I’ve had the honor and privilege to meet many fierce women who advocate on behalf of those struck by Stage IV metastatic breast cancer. If you’re fortunate enough to not be in or around this wonderful world of cancer, you may not even know about what Stages or Grades mean.
When it comes to cancer, your tumor and thus, your diagnosis is defined by the Stage or Grade. Basically, it defines EVERYTHING: whether you have cancer, or it’s benign; how serious your case is; what treatment options are available or on the flip-side, what treatment options aren’t available; etc. Grade IV or Stage IV is the highest, and unfortunately the worst type. Personally, both my brain tumors were Grade III, so that ain’t so good either!
A Little Bit About Stage IV Breast Cancer
Before I get into the piece I shared here by a fellow writer “living with cancer”, I want to briefly discuss a few things. The first is breast cancer.
People tend to believe that breast cancer is “curable” (I have a serious issue with the words “cure”/“curable” and cancer, but that’s me). Well, Stage IV metastatic breast cancer, which both men and women can get, is NOT. In fact, it is considered terminal. There is literally only one organization in the U.S. that exclusively funds Stage IV metastatic breast cancer (MBC) research. That is METAvivor. www.metavivor.org.
I have several friends who advocate for METAvivor so I wanted to give a shoutout to this fantastic organization.
A Little Bit About Cancer Funding
I don’t like statistics. I believe I am a person and not a number. Yet, when it comes to Stage IV or Grade IV cancers, the numbers are unfortunately grim. We all know breast cancer is hugely funded, yet only 2-3% of that funding goes to Stage IV research!! Nevertheless, approximately 40,000 people pass from Stage IV breast cancer a year.
In much the same way, the survival rates for brain cancer are extremely grim. When you look at all cancer types, brain cancer is one of the most underfunded, if not THE MOST underfunded cancer type. Yet, approximately 70,000 people pass from brain cancer a year. It is also now the leading cause of cancer-related deaths in children. See more information at the National Brain Tumor Society: www.braintumor.org
So if you’re reading this and wondering, “Why isn’t there more funding for these cancers?” Good question. However, the answer is just as grim as the statistics.
It really all comes down to Big Pharma and profits.
The rarer the cancer type, the less people who are or will be affected by it
The higher the mortality rate, the higher the likelihood a person will die from that cancer type
So less people, who are more likely to die = less profits for the pharmaceutical companies
This is a very sensitive subject for me. I want to scream from the rooftops:
Fund rare cancer research because my life and every person’s life who suffers from a rare cancer matters! We are worth investing into research and better treatment options!
“Cancer: When Hope Is All You Have” by Doug Sparling
I cringe when I hear the word. I especially cringe when I’m asked, always in a high-pitched, much too enthusiastic tone,
“So are you in remission now?”
I know and understand why people ask. I also know that by asking in a gleeful way, it’s because they hope the answer will be a resounding “Yes!”
Personally, the question only forces me to immediately assess, right there on-the-spot how I’m going to answer every single person who asks. Do they want the truth? Are they simply asking because it’s what society has dictated we do when we see a young adult, who doesn’t look “sick”? Also, do I really want to go into the ugly details of it all? How much time do I/we have?
Some potential answers to the remission question include:
Yes! I am cancer free for just about 5 years now!”
Yes! I am cancer free for just about 5 years now… However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred in less than a year. So technically the last tumor was removed in 2015. Since then I’ve had: 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy.”
Yes! I am cancer free for just about 5 years now! However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred less than a year later. So technically the last tumor was removed in 2015. Since then I’ve: Had 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy…I cannot say I will ever truly be “cancer free” because the cancer combined with the treatment changed almost every single aspect of my life. I will never be the same after cancer. Not only do I have a multitude of scars to prove it, but I will never again be free to do the things I loved like swim in the ocean, scuba dive, hike, or even run, which frankly I never loved but having the ability to catch that subway just about to pull away or make it to the bus stop just in time to grab that last bus – nope, can’t do it.
So, while it’s confirmed there are no cancerous cells in my body, do I feel like I am “in remission”? Absolutely not!
I can’t even begin to list all the ways cancer remains with me, but ya name it, and cancer has affected it.
For example, just the most mundane, everyday things:
Getting up in the morning – for me requires immediately putting on sneakers with my AFO, or leg brace, for balance and stability to get out of bed and walk around. Not just that, due to the issues with my left hand, it takes at least 3 tries to even get my sneakers tied. (I tried elastic laces and they would not support my AFO properly)
Getting dressed in the morning – for me, it’s a chore! I have to pull a Macgyver move to get my bra on properly. I constantly put clothes on backwards. Anything with a zipper is a true challenge.
Already what would’ve taken a fully-able-bodied person to do in 5-10 minutes has taken me at least 20.
Looking in the mirror– I must mention that every time I look in a mirror, I’m reminded of cancer. I have a slight eye droop that isn’t even noticeable to others. I see it though! About 1/3 of my scalp is a graft from my stomach so I’m completely bald there.
During the last few surgeries: 1. A piece of skull was removed, so my skull has a noticeable divot. 2. The shunt that was implanted during my last surgery creates a noticeable bump towards the front of my head. Thank god I still have lots of hair and fantastic hair pieces!
Then, because I’m so thin, I can actually see the shunt catheter, which runs from my brain down near my heart and into my abdominal area. I have a massive scar from the skin graft running down my entire abdomen. Plus, now I’ve got two new scars from the laparoscopic surgery to insert that catheter into my stomach. Yay!Oh and my bellybutton is about 6 inches from where it should be.
Of course, all of this is hidden away underneath my clothes, but I have to look at it all EVERY SINGLE DAY and frankly, I hate it. I cannot embrace these scars, like so many survivors do. To me, they’re just constantly reminding me of the trauma.
Showering – I have to use a shower chair and utilize grab bars to get in and out of the bath or shower. I can’t get my left arm up high enough to use my left hand to wash my hair. So I have to use just one hand to scrub in the shampoo and conditioner. It’s also difficult to use that left hand to squeeze the bottles, apply shower gel, etc.
For whatever reason, hot water and steam make me extremely light-headed and dehydrated. So I always need a glass of water nearby, the door must be open to let the steam out and I can typically only shower at night because it makes me extremely tired and/or weak. Again, due to the problems with my left hand, I can never get the towel wrapped around me. So, I have to towel-off in the bathroom and put on a robe or my pjs.
This whole process takes at least 30 minutes, while an able-bodied person could be done in 5-10 minutes.
Now, those few examples are just a taste, a sprinkling of what cancer has done to me physically, mentally and emotionally.
I love that other survivors can embrace the remission word, and I recognize the power that comes with the ability to say, “I’m in remission.” That’s just not the case for me.
Further, I wish I could say, “Cancer doesn’t define me!” like so many other survivors. However, for me cancer is and will always be present despite the fact that my physical body is “cancer free”.
Cancer is and will always be a part of me. It is a crucial piece of who I am today and who I will be in the future.
Plus, cancer will forever lurk in the darkest corners of my mind. Unless there’s some magical potion we discover one day, I will forever have to acknowledge/be aware that a tumor could indeed return at any time. It’s not something I dwell on, but shall I say, “it’s the nature of the beast.” Cancer can and does come back. I’ve already experienced a recurrence. So, I’m literally living proof of this awful truth.
The quote pictured at the top of this Post from ANITA MOORJANI on remission speaks to how I’ve internalized cancer in my life. Although I’ll never be able to say, “I’m done with cancer” I have indeed turned it into my “mission”. Hence, why I began writing this Blog, am working towards publishing articles on my experience, and ultimately a book.
Cancer also led me to finally find my passion working with various nonprofits to raise awareness about cancer in general, but mostly awareness about brain cancer; to serve as a patient advocate with the National Brain Tumor Society; and, to constantly fundraise for more research, treatment options and Dear Lord please, ultimately a cure!
Yes, it took two bouts of brain cancer to find it, but I found my passion-my mission! While every single day is a new challenge, every single day is also an opportunity to work on myself.
So, I believe I’ve found a new perspective on “remission”. It’s my mission.
To Learn more about ANITA MOORJANI, go to her website at https://anitamoorjani.com/. She has a fascinating story. In short, after four years of battling cancer, she went into a coma. Her husband was told:
“There’s nothing we can do for your wife, Mr. Moorjani. Her organs have already shut down. Her tumors have grown to the size of lemons throughout her lymphatic system, from the base of her skull to below her abdomen. Her brain is filled with fluid, as are her lungs. And as you can see, her skin has developed lesions that are weeping with toxins. She won’t even make it through the night,” the doctor told my husband, Danny.
