The Family Disease

There is a genetic disease in my maternal line called Adrenoleukedystrophy (also referred to as X-ALD).  It is an X-linked disorder that has killed 3 of my male first cousins, at least one of my uncles, and two of my great uncles.   The movie “Lorenzo’s Oil” is about a boy who had ALD.  Lorenzo’s Oil is an important treatment option; however, there is no cure.  Family lore instructed us that females were the carriers and males were the victims of this disease, but it turns out to be more complicated than that.

The disease presents in affected males in one of two ways:

ALD presents in early childhood and is the most severe form.  Affected children usually develop normally until they are about 7 years old.  If untreated before a certain age, the boy will rapidly degenerate to a vegetative state, before which he can go blind and deaf.  My Mom’s youngest brother died from the childhood variant in 1947 at the age of 8.  A cousin of mine died at age 13 in 1991. 

The other variant, AMN (Adrenomyeloneuropathy) usually develops in early adulthood, although it can develop later in life.  It eventually kills the victim, but not before they loose the use of their lower limbs. Another first cousin of mine died at 57 years of age in 2005. Two other male cousins died from AMN in their 20’s. 

My maternal grandparents, William and Veronica, were married in 1910.  Two of Veronica’s brothers seem to have died of ALD, but the disease was not understood back then.  Unbeknownst to her, Grandma was a carrier.  Between 1912 and 1939 my grandparents had 13 children, 5 boys and 8 girls.  The odds are that 50% of these children either had the disease or were carriers. To date, we can identify 3 of their daughters as being carriers because they had male descendants who developed one of the two variants of the disease.  My grandparents also had at least one son who died of ALD (Jerry).  It is likely that two other sons (Edward and Wilfred) had ALD, but they died in early childhood around the time of WWI, and the disease was not understood at that time.  Not every daughter became a carrier, and not every son got the disease.  It was a poorly understood crapshoot.  My grandparents had 36 grandchildren. Since we now know that the children of a carrier mother have a 50/50 chance of getting the disease, and making the very broad assumption that Edward and Wilfred had ALD, it is still possible that one more of their children carried the gene. This is why it is so important that all my living aunts, and my cousins whose mothers and fathers have died, get tested. 

The gene for ALD can act like a terrorist sleeper cell, hiding for years before revealing itself.  For example, my Aunt Rita died in 1958 not realizing she was a carrier.  She had three children, a boy who died at 4 months, and two daughters who are still living.  Both daughters had children.  K had a son and two daughters.  N had two sons.  Since none of Aunt Rita’s 3 grandsons developed ALD, no one ever suspected Aunt Rita was a carrier.  However, in 2013, 55 years after she died (!) and 3 generations out, one of her great grandsons, A, was diagnosed at 8 years old.  Rita had a daughter, K, who had a daughter, KY, who is A’s mother.  It turns out Rita, K, and KY were all carriers, but it hid in their genes until A was born.  

My mother underwent genetic testing in the 1990’s, after a nephew and 2 grandnephews died from this disease.  The results were negative.  Now there is more up-to-date information about the disease, including the fact that the genetic test available in the 1990’s was only 80% accurate. With some effort I was able to convince Mom’s doctor to get her tested again with the new (100% accurate) genetic test.   The trick was to convince the doctor to state it was “medically necessary” to conduct the genetic tests so that insurance would pay for it.  He was reluctant.  He actually said,  “if none of her sons had it then she probably doesn’t carry the gene”…  That is a genetically naive statement, considering my mother had 7 children and 4 of them could be female carriers.   "Probably" does not cut it when you are dealing with the lives of your descendants.  In addition, two of my three brothers died before they were 40 years old.  Remember that one of my cousins did not even develop AMN until he was in his 40s, and some males carry the gene but do not develop symptoms.  Plus, my mother is 88 years old and living in a nursing home suffering the advanced stages of Parkinson’s Disease – one of the diseases that can mimic ALD symptoms.  It seemed to me at least medically necessary to make sure she was not being treated for a disease she did not have.  In fact it is medically necessary to conduct this test simply to determine if any of her descendants are at risk.  I appealed to him on the phone, and sent him tons of information on ALD as well as a long genealogy showing how often it has shown up in our line.  Eventually he came around, contacted the experts at Johns Hopkins and ordered the tests.  I appreciate the fact that he listened and changed his mind when faced with the facts. 

The genetic testing was administered through Johns Hopkins University Hospital in Baltimore. Out-of-pocket it cost a little over $500 because insurance covered most of it.  Once again, her results came back negative.  We are so lucky, and considering the randomness of genetics that is all it can be: cold, impersonal luck.   Good luck or bad luck.  

The information and understanding we had for this disease was limited prior to A’s diagnosis in 2013; however, that limited understanding was simple and easy to ignore.  We used to think that only daughters were carriers and only males got the disease.  So if none of your brothers developed the disease it was easy to make the assumption that your family was safe, until A got it. 

