Two Little Girls in Green Dresses and…

This is about two little girls in green dresses, families, a school dance and how it changed lives, and its reverberations.

Amazingly, at least to me, this story starts 50 years ago.

I grew up in Levittown in the era of large families.  It was a time of stricter Catholicism and an innocent optimism. Birth control was restricted and popping a pill was not yet a common thing. There were these huge, iconic families with children in every grade. People said that Levittown looked alike.  It wasn’t the houses.  It was the children, families of  little rubber stamps.  About 10 years ago, I went to a party of Levittown people.  One of the men asked, “Do you know who I am?”  An interesting question that I have heard throughout the years. There were at least 3 – 4 of them, one older than me, one my age, one my brother’s “You are one of the P brothers.”  We all laughed and he told me which one he was.  He was my age.

Another family was the Gs.  I don’t know how many there were but there was my age and brackets. B had a crush on  me when he was in kindergarten and I must have been in third grade.  Upon seeing me at a reunion decades later, he asked, “Don’t you feel anything between us?” “Yes, I do.  Your wife.”  His brother T was/is my age.  The family was large, popular and unbridled.  I remember Mrs. G writing a letter to the local paper about her children being able to look into what passed for a strip club at the time, at 9:30 at night!  My thought was why were they out then when that was my bedtime.  T was popular and arrogant with that teenage boy swagger.

He was part of a crowd of those boys.  Every school has them, in every year.  They band together in their adorable cuteness.  Girls love them, for the most part unrequitedly.  Teachers pander to them in order for their classes to be unencumbered with chaos and testosterone. They rule the halls, the classrooms and the schoolyards for that brief, shining moment in their lives.  It’s been my experience, for the most part, that those charmed boys and girls, once school is behind us, morph into fatness, polyester and, for the guys, baldness. I had liked T in 2nd and 3rd grade but outgrew it.  By the time junior high school rolled around, I steered clear of him and those boys. They weren’t part of my world and I didn’t want them to be.

I met Sue(no initials here, we share the same name) in the fall of 9th grade. She had transferred from Catholic school.  We were introduced because we had the same name. 9th grade is a cusp between the child and the young adult.  We shared a name so we must have similarities. Well, we did both have brown hair, wore glasses and were “nice” girls.

There was a holiday dance that year.  These were simple affairs. It was in the cafeteria.  There may have been crepe paper.  The lighting was dimmed.  There were records with pop tunes.  I had attended the end of school dance the previous spring, worn white lipstick for the first time and had had fun with my friends.  We were nerds although the term was not in use then.  I believe we were known as  weirdos.  We were the advanced class and in many cases had known each other all our lives.  When you grow up as closely as that, you have a defined role and place.  However, there was still the remote possibility that things might change. A dance held magic, unnamed possibilities for a girl like me.  Glamour was an undercurrent. It was still the era where girls could not wear pants, let alone jeans to school.  Mini skirts had arrived but were not yet micro. 

The afternoon of the dance, E asked me if I wanted to go?  Sure. I didn’t take it as a date.  My first real date happened on the last day of 11th grade. I had known E since we were both  7.  He was funny and nice.  He liked comic books.  He was thin but was gaining a bit of weight  He was blond.  I don’t particularly care for blond guys.  Apparently, E saw it as a date, as I found out later.  We were driven separately.  In those days, once you arrived at the dance, you stayed.  Your coats were taken and left in the gym.  It was only E and I from our regular set that night.  As soon as the coats were locked and we entered the cafeteria, E had a severe asthma attack and had to go home. This apparently was brought on by the pressure of the “date”.  Instead of telling a teacher, we had come together which would have allowed me to call my parents and leave; I was adolescent, awkward. embarrassed and found myself to a folding metal chair at the edge of the dance floor.

