Uncommon Women and Others and Being Amazing

The first time I saw Uncommon Women and Others, I was completely electrified.  I saw it on PBS, shortly after I graduated college and just a few years after it had been written.  I watched it upstairs at my parents in what we called the office on their black and white TV.  We were always behind the times that way. It shocks me now to see old programs in color when  I have vivid recollections of them in black and white.  Uncommon Women resonated with me for several reasons.  Even though it was set at a Seven Sisters school and I went to a sub Ivy, I recognized that type of young woman.  There were lots at Goucher and some even at Hopkins where I attended.  In the play, the women are looking back at their lives from the vantage point of 30.  They had promised when they were 30, they were going to be amazing.  I was still in my 20’s and living with my parents.  I needed to believe that thirty could and would be amazing.

Watch this play and you will see early performances by Meryl Streep, Jill Eikenberry and Swoosie Kurtz.  Amazing.  It also confirmed my longing for strong, female friendships.  I had gone to what was essentially an all boys school.  I had rebelled against my mother who saw me at Vassar or Radcliffe.  I did want Bennington but she vetoed that because – shock- a women’s college with a woman president!  In many ways, she was a product of her era.

I did develop those strong female friendships along the way.  I am still in contact with my college roommate over 40 years later.  I have reconnected with some of the girls of my youth.  I have other women I have picked up along the way that have given me an incredible safety net, strength, support and love.  But sitting watching that black and white TV, I knew none of that.

I remember thinking as I watched that I wish there was a way to keep this, like a book, so I could take it out and look at it whenever I wanted.  A few years passed.  It came back on PBS.  By then, I was over 30 with a color television of my own and a VCR to record it.  The world was moving.  I wasn’t amazing but I was doing alright.  I was making crap money; had a glamorous job; and was not working up to my potential.  I was, however, known as a person with friends.  I had a therapist at that time who told me I defined myself as a friend.  I did not think it was a bad thing.

 

I, like the women in the play, began to believe at 40, I would be amazing.  Forty came and went and I was so not amazing.  I no longer had the glamorous job and was back with my parents.  Volunteering saved me.  I was lucky to have a volunteer position that involved raising money to support and advance women’s rights.  New York, my state, was never ever going to be able to compete against California.  There is just too much money there.  However, Uncommon Women and Others continued to resonate with me.  I used it in my stump speech all the time.  I believed that as a state, we could raise our fundraising and be amazing.  We, as women, could and would be amazing. Was this uncommon?

 

Time advanced.  I was ecstatic to discover Uncommon Women and Others on DVD.  I bought a handful and gave them to my important women friends one Christmas.  Technology was amazing.

 

Wendy Wasserstein wrote other, wonderful powerful plays about women.  I have been blessed to be able to see them.  These plays grew along with me. Women of a certain age will relate to The Heidi Chronicles. She became an iconic voice for women. Wendy Wasserstein was truly amazing and she died.

I passed 50 and was still waiting to be amazing, then 60.  I still aspire to be amazing.  As the years have passed, my concept of amazing has changed.  In my 20’s, I wanted the job, the car, the man, the friends.  It didn’t change much for my 30’s.  I did have all of that but somehow it wasn’t amazing enough.  My 40’s found me rebuilding – a broken marriage,  broken relationships, a different career, better friends and moments to be amazing.  I am very proud of the work I did for that organization and hoped I have helped other women find their “amazing”. 50’s – almost there.  I had created a sort of life that became blown up by disease.  I fought and continue to fight.  60? Still standing and literally that is remarkable and amazing.  I was filled with more fortitude than I thought possible.

 

Amazing changes through time and space.  Can I say now when I reach 70, I am going to be amazing?  Seventy sounds like a foreign country, unexplored and unimagined but closer.  I thought when I graduated college that I would go for my PhD in my 60’s.  Well, that ship sailed.  I still have the curiosity and the interest.  However, time and money have become finite.  I consider myself amazing sometimes because I have been able to find and hold uncommon women and “others” in my life.  I never could have imagined that or its importance when I first experienced the play. Sometimes, when I consider what life has thrown at me, I may be amazing.  I still keep on trying.  I try to walk.  I miss the feeling of speed and air when I am walking.  Sometimes, I miss working yet still I tick on. What makes us uncommon women and what makes us amazing?  I consider my uncommon women friends amazing.  Each in her own way is unique yet the same.  They are intelligent, curious, courageous, inspiring.  They lead.  They share.  They never stop changing.  They are principled.  They have style and substance whether they acknowledge it or not. I have fulfilled one of my wishes from when I first saw “Uncommon Women and Others”, I have those close female friends for decades, uncommon women each and everyone of them, and that is AMAZING!