A’s mother, KY, wanted the facts, the figures, and the science in order to help her son.  What she found was disturbing.  Apparently, both men and women can be carriers, not just women.  If a man has the gene then there is 100% chance that he will pass the gene on to his daughters and zero chance he would pass it on to his sons.   If a woman is a carrier then all her children (male and female) have a 50% chance of inheriting the gene.  In addition, some male carriers NEVER show any symptoms but still pass the gene on to their daughters, AND some female carriers show symptoms of AMN as they age.  They can be misdiagnosed with diseases like Parkinson’s or MS.  So unless modern genetic testing is done on the oldest living relative in each of Grandma’s children’s families, we will not know if we carry the gene into future generations or not.  Most of my aunts and uncles in this genealogical line have already passed away.   Unfortunately, that means many of my first cousins still need to be genetically tested, except the sons of sons of Grandma… because although a female carrier can pass it on to both her sons and daughters, a male carrier can only pass it on to his daughters. Are your eyes crossing about now?  Maybe this will help:

     Males:

• Sons of female carriers have a 50/50 chance of inheriting the gene
• The sons of male carriers/victims are always safe.   
• The daughters of male carriers/victims will definitely inherit the gene and are always carriers
• Here is the kicker:  Some male carriers do not ever display signs of having the disease, but they still have it and they have 100% chance of passing the gene on to their daughters
  
  Females:

• The sons and daughters of female carriers have a 50% chance of carrying the gene
• Almost 50% of  female carriers develop some AMN related symptoms as they age

A female carrier would pass the gene on to 50% of her children.   Genetics is a crap shoot.  It could totally skip her sons, but still be inherited by her daughters – giving the illusion in that generation of the family being ALD free.  If the carrier daughter only has daughters, her daughters have a 50% chance and would pass it on to 50% of their children, etc.   This is exactly how A developed ALD 55 years and 3 generations after his great-grandmother died.

I can trace the genealogy of this disease back to a specific male carrier/victim, my great-great grandfather, Tony Mueller.  He would have inherited this disease from his mother.  Tony Mueller was born in 1841 and died of AMN at the age of 39 in 1870.  He was one of 6 children, so he would not have been the only child who passed this gene down.  Odds are that at least 2 more of their children were either carriers or carrier/victims.  Anton had 2 daughters and a son with his wife, Susanna.  Their son was, of course, genetically exempt.  One daughter became a nun. The third child, my Great Grandmother Catherine, married Frank.  Catherine was a carrier. Catherine and Frank had 7 children.  Two of their sons died of what the family believes to have been AMN, one at 39 years old and the other at 19.  Her daughter Veronica (my grandmother) was a carrier.  Another son died at age 15 from a skull fracture.  A second daughter died at age 2 from unknown reasons.  Catherine and Frank’s 2 remaining sons seem not to have inherited the disease.  

It is so hard to wrap one’s mind around all this, but these are the facts.  This is the uncomfortable and complex truth.  I wish it were not true.  I wish it were not so hard to understand or accept.

KY and her mother reached out to every cousin and aunt who still lived, either directly or through other cousins.  She sent a letter outlining the facts.  She urged everyone to make sure the oldest living relative gets tested through the two places in the U.S. who do this specialized genetic test.  She explained that it was more complicated than we previously thought, i.e., almost no one is safe unless the genetic testing has been done on the oldest surviving person in their direct line.

In truth, the mathematical odds are clear.  Out of 13 children, we know for sure that 4 carried the gene for ALD.  It is possible that two more sons had it, but we can never know for sure if they did.  There remains a 50% possibility at least one more child of William and Veronica inherited that gene.  Hopefully the other 50% won out and everyone else is safe, but we cannot live on hope.  The stakes are too high.  

What testing needs to be done?
The following is paraphrased from recent updates written by KY:  

In 2013, the lab tested A's ABCD1 gene to see the exact genetic change/problem that resulted in his diagnosis.  He has a deletion of this gene so testing in other family members must be done by the MLPA - a deletion testing methodology.  There are two labs in the USA that do deletion testing on this gene:  1) John Hopkins DNA Diagnostic Lab in Baltimore, Maryland and 2) Emory Genetics Lab in Atlanta, Georgia.   A's test was done at John's Hopkins; ideally further family testing should be done in the same lab so they will have A's results as a reference.

In November 2013, A underwent a bone marrow transplant at the U. of Minnesota’s Amplatz Children’s Hospital, which is at the forefront of fighting this terrible disease.  It seems to have been successful in stopping further damage.  However, his hearing is completely and permanently gone and he is learning American Sign Language.  Unfortunately, he has also suffered significant vision loss.  The current medications he takes will hopefully stop more damage from occurring, but they cannot correct any damage that occurred prior to the bone marrow transplant.  This is why it is so important to know if our children are potential victims.  Otherwise, by the time the disease presents, it is too late to stop the damage.  In addition, he will remain on hydrocortisone, a steroid, for adrenal insufficiency for the rest of his life.  He is 9 years old.  California and New York State have recently decided to include ALD testing with the routine screening done on all newborns.  Let us hope other states follow suit.

Wrapping It All Up

You should see me wrapping Christmas presents this year.  I love Christmas and I really like buying presents.  However, I am SO over the present wrapping thing.  I distinctly remember the great joy I derived from wrapping Christmas presents when I was a teenager.  I always volunteered to wrap the family presents for my Mom, to help her out at a busy time of the year.  I went to great lengths to make each present a work of art.  I made bows with wide ribbon.  I added festive decorations.  They were beautiful.  It was fun.  Unfortunately as I got older, each year I became a little less creative and a little less thrilled with the process.  Now I do not even put bows on the presents.  Seriously.  No bows.  They are just another expense and make for more trash fouling up the environment.  Bah, humbug.  Away with all bows.

