Wait a Minute!

Hey, wait a minute!  Do you remember last time when I said there were no further incidents at the nursing home?  I forgot something.

This post is a bit macabre.  Please note I am a fallen away, pre-Vatican II Roman Catholic, so I can quite literally go medieval on your ass.  I stopped going to church in the late 1960s when the Catholic Church instituted reforms to modernize the mass.  Because I stopped being a Catholic at that point in time my religiosity has never been altered or modernized.  I take my spirituality straight up and I yearn for dead languages, strong incense, and Gregorian chants.  It is a religion that no longer exists in reality, but it is still and always a part of who I am.  I am culturally Catholic in the same way that non-religious Jews are culturally Jewish.  There is nothing I can do about it.  If you do not want to see this side of me then please do not read the following.  Wait for my next post where I promise I will leave death and dying aside.  I may even write about the beautiful weather we are having.

So much was stolen from my mother's room at the nursing home, at the assisted living place she lived in before she was moved to the nursing home, and at a rehabilitation center she was in for a short time a few years ago after surgery.  I am not sure if the wretched thieves were aides, nurses, roommates, or other wandering residents - but multiple people stole things from her rooms in each place.  It is a sad fact of life at nursing homes.  We learned to move anything of value to my sister ERB's house.  What innocents we were at first.  I still have a hard time imagining how someone could feel they are entitled to steal an old woman's belongings when she is at her weakest and most vulnerable.  The assisted living home where she lived for about 5 years before being moved to the nursing home last year was the worst.  Drugs and candy were always disappearing.  Before we figured it out someone stole her diamond engagement ring out of her dresser drawer.  It was supposed to have gone to my baby sister, ERB, as a reward for spending all those years being her principal caregiver.  You might ask, "Why did you let her take her jewelry to a place like that?"  I might answer, "Try telling an older woman who is still in her right mind that she can no longer keep her engagement ring with her when she moves into a private, one-bedroom apartment in an assisted living home."  

The coup de grâce came when she was dying.  Someone stole both of her favorite rosaries from her home-room (let us call it the "living-room") while she lay dying in a different room (let us call that room the "dying-room") in another wing of the nursing home.  She was moved from her "living-room" right after she had the stroke, and for the following week she was in the "dying-room," a large private room where the family could maintain a private vigil.  Her two rosaries were always draped over a picture frame next to her bed in the "living-room" so she could reach them if needed.  One was her special rosary; the one she specifically stated, in writing, was to be buried with her.  It was given to her by one of her sisters, and it had been blessed by Pope John Paul II; a man who was also a victim of Parkinson's Disease.  He died, has been proposed for sainthood, and will eventually be canonized.  He was an absolute rockstar to my Mom. 

We should have retrieved those two rosaries and put them by her death bed, I know, I know.  If only I could turn back the hands of time.  We were all a mess, though.  I must confess no one thought of it.  We were overwhelmed.  We rarely went down to her "living-room." I could probably come up with a few more excuses.  However, in retrospect I must say: "mea culpa, mea culpa, mea maxima culpa," which roughly translates from the Latin as "It's my fault, it's my fault, it is REALLY my fault." 

I know theft is a crime, but please humor me for a few minutes while I consider the act as a sin.  This rosary theft is a sin not only against my sweet mother and her family, it is a transgression against the nursing home community.  The wretched thief exists, but since we do not know who it is we begin to suspect everyone.  I really hate that, because the vast majority of the staff and residents there are kind and good.  Putting her/his co-workers under the cloud of suspicion is a whopper of a sin, way bigger than a mere venial sin, it is a mortal sin for sure.  This sin impacts on many innocent people in many ways.  The injustice almost takes my breath away considering the complex repercussions of one casual, selfish, voluntary act.