Anita, describes what occurred in the following hours, days and weeks. She had a Near Death Experience (NDE) and details how she chose to return to her body to spread her message-her mission! Obviously, she came out of the coma and left the hospital 5 weeks later with no evidence of cancer anywhere in her body!
To Learn more about the National Brain Tumor Society go to their website: www.braintumor.org
Again, this Blog was never intended to address political issues. Rather, I created it to document my struggle through brain cancer. Yes, I always planned to include motivational pieces, essays on facing the “beast” that is cancer like struggling with fear and pain, and so forth.
I NEVER thought I’d be writing about a new civil rights movement, police brutality and death – not because of a physical disease, but because of the color of one’s skin.
I certainly NEVER thought I’d have to write about living through a worldwide pandemic that has now killed over 500,000 people and infected at least10 million people! 🤯🤯🤯 Um, it ain’t a hoax people and it ain’t going away!
If you’ve been following my series on the disaster we’re all living through, “WHAT CENTURY IS THIS?” in each Section, I’ve touched on a lot of hot-button issues.
In conjunction with my series, I truly felt compelled to write about a few more recent incidents. Sadly, I think they’ll just keep happening, or past murders will continue to come into the limelight. I pray this violence ends soon and that better days are a ‘comin. I also pray that the families of loved ones who were murdered by the police find peace, and are compensated for these wrongful deaths.
I HAVE TO ASK, IN THE INFAMOUS WORDS OF JOHN LENNON, WHY CANT WE ALL
“JUST GIVE PEACE A CHANCE”?
A Little Bit About My AntiestablishmentAttitude
Before I get into these most recent incidents, I’ll give you a lil background about my antiestablishment attitude and “inner hippie chick”.
I was raised Roman Catholic, Yes. I suffered through Catholic school literally my entire life! From grammar school, to high school then onto college and even law school-they were ALL Catholic. Yet, in high school I refused to be Confirmed because it is literally the sacrament where you are supposed to be confirming that you want to remain a devout Catholic. As a baby, you’re baptized but of course, it’s not your “choice”-it’s your parent’s choice. I mean, you’re a baby. All you do is cry, sleep, puke and poop. (Are you comforted that I’m not a mother? 😂)
By high school, I had already decided I did not believe in the institution of the Catholic Church. Thus, why would I get Confirmed? So I didn’t.
After that decision, my mother pretty much refused to speak to me until I graduated high school. Yet, my parents didn’t go to Church. To this day, I’m still scarred from my grammar school nuns. It probably also goes without saying, but I am truly sickened by the abuse both priests and nuns afflicted upon children (many nuns were abused by priests as well). The Church knew of this systemic abuse and did absolutely nothing except move these abusers to other parishes. Then, the abuse continued and they’d simply be placed into yet another parish.
Side note: If this history interests you, look into Ireland’s Magdalene Laundries, also known as Magdalene asylums. I warn you though. It’s beyond disturbing, as in you may not sleep afterwards. The “laundries” were run by the Catholic Church, but were also supported by the government and high-powered businesses all throughout Ireland. Specifically, the laundries in Galway and one run by Bon Secours nuns in Tuam have a horrid history. Again, be warned! The last “laundry” only closed in Dublin in the 1990s. These places were not only allowed to run, but were in fact supported by an institution that was considered ALL POWERFUL (i.e. the Church) controlled by the patriarchy that existed throughout the country. People knew of the atrocities committed within the laundries, but you could never speak ill of the Church, until very recently.
My high school was quite a prestigious, all-girls prep school run by nuns, although most teachers were thankfully NOT nuns. Nevertheless, we had to take umpteen religion classes, attend Church processions in our auditorium and be “good Catholic girls” who didn’t wear their skirts too short (P.S. 90% of us did anyway), sign “Honor Codes” that we would not drink and/or use drugs (P.S. 90% of us did anyway) and all the other hypocritical B.S. they made us do.
I absolutely believe in God, angels, spirituality, the power of prayer, and that God has a purpose for all of us. However, personally I am staunchly opposed to the Catholic institution and its power. Now that’s just me.
Overall, most religions’ basic principles are the same:
Be kind to your fellow man, or “do unto others as you would have them do unto you”
We are all one, all children of “God” (however you define that even if it’s just “Spirit”). Thus, we are all equal
Care for the poor, the sick, those in need, etc.
Unless you believe in some extreme, fundamental principle and claim it’s “religion”, we all know that we should not murder or harm our fellow man
So, when it comes to religion, I simply say I’m “spiritual. I also have an “inner hippie chick” side. I look back at movies and documentaries from the 60’s and still can’t grasp why hippies were so deeply frowned upon/hated. I listen to tons of classic rock music. I just returned from 2 weeks in Saugerties, NY where the actual Woodstock Festival took place. Although, I love the town of Woodstock as well. My idols include Stevie Nicks and Gloria Steinem, who I actually met at an event! (Swoon)
The true hippie stood for peace, love, and equality. They were involved in the civil rights movement, the women’s rights movement, and stood alongside the original Black Panthers. They protested against the Vietnam War. We know the atrocities committed during that War and those long haired, “groovy” kids were right! We should have never been involved in that War.
Crazy Side Note: My FIL is one of the best men I’ve ever known. He came over to the States from Ireland in the 60’s. His aunt, who put him up, forced him to register his name and address at the post office. Why? I have no idea. That man wasn’t even an American citizen, but got drafted and went to Vietnam!! Personally, I would have been on the next plane back to Ireland. Hell, I would have tried to swim back!! No. Instead he fought for a country that was not even his own, won a Purple Heart amongst many other medals of honor.
So, the hippies of the 60’s stood against the “establishment”, which doesn’t seem to have changed much since then!
Recent, Disturbing Incidents of Continued Violence
So basically looking back on the late 1960s and into the 70’s, people of color alongside white people protested in the streets over MANY OF THE SAME ISSUES AS THEY ARE TODAY!
After decades upon decades of protests, marches, sit-ins, Walk-outs, speeches, efforts to increase minority and women’s rights, efforts to increase the number of minorities and women in government, and on and on… people who stand-up for equality and peace are continuously degraded and out-right terrorized!
I simply cannot address all of the violence that’s been reported recently. I’d never leave my computer. However, I did want to highlight a few.
The Louisville Incident
Protesters, who have demanded the officers involved in Breonna Taylor’s death be charged, had created what looked like their own tent city in Jefferson Square Park in downtown Louisville.
Overall, things were peaceful in the area until around 9:00 pm Saturday, June 27th.
A fellow “protester” Steven Nelson Lopez is currently in police custody [at the time I’m writing this] because at around 9 that night, he began shooting a firearm into the large crowd at the park. Apparently, bystanders returned fire in self-defense.
Tyler Charles Gerth, (27) was shot and killed. He was a University of Kentucky graduate, and a “budding photographer”. He was also known and active in the protest movement. What a devastating loss to this Movement.
Lopez was shot in the leg during the incident, and has been charged with murder. He had been camping at Jefferson Square for some time, but reports indicate he’d been asked to leave earlier in the day by other protesters for his “disruptive behavior”. He was also arrested twice in the last two weeks.
So, what had been a peaceful place for protesters turned into mayhem that night.
Murder of Oluwatoyin Salau
Oluwatoyin Salau was a 19-year-old Black Lives Matter activist. She disappeared in June. She sent a series of Tweets describing a sexual assault. A desperate search for her began. Sadly, she was found dead in Tallahassee, FL. Uhh, Florida!
Aaron Glee Jr., apparently confessed and was charged with her murder and kidnapping, as well as another woman.
Police admit Ms. Salau contacted them to report the assault she described in her Tweets, but they do not believe there was a connection between the assault and her killing.
Right now, our lives matter, black lives matter. We are doing this for our brothers and our sisters who got shot but we are doing this for every black person. I am profiled whether I like it or not.
Organizers in Tallahassee spoke about “how powerful her words were, how motivated she was to be more involved in the movement and share that activism with those around her.” What another devastating loss to this Movement.
Murder of Elijah McClainand Violence At a Peaceful Vigil In His Honor
On June 27th, hundreds gathered in Aurora, Colorado, to protest the death of Elijah McClain, a 23-year-old black man who was murdered by Aurora police back in 2019. To understand why his death is coming to light now, we must understand who this young man was to so many.
Mr. McClain was a massage therapist who loved animals. He taught himself to play the guitar and the violin. That is NO easy task! He would actually spend lunch breaks at shelters playing the violin for stray cats and dogs because he believed it helped soothe them. He liked to dance. He was a vegetarian. He was a son and a brother.
Some of his friends and teachers said, “Elijah was a shining star.” He was a person, “who would actually make humanity better.” Another friend said, “He was just welcoming and loving and kindness.”
He was 5 feet 6 inches and weighed 140 pounds at the time of his death.
Can you think of a more peaceful soul?
