I have made a point to keep my blog free of all political discussion purposefully because I don’t run a political blog. 21st c. political discourse tends to be characterized by fear mongering, polarizing and pedantic language, a lack of civility, ad hominem attacks and other logical fallacies, and a ferocious but presently normalized invective that was not culturally familiar or acceptable twenty or even ten years ago. I am most likely the millionth person to observe that something has shifted in the last five years in the United States in terms of what Americans accept as ‘normal’ behavior from our local, state, and national leaders. Where we were once scandalized by a sitting president engaging in oral sex with an intern in the Oval Office, we now condone (in the form of electing him to office) a father’s brazen admissions of sexual attraction towards his daughter as well as permit a known sexual harasser and batterer to occupy the highest office of power in our country. This is where the culture wars, political partisanship, ideology substituting itself for good politics, and excessive corporate campaign contributions led us.
They led us to the great disaster of Judge Brett Kavanaugh’s confirmation hearing before the Senate Judiciary Committee Friday, September 28. The nation was on pins and needles because this was not just another hearing. Something about this hearing felt nauseatingly familiar to many men and women tuned into C-Span, and I’m not talking about politics. Something else was afoot.
Judge Kavanaugh was nominated by Mr. Trump in July 2018 to replace Supreme Court Justice Anthony Kennedy. While I’m very interested in the political reasons for Mr. Trump’s choice not the least of which is Kavanaugh’s view that a sitting president cannot be indicted, I am far more inclined to examine Sen. Lindsey Graham’s (R-SC) outburst during the hearing in which he explodes in anger towards the Democrats questioning Kavanaugh:
“What you want to do is destroy this guy’s life, hold this seat open, and hope you win in 2020.”
The Republican from South Carolina then turned his attention back to Kavanaugh and asked: “Are you a gang rapist?” Kavanaugh replied: “No.”The Republican senator also asked Kavanaugh, “Would you say you’ve been through hell?” Kavanaugh responded, “I’ve been through hell and then some.”Graham expressed sympathy for the Supreme Court nominee and his family, saying, “I cannot imagine what you and your family have gone through.” He added, “I hope the American people can see through this sham…”Earlier in the day, Graham compared the judge’s treatment to Ford’s experience, the woman who came forward to accuse him of sexual assault.“I’m not going to reward people for playing a political game, I think, with her life,” Graham said. “She is just as much a victim of this as I think Brett Kavanaugh (is). Because somebody betrayed her trust, and we know who she gave the letter to.” (CNN)
Certainly, this outburst has a political context, but there is a wide stream of that something else flowing through this dialogue; and it should not to be missed. I want to break it down, but before I do I want to note that Sen. Graham spoke with Chris Wallace on “FOX News Sunday” prior to the hearing. Here’s what he said:
“What am I supposed to do, go ahead and ruin this guy’s life based on an accusation? I’m just being honest. Unless there’s something more, no, I’m not going to ruin Judge Kavanaugh’s life over this. But she should come forward. She should have her say. She will be respectfully treated…I will listen, but I’m not going to play a game here and tell you this will wipe out his entire life,” Graham noted. “‘Cause if nothing changes, it won’t with me.” (CNN)
There it is again–that idea that Kavanaugh’s life will be ruined somehow were Dr. Blasey Ford’s allegations found to be credible, and Graham is…what? The harbinger of Kavanaugh’s downfall should he hold him to account with rigorous questioning or further investigation? As CNN’s Editor-at-Large says, “If the very people who hold in their hands — and votes — the power to make or break Kavanaugh’s nomination are admitting publicly that almost nothing Ford says will change their mind(s), isn’t that the sort of rank partisanship that has gotten us into this morass in the first place?” Logically speaking, if Kavanaugh sexually assaulted a young woman in high school, then isn’t he the cause of his own ruin? Of course, a young man can hardly conceive that one day he might be a Supreme Court Justice nominee, but that is neither here nor there. Young men shouldn’t be drunkenly sexually assaulting young women and expecting to win a gold medal in ‘Character and Ethics’ a few decades later when past bad acts come to light. The Senate Judiciary Committee’s job is to sniff this sort of thing out and make certain that Supreme Court Justice nominees are fit for the role: beyond reproach. Sen. Graham and the entire committee lost sight of that role in the midst of their pursuit of power:
“A judge must be a person with strong character. A judge who has strong character has the ability to apply broad, general law to a narrow, specific set of facts without abusing the court’s authority, letting his or her personal views get in the way, or overlooking important facts and law…a judge should be a visionary. The judiciary is responsible for making sure our laws serve justice and uphold the Constitution. When our laws fail to do so, a judge should search for a way, within the confines of the law, to right a wrong and see that justice is done, even in the face of a disapproving majority. Finally, a judge should be a patriotic American. By this, I mean that a judge must be concerned for the country and the people the law serves more than his or her personal agenda or self-interest. Justices must have intellectual integrity. Supreme Court justices ordinarily are accountable only to their own consciences. Justices must be able to build consensus. The court’s opinions only have force when a majority agrees; fractured decisions leave people struggling to understand what the law means.” (What Makes a Great Supreme Court Justice?)