I like to assume the wretched thief was a twisted Catholic AND a moron who thought she/he was entitled to a memento of my mother.  Why else would someone take two rosaries?  Because I am a sinner myself, I choose not to forgive the wretched thief.  Not now.  Hopefully someday, but not quite yet.  It is too soon.  Instead,  I hope this sin haunts the wretched thief in the dark, disturbing her/his sleep continuously until the wretched thief returns the rosaries to the social worker.  Then I might forgive her/him.  Okay, we all know that's not gonna happen.  It is an idle fantasy of a grieving child.  It is only in the irrationality of my grief that this fantasy makes me feel better.  I hope for justice and, okay - make me say it: revenge.  But even if the rosaries were returned, what would we do with them?   We will not dig up the casket to put the rosary in her hands if it suddenly appears.  She is holding a different rosary now, anyway.  It is just not the one she wanted. The time has passed to make this right for my mother.  Still, I wish I could let this go.  

I have not been a practicing Catholic since the late 1960's; however, it is all coming back to me now.  My better self would pray for a miracle,  hoping the wretched thief would come to her/his senses, return the rosary, and do penance for her/his sin.  Unfortunately, my better self seems to be missing in action along with the rosaries, diamond ring, other jewelry, knicknacks, pills, candy, and cookies that have disappeared over the years.  For now, I look for justice.  Still, what is justice in this instance?

Hopefully I will eventually realize that if I am still angry about this then I am foolishly allowing the wretched thief to continue to hurt me.  My anger merely keeps the sin alive.  True forgiveness involves freeing oneself from anger and allowing the sin to rest only with the sinner.   Perhaps that is justice?  I don't know.

Death and Dying

My mother passed away quite peacefully earlier this week surrounded by 4 of her 5 living children and a wonderful Hospice nurse.  It was beyond lovely.  We were talking about her, telling stories, and she quite simply took her last breath and "gave up the ghost."  It was an unbelievably wonderful experience.  She was not in pain, went on her own terms, and she was feelin' the love.  

I had been staying in my mother's room at the nursing home for five nights prior to her death.  The nursing home was totally supportive of her and the family.  They transferred her to a large private room so we could all come and go as we wished.  We maintained a 24/7 vigil so she would never be alone. It was fascinating to observe the organizational behavior in a nursing home, and I came to know many of the staff members.  I can tell you they are overwhelmingly good-hearted folks. They all seem to do the very best they can.  The nursing home staff spend their days and nights working hard, quietly caring for and about people.  I noticed they proudly and carefully built relationships with each patient. I was moved by the many nurses, aides, food service workers, custodial staff, and administrators who came to her room to say their goodbyes, or to see how she was. They all seemed to genuinely like her. They told stories about her. They knew her.  Their kindness was an extraordinary gift.  Is the nursing home a perfect place?  Not by a long shot.  But what is?  Seriously.  Everyone is just trying to find a way to roll with the punches in this mysterious world we inhabit.

It took my mother a week to die.  She had been faring poorly for weeks, and had been refusing to eat.  She had a stroke during the night and did not wake up on February 24.  As always, my younger brother and sister were right there to take care of business.  When my older sister and I arrived from opposite coasts on Wednesday, February 25, the nursing home staff was still trying to give my mother morphine for the pain.  Unfortunately, she always had a bad reaction to morphine.  Wednesday afternoon we called Hospice.  A Hospice nurse arrived Wednesday evening to evaluate Mom and to set up her new pain management routine.  This particular nurse had started her day at 6:00 am that morning and would not go home until close to 11:00 pm that night. She was determined to stay until she found a better painkiller for Mom than morphine, and she did.  She found dilaudid the wonder drug.  Thank you, Hospice Nurse.

The Hospice nurse first tried to increase the morphine, because increasing the dosage sometimes works.  We tried that, but it did not work for Mom.  Morphine made Mom agitated and uncomfortable.  The Hospice nurse immediately sat down and did some research.  Mom was in the advanced stages of Parkinson's Disease and could not swallow pills.  Hospice Nurse found a liquid form of a drug called dilaudid that could be administered to Mom orally.  Unfortunately the local pharmacies did not have that particular liquid version on hand. The bad news: it had to be rush ordered from Indianapolis, 3 hours away.  The good news: the company would send it out right then and it would arrive before morning.  As soon as it arrived she would be administered the dilaudid and she would then be free from pain.  In the meantime, Hospice had the nursing home staff continue giving her adavin and morphine to try to relax her and free her of the pain caused by Parkinson's Disease cramping.

