Auld Lang Syne

New Year’s Eve of course has been a topic of conversation for the last week or so. It’s been discussed with the kids, online friends and my friends.  I always say that I don’t like it and I can count the number of times I’ve been out on both my hands.  I preferred being home, either with my loved ones or by myself.

So a walk down the New Year’s of my past.

The first time I went out I was a teenager.  I am thinking about 16-17.  It was a group of girls – Debbie L, Susan W, Judy G and me.  We had become friends through political action.   It wasn’t a sleepover, someone’s parents must have picked us up.  All I remember was almost from the beginning, I wanted to be home.  I had been looking forward to it, first New Year’s out and all that.

Next time was in Jamaica.  My mother and I went down to see my Grandmother.  I already knew I didn’t like going out.  My favorite cousin asked me to come out with him and his wife.  I said no.  Grandma said yes.  I thought it might have been the last New Year’s I would ever spend with her and it was.  She died in December the following year.  She insisted.  So at the last minute I said yes and put my gown on.  Cousin rustled up a “date” for me with the name of Elvis.  Elvis was the same age as my baby brother. It was a fabulous party in Kingston.  There was a private tennis court, in ground pool.  I was MISERABLE.  I put such a damper on things that we left almost immediately after midnight.

Glutton for punishment.  The next year I went out with my two friends. See my previous blog “Politics, Friendship and Mortality”.  That so did not work out.

Skip to almost a decade later.  I was seeing someone, an alcoholic in recovery, my specialty.  He asked if I wanted to go to a party.  I told him I didn’t want to go to anyplace crowded mostly with people I didn’t know and noisy.  It was a Black and White themed party but he told me it wasn’t formal.  You know me and my clothes. I had the gowns. In fact, when I was married the first time, my mother-in-law didn’t understand why I didn’t want a wedding gown.  I was gowned out.  We arrive at the party.  It is formal.  We are the only two people not dressed formally.  It is packed with people I don’t know, noisy and crowded and he doesn’t kiss me at midnight.  I miss my family desperately.

Ah, another one.  I broke up with above.  Very messy and a story for another day.  My family always hated him.  My brother announced that I couldn’t be alone and scooped me up for a party at his former girlfriend’s house.  We are that kind of people.  Miserable again and all I can remember was that the little children had dirty feet.  I made my brother take me home before midnight.

Fast forward almost a decade.  I was mad at the man (we always got back together) I had been to the previous party with and thrown him out the house on Dec. 29.  He had turned on Howard Stern on my radio.  What can I say?  I went out that night by myself and met someone.  We went to brunch the next day and New Year’s Eve he asked me out to dinner.  We went with another couple and it was bearable and I was home well before midnight.  Everyone said I must like him since I went out on New Year’s  I guess.  I married him disastrously.

Two years after that we went to Watch Night service at the church.  I liked it. He hated it. There were less than 5 people there.  One of whom was 90!  Praying the New Year in made sense to me.

The marriage was done by the following year and I spent the next years either home with my parents, or alone or had dinner out with the man I lived with for awhile.  Even then, I hated being away from my family.

Just about a decade passes and I am dating Buster the Biker.  He has disappeared for most of the week after Christmas but we have plans to go to the bar we drink at.  My brother is there.  I don’t hate it but am not really happy.  I wanted my parents. Continue reading

Christmas Pudding and the Ghosts of Past, Present and Future

I made Christmas pudding aka Black Cake aka fruitcake aka plum pudding this week.  It’s always been part of my life.  My grandmother made it.  My mother made it.  My aunts make it.    I have always loved it.    I am not a quiet personality.  One of my supervisors told me some years ago that had I been growing up now I would have been diagnosed as ADHD.  A facile explanation for sure.  But this is an old family story.  My Grandma had mailed pudding to my mother.  My mother was talking to my Bubba and noticed silence.  I was two.  Upon investigation she found I had gotten into the pudding.  Bubba told her well at least I would get drunk and pass out.  Uh, that’s not how I get drunk to this day.  I get hyper and very active.  Child is father of the man.