I buy the cheapest wrapping paper I can find and I wrap those suckers as fast as I can.  Today I was wrapping like a fiend, trying to get every present I currently have wrapped and ready for the big day.   Because my wrapping paper is so cheap and crappy, when I pull the sides together to seal the package, the paper often rips open at the corners.  HA!  That does not bother the likes of me!  I laugh (ho, ho, ho) as I apply Scotch magic tape and patch up the corners.  I am NOT gonna re-wrap the damn present because of a little, wussy rip.  The grandkids are going to tear open the package wrapping anyway. They will not notice. And if they do, it will be a pleasant Grandma memory they can share with their own kids someday - along the lines of "Your Great Grandma was SO cheap, she wouldn't even ...{insert your own memory}.  I own it.  I enjoy myself.  I am a rebel at heart.

Hey, I think I got this from my own sweet Grandma.  She was a sweet transplanted mountain woman from the hills of Tennessee.  Do not call her a hillbilly, 'cause then I will have to hurt you.  She was, without a doubt, the best person I ever met.  When we moved away from Northern Indiana for a few years in my childhood, she would send us big Christmas packages filled with lots of presents.   None of those presents had bows.  The bows would have just gotten smooshed in the tightly packed box; however, she would not use tags, either.  She would simply write the name of the kid on the wrapping paper.  I wish I would have thought of that, because I also resent buying the stupid tags.  Sometimes you just have to follow your heart and trust your own instincts.  Do not let Hallmark run your life. 

Real Life

Have you ever heard a retired person complain about how busy they are and how they do not know how they ever managed work and homelife when they had a full time job?  Yeah, the young me was always rolling my eyes to the back of my head when I heard that.  When you ARE balancing work/family/relationship/home it is too cruel to hear a non-working person complain about being busy.  Imagine my surprise to discover when you stop working "real life" moves in to fill the void.  Still, real life beats the hell out of working for a living.  I am not gonna lie.

I sincerely do not know how I managed to conduct my personal life while working outside the home for 37 years.  In fact, I think maybe I did not have a personal life then.  Something had to go to make time for work.  Working outside the home is all consuming.  The workplace is unforgiving, demanding, and pretty much devours the majority of your daylight hours.  I remember coming home from work and plopping myself on the couch just staring into space, night after night.  "Shaken, not stirred" is how I felt.  It inspired me to start making martinis.  At least that got me up off the couch. 

The last few years of working full-time I was unable to read a book because I was too stressed to focus on a page of text.  Towards the end of my work years I rarely read an email word for word, skimming each one for the punchlines in order to get through them all in a timely fashion.  Weekends were spent cleaning, cooking, shopping, catching up with friends and family.  I guess I was lucky that we did not live near our grandkids then, because when would I have seen them?  Would I have really wanted to add babysitting to that mix?  There was never anytime for myself then.   I ached for retirement so that I could relax and do all those things one is never able to accomplish on a measly weekend.

I went through the working mother routine, too - the years when raising children was supposed to be your top priority.  And I only had one child. When do working mothers sleep? Actually, when they do lay down to sleep they are unable to relax because they are wracked with guilt for not spending enough time with their kids.  But I had my kid when I was 20.  I had an abundance of energy back then.  I felt like I could do it all. What about the mothers who just start having children at 40?  How do they keep from jumping off a cliff? 

Aging is the issue.  I simply do not have the energy I once had.  My mind is going 100 miles per hour, but my body is meandering along at 20 mph. When I was young it was all a game, and I reveled in the challenge.  Now the thought of being challenged makes me want to throw up.  I want time. Lots of time. All to myself.  

Now I Hate Birthdays

I have lost 10 pounds since I started counting calories, 7 weeks ago.  I downloaded the MyPlate app from livestrong.com.  Why yes, I AM tired of entering all my food and exercise every day, thanks for asking.  But hey – it works so I am forcing myself to continue.  I must confess there have been a couple of days where I overate and refused to go in and finish posting for the day because I did not want to face the music (or in this case, the numbers).   I always started up again the next day, though.  So far, so good. However, today is Thanksgiving and I am terrified.  I think I will take the day off from counting.  There is no way I am going to behave today.  Especially now that my friend JE sent me her sweet potato recipe and I have discovered how much butter is in it.  No wonder it tastes so good.

As long as I exercise I stay motivated.  A couple days this week it rained like crazy, so I could not go for my beloved bike ride.  I was in a panic.  I have exercised every day so far on this diet and not just because I love to ride my bike, even though I do.  I ride to eat!!!  There is no *%#@! way I can stay within their assigned calorie count without earning extra calories by exercising.  Usually when it rains in Florida it is only for part of a day.  It is very rare that you get a whole day of bad weather with steady rain.  The other day it poured all day.  We got so much rain (6 inches) that we had to drain the pool by a couple of inches so it did not overflow.  It was torrential.  It was bleak.  I was very afraid for my diet.  I do not know about you, but when I am stuck in the house for an entire overcast, cold, and rainy day all I think about it food.  I ended up dancing like a crazy woman, alone in the living room, for as long as I could and then did some hand weights. That is how weird I have become.  T shut himself up in his office and did not come out until I turned the music off and he figured it was safe to emerge.  I appreciated the privacy.  It is hard to get privacy when you and your spouse retire at the same time.  Luckily we have 3 bedrooms and we both took rooms for an office.  I am so thankful to whoever invented doors.

