And I’m looking for you wherever I am

Hoping to find you between the sheets

In the bed

Under it

Hiding in the shadows of the dark closet

And I’m looking for you in the food I shove in my mouth

That slides down my throat.

In the drink that swirls in the bottom of my glass

And I’m looking for you in love and lust

In arms and legs and tangled up parts.

In work, in fun, in play.

In childhood dreams

In the brightness of day and darkness of night

And I’m looking for you

But I cannot find whatever I am seeking

Comfort, that fleeting sense of security.

Trying so desperately to please– to find relief

In others’ opinions

In a fantasy that is at odds with all that is real

And I’m looking for you

Sweet comfort

Sweet relief

A cowardice move in a plot not complete

And I’m looking for you like a mother’s arms

And I’m looking for you

And I’m looking for you

 

 

 

Zanzabar

I went back to my psychiatrist yesterday.  Once upon a time I was crazy.  Once upon a time seemed like a lifetime ago.  Things have been relatively stable for so long. Sure there have been battles here and there with depression, lack of energy, not having the will power to interact with people or get out of bed or even take care of my babies. Depression, I’ve heard it called the common cold of mental illness.  And it pretty much is.  As much as a cold or the flu keeps you in bed, slightly incapacitating at times, but mostly just an annoyance that keeps you from enjoying life and work and home and everything in between, it doesn’t break your grip on reality and as annoying and uncomfortable as it is and at the core of it, you are still you.

I usually only go once a year.  Check the box.  My head is okay. Come back next year. Since dad died I’ve gone a little extra.  Extra head checking. Extra box checking.  I’m sitting in his office waiting yesterday.  All the crazy floods back. I watch the girl waiting across from me.  She is obviously not quite right.  She smells funny…her hair is greasy. She looks like it’s been some time since she’s had a bath.  She talks quite a lot.  Inappropriately friendly and interjecting in conversations she hasn’t been invited into.  You can see the side effects from the meds all over her.  The thinning hair, the weight gain, the hormonal shifts oozing out of her oily pores, the jittery limbs of an akathisic body on poorly regulated psychotropic meds.  It is so very hard to tell where the disease starts and the medicine begins. I think how that used to be me.  The one sitting there and it was so easy to tell that there was something not quite right about me.  And I felt a bit nostalgic and a bit proud knowing I had been in this very seat for twenty one years. And I have worked hard to not be an other and to be more like everyone else.  For better or for worse.

Now it’s my turn.  He comes out.  He is ready to check boxes.  A little, not too bright and only a little more motivated medical student comes with me.  She is there to shadow.  To watch how he checks boxes. He is grumpy today.  Distracted by other duties.  Distracted by phone calls from the inpatient unit, by nurses needing orders, by social workers needing placement, by administrative folks and faculty.  Despite being an awesome doctor, today he is distracted.  He has no time to assess, to examine, to contemplate, to forge the patient, doctor connection.  Today, he is merely concerned with clicking away at his computer.  Making sure my boxes are checked and enlighting the student with a tiny morsel of knowledge that she ferociously scribbled in a notebook; nothing google couldn’t have told her just as well.

He asks me the handful of required questions about sleeping and eating and mood.  He half listens and he clicks away.  I tell him I felt better about dad.  That this current issue isn’t related to dad.  That yes, maybe it was triggered by his death, but that I didn’t see a clear relationship between my off kilter head and dad dying.  He says that’s what everyone says who is grieving and has a concomitant mental illness. That there is no relationship.  That the mental illness is a distinct beast apart from grief.  He says it’s not true.  He says this is no relapse.  He says this is grief.  I’m not sure.  It doesn’t feel like grief to me.  But what do I know?  Today I’m just the patient.

He is distracted.  Not listening.  He asks me if I have any questions.  Any questions about what?  We barely spoke a minute or two.  No, no questions from me.  I tell him no, nothing. But before I go, just FYI, I’m hallucinating.  He seems unmoved.  Typing away on his computer.  He tells me I’m not hallucinating that I’m not psychotic.  If I know I am hallucinating, I have insight, and this means I am a ok. No worries. Hallucinations are apparently no cause for concern. Good.  I feel so much better.  He asks no more questions, about the type, the duration, the frequency, the content, the situation in which they occur.  I don’t know, as a healthcare professional all the things I would likely ask a patient sitting in front of me.   But, I am not a doctor.  Like I say, today I’m just a patient. He’s typing away.  He says take these.  Types his prescription for antipsychotics into his computer and it transmits quickly to the pharmacy.  I protest.  The side effects – the weight gain, the hormonal changes, the headaches, the sedation, the depression, oh the sedation, the lack of motivation, the apathy.  I don’t want any of it.  He ignores my complaints.  Simply says, you’ve worked too hard.  You have too much to lose.  Has to be done.  No room for debate.  Paternalistic medicine at its best.

I feel defeated.  It’s like a death sentence. I cry.  Seven years weaning off these damn drugs. Hard, hard years of no sleep and feeling nuts and alternating between manic and depressed and psychotic.  All to start back again.  But I do what he says.  I am a good patient.  A couple days on these things and I feel worse than before I started.  The fatigue is crippling.  Driving is treacherous.  Thinking is so slowed.  My head feels like it is being electrocuted.  One tiny circuit and hair follicle at a time.  My brain is angry.  A million volts of internal energy begging to get out but not able to fire at all.  The dead and disabled body not able to respond to internal stimulus.  Just a corpse with so much pent up frustration dying to get out.  Already I am not myself.  Already I am not my own.  And what is a hallucination or two compared to the sick, horrible feeling these drugs impose?