The pudding is one thing that I cannot give up.  It’s an integral part of my Christmas.

My mother made it all by herself when my brother was two and I was around five.  She declared that she wanted to jump out the 6th floor window and would never make it by herself again.  It’s an intense process and truly needs a family.

I was reflecting on how things have changed.  Some parts of the pudding are easier now.  When my mother was a child she remembered the servants tending it over a fire in the yard.  As this was in the tropics, it must have been quite the undertaking.

Traditionally, we made pudding the Saturday or Sunday just before Christmas in the last few decades.  Before that when I was little, it was done earlier as it had to be posted to Jamaica to arrive before Christmas.  That too, was a process. The correct tin and box had to be found, the brown paper wrapping and string, the customs form, the trip to the post.  Of course, if someone was coming or going a chance could be taken to smuggle it in luggage.  The opportunity did not frequently represent itself.  And of course, one received puddings too.  I now send pudding to my father-in-law who states it is the closest thing to Irish plum pudding. Of course, we are all colonials.    We send it after Christmas so he can enjoy it on his own, without sharing. I do share it with those who know it.

This year I made it the Tuesday before Christmas.  I am not working so not bound by the weekend.  I have only done it once or twice on Christmas Eve.  Once recently, due to work.  It made me feel unsettled. The  last Christmas my grandmother was alive, I made one by hand Christmas Eve at my aunt Hyacinth’s.  We had landed from New York that day.  Hyacinth hadn’t done it.  In fact, it really wasn’t a true pudding but more of a raisin cake/pudding.  It was made with raisins that had been soaked with I am supposing brandy.  Hyacinth was big on having a dram of brandy after dinner with a little cigarillo. It was flavored with rosewater.  I did by hand and mixed and cooked till literally around midnight.  I woke Christmas morning with blistered hands. I don’t think we even tried to smuggle our own in.  My mother was aghast that Customs made us unwrap all our presents.  By the way, it was agreed, my pudding, such as it was, was excellent.

Pudding is a huge process and starts months before.  Fruits need to be bought and in my family soaked in port, sometimes with a little rum.  We used to have a brown Mott’s apple juice bottle for the purpose which we kept in the garage.  My husband recycled it by accident a few years back.  My mother would set a box of raisins on a cookie sheet covered with cheesecloth and set it out on the backyard table in the sun to “plump”.  And then the bit I hated and have dispensed with, we had to cut the raisins.  This was done one by one and was a sticky mess.  This practice was dated to when raisins weren’t necessarily seedless.  Then prunes had to be stewed and pitted.  Another mess.  I buy them pitted most years and sometimes I stew, others not.  In the old days the pits were dried than cracked and the kernels also went into the bottle also.  I did that once by myself and had one of those jumping out the window moments. Then mixed citron.   We have had problems finding this in our regular market the last few years.  We were getting desperate.  Bought it this year for $10.00 and my mother and grandma would be twirling in their graves at that thought.

In the past, in the afternoon the day before, we would sit around the table and crack a pound of walnuts.  These go in last as my grandmother said any earlier made the pudding “mecky”.  I buy them shelled.  I am deeply grateful that I can afford to do so.

The night before we “rubbed” a pound of dark brown sugar and a pound of butter together. The purchase of the butter had to be  I did this by hand at Hyacinth’s.  We used to use a hand mixer.    The mixture has to be completely incorporated and change to a pale beige color.  How we didn’t burn the mixer out, I do not know.  My father, who never, ever tasted it would always fret that it would spoil.  They argued about it every year.  I have a Kitchen Aid.  It takes minutes and it’s done in minutes.

