beach

Valentine Venting and….

Posted on by tresswann

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.

A Third Spectral Leg and Other Woes

Posted on by tresswann

I hate the idea of a brace, appliance, AFO or whatever you want to call it.  So, I have always called it the Spectral Leg.

I had my first one fitted after a visit to an orthopedist.    SeeDoctor Visit, the Spectral Leg and the Motivation of Ugly

So, I finally made the appointment to be fitted with the new ugly.

I commuted for years into NYC and took the same trains.  You recognize the people after awhile.  Around the time, a couple years back when I knew I was going to lose my job, a man came up to me on the train platform and said he had been looking for me.  “You’re the woman with foot drip, right?”  He told me he used something called a WalkAid that I could be fitted for not far from my home.  We looked it up and it appeared to be similar to the Bioness which we had “discovered” a year or so before. When I had asked my doctor about it, she had told me my existing brace was working and it would do pretty much the same.

Well, the place I had to go for my fitting was the same place for the WalkAid.  We were determined to inquire about it.

My second one has always hurt me.  It has caused my foot to burn and I actually get blood blisters on the ball of my foot from it.  Originally I was told it was in my mind or a nerve thing.  Most recently, I was told that my nerves made it worse.  The last doctor didn’t address it at all as he was replacing it.

The fitter asked about what the doctor wanted as he usually writes something more detailed than was provided.  He also asked who had prescribed my current one and how.  My neurologist wrote it as I wanted something less obtrusive and one that would give me better shoe selection.

He looked at it and the way I walked.  By the way, I made my fifth public appearance with a walker.  The brace has hurt me, not only in terms of the physical pain but also because of its design.  It has hurt my walking.  The first one extended to just before the ball of my foot; this one to my entire foot.  Apparently, this has not allowed my foot to work properly which is why I find myself walking so peculiarly.  My knee and hip are more messed up.

Options?  Well, the to the hip one that the doctor knew I wouldn’t wear and thought might be too heavy for me. One that’s like the first but halfway up the ball of my foot – limited shoes and it won’t help the knee problem.   And then a massive ugly one, front, back and sides.  Oh, I do have a choice of white or black and I can have purple butterflies.  I am a woman of a certain age so purple is regal but butterflies!

And while we waited, we read the WalkAid brochure.  Any shoe!  Walk barefoot on the beach.  The beach is my sanity and peace and it’s been denied to me for years!  Plus because it sends electric impulses through the nerves, it could refire them.  The fitter says I can have it but it won’t help my knee and the way I walk now.  I feel like weeping in frustration and anger.  It’s a little bit me, a little bit them.

So for now, my plan is to get and wear ugly and fight.  And TRUST MY INSTINCTS.

My instincts say wearing it all the time creates dependency and weakness.

How does anyone navigate this mess?  And this fitter doesn’t believe I can improve.  Maybe I am a fool but I don’t buy that.  My plan is to really max healing my knee and getting the WalkAid.  Beach here I come.  Maybe I am delusional but that’s me.

Jeans are not just Jeans (and the Memory Motel)

Posted on by tresswann

Just about 20 years ago, I was living with a man, may he rest in peace, and it was not good.  We reached a point where he took everything out of me.

I have never real been a jeans person.  I was brought up in a household where ladies didn’t wear trousers, let alone jeans.  I always had the odd pair for mucking about.

I left him, started a new job and moved.  Not too much stress. Still, as is my way, we stayed in contact.  Prior to getting the new job, I had been pretty much subsisting for several years.  Jeans were not a necessary.  I was unhappy with him.  I gain weight when I am unhappy.  He gave me jeans that no longer fit him.  At my new job, there was dress down jeans Friday. The 20 year old used  to laugh and say “Boyfriend jeans.”  I was happier and walked tons every day.  The weight melted off even though I had a big cookie every day!

I had been in straitened circumstances for a year.  However, the following year, I bought a pair of jeans for me for nine dollars.  I also had tons of vacation time and little money.  One of my friends had a holiday voucher he hadn’t  used for Montauk.  I loved Montauk.  This was in the very early aughts before it became a hipster destination.  I paid my friend  a nominal sum and headed  East.

Now, in the early 80’s I had a share in a house in Amagansett with the 70’s high school cheerleading squad.  They were preppy before  it was a thing.  They used to line up their Weejuns at the edge of the beach.  I was so not preppy.  Definitely, not a Weejun person.  They slept in T shirts.  I slept in lingerie.  We would go dancing at Shagwong’s in Montauk.   It was OK.  I wanted to go to the Memory Motel.  Yes, the Memory Motel  Rolling Stones one.  Memory MotelThe cheerleaders opted out.

Fast forward to 2001ish and me in Montauk.  I made a beeline to the Memory.  Well, in the intervening years, things changed.  It was now a dive bar.  Fine by me.  Me and my 9 dollar jeans and flip flops walked in.  Happy hour.  Pool tables.  Beer.  My poison has always been Scotch on the rocks.  I breathed it all in.  The man I left did not like going out at all. And when we did, he accused me of coming on to everyone.  It felt so good to be out and about.  I walked, so no worries with drinking.  And as always, men bought me drinks.  It was a different world to when I had last been up and about.  Men were trying to sell me on their prospects.  Inevitably, I picked up someone, Billy.  We went out for steak.  And he asked me out for the next night.  Dilemma – what  to wear?  I had already packed myself into the jeans.  I had to do it again but with a changed top, one that could cover my packed in tummy.  And please know, I HATE  wearing the same thing twice.

