The Forgotten – a poem and blast from the past

I wrote this in 2006….you may repost anywhere you like as long as you include the copyright line at the bottom

The Forgotten

I am not crazy.
This is not all in my head.
I am not making any of this up.
I am not a hypochondriac.
I do not seek attention or fame.
I do not have borderline personality disorder.
I don’t need a psychiatrist or a psychologist.
Why do you admonish me when it is you who does not understand?

None of this is my fault.
How can you say that my disease does not exist?
Why do you say it is not in my town?
Hush, keep it down or panic will ensue.
People might move away.
Or worse yet, never come and visit.
We can’t have that can we?

I stand here before you as a testament to my illness.
I am a helpless victim of a cruel disease.
And an even crueler system.
Your misdiagnosis is designed to render a pill so I go away.
You choose to ignore me and I will go away.
Eventually I will die of a disease called ignorance.
If the illness doesn’t get me first.

Some die by their own hand out of desperation.
Many have tragically lost hope.
You see the dark circles under my eyes and say that I must be tired.
You have no idea of my tiredness.
Not half as tired as I am of hearing that I don’t exist,
that I am invisible, that I am nuts, or that I do not matter.

You say you don’t believe in my disease, but it believes in me.

Let’s take stock of all my imaginary illness has given me.
The gift of my experiences and the toll they have taken.
I am allergic to most foods, and many medications but not really, my body just thinks it is
I am not a basket-case, but I feel like one.
I have seen 10 doctors, or 20 or 50 or 100.
None will give credence to me.

I have every illness known to man except that which I truly have, according to them.
I don’t smile because my face has nerve damage.
You interpret it as looking mean instead.
I try to communicate but it is work for me.
You think I have an attitude problem.

I can eat only 5 foods for months at a time, or sometimes only one, but this isn’t a diet.
You don’t understand and you make me feel bad about my food “choices”.
I run screaming out of the store because the light bothers me.
There is terrible bone pain, I can no longer use my limbs.
I have no sex life.
I suffer panic attacks and palpitations.
I have a heart block, an arythmia or chest pain;
fatigue so profound I feel like the walking dead.
Hello you say on the phone in my moment of silence.
Did I hear what you said?
Forgive me I’m quietly seizing; blanking out, momentarily ceasing to function.
You hardly notice, you think me not listening.

I wear sunglasses in the daytime not to be fashionable.
I can’t stand sound at any volume or I cannot hear at all.
Motion sickness plagues me, my stomach my enemy.
Turn me in circles and I get confused, disoriented, dizzy.
I struggle to regain my physical strength.
Desperate for human connectedness.
A kind word, an understanding heart — save me from this isolation I feel;
an unwelcome blanket of silent uncertainty.

You say I want for attention.
Tumors appear in me for no apparent reason.
My organs are failing while you call my blood work “normal”.
My ears ring incessantly; my eyes no longer work or I can no longer see.
My head hurts worse than any migraine I have ever had, even my hair hurts.

I wince when you touch me, when you kiss me.
I need reassurance but your embrace is painful to me.
Or I find none at all, feeling your rejection from lack of support, because I am too much work;
because you are tired, or you have had a long day, you walk out on me.
I have no value to you, because you cannot relate.

Strange sensations, odd tastes, smells that are not really there.
I have lost my hair and not from bad hair genes.
Lost weight, wasting away as nourishment escapes me.
I feel biting, stabbing and jabbing pain in my body.
Nails of fire are burning my skin, a red-hot poker.
Bugs crawling on and under my skin.
They bite me relentlessly but I cannot see them.
I am being eaten alive, from the inside out.
Excuse me while I die, one cell at a time.

My immune system is thwarted by something I cannot control;
my brain manipulated, my body stressed.
This thing controls every aspect of me, I see the world through a filter.
My thoughts are dark, sometimes suicidal, you call me insane;
or elation, roller-coaster mood swings which have no meaning.
I am so cold, hypothermic, or feverish, wet from night sweats or chills.
My joints and muscles hurt, ache, throb, burn, and are swollen.
Who are these people I am hallucinating?  I know they do not exist.
Yet I see them before me, standing there, threatening me.