The morning of is very busy.  The tins must be taken out and set up.  When I was growing up, we used a pudding basin that must be easily over 100 years ago.  This was supplemented by three tins dating back to WWII.  These were made at that time not bought.  They had very sharp edges and as the years went by began to fall apart.  About ten years ago I mentioned the tins were shot and a West Indian woman told me that there was a kitchen supply place by the office where I could get them.  I did!  They were inexpensive and easy.  Another change.   The tins need to be greased and lined.  We used to do it with Crisco and the saved papers from the butter, and waxed paper.  I use cooking spray and parchment paper.  Cutting the wax paper was always an ordeal.  My grandmother made clothes without a pattern and cut freehand.  My mother cut perfect circles.  And then there was me.  I can’t cut a straight line with a paper cutter.  I lost that job.

Then pots of water must be put to simmer on the stove.  They have to be the right size to accommodate the puddings.  The kettle needs to be full and simmering too to be ready to replace water in the pots as needed.  One of the favored pots is my baby bottle sterilizer.

Next my Gran’s big bowl needs to be taken out.  When Grandma and Ma were doing it that was where the butter and sugar had been rubbed.  It’s a massive antique bowl.  I see smaller ones in antique shops and they are quite pricey.  We used to have a nested set but as this one is only used once or twice a year, it survives.

Assembling the rest of the ingredients:  It requires a dozen eggs.  They should be separated and the whites and yolks beaten.  My mother didn’t separate.  My Gran used to and whip the whites by hand.  In my teens, they compromised and separated but didn’t beat.  Ah, mixers.  I separate and whip the whites and beat the eggs.  This is when my husband starts to implode as he contemplates masses of dishes.  Next is the scale.  Again, a once a year item.  My mother got it with Plaid stamps.  Our recipe require 3/4 pound bread crumbs and 1/4 pound flour. This then gets sieved a cup at a time alternating with the fruits at the end.  First off, I stopped sieving the flour.  It’s a different time.  The flour is fine enough. Then we used to definitely sieve the bread crumbs.  This requires two people, one mixing, one sieving.  I used to sieve then I graduated to mixing.  Now, I do it on my own.  No sieving!

The butter and eggs get transferred to big bowl and now we start mixing by hand.  We add rosewater, vanilla and the secret ingredient – black currant jam.  This jam is so hard to find some years.  The spoon needs to stand by itself when the mixture is right.  This has been challenging in the best of times.  Now, I am weaker and older.  I need help.  My husband stepped up to the plate.  At this point, I feel incredibly sad.  My frailty bothers me.  I remember the last time I did it with my mother, too.  She had dementia but I didn’t realize.  I couldn’t imagine how she had forgotten how to do it.  That night was one of the last times my brother and I had cordial relations.  He stopped by the house, said I had to get out of the house and took me out. I got blissfully, blessedly drunk.  Jumping out of windows was not an option.

Next step the mixture gets divided into the tins and the tops get sprinkled with flour to seal them.  The tins are then shut and in the old days we made a flour paste to put around the edges.  It was my first job and I hated it.  Now I have proper tins that lock.  The next bit was my father’s and he bitched every year.  The old tins had to be tied with string without upsetting the contents so that the tins could be raised and lowered.  Much screaming and gnashing of teeth.  I have proper tins and my husband is amazing at knots so all that is needed is a loop at the top.

Onto the stove to steam for four hours.  The house begins to smell insanely of liquor and Christmas spice.  This drives my husband crazy as he is allergic to the nuts and can’t have any.  You have to keep watch over the pots to make sure there’s enough water.

It’s always a long day.  This year I was destroyed.  I literally hurt in all ways.  I hate not being strong enough.  I honor the past.  Some years it’s easier than others.  This year I miss my mother and my grandmother.  I know Grandma would not let me do it my way, the new overtaking the old.  They were precise women with a sense of what was the right way and wrong way to do things.

The puddings are served with a brandy hard sauce.  Not in my house, can’t take the chance on the alcohol and husband.  More adjustments.

At the end of the day, this is Christmas – family, memories, tradition.