I experienced a real blow on my recent birthday.  The damn app automatically reduced my daily calorie total by about 50 calories based on going from age 62 to 63.  Sheesh, as if it wasn’t bad enough aging and dieting, now I am being punished for it.  Cruel and unusual punishment!  I may go in and lie about my age.  Or keep changing the date of my birthday further and further into the future.  Whatever it takes.  It is not that I mind getting older, it is the calories that count.

Take My Wife, Please!

As I hinted in a previous post, I feel kind of sorry for men who marry young women.  They do not realize at the time, but they actually have no idea who they are going to end up with.  With some notable exceptions, most women do not come in to their own until middle age, when all hell breaks lose.  Sometimes the sweet, passive young thing you married becomes a mouthy, strongly opinionated woman in her 40's.  It happens!

I am uncomfortably aware this is a gross stereotype.  Still, I am going to follow this thought and see where it takes me.  I am not afraid to make a boneheaded argument and later discover I was all wrong.  It's kinda fun and it gives me something to do.

How many marriages end because the man no longer recognizes the woman he married, or the woman feels she has outgrown the man?  The contract has been broken, the promises have not been kept.  The husband may feel cheated and deceived when he finds out his wife has her own opinions and they do not jive with his own.  Imagine how heartbreaking it must be for a man to discover his wife cannot stand the things about him at 50 that she loved at 20?   That has got to be harsh!  You have my sympathy, gentlemen.

Most boys are allowed, encouraged even, to be “themselves.”  Boys are admired for having strong personalities.  Hey, they admire THEMSELVES for having strong personalities and they are not shy about revealing who they are.  I like that about young men.  Young woman let it all hang out with their girlfriends, but some do not reveal their "selves" when a young man is around.  Is it because a young woman does not want to "rock the boat" or alienate a boyfriend?  Don't you just love running into a young woman who does not care about things like that?  In fact, the world is not overly accepting of young women developing strong personalities.  I suspect most young men do not want a Bella Abzug for a wife, they want a Barbie Doll.  If you do not know who Bella Abzug was, then you were not politically active in the late 1960s and you really need to google her.  She was an amazingly accomplished and admirable political powerhouse who some tried to turn into a joke so as to diminish her power and influence.  Seems like some things never change.

We all change as we grow older.  I could be wrong, but I think women change over time more than men do. This is true for my generation, anyway.  I hope things have changed dramatically and the young whippersnappers of today are different.  It would make me very happy to be wrong, but I think Katniss Everdeen is still the exception to the rule. 

What do I mean by that?  Hopefully men will grow and change over time, but you often still recognize the essential 20 year old in a man even in old age.  The girl they married may have hung on their every word, blissfully allowing the husband to make all the major decisions when she was young.  The woman they grow old with may not be recognizable in that context.  Hopefully the husband has grown and changed along with her and has fallen in love with her all over again as she transformed into a woman.  Stranger things have happened.  But God help the old fart who marries a young woman.  By the time she becomes a grown up woman he no longer approves of, he might be too old and gnarly to find another malleable young girl.  Unless he has a lot of money, of course, then he might attract someone like Anna Nicole Smith.

Young women notoriously stop excelling at school around puberty and start researching beauty tips and clothing styles instead of math and science.  This is slowly changing, I am almost sure of it.  However, I fear a significant number of American Girls are still not being raised by parents encouraging them to be brilliant, quirky, or feisty characters.  It is sad to see a bright girl dumb herself down in hopes of attracting attention for how she looks instead of who she is, and even more sad when a grown woman does it.  I cannot help but wonder if Kim Kardashian has a personality or any deep thoughts.   If she does, she certainly hides them well.  Pink, on the other hand, is a celebrity I would be proud to know.  In fact, if you are not familiar with Pink's song "Stupid Girls" you really should listen to it.  Great stuff.

Once upon a time there was a psychologist named Carl Rogers.  According to the web site you will come to if you click on his name, he thought:

“…for a person to "grow", they need an environment that provides them with genuineness (openness and self-disclosure), acceptance (being seen with unconditional positive regard), and empathy (being listened to and understood).

Without these, relationships and healthy personalities will not develop as they should, much like a tree will not grow without sunlight and water.”

Some girls in traditional families do not get those things from their parents.  Hell, many wives do not get these things from their husbands.  Even in this enlightened day and age (?), many girls are not liked, accepted or understood, even in their own families.  Too many young girls are still being tolerated rather than celebrated.

I know a lot of exceptional women with strong and unique personalities who live normal lives and even vote Republican!  (I would insert a smiley face emoticon here if I could figure out how to use this blog site software.)  After many years of struggle and hardscrabble existence, these woman are living feminism, whether they want to own up to it or not.  They might have been meek and mild when they married their husbands at 19; however, they are no longer meek nor mild at 40, 50, 60 and beyond.  They are gloriously fully formed personalities full of piss and vinegar.  Deal with it!

