Failure and Rising Again

I did not make it to the Black/White Masquerade party.

I did attend my tea.  I was relatively sedentary.  My friend did help me walk around the room.  With her help, I successfully bid on a Luau basket.  I guess there’s a party in my future.

The problem started because the car was parked much further than usual.  It took me about 15 minutes, easily, well not so easily, to get to the car.  I arrived home later than planned.  I was totally knackered but put my feet up.  I began to modify my plans – touch up makeup instead of redo; leave hair as is and not swap to hair ornament, leave Victorian knee highs on.  I did contemplate staying with the floral sneakers but really wouldn’t work with black chiffon skirt.

Next, I had a problem pulling the skirt on.  As much as I dislike it, it has an elastic waist.  Comic but not, seeing Tom trying to pull it on for me. Then I tried to stand up and gracefully collapsed into the chair.  Then I did it again.  It was scary.  I realized that the mask was still upstairs; the cards weren’t signed.  It was overwhelming.  I just couldn’t do it.  I hurt.  I was weak.  I would not be able to get there until much later.

I have always believed in a cost benefit analysis.  If I had to go to work in seriously bad weather or snow, I always did this.  Sometimes, I went; sometimes I didn’t.  Well, CBA on Saturday, said it wouldn’t work.  Being so collapsed, I would not be safe driving.   I would barely have been able to walk.  I was devastated but cancelled at the last minute. This is so not me.  It was always a joke when I was much younger that I was always up for a party.  For awhile, my nickname was Flash because I was always ready in a flash.  Nor did I let sickness deter me.  I recall a dinner dance cruise around Manhattan in the 80’s with a 102 fever body suit with wrap skirt, shawl and glitter.  Everything glittered for me that evening.

I was bitterly disappointed this past Saturday.  Firstly, if I had been able to go I would have needed the walker.  Secondly, that I wasn’t strong enough at all to go. So, as per my usual Joe Palooka doll self (you know the children’s punching bag toys that you hit and they bounce right back), I decided that iit’s time yet again to amp things up.  I have started the MS workout program.  If I stick to it, I should get results.  I am going to push more on a daily basis for more steps.  I will get outdoors this summer.  I refuse to bow to defeat.  My plan and goal is for this to be the last event I lose to this condition

Masquerades, Zumba, Mobility

I have been invited to a Masquerade Black and White Party in honor of my Zumba instructor, Wanda.  I actually had not opened the initial invitation as her birthday is in early April.  Not only did this conflict with my infusion but also I have found it impossible to cross the street where classes are held. This is Saturday and at a hall.  I wrote a Yes, then a No, then Yes; finally sending a No but getting ultimately  overruled.

I started with Zumba and Wanda  years ago.  I had a friend who wanted to take a free Zumba class at the library.  I am thinking 2009 because I already had been diagnosed.  I really went along to humor my friend.  It was held downstairs at the library and I arrived early to describe my problem to the instructor.  No problem at all, she exclaimed.  Do what I wanted and what I could and she’d watch out for me.  I took my shoes off because when I dance that’s what I do.  I had a blast.  When she announced Pata Pata; I was sold.  My healthy friend, by the way, stepped out into the hall halfway through the class, winded.  I just had to rest at the top of the stairs before I put  my flip flops back on.  I couldn’t sign up that Fall when Wanda started offering classes through the Town but I was there in the spring and never stopped till 2 years ago. I am of Caribbean descent and the music played in class is the rhythm of my youth.  They play Belafonte.  In fact, when class initially started, there were quite a few West Indians.

I used to dance at the front of the class without the spectral leg and I’d do the hour or most of it, most days.  And in the winter, the winter when it was frigid, we’d prop the doors wide open and let the cold in, and turn on the fans.  It was always a packed class, 45 people.  The Town thought we were doing so well they put in a mirrored wall which discombobulated us because that’s not how we danced.  We danced facing the middle.  Class was originally supposed to be two nights a week but when Wanda could, she’d offer more.  One spring, I was going four nights a week.   I swear I queered a job interview in another state because I just could not imagine not going to Wanda’s class.