I had been excited about going to this dance. It was an occasion.  Since, it was late notice, my mother let me wear her green sheath. Since it was hers,  I felt it was the height of sophistication.  She gave me a long chain necklace with green stones.  I had graduated from white lipstick to pearlized pink.  I have always had my own specific sense of style. In my mind’s eye, I was adult and glamorous. Teenagers at that time in Levittown went to Mays Department Stores for their clothes.  Everyone wore the same thing.  This was not me.  It accentuated my differences. The houses may not have been the same but at times, it appeared the people were uniform.  So, there I was in my version of sophistication, sitting on the edge of the dance floor, counting the hours and minutes until I could escape.  Counting the minutes is something that I later learned from Sue to do correctly.  A group of about three of those boys approached.  The only one I remember after all these years was the ringleader, T.  Those boys mocked me, asked me to dance, grabbed at me, made apelike motions.  It was awful.  I sat there, mortified. The chaperones didn’t materialize.  A was a stocky boy.  Boys are not fat.  A was middle of the road.  He was smart. A was also brave.  He stepped up to those boys.  “Leave her alone.  Just leave her alone.” They were stunned. And then, Sue swept in.  “You are in a green dress, so am I.  C’mon and dance with us.”  Sue was in a moss green chiffon dress that had been cut down, if I remember, from a wedding. An age of glamor, mystery and possibility. Two little girls in green dresses;  she led me by the hand to a circle of girls dancing .  The evening eventually ended.  I went home, cried hysterically and threw up.  My parents declared I was never to go to another dance again.  I never did until I reached college.

the green dress

It was the start of a decades long friendship for Sue and I.  She has taught me so much about how to live my life.  I carry those lessons with me. Counting the time lets me cope with infusions and MRIs.  Okay, I also sleep through MRIs. She taught me about connecting to life and to others.  Reaching out and being brave can change a life.

We ran into A at a reunion some years back and thanked him for that evening.  He remembered! He also remembered that he was slightly scared because he, too had to go against those boys.  It was the right thing to do. He is still a lovely man.

T is in my life.  We saw each other at our 10th reunion.  We spoke.  I met his wife.  He was adult as was I. Years later and I don’t remember how, he asked me to read a play he was writing and subsequently had produced.  He knew that I read tons and attended lots of theater.  We became distant friends on Facebook.

All three of us have faced  significant health issues and situations.  It has been a true and deep comfort to share with people who knew you when and before. We weren’t always broken.  When we talk, I picture us as we used to be. We are young and healthy.

T is now my health insurance broker yet we speak of many things.  “Of shoes — and ships — and sealingwax —. Of cabbages — and kings —. And why the sea is boiling hot —. And whether pigs have wings.”  We have a common past.  It’s not only a shared geographic past but of a certain time and place, a shared youth.  We have never spoken of that dance.  I don’t even believe he remembers it.  We talk of people.  And if you are reading this T, this is what I want to say, not what I should say. We have had conversations around that topic. I love that my life moved on and can still include that boy.

I recently came across that green dress.  Yes, I still have it although I had forgotten.  It looks so tiny.  It’s hard to imagine my mother wearing it; let alone me.  I kept it for all it represented to me – sophistication, pain, strength, deep and abiding friendship.  Two little girls in green dresses at a dance  and a lifetime.

In Which a Gypsy Contemplates Another Move

I lived with a man once who derogatorily declared that I was a gypsy and could move my life in a cargo van.  True.  But was that a bad thing?

I have moved very few times over my life and each time, the move has evolved and reflected where I am in life, not just physically. As I prepare to move again, I look back.  My days of gypsy moves are gone.  My youth has passed.  My mobility has become impaired.

I really didn’t move initially  in a real sense but lived away in college.  My second through fourth years were lived in Rogers House, a brick 4 story house across from the university.  It was a walkup. My first year there was on the 2nd floor.  It was emergency housing for me and I believe my friends helped me move in possessions and clothes. It was already furnished.  Every year, I had to leave and come back.  This involved travelling back and forth with my father only.  There was never enough room for my mother.  The third and fourth years, I lived on the fourth floor.  My father must have helped me.  I ran up and down those stairs several times a day.  It was a very modern apartment for the times. It had a trash compactor.  Well, as fit as we all were,  45 pounds of compacted trash were slightly beyond us.  We became known as “the girls with the garbage” because any time someone walked us home and walked up those four flights with expectations, they literally left with garbage.  I had to sit with hats on my lap in my father’s car when I left because there was no space. I can’t believe how easily I ran up and down those stairs and with stuff.  Who knew 40 years later that I would not be able to manage unaided the two steps up to my home.