To understand why people are demanding justice, you unfortunately must understand how he was killed.
Elijah McClain’s Murder
All of these murders are vicious, unwarranted and the police who committed them should be held accountable! Elijah’s murder seems like a pure punch to the gut as I read more and more about it. So, as I’m writing this, I am shedding ugly, ugly tears, asking “Why, God? Why?”
Back to the point… Mr. McClain was walking home from a convenience store on August 24, 2019. Someone called 911, saying he “looked sketchy”, wearing a ski mask and waving his arms around. He was anemic so he would get cold easily. Hence, why he wore a ski mask in August.
When police arrived, they immediately tried to handcuff him. However, there was a struggle. Elijah stated that he did not need to stop walking home, when ordered by one officer. One officer responded that he had a right to stop Mr. McClain for looking suspicious, and grabbed him by the arms. Another officer approached and Mr. McClain said, “I am an introvert, please respect the boundaries that I am speaking. Leave me alone.” He was told to “stop resisting” when he put his arms up to his chest and to “stop tensing up.” The body cam footage shows Mr. McClain pleading with the officers to let go of him, and trying to get out of their grip. The officers thew him to the ground and used a carotid hold, which restricts blood to the brain to render someone unconscious.
I don’t think it’s any surprise ALL THREE OFFICERS’ BODY CAMS “FELL OFF” during this part of the encounter!
While detained and on the ground, Elijah vomited several times. He actually apologized, saying, “I’m sorry, I wasn’t trying to do that, I can’t breathe correctly.” Mr. McClain had chronic asthma.
At one point, an officer said, he would use his dog on him if he did not “stop messing around.”
After approximately 15 minutes, EMTs arrived and injected him with ketamine, a powerful sedative.
My father is a veterinarian and ketamine is used to sedate animals! You have to be very careful with animals and injecting the drug based upon the weight and any medical condition that animal may have.
I was not even AWARE EMTs used ketamine on people! In the body camera footage, one officer said that fellow officers had “put him out” with a carotid hold twice, “at least once successfully,” meaning Mr. McClain had already lost consciousness! So why the need to sedate him?
Mr. McClain went into cardiac arrest on the way to the hospital, passing away several days later.
An autopsy report by the Adams County coroner said that the cause of death was “undetermined,” and that it could have been a result of natural causes, a homicide related to the carotid hold, or an accident…. The 3 officers remain on the force and no charges were brought against them. I’ll just allow my rage to sit here with this utter B.S.
More Atrocious Police Violence At a Peaceful Vigil In Elijah’s Honor
Now, back to the fantastic year of 2020… On June 27th, thousands marched to honor Elijah and to demand justice in his name.
There were speeches outside the Aurora Municipal Building and protesters then held a vigil for Elijah with a violin performance, as he had been an avid, talented violinist. The protest was organized by students from Denver Public Schools and Aurora Public Schools. Lynnsie Holloway, a 17-year-old Black student from Denver East High School, said that she and the other students joined together because they were “upset by the lack of attention McClain’s death has received.”
Many also gathered outside the Aurora Police Department. However, that was a different group than those at the vigil.
So, at this beautiful, peaceful vigil organized by students, filled with music… the “Storm Troopers” arrived!
While the music was still playing, storms of police marching shoulder-to-shoulder in full riot gear surrounded the crowd. They began pepper-spraying people and using batons to push the crowds trying to flee. Police also attempted to make arrests. They claimed they were trying to get the crowd to move off the grass into a parking lot, utilizing bull-horns and firing warning shots into the air.
At the very least, the “carotid hold” the chokehold used on Elijah, has now been banned in Aurora, but only in the past few weeks. Prosecutors will also reexamine the case to see if charges should be brought against the 3 officers involved.
SO AGAIN, I HAVE TO ASK, WHY CANTWE JUST GIVE PEACE A F—-ING CHANCE?
I MAY HAVE UNDERGONE 7 BRAIN SURGERIES AND STILL COGNITIVELY ALRIGHT FOR THE MOST PART, BUT I CANNOT COMPREHEND THE WORLD WE ARE LIVING IN RIGHT NOW
As I stated in the prior Sections of this series, when I originally thought of this Post, I had a very basic outline in this lil ol’ brain of mine. Yet, as I began putting “paper to pen” shall we say, I never realized how many of my ideas tied-in together in such detail. So, what was intended to be a single Post became two and then three. Part Three then became a series all touching on different aspects of the Black Lives Matter Movement.
I’m not going to delve as deep in this Section because it doesn’t require too much analysis. What is transpiring is just ALL wrong. Here, I wanted to round out this discussion starting with the looting and rioting that is not a part of this Movement. Although I’m sure if you’re a Fox News enthusiast, it’s all you’ve seen. (I am who I am, and Fox News is blocked on my television. Sorry. Not Sorry). I believe it’s crucial to point out the Black Lives Matter Movement’s key principles though because they are completely antithetic to this vandalism.
You also cannot address the looting without getting political, and that’s unfortunate because this Blog was never ever intended to be political. Yet, I never thought I’d be seeing what I see in the year 2020 either.
Finally, I have to address the right-wingers, who have taken it upon themselves to “rise up” purposely to intimidate, threaten and assault marchers. Again, this Movement is about equality for all marginalized people and not just a black liberation movement. Understandably, the focus is on people of color. However, this is our generation’s civil rights movement. In 2020, we should not need one, but racism remains alive and well here in ‘Merica. Yet, while young black children are groped and pepper-sprayed, needing milk poured on top of them to get the sting out (see photos in my Part 3.03 Post) while rallying against police brutality and unwarranted deaths, white people storm State Capital Buildings demanding freedom to get haircuts, Yes, haircuts, with little to no repercussions.
Looting and Rioting
An estimated 450 businesses across New York City were vandalized and in some cases looted in late May and early June, according to the City’s Department of Small Business.
The Department is still evaluating the damage and doesn’t yet have an estimate for the total cost. Demonstrations sparked by the police killing of George Floyd in Minneapolis have been largely peaceful, but looting followed early protests in several cities, including New York.
My prior post in this series discussed police brutality in depth, yet even law enforcement believe that the vandalism, looting and destruction of property were caused by people “taking advantage of a situation to steal”. (See above citation for full quote).
Organizers from the Black Lives Movement condemn these actions. They are understandably angered by the destruction. These destructive actions go against the message of the Movement, as well as detract from its true message of justice, equality and peace.
In fact, the Movement’s website has various toolkits and resources on how to avoid and/or deescalate violence. They focus on “healing justice” and condemn destruction or harm.
Therefore, what you see below is NOT what the Black Lives Movement encourages, teaches, or supports.
Apparently, Monday June 1st was the worst day/night for looting in New York City with at least 2,330 stores burglarized.
This coincided with a curfew ordered by the NYC Mayor. The last time New York City was under curfew was in February 1945. Fiorello H. La Guardia was mayor and Franklin D. Roosevelt was president!
I certainly never heard of a curfew in New York City! We’re the City that never sleeps. Well now I know why-because the last one was 75 years ago!
I grew up in the suburbs of the City. NYC in the 80’s and early 90’s wasn’t exactly very safe. I remember distinctly being told as a kid to “never look anyone in the face” while walking around the City. I remember those grimy subway cars covered in spray paint. I was dragged around to every single damn tourist attraction when the Irish came over to the States.
Totally Unrelated Aside: 100% Truth. If you are from Ireland you will understand. Especially in the 80’s, but it still happens these days, if an Irish person knew you lived in the States, and they had ANY connection to you (like 6 degrees of Kevin Bacon connection) you’d no doubt one day get a knock on the door. It could be relatives or total strangers. They would simply be standing on your doorstep expecting you to “put them up”. You never knew how long they’d stay, I mean you never even knew they were coming! Nevertheless you’d welcome them in! Offer them a “cuppa tea” or a beer, and set up some makeshift bed. Since you lived close to New York, well you’d have to take them ‘round as well. So, I’ve gone to the Statue of Liberty, for example, umpteen times! Almost every time I was dragged along to show some Irish relative or total stranger, the Big Apple. Yet, my mother put the fear of God in me convinced that if I looked at a stranger in the eyes, we’d be robbed, stabbed, or I’d be kidnapped. Oh, the 80’s… such innocent times.
These are heavy topics so a little lighthearted storytelling is not a bad thing.
Okay, back to burning and pillaging…
According to NYPD officials, on June 1st the vast majority of the looting took place in downtown SoHo. Police were not stationed in the area and were essentially taken by surprise at the concentrated effort to break into the high-end stores in that neighborhood. For example, a 20-year-old female was arrested carrying $9,000 in handbags from Dior. Another man, 21 years old, was caught with stolen “red strappy women’s Gucci shoes,” yellow Dolce and Gabbana sneakers, GStar sneakers, Beats headphones, multiple single D&G sneakers and two wrenches. The majority of those arrested were in their 20s and some were not even from New York, but came from Virginia and the Carolinas – just to steal and cause chaos!
