Why have a blog if you can’t use it to openly discuss the potential manifestation of your absolute worst fear? 😺 Yeah. This is the blog post I really avoided writing and
here it is.
In this post I’ve tried to bedazzle my worst fear and all my fretting and freaking out with pictures and humor and
well, it’s more of a novella than a blog post so fair warning. I broke it up into sections to help with the rambling flow.
So pop the popcorn, pour the wine.
Or go read something shorter or watch something less indulgent and freaky.
Like American Horror Story.
What the Hell Is Wrong
A few weeks ago, I received the results of genetic testing that had been ordered by my neurologist.
The genetics lab had unfortunately concluded it was highly probable I’d experience early-onset dementia (FTD) or amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease due the presence of a certain chromosome and how it repeated… over a hundred times.
Symptoms of both degenerative diseases generally start to kick in around age 45.
And I am 41.
The only mature way to respond to this kind of news is:
“It isn’t certain. Doctors are often wrong.”
This is very true. I’ve had my closest family members defy fatal diagnoses and go on to live as “miracles”
at least, for a little while.
In any case, it’s in my blood to defy doctors and whatever scientific non-magical nonsense they believe.
At the same time, what if medical science is right about this prediction and I’m going to lose both my mind and body and, yet, kind of just still hang around as a pile of flesh substance?
Sadly and happily, science generally gets things right.
It’s not as trustworthy as math but it’s up there.
If only to stop talking about statistically-determined degeneration, I’d like to take a moment to appreciate math.
Math doesn’t care if you’re good at it or not. I’m not awesome at math.
But it doesn’t matter.
Math just keeps rolling on being math.
How nice it must be to be indisputable and perfectly balanced.
Helpless Witness and Police Involvement
I know FTD well, as my mom was affected by it as early as 1994, when I was in junior high.
At the time, in the 1990s, the doctors didn’t realize her symptoms were being caused by physiological brain atrophy in her frontal lobe. Rather, they thought she had an atypical form of schizophrenia because it had manifested much later than such symptoms usually kick in.
Cases of schizophrenia generally manifest before the age of 30.
Consequently, due to both her extremely bizarre shift in behavior and the fact that no one could seemingly do anything to help, by the time I was age 23, I found myself in a courtroom, testifying against my beloved mother in a sanity hearing as she had been arrested for “driving too slowly” on a highway and she had “not responded to officers”.
WE GOT HER.
My mom was now in state custody. And it was a closed-court hearing, at my mother’s request. And, because my mom was in state custody, my dad and I could finally use the horrible circumstances to try to get her help.
I was the only witness for the prosecution.
And it all felt terrible.
It was heartbreaking because, up until that point, I had been the only one my mom considered to not have betrayed her and I certainly lost my status when I joined the dark side and testified against her.
But before and after it was heartbreaking it had been insanely frustrating.
As a teenager, I had tried and tried and tried and tried and tried and tried and tried and tried ∞ to get my mother help.
The local small town police department had a file which was three inches thick, full of all the reports and notes they had received from the community regarding my mom’s behavior.
For example, she had become extremely paranoid and also kept returning to work at former workplaces.
Yet, the system is reactive and not pro-active.
So my dad and I had to wait for something terrible to happen before we could get her help because
my mom didn’t want help.
It felt so insanely counter-intuitive to have to wait for something terrible to happen.
“Something terrible is what we’re trying to prevent,” I’d respond.
My logic and frustration probably inspired the local police to start a file folder on me.
For a period of time, it wasn’t quite clear who was going to be in state custody first…. me or Mom.
In any case, it was Mom and we were arguably, horrifically lucky when the prophesied terrible thing finally happened.
Having my mom’s car forcefully stopped on the highway by the local sheriff’s department, having her handcuffed and put into a jail cell, having her hear the sharp clang of the prison door which she had once confessed to me terrified her… all that was indeed “terrible”, but it was still
not as terrible as it could have been.
At the end of the hearing, the judge bought the proffered diagnosis of schizophrenia and deemed my mother mentally incompetent, sentencing her to two weeks in psychiatric care at the University of Wisconsin – Madison Hospital.