I came home to my parents  and stayed put for years.  My postal worker and I started to look for a place to live together.  We couldn’t come to an agreement so I found my own place.  It was the 2nd floor of a house.  I absconded with my bed, my parents’ black and white TV, my bedroom set which had been theirs originally and my childhood desk.  My brother must have done that move.  My boyfriend certainly did not.  I bought a room divider at Ikea and lifted it in pieces up the stairs.  I acquired a color TV and VCR one Black Friday  which I also lifted up myself.

I became engaged, not to the postal worker.  We rented a cottage in another town.  My fiance rented a cargo van.  His brother and my best friend came along to help.  We should have known there was trouble ahead when a piece of furniture couldn’t get out the door. D’uh, take the door off the hinges.  Girls knew about that?  Yes, “girls” in their thirties knew that.  Girls had their own tools provided by their fathers and girls knew how to remove hinges.  A van and two packed Escort hatchbacks did the job.

Of course, the marriage was doomed. My brother knew this the night of the wedding when he came back to the cottage and I announced, “This is John’s room and over here is my room.”  I became almost clinically depressed.  My father said he would not help me with the move.  I had to hire a mover even though I was broke.  I packed 17 boxes and piled then in the living room before my then husband realized I was serious.  The mover expressed condolences to me on dealing with my parents and said “I give you three months.”  It was more like three years.  My father had cleared the garage for me and then decided he needed it back.  Rent storage space; load up the Escort and stack boxes.

Next move.  I met a man my parents detested; he of the gypsy comment.  He rented the cargo van and I loaded the Escort up yet again. It was 1 floor.  It did not work out.  I quietly found an apartment on the top floor of a house and just as quietly began to move things out.  I did have a problem.  I needed someone to drive the van.  My friend had a business with workers who liked me.  They would help.  However, her husband said he liked the man and could not take sides.  I took the man out to dinner and he knew immediately I was leaving him.  He drove the van cementing forever his version of the gypsy life with the cargo van.  My friend’s workers met us and it was the easiest move I ever had.  

Next move was from that apartment into a home of my own with my new husband. His 18 year old son and friend helped.  Just worked part time for “Joe the Mover.” He borrowed a box van.  We couldn’t rent something to let him drive.  He was too young.  The box van didn’t do it.  I had every Bon Appetit from 1984 -2006.  I had to resort to “rent a wreck” and a cargo van.  And I drove it and it was easy.  There was a basement with “mad crazy stairs” and an upstairs.  I didn’t even take a day off from work.  It appeared my gypsy days at ended.  I had a husband, furniture and a mortgage.

As my condition progressed and the neighborhood deteriorated, it became apparent it was time to move on.  There were no more cargo vans in my future.  The projected move was out of state and to the South no less. Let’s be real, a move to another country, just one without a passport.  A real mover.  As much as I advocate change, I still consider move and pack ugly four letter words. Moving requires an evaluation of where you have been, where you are and where you think you are going.  The destination is never clear or defined until you actually alight.  It’s painful, at least to me. Think about the optimism when one starts.  There is a reason the move is taking place.  It is a leap into an unknown.  There are simple things such as “Will the sun still make my walls glow?”  What is the library really like?  What sounds do you hear in the still, quiet of an evening? Then the most important questions – “What do I take and what do I leave behind?

