It’s ALL About Everyone Else

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.

Funny Because It’s True!

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?

Moving on…

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.

“Untamed”

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.

One image of the Buddha

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.

Depictions of Jesus

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, I was told to “DIE!”

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 situation offends 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.

So, so true

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!

You just can’t make this ish up…

It’s okay to be married and NOT have kids

Living Through A Pandemic, But There’s Enough Talk About That… But I Kinda Gotta Talk About It

I’ll admit, despite being a highly educated person, I had never even heard the word “pandemic” prior to a few months ago. Since none of us can remember what day and/or date it is at this point, I can’t even pinpoint when I first heard it.

Living right outside of Manhattan and with all of my doctors in NYC, these last few months have been indescribable. I run the gamut of emotions on the daily. One minute I’m angry at everything. The next, I’m weeping seeing photos of my doctors on the “frontline” because, Yes, it is a war zone here. If you are one of those, “This is all a hoax” or “We have the right to allow ourselves to die” types, stop reading now. I’m not sorry for refusing to tolerate ignorance. Hearing that kind of talk then brings me back to my manic anger.

I feel frustrated and helpless that I cannot do a thing to change the state of affairs here, when hospital staff have to risk their lives and/or the lives of their families working in hospitals literally full of virus patients. I cannot handle the sight of tents set up in Central Park and other areas in the City, filled with patients because the hospitals are too overcrowded by this pandemic. I cannot handle knowing the millions upon millions of dollars that stream into the hospitals in which I treat. Yet, healthcare workers have to find their own PPE (Personal Protective Equipment) to keep themselves safe. We are applauding the fact that only a few hundred are dying these days, down from 700/800 people per day… per day! Yet, we don’t even know the actual numbers because, well, I’ll keep the politics to myself.

So, as of today, there’s been over 75,000 deaths in the U.S. and over 20,000 in New York alone. Well, that we know of at least. The 9/11 attacks killed 2,753 people at the site of the World Trade Center. Those who have been taken by this virus are mothers, fathers, daughters, sons, sisters, brothers, etc. They include nurses, doctors, and other hospital staff. Morgues and funeral homes are filled to capacity. So, refrigerated tractor trailers sit outside of the hospitals to load in the bodies. One Brooklyn funeral home was even recently found to be simply keeping bodies on ice in rented trucks due to overcapacity. The owner was quoted, “I ran out of space. Bodies are coming out of our ears.” These patients died an isolated, what’s been described as an extremely painful, horrific death. Then they’re just loaded into trucks, their family and friends unable to honor them with a proper funeral/burial.

One Jewish woman in an Assisted Care Facility, also in Brooklyn, was even buried in a Catholic cemetery despite already having a paid family plot in obviously a Jewish cemetery. Oh, and her estate was charged nearly $15,000 for her “Catholic funeral” that never even took place!

I truly feel like I’m living through the worst Sci-Fi horror movie, ever. As a cancer patient, I’m accustomed to “quarantine life”. However, the few times I’ve actually left my apartment, the sight of (mostly) everyone in masks, wearing surgical latex gloves, avoiding getting too close to strangers on the sidewalk, literally empty Manhattan streets… It really feels like the apocalypse has come and it’s not ending any time soon.

While I was in acute, in-patient rehab at NYU Langone’s Rusk Institute, there were rumblings of the virus spreading. There were very varied opinions at that time in early February. Some nurses and staff were extremely concerned, while others believed like so many of us it would just be like a bad flu. When I was released in mid-February, feeling so strong and energized, ready to get back to my outpatient PT & OT routine, no one advised me to be safe, wear a mask, limit my contact with others. That’s not the fault of the hospital staff. In my humble opinion, they were being kept in the dark, again like so many of us.

Once I was finally released, I had now undergone my 7th brain surgery and had a shunt placed into my brain that drained fluid into my intestinal area. I had spent a full week in ICU plus 2.5 weeks at Rusk. I was obviously immune-compromised, yet I went around NYC to all my follow-ups and to all the appointments I had missed while hospitalized. I didn’t wear a mask. I didn’t practice social-distancing, which is another new term I’ve learned. In fact, I rode an elevator with music-industry legend, Clive Davis, and his entourage. I was continuously told, the virus would not be as bad as some were saying. So, I didn’t worry. I mean, in less than six years I have REALLY been through some ish! How could this be any worse? Oh how wrong I was – how deeply deeply wrong I was. (Cont. on Page 2)

Relationships, “It’s Complicated”

Relationships, “It’s Complicated”

images

I could write for days on this topic… but, for now just a brief post.

When you’re the sick one, so often YOU have to “manage” all the feelings, emotions, mental state of family, friends, significant others, etc.  Yes, they love you.  Yes, they’re concerned about you.  Yes, they worry about you.  Yes, they mean well.

Yet, unless you’ve been there, it seems like so many of our loved ones don’t understand that while we’re going through physical, mental and emotional hell all of THEIR concerns and worries also get projected onto us.

If I had just a nickel for the amount of times I’ve had to reassure, or at least tell those around me, “Don’t worry.  I’ll be okay.”  Well, I’d have a lot more money in the bank!

It breaks my heart when I hear people, who have battled this disease and come through it, talk about all the people who walked out of their lives when they got sick.  The healthy ones who “couldn’t handle” it!

Closing in on six years in this “Big C Club”, I’m only now beginning to understand why that happens.  Ultimately, most people act weak until they have to face something tragic, go through something that challenges them to their core, or somehow become aware/enlightened of their own inner-strength through mindfulness or meditation practices.  We all have this strength.  Yet, so few people are aware of their inner-power, i.e., the power of our true spirit/soul/nature/whatever term you choose.

Honestly, before I got sick, I absolutely loved the holidays.  They’re a time we should be happy, joyous, surrounded by those we love and who love us.  I could never stand the people who complained about how “stressful” they were – it’s the exact opposite of what the holidays were meant to be!  I relished in trying to find that perfect gift for everyone.  I would sit there with such anticipation, so beyond excited to see the reaction on loved-ones’ faces when they’d open their gifts.  Decorating my Christmas tree every year with either “Elf” or “Christmas Vacation” on the TV has been my own little tradition since I got my 1st apartment.  I loved having my “girls’ holiday dinners” with my close friends.

Yet, these past few years I’ve dreaded the holidays.  Besides the fact that some medical catastrophe always seems to creep up around November/December, or around Easter especially.  Well now on top of all that, there always seems to be some kind of family-related “drama” – and if it’s one thing in my life I do NOT want, it’s drama.  It all circles back to the sad reality that when you’re sick:

  • Some people will inevitably turn their back on you because “they can’t handle it”
  • You, despite being sick, have to inevitably “manage” other people’s emotions and feelings
  • You will be a “topic of conversation”, like it or not
  • How many times will I have to answer, “How are you feeling?” though truthfully no one really wants the hard-nosed truth.  Imagine sitting around the table, while that delicious turkey is being carved and answer, “Well, I feel like absolute s##t almost everyday.  I struggle to just walk to the bathroom.  I sleep until noon because my body is so treacherously fatigued that if I wakeup any earlier, I may fall.  I can’t go outside because the cold air seeps itself down to my bones and my entire left side becomes completely rigid.  I have headaches almost everyday that debilitate me.  And, I’m one of the lucky ones!  Someone I knew just died of cancer.  But how are you?”  Yep, your family will really want to dig into those mashed potatoes and gravy after that…

So, yeah, as if cancer doesn’t suck enough, it makes relationships pretty “complicated” to put it lightly.