Friendship

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!

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.

Grieving

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.

Guilt of a Different Sort

Post Soundtrack:  Always This Late by ODESZA

I recently found myself struggling with a new sort of guilt.  It seems outwardly like a rather silly thing to fuss over, and perhaps it is for some.  For me, however, perhaps this is part of the grieving process.  Either way, it was (and somewhat still is) a valid thing to mull over.

It was prompted by some subtle and some overt things happening that got me thinking.  Many people who are facing a serious illness, especially one that could potentially kill them, end up in a certain frame of mind, or so it seems to me.  This involves a way of thinking that's very close to the very popular idea of "YOLO" (otherwise known as "you only live once").  Specifically what prompted me was seeing that a friend of mine had taken her daughter and her friends out of school and driven them, with their horses, to the beach to spend the day.  A surge in the desire to set aside normal life and live to the fullest appears, to me, to be a natural way of dealing with one's sudden awareness of the fragility of life.

My difficulty is... I feel very little of that sentiment.  It hasn't occurred to me to pull my child out of school to simply go do something fun.  I don't think in terms of, "I want him to have happy memories while I can still make them with him."  Faced with the realization of this, I have to wonder... what is wrong with me that I don't feel this way?!

That is not to say I don't want him making memories.  I do!  But I only feel as much pressure and need to help him create them as I would if I wasn't sick.  I feel only bound by the time he has left being a 'child', not the time I may have left.  In fact, I don't generally think of "time I have left" at all, except out of a vague, nebulous fear of hospitals and such.  I feel no urge to go do something extravagant, adventurous, or unusual merely because of my Lupus.  I mean, I'd love to go hiking in the mountains (not gonna happen, but I can wish!) or strolling along an ocean cliff, but that is because I love those things, not because I have a limited lifespan.

But in discussing this with my husband, he had a very simple response.  "You are content."

That statement, both then and now, stops me in my tracks.  I am content?  It both feels like it's entirely true, deep down, but also seems utterly foreign an idea.  Content?  How can I be content?!  But it seems I am.  Even with my Lupus, I have a contentment that is somehow... transcendent.  It rises above and hovers below.  But it goes beyond contentment.  I also feel ultimately safe.  But that makes a great deal more sense to me than being content.

Upon talking with him more about it, I also decided that my contentment was partly due to preferring a quiet life.  I am indeed content to be here, in my home, attending church services, having good friends visit, and carrying on normal life with my family.  This is the good life, you see.  This is what love and memories are made of.  Not big adventures to distant places.  Yes, those must be amazing memories, but is my life somehow incomplete for it?  Not at all.  I don't feel I've missed out on anything if I never see Ireland, or never walk the Great Wall of China.  For me, all the pleasures of life are here, in the home, with my beloved ones.

But that is for myself.  What of making memories with my son?  That is harder for me to cope with.  Am I somehow denying him something I should be providing?  Does he need me to take him special places, or need me to set aside much more time to spend together?  Perhaps.  I can't answer that.  The only way to truly know if he needed it would be to look back and see from some future point.  Does that mean I should then make a great effort to fill a gap that may not exist?  Somehow I can't find it in me to say definitively yes.  He is rather like my husband and I... he is a homebody, enjoying the comforts of home and family and familiarity.  We spend quite a bit of time together... perhaps not what some would consider "quality time", but I can say with certainty that he knows I love him, that he is of great importance to me.

And yet...

There is a lingering, nagging feeling that I've got it wrong, and everyone else has the right idea.  I mean, what could be wrong with putting out the extra effort to make life special, just in case things go awry?  Is living the quiet life, sharing love and snuggles, and trying to keep things as 'normal' as we can... is that not enough?  This is the sense of guilt that is nagging my steps during this time of birthdays and gospel meetings.  Is the life I'm giving my son enough for him to treasure during the future, when I'm gone?  Is it enough to comfort him, enough to make him never forget how much I loved him?

All I can do is try my best, pray that it is enough, and try to let go of this concern that I should indeed feel guilty for not taking more action on something that seems to be such a basic human nature.

To Define Or Not To Define

Post Soundtrack:  Don't You Know by Gramatik

I read an article on The Mighty​ today written by a mother about her son.  There is a quote from her article that I have adapted to fit myself.