None of this acceptable. In a City already so badly hurting from this pandemic where people are seriously struggling to stay afloat, small businesses were also vandalized. It’s not right to steal anything, but Chanel will survive. The bodega owner who had all the money in his register taken and his windows smashed – he’s only going to hurt more.
Thankfully, in New York at least, these actions have fizzled out.
Now, I do not condone any of this, but at the same time I’ll admit:
If I were a person of color my rage over what has transpired during peaceful protests would have me wanting to smash some windows. TRUST – I’d definitely be throwing some dishes in my apartment at the very least!
This is Where I Get Political, So Feel Free to Disregard My Points Because Again, This Blog Is Not Meant to be Political, but Please, Please, Please Understand Why Politics Cannot Be Ignored
First, I’d like to begin with a general statement and/or personal belief.
Twitter should not be used by the President of one of the most developed nations in the world to address his/her stance on issues. Dear, God, please let there be a female U.S. President before I die!
If you cannot utter more than 280 characters in a coherent, logical manner in a formal address to the press and people of this country, then maybe you should not be President. If more than half of those 280 characters include 30 “Uh” and “Um” with you consistently repeating yourself (i.e. “We’re doing a great job, a great job, just the best job that’s ever been done ever in the history of the world”), you DEFINITELY should not be President.
NOW, onto this Twitter statement by the actual President of the United States. We all know this is not the first time Trump used “inflammatory language” tending towards inciting violence, though I don’t think he’d know what that phrase means anyway…
I imagine the scenario going something like this:
Trumps reads “inflammatory language”. He turns to some crony in the White House.
Trump: “What? I mean, language means words, right?”
Crony: “Yes, Mr. President.”
Trump: “And inflammatory, that’s like fire, right?
Crony: “Yes, Mr. President.”
Trump: “Can words go on fire?”
Crony: “No, Mr. President.
Trump: “FAKE NEWS! WHO SAID THIS, OBAMA? WELL, WE WILL TELL EVERYONE IT WAS OBAMA. NOW, GET ME STORMY ON THE PHONE.”
Crony: “Yes, Mr. President.”
Crony then tries to put his head into a hot oven, but it won’t fit.
OKAY, NOW SERIOUSLY, onto this Twitter statement: The phrase “when the looting starts, the shooting starts” was originally used in 1967 by Miami Police Chief Walter Headley during hearings about crime in that city, invoking angry reactions from civil rights leaders.
Headley “had a long history of bigotry against the black community,” said professor Clarence Lusane of Howard University. “The NAACP and other black organizations had for years complained about the treatment of the black community by Miami police. At this hearing, in discussing how he would deal with what he called crime and thugs and threats by young black people, he issued this statement that the reason Miami had not had any riots up to that point, was because of the message he had sent out that ‘when the looting starts, the shooting starts,‘ ” Lusane said… During the hearings, Headley further stated, “We don’t mind being accused of police brutality.”
Headley’s use of the phrase is thought to have contributed to intensified race riots, including one of the most serious ones in Miami in 1980, when a black man, Arthur McDuffie, was beaten into a coma by up to a dozen white Dade County police officers after he ran a red light on his motorcycle. He later died from his injuries.
Segregationist presidential candidate George Wallace also used the phrase during the 1968 campaign.
Though Trump claimed he did not know the origins of the phrase, he admitted he had heard it used before – yeah by racists!
If I went into detail about every ridiculous Tweet sent out by this megalomaniac, I’d never stop writing. However, the point is very simple:
WHEN YOU HAVE A PRESIDENT THAT DOES NOT CONDEMN, BUT INSTEAD APPROVES OF, UTILIZES (REMEMBER THAT WHOLE BIBLE PHOTO-OP) AND RALLIES BEHIND VIOLENCE USED AGAINST PROTESTORS OR ANYONE FOR THAT MATTER, YOU CREATE A SOCIETY WHERE VIOLENCE IS PERCEIVED TO BE ACCEPTABLE.
THIS LEADS TO MY FINAL POINT.
The Right-Wing Has Come Out In Full Force to Purposely Intimidate, Threaten and Assault Peaceful Black Lives Matter Protestors, Yet They Staged Protests Across the Country Over Their “Right” to a Haircut With Essentially No Police Repercussion
Let’s start with this beauty…
Kathy Bennett, sporting a camo Trump “Make America Great Again” cap, waved a Confederate flag at a Black Lives Matter protest in Branson, Missouri, while she praised the KKK and vowed to teach hate to her grandchildren. As she graciously stated, “I’m teaching them to fuckin’ hate all of you people”. No surprise, she spoke from the bed of a pick-up truck, waved the flag, raised her fist and said, “KKK belief!”
Beyond being simply atrocious is “KKK belief” even proper English, or a real thing? Obviously, the KKK exists, they have “beliefs” but I’m not sure this moron has any idea what she’s talking about.
These are mostly fully-armed men attending, or preparing for Black Lives Matter Movement rallies across the country. Why do they need guns? Why are some in balaclavas? Why do they look like they’re going to war, in full camo fatigues? Uh, you’re not “blending in”. We can see you.
If ya want to go to war, join the armed forces, guys!
Do you see any police surrounding them? Shooting them with “beanbag rounds”? Spraying them in the face with pepper spray? The answer is flat-out: No.
Do you know about “Operation Haircut”? Yes, Operation, as in the military sense of the word, and Haircut! While hundreds of people were dying daily in the NYC Metro Area from the Corona virus, these idiots staged massive protests so they could get haircuts…
Oh, and I guess they were also protesting their “Constitutional right” to play golf. I studied quite a lot of constitutional law, both in undergrad and law school. I don’t recall a single case where it was an absolute right to golf or get a haircut. Yet, what does the Constitution mean these days anyway?
Now, you see police officers in these photos. Are they armed, in riot gear, aiming guns at anyone? The answer is flat-out: No.
These protests were not just held in city streets. They actually swarmed State Capital buildings, like in Michigan, ARMED NONETHELESS! (pictured below)
Let’s be honest… the guy on the left looks like he hasn’t had a haircut or even a shower in quite a while. Not to mention, he’s practically bald. By the way, his name is Brian Cash, and he described his experience at the protest as “awesome”. Naturally.
The guy on the right looks insane, but he isn’t exactly bordering on the Chewbacca look.
So, it’s very clear that protesting “while white” is very, very different to protesting “while black.” If you cannot see the difference then you may need to have your eyes, and probably head, examined.
Yet, an old, sort-of white/orange man sits in the White House tweeting away hate speech towards Black Lives Matter protestors, while armed white men scream and push police all in the name of the new “haircut rights movement”.
Tell me: Who looks more peaceful? Who would you feel safer standing with?
The group fighting for equal rights, for people of color to be seen as human beings, for equal justice?
The guys looking like they’re about to shoot up a State Capital Building, screaming in the face of police, armed – locked and loaded?
I MAY HAVE UNDERGONE 7 BRAIN SURGERIES AND STILL COGNITIVELY ALRIGHT FOR THE MOST PART, BUT I CANNOT COMPREHEND THE WORLD WE ARE LIVING IN RIGHT NOW
Get comfortable. Grab a glass of wine. Settle down before reading because this is gonna be a long one! It’a also not the most uplifting post, for sure.
1984 is my favorite book of all time. Even as a young teen, I read several George Orwell books. My father encouraged it. He told me they would help me understand the world, and society as a whole. My father is extremely intellectual, so while most girls my age were reading Nancy Drew books, I read Animal Farm and 1984. I was so obsessed with 1984 that I recall writing a book report on it, and buying the movie on VHS. Yes, I am a child of the 80’s and we watched movies on a VCR.
There’s some racy scenes in the novel and movie, beyond it being an incredibly sophisticated, dark and cynical view of what Orwell imagined the world would or could become. However, I was never censored from those things as a child. It’s very likely why I was always a rather cynical person even when I was young.
If you’ve never read 1984, I cannot decide if this is the greatest time, or worst possible time to delve in. I guess it depends on your anxiety level at this stage. If you have read it, you can breeze through the synopsis. However, it is critical to my point.
1984 is considered a “dystopian” novel. Hence, it will not make you feel all warm and fuzzy inside. Quite the opposite. It was written and published after WWII, while Orwell was dying from TB, living on a remote island after his first wife had died unexpectedly. So, obviously this was not the work of a happy man, but truly one of a tortured soul.
Again, if you’ve never read the novel it’s very hard to sum up in a brief paragraph. However, I’ll stick to the key points and how it relates to our current state of affairs as I see them.
