, I felt guilty and angry with myself.

I have carried this guilt and anger with me through the years.  The self-recrimination has been unwavering.  So many times I've tried to firm up my determination and tackle those chores.  I've tried being methodical.  I've tried schedules.  I've tried to look at things one item at a time.  I've tried madly working when I've had the urge, in order to get as much done as possible.  I've tried badgering myself, guilting myself, scolding myself, shaming myself, cheering myself on, pulling myself up by my bootstraps... all to no avail.  Just imagine for a moment... fifteen years of beating myself up over this failing.

Except it isn't my fault at all.

This may take a while to let go of.  My cynical side wants to add, "if I can at all," but I'd like to believe better of myself than that.  It's time to stop telling myself I can't because I'm terrible at my chosen job.  It's time to try and grasp that I will do what I can, and need to find new ways to cope with the parts I can't manage.  I haven't the faintest idea of how to accomplish that just yet, but at least I've set myself on a better path now.  At least I can look behind and acknowledge, look at myself and accept, and just maybe look ahead with hope and understanding.

Thursday, October 22, 2015


Post Soundtrack:  Let Go (Sir Sly Remix) by RAC

Sometimes it's the big things.  Sometimes it's the small things.  But eventually, it gets you.  The grief, the sorrow, the agony of spirit.  It overwhelms almost everything else, swirls around you with currents you can't predict or deny but most certainly can feel as it swallows you whole.  For a time, you can ignore it.  The grief gets pushed to the back of your mind, you let normal (or as normal as you can manage) life drown it out.  But as disease intrudes further, as it touches more of that normal life, as it slowly seeps into every aspect of daily life, and as it begins tearing away the things you love, it no longer is something you can ignore.  It isn't something you can keep inside, no matter how hard you try.

It wells up from deep, making your heart feel heavy and giving lie to your smiles.  You are probably adept by now at covering how you are really feeling, so maybe those near you can't tell how you are struggling emotionally.  If you are very lucky, you have one or two people who know better, and can see it in your eyes, feel it in your touch, and instinctively reach to comfort you.  But even then, you hold it back.  You stifle the tears, refuse the sobs, bury the screams, strangle the wails.  You automatically do this just as long as you can manage, carefully hedging in your pain and sorrow so that it won't contaminate your relationships, or taint those you love most.

But that never can last.  Eventually, it must come out.  It has to be released, or it will poison you.  I know it is your instinct to hold it in, hold it close, but I can assure you, it won't work.  To be healthy, to learn to accept and move on, you must at some point let it go.  Open the floodgates.  Find a way to express yourself, whatever works and hurts no one.  Scream somewhere safe.  Curl in a loved one's arms and cry it out.  Take to brush or pencil to let it sprawl across the page.  Find something to demolish and have at it with all your strength.  Or pour it out with words for others to read and relate to.

Whatever your method, let it out.  Let it go.  Express it, let it wash through you, and spew out again so it can't hurt you anymore.  Allow yourself these feelings, admit that you hate what disease has done to you, rage against what it has taken from you.  Release every bit of it, so that you can lift beyond the cage disease has built around your heart and spirit.  Let loose the weights so you can find the way to soar once more, rising above your limitations and boundaries.  Let it wash you clean again, become an empty vessel, ready to fill with good things once more.  Let go the fear, the anger, the pain, the sorrow, the futility, the sense of being trapped, so that you can find again your joy, your contentment, your peace, your love, your serenity.

Please.  Let it go.  You have helped me to let go.  I hope I have helped you to let go too.