"My disability is defining.  It is not a side note.  It is not a post script.  In the story of my life, my Lupus will not be scrawled hastily in the margins nor will it be offhandedly mentioned in the afterword.  It will be front and center, along with my strengths, my flaws, and my accomplishments."

In her article, she is discussing her son who has spina bifida.  She is arguing against the idea that disabilities should be downplayed in importance by how we talk about it.  I have heard before that I shouldn't let Lupus "define" me.  She asserts that such a huge thing clearly plays a large role in defining a person, and I agree.

If I try to separate myself from my Lupus, to only perceive myself aside from it, I will forever be trying to hold back the ocean with my hands.  It cannot be done.  It is a part of me, a part that will remain with me the rest of my days.  As depressing as that may sound, it is not evil unto itself.  It is not a curse.  It can be a blessing, it can be uplifting.  It is what I make of it, but it is still PART of me.  Irrevocably.

I am not saying that I am by any means proud of having this disease, or that I will flaunt it somehow as a badge of honor.  It is just something I must overcome, that I must learn from, just like someone with asthma or a bum knee.  It is a daily item to contend with, and it has changed how I view the world, and how the world views me.  That can't be swept under the rug, ignored, or treated like something I'm taking onto myself that I shouldn't.  I have every right to 'own' having Lupus.

I have seen an amazing amount of shame showered on Lupus patients who are struggling with their diagnosis... by other Lupus patients!  They are admonished not to let Lupus change them, or to not let it keep them from doing something, or other such things.  I'm sorry, but I'm not letting Lupus keep me from things I love... it simply is doing so whether I will it or not.  It's a fact of life with Lupus.  That doesn't mean I stop liking to do those things.  It just means I can't right now.  And I might not ever again.  But that hardly is letting Lupus "win".  Feeling upset over the disease is not letting Lupus "win" either.

I'm fine if others don't wish to define themselves by their disability or disease.  I get it.  It may be important for them to designate that separation between who they are and what they have.  For me, I need solidarity of myself, a harmony of who I am and what I am going through.  I have a son, so I am a mother.  That can be hard.  I have a husband, so I am a wife.  That can be hard too sometimes.  I have Lupus, so I am diseased.  That is hard, sometimes extremely hard, but that is no less true or identifiable as me than being a mother or wife.  The only difference is that I did not choose it.

So thank you to Mary Evelyn for giving me words that evaded me before.  Now I have a firmer sense of what I feel and mean when told not to let Lupus define me.  How I define myself is up to me and only me.  And I have Lupus.

A Caregiver's Confession

Post Soundtrack:  I'd Be Lying by Greg Laswell

Recently I wrote a post about my fears.  Afterwards I shared the six fears with my hsuband.  When he asked me why I was afraid of depression, I found I couldn't manage to summarize or read aloud what I had written.  It simply was too difficult and real for me to articulate.  I told him he'd just need to read it himself in order to understand.

What happened after he finished reading was entirely unexpected.

After giving me a big hug of comfort and understanding, he surprised me with a revelation.  He told me, "I understand, because those are my fears too."  I was floored.

"You fear the same things?" I asked in astonishment.  I knew I wasn't the only one with fears, but for him to tell me that he feared the same things was extremely enlightening.  Of course, his side of those fears were different than they were for me, but they still were the same things.

He was afraid of the first three for essentially all the same reason.  My dying, hospitals, and me dealing with lingering suffering all amounted to his gut-deep anxiety of watching me suffering.  He told me he doesn't like to see me hurt, and the idea of seeing me in such dire straits as those three things would involve would be one of his worst fears.  He is not an overly emotional man, but it was clear to me that this affected him strongly.  I know the lengths he would go to in order to prevent me from having to go through any of that, even if it meant he had to bear it himself.

That these things crossed his mind when he entered hospitals or ERs really touched me.  I have done my best to keep my uneasiness to myself, as clearly he has too.  We have occasion to visit folks in the local hospitals reasonably often, so this isn't a once-in-a-rare-while thing.  It definitely made me feel much less alone to realize he shared my trepidation when we go into one.

His fears concerning my medications are pretty much right in line with my own feelings about them.  He too is glad they help me, but is also afraid of side-effects, of them not working, and afraid of the unknown we face when something new is introduced.  Even if he isn't the one experiencing these things first-hand, he does have to deal with helping me through them.  He's always right there, walking beside me as I struggle with whatever is going on.  He knows.  He feels it too.  I can't tell you how much that helps.