First, the story is set in a world dominated by war, perpetual government surveillance that is both open and secretive (Big Brother is watching), propoganda and a totalitarian state. There are Thought Police that terrorize and persecute any individual/independent thinking, termed “thoughtcrime”. Thus, there is absolutely no freedom of speech or expression. As well, even perceived thoughts against the leader, Big Brother, and the government is strictly forbidden. Yet, the people are not even sure Big Brother actually exists. Although a face touted to be Big Brother is literally everywhere. His image is on posters, projected on screens at work and even inside each person’s home.
I’m going to make it a point to re-read the novel during what seems to be such an overtly insane time in history.
OUR CURRENT STATE OF AFFAIRS
These days, I constantly find myself asking:
What century is this?
Are we actually living out the clear warnings of what could happen if we become like sheep, and permit the rise of a true “Orwellian society”?
I won’t get too openly political in this blog. It’s not the place. However, there are indisputable facts that will likely NEVER be forgotten when we look back at this time in history.
LOOKING AT THE NUMBERS:
Now, the following may seem a bit tedious, but again, it’s KEY to my point and trust me, I will get there.
We are living through the worst pandemic the U.S. has ever seen.
We do not even know the exact death toll, but as of May 1, 2020 the estimated number stands at 135,000; In the area where I live, the number stands at over 30,000 in New York and over 10,000 in New Jersey
As of May 1, 2020 the estimated number of cases across the country stands at 1.8 million
We are now learning of cases spreading at alarming rates throughout Latin America, Africa, the Middle East and again in Asia at an estimated 100,000 per day
U.S. unemployment claims have now surpassed 40 million (this number doesn’t even account for those unentitled to unemployment benefits, i.e. undocumented workers; people who have recently started working, like recent graduates; and, people who have been fired for cause, whether that cause was valid or not)
Those are ALL staggering, frightening numbers! Yet, it’s difficult to grasp the true state of affairs just by reading numbers.
People have been living under quarantine restrictions for months now. Personally, besides the hospital and going to necessary doctors’ appointments, I’ve left my apartment maybe 3 times simply to go grocery shopping. People are in masks and wearing surgical gloves. We are told to stand 6-feet apart from others in public. New York’s formerly bustling streets are ghost towns… or were until several days ago. I’ll get to that.
HOWEVER COULD THIS ALL HAVE BEEN AVOIDED, OR AT LEAST CURTAILED?
The World Health Organization (“WHO”) announced as of January 23, 2020:
“new epidemiological information” from Chinese authorities revealed an increase in the number of cases, of suspected cases, of affected provinces, and the proportion of deaths in currently reported cases of the novel Corona virus (now, let’s be honest – the Chinese government is not exactly known for its open dialogue and expression… Ahem, 1984‘s entire premise)
It was informed about the spread of the virus now in Japan, Republic of Korea, and Thailand, and that one new possible case had been identified in Singapore (clearly the virus was quickly spreading)
“Human-to-human transmission” was occurring
Of confirmed cases, 25% were reported to be severe
It gave China very explicit directives on various measures to attempt to contain the spread of the virus
However, ALL OTHER COUNTRIES were warned that cases could appear anywhere
So, on January 23, 2020, the WHO concluded:
Thus, all countries should be prepared for containment, including active surveillance, early detection, isolation and case management, contact tracing and prevention of onward spread of 2019-nCoV infection, and to share full data with WHO
New York City reported its first confirmed case of the virus on March 1, 2020. However, not a single restriction had been put into place at that point, more than a month after the “WHO’s” warnings. Further, not even one single testing site was available.
Just 5 days later, on March 6, 202035 cases were reportedly linked to just one man in Westchester County, a suburb of NYC where many live, but work in the City. Only then did officials begin to discuss quarantines, BUT only if a person believed they were in contact with that man or knew they had been in contact with someone who tested positive.
Finally, on March 7, 2020 Governor Cuomo declared a state of emergency for New Yorkwith 89 confirmed cases throughout the State. Following suit, New Jersey Governor Murphy declared a state of emergency with 11 cases. Yet still, no testing sites were available. Instead, people were flooding into hospitals in droves.
By March 10, 2020Governor Cuomo deployed the National Guard to a Health Department command post in Westchester County, setting up a satellite testing facility and naming a one-mile, two-week containment area but just in one town, New Rochelle, where there was a clear cluster of cases linked to that one man from that County.
2 days later, on March 12, 2020 NYC Mayor de Blasio declared a state of emergency for the City, stating they projected there would be at least 1,000 cases by the following week. Yet STILL, no testing sites were available.
Then, one day later on Friday the 13th (figures), several specialized schools in New York announced they would close temporarily, and New Jersey Governor Murphy announced that positive cases in the state reached 50. He also said it was inevitable that all NJ schools would close for the remainder of the year, but did not close them.
March 14, 2020marked the announcement by Governor Cuomoof the 1st two virus-related deaths in NY. Yet, in both cases officials were keen to point out these people had severe underlying conditions.
March 16, 2020 was a significant turning point in the NYC Metro area.
By that time there were over 1,000 known positive cases in the tri-state area
Due to the lack of response by the federal government, all 3 Governors of NY, NJ and Connecticut announced a tri-state effort to curtail the virus spread and ordered:
gyms and casinos would close March 16 at 8 p.m. until further notice;
bars and restaurants would close for sit-down service and would only be open for take-out delivery starting at 8 p.m. until further notice; and
gatherings of more than 50 people were banned until further notice
New Jersey schools would close March 18th for “at least two weeks”. Also, all non-essential retail, recreational & entertainment businesses were to close on the 16th after 8 p.m.
FINALLY, Governor Cuomo planned to open drive-thru testing sites in Long Island, Staten Island and Rockland County. NYC Mayor de Blasio ordered 5 drive-thru testing sites in the City (yet, the vast majority of NYC residents either don’t drive or own cars…)
The NYC St. Patrick’s Day Parade was cancelled for the 1st time since 1762. Also on March 17th, Mayor de Blasiowarned of a possible “shelter-in-place” order. By then, there were at least 900 confirmed, known cases in NYC alone. At that point 7 NBA players were also known to have the virus.
March 18th was a bleak day for New York. Governor Cuomo announced more than 1,000 new cases had been confirmed overnight! In NYC alone, cases had now risen to over 1,870! The Governor ordered that all businesses were required to have at least 50% of their employees work from home, excluding essential workers.
By just the next day, with significant testing now being conducted in New York, the States’ cases totaled at least 5,638 and 3,954 of those were in NYC. New Jersey confirmed another 300+ cases overnight!So, by March 19th, the tri-state had at least 6,538 known cases, 48 deaths that included 4 people in one NJ family!
Then by the following day, New York State confirmed 8,300 cases with at least 5,600 in NYC.
On March 21st, NYC saw 3,000 additional cases with Governor Cuomo attributing that to an increase in testing.
If that wasn’t shocking enough, NY State added 5,000more positive cases the next day, and NYC now had at least 10,764known cases with at least 1,800 people hospitalized and at least 450 in ICU. Further, by this point NYPD, FDNY, NYC’s subway and transit workers, prisoners and corrections officers in the City’s notorious Riker’s Island jail, and of course health care workers were all reporting significant numbers of cases.
Also on March 22nd, the President finally announced federal action to assist, New York, Washington and California (the 3 hardest hit states) and that the National Guard would be sent to NY, as well as 1,000 medical beds
***NOW WE GET TO THE 2-MONTH MARK, AFTER THE “WHO” HAD MADE ITS ANNOUNCEMENT, WARNING OF THE VIRUS’POTENTIAL TO SPREAD AND HOW COUNTRIES SHOULD PREPARE***
– By March 23, 2020 –
Governor Cuomo mandated all New York hospitals to increase their capacity by at least 50 percent, although they should aim for 100 percent!
5,707 new cases had been reported, bringing the State’s total to 20,857, with the majority of the cases (12,305) in NYC. However, later that day the City added hundreds more cases, bringing the total to 13,119 — with the death toll in the five boroughs hitting triple-digits after climbing to 125 by the end of the day.
NJ announced 935 new cases, bringing that State’s total to 2,844 and 27 deaths.
Connecticut’s cases rose from 327 to 415. Two more people died in the state, bringing their total to 10.
The rest, they say is history… and not one the history books should ever look upon favorably, but rather with disgrace.
If this all doesn’t INFURIATE you, considering how many lives could have been saved, considering how early, simple precautions could have eliminated so much pain, considering the toll on our healthcare workers & essential workers, well then I have no words for you.