In the summers, Wanda took a break.  We lost our Town space because it was in the pool building.  And after all, it was vacation time.  Wanda would find a place for a class or two.  One year, it was at a beach club.  My condition was beginning to take a stronger grip on me.  I found the shore breezes were buffeting me and I could not continue.  I had always considered myself sturdy before t his.

Returning to the full group in the fall was always joyful.  This class is how I envision the world.  There are all sizes ,ages,  colors and yes, even men.  Deaf mutes; they feel the beat.  It’s a real community.  They have been supportive of me as much as I would let them.  Originally, some thought I was the woman with a stroke.  They have watched my downward slide without comment, which I appreciate.

Which brings us to the masquerade party Saturday evening;  I will be attending solo with the protective shield aka rollator.  I will NOT be wearing Frankie but one of the other spectral legs.  Wanda reached out to me to come.  She said, “You’re one of those who definitely had an impact in my life.”  I HATE, HATE that kind of thing with this.  Once when I couldn’t do what I wanted to, I went outside followed by Wanda’s mother.   I was near tears in fear, frustration and rage.  She told me I was an inspiration to the group,  I was absolutely horrified.  I refuse to have my life considered inspirational.  Here’s the thing, we all have to live the lives we have.  In my case, I have tried ( at least in my mind) to continue to do what I’ve done.  It’s a choice.   I could have decided to throw in the towel.  Either choice is valid.  My choice is my quixotic idea to continue.  Not inspirational.  Inspirational is the man with one hand playing pro ball.

So,  Saturday evening, I will see  women I haven’t seen in a few years.  I dread the “OMG, what happened to you?”  I stopped going to Zumba after a summer’s break.  It had reached the point where I could only manage 1 of the two weekly sessions when I was working.  The class had moved to a larger space.  The downside was parking was across the street.  I started to need help.  Initially, not so much going but coming out and crossing slowly across 4 dimly lit lanes of traffic.  Also, I don’t like to identify as a victim so after dark, help was needed.  It was insidious.  I started to need company to cross.  I had had the security of the wall for some years but now I needed a chair and less endurance.  Then I lost my job and with it not only my income but my walking.  Even going to the gym was not enough.  Here I am in the rollator.

Normally attending a Black and White Masquerade party I would have been levitating. As it was, I was, Yes!  Tom was excited as we both know, I need more physical friends on the ground. And then, and then.  Him: “what if there are stairs?” Me, “What am I going to wear?”  All of this followed by   the reality – could I drive?, could I move? Could I do it on my own?  And me with the pounding thought – what am I going to WEAR??

I love my clothes.  It’s how I view me.  I create the persona.  It’s an expression of my creativity.

I have been to  Black and White parties as well as Masquerades.  I had a magical evening  at Tavern of the Green.  Another time a boyfriend told me it was Black and White casual. DUH NO!  And my husband, totally, unfamiliar thinks it is a race thing! I have tons of all black clothes and black and white clothes.  The problem is my shoes.  All of the above are impossible with Frankie and the clodhopper sneakers.  Last year, I wore a long, black chiffon skirt with pewter, perforated oxfords! UGLY!   It hurt my soul.  My feet burn, despite larger shoes, blah,  blah. I know this is going to drive me Wild.

Masquerades make me nostalgic.  I always have masks.  One wall in my bedroom was masks.  Now, I can find only one.  Drat, there definitely was one with white feathers.  One of  my ex’s daughter had an Halloween wedding, masks required.  The wedding  party was black and white.  The bridezilla was upset that the priest wouldn’t allow her to wear her vampire teeth and the groom left the tiara home.  In addition, the place cards were also masks.  The uncle was given a devil mask.  He heckled the best man’s toast.  One of the guests exclaimed, “It’s just like “Eyes Wide Shut”

I know I have to go.  I cannot ignore  the graciousness of the invitation.  Nor can I not take the chance to miss my community.  I fear it.  I don’t want to deal with the OMG’s, the ugly, hurting shoes.  I won’t be able to dance with  women I used to dance with.  I shall be dependent which I HATE because someone will have to walk me to my car after dinner. And I am worried as I have a tea in the afternoon.  My energy will already be tapped into.  I feel like me when I am seated so it will be challenging to even sit through dinner.  I’ll focus on the accomplishment of being there, fighting back, starting to rise again.