He's always been worried about the possibility of having to leave me alone in the world, even before my health declined.  He's just that sort of loving, caring man.  But the thought of me struggling on by myself with my Lupus is almost more than he can bear.  We both pray dearly that nothing will take either of us away from this world, because neither option is at all bearable to think about.  We need each other.  It feels good to be valued that way, Lupus and all.

Last of all is depression.  I feel for him in this fear, because as hard as it must be to spiral into that darkness, it must be so much harder to watch one you love so dearly fall into unreachable darkness.  His fear here is painful to see, because the anticipated agony is so visible to me.  His worry is that I will slip beyond his ability to call back, that I will succumb to these fears and the despair that Lupus weighs on a person.  He is afraid of watching me move beyond the influence of his love.  We always work on problems together, and it would be wrenching to have something like depression remove that.  That is the crux of his fear concerning my becoming severely depressed.

As odd as it sounds, it comforted me greatly to hear him confess to these fears.  I've told him in the past that he shouldn't hide his worries from me, that knowing his fears help me not to feel so alone, as opposed to taxing my emotional strength.  This was a prime example of how true that is.  His opening up to me about his feelings and fears helped me to lean on him, and let him lean on me in return.  Together we'll muddle through.  Together we are stronger than trying to wrestle with these things alone.  I am so grateful and blessed to have him as my husband, my soulmate, and my biggest source of support, comfort, and love.

To all the caregivers out there, most especially the spouses, a deep and heartfelt thank you.

Fears Confessed

Post Soundtrack:  Ow by Stephan Moccio

I have wanted to work on this post (or series of posts) for some time.  Originally I intecded to title it as "Secret Fears" since they aren't things I prefer to discuss, even with my husband.  However, upon reflection, I realized that these are not likely to be so secret after all.  Some of them make a lot of sense, and perhaps others have had an easier time discussing them with their loved ones.  Either way, I'd like to list things I am very fearful of in relation to my Lupus, and explain how I feel about them and why, if possible.  So deep breath, here goes.


1.  Dying

This may seem like an obvious fear, for me it isn't about what you may first assume.  Yes, I'm afraid of dying.  Yes, I'd rather avoid it.  But that isn't my not-so-secret fear.  My fear here is of leaving my loved ones alone and bereft.  It would break my husband's heart to lose me, and would cause the sort of grief to my child that no mother would wish upon their beloved children.  I am afraid of my son being scarred by my death.  I am afraid of how deeply pained my husband would be to face funeral arrangements for me.  I am afraid of the bills I might leave behind, not at all the sort of reminders I want him to have to tackle in the days, months, or years after I'm gone.  I am afraid of dying because of the grief it would cause my family and friends.


2.  Hospitals/ERs

This is a bit more visceral and instinctual.  I am afraid of the hospital because I fear I will one fateful day end up in them.  I am afraid of the dire straits I'd be in that would lead me to be hospitalized.  I have this looming dread and certainty that I will end up in the ER at least some day.  I scare myself with imaginings of the catastrophic series of events that might lead me there.  I still go to the ER or hospital to visit friends, and I am able to shake the creeping feeling of anxiety and worry for myself, but it almost always is there when I first set foot inside.  Think of it like how we all felt about the principal's office when we were in elementary school.  Even if we had good and legitimate reasons to be in the front office or (gasp) the principal's office, it was a place we cringed at having to go near.  It also is related to the first fear, that of dying, because after all, if something went so wrong as to land me in the hospital, that might just be the time it kills me.


3.  Lingering Suffering

I have this lingering dread when I hurt that I never will stop that particular round of pain.  When I flare, I worry that life will be like that all the time.  It can make it nearly impossible to be objective about my state over extended periods of time.  Time slows when I hurt, so the idea of that stretching on and on... it can be nearly unbearable.  This is part of why I don't like the "buck up and live life" attitude.  Sometimes it just isn't possible to sludge through both hurting and despairing to act happy and well-adjusted as some folks seem to think I should.  Not when the pain drags on, and all I can see before me is more of the same.  My spirit quails at the very thought.  Thankfully I don't have to face that, and there always has been a reprieve of some sort.  I simply am afraid that one day there won't be.


