Home, Once Upon a Time

One of the things I have found about being so sick is a tendency towards nostalgia about bygone days.  Another way of putting it would be wallowing in the past.  It can be an exercise in fond memories or a descent into self-pitying regrets.  If I am not careful, I can go way too far into darkness, where to re-hash sadder times is pointless.  It is one thing to learn from one’s mistakes and move on, quite another to relive the same sorrow over and over, to open that book of pain and keep reading.  I try to find a balance, but it is hard.  Pity parties can be such fun.

In a particularly idle moment the other night, I typed into Google the address of the first apartment Dennis and I lived in together, rented in an act of daring months before we were actually married.  It was on East 65^th Street in Manhattan, a locale with a usually chic cachet.  But our apartment, on the top floor of a five story walk-up, was a classic Barefoot in the Park pit. I used to joke the tiny one bedroom was the only tenement on the upper East Side.  There was a single sink in the place, immediately to your right when you walked in the door.  The tub had once been in the “kitchen”, a five by five open space with a refrigerator against the wall along with a teeny, ancient stove that had to be lit with a match.  There was a little counter bordering one side with open shelves underneath.  No cabinets.  Crude plywood enclosed the tub.  There was no door on that space, so I hung a curtain over the opening.  Very Bohemian.

The toilet was in a separate little closet all by itself.  It had a skylight, which leaked when it rained or snowed.  The floors were the original wide planks, painted white in the bedroom and covered with hideous dark brown faux wood vinyl tile in the little space that passed as the living room.  There was actually a wood-burning fireplace in the bedroom.  We often had to use it for heat as the building’s boiler was frequently broken.  There was no closet. 

Yet I loved it.  I was thrilled to be living in the city.  Every step on the long walks to and from the subway reminded me of how happy I was to be back in New York, where I had grown up before my parents moved us to New Jersey when I was 12.  That sense of energy and unlimited adventure was what New York represented to me.  But as pleased as I was to be there, I have no photos of the place, except for one of me smiling, sitting on the bed with our puppy in my lap.  All you can see is the wall behind me, so it is pointless to even post it here, except that it shows I was happy at least once.  Mostly when I remember that year it is through a mist of pain and disillusionment.  Our brand new marriage was going badly and I was shattered.  I had been so certain that my all-consuming love for him would be enough, but nothing could heal the broken history he carried with him.  Neither of us knew how to be a spouse, so we did what we had learned.  We each stayed in our family roles:  I put on a relentlessly cheerful face and he engaged in deeply wounding abuse, the way he had always been treated and the way his family treated each other.    

I was working as an editorial assistant at Avon Books in the landmark Hearst Building on 57^th Street and Eighth Avenue.  It should have been a dream job for anyone who had been an English major, but I hated it.  As a guileless kid, faced with the back stabbing and cut throat ambition, I was completely out of my league.  By that time I was expecting our first baby and that was all I cared about.  I just wanted to be a mother.  I had no other career goal.   But if I was unhappy at work, I was desolate at home, frightened by the hurtful stranger I was married to.  I was confused because I was so nice to him, yet it made no difference.  Sometimes he would be warm and loving, sometimes cruel and cutting.  I never knew which I was going to get, so I was constantly on guard.  I was only 22 years old, naïve and with no alternative but to stay with him. My mother had provided this helpful wedding day advice: you’ve made your bed, you have to lie in it.  She made it clear there was no recourse there.  I was emotionally exhausted and we had only been married a few weeks.   Because hope springs eternal, and because I did not have resources or the courage to do anything else, this would be the pattern for the next seventeen years, ending only with his fatal heart attack at the age of 40.

So the little apartment I had been so excited about became a symbol to me of the beginning of a long, hard road.  What I had entered into with such optimism came to be a place that echoed with anger and disappointment.  We lived there for a year before moving to Brooklyn to be near his family.