How do you know when the meds stop and the disease kicks in?  How can you tell the dysphoria and sedation that come from the drugs from the negative symptoms of a schizophrenic disease? Who knows? Today I am just a willing participant.  Today I am hoping for normalcy in a world where it does not exist.

Private Joker, do you believe in the Virgin Mary?

Been thinking today about something the priest was saying at mass this weekend.  The mass I went to was said for my dad, so I think that made me pay extra attention.  It’s sort of strange.  My mom is a really devout catholic, and she raised me to be catholic, too.  But dad was never a religious person.  Toward the very end of his life, he was baptized.  I don’t know if he really wanted it, or he was just scared and covering his bases.  But whatever the case, when he died he was catholic and that at least brought mom some peace.  I guess they say that praying for people in purgatory or saying a mass for them helps to get them to heaven. I don’t know where my dad is other than in the ground, but hopefully the masses and prayers get him one step closer to the pearly gates if he is lingering around in limbo somewhere.  I hope he is content.  I hope he has found some peace.

Religion has always played a big part in my life.  When I was at my craziest and couldn’t sleep I spent my mornings at daily mass and was at church as soon as they opened the doors.  Hyper religiosity was a part of the psychosis.  So in a way sometimes I am cautious to be too religious as it is a kind of door way into the supernatural and the semi insane.  At least the rituals and routine always have felt like home to me.  And of course there is always some doubt in the back of my mind.  What does all of this mean? But what is faith without doubt?

But anyway, back to what the priest was saying.  He was talking about how all sin or weakness or vice boils down to three tenants of the human condition— a need for bodily pleasure, a need for attention, and a need for control.  Thinking about how right he was.  I think about food.  When I’m stressed, I eat. When I’m happy, I eat. When I am sad, I eat. I had been getting better about it.  Before dad died.  Finding more healthy ways to deal with emotions. Stress and joy and sadness and angst and anxiety…eating or drinking or eating and drinking don’t work…sex, only a temporary fix.  Pain, tattoos, piercings, there is only so much one can do without drawing too much attention. I don’t know there’s always something to fill the hole, to fill the void.

According to him, everyone has one of these vices, but I’m fairly certain I have all three.  A need for bodily pleasure, a need for attention, a need for control.  Attention is a weird one.  Most of my life, I have dodged the spotlight.  I’ve been shy.  I’ve been self-depreciating.  I don’t like myself and don’t expect that others do either. But I’m pretty sure there is a part of all of us that demands attention.  That finds pleasure in being acknowledged.  That feels fulfilled when validated by others.

The need for control.  Isn’t that the truth?  It is so hard to believe that something is out of my control.  I demand instant gratification, instant answers, instant satisfaction, and everything in my environment is under my perview.  The driving obsession with control is definitely a constant source of stress but also comfort so deep down.

It makes me look at all of my vices, all of my little flaws, all of my self-loathing, all of the good things and the bad things that make me who I am.  Who am I anyway?  At my core I am a pleaser. All I ever want to do is to do good and make people happy.  I am a self-sacrificer. I don’t know if that is a good trait or a bad trait.  Making everyone else happy will at some point cause hurt feelings for not making everyone happy all at once and leaves me in a place where I am never quite happy with myself.

I am smart, I am kind, I am loving, I am empathetic, I am giving, I am strong, I am powerful. I am a mom, I am a friend, I am a nurse, I am critical of others, I am forgiving, I am loving, I am cynical, I am hard, I am incredibly soft, I love until I break, I am a bottom liner, I am intolerant of poor performance but tolerant of everything else.  I am loving and I am cold I am drama and I am calm.

I love everyone else and I hate myself.  I feel like I am not good enough at anything.  I am smart, But not smart enough, I am not strong enough.  I am weak, I am indulgent.  I cannot say no.  I am consumed with vice I cannot get over.  The words in my head…I am fat, I am ugly, I am stupid, I am shy, I am weak, I am nothing, I am not enough, I am a bad mom, a bad everything.

I don’t even know where I am going with this.  The human condition.  Self-reflection.  I don’t know.  The search for meaning when maybe there is none. The mysteries that lines all that you think you stand for.  The values that just scream why bother.  I don’t know.  The bereavement lady told me to write. Even if it goes nowhere and doesn’t make sense, so I write, senseless or sensible.  I write. Maybe it helps gets me through things.

Gunnery Sergeant Hartman: Private Joker, do you believe in the Virgin Mary?

Private Joker: Sir, no, sir!

Gunnery Sergeant Hartman: Well, well, Private Joker, I don’t believe I heard you correctly!

Private Joker: Sir, the private said “no, sir,” sir!

Gunnery Sergeant Hartman: Why you little maggot, you make me want to vomit!

Gunnery Sergeant Hartman: You Goddamn communist heathen, you had best sound off that you love the Virgin Mary, or I’m gonna stomp your guts out! Now you DO love the Virgin Mary, don’t ya?