HOW THIS ALL RELATES TO ME, AS A BRAIN CANCER SURVIVOR, AND TO ALL THOSE WITH UNDERLYING CONDITIONS
How this applies to my personal life is startling when I look back. It almost leaves me speechless, but clearly I’ve got A LOT to say on the matter.
First, I underwent surgery January 17th. So, I was in ICU when the “WHO” made their recommendations. I doubt I would have even known of the warnings. Nevertheless, I was in a very critical recovery period from my 7th brain surgery.
From ICU, I went straight to acute rehab. I remained hospitalized until February 12th. So, officials knew the virus was out there. Cases of the virus had already been confirmed in Italy (or to be more frank-this wasn’t contained to Asian countries) and the numbers kept rising. At the time I was discharged, Italy was officially under a state of emergency. Yet, no one warned me to stay home, wear a mask or utilize any precautions.
TO BE CLEAR: I do not in any way blame my doctors for this. There were no guidelines in place. There were no tests available, to my knowledge anyway. I frankly don’t where the disconnect occurred, as I imagine hospitals and doctors follow the “WHO”. Yet, without governmental policies or procedures in place, what could have been done?
Moving on, I had been cooped up for nearly a month in the hospital, but came out feeling strong, resilient and ready to just get moving again! However, there were numerous post-op appointments and several appointments I had to make-up that I’d missed while in the hospital.
My first was an MRI and post-op appointment with my neurosurgeon, which was in the Main Hospital Building on February 26th. Now, my hospital is one of NYC’s largest and was frankly, bombarded by virus patients. Yet again, I really was not informed about the potential of the virus hitting us. There was so much rhetoric about how this was a “Chinese virus” and that it was no worse than the common flu. Yet, I was less than a month and a half out of major surgery, and had been living in a totally sterile environment in the hospital. In the streets and in the hospital buildings, NO ONE was wearing masks, practicing social distancing or in quarantine, from what I knew. So, I walked around the hospital and NYC freely.
Then, on March 6th, I landed in the E.R. I fell and hit my head so I was quite concerned about my poor brain. Was something wrong with the shunt? Was I suddenly declining again? Lucky for me, I texted my neurosurgeon and he had his resident take me back very quickly. I got an isolated room, but I noticed things seemed a bit strange in the triage areas. I’ve been to my share of E.R.s and they never look “normal”, but I remember saying to my husband that things looked really off. Now I can’t assume, but we know the virus hit NY well before that first case was announced March 1st. I shudder to think of that day, not just for my health but also my husband’s who being the wonderful man that he is also came to the E.R. Anyway, my CT was clear and I was discharged God knows how many hours later.
On March 9th, I had my outpatient PT and OT evaluations. I was so excited to get back to a regular workout schedule to continue getting stronger. Little did I know, I would not return!
As an aside, in that facility people tend to be immune-compromised. The cancer center is there. Plus, those undergoing PT & OT can be quite disabled because I treat on the brain injury floor.
Two days later, I had multiple appointments in different buildings of the hospital. Again, no one was wearing masks. I certainly wasn’t.
On the day I’d typically be celebrating my Irish heritage (and not by getting drunk and puking all over the streets, like people tend to do on St. Patrick’s Day) I marched instead into the Main Hospital Building on March 17th for an EEG and to see a general surgeon because I had serious digestive issues ever since the shunt surgery in January. At that point, the surgeon was in PPE but neither my husband nor I was instructed to wear a mask. If you look back at my timeline, by that point there were nearly 1,000 confirmed cases of the virus in NYC alone!Plus, to add fuel to the fire, 1,000 cases were then reported overnight!While the announcement had come on the 16th that drive-thru testing sites would be put in place, they weren’t set up the day I strolled into the hospital. So, where were people going if they suspected they had contracted the virus? The E.R. And where were they being treated? The Main Hospital Building!
I also have to admit that I “drank the Kool-Aide”. I believed people who told me this would just be like the flu. That this was America acting hysterical again, like when they warn of snow in winter… yeah, it’s winter and it snows in the Northeast. I made fun of people literally fighting over toilet paper.
I travel constantly so I never worried about Zika, Dengue fever or malaria. I was a scuba diver and wanted to dive with sharks and sting rays, and I did. I never had a fear of flying. I felt safer in a plane than in a car. That was all even before cancer. So, my MO was always, “You can’t live your life in fear”.
Well, I will tell you that after all I’ve learned I should have been scared to hell of this virus!
Where virus patients were kept in NYC. 1.) A navy vessel, the U.S.N.S Comfort, docked at a Manhattan pier March 30th. Originally, it was meant to relieve NYC hospitals overrun by virus patients and accept non-virus patients. After severe scrutiny, it chose to accept virus patients. However, the 1,000-bed hospital ship treated just 182 patients. 2.) A portion of the 68-bed field hospital, created to treat Covid-19 patients from the Mount Sinai hospital system located in Manhattan’s iconic Central Park. 3.) A “surge tent” at NY Presbyterian-Weill Cornell for patients with “mild respiratory illnesses”. 4.) Another iconic NYC space, the Jacob Javits Center was converted into a military-run field hospital
SO WHAT DOES ANY OF THIS HAVE TO DO WITH 1984?
It’s clear at least in my eyes, that vital information was kept from the general public by government officials, regardless of what party they belonged to.
It’s known that four U.S. senators sold off stocks after receiving sensitive briefings in late January about the emerging threat of the coronavirus, sparking concerns that they put safeguarding their private finances before their duty to protect public health.
Senator Richard Burr, a Republican from North Carolina, and Kelly Loeffler, a Republican from Georgia, both completed their sales at a time when the Trump administration and GOP leaders were downplaying the potential damage the virus might cause in the U.S. and before drastic stock-market plunges set off by the pandemic… Two other members of the Intelligence Committee, Senator Dianne Feinstein, a Democrat from California, and Senator James Inhofe, an Oklahoma Republican, also sold stock after the briefings, according to financial records.
Burr is Chairman of the Senate Intelligence Committee and receives frequent briefings about threats facing the country. Loeffler sits on the Health Committee and is married to the chairman of the New York Stock Exchange, Jeffrey Sprecher. Huh, convenient!
Besides selling shares for millions of dollars, we know high-ranking officials in our government:
Were briefed as early as JANUARY of the threat the virus posed
We know of at least these 4 Senators (and I don’t doubt there’s many others) who made significant monetary gains from that information all while us-the people they swore to serve and represent-suffered and died excruciating deaths! While the economy imploded. While millions of hardworking Americans lost jobs. While invaluable doctors and nurses lost their lives by simply trying to save the lives of others. While families struggled quarantined in their homes for months, and still are! While we “the people” were uninformed and frankly misled to believe this virus would not affect us.
Frankly, it disgusts me that our officials were briefed in January yet NOTHING WAS DONE TO PROTECT US.
I very easily could’ve contracted the virus and given my condition at the time, it could’ve been extremely bad. I could have wound up on some Navy ship docked where I could see it from my home. Yet somehow by the Grace of God, I didn’t. My fellow cancer survivors and those undergoing treatment could have just as easily gotten very sick.
Our government made a strategic decision to hide vital information from its people, information that was literally a matter of life and death. Not only that, despite this knowledge they failed to put a single precaution, restriction and/or regulation in place to protect its people. Yes, that generally falls within the purview of the States. That’s not the point though.
So, what’s our current state of affairs got to do with Orwell’s bleak vision of the future? Well, everything.
Misinformation, or lack of information
Failure to care for, protect and serve the common man – Only the rich and powerful with allegiance to the current government matter
Totalitarian rule – a system of government that is centralized and dictatorial and requires complete subservience to the state
A society in which any criticism or questioning of the government is immediately silenced by deeming it “fake”
A country where the 2nd Amendment is praised and must be protected at all costs. Yet, the 1st Amendment is absolutely suppressed
SO THIS IS WHERE I WILL END THIS POST. HOWEVER, EXACTLY WHERE I’M LEAVING OFF IS EXACTLY WHERE I WILL BEGIN MY NEXT BECAUSE WHAT IS HAPPENING IN THIS COUNTRY RIGHT NOW IS AS EQUALLY DISGRACEFUL AS EVERYTHING OUTLINED IN THIS POST.
I grew up as many Irish children do. I never worried about being grounded or punishments. (Okay, many Irish kids did get punished, but not my point here).
No. What I got was the “Irish guilt” – the constant feeling of how I was disappointing my parents, not doing what was expected of me and/or a whole assortment of ways in which Irish parents make you feel like you’ve committed felony murder. Many times when I hadn’t actually done anything wrong, mind you.
They say there’s a stereotypical “Jewish mother”. Well, Irish mothers are that times 10! Yes, an Irish mother will love her children with every ounce of her being. Yet, don’t ever cross her, or do anything that she would interpret as crossing her. She will guilt you until you bleed – even if you’re sick.