Incredibly, when I Googled the address the other night, a realtor posting popped up.  It was for the exact same apartment we had lived in.  At first I thought I was being silly, that would be too much of a coincidence.  I looked at the pictures, nothing like the shabby little dump we had had.  We had no shiny new floors, recessed lighting or exposed brick.  But the more I looked, the more I could see the footprint of what had been.  The transformation was jaw dropping.  Our rent had been $165 a month.  The current rent was now $2,350.  For a fifth floor walk up with no proper bathroom and no closets at all.     

Here is the layout of the apartment as we had known it:

The front of the building, pretty much the same:

And here are pictures of its present day transformation with notes on the original configuration:

So the memories have been flooding me over the past week, how sad it was that two young people, two good people, should have lived in so much unhappiness.  But of course nothing is black and white and there were some good moments, and laughter.  Dennis bought our Christmas tree at the florist around the corner, Exotic Flowers.  But he didn’t cross the “x” on the check, so it looked like he had purchased something at Erotic Flowers.  We laughed about that for a long time, our erotic Christmas tree.  Our puppy Ellie was a constant source of fun.  Sometimes Dennis would surprise me by meeting me at the door as I came out of work and we would walk home together through the Manhattan twilight.  Most of all though, we were overjoyed about our coming baby.  We were both thrilled about becoming parents and loved our precious child from the moment we knew. 

And there was this.  Right before we moved in, Dennis was painting the apartment.  One evening before he quit for the day, he playfully painted something on one of the unfinished walls.  If an archeologist scraped though the dozens of layers of paint that have probably been applied since 1976, they would find in big letters “I LOVE MARIE LYNN”.  Me.  And I hang onto that, the most important thing to remember.  Despite the things he did and said, I think that deep down he really did.  As I loved him.  If only we had known how to prove it to each other.

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The Bill of Nine Rights and a Wrong

This is my take on the Bill of Rights, the first ten amendments to the United States Constitution.

The second amendment is essential because:

• Those pesky British are always trying to take us over.

• I might want to start a Citizen’s Militia someday.

• Automatic assault weapons are fun!

• We need to protect ourselves from the indigenous people whose land we stole.

• It is far easier to shoot an intruder than to call 911.

• Nothing has changed in our country since the Constitution was written over two centuries ago.

• I’m an American and my rights are more important than yours. I deserve whatever I want, whenever I want it.

• Most important of all, with 35,000 gun deaths annually in the United States (murders, suicides and accidents), it keeps funeral parlors in business.

You go, Second Amendment!  You are what makes America what it is today – a worldwide disgrace.  It is a place where you send your six year-old to school and they never come home again.  A place where you ask if your child, shot up to ELEVEN TIMES with an automatic weapon, suffered much before they died.  A place where dozens of children will have fond childhood memories of hiding in school from a murderous, rampaging gunman.

God bless America.

Olivia, days before someone looked at that face and murdered her with an automatic assault weapon, obtained legally under the second amendment.  

 

 

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Dispatch from Room 557

Rehab is a world unto itself.

I think it is the lack of privacy that is getting to me more than anything.  There is not one aspect of your existence that is not scrutinized and made fodder for casual discussion amongst the staff.  What is sacrosanct for you is routine for them.  And that is, after all, their job.  But because there is no Cone of Silence, you hear more about yourself and your co-inhabitants than you ever would have wanted to know in a million years.  I am horrified to hear my elderly roommate reporting intimate details about my body functions to her friends and relatives.  I can’t imagine they are all that thrilled either.  At least those who are under 80 and not demented.