I am paralyzed, I am incontinent, I am a shell of the person I used to be.
I can’t breathe, or eat, and I can’t think straight.
Words fly out of my mouth that I did not choose.
I am dyslexic, I am speech-impaired, I cannot speak at all.
I forget where I am going, what I am doing, and who I am.
I am confused and frightened.
I lose my temper from nothing at all, and I fight with everyone for reasons I can’t explain.

The night hours are long and I cannot sleep, or I sleep longer than I should.
I fall asleep in the daytime and need rest throughout the day.
I am afraid of slumber, nightmares disturb my sleep.
I stumble along, knock things over and fall.
You tell me to be “careful”.
I have no perception of myself in time and space.
I cannot control my own movements.

I am called disabled by some; others refuse to label me that.
You accuse me of crimes I have not committed;
like failure to work, failure to pay child support, failure to show up places;
Argumentativeness, Impatience — like it is really a choice I would make.
You reject me because I am unreliable; because you don’t understand.
I am sorry I missed your family function, or dinner party, or funeral, I was too sick to attend.
You say I am not sick and my disease is but my imagination.
I have rashes on my body that are hideous and uncomfortable.

I cannot eat; my toilet is a valued friend.
I am hyperactive, or a slug, laying about each day.
I have trouble learning new things; or remembering them.
When you poke me with a needle, my blood won’t flow.
I am so tired of the tests, the needles and the drugs.
The home remedies, the sure-fire cures; and emptiness of the unknown.

I am spastic, I twitch, I jerk, I tremble, I shake.
I can’t lift a milk carton, or dress myself, or comb my hair.
My teeth hurt, my gums and nose bleeds.
I have bruises all over my body and I don’t even know why.
When I look in the mirror, I no longer recognize the image there.
The person I was is now a shell of my former self.
I have lost my children, friends and family because they just don’t understand.
Maybe I can no longer work, uncertain how I will survive.
I’ve lost my livelihood, my home, my finances, my health, and my future.

I cannot get disability because my illness is not on the list.
Or maybe I have disability but it still doesn’t help pay the bills.
I have filed bankruptcy or live on the verge of it.
I cannot get insurance because I am ill but no one will say that I am.
I cannot go to doctors because they don’t want me there;
or I have the wrong insurance; or worse yet, none at all.
Family courts have punished me, taking away my children.
They tell me I am playing games, because I cannot work;
because I endlessly reschedule hearings; because I struggle with my memory on the stand.

You accuse me of heinous crimes.
You ridicule my supposed disease.
And chide me for not having proof;
and take advantage of me to get what you want, my children.
Because you can and they let you, because I am ill.
Maybe you found me wandering in the street; speaking insanity, out of my mind.
You accused me and put me away.
Shame on you.

Yes I am still stick.
Is this taking too long for you? I am sorry.
I don’t know if I can be cured.
No there are no tests to see if I am well.
I cannot find a doctor to treat me; or diagnose me; or care.

This never should have happened.
It could have been avoided.
If you had just listened to me and tried harder to help.
I can no longer drive, walk, think, write, or function.
What is a normal life?
I have a service dog; or maybe I can’t afford one.

I can’t stand up or walk straight.
I am depressed.
I am alone.
I am lost in a sea of despair because no one sees me.
I am invisible though I stand before you.

You close doors in my face and send me away;
because you don’t want to deal with me;
Because you say three weeks is enough and I should be cured; or 10 days or 30 or 100.
Or worse yet you experiment on me without knowing what or why;
because you are afraid of being a doctor; of losing your license to practice.
Hesitant to being compassionate or afraid to pass a Bill;
to take governmental control; to assist your constituents.
Because no one wants responsibility; to be forced to acknowledge that I am ill.
Like it is some sort of a crime.

I did not choose this disease.
It chose me (oh lucky me).
To you I don’t look sick, but I assure you that I am.
Outside I look fine, but inside I am screaming.
I am angry.
I have a right to be.
Let me explain — I am the forgotten,
I have Lyme.

©2006-2013 by PJ Langhoff


4 thoughts on “The Forgotten – a poem and blast from the past

  1. OH. MY. GOD. I read about me. Then when it wasn’t about me, I understood my six year old sick son. It was about my friend with lyme who suffers differently than I do. I understand her. I did, but now I do. More. I heard what he thinks of me. In there. This has it all, all of the symptoms; the emotions.
    Lastly. PJ. Can this be shared???

  2. I think many of us that have been fighting this battle can find ourselves somewhere in this poem. Thanks for sharing.

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