Merry Christmas!

December Warrior Check In

Oh my.  I am not working a job and just realized I missed!  I am changing the questions from today to the previous month.  It’s more accurate

How did I feel this past Month?

Well still mixed.  I am still not working.  I have been getting much needed rest.  It is grand not to wake in the 4 a.m.  hour.  Having no money – not so good.   I don’t feel right about decimating my savings.  I worked so hard to put that money away.  I was finally at a point where I felt comfortable.  I know life isn’t about being material, truly but it was nice to go to dinner at a nice place and not stress, to get nice “stuff”.  I am trying hard not to be angry and resentful as that takes away from me and only lets them win.  I do believe that the evil you do comes back to you so I know the person behind what’s been happening will get it back in spades.  The way the world and life works I may not see it and that’s alright.  I do know that this time though I am not going quietly into the night.  I am going to fight it to the best of my abilities and limited finances.  So, in a certain way it is empowering.  I have reflected on what I have walked away from.  I have always been a great walker. Uh, slightly sarcastic.  Instead of dealing with anything, I just walked away, sometimes literally.

What did you do for yourself this month?

See above.  The rest and exercise have been great.  A lot of reflection.  I have started to write more and reconnect with people.  I am also evaluating how I have and am living my life.  On the fun side, getting ready for the holidays.  The Elves workshop is this Sunday which gives me enormous joy.

What did I eat this month  and how did it make me feel

Trying to return to good eating slowly but surely.  It has to be the key.  What I have been thinking is that it really specific to each person within parameters.  So no gluten is a no brainer.  Eggs, not so sure.  Definitely non-processed.  Sugar is bad.  I don’t think it’s possible to cut it out completely but it can be taken way down.

Did I exercise?  What did I do?  How did it feel – I am going to the gym on a regular basis.  It’s showing in my waist but not so much my legs.  I am not walking enough now that I am not working.  This has been complicated by my fitness trackers not being accurate.  I understand for the holidays that situation is going to be fixed.  I am not getting the same addiction to exercise that I have had in the past.  It is partially due to the fact that I can’t do exercise classes.  I have been faithful with my Zumba but am beyond frustrated that I cannot do what I used to.  In my mind I feel the rhythm and I know how simple it is and my body won’t do it.

For whom or what are you grateful?  What matters most in life?

Blessed, especially at this time of year.  We had all the kids the night before Thanksgiving.  It fulfilled a dream I used to have.  I had a family around a table, laughing and talking and eating good food.  I feel grateful that despite not having a job, I have a home and we can eat.  Oh and yes, we somehow managed for now to have decent medical coverage so I can get the drugs I need to keep on walking

Do I have a higher purpose or driving force in my life?   Make a mission statement

Alright, no mission statement yet.  I believe in principles and integrity.  Years ago a minister told me I had an enormous capacity for joy.   I haven’t lost it this go round yet.  It’s important to share joy.  I tell my little “elves” that every year.  So, I hope that is something I will leave behind. And I stand on principle, proud of that.  By fighting back, I am fighting for others too.  At Zumba, I have been told I am an inspiration.  I have never wanted seriously to be a poster child.  However, if I can show people I believe in my life maybe they can too.

Conventional medicine  Well, I received the Biotin but unfortunately it is too expensive for me to get without a job and is never covered by insurance

Symptoms – Walking deteriorating a bit I think but I see it directly relational to stress.  I am weaker.  I had problems with a 2.5 pound weight the other day.  I used to easily lift 45.  I have had a UTI which also has impacted me.

What symptoms are most troublesome  – Walking as always. A bit wobbly too.

Do I blame myself for things – Same as always. Of course! Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level?

Moderate.  There are days it peaks for sure.  When I take money out of savings to live and when I have to charge things.  But not commuting is so huge.

What can I do tomorrow to make it better than today?  Eat properly, exercise, have an attitude of gratitude, be productive and positive.