Given recent circumstances that arose within my family, I was compelled to write this post.
While this issue has come up countless times, this particular situation truly hurt my heart because as the perceived “sick” person – it’s not about me. It never is. It’s ALL about EVERYONE ELSE!
This unfortunate truth relates to family, friends, work, and on and on. However, this particular post is focused on my relationship with my immediate family.
I cannot begin to count how many times my mother has said, “I’m just worried sick over you” or “I can’t sleep I’m so beside myself over you”. Not once is it ever about how I’m feeling. It is ALWAYS about her. As for my father, he will not visit me in the hospital – absolutely refuses. Apparently, “he can’t handle” seeing me in the hospital. He does not call. He occasionally sends a text of a photo of our dog, which my parents take care of when I’m hospitalized. I may get an email or two, if I’m lucky.
Yet, because he is a doctor he constantly has an opinion on the course of action my doctors take, and it’s usually something I do not agree with.
Just one instance that exemplifies this perfectly is when I consulted with a particular neurosurgeon at the hospital where my prior surgeon had retired. He was the Chief of Neurosurgery and a man I loved and respected. We had a fantastic relationship, so trusting my brain to anyone else was terrifying. While this consult was with someone who trained under my former surgeon, to say he paled in comparison is a huge understatement.
This man really only spoke to my husband and father, while he either ignored both my mother and I, or scoffed at our questions. He proposed an extremely invasive procedure. Admittedly, I ultimately did have the procedure but only after a much less invasive procedure failed to remedy the problem, and I had it performed at another hospital. Anyway, I asked very direct, difficult questions that this surgeon did not want to answer. Yet, when my father asked the same questions, he indeed answered them. He constantly diminished my concerns – the number one concern being that he proposed inserting a shunt into my brain that would drain fluid into my abdomen. Yet, when I questioned him on the fact that we were uncertain if there were cancerous cells in my brain and he was now proposing to drain this brain fluid into my abdomen, I was told, “You don’t need to be concerned with that. It’s unlikely”.
Well, sorry but “unlikely” is not good enough! What if there was cancer in my brain? What then? Oops, we made a mistake! Nope. Just. Nope. Not. Good. Enough.
I say all this to say that my father lit into ME after the consult stating “how obnoxious” I was to the doctor – as if I was to blame for his arrogance, male-chauvinist attitude and total ineptitude! I may not have gone to medical school, but I did earn a law degree, passed 2 bar exams and knew I was asking the proper questions for my own protection. I’m no idiot, especially when it comes to my health. Yet, my father chose to try and make me feel guilty, for some unknown reason, despite how openly disrespected I was by a stranger. He chose to berate me about pushing a doctor on serious issues related to MY health!
My father and this surgeon totally played into one another’s “God complex”. That ish does NOT fly with me though. Especially the male dominant BS. Not to mention, this man had us wait over 3 hours to even get back into the exam room and literally ran out the door with not even so much as a goodbye! The four of us just stood around looking at one another, asking “Is he coming back?” The answer was, No, he did not come back. About 5 minutes later his awful nurse entered the exam room as if nothing had happened. Needless to say, I found another surgeon who is so kind, gracious and much more competent.
Side Note: I did file a complaint with the patient advocate over this doctor’s behavior. He called and apologized, but clearly he did not even recognize how poorly I was treated. How could I trust my brain with someone so unprofessional and unaware of his behavior?
Now my mother has her own unique brand of guilting me because of my sickness. I am reminded pretty much daily that I’ve been sick. The constant barrage of questions: “How are you feeling today?” “Did you have a seizure?” “How is your hand?” “Are you walking okay?” “Any falls?” After 6 straight years of this, it’s gotten pretty old. Despite telling her that I don’t need to be reminded of my condition constantly, all I get in response is, “Well I’m just so concerned about you.” While that may be true, I’m 40 years old, not 4 years old. Also, Irish people LOVE misery. Walk into a local pub back there and there’s 3 topics. The first: Who died. Second: Who is sick, what do they have and a list of 10 other people who had it or have it. Finally: The weather. Always the bloody weather. It’s either “freezin” “roasting” or “lashing rain”. There may be some gossip about this one or that one, but guaranteed it always comes back to those 3 topics. It’s like misery is in our DNA or something.
Not only does my mother’s guilt involve feigning concern but also claiming she’d do anything to help. However, if I actually asked for help, I’d get 300 excuses why she “just couldn’t”. And every 300 of those excuses would ultimately circle back to one thing – work.
What it all boils down to is simple: my entire life, all my parents did was work. I often wondered why they even had a child because in their list of priorities it would be: 1.) Work; 2.) Each other; and, 3.) Me.
Do my parents love me? 100%. Have I ever wanted for anything material? Never. Did they do the best they could? Yes, but the caveat was always and forever will be, as long as it doesn’t conflict with work or requiring that they leave the 2-mile radius of their clinic/home. Yes indeed, their practice is in the home I spent the better half of my childhood in.
My parents are the epitome of the immigrant mentality that “America is the land of opportunity”. Yet, in order to build a successful practice, they’ve worked their fingers to the bone and still have not retired despite being in their 70’s. They do not believe in vacation or days off. And sick days? Forget it. So in a nutshell, this was the environment I was raised in.
Of course, when I was diagnosed with brain cancer over 6 years ago their work did not slow down. In fact, I was guilted into the notion that now, they’d have to work even harder to supposedly support me. I have a husband with a job. I don’t live beyond my means. I get disability. Has their financial support helped? Definitely, but as I mentioned, it comes at the price of constantly feeling guilty that because I got sick, they still have to work.
On top of all this, add my husband’s Irish family and you’d swear I only got sick to spite all of them! It drives his sisters insane that he loves me so much. One is in the midst of a divorce and the other… I could write a book on the dysfunction of that marriage! While my husband will always be a Mommy’s boy, I know deep down they all blame me for being sick and not giving him a child because well, that’s all women are supposed to do. Forget a career or anything except push out some kids. Since I was diagnosed just a year and a half into our marriage, I am once again the guilty party for failing at my “womanly duties.” It’s safe to say his sisters and I equally despise one another, but then again – my sickness is ALL about everyone else, right?
At this point, I’m done with managing everyone else’s emotions, feelings, etc. about MY health! I am no longer going to speak to anyone who I do not trust with my emotions. I will remain silent because as the quote below states: I am tired of fighting. So very, very tired.
Throughout this whole blogging experience, the majority of my posts have focused on my own personal experiences.
Lately, I kept seeing the book “Untamed” by Glennon Doyle pop up on the Best Seller’s List, and see friends post about it on social media. Now, I’m a sucker for True Crime novels and really didn’t think “Untamed” would be my cup of tea. So, I didn’t look into it until last night.
In the last year or so I’ve been buying audiobooks. Despite my love of holding an actual book in my hand, I cannot focus on those like I can an audiobook. Whatever damage my brain suffered over these last six years, I just cannot read a physical book anymore. It almost pains me, but a girl’s gotta do what a girl’s gotta do. So I now have quite the collection of audiobooks. And yes, I have an Audible subscription.
More to the point, I decided to see what all the fuss was about and bought the “Untamed” audiobook. Admittedly, I have not even finished it yet. However, I’m going to buy the physical book because I want to underline, highlight and make SO many notes in the margins!
As I listen to the audiobook, I want to constantly scream out, “Yes!” I purposely began listening to it on my iPad with phone in-hand, so that I could utilize the microphone and repeat quotes into my “Notes” App. Of course, I have to rewind the audiobook multiple times to get the full quote. Hence, it completely disrupts the flow of the book.
Even if I never finish the book, which just simply will not happen, Glennon Doyle has already taught me so much.
I hesitate to use the word “lessons” because I feel it implies that Doyle is preaching to her readers, which I don’t believe she is at all. Blame my catholic school upbringing, I suppose! Nevertheless, the stories and “lessons” about pain have provided me with a whole new outlook.
No spoilers here, I hope.
One thing Doyle emphasizes is to, “Feel it all.” In other words, it’s OK to feel all the “stuff you are feeling”. As she herself comes to realize, “feelings are for feeling-even the hard ones”. As humans, we are supposed to feel everything! Pain is included in that.
Despite the endless pharmaceutical ads that try to convince us otherwise, sometimes we’re meant to feel sad, depressed, overwhelmed, etc. Now, let me be clear-clinical depression and/or a mental health disorder is not what I’m talking about here. With that being said, sometimes we have really sh@tty days or weeks, maybe even months. Although they’re obviously not enjoyable, those days, weeks, and/or months are simply part of the human experience.