Private Joker: Sir, NEGATIVE, sir!

Gunnery Sergeant Hartman: Private Joker, are you trying to offend me?

Private Joker: Sir, NEGATIVE, sir! Sir, the private believes any answer he gives will be wrong and the Senior Drill Instructor will only beat him harder if he reverses himself, SIR!

Gunnery Sergeant Hartman: Who’s your squad leader, scumbag?

Private Joker: Sir, the squad leader is Private Snowball, sir!

Gunnery Sergeant Hartman: Private Snowball!

Private Snowball: Sir, Private Snowball reporting as ordered, sir!

Gunnery Sergeant Hartman: Private Snowball, you’re fired. Private Joker’s promoted to squad leader.

Private Snowball: Sir, aye-aye, sir!

Gunnery Sergeant Hartman: Disappear, scumbag!

Private Snowball: Sir, aye-aye, sir!

Bereaved

So I thought it might be a good idea to visit the bereavement counselor.  I know that hospices have to offer bereavement services for those left in death’s cruel tracks. I’ve been on every side of death and dying.  I have been an oncology nurse, holding hands with those who are brave enough to fight the ugly fight that comes with a life altering, lifesaving, life ending, anxiety provoking illness.  I’ve sat next to those who I have administered toxic drugs into their crying veins and wiped their foreheads as they heaved their guts out into pink emesis basins and blue puke bags.  Rubbed the backs of those in pain; watched and provided presence to the ones who I wouldn’t even touch because just a light caress would cause a pain more immense than I could ever imagine.  I’ve shared in the joys that come when the bell is rung, and the chemo is finished, and one’s battered body has at least temporarily won the fight.  I’ve shared the deep sorrows that ominously arrive when the news comes down that the cancer has spread, the cancer has come back, there are no more options left to try.  The fear in one’s eyes when the realization that this illness will be the cause of their demise has finally settled in.

I’ve been a hospice nurse, rushing in when death is very near.  Rushing in too late, when symptoms are out of control, when pain is too much, when breathing is too disrupted, when fear is heightened and out of control. I’ve been ushered calmly in, when those brave folks who have decided to stop treatment, or to never start it, have determined to make the most of the seconds and minutes and days and months they have left.  I’ve been there so many times at the last breath, at seconds after, holding my cold stethoscope against a lifeless body, proclaiming that life was indeed gone.  Dressing a body with muscles tight with rigamortis, with old, bloody vomit dried in hair, with thick secretions matted into jaundiced skin, with dry eyes fixed in an open state, with old blood, and bodily fluids staining sheets and mattresses that once made a bed of wedded bliss and trying my very hardest to make a body without a soul look like more than a pallid mannequin all decked out for Halloween. I’ve been there myself in death’s cruel wake providing support and understanding in a situation where there is nothing to make sense of.

I’ve been a hospice inspector, determining regulatory compliance with all the rules and regulations and stringent laws that hospices and nurses and healthcare professionals must follow.  I’ve been an advocate for families to make sure that agencies are following the rules they are supposed to be following.

I’ve scrubbed and scrubbed the rotten scent of death off skin.  That smell of decay that never seems to dissipate. I’ve taken home the pain and anxiety of patients and their families.  I’ve cried into my pillow at night for your children who will feel the pain of losing a parent at much too young an age. I’ve tossed and turned with no sleep for the feeling you will have when your spouse, the only love you have ever known will be done and gone and your world will be turned upside down. I’ve made myself sick with anxiety when a patient my own age will soon be gone from this world and she is so, so much stronger than I could ever be.  And my own pain and angst will not even hold a candle to anything your family is going through.  I will sacrifice time with my own children, my own family, and my own interest, to be support for you. But, that is only the smallest little sacrifice I can make at a time when a world upside down will never be turned right side up.

It is Lent right now, and I guess a time of soul searching and looking for meaning and ways to give up things, to give alms, to relieve yourself of bodily pleasures.  I think that being a hospice nurse is the most rewarding career I have ever had.  It is a bit self-indulgent, because by helping you, I realize that every single moment I have is precious.

But anyway, I am going through it all myself right now.  Dad never really accepted death, we never really had a relationship with a hospice nurse.  We just had a blur of the last few days, with a truly horrible nurse who never even learned dad’s name.  He was just a number to her.  Room 4009.  I was a busy nurse on a floor. I worked grueling 12 hour shifts where I never peed or ate and cried in the parking lot before I went home.  And even though I gave it my all, I gave all of my six patients every ounce of energy I had.  I can believe that many shifts had passed where I only knew you as a room number or maybe a last name.  I never knew your hopes or dreams or desires.  I never knew the love you had for your family or your career.  I never knew much beyond your allergies and medical history and how to keep you alive.  And I am truly sorry to you.  Whether it was my fault, or I was just a flaw in a meaningless cog in a broken wheel of a healthcare system, I am sorry.  From the other side, when your own father is nothing but a number, it is painful, it is raw, and it is misery in action.  The clash between the machine that is healthcare and the personal, horrifying experience that is a death denied for so long is the most dysphoric thing I have ever experienced.  All the things I never wanted for him.  The false hope, the over treatment, the over promising, the chemo days before death, the poison in his veins that caused side effects no one should ever bear, the lack of time.  Time for repentance, for making amends, for making sense, or making rights, for living, or loving, and forgiving, it was all stolen from you in a whirl of true American grit.  Of promises of fighting to the end, even when the fight is futile and sure to be a losing battle on all fronts.