Still Fighting – Zumba

Last night I went to Zumba.  I have been going regularly for over five years with the same instructor and almost the same group.  I love this group.  It’s a microcosm of life the way I always envisioned it.  There are women of all sizes, shapes, weights, colors, races.  There are even deaf-mutes.  They feel the vibration of the music.  We all have fun.

The first time I went was with a friend who wanted to go to a session at the library.  It was downstairs and I thought I wouldn’t be able to do it but when along for the ride.  She couldn’t do it and I could.  Going upstairs was just the tiniest bit difficult.

The first season I was able to dance in the front.  The music and the dancing connect me with my childhood and my mother.  As I have said before in my house, we danced!  And the music is Caribbean.  I feel it in my heart and bones.  I was finally old enough and secure enough to  just be and do it!  At the end of the first year one of the women asked me if I was recovering from a stroke.

I had to change over the years to being by a wall for stability and balance.  Then in 2012 I had to start wearing the spectral leg.

Two years ago the venue changed.  I had to cross four lanes of traffic without a light.  I missed most of the first winter till it became light.  Now, I need help.  Last year with all the snow and ice, I missed again.

The sessions only run from September to June.  I did most of the classes in the fall.  December there were only two classes.  It started again last week.  It’s now in a gym and I forgot the sliders for my shoes.  The next session I had hurt my back and couldn’t make it.  Last night she started off by playing one of my favorite old songs.  This used to be a no brainer.  I could barely do it!  And then more of the music that sings to me.  What’s horrible about this is my mind  doesn’t realize I can’t do it.  I feel it and then my body is so not doing it.  Yesterday, I used our treadmill for 10 minutes and then went to the gym.  A newer person told me I was doing    great last night.  To me I was not.

So, what’s next?

Well, I am back on track pretty much food-wise.  Also, amped up the steps so it was a little better.

I am angry.  I refuse to continue down a deteriorating  path.  I am going to fight harder – better food, better exercise, better rest.

My goal?  Do a full class by spring.

Keep on dancing!

Thanksgiving and My Soundtrack

Like I’ve said before, in my family, for holidays, for anything, we danced.  I find myself now barely being able to dance, let alone move.  We have the ipod on with one of my playlists.  I am maudlin.  I think it’s safe to drink wine.  My cheeks are rosy, my body is trying to move and I am thinking and remembering – songs from my playlist

Tainted Love – Soft Cell

I knew about AIDS long before the general public.  It was 1980 and Bobby O’Hara dumped me, again.  For what he told me was another woman.  I was working at the ubiquitous Izod, hating my job and my life.  Gary G. was gay and sat next to me.  He had been dumped too.  He would sit next to me in the afternoons and sing Tainted Love.  Little did I know how apt it was.  Gary told me about AIDS and gave me condoms.  He told me about this disease.  Ah, the cart was before the horse.  Bobby didn’t leave me for a woman but for a man.  Poor closeted boy. Midway through 1985, Bobby had died of AIDS.  I was safe though I didn’t know that for years.  Tainted.  Great way to get rid of unwanted attention and sometimes unfortunately wanted “My boyfriend died of AIDS”

Thunder Road – Bruce Springsteen

This song kept me going at least once. It’s one of my anthems. I grew up in Levittown.  One summer I played it over and over.  “It’s a town full of losers and I am pulling out of here to win”  I always wanted to leave and never did.  I used to see that road stretching out in front of me like a promise.  Well, I guess I finally did leave.