While my heart broke for the thousandth time when I saw my beautiful mom shuffling away in handcuffs and ankle cuffs, I also knew that there had been no other rational way to save her.
That was ridiculous but it was the way it felt.
Things had become quite dangerous and it was only a matter of time before she really hurt herself.
And I wasn’t quite ready to seek solutions from the realm of the irrational.
Not quite yet.
Processing, Hiding and Accepting the Terms
After my mom was put on court-ordered medication, I continued to feel terrible over my mom’s dramatic “transformation” and all that had happened, and spent my twenties feeling guilty for testifying against her and committing her,
and also terrified that I’d become schizophrenic like my poor mom.
As a result, since my mom started to become symptomatic in her thirties, I felt in a rush to accomplish everything I wanted to achieve before I reached age 30.
You know, before the walls started talking to me.
Therefore, I traveled and, simultaneously, accomplished as much as I could.
I did a cross-country road trip… twice. I slept in my car. I stayed in hostels. I lived in a different country. I attended nation-wide anti-war protests with diverse crowds of all ages. I touched the shoulders of Bob Dylan and the Dalai Llama. I turned 30 in motherflipping Paris which didn’t disappoint in any way which made it one of the only cognitively built-up things which hadn’t.
I then earned my PhD at age 30.
I had spent my twenties in academia, absorbing all the knowledge I could and trying to be as smart as I could in case I’d start to lose my mind later.
Because, if I did, if I really went insane, I’d ideally sound arguably well-read and intelligent, making a bid for “eccentric”, rambling to the walls, quoting Artaud and Bourdieu.
In short, I got “life” done when I could and made some semblance of a Dignity Plan for my survival if I got old.
Foiled! Mental Illness vs. Less Taboo Brain Sickness
As time went on, I found that I didn’t start to exhibit psychiatric symptoms as I had feared but, rather, my mom started to exhibit physical deterioration.
That was unexpected.
I had long imagined my mom would eventually move in with me as there was no reason a schizophrenic would not live a long life and she was ten years younger than my dad.
But when my mom started to have trouble maintaining balance and walking, while her speech started to become halted (long periods of silence) or rapid (she simply would not stop talking), it became clear that
these symptoms were not schizophrenia.
Schizophrenia is a mental illness which is exhibited through behavior and abnormal thinking and perception, and is not known to cause other visible physical symptoms.
So maybe my mom didn’t have an abnormal case of schizophrenia after all.
However, if schizophrenia wasn’t to blame… what was?
I didn’t find an answer to that question until I was back on American soil, working as an AmeriCorps VISTA with my favorite group of co-workers.
Within this group of colleagues, there were three VISTAs and I shared my mom’s surprising new symptoms with one of them…
and he told me how his own mom had died from “Pick’s Disease” when he was in grade school.
He also told me that my mom’s symptoms sounded like those his mom had displayed.
Boo to the infinity degree.
This new information changed everything. What if my mom had been misdiagnosed? What if the doctors were wrong and she had Pick’s Disease and was actively dying?
We are all actively dying, yes, I realize. But some of us have to consider planning a funeral if we want to feel responsible (and not dramatic) and most of us don’t have to consider doing that this week.
So my mom was perhaps actively dying.
After a Google search on work time, I discovered that the only way to diagnose Pick’s Disease (which is another term for early onset dementia or FTD) is by analyzing a CT scan of the brain.
Therefore, I then called my dad on work time and told him that Mom needed to get a CT because I believed she had Pick’s Disease.
Now a fortified researcher, I also emailed my dad articles I had found which further elaborated on the symptoms of this form of dementia.
And it turned out I was right.
Soon the neurologist, after reviewing my mother’s CT results, confirmed my mom had Pick’s Disease or, rather, frontotemporal degeneration, and then she gave my mom six months to live.
This was January 2012.
When I told my friend/fellow VISTA that they didn’t call it Pick’s Disease anymore, his face got emotional and told me they were wrong.
“It’s Pick’s Disease.”
It was. And the doctors were wrong.
My mom didn’t die in six months.
In fact, she didn’t die until June 2017. And, in between her diagnosis and her death, I lost my father, cousin and grandmother.