Wishing all joy and health in this season of light and darkness.  We shine light in the darkness and then it ebbs into renewal.  Don’t you think?

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.

November Warrior Check In

How do I feel today

Mixed.  I have been getting good rest.  Down side – I am out of work.  So,  I am not getting paid and there is confrontation in my future.  I am angry which is something that doesn’t agree with me.  However, it is an improvement of the stress that I have been undergoing since August.  I just want definitive closure which I don’t see for the definitive future.  It’s Sunday and I read the Times again!  I am slowly, slowly decompressing and getting back to me.

What did you do for yourself today?

I did my stepper and tried to recalibrate my tracker.  I am reading.  I will probably cook something healthy.  I will play with my tea business.  I calculated everything I have earned for the year so I can sort out my health insurance.

What did I eat today and how did it make me feel – Still thinking about food and making good choices.  I did do chocolate but I am doing so much less of it.  I am looking forward to cooking something from Two Moms  in the raw.

Did I exercise?  What did I do?  How did it feel – Well,  I did the stepper and will do so again.  I have been to the gym twice this week.  Being out of work, I will start going practically everyday as I know from previous experience, it’s the only way I will stay sane and healthy.  It feels good.

For whom or what are you grateful?  What matters most in life?

Ah, I am blessed.  Someone I knew a long time ago said I was one of the few people at school that was authentic and cool and still am.  Kinda validates what I am about.  Grateful that I have the wherewith financial and emotional to weather this storm.

I have an opportunity to focus on getting healthy.

Do I have a higher purpose or driving force in my life?   Make a mission statement

Driving force?  Well, I am standing on and committed to principle.  Hope it matters.

How long have I been treated with conventional medicine   I am going to start Biotin this week.Ampyra since April.  Baclufen.  I am seeing more and more about food.  I am thinking about mostly committing through the end of the year.  I should be at home and can couple it with exercise

The first time I had a symptom – June 2004 walking on the beach boardwalk.  This week I walked 11 blocks slowly during rush hour with a cane.  YeaH!

What symptoms are most troublesome  -still hung up on the ugly shoes!  And my hands seem to be weakening.  However, see stress rearing it’s ugly head.

Do I blame myself for things –  Of course! Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level?

Coming down a bit.  Last month, I was returning to uncertainty.  This month is uncertain in a different way.  I feel calmer all in all.  Not getting up around 4 a.m.  Is HUGE!

What can I do tomorrow to make it better than today?   Exercise, structure and move forward

Until next month.

Style and Grace and holding on to cry at home

I can’t tell you how many times I have said to myself hang on until you can get home and cry.  I was brought up not to cry in front of people, not my family particularly, but certainly the outside.  I have tried to live my life, especially when confronting obstacles and difficult situations, with style and grace.  It’s like a mantra for me.  Big girls don’t cry.  I have said “Style and Grace” every time I have been let go on a job.  I use it all the time, most recently in the situations I have been confronting on my job.  Okay lately,   I also take a bubble bath the night before potentially contentious meetings with Not Soap Radio – Bathing with Sharks.

I am getting tired of all of this.  I am hanging on.

So, I was not supposed to cry.  I didn’t receive my diploma on graduation day.  This was huge.  Additionally,  I never thought I would get married or have a wedding so this was going to be my day.  I was tapped on the shoulder and told I wasn’t graduating as we started the processional.  No one understood why I didn’t have my usual smile.  As we dispersed and I saw my parents, I started to cry.  My mother slapped me and covered my eyes with huge dark glasses.  I was out of work for ages and got a job.  I went in to have lunch with the owner.  He told me I didn’t have one; he had changed his mind.  Yes, here it comes another smack and dark glasses.  My husband was arrested and in jail right after my father died and I couldn’t get him out,  I sobbed on my sister-in-law till I wet her clothes.  Came home and started to sob.  My mother looked at me and said ” I thought I raised a grown up”.  And no, of course I didn’t cry when my parents died.  I gave both eulogies, no tears.  This comes at enormous cost. Yes,  I cry,  I gush rivers, just not publicly.  When I was diagnosed, no tears.  When the first physician’s assistant said “I think you have MS” I sobbed in the parking lot, not in front of her.  Maybe three times since 2008.