It is true that I married T young.  However, I have always been a mouthy dame and I was lucky enough as a young woman to find a young man who appreciated women like me.  Or at least that is what I have always thought.   Just to make sure I am not deluding myself, I just went and asked T if I was meek and mild when he married me.   He answered with a resounding "YOU?" Then some laughter and maybe snorting.  "No, you were never meek and mild."  I am one of the lucky ones.  Or maybe he is?  

Old Friends

We had friends visiting from NYS this week; old friends.  Not that THEY are old, but two of the three have been my friends for a very long time, since the late 1970's and early 1980's.  The third has been a good friend since about 1990.  Well, perhaps we are old by some standards, but we certainly do not feel old. We all feel young.  I still feel like I am about 12 years old. 

They are work-related friends, people I met either working alongside them or in some other work-related capacity back in the day.  These friendships created deep ties.  We have been through so much together, with friendships waxing and waning over the years but always retaining a connection.  We were young together once, we all worked hard to build, establish, and excel in our careers, and now we are all retired.  Time marches on.  It is heartwarming to see that we still connect and can pick up where we left off regardless of how much time has passed.  It is fun to catch up on their lives and remember other friends (and enemies) from the same time period.   OK, OK, especially the enemies. 

A couple of days of girl talk is just what a doctor should have ordered for me.  It cheered me right up.  I love these women.  They are hardcore, no lightweights here.  They are women who lived their lives honestly, with great feeling, and on their own terms.  They are all comfortable in their own skins and revel in their individual personalities. We each married young, but they are older than me by 8-20 years.  So the men they married were pre-feminism husbands.  Rest assured these women have either retrained their men or divorced them by now.  It cracks me up to hear them talk about retraining tactics.  They are a joyous bunch.

Yesterday, sitting by the pool, we toasted a fallen comrade, Maggie, who died in 2006.  Oh how I wish she could have joined us.  She was what one might refer to as a ton of bricks.  I have never met a stronger personality.  She was older than us and alternately intimidated us and encouraged us to be our best selves.  She challenged our politics and our relationship choices at every turn.  This is a woman who refused to wear glasses because she thought they were a sign of weakness.  That is a direct quote, by the way.  She was single her whole life, and her listing in the telephone book was under the name Brandy Alexander.  If you were stupid enough to betray her  I am quite sure she could tear your heart out with her teeth.  We were all more than a little afraid of her. 

For many years this group of women (including myself) would meet Maggie at a yearly bazaar held at an elegant Victorian mansion turned restaurant over the long Thanksgiving weekend.  Let us call it a "Maggie mandated event."  The event was meant to kick off the holiday buying season and was called the Twelve Shops of Christmas.  We would eat a buffet lunch in the old carriage house on the property, staying long and talking loud.  She directed the flow of conversation and we all hung on her every word.  Then we would go into the mansion and shop in the twelve rooms where various upscale businesses set up shop.  It was fun. This annual event was often the only time I saw her.

In late August 2006, I received a call from another former co-worker and Maggie protégé, CA.  CA breathlessly and apologetically informed me that Maggie had been sick, was now comatose, was in the hospital on a respirator, and her family had made the decision to "pull the plug" that very afternoon.  CA has always been the one to inform us about former co-workers from that time period because she was the only one left at that particular workplace.  Her kindness is legion.  Unfortunately, she had only just realized she forgot to tell me when Maggie got sick.  For a while Maggie had been conscious and many of the old gang had gone to the hospital to see her and say goodbye.  Now she was not and the end was near.  This would be my last chance to see her before she was gone.  I was grateful to CA for taking the time to let me know. 

Leaving work immediately, I drove up to the hospital.  I walked into the Intensive Care Unit without anyone questioning why I was there and wandered from bed to bed until I found her.  Her eyes were closed, and her chest rose and fell mechanically.  From what I could tell, she was already gone.  It did not seem like a spirit inhabited that body.  I selfishly wondered why they had not turned off life support sooner.  What a cruel joke to pretend she was still alive.  She would have been angry for me to see her like that.  It was WAY beyond glasses.  In my mind I went on and on with my self-righteous indignation, as if I knew anything about anything.  In fact, I do realize how hard these decisions are for family; nobody wants to make a life or death decision for a loved one.  It takes great courage to do so, and such a decision requires a fearless nature and a clear conscience.  Not everyone can summon those qualities in the face of death.  It is just too hard.  Maggie could have made that decision for any one of us, though.  She was strong that way.

Maggie 1984

Picking and Choosing

Some people like change and others avoid it at all costs. I am not writing this because I have an agenda to push.  I do not subscribe to a one-size-fits-all life model.  It really comes down to who you are and what you need to be happy.  I am absolutely not comfortable with change, but I seem to need it periodically. I get antsy when things remain the same for too long.  I get bored easily.  I court change knowing full well the process of changing will likely be unsettling for awhile, and may even turn out to be a mistake; but I still want the change to happen.  I cannot help myself.  I come from pioneer stock.  Every so often I feel the urge to move on and reinvent myself.  It is called “throwing caution to the wind.”   It is my forte.