That was my first night in the bed next to hers.  By the time I awoke at 5:30 Thursday morning, I figured the new drug had arrived.  The medications given throughout the night were wearing off and Mom was grimacing and writhing once again.  I went to the nurse station twice asking for them to start her on the dilaudid.  I had been told the dilaudid arrived in the wee hours of the morning, but it had not been given to Mom yet.  Each time I went down there the Night Nurse told me they would get it to her in “a few minutes,” but no one came.  I was trying to be a nice person, but you know – my sweet mother was in great pain and I was the only one there to make it stop.  It was a job I did not want, but it was a job I absolutely had to do well.  I did not want to get angry, but my patience was wearing thin.  One of her favorite nurses aides stopped by to see how Mom was doing.  I told her what was going on and how many times I had been down there begging for help.  She said she would remind the people at the nurse station to bring the drug to us as she passed them walking back to the residential area of the nursing home.  She also told me to press the button on the call light for help to get their attention and remind them I was waiting.  At this point my sweet mother was literally writhing in agony.  I pushed that damn button and waited for 10 long minutes, but the Night Nurse never answered the buzz for help.  She never acknowledged it. Damn it!  I had to leave Mom alone again and speed walked down to the nurse station to demand the new drug.  I think of that movie with Shirley Maclaine running up to the nurse’s station screaming for pain meds for her dying daughter.  I get it.  I had to get right up in someone’s face to get some attention. I told the Night Nurse not to tell me again she would get the drug to Mom in a few minutes unless she specifically meant she would be there in 180 seconds, because that’s approximately what a few minutes are.  I told the two nurses that I understood they were busy and I knew they were understaffed, however, my mother was dying in agony and it was not about us, it was about her.  They were undergoing a changing of the nursing staff (from night staff to day staff) at that moment, and they made me wait another 10 long minutes for them in the room as my mother moaned and grimaced in pain.  Ten minutes, by the way, is 600 seconds.  I was in tears.  I was failing her when she needed me most.  I was not able to find the right words or do the right things to stop her pain.

When the Early Morning Nurse finally came down with the painkiller, she was clearly angry with me.  She told me that she was actually giving my Mom the pain meds 15 minutes before they were due.  I could not *&^%$# believe it.   Night Nurse had not updated the Early Morning Nurse at the change of guard about what was happening with the change in Mom’s pain meds.  I told Early Morning Nurse this was not a routine procedure, so when her drugs were "due" was not relevant.  I told her Mom was being taken off the morphine that morning because Hospice had determined it was not helping.  I told her Mom had never had the dilaudid previously AND that we had been waiting all night for it.  I told her that we had been promised that it would be administered as soon as it arrived.  I could not tell Early Morning Nurse exactly what was on my mind right then because, well, Mom was there and who knew what she could still hear. 

Early Morning Nurse was clearly hearing this information for the first time.  The realization that this was a simple "mistake" (yeah, let's call it a mistake) at the worst possible time nearly did me in.  My eyes were rolling back in my head and veins were popping out all over my forehead.  Clearly when I was down at the nurse station they were just “handling” me, biding their time until they thought Mom’s meds were due.  Why they kept saying they would be down in “a few minutes” instead of just telling me the truth (i.e., “We are not going to give her any more drugs until she is due for more drugs”) I will never understand.  It was the most infuriating example of “by the book” mentality and lack of communication I have ever experienced.  Had they told me the truth, I could have respectfully solved the problem immediately.  It was, as my sweet Mom would say, a sin and a shame.

This was the only bad experience we had with the nursing home during that long week of death and dying.  Hospice straightened everything out once they were informed and there were no further issues, nor any pain after that.  I made up with Early Morning Nurse (there was some hugging involved) as well as Night Nurse (who I actually came to like by the end).  I forgave them, they forgave me, and we got on with the business of dying. 