I am tired of holding on.

I had a meeting with the other ugly stepsister (work)  three weeks ago.  I thought I was being let go.  Stood outside and repeated Style and Grace, style and grace.  Summoned my grandmother’s spirit.  Walked into the room with my head held high and  SMILED.  Bathing with sharks.

So, this week:

I find out on my birthday that my health insurance company is closing.  Do you know how many years I had to wait to get covered for this drug?  It truly helps me walk longer and better.  If you saw me on the street you wouldn’t think so but it is better.  My new normal.  What happens with new insurance?  Scared.

Next,  I return to work and one of the ugly stepsisters wants a meeting with me to discuss what I do.  This is the woman that I reported to briefly.  I was like coyote ugly trying to chew my leg off when I was working with her.  So, once again we go through  “What do you do, how do you do it?” And  she is going to have someone who uses the word “wordsmith” to write something for me!  I can read the handwriting on the wall.

Husband has had a slip or several so I am back to being tense when I get home.  No real safe haven.

I had an appointment to discuss possible options yesterday.  Between the two meetings I literally couldn’t walk and was collapsing, bent over.

Today, I still felt still weak. Lots of training, walking, meetings.  Ran into guy who brought me back to this place. He’s been trying to save my job.  Calls me into a room so I thought I was finally getting the move and recognition.  NOT!!  My agent who handles my billing is going out of business.  No one else wants to take me on.  Essentially, this means I am out.  What do I do?  Go back to my desk and frigging smile!  Ok so I contact the trifecta- my doctor, lawyer, accountant.  In addition to my smile, I am known as a survivor.  Keep on murmuring style and grace.  My body is channeling all the stress and I lurch to the train.  They change the track and the escalator and elevator are broken.  Nearly fell going upstairs.  I do make it to the car.  My whole plan this afternoon was to get home like a pigeon and cry.  I started to cry close to home on the phone with my husband.  His response?  “Don’t be such a girl”.

No tears but my stress pattern is reverting to two I had years ago.  I used to have pre-fainting – pre hyposyncopia (sp).  I turn grey and my eyeballs roll  up in my head but I don’t faint.  Later years, I got palpitations.  Tonight both.  I know it’s holding the anger and the tears.  Now with this condition it goes through my body.

And tomorrow – style and grace.

My Birthday

Well,  I hit my milestone today.   I have been so wrapped up in this for the past year.  Finally, this week I decided it wasn’t all of that.

So,  I took time off from work and drove up to Finger Lakes to spend some time with one of my besties and husband.  Sunday night we sat outside on the deck and watched the blood moon.  A magical beginning.

Today we drove and saw art and did a little shopping.  And then great wine with friend.

I feel so blessed.  I may have problems walking but I am surrounded by love and new possibilities.  Both my stepsons and their girlfriends called me.  I had best wishes on Facebook.  Messages from friends when I woke.  Awesome card from husband.

I have hope despite all.

Age is a number and a troubling number at that.  I have never done well with numbers.  Can’t say I am looking forward but not looking back either.

I will make this last part of my life count!

I am so blessed

When It Rains….

I am having problems at work.  Change in the organization and I am no longer allowed to work at home, even with the doctor’s note.  I am getting it sorted but in the meantime it’s having a significant financial, mental and physical impact. I have a letter from my doctor saying I should not be in the office when is 85 or more.  Me, I thought 90.  The problem is I commute and am in the subways.  The first time must have been 6 years ago or so and I arrived home with 102.5 fever.  I was in Times Square and all of a sudden could barely walk.  Doctor didn’t know what came first.  Until  I get sorted out, I am continuing to go in.  I see where this is going – oh she can’t be here and she can’t do the work.  So I struggle and husband comes in and helps me home.  It is expensive.