4.  Medicines

This is a two-edged sword.  I am both afraid of and grateful for my medicines.  I am fearful of the new medications I may be put on, and hopeful too.  I am afraid of side-effects, some of which could be quite devastating.  (I have heard of some folks whose bodies reacted violently to some of these drugs.)  I am very much afraid it won't work.  I fear it won't work well enough.  I dislike taking so many pills, and am afraid of shots and infusions.  I don't like needles at all, really, and IVs have never gotten along well with my veins.  Taking chemo drugs is scary all by itself, truthfully.  One never wakes up one day and suddenly think, "This time next year, I'll be taking over fifty pills a week."  It just isn't something you want to see for your future.


5.  Being Alone

As much as I fear leaving my husband alone, I also fear being left on my own to face this disease by myself.  I don't feel like I could do it.  The practical side of me insists I'd find a way, of course, but my fears are not generally very practical in nature.  They are seated in my heart, which aches with the idea of dealing with all this alone.  I am so very deeply grateful for my husband and all the support, love, and understanding he provides.  Without that, I would be lost.  Truly.  I need that strength, courage, solace, and support.  Without it, I would surely fall into an unending pit of despair.  Which brings me to my next fear.


6.  Depression

This is one very real, very terrifying yawning depth to which I can easily see myself falling.  It goes beyond unhappiness and beyond logical fears in regards to pain.  It is its own reality, its own world of darkness.  Just imagine, for a moment, one of the worst moments of your life.  It doesn't matter whether it was an emotional one, a physical one, something you saw happen to someone else or something that happened to you personally.  Just for a moment hold that event in your mind.  Now imagine that event happening for the rest of your life.  That same thing, to varying degrees, over and over.  For a few heartbeats, know deep down that you will endure that until the day you die.  That same wrenching, painful, despairing, blindingly difficult event, stretching for the rest of your life.  Sometimes that is how it feels to face a life-long disease.  Some days it is softer, less prevalent, but it is always there.  That sort of knowledge tugs at a person's spirit, leadens the heart, saps the energy, causes a pain all its own.  It's unspeakably hard.  That is why I fear depression.  For me, it could very well become reality if I can't find the strength to haul myself out of that dark pit and press on.


These are by no means the only fears I wrestle with.  I know they are terribly dark and uncomfortable, but they are my life, they are what I face and move past, or try to.  Perhaps you face these same fears.  Perhaps someone you know is struggling with them.  Love, compassion, sympathy, understanding... these are things that help combat such difficulties.  It can't be done alone.  Love those close to you.  Give to them these gifts to help them along.  Accept such gifts, for we all have fears we must overcome.

I'm Still Here

Post Soundtrack:  I'm Running by Yes

Today I was watching a movie that I find quite enjoyable.  It was only my second time watching it, but I was finding it just as entertaining as the very first time.  However, something significant struck me this time around, and I want to write about it.

The movie is full of young people doing active, energetic, daring things.  They are leaping, climbing, jumping, falling, challenging themselves physically.  At points during the movie, I've paused it to go get laundry, hauling it up and down the stairs.  Sometimes that can be difficult or outright impossible.  Today it isn't.  Today is a green day, a good day.  As I was heading up and down the stairs, it occurred to me that there was a spring in my step, a surge of energy that normally is lacking.  And all of a sudden it hit me.

That used to be me.

When I was younger, before Lupus touched my life, I was very active and energetic.  I was bouncy.  I would skip down the grocery aisle with a cart full of stuff.  I went hiking.  I climbed rocks.  I would jump and skip steps, up or down the stairs.  I would take the path less traveled because it was more fun and challenging, and gave me a new perspective.  I loved to run, to feel my muscles flex and the air expand my lungs.  (Just to be fair, I mostly would just sprint for the fun of it, not really marathon-type running.)  I did all of this for fun.  Because I felt like it.  Because it was just me.

Lupus has stolen this part from me.  Stairs are a challenge most days now.  I almost never skip under any circumstances.  I can't run and chase and race my son, like I'd always imagined I would.  I can't go hiking or horseback riding or rock climbing.  I can't even get to the rocks in order to climb them these days!  It's really rather depressing, and I've been struggling with accepting this new me.  Trying to turn away from what used to be and find the new me.