Beautiful!

I am sad to say that my mother is dying. I flew to Northern Indiana early Wednesday morning to be with her and help my siblings care for her in her final days. We have spent the last few days making sure all of Mom’s 16 grandchildren have had a chance to talk to (at, really) her on the phone and give her their love or say their goodbyes from whatever part of the country they happen to be in.  

Mom has been unresponsive for most of the time I have been here. It is best when she is unresponsive, because she is in so much pain when she is semi-conscious. She rarely opens her eyes now. 
It is likely she had a significant stroke overnight between Monday and Tuesday. She has a do-not-resuscitate directive in place.  Interestingly, terminal DNR patients are not taken to the hospital. The nursing home simply tries to make the patient as comfortable as possible until the end.

The first couple of days she was in agony, and she was not tolerating morphine well to combat the pain.  It was awful. My brother called Hospice and a kindly team of nurses and aides came to the nursing home to take over pain management for her. What a truly wonderful organization Hospice is. They care. Of course the nursing home staff care, too. They have been very sweet to all of us. They moved Mom into a private, larger room which can accommodate the many children and grandchildren who are stopping by. We are keeping a constant vigil in her room, day and night.

ERB told me that on Tuesday afternoon a number of family members were in the room with her, including 3 grandchildren. She, of course, is comatose.  However, in the midst of their visit she suddenly tried to sit up and open her eyes. Then she laid back down and said "God, it's beautiful!" I was happy to hear this story, and even more happy that some of her grandchildren were there when it happened. That story will stay with them as long as they live, and it will reassure them that death and dying can be a beautiful part of life. 

Old Wives and Vampire Killers

I am not biking, hiking, exploring, or being active in any meaningful way because I feel like crap.  I've had the flu, and Iam not doing much of anything except laying on the couch reading trashy paranormal romance/urban fantasy novels. That sounds great, I know, and it is. But probably not for the reason you think. I no longer read each page because they all pretty much follow the same formula and they are not written particularly well. In fact, I can read one of these books in a day. I have been skipping the sex parts for years.  The sex scenes are all pretty much the same.

Why do I still read this genre? Because I love reading the parts where these women beat up bad guys. They kick ass and take no prisoners. These women are not afraid of anything. Should I be ashamed to admit that is MY fantasy?  And these heroines always have some kind of magical power that helps them kick bad person ass. Way fun.
I also started reading this great book on Fairy Tales (From The Beast to the Blonde, by Marina Warner). It is chock full of subversive information about what people in the Middle Ages thought of old women. Apparently we are all useless, (i.e., no longer able to conceive children), physically repulsive, scary old gossips who spread "old wives tales." The up-side is that we are also the original source of Fairy Tales. 

Imagine grandmothers throughout the centuries telling their grandchildren tales the storytellers heard from their own grandmothers. These stories were dismissed by the literati of their times as the inane drivel old women used to stoke the irresponsible fantasies of young children. Still, the storytelling continued until eventually men like Hans Christian Anderson, Charles Perrault, and the Brothers Grimm decided to collect the old tales, write them down, and sell them for profit and posterity. However, the men who wrote down these stores often changed them, cleaning them up to make them more acceptable to the later Christian reading public. 

It seems grandmothers in the Middle Ages used to tell it like it was: weaving and repeating tales that warned their grandchildren about the dangers of violence, greed, brutality, abuse, scam artists, and even incest. They taught children how to use their heads in a crisis and avoid becoming victims. They also taught them to be nice to old hags they might meet in the woods, because those old hags might be fairy godmothers in disguise!  What great advice! THEIR grandkids were schooled in street smarts and knew who and what to avoid.  Our grandkids, relying solely on Disney to tell them the watered down and revised tales, are naive at best. Our kids mistake the old hag they meet in the woods for an evil old witch who should be ridiculed, ignored, or worse. Talk about bad manners and meanness of spirit! I am surprised more young people today are not spitting out toads when they attempt to speak. 