Wednesday, when I left they were announcing delays and signal problems.  Normally,  I would have turned around and gone home and worked.  Wednesday would have been perfect as I had training scheduled with Ireland and they had wanted it early but in the office my best offer is 730 a.m.  The ride which is usually under an hour was almost two and a half.  I can’t sit or stand for long times.  Then just as we started to move,  I heard for real for the first time “Is there a doctor, medical personnel or law enforcement on the train.  If so, please come to car number in the front of the train.”  Now,  I get out in NYC, people are late plus it’s peak so a pushy, fast mob.  Exactly why I travel alternate hours.  I miss my pill which helps me walk.  No water and it can’t be broken apart.  Get on the bus and they announce a detour as the street is closed.  I can’t make this stuff up!

My husband can’t come in and help me because the trains aren’t working,  I have to leave early to avoid any mess.  I do make it through the stations in the high heat.  I arrive at Penn, with  4 minutes to spare for a train to where I need to go.  I have to tell you I love travelling with the construction workers.  They pick me up when I fall and super polite. I had to walk downstairs – numerous offers of help and no one pushed me on the train.  I get a seat!  Settle in like a bird in a nest.  Announcement:  We are experiencing equipment problems.  Really!  Luckily, it sorted out.  I was so grateful.

Cut to this morning – I have on a white toile dress.  Get my coffee, granola with milk, walk into my office/den and left toe goes.  Everything flies all over the place.  Upside nothing broke – not my body, not the cup, not the bowl.  And miraculously, not a drop on the white dress.  I know I fell due to the stress!

But I am now off for a few days!

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.

August Warrior Check In

Life is still intense. I am thinking about the “default future”

How do I feel today –   Pretty crappy.  I was in a slightly manic phase the last few weeks.  I couldn’t do things fast enough.  I knew I had to crash and I have.  I put in a high stress over 50 hour workweek this week.  Bed late every night.  I made a presentation to our head on Friday.  Well, all I can say was it wasn’t negative.  It is hard to live with the continual uncertainty about the job.  There never seems to be enough time.  I am a Libra and feel seriously out of balance.  I need to clear the decks and can’t.  I have started a new venture except I haven’t.  I have the skills and the tools to rock it and little Miss Sabotage strikes again.   The MRI shows no change but I seem to be getting worse.  I  think  I am going to look into genome testing.

What did you do for yourself today?

I tried to sleep late.  I read the Sunday times,  yeah!  Straightened up a bit.  Sent in a job application,  sat outside in the gazebo. Did NOT go grocery shopping or any kind of shopping.

What did I eat today and how did it make me feel – Getting back to clean and it’s the right thing

Did I exercise? What did I do? How did it feel – No excuse not to go to the gym and I didn’t.  Miss Sabotage.  My fitbit has been wonky lately and I know that I had at least two days closer to 12,000 steps.  Ain’t drugs grand?  But zip didn’t record

For whom or what are you grateful? What matters most in life?   I am blessed with the most amazing friends, truly.  I have a husband who watches over me.  I continue to have possibilities.  And this year, beautiful flowers in the garden

Do I have a higher purpose or driving force in my life?   Make a mission statement –   Never give up?

How long have I been treated with conventional medicine Ampyra since April.  The Ampyra continues to work.  I am walking more with less fatigue.  Friday high stress day and took subway to Village during rush hour

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Think it’s time to add last time -off balance, weak knees

What symptoms are most troublesome -still hung up on the ugly shoes!  And my hands seem to be weakening

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this. Still!  I let go of me and who I am and could be.  Same as last month

How is stress level? Skyrocketing with work issues

What can I do tomorrow to make it better than today?   Rest, take a step back.  Contemplate that default future and SMILE

Until next month.