Once we realize this, and don’t just turn to a pill or booze (or whatever harmful means people find) to numb the pain, we can fully live. Again, as Doyle states, “Feel it all!” Further, she emphasizes that we need pain “to become”. Now, this may sound totally ambiguous and vague. Maybe even a little hippy-dippy. Yet, she uses two fantastic examples to clarify her point.
Doyle briefly discusses the Buddha. He was actually born a prince. He literally lived like royalty – a very, very comfortable life. However, when he was 29 years old he snuck out of his palace only to find poverty, sickness and death. He had been shielded from this his entire life. So he chose to leave his life of riches to seek enlightenment. After a long search, he went into a deep meditation and found that enlightenment. Thus, he realized that his “conditioned experiences” could not provide lasting happiness or protection from suffering. He had to experience all emotions to find true joy. He even had to experience pain.
Another strong example Doyle points to is Jesus. Regardless of your faith, Jesus is historically believed to have been indeed a real man. Whether your faith teaches you he was our Lord and Savior is 100% yours to feel and believe. I frankly believe that all religions have their validity, unless a religion teaches harm to others. Fundamentalists are present in every religion.
Back to the point, in discussing pain Doyle states that Jesus walked straight to his crucifixion. He was not afraid of pain, as it is part of our life on Earth.
In utilizing these two examples, her concept that “pain is magic” becomes more clear and understandable.
The concept that truly struck me, given all I’ve been through these last 6 years, is:
“I can feel everything and survive”
She comes to the realization that she can “survive again and again”. After that momentous realization, she naturally became less fearful. Phew! If that’s not an epiphany I don’t know what is!
Now, I’ve read multiple Deepak Chopra, Eckhart Tolle, Gabby Bernstein, Mitch Albom, and other widely respected authors who write about the human condition and our life’s purpose. I listen to guided meditations. I’ve been to wellness events and retreats. Yet, something about how Doyle discusses the purpose of pain (something I’m constantly focused on) just resonated so clearly.
Doyle elaborates on this further, stating that:
“You can survive pain, and feel it all, and still survive…What I thought would kill me didn’t…I was wrong”
In her personal journey, Doyle finds that:
“Pain is the fuel of revolution!”
She further explains that if you know the pain is present, you also know “the rising” will come and welcome you. I understand that to essentially mean:
Always remember the pain will eventually end. You will get through it and in fact, be a stronger, better person for having gone through it.
People constantly ask how I’ve gone through all that I have and continued to remain so positive. I think Glennon Doyle has summed it up pretty darn well in “Untamed”.
Now I’ve got to go and finish the rest of her book.
Today was Mother’s Day in the States. Obviously, with a pandemic in full blast people celebrated a bit differently. Some families are together, so maybe mom got breakfast in bed or a nice lunch set out for her. Many families are separated though, so they turned to Skype, Zoom or an old-fashioned phone call.
Presents or flowers were likely shipped. Perhaps some gifts, like mine for my mother, dwell “in the cloud” of the “due to the coronavirus your item may be shipped at a later date than normal and we will continue to keep you updated” category. Maybe others were home-made, well because we’re all home!
I am not a mother, and an only child. All my family besides my parents is back in Ireland, so no aunts or cousins around. Beyond my amazing friends, the only other woman directly in my day-to-day life is my mom.
My mother is incredible and literally the hardest working person I’ve ever met, and she’s 70+. We did the old school conversation over the phone today. It was hard not seeing her, but it doesn’t bother either of us much. I’d say though she’s a bit high-strung, (sorry, Mom) we’re quite alike. Neither of us become pit-bull, Fighting Irishwomen until you /the situationoffends us or our ideals. Otherwise, we’re both intelligent, rational people. I think so anyway.
I won’t get into much detail, but I don’t have a fantastic relationship with my in-laws. We’re all opinionated, stubborn, pit-bulls. Don’t get us angry. It’s ugly. You’d think being so similar we’d get along. Nah. No. Nope. As the line in the movie My Cousin Vinny goes, we don’t “blend”.
Not having a child is an underlying issue. By not giving my husband and their family a child, I’m really of no worth. “Being a mother” is the only thing they do. As a couple with no children then, my husband and I naturally matter less to his family. The fruitless, barren ones! His entire immediate family also all live within 5/10 minutes from each other. We live a nice 40 minutes away. Thank god! Nevertheless, they’ll constantly be together and my husband never gets a call to come by.
The reason, in my opinion is simple: ME. I’ve achieved in blackballing my poor husband from his family because his sisters switch-hit on who hates me that particular day. First, they don’t want to be around the “sick person” or “expose” their children to a sickie like me. Add on the fact I don’t have a child, and it’s safe to say it’s been less than an ideal situation.
Well today, on Mother’s Day (and the irony does not escape me) after a huge argument amongst my husband and his family, I was screamed at by an insane SIL to, “DIE!” Yes, I was told to leave my husband, leave their family alone and “DIE!” I wasn’t even involved in the argument! Yet, who does the blame fall on? ME. The fruitless, barren one worth less than, hmmmm, dirt.
It’s hard. No, it takes every single bone in my body not to stoop to that level and just go after her and all his family, who would want nothing more than to see us apart. As an aside I joke, although I’m not really joking, that they’ve probably got a line of women ready for him hoping I do in fact die. Every surgery I go in for, they’ve likely got the rosary beads out, because after all they’re such devout Catholics, praying this time I finally go.
My husband is so much more important than their evil, petty attempts to drive us away from each other. However, if I was in fact to succumb to this horrid disease one day, there would definitely be an all-out, no holds barred extravaganza!
So, here’s to all us fruitless barren women out there! Let us enjoy sleeping in, doing what we want when we want, vacations when we choose, oh and quiet! Lots and lots of quiet. And to any single women reading this: Find a man with ONLY brothers!
Since my diagnosis in 2014, I’ve had some type of brain surgery…every… single… year with the exception of 2018. So, in 2019 just to make up for it, I guess, I had to get 2 “surgery notches” under my belt!
I’m now one week out from my 6th brain surgery. It was something termed a “Burrhole Craniotomy”. In real-people speak, I basically had a GPS-guided needle inserted into my skull to drain fluid from a lesion/cyst that sat in my brain for years caused by the insane amount of radiation I received between 2014 (initial diagnosis) and 2015 (recurrence). When I met with my neurosurgeon’s N.P. before he came in to discuss our options, I basically ticked-off every box for issues related to fluid in my brain. Yes, including being “ticked off” at everyone and everything. Yet, she asked politely, “Are you feeling more irritable?”. My husband had a good laugh at that one. We both answered with an emphatic “YES!”
Prior to the surgery, I became extremely angry and depressed. I never really had those feelings for such an extensive period without them being caused by some horrid med… ahem, Keppra, Dexamethasone. Nope. This time it was all me. Facing a 6th brain surgery, admittedly, gives me some leeway to feel so utterly miserable. I am only human after all.
I know full-well going to that “dark place” isn’t just damaging to my mental health, it makes me physically weak. I need to go into surgery healthy in all aspects-physically, mentally, emotionally, spiritually, etc. Yet, I couldn’t pull myself out of the darkness.
The one thing I was 100% confident in was my neurosurgeon. If I ever turn this into a book, I will absolutely name him. However, for now we will remain anonymous. I know for sure he truly lives and breathes by the Hippocratic Oath, most especially
the duty to “do the least harm”; and,
“there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.“
Fortunately, I’ve made wonderful connections within the brain cancer community since my diagnosis. I have no doubt some of those connections are why I’m still here. They’ve led me into the exam rooms of some of the most impressive physicians in this country. My neurosurgeon is one of those people.
So, despite all my neurological issues, including losing total use of my left hand, falling on the daily, constantly losing my memory or at least feeling such brain fog I literally forgot the year, I knew my doc would get me through this. And he did.
Without getting into too much detail, I had consulted with another surgeon first. Wait, I actually wrote a whole post about that experience. Oh well… “blame brain cancer brain”Totally off topic – Can we stop saying, “oops! Must be Mommy brain!”? No, like I’m literally missing a part of my brain that was infected with cancer – twice. Then, it got lots and lots of radiation beamed into it. We just forget shit! Mommies, don’t hate me, please.)
So, that other surgeon had proposed a much more invasive surgery. I was incredibly uncomfortable with his plan. I was very open that I was going for another consult at another hospital. The hospitals in NYC seem to compete with one another like spoiled school girls. I’m not too too concerned with that B.S. I’m trusting my brain with whoever is going to stick by that whole “least harm” idea.
My surgeon utilized the least invasive means possible, I only spent one night in the hospital. My left hand is working again. I’m walking better. The brain fog is still around, but I’ve been on Percocet the last few days. I’m not quite so “irritable “. My husband is very happy about that! I’ve got another surgery notch under my belt. Thankfully, I’m finding myself again too.