So, we go out for drinks. And he said, ” I know that Susan likes to drink.” (Ya think) “but what else does she like to do?”  Great question.  I had fought so hard to retain what identity I had that there wasn’t a lot leftover.  I forgot that I read, garden, cook, write.  Lesson learned.

I bought other jeans and no, I never saw him again.  I always packed my tummy into those jeans when I could.  Sometimes, I couldn’t even zip them up.  They became my gardening jeans.

Fast forward again to this past weekend.  Life has changed and I own more jeans.  But, and there’s always a but, I have lost weight and they don’t fit.  And the rest were somewhere else.  I don’t wear jeans in the summer.  It’s the change in season so no clue as to where they are.  The weather snapped and it was cool Sunday morning.  I had to drive Tom to the blood bank.  Gardening jeans! Hadn’t worn them in ages as gardening is something that’s been taken from me. And they were baggy.  First time, ever.  But… the spectral leg can’t be hidden.  When this nonsense and that’s how I like to think of it, first started; I preferred to wear the spectral leg on the outside.  It was a clear indication of what was not right with me.  I wasn’t using the cane at that time.  I nearly sacrificed a favorite pair of black leather pants because the spectral leg could not be seen.  Now, because of the cane, I try to keep it hidden when I wear pants.  But  Sunday, I wasn’t even going to get out of the car. Tom was upset that it was visible.  I am upset that I finally fit into the jeans, I don’t want to wear them in public.

Instead of representing the freedom they once did , they now represent the limits I face.  It’s time to give them up and move on.

Out of Work Summers – Beach and Bleach

Posted on by tresswann

I am writing this from my laptop in the backyard.  I am sitting in what we call our screen house so I am protected from the sun.  There is a delightful breeze.  I have been unemployed for 9 months; second longest period so far.

In periods past, I would be just returning from the beach.  Due to this condition that has been closed to me for now.  I can no longer tolerate the heat nor can I walk on the beach.  I used to find solace, peace and joy at the beach especially when I was out of work.

I started my unemployment  career in the garment district.  I went in and out.  Then I ended up at a major company and wa there for almost 9 years.  I loved what I did and was excellent at it.  The 90’s happened as did a merger.  I was treated in a textbook/case study manner.  I stopped getting invited to meetings.  My work was taken away from me.  I was let go with severance.  It was the end of May.  All my associates were let go after me.  I was grateful for this as it angered me and I would have been fired.  They let go a woman who had been there for almost 20 years.  She was paid less than what I used to expense for lunch and dinners weekly.  Ah, that expense account.  For nearly 10 more years, I didn’t make as much as my expense account.  I’d clear out my files and cry as I shredded the expense stubs that were larger than my current pay stubs.

When I lost that job (and I hate that term, I didn’t lose it, it was taken away from me) I was depleted.  I headed to the beach and spent so much time there my naturally dark hair bleached.  I also decided that I was going into business for myself.  I wanted a company that would never treat people like my low paid friend that way.  I have a great sense of what  is going to be popular fashion-wise and I had made connections literally all over the world.  I reached out to my network and received enormous support. What can I say? Great idea.  Wrong time.  Poor capitalization.  I showed merchandise to Brooks Brothers and was told it was too forward; try Paul Stuart. I had an existing relationship with Paul Stuart and was told it was too conservative; try Brooks Brothers.

I became seriously depressed and got married.  Bad, bad choice.  It was not convenient.  I made more money on unemployment than he did working.

I fought my way out and up and ended up part time at a financial services firm.  I was over a thousand hours and forced  to take nine weeks unpaid leave.  It was summer.  I hit the beach and the want ads.  Again, I bleached out.  I had an interview with a company that wanted someone who could do what had been done for my fashion employer.  Uh, that was me.  I came up with a portfolio of designs to show them, arguing the whole time with the late Joebe who wanted to impose his personal taste on the process.  I arrived at the interview deeply tanned from my beach time.  The interviewer took one look at me and said “Obviously, you are not seriously interested in working.”  He wouldn’t even look at the hours of work I had put in.

Fast forward, that  company made me permanent but I left after almost 7 years for the monolithic Bank. Finally, after 10 years was making a little bit more than those old expense account checks.   After 4 years, I was let go.  Back to the beach and back to bleaching out again.  And I married, again!  But this time I knew I would be working in the fall. It was a dream job at a major retailer making more than I had.  I also started moonlighting at the Bank.  What could go wrong?  Chapter 11 at the end of May.  For the 2nd time in two years, I was off for the summer.  Yup, beach and bleach.

Except for the first time at the end, I  was optimistic.  I had ideas and possibilities.

This time, I was let go in the fall after a total of 15 years.  I didn’t have the same hurt I had had with fashion.  My associations were different.  I was optimistic and calm.  I didn’t want to do my own business as I had done previously but actively look for work.

What’s different?  The Internet and my scads of experience.  Even if I was able, no beach and bleach for me.   I spend hours daily sometimes including the weekends looking for a job.  Today is one of the only days I am taking a “break” and writing.  What’s also different this time is that I am getting really good interviews.  What’s the problem?  Well, I am mature.  Experience costs money.  “We want you do but with someone out of college.”  Good luck to ya on that.  Didn’t you hear “You get what you pay for.”  And then, the elephant in the room.  My mobility.  There is nothing wrong with my brain.  I participate in research studies and I can remember the answers I missed the previous year!

It’s summer.  I HATE this condition.  It is taking so much away from me:  no beach and bleach, no walking, no gardening, no JOB!!  I need to channel that sense of optimism and possibility again.  I need to recharge without the beach.