Only problem is, today I realized something.  I'm still here.  That me, the old, energetic me, is still here, inside.  It isn't a matter of "If only I could feel better, I'd find the energy to get into shape and be able to do that again."  It's a matter of, "When I have more energy, I find that part of myself again!"  It's there, waiting, lurking, still part of who I am.  The me that loved to do Tae Bo because it made me feel powerful... the me that laughed and danced and spun with my son for the pure joy of it.... the me that would step off the sidewalk just to step up on a rock and jump off onto the sidewalk again... that me is still here.  I am still me.

There are drawbacks to this discovery.  Part of me is really rather thrilled that I haven't lost that aspect of myself entirely, that it simply is buried under pain and tiredness and illness.  But the flip side of the coin is that it's a part of me I can only rarely glimpse.  It's hidden, buried deep, swamped and overwhelmed by this horrible disease.  It makes me resent Lupus more.  How dare it steal that part of me, that vital and vibrant part of me that used to shine so bright!  It's buried so deeply, my own son doesn't even know that it is a part of me.  If I suddenly was Lupus-free, he would be baffled by my energy level, by my bounciness, my goofy antics, my desire to be out and doing.  He doesn't associate the current me with the real me.  How sad is that?!

So there it is.  The inner me battling with the outer me.  How do I keep myself intact, whole, and sane under these conditions?  Not sure I have that answer just yet, but it's gotta be here somewhere, because there is an amazing surge of joy when I realize I'm still me, that what I identified as myself still exists.  That can't be a bad thing, right?  So I just have to find these nuggets of happiness and hold on tight.  I refuse to lose what I now know is part of me, even if I can't access it.  Just like I refuse to let go of being a horse-lover.  I may not be using these aspects of myself right now, but they are still there, they are still part of my identity, and I will hold onto them tightly as the treasures they are.

I Am The Tiger

Post Soundtrack:  Unto the Burning Circle, by Andreas Vollenweider

I have been re-reading Jennifer Roberson's Tiger and Del series.  It's the first time I've gone through them again since my diagnosis, and I'm finding it somewhat self-enlightening.  Partly this is because several times these books describe excruciating pain, which I hadn't understood before, but do now.  But it was in the fifth book that I ran across a correlation that I had not expected to.  I wanted to share, to put my thoughts into words, so that others could see the truth of them.

Fair warning, I'm going to explain things that will be spoilers if you haven't read the book series and intend to.  This post is meant for those who either have already read the books, or don't care to read them.  This will indeed reveal things about the events in the books that you may not want to know ahead of time.

First, a little information about Tiger.  He's the main character, and the one I am going to relate myself to later on.  He began life as a slave, whipped and beaten and scorned.  When a sandtiger appeared and began to kill the children of the tribe he was a slave to, he took a sharpened stick as a spear and killed it to win his own freedom, but not before the sandtiger left its marks on his body, including four clawmarks across his cheek.  The slave boy took the name of the creature that bought him his freedom, and he became known as Sandtiger, easily recognizable by the marks on his face.  He left the tribe and apprenticed to become a sword-dancer.  He was a very good one, and won himself much fame, a name among men.  Later he faced off with a sword-dancer of equal skill, and ended up with a deep scar in his belly, a reminder of a dance he won but that nearly killed him.

He went sailing to find where his genes were from, and ended up on an island with a particular quirk of culture.  They had priest-mages that embodied magic, that could use magic.  However, it was believed that the magic drove them mad, and so they were shunned from polite society, relegated to their own island, where they became their own world.  They were known for being shaven headed, with blue tattoos across their scalps, rings in brows and ears, and magic in their blood.

Now Tiger had been having growing issues with magic, as he went about his travels.  He would feel uncomfortable prickles and creepy-crawlies when magic was near, and it would make him vomit if it became too intense.  When he came to the island, he began to suspect there was some connection between himself and those mage-priests, but he despised magic.  He hated it, wanted nothing to do with it.  But because of the way that society worked, soon he had no choice.

The mage-priests stole him away, kidnapped Tiger to become one of them, one of their own, to save the public from the danger his supposed impending madness.  Tiger was overcome by their magic, and with magic they removed all scars and indications of his history on his body, putting those on a corpse they left to be found by everyone else.  Then they left him to languish atop a spire, one he was expected to leap from.  Disoriented, befuddled, he fought with that impulse to leap, but eventually leap he did.  He survived, but met the world as a confusing muddle of new sensations.  Sound hurt.  Light was too bright, colors too fierce.  His magic had come alive, and it was uncontrolled, leaving him reeling most of the time in confusion.