All rooms are doubles and, from the sound of it, no match is an ideal one.  Everyone has an issue and I am no exception.  Sharing a room with a seriously ill 85 year old with mild dementia is in turns humbling and exasperating.  She is truly suffering, and whimpers a good part of the day.  It makes my heart break but it is also extremely upsetting to listen to.  She is up multiple times during the night and, as a result, so am I.  The television blasts even though she is not watching it and I have to ask for it be turned off from in front of her sleeping form.  She is experiencing significant, audible gastric distress and I, apparently, am particularly susceptible to the sounds, as queasiness is becoming a permanent condition for me.  If I have to use the bathroom, it never fails that the aide has gotten her there first, which will mean a wait of at least 45 minutes while she is taken care of and washed up.  She needs help with her tray that I am too weak to give her, which means I have to sit and listen to her struggle until the staff comes in to help her.  And then there was the panic when she was apparently dreaming and called the nurse to report there was something seriously wrong with her roommate (me).  I was sitting on the edge of the bed reading as I heard this transpire out of the corner of my consciousness and an entire team had rushed in to resuscitate me before I could say a word.  They looked at me and I looked at them while she insisted there was something substantially wrong with me.  Which there clearly wasn’t.  If nothing else, it got everyone’s heart rate up a bit.

But then in the night I hear her murmuring, offering thanks and praise to Jesus in gentle little whispers.  I am chastened by her simple expressions of faith in the face of such adversity and pain.  With gratitude, I silently join in.

Physical and occupational therapy is hard work but, I am pleased and surprised to find, effective.  I can feel some strength creeping back, although stamina is slower in returning.  The staff is no-nonsense but incredibly kind at the same time.  My fellow patients are a fascinating cross-section, but each individual is a study in courage and accomplishment.  Some have had strokes, some are simply weak from advanced age, some are recuperating from surgery.  It is awe-inspiring to see how hard they are working and how determined they are.  There are some exceptions, those who are frightened and confused, those who are resistant and at least one dirty old man, but most are valiantly giving it everything they have. 

There is another woman here with MS.  The first day of my admission I was cheerfully told by a few people that we would be introduced, that I would like her, that she was very nice.  Which I had no doubt of.  But it never fails to surprise me that people consider having MS to be some sort of choice or hobby that connects people who have it.  I have no more in common with someone with MS than with an average person.  If they had said they would introduce us because she was a writer too or was a movie buff or lived in Ocean Township, that would make sense, but not based on the disease we both have.  And when I see her in therapy my heart sinks.  She is very, very ill and extremely impaired cognitively and physically.  What were they thinking?

The second day I am here (hmmm, or maybe the first?; it is so easy to lose track), I am interviewed by the team neuro-psychologist.  The mini-mental exam is interesting, but not interesting enough for me to rise to the challenge.  I just cannot wrap my brain around eight (or maybe nine?) unrelated words she asks me to remember and repeat.  I ought to be embarrassed, but I just don’t care.   Considering how competitive I usually am intellectually I am astonished at myself, but it is no incentive.  I have no interest in those eight words and they just won’t stick.  We return to them maybe six or seven times before giving up.  I never do remember them all.  It is a pretty humbling experience.  But not one I am particularly upset about.  This is not a good sign.

My independence has slipped away over the past year as the lymphedema in my legs limited my mobility and my function.  I did not put up much of a fight, as I am just so weary.  It seemed as though I had hit that wall of accomplishment and was just through with everything.  Hard earned career was over and done with.  Weight gain had rendered me hideously unattractive and uncomfortable.  I no longer bothered with getting my hair and nails done.   I don’t wear jewelry anymore or wear nice clothes.  What’s the point?  Not yet 60, I could see no future.  But the therapy here has had such an impact in so short a time that I wonder, maybe I will drive again?  Maybe I will be able to get myself somewhere to meet a friend for lunch or go visit my dad?   One of the nurses (Becky, I just love her!) is chatting as she wraps my legs and says offhandedly “Miracles happen all the time, you never know.” 

Now those are eight words worth remembering.

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Desperately Seeking Breathing

Last week, while we were all already dealing with a terrifying hurricane and no power for days, I began experiencing dramatic shortness of breath after only taking a few steps.  I struggled and struggled, trying to convince myself it was just something I was imagining, even though I was taking deep, prolonged gasps for air with the least bit of exertion.   I was attempting to persuade myself that I was simply deconditioned and if I pushed myself just a little bit harder I would end up with Olympic level lungs.   Finally on Sunday, Mary Kate announced she couldn’t watch anymore and she called 911. 