Alas, Sen. Graham indicates that holding Kavanaugh to account is akin to ruining his life, but this is not something that jibes with Graham’s past actions or his ambitions.
“Graham, who was first elected to Congress in 1994, came to national attention in 1998. He was a member of the House Judiciary Committee during the impeachment of former President Bill Clinton. Graham then served as a “manager” of Clinton’s Senate impeachment trial.
The irony of his demonstration is that Graham, who wants to chair the Judiciary Committee someday, sought to use a sex scandal to take out a president at that time. Now, two decades later, Graham is defending a Republican Supreme Court nominee from accusations of sexual misconduct.” (Politico)
Moving on, the first question that Graham asks of Kavanaugh is whether he is a gang rapist. That would be a legitimate question if Judge Kavanaugh were accused of gang rape, but Dr. Blasey Ford never alleged that Brett Kavanaugh gang raped her. She never declared, “Brett Kavanaugh is a gang rapist.” So, why ask such an absurd question? Well, this question is a logical fallacy called argumentum ad absurdum in which someone appeals to the extremes in an attempt to disprove something. Notice that Sen. Graham did not ask Kavanaugh whether he had engaged in forced sexual touching with Dr. Blasey Ford. That would have been a legitimate question. No, Graham comes up with some absurd caricature that offends the imagination, triggers victims of rape, and strikes skeptics as ridiculous: “Judge Kavanaugh as high school gang rapist?” P’shaw! No, he’s not a gang rapist! Well, if that’s not right, then the whole allegation must be false; and therein lies the deception and utter brilliance of argumentum ad absurdum. Brett Kavanaugh, however, can be innocent of gang rape and still be guilty of sexually assaulting Dr. Blasey Ford. It was, well, an absurd question.
Sen. Graham’s next question makes Brett Kavanaugh look pitiable, and it is a brilliant juxtaposition considering the public just watched a prosecutor take Christine Blasey Ford apart for four hours under high pressure questioning in front of the Senate Judiciary Committee. Who looks like a victim now? The victim of sexual assault or the alleged perpetrator? It was a clever redirect.
Sen. Graham then goes on to offer sympathy for Kavanaugh’s “suffering” going so far as to call the hearing “a sham”. He then takes it further by comparing Kavanaugh’s present circumstances–being heavily scrutinized, questioned, and potentially investigated–to Dr. Blasey’s high school sexual assault at Kavanaugh’s own hands. Yet this is the purpose of a hearing! A Supreme Court Justice nominee is supposed to be heavily scrutinized and questioned. If I, as a citizen, am supposed to abide by the laws this man interprets, then I want to know that he isn’t guilty of breaking any himself particularly in the realm of sexual violence.
So, what is all this then? What is the “something else” that we are witnessing aside from obvious partisan politics and sniping? This is gaslighting. Perceptual manipulation and minimizing in the public forum.
Why is it gaslighting? This is where I have to speak politically for a moment. This hearing was indeed a sham largely because the GOP is trying very hard to confirm Kavanaugh before the midterm elections. I understand their zeal and impatience. They have an agenda, and they want to see it through. This hearing was a formality for the conservatives. Sen. Graham’s irate posturing and belligerent bloviating accusing the DFL of a sham was manipulative. The entire hearing was a sham from the beginning. The GOP did not seem interested in the true quality of the contents of Judge Kavanaugh’s character or past actions that might reveal his deeper nature. If they were, then Sen. Graham would have been open-minded and quietly considered every word Dr. Blasey Ford spoke last Thursday during her four hours before him and his colleagues. The Senate Judiciary Committee would have called for an FBI Investigation right away and postponed all proceedings. Some things just matter more than a political agenda.