Retiring was a piece of cake, except for that unfortunate reduction in discretionary income.  It has been almost a year (I retired last Halloween) and I have never regretted the decision to retire.  Not working has been a pure joy.  We have always lived a fairly simple life, and we have adjusted to a limited income.  Still, I have not ruled out getting a part time job at some point for extra money.   I do not want to, but it would be nice to have some extra money to replace the sliding glass door to the pool area.  The door sticks.  I huff and puff and swear when I struggle to open it.  Plus, I would REALLY like to get my neck done…  I am almost serious about the neck thing.  Plastic surgery is definitely not in our retirement budget, but the neck is not pretty and it is getting worse.  I am not sure I can go through the rest of my life with my current neck. 

Moving, on the other hand, has been the real kicker.   Six months into it I can report that although I am surprisingly happy to live in Florida, I am not yet on the other side of the “process” of changing.  Changing residences interstate kicked our asses and we are both exhausted.  Part of that exhaustion was caused by bad luck, specifically the long delay in buying our house once we got down here last March.  The travel trailer era was a bit mindboggling to live through; however, in retrospect I am glad to have experienced it.  We rose to the occasion, and that is always satisfying.  Still...it sucked all the joy out of our initial move.  It would have been nice to feel excited about moving into a house instead of just feeling relief.  In addition, we moved from a 4-season, often cold and overcast, but devastatingly beautiful Northern blue state to a relentlessly hot, sunny, overdeveloped, and flat Southern red state.  In NYS we lived in the country amidst rolling hills and endless forest.  In Florida we live in a subdivision.  This all requires some adjusting.  I am not really complaining.  I was looking for change and these challenges certainly keep the old brain cells/sparkplugs igniting.  And I get to see my wonderful grandkids almost every day.  I cannot tell you how much I love that.  However, just selling, sorting, packing, moving from, and buying houses is a stressful process.  That was a LOT of work, for a long time.  I am tired.  I would really rather not move again until my daughter has to put me in the home, and then she can do all the heavy lifting.  I am not above faking dementia in order to get out of hard work.

There are significant cultural differences I notice whether I want to or not.  Some of the cultural norms in Florida are unfamiliar to me.  There are days when the differences are interesting and fun, and there are days when they are overwhelming and threatening.  This morning, for instance, I woke up at 5 am and got up in the dark house to look out the front window.  As you might remember from my last post looking out the window is one of my new pastimes, apparently even in the dark.  Today is garbage day. Everyone puts the garbage cans and recycling cans out on the street the night before.  Imagine my surprise to see a scruffy looking older man flying by on a bicycle down our darkened street.  He went from garbage can to garbage can, opening the lids and using a flashlight to see what he could see.   He held a big trash bag in one hand as he piloted the bike.  I saw him stuff something into his bag at the house down the street and then he drove away.  Yes, I saw a real live garbage-picker.  Things like that never happened in the hamlet we lived in up North.  The only person who came to our NYS house that early in the morning was delivering the paper.  

Joining the Bourgeoisie?

OMG – I find myself watching the neighbors through the blinds in my room.   How did it come to this?  

The neighbor to our right is a middle-aged woman with two teenaged children and a dog.  There might be a husband, but I have never seen him.  She seems very nice.  Of course nearly everyone in the South seems "very nice.”  It is hard for a Northerner like me to discern if she is really nice or just well mannered.  When we first moved in she came over and introduced herself and immediately started telling us the details about other neighbors on the block.  Not all the neighbors, just the white ones.  She did not tell me any information about the tattooed Hispanic guy who drives a Harley.  She did not tell me about the two black families who live on the street.   That raised a bit of a red flag with me.  If you remember from my May 29, 2014 post “Oy Vey, and I Really Mean It!” I am uncomfortable with living in a suburban neighborhood.   I do not want to know the details about my neighbors.   The neighbors on our left are our kind of people – they ignore us and have never even waved or spoken to us.   I am pretty sure they wish we would disappear.  I can relate to that sentiment.

So how did I develop this new spying behavior?   My room, aka office/quiltmaking/grandchild’s playroom, faces the street and during the day I keep the blinds open to let natural light in.   My computer is set up in front of the window, because otherwise the room seems dark and gloomy.  As I work on the computer I keep catching sight of Next Door Lady walking her dog, and going across the street to another neighbor’s house.  Every morning she goes over there around the same time.  You can imagine how intriguing this window on the world is to a retired woman with no friends and time on her hands.  I cannot help but notice.  I cannot help but wonder why is she going there every day?  She lets herself in the house and she always has her dog in tow.  There is another dog that lives across the street.  Maybe she is feeding it?  Next Door Lady never stays in their house long.  If I see Across the Street Family outside I inevitably see Next Door Lady walk over across the street and interact with the family’s dog or pick up their toddler.  Are they close friends, or maybe family?   Does Across the Street Lady like spending so much time with Next Door Lady, or does she cringe when she sees Next Door Lady hightailing it across the street whenever she ventures outside?  I wonder what the story is on the tattooed biker down the street?  Why am I thinking about this stuff?

I might move my computer away from the window.  Life is too short.  