At worst, our granddaughters spend their lives obsessing over their appearance and looking for a gentleman prince who will change their lives. I think we should be telling our granddaughters to forget about getting that Princess makeover at Magic Kingdom and instead we should help them figure out how to spin straw into gold.

Plan for your retirement, my sweet! Give your future husband a break and change your own life. In the meantime, I am going to continue speed reading urban fantasy for the fight scenes. My sweet Grandma only told me Bible stories and I still have a lot to learn.

Sisterhood should have been a lot more powerful

After all these years, feminism still has a long way to go before it becomes acceptable to the masses. If you do not believe me, just wait until Hillary runs for President and the wingnuts start to criticize her outfits and hairdos instead of her political message.

Back in the late 1960s, when the so-called second wave of feminism was young and vital, I was young along with it. The "first wave" was in the early days of the 20th century when the suffragettes were fighting for women to get the right to vote.  Anyway, I remember going to hear Dr. Benjamin Spock speak at Notre Dame circa 1968. I am not referring to the Vulcan who was also a pop icon at the time, Dr. Benjamin Spock was the guy who published a book in 1946 originally called The Commonsense Book of Baby & Child Care.  This wildly popular child care book was subsequently blamed for permissive child rearing and the resulting radicalism of the baby boomer generation. Indeed, his book was quite radical and forward thinking in the 1940s and 1950s.

Of course he was a man of his time and the gender role stereotypes he pushed in early editions of his book were deemed sexist by the late 1960s. I was a high school student and I vividly remember how exciting it was to hear the college-aged activists in the hall shout him down and call him out on his sexism. Those women were fearless powerhouses like no women I had seen before that night. They were no ladies! They were superheros. You may remember their crazy radical feminist notions, like recognizing that fathers should help out with childcare, that at least half of the children might be female, and that women had the right to work outside the home.

Spock actually listened and later changed his "message" in subsequent editions and even apologized to women for not thinking of us as fully realized human beings. In 1976 the newly enlightened Benjamin Spock divorced his old wife (the mother of his children, the one he married in 1927 and the person who helped research and write that famous book) and he married a woman 40 years younger than him. Concerning his second wife, he was quoted as saying "she gave me back my youth."  Gag me with a spoon. I guess no one told him about the sins of ageism.

I attended my share of consciousness raising groups and women's writing workshops back in the day.  I tried (and failed) to make my daughter play with trucks instead of dolls. I happily signed up to attend assertiveness training workshops.  I wish those still existed, they were quite useful in instructing us how to be women instead of ladies. In case you did not know, second wave feminists did not want to be called or thought of as ladies. "Ladies" tottered around aimlessly on high heels never thinking deep thoughts or challenging authority. Let me be perfectly clear: Ladies have cooties. Women kick ass.

By the mid-1970s I was discouraged by the movement's subsequent focus on the rights and privileges of upper middle class women.  It seemed to me that was all the women's movement came to care about in later years; enabling women of means to enter the professions alongside their equally privileged men. I am all for upper class women having the same opportunities as upper class men, of course. However, none of my friends or family members were going to become doctors, lawyers, or professors; not because they were not smart enough to become professionals, but because no one was paying for them to go to college. Let's be honest, working class people do not have parents who can buy them a future.

It would have been nice if the later women's movement had been interested in understanding and supporting the special struggles of working class women. Feminism might be more than just a tired joke in some circles today had the movement embraced all women and not just the elite few.  I was not alone in feeling undervalued and ignored. Class struggle was arguably the downfall of the second wave of feminism in the 60s/70s.  I would recommend an article written in 1977 by Marlene Dixon.  She was a bit of a firecracker and definitely too extreme in her politics, but it is still a good read if you are interested in stepping back in time and immersing yourself in the history of feminism.

In truth, the 1960s/70s women's movement was different at first.  Feminist ideology influenced and/or energized organizations that really made a difference in the lives of all women, like Planned Parenthood - an organization that was started by Margaret Sanger, a first wave feminist and onetime labor activist.  Some other efforts championed in the glory days of feminism were the creation of professionalized day care centers, job training programs, battered women's shelters. Affirmative Action has its problems; however, women and African Americans would not have been hired into traditionally white male jobs or professions without it.  Again, not because they were not capable of doing the jobs, but because they would never have gotten an interview without Affirmative Action stepping on the toes of the white guys in charge of Human Resources.