New Neurologist Visit

I adore my neurologist, truly.  I have been involved with her since the  beginning.  She was a fellow observing my initial doctor.  When she established her practice, I jumped at the chance.  She explained Zumba and WII to the original doctor.  I have been with her since 2008.  Her philosophy meshed with mine – sometimes a fall is just a fall.  I have always fallen every time I am upset since I was young.  I spent most of my senior year in college on the ground.  The upside is I know how to fall.  I have been told, as much as something like this is possible, that I do it gracefully.  She said if I wanted to wear kitten heels it was fine as long as it was safe.  Personally, she didn’t understand why anyone would want to wear heels.  We email each other.  She practices in a multiple sclerosis institute.  This has given me access to cutting edge research and care.  We agree to disagree on what is inevitable.  In recent years, she has been saying I need to recognize this.  Inevitable is a word I disagree with.  Maybe I am in denial, however, inevitable implies defeat.  Defeat cannot be an option for me.

The Institute is located in NYC and I usually go by train.   I have weakened so that isn’t really possible.  I would have to take car service for hundreds of dollars.  Well, I really haven’t worked in three years so that is an issue.  I did try and get transportation through health insurance.  I jumped through hoops.  I have had my primary care doctor send one form three separate times.  My neurologist is considered  out of area.  However, continuity of care is not considered a valid reason.  Really?!  I have a chronic illness and was being seen by a renown  doctor for 10 years in an Institute dedicated to my condition.  I participate in research there.  This was not good enough.

I found there was an Institute, driveable from where I live.  Problem – this is where I had my second opinion years ago.  It was horrible.  The doctor literally forgot I was there.  When she saw me, she asked what I expected of her.  An f*ng miracle?  At the end when I asked what I could do and was told to live a good life.  I voted with my feet.  It would have been closer and easier. She was an alum of my uni.  Even though I prayed when I was 18 to never get sick so I would never have to deal with any of them, I tend to pick alumni.  She exemplified all the reasons why not.

So, I was faced with returning.  When I rang, I was specific that I did not want HER! Surprised! They made it with someone else.

It started off well.  I was taken more or less on time. There was even an apology for the 10 minute delay.  None had been offered at the time of the hours long wait when that occurred. It went downhill from there.  One of the things my husband and I have been concerned about has beenmy increasing pain.  The medical herb is just numbing it.  I even had to fill out a questionnaire about my levels of pain.  Nothing!  And we asked more than once during the course of the visit.  The closest we came was a suggestion to try different combinations of the medical marijuana.

I brought all three spectral legs, including Frankie.  I indicated the problems with Frankie.  Again, nothing! Onto the chariot aka the rollator.  I self-prescribed and bought mine on Amazon for $25.  I need something different.  “Your physical therapist can do that for you.”  Really? And PT?  She wrote me a scrip for her office, over half an hour away.  Tone deaf!  Diet?  Exercise?  No comment. Call me dissatisfied and back  to the drawing board.

Oh and let us not forget the Ocrevus.  I am scheduled for October 4 in NYC.    Yes, I can get it with her but my husband probably can’t be with me and I’ll be in a circle with 5 other people.  We want a hospital and a semi-private setting.

The only thing I did get is an increase in my Baclofen.  More on that in another blog.

She didn’t even ask me for a return date.  Guess the feeling was mutual.

I feel defeated as I don’t think I’ll be able to go back to my doctor.  So, another stressor, how do I find the care I need?

Heidi, the Super Bowl, Secret Garden, Pollyanna and Me

The SuperBowl has been on my mind as it has recently passed.  My family weren’t football fans but totally baseball mad.  Tom watched it in full for the first time in decades.  Anyway, my mind was just drifting along and I remembered “Heidi loves the Super Bowl”.  Yes, you have to be of a certain age to remember and appreciate that bumper/sticker joke.  I was one of the children breathlessly awaiting the broadcast of Heidi.  I don’t recall the exact details as I was a child and football not a religion practiced in my home, but it was at some critical juncture in the game, that the network cut over to Heidi. It must have been around 7 o’clock and of course, on a Sunday evening I was one of those children who adored Heidi.  It was one of my favorite childhood books.  I would not have been allowed to stay up late on a school night.

Heidi

Heidi’s story, as filtered through memory – Heidi is a miserable child and sent to live with her grumpy, mean Grandfather in the Alps.  He forces her to go outside, play,  herd goats and get apples in her cheeks.  Somehow, she encounters Klara, a young sick girl, who reading between the lines, is not expected to last long.  Klara can’t walk either.  Heidi enlists Grandfather to do for Klara what he has done for her.  She drinks  goat milk from the herd. And with exercise, good air and clean food, Klara is cured and can walk.  More or less.  It’s been decades.  I  shall have to gimp upstairs to my childhood shelf and have a read.

secret garden

One of my other favorite books as a child and yes, just a plain favorite is The Secret Garden.  Again, the condensed via me version:  Mary is a miserable, spoiled brat baby and sickly.  She is sent to live with her uncle in England.  Again good air, good food and a new friend lead to a change in her.  She discovers her cousin Colin hidden away – bedridden, can’t walk, not expected to live.  Good air and food plus exercise and he walks again.