Good Thing – Fine Young Cannibals

Kevin always changes his voice mail to music to reflect what was/is going on in his life.  So things fell apart between us and Good Thing started showing up on his tape. I was his good thing.  Lord, that man could dance. He had this incredible body.  Life is all connected ’cause I took him to a party at Gary’s, didn’t tell him Gary was gay.  The man spent the party in a corner with guys saying “ooh, who brought Nick Nolte?”  Both of us can barely walk.  He would never ever  come for Thanksgiving even when we were together.  I was his good thing and he has always been mine.

We just disagree – Dave Mason

“There’s only you and me and we just disagree”.  My college love.  I used to play this for him.  I believe I bought the Boz Scaggs single, “It’s Over”.  What a mean bitch I was.  We are still friends.

Brown sugar  – Rolling Stones

Terry Toni and I used to dance to this at frat parties, smells of weed, alcohol, hormones  We would jump up like cheerleaders at the end, “yeah, yeah, yeah”  the three of us.   I see Toni on FB and she looks the same.  I am close but changed.  Terry and I can’t dance anymore.  Terry used to shimmy and shimmer.

Trucking – the Dead

When I first heard it, I didn’t know it was the Dead.  It was a band at Hopkins called Ocean Rose.  This song is inextricably connected in my brain with the smell of magnolia and beer. I have always maintained that beer spilled on the earth smells like flowers.  I guess it dates back to that time.  I remember the innocence and along with the scent of flowers, the scent of possibilities.

America  – Simon and Garfunkel

“I am empty and aching and I don’t know why” We all listened to Simon and Garfunkel.  Our junior high school music teacher went to high school with them.  America is different.  We used it as a processional for Social Action Youth at the temple.  A few years ago, I heard it again. The words resonate.  Cars on the New Jersey Turnpike and blasting Bruce Springsteen and the speed limit.

LA Woman – The Doors

I was newly thirty and so in love.  Kevin and I went to LA.  We landed and were driving at sunset.  This was playing on the radio. The air was warm, soft and glowing.   I thought that this was what it was all about.  See previous Kevin comments.  Well, we are still friends but LA left us behind.

I’ve got a rock and roll heart – Eric Clapton

Yes, I am bad.  I was having an affair with a married man.  He fancied that he looked like Sean Connery.  He wanted me more than I wanted him.  I was with Kevin, see above.  Yes, Kevin found out, was hurt and called his boss.  Roger wanted to leave his wife and was promising me the world.  What broke us up?  I believe in this song. I have a rock and roll heart and knew he didn’t.

Diamonds on the soles of her shoes – Paul Simon

Kevin used to tell the dog, well it’s Paul Simon, we must be at Tres’s again.  But this song, this song I associate mainly with someone else.  Kevin and I were not working out after years together.  I was so unhappy.  (See another blog for more on this)  My dad gave me money so I could take  a cab.  I was wearing patent leather flip flops with a rhinestone center.  This song for me is drunk and happy.  He was Irish.  I brought him home for Thanksgiving.  My mother said he was a transient.  He left me.  My father never said anything about the money.

Breakfast in Bed – Chrissy Hynde but originally Jamaican – Lorna Bennett Lorna Bennett

Ah, this is the beginning of my night life.   Kingston, Jamaica 16 years old and this played everywhere. I went to night clubs with my cousins, boy cousins and girl cousins. I danced.  I remember Epiphany, all black light with cocktail waitresses with wings and the scent of my cousin’s English Leather.   Certain lines influence your life, or at least mine.  This song, along with Faces “Stay with Me”  became my mantra – “Breakfast in bed, you don’t have to say you love me”.  Trying to understand why I felt that way at 16 before things in my life even started. “In the morning, don’t say you love me or I’ll only kick you out the door”.  Shape of things to come.  My beginnings

We didn’t get through the whole list.  It is the soundtrack of my life.  I am grateful for the music and for the insights it brings sometimes.  I miss dancing but my legs still move and my heart still sings.