I actually conceded to ride in an ambulance, because I knew I wouldn’t have made even the few yards to the car.   And I agreed to go because all through that whole brutal week, one particular exchange had loomed in my memory.

Two weeks before Christmas in 1993, my husband Dennis offhandedly mentioned his past bout of pleurisy was bothering him.  What do you say to someone who you have been married to for 17 years and who is notorious for not taking care of himself?  “What are you telling me for?  Call the doctor.”  And he replied, “I will, right after the holidays.”  Well, he never made it to the holidays.  He died of a massive heart attack on December 20.  He had no idea he was mortally ill.  He never would have left his kids behind if he had had any choice in the matter.  These are the things that went through the head of this particular notorious patient, over and over again, as I struggled to breathe.

So off I went, sirens and all.  I was too scared to be mortified.  Well, I was too scared to be really mortified.  I truly was more relieved than anything.

I suppose because I grew up with a world class hypochondriac who I never believed a word from, I always assume that I will not be taken seriously.  And, as a matter of fact, I often am not.  Part of it is, yes, due to managed care and the time constraints that limit practitioner revenue.  But I think it is far more because healthcare providers are jaded, bored and do not listen.  (My PCP is an incredible exception, but more about him another time).

I lay on the gurney in the ER, wearily waiting for the first in a series of MD’s who would ask me the same questions, few of which would be apropos and who would not listen to the answers anyway.  Then curtain discreetly opened enough for a young voice to ask “Mrs. Cooper?” And he leaned his face in just a crack, with a raised eyebrow.  He was the most adorable thing I had seen in a long time and I nearly told him that.  Way to start an assessment by being defined as a dirty old lady.

He was cute, as I said, but mostly he just exuded niceness.  He was polite and sensitive but not smarmy.  He listened to my responses and then repeated them back to me in different words!!  Agghhh!! He got it!  When he came back with my lab results, which indicated I was in dire need of a blood transfusion, he looked so concerned I thought he was going to cry.

I was going to be admitted, so I was taken to a new unit the hospital had just opened to facilitate patient back-up.  Because oversight of this department was my job at another hospital, I knew what they were trying to do, but they were failing miserably.  Beds in our local hospitals are like gold.  When you have a high population of elderly and poor, as you do at the Jersey Shore, ER’s get backed up very, very quickly.  A hospital only has so many beds.  Most of them are dedicated, such as orthopedic, surgical, or mother/baby.  You can only place that kind of patient in that bed.  If your patient has a co-morbidity, such as a communicable disease or infection, they have to be isolated or put in a room with a patient who has the exact same diagnosis AND is the same gender.  So your bed possibility is reduced even further.  It is a constant juggling game.  Sometimes, the Gods smile and you can fit everyone together like a Chinese puzzle.  Other times, it is a nightmare of vast proportions with 20 seriously ill 80-plus year-olds languishing in the halls of the ER.  Within hours you have family members in your office, who you completely sympathize with, screaming at you to get their grandmother out of the ER corridor where she has been for 20 or more hours.  But you literally have nowhere to put them.

So up pops the Transition Unit idea (that is what we called it at my facility, it has other names, such as the Discharge Unit, which confuses the hell out of everyone because the patient is only being discharged from the ER to the hospital).  Anyway, the thought process is to get the patient completely assessed and prepped and tied up with a little bow so they simply have to be moved into the proper bed when it becomes available. The patient gets to wait in a comfortable bed in a nice little curtained cubicle.  Sounds like a great idea, doesn’t it?

Only it doesn’t work, except as a sort of a highway rest stop, without the tasteful souvenirs .  The patient continues to suffer in limbo.   Patients are not discharged from the main hospital any faster, and that is where the backlog starts.  So patients aren’t stuck in the hallways anymore, but they do get stuck in these way stations.  They are uncomfortable and there is no privacy.  When you are already sick, you feel simply miserable.  Patience frays, family members lose their tempers.  Frequently with each other.