A good friend and I have had this discussion in terms of the migrant experience.  What do you take in your grip? And what’s left behind?  As I contemplated this move, I had to reflect yet again on my grandmother and what she brought with her; how she brought  it and what she left behind.  Grandma brought crystal, champagne glasses with stems so thin, they break if you breathe.  Only one is left.  Other crystal that was her mother’s.  Silver service for at least 36 people.  It was for a way of life that no longer existed.  Tea cups. undefined Vases.  Trinkets.  A crystal heart with a silver cover holding a lock of her dead sister’s hair. The silver sandwich tray that the servants would put sandwiches out for Sunday supper.  The paper cross that held the rose rosary beads given to her by my grandfather. undefined Pictures of relatives; some lost to the mists of memories.  What was left behind?  Fiestaware dishes.  A way of life.  Friends.  Family.  Home.undefined

So, I was faced to evaluate what was worth sixty cents a pound to me. Definitely most of my books.  My great-grandfather said that books are your best friends. They represent the times in my life. There are the childhood books: Heidi, The Secret Garden, A Little Princess, Little Women, the Bobbsey Twins. College: Victorian poets, Fanon, Marx, TS Eliot. Life: Cookbooks, Dickens, Rhys. I would be leaving my life behind. My umpteen sets of dishes for every occasion.  This is  a fetish inherited from my grandmother and filtered through me.  A dining room set that I had to acquire when I bought a home.  All of a sudden, I am no longer a cargo van gypsy but a woman of substance; of nearly 12,000 pounds of “stuff” and a tractor trailer.

And I could no longer lift things or pack  due to my condition.  No more footloose and fancy-free days for me. It’s sobering.  Is this “weight” I wanted?  What do I leave behind?  It’s a new era so my friends and family are only a telephone call or video chat away.  I definitely lose a sense of place and time.  I knew the rhythms and scent of my life; the hot tar city smell, the salted beach sand, the magnolias, the mums, the roads.  And am I ever going to be that life packed into a cargo van gypsy again?  She has been left behind and I miss her terribly.

The Story of a Dress

An old friend , recently, sent  a picture of me at a luncheon in the early 90’s.  I have a big hat, a light tan and a huge grin.  I am wearing a brocade dress of my mother’s made by my grandmother.  This is a mythic dress in my family.

My grandmother sewed to support her children.  Grandma could make anything.  Well, let me amend that statement.  She could and would make anything if she liked the fabric and

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Valentine Venting and….

I have never been particularly fond of Valentine’s Day. My parents were completely unsentimental. I can remember being shocked when I was about 4 or 5 that Daddy came home with candy for Mommy and me. My mother didn’t particularly like chocolate or sweets. I was not allowed. Our chocolate and candy consumption was strictly monitored. I was an odd child without tons of friends so the card exchange was always scary for me.

I remember in college not even checking my mail freshman year and by then I was cute and popular. The next day I found someone had left me a rose.

In our 16 years together my husband has given me two stuffed animals. I hate stuffed animals. My late ex-husband gave me Russell Stover chocolates the year we were married which I believe he ate. Joe, the man I lived with after that did give me chocs but also called me Gordita. So, so much for that.

Kevin, who has been the love of my life, didn’t really do it. Though I do remember one year buying a red flapperesque dress and going out for Japanese food.  It was a charming, small restaurant.  I felt pretty and sophisticated.

Valentine’s this year was horrid. My first thought on waking was the Parkland shooting anniversary.  My relationship with the holiday as always been ambivalent.  These children do not have that luxury.  It will be a day of sadness and death.  Did anyone in your high school class die?  You are supposed to be invincible at that age.  Worse, did they die of something other than illness?  Someone in my class did and we still talk and muse about it decades later.  I cannot begin to imagine the pain these kids are in and will be in, along with others their age that the day was completely altered forever.

There’s still the personal. I have been unexpectedly blue all week.. As part of selling the house, I have been decluttering so this wee kI went through tons of paper. I found that I was diagnosed with this condition 10 years ago. I should be grateful but I am not feeling it. It was February and I was about to teach a class.  As I recall, I was getting ready (I was a technical trainer) and was fiddling with AV equipment and plugs and was underneath desks.  The doctor rang, said you have PPMS.  I went back to my plugs and taught my class.  I thought it was the good kind.  Ok, so if I look at my “progression”, I am in good shape.  Me, being me, I am not.  I was so confident and oblivious.  I hate how my world has become confined.  I swore that would never happen and it did.  I am battling back.

