9/17/13

Inside the mind of Lyme


I woke up again this morning in a state of panic.  My mind is going so fast, flashing with memories but  of nothing I consciously recall.  I don't know what to call it….hallucinations?  Strange, random images and unfamiliar faces behind closed eyes flashing at lightning speed, accompanied by totally irrelevant thoughts; my heart is pounding and I think to myself, "what is wrong with me? Am I crazy?"  I lay in bed, curled in a ball, praying to God for it to stop; for me to get better; for a miracle.  I tell Him I can't take it anymore.  After years of pain, fatigue, loss, and now morning after morning like this.  For hours, again and again, I beg him. I ask just to feel normal again; forgetting what I used to pray for...a nice house, financial security, someone to love me; but just  to feel normal!  Then the realization that these prayers have gone unanswered all this time, brings  the feeling of absolute abandonment.  Abandoned first by my doctors, the medical system, then friends and family and now, even God…My new prayer; a way to finally put an end to this hellish existence.  Permission to just think about the unthinkable.  Acknowledgement that nobody could be expected to endure more of this.

I feel like I am screaming yet no one hears me.  I take pride that I have come this far, fought this hard. I am confident that most in my shoes could never have held on this long. But I am so tired and yet no one knows just how tired I am.  The pain is 24/7 and has been for years now.  Five years next month. It has almost become "acceptable" as it is part of me now.  I am numb to it.

I try to put on a happy face, to complain very little.  Perhaps,that's why even my family has no idea how much I am hurting, how scared I am of dying, how hard I am fighting.

An occasional good hour here and there it seems is always perfectly timed to the occasional visit by my sister, a neighbor or the not so rare doctor visit.  Thirty minutes later I am holding onto the sides of my bed, spinning beyond imagination, shaking with tremors and unable to see anything but blackness.  Not that I have to prove to them I'm sick.  I just wish they knew the fighter inside me, not just the person who claims they never feel well and is always tired.  I and I alone know I am a warrior.  There is no other word for it. Only those with Lyme truly know, and every single one of them would agree.  Most say, in their experiences, cancer is a walk in the park compared to this. Why then, are those with cancer cheered on, offered sympathy, given help, acknowledged, sent cards, baked casseroles...and we labeled the lazy chronic complainer with some non-disease?  Why am I not sent get well cards?  And, how can my family laugh in the next room while I lay here crying because I am so sick? I do try to tell them.  I try to tell them when it gets really bad.  I ask them what to do, tell them that I'm scared.  They respond by saying" it will pass, it always does."

They say they believe me.  I don't believe them.  If they did, that would make them monsters.  How could anyone that claimed they loved me, sit idly by and watch me suffer so intensely? Maybe they just don't realize how serious it is.  That must be it. I have to believe that.  I know they have not felt pain like this, trust me.  Nor have they spent countless hours pondering over what they could have possibly done wrong to deserve such a fate.  It consumes me.

Nobody gets it.  And when I hear someone complain of boredom after being stuck in the house after three days of rain, I know they can't possible understand.  I cringe when I hear someone say they nearly went crazy after being sick in bed for a week with the flu.  And I know they can't comprehend what it is like to lose everything while they sit in their homes, among all their possessions, laughing with and entertaining their friends.  I am lost among them.  I no longer belong.  The former "me" that did is long gone, never to return.

I get up everyday and try to be positive.  I do. I try not to be consumed by anger.  And am successful most of the time.  But every now and again, I fail; I become so furious, so full of hatred, and feel so cheated and defeated.  Anyone that knows me, knows that is not me.  But can anyone begin to imagine losing it all?  I have lost everything.  All my possessions.  My career, income, livelihood.  My security, my home and everything in it.  My independence and my ability to care for my son.  And all but one or two friends.  I could just scream when I hear someone complain about money.  I doubt anyone could begin to imagine what it is like to truly have zero income. zero!  When I see people throwing away money on trivial things and non-essentials  I actually feel nauseous.  The day my son told me he wanted food for his birthday was a day I wish I could forget.  When I hear someone nag about their spouses I just want to cry.  It has been many years since someone has even held my hand; what I wouldn't give for someone to be fighting alongside me.  Some people just don't know how good they have it.

Yet, I can't seem to sit one of them down and explain to them what it is like, much as I wish I could.  I don't exactly know why; maybe because I was raised to always put on a strong front.  Never to air your dirty laundry.  To be thankful for what you have.  I can't blame them for not understanding but it is tearing me up inside; my own family doesn't know who I am anymore.  I feel judged by them all the time.  i wish they could peek inside me and see the strong spirit that fights so hard day after day.

I feel the need to talk to God, but have run out of things to say.  I keep praying and praying for the same thing and can't help but feel abandoned by Him too.  I know there are people that have it worse, but not anyone in my circle.  When I hear things like everyone has their share, or you wouldn't trade places I want to laugh.  Am I feeling sorry for myself?  I don't think so.  I am trying to share what it feels like to be at the absolute bottom of rock bottom and unable to find a way to crawl out for even a breath of fresh air.

If anyone dare call me depressed, I urge them to take a look at their lives.  Examine everything they have, then imagine it all gone in an instant.  That is where I am now.  I have nothing.  I am nothing.  I have no life.  I have no more dreams; not ones that are likely to come true anyway.  But I didn't see my life disappear in an instant.  Instead, I was forced to helplessly sit back and watch as it tortuously was stripped away, little by little.

God, it is time for me to have another chance.  It is time for something good to happen to me.  It is time for my miracle.  I have been more than patient.  I have endured more than most.  I have a lot to give and so much more to live for.  But I need a sign that there is still hope and a life waiting for me.  I have already waited so long.  

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