My parents used to tease and call me Pollyanna  or Rebecca of Sunnybrook Farm.  No recollection  of Rebecca but a memory of the film Pollyanna with Hayley Mills.  I did want to be Hayley Mills.  My recollection is that Pollyanna is a positive child, gets ill, loses her ability to walk; in this case she doesn’t get to walk again but everyone loves her more.  No memory of Rebecca except that she was cheery.

So, where is this leading?  I have been steadily deteriorating over the last few months.  I have attributed this to bad eating and lack of activity.  The last week has been particularly brutal.  My doctors have pooh-poohed me.  It’s the nature of the disease.  It’s supposed to progress and it is.  There is no cure at this time and it is inevitable.  From day one, I have never bought into that.  I do believe that food and notjust “eat healthy” impacts walking.  Not walking and being as active as I used to be takes its toll.  It’s a vicious cycle – less activity, more fatigue, more stress, less activity….   Eating needs to be tweaked and healthy is relative.  I am still sorting it out,  But do not, do not tell a woman who has metabolized Heidi and The Secret Garden into her DNA that she will not walk again and wheelchairs and scooters are inevitable.  Obviously, you have not read what I did as a child.

Here’s to Colin, Klara and me, perpetually Pollyanna and proud of it.

Doctor Visit, the Spectral Leg and the Motivation of Ugly

Another doctor’s visit – this one for rehabilitation.  Here’s a funny to start. Tom’s dad had to go into physical rehab a few years ago in FL and when he rang to check on him,  they connected him with drug and alcohol rehab. So, mine is for physical evaluation.  We were waffling about going as it was close to rush hour in NYC bound traffic and over 30 miles from the house.

One of the challenges confronting dealing with this condition is that the onus is on the patient to discover and coordinate care and options.

Initially, my neurologist never suggested a brace.  I kept on falling.  However, I am used to falling and as a rule do what I have been told are very graceful ones.  Sometimes, I just crumple.  I was going through a stage where I was falling a lot and heavily on my knees. Our solution:  Harbor Freight for kneepads.  Uh, ugly and unwieldly so a friend referred me to an orthopedist she had seen for carpal tunnel.  My knees hurt and I thought I had done damage.  He wrote a scrip for the first brace.  It was filled by a little old man with hair plugs.  He told me I was lucky as I would soon have them on both my arms and legs.  When I went for the fitting, I swore he used a hair dryer to mold it to my leg.  I threw it in the trunk of the car and basically didn’t use it for about a year.  It was white plastic and covered my calf.  I used to crack up my physical therapist by saying it was a great shoe horn and helped me lift my leg into and out of the car.  I mainly used it as a visual cue and for some support walking and climbing stairs in Grand Central, Time Square and Penn Station.  I didn’t wear it in the office but had nice flats and kitten heels.  The spectral leg, as I prefer to call it, could only be worn with lace up shoes.  I am known for not wearing sneakers.  I was brought up to believe that they are acceptable for the gym, only.  I was never one of those women you would see walking in Manhattan in a suit and sneakers.

When things finally deteriorated and I started wearing the spectral leg  full time, the ugly tie shoes weren’t happening.  I spoke to the neurologist who gave me a scrip for a new one.  This one was to go completely under my foot and be less obtrusive than the original.  It would let me  wear different shoes, too.  My neurologist has always understood that looking good is important in helping me feel good.

The new spectral leg did not have shoe horn capabilities.  I can’t usually put it on myself.  As is my usual habit, I really didn’t use it for months.  Big problem when I did, sometimes, after just an hour my foot started to burn.  Other times, I could go for a few hours.  The pain was incredible.  Very problematic when I had to drive as my nerves would then cause the foot to jerk.  The GP said it was in my mind and I should talk to the neurologist.  The neurologist looked  at me as if I were crazy and said why would it be neurologic.  Finally, finally an ugly blood blister showed.  I’ll spare you the disgusting pictures.

New insurance, podiatrist.  He says it’s the spectral leg.

Back to neurologist.  I show her the pix.  She recommends a physical rehab doctor.  Ha, my insurance doesn’t cover him.  We go on a quest to find someone who is on my insurance and can treat my issue.  As this is going on, my walking and mobility are deteriorating.  I am hyperextending  my leg.  When I walk, I look sort of like Quasimodo and Igor.