The realtor had a realtors’ open house on Valentine’s. Everyone who came said the house was worth much, much less. This is devastating and hard to believe. I was able to go upstairs for the first time in months and understand. It’s a wreck but one that can be fixed. Of course, struggling upstairs didn’t help. It took forever and tons out of me.  It was scary.  However, it was better than last time when I had to go down on my butt and then struggle and crawl to stand.

Now, as to Kevin, he is in a nursing home in another state and has paranoia and Parkinson’s.Postal Old Girlfriends, Postal and RituxanI am trying to ring him every Thursday. “Happy Valentine’s Day, Kev.” “You are two days late.” “No, today is February 14.” From there the conversation totally devolved. I can’t even repeat it as it made no sense whatsoever. For example, he said something about my car and I told him I drive a Buick now. He told me he was surprised I bought a Swiss car.We always helped each other with cars.  There is so much we have shared over the years.  When Buster the Biker unceremoniously dumped me, he arrived with a stack of blues cds.  I held him when he cried several months later when the woman he had been seeing for years, went back to her husband.   I always tell him I love him when I call. We have known each other since 1984 and supported each other through good times and bad. It has been like a marriage.  We have been a constant in each other’s lives.  Valentine’s, he did not understand what I said. It was the start of spring training and even that produced nonsense.  He used to walk 8 miles a day for his job and when it was light, catch a round of golf.  After we definitively broke up, if one of us wanted to see the other, we’d head to the beach.  Either one of us was likely to be there.  The beach has a four mile walk. It didn’t matter who was where, the other one was, we’d turn around and walk the rest of the way, anywhere from 2 -8 miles.  Now, we both can barely walk.  Ironic, isn’t it?  My heart is broken.

I have a friend who is 95. I was speaking to her this week and long before it became popular, she told me I was unusual as I was so resilient. I didn’t understand.  I thought everyone just tried to stand up again until they could.  Many years ago, I worked for a man who used to say about me, “The child does not understand the concept of NO.”  And indeed, I have not.  I integrated a primarily all male university.  I have worked in all male companies/industries.  I have changed industries.  I have been David and gone up against a corporate Goliath.  I though I ignored my diagnosis and kept fighting.  She told me again this week about my gift.  It sounds good on paper and when I look back.  It’s never felt like resiliency or grit.  It has felt that I have lived my life as a Joe Palooka punching bag; one of those toys with the weighted bottoms that when it is hit, it pops right back up again and again.

ocean waves.jpgKevin and I loved the beach, all year round.  I have likened life to the beach and the ocean.  After Hurricane Gloria, we rode down to the beach.  We laughed at ourselves as we did so.  We wanted to make sure it was still there.  There were huge waves crashing against a diminished shore. The sea was calm within a few days. The sea is like that, sometimes calm and clear, other times waves knock you off your feet.  The waves can erode your shore or build it up. I guess I just have to wait for that wave to catch me again and build me up.

Propriety, Blueprints, Surgery

In the past, in certain circles, a woman’s name was only supposed to be mentioned in the newspapers three times: birth, marriage, death.

I feel much the same about hospitals and the maximum  should be three: birth, childbirth, death.  This list is flexible downwards.  There is no need to have any of these three events in hospital.  As to myself, my birth sufficed.  It was noteworthy at the time as I was the largest baby delivered at that hospital up to that point – a whopping 9 lbs., 8 oz.  Very healthy indeed.  In fact, record breaking for that hospital at the time!  Since  I did not have children, no hospital for me.

However, things appear to be changing.  Dr. F, my neurologist, told me when I first started this journey almost 10 years ago, that there appeared to be some issues with my spine.  If it wasn’t going to definitively help my walking, then why bother.  Well, Things Fall Apart.  I have been back for my second surgical consult.  This practice lets you know in no uncertain terms if you are 15 minutes late, your appointment is forfeited.   Despite having left early, I hit construction and traffic. Having made up my mind, I want this done as soon as possible.  I gimped in five minutes before my appointment and then waited for over 2 hours! Not fun and definitely stress making.  Surprisingly, my blood pressure was 90/50; repeat 90/50.  I am normally low but never this low.  And surprisingly, they were good with that.  The first time I had Rituxin,  they were freaking at 100.