So I went to see the bereavement counselor.  To bereave – to take away by force. I guess it was by force, dad definitely did not want to go gently into the cold night.  I hoped that she could offer some insight.  Some small comfort from the other side, I’d hoped she would let me know that I would come out okay.  That life would one day go on.  That the dreams, the nightmares that come would somehow subside.  The last visions of my dad.  A once powerful patriarch devolving into a man in tears, a man afraid, a man holding his daughter in a way he had never done.  A man with synthetic opiates pumped through a metal port implanted in his fragile chest.  A man with artificial tubes draining his dark, almost nonexistent urine and pumping dry oxygen though his blood.  A man swollen with fluid leaking from his veins, so malnourished that there was no protein inside to suck the fluid back in and keep the swelling down.  The man whose lungs were slowly filling with fluid making breathing difficult and noisy.  The man who never accepted help but was now totally helpless, depending on others for even repositioning his limbs on pillows.  The man who always held his head high, but now could no longer summon the will to lift his head from the pillow.  The man whose strong voice had now faded into oblivion and the only sound left in the room while we held vigil was the pumping of the morphine, the breathy flow of the oxygen, the deep rattling in his lungs as he breathed.  The ticking of the clock counting down the time left in life. I was hoping she would give me permission, finally permission to not be the healthcare provider, to not be the oncology nurse, to not be the hospice nurse, to not be the medical inspector, permission to be the bereaved– the one left behind.  The one mourning, the one taken by force.  But I guess it wasn’t all that I expected.  I guess she cannot provide comfort or give me permission to be what I need to be.  She can’t stop the hallucinations that have come running back full force. The voices that tell me I wasn’t enough.  That I am never enough.  Maybe my problems are too deep seeded for her.  Maybe I know too much.  Maybe being on the other side and coming back is just too much to be able to help.  Maybe I just need to walk alone until I find my way.  Maybe I need to help someone else to help me help myself. I am not sure.  It is month three and the numbness has transformed to pain.  And the pain is deep.  And the pain is hard.  And the pain…And the pain…

 

 

Sunday haiku 

Eyes meet, trancelike pools

Lips lock, passion overflows

Electricity.

***

It is a cold day

Death is a welcomed escape

Bleak eternity.

***

There is a void where

Love used to be. His brother

Is named apathy

***

A new day is here

Embrace the warmth that kills night

Happiness is yours

***

Hard work is treasure

Not found but earned in trenches

A strong man burns bright

***

An angry hero

Is a slave to no one but

His own sharpened blade

****

Sweat beads on forehead

Hot breaths tangled in young lust

A thrust will not do

***

Your face is like home

A warm blanket in the sun

The place that you know

***

Leathered and musty

Skin wrinkled, hugging against

Old bones and lost youth

***

Secret rendezvous

Stolen moments lost to time

Night melts into day


Lasts Part II

After all the last times in the lives of a loved one comes the long line of final traditions and rituals.  Dad took his last breath on the evening before New Years’ Eve. Mom was sitting by his side holding him in a last embrace. A first and a last, the medical examiner was called due to a fall in the hospital prior to his death, and we awaited the approval to allow the funeral home to take away his body.

How many times have I participated in this last ritual as nurse? Cleaning the body.  Not preparing it for burial, but preparing it for a journey of a place of healing and hope to a place one step closer to finality.  Every time is a little bit different, though always reverent and thought provoking.  Preparing the body. An intimate last goodbye.  We wash the face, try to caress the lids shut, but rarely do they stay. Clear the mouth and the tongue, but usually the mouth won’t stay closed. Style the hair, wash the body. Attempt to position the limbs in a natural, sleeping position.  Dress the body.  Keeping the corpse warm in outside air that always seems to chill. I have dressed bodies in pajamas, in t shirts, in nice clothes and dresses.  I have helped scooch heavy bodies onto funeral home gurneys and gingerly swooped up old women who seemed to have the weight of a paper doll.  I have escorted parents holding their small bundles of joy to the awaiting hearse. Lovingly saying their last goodbyes and watching the black limousine disappear into the night with their hearts outside their bodies.  But this time was different.  Mom helped the nurse dress dad.  I am not sure if anyone washed his body at that point.  Two old men, hunched over and grey came to escort him onto the stretcher.  I helped them wrap him in a white sheet after folding his arms over his body.  We hoisted him onto the stretcher, seatbelted him in. Covered him with a tattered, red velvet blanket.  I said goodbye. I said a prayer. I wanted to open the window, but the windows in the hospital don’t open. And he was carted away to the funeral home.

I try not to think of what happened to him after that.  The laying in the cold all alone. The embalming process. The draining out of all the blood and replacing it with strange chemicals.  The blood down the drain.  It doesn’t even need to go in any sort of biohazardous waste bin, it just trickles down the drain like water.