Counting Calories

Day 3:

I started a diet two days ago.  Today is the day three.  I am counting calories using a calorie counter on my iPhone.  It is a nice app; it converts food to calories and also gives a nutritional breakdown so you know if you are eating healthy each day. When you first sign up you code in your age, height, and weight.  Based on this information the app determines the number of calories you can consume each day and still lose weight.  You can choose to loose ½ pound a week or a pound a week.   Obviously if you want to lose a pound a week your daily calorie count will be lower than if you want to lose ½ pound per week.   I chose ½ pound a week because I am a big weenie.  You then proceed to record everything you eat during the day, every day, possibly for the rest of your miserable life. My brother, Big D, has been counting calories for a while and he has lost over 55 pounds.  

All food has a total number of calories associated with it.  For instance, a McDonalds Quarter Pounded Bacon & Cheese Hamburger has 600 calories.  A large order of French Fries is 510 calories, and a medium Coke will add another 200 calories to your count.  Two scrambled eggs have 202 calories.  Six sweet cherries are 26 calories.  A peanut butter and jelly sandwich is about 360 calories.  You see where I am going with this.  You are kind of forced to eat healthy simply because it is the only way to eat more than once a day.

You also type in the exercise you do, including the kind, duration, and exertion level. Exercise burns calories. The great thing about counting calories is that you can earn food by exercising.  This is brilliant motivation for getting more exercise.

Imagine your goal each day is 1,500 calories.  At 7:00 pm, you find yourself wanting an ice cream bar that has a calorie count of 170 (Weight Watchers Brand– not the good kind, NEVER the good kind).  Unfortunately, you have already met your calorie goal for the day. You cannot just eat more because you will go over your goal and then you will not lose that ½ pound this week.  If you have been struggling all week to keep within the calorie goal to lose that measly ½ pound, you do not want to mess this up.  You really want to lose ½ pound.  In fact, if you do not lose ½ pound you will lose your mind.  Consequently, you jump in the pool and swim laps for 20 minutes because you know you will burn up 170 calories, thus reducing your daily calorie count down to 1330.   THEN you can eat that damn ice cream bar and your calorie count is back up to 1,500, within your daily goal.  Voila!  You have earned an ice cream bar.  Nothing weird about that.  Totally hypothetical example, of course.  Or maybe that is what I did last night?  No matter, it is exactly what I will be doing this evening.

I shared this purely hypothetical example with my youngest sister, who is also counting calories and has been doing so for months.  Her answer to me was "Wait until you see what you will do for a glass of wine!"  I can only imagine.  That sounds like a day 5 kind of challenge to me. 

Today I ate breakfast at 8:00 am.  It is now 10:30 and I am waiting for it to be noon so I can eat again. Eating my next meal is pretty much all I think about now.  

My Mother's Daughter

About 15 years ago my mother moved from the family home to a small apartment. She made the change a few years after my father died.  For over 35 years she lived in the old barn-like house that 6 of my parents’ 7 children at least partially grew up in.  Of course it was not a barn, but it resembled one so I will henceforth refer to it as the Barn House.

There was 20 years between my oldest sister, CHD, and my youngest brother, WW. CHD was grown up when we moved into the Barn House.  She only lived there for a couple of months before she found an apartment and got on with her adult life. I must have been about 12 when we moved in.  I was in 7th grade.  There was a lot of living that made THAT old house a home!  At first there were only five children living there, because CHD had moved out in 1965.   Good Catholic that she was, my mother was soon pregnant again and we had a sixth child living with us (the 7^th sibling) in the Barn House by 1966.  In The Borg society, I am referred to as 3 of 7.

When Mom made the decision to move, I went to Northern Indiana to assist my siblings in paring down her belongings.   The goal was to keep only the “essentials” enabling her to fit into a one-bedroom apartment.  My sweet mother is a fully realized pack rat.  She saves everything because everything is on her “essentials” list.  It was always chaos in that house, but after 35 years the Barn House was jam-packed with memories and odd treasures.  Old pictures were in every drawer, and filled old purses and boxes tucked away in the back of her closets.  Cookbooks were stuffed with additional handwritten recipes.  Her bibles, St. Joseph Missal (Latin/English) and post Vatican II missal (English only) were chock full of genealogical goldmines in the form of funeral cards and obituary clippings.  She saved every saint medal, holy card, rosary, ceramic Blessed Virgin Mary statue, and wall crucifix her kids and grandkids ever gave her.  She has 7 children and 16 grandkids so that made for a lot of Catholic tchotchkes.  I do not know how many years worth of braided palm leaves we found.  For those of you who do not know, you get palm leaves when you go to mass on Palm Sunday.  You take them home, braid them and put them up in the house.  It is a Catholic thing.  I actually had one up on my bulletin board in the NYS house. Why not?  I threw it away last February before WE moved. Actually, I regret throwing that braided palm away.   What was I thinking?