As he stabilized, grew used to his new awareness, they began to indoctrinate him.  His old life was gone,t hey told him.  He was never again to be who he was.  He was not the Sandtiger any longer.  He clung to the one thing left him that connected him to his life before... the string of claws he'd worn since killing the sandtiger as a teenager.  In what was meant to be a final step in brainwashing him, his head was shaven, his scalp tattooed.  They cut the necklet of claws from him, then tossed them away one by one over the edge of the spire.  They then cut the pinkies from both his hands, robbing him of a vital key to the ability to wield a sword.  Brutally, they tore everything from him that helped him define who he had been before.

Tiger outwardly submitted to them.  He mouthed the words of chants, followed the rites, performed the tasks.  But inwardly he clung to who he had been, refused to let go.  One night he dreamed a vivid memory of the sword-dance that had nearly killed him.  When he woke, the deep, ugly scar once more carved into his belly.  His magic proved to be a means to regain himself, and he knew he could triumph.  Another night, taking a sharpened wooden stick with him to sleep, he dreamed the memory of facing, wrestling, and finally killing the sandtiger.  He awoke to a still bleeding cheek, now scored once more with four claw marks.  He also found he had killed the man who had worked hardest to remove his past life from him, impaling him with the rudimentary spear.

It was time to leave, whether they wanted him to or not.  He descended the spire and found most of the claws that had been thrown off the top.  He cobbled a raft together, and left the island to find and win back his old life.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So now I will tell you what I realized after I finished reading, the correlation that struck me strongly.  You might suppose that the magic was my Lupus, the source of all my trouble, and Tiger's.  But it isn't.  My pain is the magic.  The very thing I despise, but that helps drive me, make me stronger.  No, Lupus is the priest-mages.  How hard it seems to try to strip me of who I was before.  It piece by piece removes the means by which I defined myself previously.

My long hair?  Snipped short to prevent further agony of spirit.
A horse-lover?  What kind of horse-lover can't sit astride a saddle and ride?!
A gamer?  I no longer can pvp or raid in World of Warcraft.  It hurts too much.  How can I be a gamer when I can't even participate in the basic enjoyments of the game?!
My ability to skate?  Gone.  No strength, no energy, no gracefulness.  It's all gone, wasted away.
My devotion to being a Christian?  Half the time I can't even attend services!
A mother?  What kind of mother is sleeping when her child gets home from school?  What kind of mother flinches from her child's touch?
A home-maker?  My windows are filthy, my carpets are unvacuumed, dust is everywhere, and my hsuband does the dishes and cooking.  My son has to help me do laundry.  That's not the mark of a home-maker!
A wife?  When I force him to take up the slack of my inability to manage the house?  When he must bear the brunt of my tears and rage when I cannot contain them anymore?  When intimacy is rare, because either I am too tired or hurting too much?  What kind of wife does that make me?!

So many things that Lupus tries to wrench from me forcibly, and me without the means to stop it.  Just as Tiger was helpless before the magic of the priest-mages, so I often feel helpless before Lupus' ravages.  As befuddled and confused as he was, having to face a new kind of life, so I feel, seared by normal circumstances that no longer feel normal.  Just as Tiger felt despair and agony of spirit, so do I, as I watch what I was melt away.

But like Tiger, I choose not to let Lupus (the priest-mages) have its way.  I fight to retain what I can of who I was.  Some things I choose to let go, dross to be stripped away and left behind.  I do not need to define myself as having long hair.  That is not who I am, and so it is allowed to fall.  Other things, I redefine.  I cannot ride, true, but that does not mean I love horses any less.  It is the creature I love, not the action of riding.  I still can define myself that way, it still applies, and I refuse to let Lupus have its way in making me give it up as part of my heart.  And then there are the vital things to me, the things that truly define me.  These I hang on to doggedly, refusing to let my short-comings determine my suitability.  I can still be devoted to God, even if I am forced to stay home from services.  I have found other, additional ways to serve as well.  Instead of becoming weaker, I am now stronger.  My bond with my husband and child have grown stronger as they knit themselves to me to help hold me up.  I become more defined in our relationships because of my pain, my limitations.  Lupus will not defeat me.  I reclaim myself.  I acknowledge and work around the pain.  But I will not let it have its way.