Second wave feminism WAS successful in altering the cultural landscape and making things a bit better for women. Don't let anyone tell you any different.  Why then is the concept of feminism seemingly still a hard sell for young women, women of color, rural women, and working class women?  In my opinion, the "second wave" of the women's movement simply did not finish the job, instead becoming decadent, myopic, and self-serving. The leadership failed to stay interested in or establish meaningful dialogue with these disparate groups of women. When that happened, it stopped being relevant to the majority of women. It is all about perception, after all.

What Next?

I got an email the other day from a newly retired friend.  It was actually her very first day of being retired and she did not know what to do next.  Ha!  I told her to do nothing.  That is the hardest part of being retired, learning that you no longer have to define yourself by being productive. "Have to" being the key words.  It is a totally different way of thinking, and it takes some getting used to.  

At the risk of being outed as an old hippie, let me say this post reminds me of a late 1960s-era Blind Faith/Stevie Winwood song, "Do What You Like," the last verse being:

"Open your eyes, use your head, 
realize that you're not dead
Take a look at an open book,
let it cook
That's what I said, do what you like" 

Bacon and Blockbuster Brunch

Our granddaughter, E, spent a few hours at our house today at what I hope served as our very first Bacon and Blockbuster Brunch.   

She is a young "tween" at that awkward age between child and teenager.  I tend to get on her nerves now, so it is hard to find ways to bond with her.  Making silly faces followed by long, loud, fake burps used to enchant her.  In simpler times we made up stories together, each developing the plot for a few minutes and then passing it on to the other to continue the story line.  The goofier the plot, the better.  It was great fun.  Apparently, not anymore.  Darn!

I am struggling to find ways to relate to her tween mindset.  I need to find things to do with her that she likes to do.  Unfortunately, playing Minecraft on the PS4 makes me car sick.   

FYI, the only person who admires me unconditionally these days is my grandson, who is not yet 3.   He thinks my silly faces and fake burps are hilarious.  In fact, he told me the other day that when he grows up he wants to be a Gwamma.  I still have a few good years left before he stops wanting to hang out with me.  Then I may have to run away and join the circus.  Finally.

This morning I was missing her.  I decided to invite her over to watch Raiders of the Lost Ark.  She was seriously considering coming to the old folks home, but I could tell she was wavering.   I promised to make her brunch with bacon, eggs, AND pancakes.  She was immediately in.  T went to pick her up while I cooked, and we had a lovely few hours together, the three of us.  

She left happy, filled with pancakes and smelling of bacon grease. 

My New Car

I did it. I am the proud owner of a brand new car. What kind? Does it really matter? It is just a car. The good news is I bought one, although my husband T is the real hero in this story. He researched cars and options, shared his findings, figured out what was holding me back, eliminated the millstone around my neck, and drove me to the car dealership.

I am not your average new car buyer.  I do not really want to buy a car, nor am I in love with cars in general.  I am also unpredictable, quirky as hell, and always anxious to leave because I have a short attention span. This forces the salesmen to think on their feet.  Literally.  I am continually getting up and saying I will think about it and get back to them tomorrow.  They then have to stand up and quickly think of ways to get me to sit back down and continue to listen to their salesman shtick.  Sometimes discounts ensue as a direct result of standing up. Very interesting. Car salesmen REALLY do not like to let anyone leave without buying something.  I, on the other hand, would NEVER buy something as expensive as a car without leaving first and thinking about it overnight.  We got an additional “loyal customer” discount immediately after the first time I stood up and said goodbye.  Honestly, I was totally not playing the guy for another discount.  I just wanted to go home.  I did take note of his reaction for future reference, though.  Fun stuff.