Meanwhile, I still wasn’t exhibiting psychiatric symptoms.
At least, not the ones I had anticipated.
Grief is a real trip.
“Dramatically Inhibited, But Still Here!”
My mom was awesome. After she got ill, people focused on her illness which sucks.
My mom was not her sickness.
My mom was fun, smart, caring, creative, maternal and lovely.
My mom attended college when I was in grade school.
She earned her degree in Education, became a certified primary school teacher, did her year of student teaching and then could not find a job as a teacher.
In fact, when I later told her I had been accepted into a graduate education program at age 23, after she had been released from the psychiatric ward after the sanity hearing where I had betrayed/helped her, she was disappointed and told me she was concerned I also would also not be able to find employment.
In response, I shook my head and said “I’m not studying to be a teacher, Mom. And I’m not you.”
At the same time, I wasn’t quite sure what I was studying to be.
An academic, I guess.
Like Indiana Jones.
By that point, I was really just trying to not get sick like her.
Yet, like my mom and as she feared, I have been unable to find stable employment.
Once I was offered the tenure track academic position I’d worked for in Scotland, I had to turn it down to return stateside so I could be closer to my parents who I then spent my thirties helping/caring for.
And, sadly, little has changed except now I’m old and an unemployed epileptic orphan who now has a probable slow death sentence where it’s possible I not only lose my mind shortly but I also lose my ability to operate my body independently.
This is a set-back because I had only been preparing to lose my mind.
As such, I won’t be able to babble philosophy and poetry at the walls as I had planned or sing as loudly and off-key as I do now while alone to the delight of our bad neighborhood because
I wouldn’t be able to talk or sing.
FTD and ALS take everything.
Except your soul.
So What Exactly Do Coping and Acceptance Look Like
Right. So I’ve been avoiding the genetic test results. Occupying myself with other activities that don’t pertain to doctors, reality or tests.
I spend a great deal of time alone, talking to myself and manufacturing day-to-day purpose.
Such as… going crazy with decorations for holidays.
It is a little unsettling how I’ve created a sea of only child “friends” (aka lamps, stuffed animals, sad dolls, chairs etc) to talk to.
All these little faces looking back at me.
But, until I again rejoin the human world, I’m going to continue to talk to objects.
Because being voiceless is a state I simply cannot return to.
However, Stephen Hawking has ALS and never shuts up, thanks to his speech device, and he certainly still has his mind.
So it seems I just have to somehow make some very important friends at tech companies.
That may not involve leaving the house!
If possible, if I was hooked up with Stephen Hawking’s speech device, I’d choose the British male voice who I long ago chose to give me driving directions and the such through my iPhone.
The other day, Phone was giving me driving directions to a familiar destination which was largely “straight ahead the whole way” and, on the way, he had a complete meltdown:
“PROCEED TO ROUTE! MAKE A U-TURN! MAKE A U-TURN! PROCEED TO ROUTE! (gargle)“
And I just quietly kept on driving straight until he composed himself.
Eventually, I asked him if he was okay.
He said he was, and thanked me for asking.
He would be my voice.
Making Plans for the Future, But the Most Terrible One in Particular
Before I lose it completely and get too caught up manufacturing safe interaction with invented characters, I feel I need to do less writing and more paid work.
The fact that my mom kept returning to her former workplaces after she got sick worries me immensely.
I really need a job.
After all, where will I return to trespass-haunt if I get sick?
If I don’t find work locally and since I feel the most conflict about not accepting the position at the University of Edinburgh and fulfilling my academic destiny, I may feel compelled to somehow catch an international flight to Scotland and then end up potentially blending in with the posh academics in Edinburgh or simply getting lost in the city closes where I would become just another ghost.
Or I could roam the hills and yell “My name is Hill!” at tourists.
Or maybe I could pretend to be a chair and stay in the city.
If I kept that routine up, I’d organically become part of the stupid Edinburgh Festival as it set up around me and maybe make a splash and eventually end up on Channel Four, absolutely bonkers but making money for the first time in my life.