I ended up in the Discharge Unit for about 24 hours.  Every conversation with every specialist who came to talk to me was overheard by the entire place.  The space assigned to each patient, divided by curtains, is approximately 8’ by 10’.  And I am being generous.  The guy in the cubicle next to me snored all night long, interspersed with shouting out obscenities.  Charming.   The little old lady in the cubicle on the other side of me was enduring the pain and confusion of dementia and she whimpered the whole time.  And periodically snorted violently.   I spent the night in contemplation and prayer.  I contemplated holding pillows over their faces and prayed for forgiveness for wanting to kill them.

Two members from entirely different families came to actual physical blows as long simmering issues exploded over their sick, elderly relatives.  Mom always did like you best.

So by the time I was sprung, everyone else had already been moved along with the indelible memory of when my last menstrual period was, if I was having difficulty urinating and if I was sexually active, among other delightful tidbits.  For, additionally, the subtext in every single solitary consult was Fat.  Did you know you were Fat?  How long have you been Fat?  Did you know being Fat can make you sick?  What are you doing to stop being Fat?  Fat, fat, fatty fat fatty.  Fat.  I am ready to stick my head in the oven, but I know if I ask where the kitchen is they will think it is because I am Fat.  I turn on the television power for the Internet and notice for the first time the screen is personalized.  Name: Marie Cooper, Room Number: 6007, Overweight.  WHAAAT?!?!  It’s even on the effing TV?!?!  Then I see this is the weather: OverCAST.  Oh. 

For a horrible minute, I thought even the Internet was on my Fat Case.

 

 

On the plus side, my room is spacious and bright.  I am getting great care from kind people (for the most part).  Mary Kate brings me flowers, and better still, brings me Madailein, who charms everyone by saying “Hi Da Da!” when my male tech walks in the door.  He did turn a trifle pale.  My dear friend Kathy from high school comes by.  Deacon Gail brings me Communion.  Christine comes by but I am at a test.  She comes the next day in a blizzard!!  I am surrounded by love, including virtually on Facebook with dozens of kind and encouraging thoughts.

I go for test after test, but I am still so short of breath it is almost incapacitating.  While talking to the pulmonologist, I realized that the litany of symptoms is a mirror of the transverse myelitis I had eight years ago. I suggest that to her and she happily agrees it is a possibility.  I started the IV steroids yesterday, too soon for any improvement, but fingers crossed.  On the other hand, I am feeling overwhelmed that the MS is causing such significant and crippling symptoms.  The prognosis will not be a good one.  People who have lung involvement end up on respirators.  I am so scared.

One of the people I encounter here is a jolly woman who brings me my dinner tray.  I am very down about the whole Fat thing and I say so.  She puts her hands on her hips indignantly.  “Honey, you are a lovely looking woman!  Beauty comes from the inside.  No one has a right to make you feel bad about yourself and you need to tell them that.  You need to say ‘That makes me feel bad. Don’t talk to me like that!”  I don’t care who it is!”  She shares some of the incredibly overwhelming circumstances she has struggled with and I am so touched by the generosity of her spirit.  I feel better simply from being exposed to her spontaneous kindheartedness.  It is such a gift to have someone like this placed in your path when you most need it.

And then there was the blizzard!!  A week after the Jersey Shore was devastated by Hurricane Sandy, we are hit with a pre-season blizzard.  People who have just gotten their power back after six days lose it again.  No one is prepared for eight inches of snow.

The view from my hospital room on Wednesday.  I know it says Thursday, but I am not operating on all four burners right now.   So that is a big FAT mistake, ok?!?

And the view this morning approximately 5:30:

Looks like that pesky demon may still be there.

Continuing to pray for strength and grace and praying the same for all of you, my wonderful virtual true friends.

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