On Wednesday, we went to look at cars.  Almost as soon as we got out of the car a friendly car salesman came out of the building to greet us.  Our friendly car salesman was an ex cop from the Bronx.  Apparently he retired from the police force in his mid 50’s and moved down to Florida. He is a quick talking Italian with a loud sense of humor, and he talked about his mother a lot.  Lots of strangers now tell us about their mothers, I guess because they are trying to relate to us as retirees.  He also told us about his younger cousin who is still a NYPD cop who had just made a big arrest.  He was very proud of his “little cousin.”  We were, too.  Our friendly car salesman still walked like a cop, which made me imagine we were actually starring in a TV cop show.  I tried to play it cool, but you know… I am not really all that cool. T surreptitiously nudged me when I mindlessly started to tell the guy what was wrong with the old car we wanted to trade in.  I changed the subject without missing a beat.  Thank God for the old man!

Sometimes I develop what I can only imagine is a mild form of Tourette’s Syndrome making it impossible for me not to say everything that comes into my mind, kind of like a teenage girl.  Consequently, I simply had to tell our friendly car salesman that he still walked like a cop. It made him happy to hear that!  He searched through his cell phone for pictures of himself when he was in uniform. Ha! The older I get the more I enjoy people.

On Thursday we went back to test drive and then buy the new car.  Yeah, we forgot to test-drive it the day before.  What can I say?  I actually made T test-drive it for me when we got to the dealership.  I rode shotgun.  Our friendly car salesman thought that was odd, and he sat in the back trying hard not to notice T’s driving. He kept talking to T while T was driving, asking him questions and telling him to look at certain things in the car. Not good. T really needs to focus when he drives.  If T missed a few turns and test-drove a little too long trying to find his way back it is our friendly car salesman’s fault, not T’s.  I tried to tell T when the turns were coming up, but he was listening to our friendly car salesman instead of me.  Big sigh…

The financial guy was an African American from Maryland who did Obama and Bill Cosby imitations for us while we filled out paperwork. He was good at the impressions, too. The more we laughed the more impressions he did. He should have been on stage at Comedy Central instead of behind that desk. We heard stories about his son trying to get out of mowing the lawn. His wife called while we were there and he said “I love you” to her before he hung up. I liked that, but I also wondered if our friendly car salesman was actually the person on the other end of the phone and not his wife.  Maybe the phone call was part of a larger plan to make them all seem more human and likeable so we would give them spectacular reviews in the follow-up survey about their customer service?  Sheesh, I am so distrustful.  In fact, our friendly car salesman had joke-called the financial guy from another room just after financial guy finished showing us his Obama routine.  Our friendly car salesman asked to talk to the President.  The financial guy said (in Obama’s voice) “Sir, NEVER call the Oval Office again!” and hung up on our friendly car salesman. The financial guy also teased our friendly car salesman when he returned by accusing him of actually having been a mall security officer instead of a NYPD cop, which made our friendly car salesman search even harder for photos to prove his street cred. These two guys obviously have fun at work.  It made me wish I worked there, too.

Our friendly car salesman said he would call me the next day to follow-up on the sale. I waited all day for the call that never came.  I was a little disappointed. Then I remembered he had my cell phone number.  As I mentioned in my last post, I do not turn on my cell phone.  Sure enough – there is a missed call from him on he cell phone. Oh well.  I am not going to call him back. 

I bought the exact model and make of car as I had before. This car is just 11 years newer and a different color. That is how my wise and subtle husband finally got me to the dealership to buy a new car.  He seemed to understand my real problem was not that I was afraid to go to the dealership, it was that I was overwhelmed by the plethora of possibilities inherent in deciding which car to buy.  How can I possibly make a decision about what car to get when I do not really care about cars in the first place? What criteria do I use to make a decision?  Why do there have to be so many different kinds of cars?  Why did I buy an online subscription to Consumer Reports when it only increases the variables and fills me with anxiety?  T gently said to me “You seemed happy with your old car, why don’t you get another one?” Pure genius! I love that guy. Getting a new car just like my old car turned out to be the answer. After all, I just wanted my old car to be young again.  Luckily there was only one car there in the configuration I desired (i.e., basic with no frills), so I did not even have to suffer over a choice of color.  I took what they had.  Another decision successfully avoided.  In the future, I would like to be assigned an updated version of my current car every 10 years whether I need a new one or not.  Surprise me with the color.