Evaluating, Instincts and Perspective

It’s been a hard few months for me.  Particularly, the last few weeks.  I very rarely admit it but I have a streak of a workaholic in me.  Years ago, one of my friends told me I was the same as her except I did the extra work at home in the bathtub and in my bunny slippers.  My assistant used to go “Grrr, I see you wrote this in the bath again.”  That situation ended badly.  I was in that job for nearly 9 years.  I increased their business.  I literally made myself physically ill and as I have mentioned the roots of my present condition lie there.  I went to Asia on business when I could barely talk or breathe.  Forget experiencing Asian cuisine in Asia; every place I went they poured soup and tea down my throat.  Here’s what I did:  I left Taiwan at 11 o’clock in the morning, landed in LA 11 a.m. the same morning and worked till 11 p.m.  The men always stopped in Hawaii with their wives.  I  flew home to NY and collapsed in JC Penney.  Several years later I was let go from that company.  It was awful.  I had invested too much of myself.  I was left without myself.  I was severely depressed.  I got married.  Yes, I know.  And that made everything so much worse.  I was unemployed or under employed for 10 years and then I got this job.  Financially, I was back.  The first four years as an employee were great.  I left it at the office.  I worked late once or twice.  There was a downsizing and I was let go.  I said “Thank you.  Summer on the beach with shells in my hair.”  My condition manifested itself for the first time that summer and we put it down to stress and lack of activity.  Working, I walked miles a day, literally.

Cut to the present:  My life has been out of control and out of balance.  I went back as a part time consultant.  It was never really part time.  I joke the reason I was approved for my mortgage working part time was a major project went live the month they looked at my financials and I was doing over 40 hours a week.  Well, once I went back full time I started at around 37.5 a week.  I told my manager when I started back that  I knew hw he was and it would be more.  He swore to me I could be out the door by 4:30.  Well, that lasted a few weeks when I was told they needed more time.  Our agreement was that I could do it at home.  For years, I have done nights and weekends. 2007 – 2008 averaging 50 hours a week.  Note the word average.  Once this condition began to impact me I worked more and more from the house.   I work in an IT department so it’s relatively technologically advanced.  I laugh as every other Friday from home I am in a meeting with New York, New Jersey, London and Ireland.  This year even though I worked from the house I have been averaging closer to 45 hours a week with a lot of weeks 50 – 60.  Yes,   I do bill by the hour.

Recently, the two people I have always worked with except for a hellish 6 months were reorganized out of my area.  First hint – no one knew what to do with me and I heard unofficially I was going back to Hell.

In the interim, the group head starting signing my time sheets August 1.  I worked 48 hours one week to deliver a major project.  She said it was over time.  I said you owe me a lot of money then.  Upshot, not allowed to do more than 40.  Okay, I can live with that.

I work remotely on Friday and have done so for a few years or very, very short Fridays in the office.  It  is too dangerous for me to commute with the weekenders and I do have fatigue.  I have a doctor’s note.  I usually work longer on a Friday as I don’t have to commute.  The doctor wrote me a letter not to work when it’s 85.  This hurts as remember, summer on the beach with shells in my hair.  She apparently is not honoring this.  This means unless  I come in and jeopardize myself I lose a week’s pay a month.

A friend texts me Thursday night that the company has posted a job opening for Learning and Development.  I look it has been written to exclude me – must be able to sit or stand for long periods.

So, I  find myself in the same position I was over 20 years ago.  I did it again.  I put my heart and soul into this.  I cared. I did their work at the expense of my life.  They would call it scope creep at my job.   I can’t believe I bought into it.

I used to work in the garment industry and was laid off all the time.  I just had a sixth sense as to when it was going to happen plus someone would tip me off, too.  The only time that didn’t happen was when I was let go from my short interim position while I was doing little part time for the bank.  For the last three years,  I haven’t been feeling right there.  I have very positive moments and very positive reviews.  However,  this morning I said to myself “Face the facts.  You are going and sooner rather than later.”  I already had started taking things home.  However, when my credentials/capabilities were questioned. I brought in framed copies of my certificates.

I find myself feeling sad, nervous and betrayed.  I have to hold onto the belief that someone will hire me on suitable terms even though I am technically old, limp and use a cane.