Funerals are another last ritual.  Planning the funeral was stressful to say the least.  Family discord became family drama.  Again, thank God for mom, who was stronger than any of us every thought possible. The viewing was so strange.  So many people came. We all stood in a line.  Endless hugs and mandatory handshakes. Forced socialization. “You look great.” “Thank you” “I’m sorry” “Let me know what I can do”  I don’t even know.  It seemed so odd. Meaningless hugs and touching people you haven’t seen in years or ever.

The funeral at the church celebrating a faith that he maybe sorta believed in. The flowers.  The real flowers that are not far behind in death.  The burial.  The lowering the body into dirt.  Full of artificial blood and artificial everything. Dad had a cut on his hand from falling.  It was rather superficial. They filled it in with silly putty and paint.  It was a rather terrible recreation of living skin.

The food.  I guess we have finally come full circle.  We comfort the dying by force feeding and comfort those they have left behind by the same. Maslow’s hierarchy.  Physiologic and most basic needs – air, water, food. What we all need and want the most.  It fills the hole when the holes are empty.

The lasts. The last memories, the last actions, the last thoughts.  The last rituals, the last things we do for the dead are the first things we do in our new lives without them.  And there it is, the circle of life.

Lasts

I guess plenty of grieving people wonder what they could have done differently, wonder if they had done something differently would the dead still be alive.  I don’t really think there is anything different I could have or would have done differently with dad.  I am not even really sure it is productive to think about, what is done is done and in the past.  All the would haves and should haves and could haves are really purposeless. They won’t raise the dead and just cause angst in the living.

But I do think about the lasts. I try to pinpoint the last time I saw or interacted with dad when he was coherent.  Dad was only unresponsive for a day or so, and before that he was walking and talking and conversing mostly appropriately.  But, the shadows of confusion had been around clouding things for months.  He was so good at faking it.  So good at convincing everyone around him that things weren’t quite as bad as they were.  I’m not really sure when the very last time was when I talked to dad when he was dad.  And as I look back, I wonder just how confused he was and for how long.  I wonder what he knew, what he didn’t, and how much was just denial hiding things away deep in a psyche that couldn’t face the truth.

The last food he ate or meal I made him. The night he went to the hospital, I force fed him a few bites of frozen beef stew.  On Christmas, he ate a bite of the turkey he carved and some shrimp.  On Christmas Eve, I made him some fish tacos and he ate a couple bites of Mahi Mahi and some black beans. Two days after Christmas, the last day he was awake, I hear he ate some eggs from the hospital. If I knew it was his last meal, would I have made it more special, with more care, with more love, tend to every detail?  Probably not, we could never figure out if or when he was going to eat anything or what he really wanted.  My saint of a mom carried a protein shake and Capri sun around to every room of the house for dad to complain about and sip on.  She lovingly kept him alive one sip at a time.

The food. Wow, that was such a hurdle.  As a hospice nurse, I can’t even tell you the number of times I have had this conversation.  The body is shutting down and no longer needs food. Lack of appetite is part of the natural dying process. Excess fluid intake can cause more distressing symptoms at the end of life. It is okay not to eat.  No need to force feed someone who doesn’t want to eat.  But the other side of the conversation is so much different.  How exactly did we know he was dying, when he was so good at faking that he wasn’t? How can you ever know if you are withholding food from a person who might have months or years ahead of him? The doctors were surely no help in guiding us with a prognosis. The glass was always half full in their eyes.  Even a clearly dying man might have a chance. Their false hope kept ours alive. And even if we were now focusing on comfort, what is food, if not life’s ultimate comfort?

The last words he spoke. I am not sure what they were.  Should we have recorded them, kept them in a book for all time? Somehow I doubt it.  The last words I spoke to him.  I think might have been I love you, good bye, I’m going to work now.

The last time I asked his advice.  The last time I borrowed his wisdom.  The last time we laughed together.  The last time we worried together. The last time we grilled out or cooked together.  The last time we watched TV together. The last time he drove me somewhere in his truck.  The last time I drove him anywhere.  The last time we went to the beach or listened to music or I rolled my eyes at his black and white world view and not politically correct humor. I don’t know when any of these were. I know he had a good life and we had a good life, and the lasts are really no more important than the firsts or all the in-betweens. The sum of all the actions, I guess that’s all that matters.

I walk the line

sand-line

I was reading this little article today about the prodrome to psychosis. The years or months or weeks before one has a psychotic break and whether medical professionals might be able to predict from the vague symptoms that are a precursor to madness if one will indeed find their way to the other side of reality.  And just how we know when the line has been crossed between the eccentric sane to the just becoming insane.

I remember so well when I walked that same line.  How I wish that someone had picked up on the subtle and not so subtle clues that a young mind had begun to crack, that normal adolescent angst was becoming a teenager out of touch with reality. I wish how I could describe how I felt.  Wish that anyone could spend a second inside my brain to understand and to feel the indescribable.