The surgeon enters along with the resident, who  is under the impression we have met before – so not a good sign.  If I was still in my youth, this would not  have been disturbing as I was highly visible and was all around.  Now, in my little old lady mode, NOT. The surgeon pops my latest MRIs and scans into the computer.  I do not like seeing these.  One, they are ugly and I do not do ugly. Two, I really do not understand what I am seeing.  So, why look? Now, Tom is a different story entirely.  The surgeon pops up my lumbar spine MRI and announces that it’s arthritic but I am old and that’s normal.  Who’s old?  Yes, there’s edema .  So, yes I have fractured my tailbone.  Too bad. There’s nothing to be done and it won’t impact the surgery.  Now, he brings up my neck.  I feel like a skeleton.  It looks like one for sure.  I have become my own Dia de las Muertes.  Tom is fascinated.  He tells the surgeon it’s just like reading a blueprint.  Dr. B agrees and they are off on a tangent on elevator construction (Tom’s old career) and blueprints.  Well, the fracture they thought they saw in my neck is not new and apparently healed. These latest tests indicate that surgery will be through the front of my neck aka my throat.  I am not reassured that this is positive although he assures me it is better.  It doesn’t sound that way to me but who am I?  The patient? What are the downsides?  Well, since they are going in through my throat, nicking my caratoid?  As an old boss used to say, “oh joy, oh rapture unforeseen.”  Not likely.  My voice could go down an octave.  It can be low to begin with.  I used to work on a phone line and people used to call back and demand to talk to Steven, me.  It’s not the worst outcome.  I may not be able to swallow, briefly.  I did want to drop a few pounds before the New Year so in a twisted way that works.  And of course, smoothies always work for me.  In terms of positive things, I won’t be one of those old ladies who can’t raise her chin from her chest.  Also, he is confident that my balance will improve.  Also, from what he describes about this impingement, I am cautiously optimistic that I will improve.

Also, on the positive side is that this is normally an outpatient procedure.  However, since I am “special” ( I tell him, “No.  I am unique.” which discombobulates him)  I will have to stay overnight.  Tom’s scheme is to not leave the hospital while I am there.  He will hide and/or stay in the cafeteria.  I anticipate strong painkillers, so whatever.  It is sweet though

Next rant.  My neurologist, Dr. F needs to sign off on it.  Since she is female I continually refer to her with feminine pronouns which he ignores and continually references he and him.  He needs to get “him” on the phone as “she” needs to sign off on this surgery.  Considering she has advocated for this for 10 years, I do not envision problems.  I feel comfortable with his arrogance, a necessary trait in a surgeon.

I am scheduled for December 11 which is just about perfect.  I was able to conduct my last Elves Workshop, traditionally held Thanksgiving Friday; Hanukah, Christmas tree purchase (the joys of being interfaith), my tea vendor show and our annual holiday centerpiece class.  I know I am lucky that this is only my second stay in hospital.  And on the upside, maybe I’ll buy blouses instead of pullovers?

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Falling, Falling, Falling

I have always, always fallen.  As I have previously recounted, I spent my senior year of university on the ground.  I fall when I am upset.  I had a therapist who figured out that I let my feet out from under me, literally.  I fall well because I have had so much practice.  I have also been very, very lucky.  Then we add MC, as I prefer to call it to the mix.  More falling.  Usually, for the MC falls, I know they are going to happen. I start to get an odd sensation.  Or, of course, I trip over something and can’t catch myself.

I fell three weeks ago for no particular reason.  I was on my way to my therapist and ended up on the front room carpet.  Tom couldn’t get me off the ground for almost 20 minutes.  Crawling, chairs and screaming were involved.  I bruised and hurt my hip and had huge bruise on my arm.  On the upside, and if you know me, there is always an upside, I was bruised but not broken.  This means a bit of alright on the osteoporosis.