I am resilient.  I always try and see the upside.  So being home for four days has been a blessing.  I am getting to catch up on my life.  I spoke to three friends on the phone yesterday, a luxury.  One was one of my exes (yes me and the eternal exes) and he had been with me for part of the first time.

I am approaching a milestone and am frighteningly aware of my mortality.  But this is an opportunity for new horizons and new possibilities as I approach this.

Flip Flop Girl

Somehow I never posted this:  And it’s summer and no flipflops:

I love flip flops.  I always have.   When I was little, the other little girls wore them.  I wasn’t allowed except for the pool.  We called them zorries or thongs.  My mother called them slam patters.  My mother had very definite ideas about children and shoes.  In the spring I wore saddle oxfords, white.  They had to be polished every Sunday night with that horrid white polish.  As soon as I was old enough not to wear them.  They became fashionable.  It is one trend that will never work for me.  In the summer, something like the Greek fisherman’s shoes.  Buckles and perforations.  In the winter, suede ghillies that had to be brushed.  Not fun.

I got away from home and started wearing them in summer on the beach.  They were like 19 cents and unfashionable.  I had more than one pair.

I met a man who wore flip flops and loved the beach.  Well, I still have his flip flops.  I would get all colors and kinds.  I would wear them with everything.

I went to a party in a turquoise mini skirt at the start of fall with black patent flip flops with a fake diamond in the center.  Diamonds on the soles of her shoes.

Then I married someone who didn’t wear flip flops and things just spiraled downwards.  He didn’t like the beach because there was sand.  I felt like I couldn’t breathe.  I left and moved home to my parents.  By that time, my mother would wear them to water the lawn.  And I did have a few that I wore with censorious views.

I moved in with another man, older.  He knocked the joy right out of me.  I left.

I got an apartment and bought pink platform flipflops with pink flowers.  My best friend same over and said Thank God you are back.  “What do you mean?”  “You are wearing flip flops again”  From then on, it was flip flops in the summer, even at work.  And I work in a bank.  During the blackout of 2003, I walked out of New York City in a pair of black platform flip flops with glitter straps.

People bring them back for me from trips.  I have ones from the Far East and from Hawaii. I could go on and on.

And up until two summers ago, I was still wearing them at the bank – gold ones, silver ones and black patent. The gold ones are still under my desk.  At one time I had over 10 pairs of shoes under my desk.

I can’t wear them any more!  My feet no longer grip them.  This destroys me.  It’s my persona.  I miss me.  Instead I have been reduced to tie shoes – back to my childhood.  This is not right.  I mean really. No flip flops?  Also no beach, no walking.  This cannot continue.

So what do I do?  I’ll tell you, I haven’t thrown out a pair, even the pink platform ones.

With work this summer, maybe I can wear them again.

She Gonna Cause the Rafters to Ring- Dolly Dawn

Dolly Dawn – part of my childhood.  I come from a mixed family.  My mother was Jamaican and my dad was from NY and Jewish.  We celebrated everything.  They respected each other and their faiths.  So tonight the kids and I celebrated Passover.  It was one of those weeks.  First night of Passover was Good Friday – not happening.  Saturday they had a Seder with their mother.  Sunday we celebrated Easter.  Monday was out due to Sunday.  Tuesday I had a doctor’s appointment.  Wednesday was their mother’s birthday so here we are tonight.  I came in late as the trains were beyond messed up and just turned on the ipod.  It was West Indian music.

After they left, I cranked the Belafonte. And danced.  Well, it kinda resembled Tom Hanks in Forrest Gump.  But I sang the songs of my childhood and moved. I played calypso. 

Pretty, pretty Dolly.  She gonna dance, she gonna sing, she gonna cause the rafters to ring.  In my family, we danced, especially around holidays.  My dad used to spin me and sit down.  We would limbo.  I felt reconnected tonight. I miss my family.  I miss dancing.  I kinda did it tonight.  It gives me hope – spectral leg and all.

Perhaps Evelyn Brandon, Donald and Elaine Mullins, Garth MoodieFamily and friends – I hear Ska in my mind when I look at this