It’s a struggle to put into words things that never fit into words, things that are bigger than words, but I guess I can try.  It starts with the small things. The fleeting visions from the corner of your eye.  The deer on the side of the road that really isn’t there.  And little things that you see.  A cat darting off, a car coming at you, the snake that is really a stick, a shadow from nothing at all.  The hearing things that aren’t really there.  Your name in the wind, a whisper, a sigh, and an unkind word from a stranger you cannot quite see.  The feeling things that aren’t quite real.  Electric bolts in your toenails, skin crawling with tiny little ants or fuzzies that are barely perceptible but quite distracting.  The things that don’t taste the same.  The water that tastes dirty, the milk that tastes rotten, the chocolate that tastes like rusty nails. The food you can feel sliding down your throat and sitting in your stomach. The food you can feel being digested and moving along your guts. The smells that aren’t real. The smell of babies and peaches and fresh cut grass that your nose tells your brain is true, but none of these things are around.

The thoughts…the thoughts are maybe the worst of it all. The little things that first seem okay.  That seem like you are smart and interesting and deep and introspective. You wonder about the meaning of life, of what you are doing here, of why any of this makes any sort of sense.  Only it doesn’t make sense. Everything made up of all the tiny bits and pieces of life as we don’t know it.

The people who are talking about you. The whispers, and what are they saying, you are not good, you are not right, you are crazy, and you do not deserve what you have. The buzzing, the air conditioning, the ambient noise that somehow you can decode a message in. The noise that is not meaningful, but to you has meaning.  The conversations, the sitting in the restaurants and being hyper aware of the three or four or eight or ten conversations going on around you.  You can hear every one and somehow simultaneously listen to all of them at once. The hyperawareness and hyper acute senses, everything you taste and feel and touch is magnified by thousands.

Being fixated on a single idea, of church, of God, of religion, of being real, of being an illusion, having big, big ideas and not being able to express them. Your brain rotates to bipolar extremes.  A dense fog.  Your head and body are trapped inside of drying cement.  There is an aching pain in every tiny muscle fiber. Thoughts pushed out like toothpaste too thick to flee the tube. Everything is so slow.  Everything is dull and grey.  There is no fight or flight.  No sense of urgency.  Nothing to be excited for.  Devoid of emotion.  You exist in a state that is not quite real. A state of disassociation and numbness.  But even in this dulled state, reality is altered, but awareness is not.  You are able to realize that something is wrong and begin to feel yourself slipping further from the world all those around you are experiencing.

The other side of the coin is the amplification of emotion. The angst, the anxiety.  The pounding away of your heart and hearing every thump, thump, thump. The whooshing of your blood in time with your beating heart is perceivable as an ever present buzz in your ear. Whoosh, whoosh, whoosh, and thump, thump, thump. The cold sweat on the back of your neck.  The feeling of every goose bump pushing up through prickled flesh.  Being aware of every small hair on your body.  The whirring of the air conditioner, the ceiling fan, the ambient electrical noise that is blaring like a foghorn.  And something embedded within the sound.  A whisper, your name, a hello. The cold air is colder. Hot food is hotter. Energy abounds.

And here it is.  The blurred line between reality and not. The place where the eccentric meets the psychotic. Where functionally abnormal becomes pathologic. The place where you could turn around and march out, well maybe not march, but be dragged out of with some effort against the place at the end of the rope, where being lost in your own mind is a torture all its own.  Can you identify it? This place that if you have never been, you cannot describe or comprehend.  Maybe, it would sure be interesting to find out. The aura of a psychotic break is so much more benign than the aftermath.

A month makes 

It has been a month now since dad died.  Some folks had asked if Id share the euology I delivered at his funeral so here it is…

What can I possibly say about a man who has always been larger than life? Just his name alone is enough to bring with it a sense of pride and honor.  Of course he’d be the first to tell you he comes from good stock.  And my brothers and I come from the same good old Johnson stock.

My dad was a great man. His joys in life were simple. His family was his life.  My dad was a provider, a gentlemen, a stoic giant, a fierce fighter, a devoted husband, and a hard worker. He loved the Redskins, beach music, the ocean, and cold beer. My dad was a no nonsense and get the job done type of man. But he also had a love of practical jokes, messing around with his coworkers on their many business trips, and could deliver a joke with a poker face like no other.

Dad married the love of his life in 1980. My mom, Mary and my dad dated since high school.  You’d never find a more devoted, loyal husband. He fondly told stories of visiting her in college and scraping together gas money on the weekends to see his love. Maybe I am partial, but they had three beautiful children, Paul #3, Stephen, and me. Dad was the most dedicated husband you’d ever find. Early in their marriage, he drove mom to church on Sundays, drove her anywhere really because she didn’t drive.  He would do anything on Earth to make his bride happy.  He recently told me a story of the early days of their dream dating, two pitchers of beer and a trip afterwards to Burger King to fetch his bride a whopper junior with cheese and extra everything. Even when dad was nearing the end of his fight with cancer, he still opened the doors for mom and never let her walk behind him anywhere they went.  Ladies first.  Dad always said he never got a chance to talk much, because there was no time to get a word in between his two girls. Apparently mom and I never shut up. But in reality, like his own father, dad didn’t speak unless he was right. When he opened his mouth, you knew you’d better listen.

My dad instilled a work ethic in me like no other. He worked since he was fourteen years old, as a paperboy, a cook, and ultimately for the army space program office in the self-described role of budget weenie. I am not exactly certain what his work entailed.  He couldn’t tell me for 80 years or until he died and if he did tell me, he’d have to shoot me.  But, I am pretty sure his official position was HMFIC. You might have to google that one. He frequently echoed the sentiment, the only excuse for nonperformance is death.  One that all of his children, as well as himself took to heart. You don’t call in sick unless you are dead.  And even when you are dead, you had better just be late. Dad expected no less from us.  He wasn’t a lover of education or school, but he was so proud that all of his kids had at least bachelor’s degrees all the way up to Paul #3s most recent doctorate degree.