I vended tea at a psychic fair October 28.  It was a pleasant day and whilst I was in worst condition than I was last year, I was better than I have been.  We splurged and had a lovely sushi dinner and watched a movie.  I was getting ready for bed and Tom was already in. I don’t know about you but my bathroom terrifies me.  Ours is tiny.  The handicapped stall where I used to work is larger than ours.  I have a grab bar by the toilet to hoist myself up or balance as needed.  I was thinking about one last time before turning in when I just fell.  I usually make a little cry before and as I am going down.  I fell really hard and directly onto my rear.  My body knocked the grab bar off the wall.  I landed with my legs in front of me and my back to the door.  In other words, my body wedged the door shut.  Outside, Tom heard me and half asleep in his rush to get out of bed, has fallen on his hip and is having problems getting up.  Of course, he can’t open the bathroom door and I can’t move.  I am in excruciating pain. I think it’s time for 911.  However, based on our previous history, Tom is resistant.  We are both sobbing – me with pain, him with frustration.  With a great amount of pain, I do bend my knees (good sign!) and scuttle forward so he can get in.  I know it takes forever and I know it’s excruciating but somehow we get me onto all fours and then into bed.  I demand my MMJ, Baclofen, ibuprofen, and a Chinese roll-on medicine.  I do sleep.

I am scheduled for an MRI, CT scan and xray for the 29th.  I am the only driver.  It’s literally 3 miles down the road.  Tom has declared in the midst of everything the night before that I’ll have to cancel.  NOT!! I need these tests so that my neck surgery can proceed.  I feel well enough to drive.  The MRI and CT scan are hilarious.  Well, actually not as it involves this young fellow lifting me on and off the tables as I scream.  I did forewarn him.  On a positive note, I did get  a fair amount of steps in.

I have started a new program with the MS Gym plus I do exercises learnt at physical therapy and crunches every night.  It’s so not happening.  I miss my crunches and feel I am like a wicked witch and everything is melting and sliding. My therapist tells me I am a very strong woman. I can agree to pigheaded and stubborn.

Pet peeve:  I HATE,HATE when I tell people I have fallen and they say. “I am so sorry.”  Arghh!  Did you push or trip me?  Did you fail to buffer my fall?  If that is the case then be sorry.  I say I fell because you need this information like for the tests or the dentist.  Saying you are sorry makes me feel pathetic and childlike.  You have nothing to be sorry about.

I continue on and the tops of my hip bones are painful.  No bruises emerge as even though diminished, I have a relatively padded derriere.

The test results are available through the patient portal.  I see “edema” on the report for my lumbar spine.  Hmm, bad fall?  My appointment with  the surgeon is this coming Monday.  This Tuesday evening the phone rings after 6 p.m.  It’s my neurologist, the one who considers patients part of her extended family.  “Susan, have you fallen lately?”  “Yes, two Sundays ago.”  “Has your spinal surgeon called you about your tests?”  “No.” I hear a deep breath and know this is going to be bad.  “Susan, you fractured your tail bone.”  I feel swimmy.  “No, I didn’t.  I bruised my hip bones.”  “No, you fractured your tail bone.  I hate telling you this over the phone.”  I feel like crying and am seriously scared.  Through a haze, I hear her tell me that it’s not uncommon; it doesn’t require emergency care and my approach has been the right one.

Now, my question is, I have had the results for a week.  Why didn’t the ordering doctor look at the results and advise me?  Waiting till Monday? I rang them and the PA called me back.  Oh no worries, just do what feels  right. Methinks, I need a different surgeon.

On the upside, it’s manageable and once again, no breaks.

Fourth Wheelchair Ride, Ocrevus and Other Tales

Well, if this is Mt. Sinai, this must be a wheelchair.  Right!  I was scheduled to see my neurologist prior to my second Ocrevus infusion.  She’s on 98th Street and the infusion was on 102, four tiny blocks.  As I have mentioned, I did see a new neurologist closer to home.  She works under the doctor who provided my confirming diagnosis.  I recently connected with someone who had her as a doctor.  She called the 2nd opinion doctor a “robot genius”.