The best news is I paid almost the same amount for the 2015 model as I paid for the 2004 model purchased years ago. Why? Well, it is certainly not because I am a cool negotiator. Rather, 10 years ago I was still working.  I thought nothing back then about paying extra for every option and/or feature imaginable (sunroof, leather seats, heated seats, accessories, car-top rack, trailer hitch, etc.). The one I bought yesterday is just your basic, basic, basic model. I still have air conditioning and a clock, but I do not need a sunroof, leather seats, or heated seats in Florida. As for the trailer hitch, we sold that damn boat before we moved.  Advanced technology features? The car comes standard with a back-up camera that comes on automatically when you are backing up the car. This is a very cool option and now I will not back into my neighbor’s cars or fear for small animals anymore.  However, if I had to pay extra I would have done without it. Other things? I would never use any feature that one has to refer to a manual to figure out, so why pay extra for complicated features?  I am pretty comfortable saying no. However, the car did come with magical Bluetooth “stuff” that allows me to answer and talk on my cell phone without using my hands. Our friendly car salesman set it up for me, but I am not sure I remember how to make it work. Oh well. As the saying goes, “You can’t miss what you ain’t never had.”

This is what happens when I try to buy a car

I need to buy a new car.  Mine is dead and has been sitting in the driveway for a couple of months.  T and I are sharing his car.  It is not an ideal situation, but I do not have the energy to devote to buying a new car.  In early December I tried to throw myself into a car buying situation, assuming I would sink or swim.  I sunk.  I applied for a loan and it was approved.  Then what?  Where's the car?  You mean I have to actually do some work to find one?  Do I have to interact with salespeople?  Do I have to talk to strangers?  NOOOOO.  The loan officers were worried.  They could not understand why I was not buying. They called and left urgent messages.  I would not pick up the phone.  I was filled with dread whenever the phone rang or I received an email.  Finally they offered me the services of a car concierge who works for the credit union to make things easy for buyers.  I would not answer his phone calls, either. 

In fact, I ignore most phone calls because Florida is filled with scam artists who sit around every day calling retired people trying to trick us out of our money.  We actually started getting these con-calls the same day we got our land line telephone installed, so I can only imagine the cable company providing our phone service is routinely selling new phone listings to scumbags.  Nice.  Consequently, I stopped answering the phone months ago.  Sometimes, when I am in just the right mood, I pick up and tell whoever is at the other end of the line to take my name off their list and never call me again.  I use my best cold-hearted bitch voice.  That is always kind of fun.  

This aversive reaction is a direct result of working in an office for so many years.  I OD’d on communication a long time ago.  So what if I have been retired for over a year now.  I still have not recovered.  I may never recover.  It is the principle of the thing.  The thought of having to do anything that resembles office work (including answering the damn phone) makes me want to run off screaming into the night. Every time the phone rings my stomach turns.  If I have an administrative, real-life issue I must suffer through, or a deadline I have to meet, I freak out.  I ignore it, procrastinate; all the things I could NEVER do when I had a job.  It makes me feel so good to ignore things.  By the way, if you want to reach me, call my land line phone or email me.  If I am home and I can see it is you, I will pick up the phone or call you back.  Do not even think about calling me on my cell phone.  The ringer is turned off and I rarely turn the cell phone on unless I am stuck waiting in a doctor’s office and need to play solitaire.  My cell phone is purely an ornamental status symbol.

Getting back to my car buying experience, I finally emailed (note I did not use the phone) the bank, car concierge, and salespeople and let them know I changed my mind.  I said I would reapply in the New Year when “things settled down for me.”  Ha!  I guess I showed them!  Maybe if I put this off long enough T will give me his car and then he will go through the effort of buying a new car for himself.  It is so crazy it might work.

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.