In any case, what’s clear is how I have exciting/very dangerous options, even if the most feared future happens and history repeats itself.
The Inevitable Becoming
After my mom couldn’t find stable employment, she became very active in volunteering in the small town community in which I was raised.
For example, she was president-elect of the local chapter of the American Association of University Women. She won awards for her work.
She was the president of the local literacy council. She was in our church choir and also on the church flower committee. She even became a Ski-Wee downhill ski instructor.
She stayed busy.
She never gave up. She maintained responsibility which involved the outside world.
She never created a social group out of old Christmas creatures.
Or treated a stuffed dinosaur like a dog.
At the same time, I’m an only child which explains my attachment to inanimate objects.
And, arguably, a dinosaur who looks really excited to see you and who can’t die or shed and drool all over your furniture is far more practical than having an organic, living pet.
And, if spending a great deal of time alone, it’s rational to talk out loud and have conversations with myself because, as with anything, if you don’t use it, you lose it.
So I’m not bothered by my antics.
And I’m still not exhibiting the psychiatric symptoms as I’ve long feared.
I have spent the last three months freaking out about the faces in the windows but there truly have been men in all our windows for three months.
That paranoid feeling that someone is watching you and is conspiring to make your day less great is FULLY A REALITY HERE.
In any case, I cleared my thirties and, due to my age, I’m already certain I won’t suddenly be schizophrenic.
But the jury is out regarding whether or not I’ll get FTD like my mom… and, if getting out there and interacting with people didn’t help her prevent the onset of FTD, I’m not feeling particularly compelled to do work for free like she did.
Especially during a pandemic.
Meanwhile, people always tell me how I look just like my mom.
Last year, I spooked them when I entered homes at the non-plague-ridden holidays because they said it was just like my mom had walked into the room.
When I used to hear people remark on our resemblance and as I saw what was becoming of my mom while I was a teenager, I did all I could to not look like her in my twenties.
I cut off my hair and dyed it all kinds of different colors.
But now that I’ve let it grow long, years and years later, and I’ve allowed it to be my natural color, all the comments of me looking like the reincarnation of my mom have started up again.
I feel okay with that. I love my mom. She had been an amazing mother. I was and am honored that I cause other people to gasp because I look so much like her.
Besides, friends of parents love telling their kids how much they look like their parents. It doesn’t necessarily mean anything beyond “genetics are working”.
However, my mom’s frustration with not establishing a career haunted her after she became ill.
And the only time she felt at ease was in festive settings.
So I’m kind of thinking… forget jobs and my intense frustration, forget nuclear family-making and adopting children… just focus on parties.
If I’m turning into my mom, then perhaps this is what kind of atmosphere I should aspire to maintain.
After all, my mom had always loved to entertain; when she was organizing a social event or hosting a party is when she became really alive and authentically her.
And that’s one of the only things that didn’t change after she became ill.
The Party Life: Never Mind All Those Tragic Documentaries About Musicians and Celebrities
When I threw my dad a surprise 70th birthday party from Scotland and, despite my dad’s terror when he really started to suspect the surprise when he saw his brother’s truck in the parking lot, he had an amazing time.
All the old faces were there. His old baseball friends. People he hadn’t seen in years came.
My dad had shut out the world when my mom became ill. He stopped responding to calls and he stopped attending all the sports reunions.
So for my dad to see all his jock buddies again?
He was so happy.
And my mom magically became her old self again.
A close friend’s mom still seems stunned when she shares how my mother had turned to her at my dad’s surprise birthday party and casually said
“Oh hey Con!”
as she passed her to talk to another group.
By this point, my mom rarely spoke and, if she did, it was somewhat jarring.
However, at that simple party with all the old familiar faces, Connie says it was as if she had gone back in time as my mom was suddenly my mom again.
“Just the way she looked and the way she said it, Hilly. It just… “
While my mom had stopped being “who she was”,
that night she was back.
And this has left a mark on me.
What Doesn’t Kill You Makes You Weird at Parties
Therefore, as it is known I am statistically likely to suffer the same fate as my mom, I am making plans.
I need to somehow make it clear that, if I am lying mute and paralyzed in a hospital bed, I want to party.