The stopgap neurologist had upped my Baclofen to 6 pills a day. I felt I didn’t want or need it.  I was discussing this with my doctor, Dr. F and how the other doctor was just missing.  I told her about “robot genius” and how I term the new one, “mini robot genius”.  We then had a whole conversation about med students, empathy and humanity. She feels it is lacking in her students.  She  considers me, as her patient, as part of her extended family and it shows. We discuss my signing up for the MS Gym.  Dr. F is pleased with that idea and tells me she has other patients who use it.     She assures me that even though I have deteriorated physically my mind remains the same.  I do feel like me until I try to stand or walk.

Ah, now I have to get over the four little blocks to the infusion.  I used to be able to walk a block in less than a minute in high heels!  I really thought I’d be able to struggle the 4 blocks.  Tom asks Dr. F if we can sort out a wheelchair and go underground.  No problem, she’s on her way out (she came into the office before her rounds to see me) and will speak to Mr. Mike. Mr. Mike greets me near the exit.  I get into the chair.  Tom takes the walker and we are off to the races.  It’s a beautiful autumn day in New York City so Mr. Mike decides to whisk me above ground.  It’s odd to be moving so quickly without any effort. I used to love the feeling of my body whizzing down streets, boardwalks, wet sand.  We are zooming along city blocks.  It’s dizzying.  It’s the speed I used to walk at but now I am in a chair and relatively invisible.  I am invisible until we get to the building and the elevator.  Even though this is an hospital, people get slightly huffy by the elevator.  The chair disrupts the space.  Mr. Mike is a rockstar in this building as he used to work here.  The acclaim becomes even more pronounced as we get to the infusion floor.  Apparently, I am confused by referring to it as an infusion.  In this world that’s for cancer patients.  I am here for therapy.

Tom has been insistent that he will demand Nick, my previous nurse as he knows exactly how to hit my one vein. No, I’ve never had a drug issue but skinny veins.  Nick is not in and I get a new nurse.  She is a compact Filipina nurse.  Years ago, I had a temporary  fill in job with a Filipino family I knew.  I described it as selling Filipino nurses to hospitals.  I was terrible at it but apparently the idea was sound.  C looks at my chart and states I must have a good vein other than the one in my hand that Nick has noted. She gets a heating pad, wraps me up and finds a  vein in my arm.  This means that instead of having a needle in my hand for  4- 5 hours I could have it in my arm.  It makes it a little easier.

I am used to the infusions by now.  Tom gets his fill of HGTV as he sits by my side.  I get uninterrupted reading time.  The problem is that I can’t use the facilities for the infusion period.  Actually, I can but it is involved so I have always held it. Yes, in Uruguay as a thirty something for  13 hours!  Buckets and newspapers and curtains that don’t close, do not work for me.  My luck finally ran out this time.  With close to 90 minutes left, my bladder had it.  I caved.  An expedition was needed -an aide holding the IV pole and me, Tom following behind with the walker.  The fun started when we reached the bathroom.  I do have bashful kidney/shy bladder but we were way beyond that.  The three of us caravan into the bathroom.  Now is the tricky bit – the aide has to leave, the pole needs to be held up and me, too.  My recollection is just of me crying out, “no, no I don’t want to fall.” She is tiny, smaller than my new 5’3″ stature but strong. Somehow we manage to get my pants off and me situated while Tom keeps screaming at me, “Be careful of the IV! Be careful of the IV!”  I walker it back to my chair with Tom holding the IV.  The aide literally left. The rest of the procedure is uneventful.  As usual, the next day I was my usual boiled lobster color.

I did come out of it with a somewhat brighter attitude.  I always get a brief bounce from the Ocrevus.  Plus, I have felt that I was getting weaker.  Dr. F asked if I had had an infection.  Bingo!  Teeth.   There’s hope once more at the bottom of Pandora’s box.