Dad loved music, especially Linda Ronstadt in roller skates. He played the trumpet in the marching band in high school.  He sat through the obvious thrill of his kids learning to play trumpets, clarinets, and oboes. We spent so many nights in the basement listening to his records.  He had a stereo the size of a dinosaur with his records, his cassette tapes, and enormous brown speakers.  We listened and sang to Jimmy Buffett, Warren Zevon, Led Zeppelin, the Who.  He pointed out the flute in Jethro Tull albums and the obvious genius of Frank Zappa.  Learning the lessons of yellow snow was something every kid should know. I sang back up to Cheeseburger in paradise and belted out Youre no Good and Stairway to Heaven while he hummed along.  Later in life, dad’s iPod was always on at the pool filled with classic rock and beach tunes.

My dad helped to raise three awesome kids.  He always loved to brag to anyone who would listen about how great his kids were.  He raised a nurse, an engineer and a computer guy.  Nothing brought him more satisfaction as did talking about his kids and their accomplishments.  Well, that may not be entirely true, the only thing he loved more than his kids were his six grandkids.  He always said that Johnsons love babies and love his babies he did.  His grandchildren lit up his world.

Dad knew the answer to almost any question I could think up. He was the one to call when you needed to learn about timing belts or variable valve shifters.  He could answer anything about mechanics, or household woes, or money quandaries, directions, and just about anything else a dramatic daughter might conjure up.  Dad fixed so many smoke alarms, cars in ditches, broken toilets, garbage disposals, gave me advice about taxes and jobs and being a grown up.  It makes me sad to know I won’t have dad on speed dial any more to give me a healthy dose of common sense.

A few months ago, I made a little list of some of the things that I learned from my father. In no particular order, I’d like to share a few of them with you.

The game is over at 6:00. There is no good reason to be in the neighborhood street after 6 pm.

As kids, we got home from school and played outside.  But the game was over at six, no matter where you were or what you were doing, when dad whistled out the front door for the 6:00 warning, you had better get home.  After that was time for family dinner and homework and bed.

 

When cooking, it’s all about the pork fat. Isn’t that self-explanatory?  There are not many proper dinners you can cook up without bacon grease.

 

Use the right tool, knife, utensil, etc. for the job. My dad would cringe if he saw you using a serrated knife for the wrong purpose. Forget about using salad tongs for the ice and you’d really be in for it if you tried to eat dinner on a paper plate.

 

No respectable person makes phone calls after 9:00 pm or before 9:00 am. Let the phone ring at the Johnson house at 9:01 and just see what happens.

 

Work harder and longer hours than everyone else and you will get further. My dad was such a hard worker.  He got so much joy in being the provider for his family.  He worked so hard and took great pride in his work.

 

Respect is earned. My dad treated everyone he met with respect, but after first impressions, respect had to be deserved.

 

A household is not a democracy. He ran a tight ship.  We had a wooden spoon over a shelf in the kitchen to keep us in line.  When dad spoke, we listened.  When dad spoke, everyone listened. He was the boss for sure.

 

As I mentioned previously, the only excuse for nonperformance is death. Exactly. My dad gave 100 percent until he died. Give it your all or don’t do it at all.

 

If you break something, you buy it, and you put it back together, and you apologize.

I remember driving to high school one morning.  I lazily skipped clearing off my windshield of ice and ran smack into the neighbor’s mailbox.  My dad sent me over to the neighbor’s house and made me tell him what I did and apologize.  Then I promptly took my small paycheck from Sears to purchase some cement and a new mailbox.  Beth had a date with a post hole digger.

 

You can’t really drive a car unless you can do it barefoot and with your knees and no hands on the wheel. Dad was an excellent driver.  He had to be, because both of his girls put together only made up about half a decent driver.  And even though he never could manage to teach me how to drive a stick shift, he made sure I could drive barefoot and with my knees on the wheel.  After all, no self-respecting Virginian should be wearing shoes from Memorial Day to Labor Day anyway.

 

Women should act like ladies and be treated that way. Dad was a true gentleman.  He made sure my brothers knew that girls should never pay for a date.  He opened doors for mom.  Dad made it quite clear that anyone who wanted to date his daughter would be in for an inquisition and an introduction to a 12 gauge.

 

The most important thing a man can do in life is provide for his family. The most important thing a woman can do is be an amazing mother. Dad was the ultimate provider.  We never wanted or needed anything we didn’t have.  He worked hard and made sure my mom had everything she needed to be an awesome mom to her three kids.

 

A stopped clock is right twice a day. This one is a maxim from his own dad, Paul Johnson #1.  Even the dimmest bulb in the bunch can get it right sometimes.

 

Only speak when you know you are right. Dad had no use for useless gab or guesses.  Speak with authority, be decisive and never open your mouth unless what is coming out is important and correct.