I want friends to come and drink and tell stories and play music and carry on.
I do not want to be left alone, isolated and shunned.
This is a bit of a revelation to me because being left alone, isolated and shunned, had always been my plan.
I would never want to be helpless and a burden.
Or treated like I was stupid and invisible.
Or forced to endure whoever wanted to come and visit me, paralyzed and trapped inside myself, unable to escape them, while they then left all proud and feeling like such a good person for visiting the mute invalid.
David would never be a good bouncer. Even if I drafted a list of names, he wouldn’t enforce it if people not on the list came to visit.
It would be a short list. I’ve noticed that lots of people, good intentions aside, are not great around disabled people or around disabled people who didn’t used to be disabled.
It is a terrible situation so it’s not like I would hold it against people.
I just wouldn’t want to see the horror on their faces.
Therefore, my plan has always been to go live in the woods and do hard drugs I’ve never before done.
Hell, I’ve never even smoked cigarettes.
Yet, since we are having trouble moving from this apartment, I don’t see how I’m buying a second residence in a fictional woods where I can spiral into drugs and an extremely non-hygienic state with woodland friends.
Thus, my new plan is to be exceedingly shallow and social in good colorful company with giant margaritas wherever we end up living.
If I’m bedridden, I’d like the party to be brought to me.
However, I’m not sure how to logistically do this. Parties are great but there is a lot more to it when a mind and body can no longer function as they should.
I took care of my mom in her final years. I helped my dad until cancer took him, and then I took over my mom’s care.
I administered affairs and learned how to be a CNA and I also focused on providing my mom with a high quality of life.
And I don’t have a me to care for me
or a me to orchestrate the parties.
I’m childless and, besides, I would never want a child to witness any of this hypothetical torture and tragedy.
Perhaps I can get a Saint Bernard like Nana from the Disneyfied Peter Pan tale.
Nana was taking care of kids who weren’t able to stay hygienic and clean on their own so it always baffled me as to how a big dog changed diapers and the such but
Nana got it done.
I simply don’t want to end up in a nursing home or a group home.
But who the fuck does.
Endgame: Tomorrow Comes, Ready or Not
While my fate is not sealed in the same way no person’s fate is determined, I am only human and last week it all hit me.
No, it devoured me.
I recently had a MRI which showed brain lesions on my frontal lobe but not, specifically, degeneration.
At the same time, brain lesions aren’t awesome or a good sign.
Another gemstone piece of news I’ve learned this hellish year is that my brain produces an unbelievable, “unexpected” amount of abnormal electricity.
My brain allegedly produces so much electricity one mentally unbalanced neurologist felt it is killing me.
No, actually, his unethical, shitty healthcare was killing me.
Furthermore (bitch and moan), I’m very bothered with the now genuine possibility I’ll get FTD or ALS after already being cursed with motherflipping epilepsy which has already caused a great deal of drama, extensive damage and consistently threatens to finally kill me at any moment.
Anything could kill any of us at any moment but it’s different when you know your killer.
There’s a different dynamic and then there’s all that stress of waiting to be killed and then, when you finally are, your emotional state can be summarized as feeling just a little bit betrayed and also bored by the whole damned thing.
Yet, my habit of being excessively
electrified⚡️ all the time
could somehow work to my favor.
Maybe all my rogue brain electricity could prevent degeneration.
An area of my frontal lobe would start to atrophy and
THEN A LIGHTNING BOLT WOULD ZAP IT AND REIGNITE THE NEURONAL PATHWAYS
AND MY BRAIN ELECTRICITY WILL NEVER LET ME DIE AND I’LL BECOME AN ELECTRIFIED ZOMBIE!
In any case, if my brain electricity does not come through as my very own dark passenger,
I’m a planner.
So I want to feel like I have a solid “WORST FEAR COMING TRUE” plan in place.
Therefore, I’ll start interviewing Saint Bernards in 2021.
In the meantime, it’s fucking ✨Christmas ✨ (thanksgiving doesn’t exist to me #bethankfuleveryday), and I’ve got wine, candles, a roof over my head and the reality that music is medicine.
PMA ALL DAY.