Like Tiger, I daily pick myself up, cling to those things that make me who I am, and find my way back into the world that Lupus would keep me from (as the priest-mages attempted to keep Tiger from the world).  I refuse to accept the fate, the life that Lupus wants to insist I must have.  My life is what I make of it, not what Lupus makes of it.  Period.

Acknowledging Feelings Is Not Giving In

Post Soundtrack:  Talk, by Coldplay

Since the start of the new year, I've been struggling with something.  While others were making resolutions to eat better, exercise more, whatever, I was making my own pact with myself.  I'm realizing now that it wasn't really a conscious thing.  It was an instinctive coping mechanism, I suppose, a way of attempting to protect myself and my emotional health.  The problem with making a secret pact with myself is that I was holding myself rigidly to it and it was making me distressed without quite knowing why.

It took talking things over with my husband to realize what I was doing to myself.  I had determined that with the upcoming year stretching out before me, I would keep a positive outlook on my Lupus and general health.  That doesn't sound too damaging, now does it?  However, there is one key aspect of this that makes it completely unreasonable.  I was enforcing this on myself at all times, regardless of my actual feelings.

Sure, there are plenty of people out there, some of whom have gone through similar or worse circumstances, who will encourage people like me to buck up, to stay positive, to put a smile on, to man up, to not let it get me down... and while all of this advice is well meant and generally a good idea, its fatal flaw is something that generally is not addressed in public society.

Being sick stinks.

I don't care how up-beat and cheerful you are, if you are chronically sick or suffering a disease, you have emotions that crop up that simply must be dealt with.  It is essential to our mental health that we admit how unpleasant and horrible our situations are.  Anger, frustration, depression, despair, unhappiness, feeling defeated... these are all natural emotional responses to facing being sick for the rest of your life, however long that might be.  To pretend that they can be brushed aside in favor of a more positive attitude is to invite deeper depression and a lasting sense of hopelessness that can only have a negative impact on our health, even if the outward indications are that we successfully are keeping a good attitude.

Something that is vital to understand is that acknowledging that we have these negative feelings, allowing ourselves to take some time and space to feel them, is not by any means an indicator that we are giving in to our sickness and giving up.  I have noticed that those around me who also suffer from life-long problems sometimes tend to rail against being sick, refusing to do things to take care of themselves because they don't want to be seen as sick, don't want to define themselves as sick.  While I completely understand this perspective, my recent revelation of how I was struggling leads me to think that this attitude of defiance can be more harmful than helpful.  If our idea of fighting a disease means we don't take measures to care for ourselves (sitting down when we are tired or weak, accepting helpful devices that will ease life and make us more active, talking to the doctor about something that might be important or involved with our disease, etc.), then perhaps it is time that we redefine how it is we fight back.  Depriving ourselves of useful, helpful things is no way to defy our sickness.  Depriving ourselves of emotional validity is also not the way to find balance and good emotional health while our physical health wavers.

Please understand, I am not suggesting that being sick gives us the right and reason to wallow in negative feelings.  Allowing ourselves to feel these things is different than submerging ourselves in them.  Everything in moderation, even unhappy emotions.  They have a place in our healing, in our learning to deal with our changing circumstances.  Tears are not an indication of weakness, merely an outward sign of the inward struggle.  Are we not entitled to that struggle?  Have we not earned the right to shake our fist at whatever disease plagues us?  We must allow ourselves these moments of darkness, allow it to seep from us in tears, in words, in clinging tight to the ones we love, so that when we are done we can wipe our eyes, take a deep breath, raise our heads, and feel emptied of those negative things.  It makes us able to face the physical struggle once more, helping us to find the strength to keep going.

So here I sit, having realized I am doing myself no favors by refusing to feel upset that my stretch of minimal pain seems to have come to an end.  I am a little angry that I couldn't stay on the upswing.  I feel despair at looking at a new year that is going to be a constant rollercoaster ride of ups and downs.  But I have only acknowledged that I have these feelings.  I haven't yet let them out.  It's a tricky business, finding the right trigger, the right moment, the right pressure point where it does me the most good to release it all in a torrent of bitter tears.  But it will come, if I let it, and it will cleanse me for a time of all the darkness that I've been suppressing.  For now, I share with all of you my thoughts on my own predicament, one that I see others facing as well.  I hope it helps someone, somehow.