We find a doctor, who is covered, who works with feet, is local and has available appointments.  He was honest enough to say he can’t help me.  However, his take is that the condition causes my nerves to flare and offers me drugs! And a referral to today’s doctor.

This is the first time, since the whole thing started that someone really evaluated the way I walk and move.  How come this took nearly 10 years.  No looking back but maybe, just maybe I could be in a different place now?

I explained how I don’t wear spectral leg in house.  He admired my seasonal cane.  We discussed how my neurologist and physical therapist suggested a walker.  He concurs but calls it a rollator,  He suggests it can be available in pink with a seat.  Tom quickly vetoes him on that before I can.

Next, yes a new spectral leg, an uglier one.  It will stabilize my knee and hips.  Some of me is still strong but my abductors are very weak.  He said watching me walk with my hyper extended knee hurt him.  If I don’t take care of it, I can become arthritic and the knee much worse.  I get that.  This new spectral leg is going to have major knee support and more of a back.  He says my little booties won’t work.  I’ll need sneakers or orthopedic shoes. NOT!! NOT!!  I will not do ugly.  He did suggest a shoe store and those shoes are UGLY  and a  few hundred dollars.

He does agree physical therapy and the gym are very important and will help.  Of course, insurance won’t  cover enough sessions. And I have to wear it from when I wake up.  I almot never wear it in the house. And almost never use a cane, either.

I am beyond upset.  I haven’t exercised enough.  Vicious cycle  – I can’t go to the gym so I get weaker.

This doctor, as does my neurologist, believes I can regain and retain muscle.  So Plan B – back to gym as soon as I can with existing walker, seasonal cane and spectral leg.  DO NOT THROW OUT existing ugly shoes.  DO become fanatic about clean eating/auto-immune diet.  This is the kick in the pants I need to commit.  Ugly inspires

Perceptions, Expectations and Mammos

It’s  odd the way the brain works .

I get my mammogram religiously every year.  I had my very first one when I wasn’t working and went to a mobile van parked at Pathmark.  This year I have been running late on everything.  I saw the gynecologist in June.  I usually have mammo midMarch.  Due to my unemployment, I can no longer go to the lab I have been going to for about 20 years. I have been delaying, thinking I’ll get a job and different insurance  .  I had a kick in the butt because I have to go off this medical plan and go to another for two months.  Okay, I am going to name names.  When I was in high school, my grandmother had to go to Zwanger for radiation.  At that time, it was Dr. Zwanger and not the megalith it evolved into.  My grandmother hated him which was an unusual state for her.  As a result, I have carried a bias against Zwanger.   I have had MRIs and xrays there because there was no other option.  It’s been alright. Now, as I said, I have been going to Nassau Radiologic for about 20 years.   At one time, they were just about the only game in town.  You literally had to schedule 4- 6 months in advance.

After you checked in at the main window, you waited to be called in.  Then someone came took you back and you went into a pretty bare changing room.  It had louvred doors that were not full, a wood bench and mirror, a collection of plastic bags and two trash receptacles, one for the used gowns.  Let’s use the word gown lightly. It was a cape/poncho.  I am personally comfortable with my body and have annoyed my acupuncturist and the odd gynecologist by not really using the gown.  Naked is naked, right?  Well, in this poncho/cape thing which you always had to take off anyway, I felt the “girls” were always hanging out anyway.  It used to be like a scene from a demented refugee movie.  There were all these half-dressed, frightened women (and don’t say you are not) sitting around with plastic bags waiting to be called in.  The actual technicians were always, always great.  Until three years ago, you also had to put the thing back on, carry your plastic bag out and wait to be told if you needed additional shots.  I have dense “girls”.  I picture them flopping around and going “D’uhh?!”  Usually, I had to have additional but still…

They changed three years or so back.  Instead of going to the main window, there was a little desk next to the elevator and this woman would bark at you.  Look, if you’ve been doing the same thing annually at minimum ( many of us have had more frequent visits)  your feet just do the walking.  “Stop!  Didn’t I tell you to come here!”  What also changed was waiting after the first  pictures.  You could leave the refugee area and wait at home for the all clear or have to go back in and repeat.

Yesterday at Zwanger, a real changing room and a real full length robe with a tie, one of those new reusable shopping bags and a real hamper!  The whole experience was nicer if you can describe a mammo as nice.  No waiting and I received a notification today that the “dense” girls are OK but still dense.

So here we go.  This place is less than 3 miles from my  house.  Nassau is nearly 30! I could have been going here for a decade.  I let old perceptions and expectations limit me.  My perceptions and expectations have also changed.   I need to think and see what else can and should.

And get that mammo!