It was fun wading through each room of my parents’ house one last time.  Of course I wanted to help my Mom and my siblings, but I must confess my primary purpose was to wallow in my mother’s things for the last time. I savored every drawer full of "stuff" and every room full of junk. That "stuff" was soul deep.  It was about my past.  It was about my parents’ life together.  It was about my mother’s neurosis. It was all a living testament to my mother’s strengths and weaknesses.  I wondered if our lives would change once her "stuff" was gone.  Interestingly, it was also about old time Roman Catholicism, the kind of mystical/devotional life every Catholic was taught to observe back before Vatican II modernized the church in the mid 1960’s. I have to stop before this post turns into my standard rant against Vatican II changes.  It always shocks people who mistakenly presume my normal liberal views would support saying the Mass in the vernacular.  That rant will have to wait for another post.

Unlike my more pragmatic siblings, I could not fault her when I found stacks of old church calendars in a corner of the kitchen.  These are calendars that each parish church gives out free to parishioners every year. The pictures of saints, the BVM, and her illustrious son were reason enough to keep them. They were beautiful.  There are many things one might fault the Roman Catholics for, but their art is not one of them.  For crying out loud, wouldn’t it be a venial sin to throw out things like that anyway?  OK, I threw them away when she was not looking, but still – I was so happy to get my grubby little hands on them for a few minutes. I stood firm in defending this collection, although I did kind of wonder why the pile was stacked on top of chocolate covered cherry boxes filled with old recipes and newspaper clippings that were stored underneath a chair pushed in a corner of the kitchen.  But then again, the opposite corner held a cart filled with old newspapers and magazines.  Maybe it was about balance, or a feng shui decision meant to increase the flow of favorable energy in the room?  I am willing to give the old lady the benefit of the doubt.  I love her madly and I find her quirkiness endearing. 

Believe it or not, I found a handwritten Pillsbury Flour Contest recipe submission that my maternal grandmother (who died before I was born…) submitted in the 1940s.  It was lying between two magazines in a pile of many.  I wish I knew how it got there.  If I had just picked up the entire pile of magazines and dumped them in the trash this recipe would have been lost forever.  Talk about treasure!  I probably slowed everyone down because I insisted on looking at every knickknack and perusing old recipes to my heart’s content.  I did not care, though.  On that day I imagined myself an archaeologist of sorts, and I am nothing if not self-indulgent.  It made the old lady happy, too.  She was thrilled that I valued her stuff.  I was having fun and I might even have been her favorite child for a few fleeting moments there.  When you are 3 of 7 you appreciate those fleeting moments.

I took pictures of rooms and furniture and piles of junk.  My younger siblings thought I was nuts.  They seemingly had no nostalgic feelings about the Barn House.  They just wanted to throw everything away so the house could be cleaned out, cleaned up and sold.   I was shocked and disturbed.  Why wasn’t I practical and focused?  Could it be that I am like my mother?  Oh, HELL no!

The best part was when three of us went through the linen closet with my Mom present.   She had a huge upstairs hallway closet with lacquered wooden doors that opened up like French doors.  This linen closet was wide enough that all four of us could stand and sort through the shelves at the same time.  We found many linens, very few of them useable.  There were old tablecloths with holes in or stains on them, sheets so threadbare you could see through them, and old towels and doilies that were tattered and torn.  Unfortunately, our sweet mother did not see them in the same way we did.  These things held different meanings for her.  She became agitated and defensive, not wanting to throw anything away.  Her standard response if we posed the question “Can we throw this away?” was “No, it is still good, someone could use that.”  She displayed classic Depression Era post-traumatic stress syndrome with subsequent hording behavior. It was amazing to observe at close hand. Her eyes were wild. She positioned herself behind us so she could see exactly what each one of us was doing.  She pulled things off the trash pile if we tried to sneak them there without asking her first.  We made four piles on the floor: the trash pile, the Goodwill pile, the give-to-a-family-member pile, and the keep-for-the-new-apartment pile.  I think you can imagine how much went on the trash pile. 

After 15 minutes our sweet mother could no longer stand the sight of us.  We took a break.  We three siblings conspired when Mom went to the bathroom (do not get me started on her bathroom…). We decided to reassure her by putting the unusable things she could not bear to throw away on the Goodwill pile and then throw things away when we took them away from her house.  We also agreed to “take” many things she wanted to pass on to family that in reality no family member would possibly want, and to quietly dispose of them accordingly.  Sorting into piles became easier for all of us.  She was happy, we were happy, and the job got done.

I came home from that visit with many amazing treasures:  An aluminum potato ricer I have absolutely no memory of, the tin French fry slicer that had intrigued me my entire childhood even though I do not make French fries, a heavy metal meat grinder I will almost certainly never use, the no-tech haircutting tools my grandmother used to cut our hair as children (giving us Mamie Eisenhower bangs in the 1950s).  I foolishly brought home two boxes filled with the inexpensive Currier and Ives-style china that my Mom had painstakingly purchased piece by piece at the grocery store.  I did not want them, but it made her so happy when I said I would take them.  I also had Mom’s old Singer sewing machine even though both my daughter and I already had new machines.  I took many funeral cards and all the Blessed Virgin Mary statues that I ever bought her, despite the fact that I have not been a Roman Catholic since 1968.  It made me happy to take these things, but I found it made me sad to have it all. I am happy T and I were able to get rid of so much “stuff” this past year in anticipation of our move to Florida. That is when I finally gave the potato ricer, the china, and the old sewing machine to the Salvation Army.  They were still good.  I am sure someone is using them.