 

Don’t settle. Dad taught us to be the best.  Not to settle for anything less than what we worked hard for and deserved.  And definitely don’t waste your money on products that are no good. Mom never really learned that one.  Purchase quality things and they will last you and not disappoint.

 

Don’t apologize unless you have something to be sorry for. There is no shame in apologizing for something you’ve done wrong.  But never apologize for your feelings or your thoughts or your decisions.

 

Always share your carrots with the horses. Dad loved animals.  One of my favorite memories of him was feeding the horses next door apples or sugar cubes or carrots.  You can find out a lot about people when you see how they treat their animals.

 

Pain can be ignored. I have never in all my life encountered a man as able to power through pain than my dad.  Before cancer, he suffered from gout and arthritis.  And even when his knees and feet hurt him so badly that even a bedsheet lightly over them tormented him, he still commuted to work, walked without a cane or a walker or wheelchair, and took care of everything that needed taking care of. After cancer took a fierce hold on his body, and invaded his liver and lungs, even after he had colossal surgeries at Johns Hopkins that had never even been done before, he never wanted to take pain medicine.  He could always “be a man” and get through it.  He fought so hard till the very end. When lesser men would have long given in, dad was a fighter. Even though tumors had invaded his body, his organs were quickly failing, dad drove to see the Christmas lights on Christmas Eve, and he carved the turkey on Christmas only five days before he died.  Just two short days before his death, through immense pain he summoned the will to walk and eat breakfast. There was nothing in life he couldn’t overcome.

 

My dad was a great man, maybe even a legend.  These few words don’t do his life justice.  But anyone who met him would tell you that he was a gentle giant.  Through the tough exterior, dad was kind and loving and devoted to his family, his job, and his country. I guess it’s best to leave you with the words to one of his favorite Buffett tunes…

Writing his memoirs
Losin’ his hearin’
But he don’t care what most people say
Through eighty-six years of perpetual motion
If he likes you he’ll smile, and he’ll say,
“Jimmy, some of it’s magic, some of it’s tragic
But I had a good life all of the way.”

Saggy bumper

Old saggy bumper.  She was a beauty of a truck. 93 Toyota…I don’t know anything about cars, but I am pretty sure there wasn’t even a model name.  It was just the red trucky, saggy bumper.  My dad’s weekend truck that drove him back and forth to the dump.  I had recently acquired the driving rights to this fine specimen as I had totaled my first car I had purchased with my hard earned teenage paychecks working at Sears in an unfortunate event involving a sneeze and a light post. Dad used to say it was a four cylinder truck, but only three worked.  Had to turn off the air conditioner to make it up a hill, but something about that truck just felt like home.  Parts falling off, oddly uncontrolled vibrations beneath my butt in the worn out seat, a seat belt that wouldn’t retract, and a radio that would only tune to static, but it was comfortable and familiar.

I was cruising down the road in that ride, elbow flung out the window and left knee propped against the door, one thumb on the steering wheel.  I can almost hear dad now, feet on the floor, both hands on the wheel, 10 and 2, but where is the fun in that?  Being the timid and somewhat poorly skilled driver that I am, I stopped at the yield sign in front of me just to double check that no one was coming.  Fairly certain I was okay to merge, I started out into the road, but was startled by an oncoming car in the far lane who never had a chance in hell of ever being in my way and I hit the brakes.  Just as I stopped for the second time at that yield sign, came a jolt from behind.  My head flung forward then back, my contorted knee slammed against the window crank, and my chest railed against the seatbelt with too much slack loosely attempting to restrain me.  Oh crap, dads going to shoot me.

I pulled over, accompanied by a shiny new American truck and an even more American man in a cowboy hat.

“Sweetie,” he said, half with a draw of Southern charm and half sarcastically pissed off. “Don’t look like too much damage there.  Don’t think there’s no need to call the police.”

God, I was thinking.  I don’t know what I am supposed to do.  So, I just smiled and nodded.  Maybe not too much damage to his big shiny ride, but old red had half her little bumper was dangling into the street.

“Let me get you some information, honey.” He said quickly, digging for something to write on and pulling out a napkin that had seen better days. “This here honey is a dealership car. You know Bill?”

Hell no, I don’t know Bill. What on earth is this hillbilly trying to pull?

“You know Bill? Everybody knows Bill. Bill Marlborough down in Bristol, Tennessee. M-a-r, you know Marlborough, spelled like hamburger. Only you take out the H and make it an M, add an rl, and take out the u altogether. He’s going to take care of everything for you, sweet cheeks.”

All the while Tennessee cowboy is scrawling away on that tattered napkin, the name of mystery Bill and his likely fictitious phone number and dealership name.  Cowboy thrusted the napkin in my hand, gave it a quick firm shake and smiled a genuine almost fully toothed grin at me.  “Just give Bill a call!” He shouted as he climbed into his dinosaur of a truck and sped off around me.  Just me and saggy bumper on the side of the road.  Well, guess it’s time to go home.

Old Bill turned out to be a good guy after all, he fixed Red up with a shiny new bumper.  That’s how she got her name.  For some reason, I was always getting into to rear end accidents.  Told you I was a stellar driver. Trucky always looked a little run down, well run down’s not the word, well-loved and worn in.  But as tired and rusty as she was, she always had a shiny new bumper intact, and so the name saggy bumper stuck.