Had this been the DFL pushing through a favored nominee with little opposition due to lack of votes, then it would have likely played the same way. Their hearing would have been a formality, too. Each party has its own idea of who should occupy this most coveted seat on The Bench. That being said, what is more important? The next two to six years of the GOP political agenda, or the next forty to fifty years of judiciary competence, ethics, and rigor? I know that POTUS has openly boasted about: grabbing women by the p*ssy (2015 “Access Hollywood” Interview), treating women like sh*t (New York Magazine), calling women who breastfeed disgusting, and going so far as to find 12 year-old girls attractive among so many other offensive and misogynistic misdeeds (Telegraph), but Mr. Trump’s anomalous, abnormal, and likely personality-driven behavior should never be normalized because it is not, in fact, normal or something to be modeled. In fact, America’s elected officials should raise the bar–or, sadly, return the bar to its previous height–and demand excellence from each other in conduct, behavior, speech, personal and professional ethics, and character regardless of their party affiliation.
The issue at hand should not be: “There wasn’t a problem with Kavanaugh until you pointed it out; therefore, you must be the problem, ____________.” (insert Dr. Blasey Ford, another accuser, or DFL) . In my mind, the most pressing issue is the possibility that a Supreme Court Justice nominee may very well have sexually assaulted at least one woman, and the majority of the GOP does not seem to care about that. This reeks of cronyism, elitism, and that old institution that must crumble: The Boys’ Club (well, you know, generally for privileged white boys and men).
For many people, this “something else” feels so familiar because it is familiar. For survivors of sexual violence, we’ve seen our perpetrators defended while being blamed ourselves because we “looked” like we wanted it. Our perpetrator didn’t understand; we should feel sorry for him/her. S/he sure is going through hell now being held accountable. Besides, they have such a bright future. Why make a big deal out of a misunderstanding? (That’s minimizing or trivializing, and that’s a form of gaslighting)
Perhaps we were told that we didn’t remember it like it happened (This is called countering, and this is a form of gaslighting). The following ever-popular accusation is often made and was made by Trump himself: “If it really happened, then why didn’t you come forward?” You need only look at the four-hour ordeal Dr. Blasey Ford has been subjected to not to mention everything else she is currently enduring to understand why men and women don’t come forward after sexual violence. I was raped when I was 22 years-old on a date, and I never told anyone. My refusal to disclose doesn’t mean a rape never happened. It only means that I didn’t talk about it. Period.
Gaslighting is pervasive, and one can encounter it in myriad environments both professional and personal–and political it seems. Be savvy. Pay attention. When you begin to feel crazy, like you’re the only sane one around, start really listening to what is being said to you or around you. Educate yourself on perceptual manipulation aka gaslighting. Learn about logical fallacies. Logical fallacies are commonly used in political arguments and rhetoric. The culture of our political system can change. It changes when we vote and get involved.
So, get out and vote in the people who line up with your values and ethics, and vote out the people who do not. Also, pay attention to how your current political favorites behave when they are politicking. Do they rely on gaslighting and logical fallacies to push their points and agendas? Do they often align themselves with those who do? Carefully consider that. It matters. A lot.
I used to write a lot about trauma and the nature of it largely because I was in the middle of dealing with it. For me, I would try to get outside of my own traumas and inspect them as if I were looking at a car I might buy.
That works for a while–the distancing. It restores to you a sense of control, and for people who have been traumatized feeling in control is meaningful. It brings a sense of empowerment, and that makes a huge difference when you’re doing “trauma work”. But, what about those things called “triggers”? What happens then? Honestly, it feels a bit like this:
Eventually, however, we have to take a meaningful look at what traumatized us. That is what many of my trauma-related posts are about–trying to live a meaningful life while also stuck in the “glass box of emotion”.
But, what about life after the trauma work? What do I mean by that? Well, I can tell you what I did during the trauma work. I shut my life down because I had no energy to power it. Metaphorically, I had a small generator, and that only kept necessary systems online. I withdrew from almost everything that involved socializing because I did not have the emotional energy to interface with other people. I was too sensitive at that time to deal with the normal flaws and foibles that characterize the human race. I could barely reach out to my friends. I was just trying to stay afloat. We are talking about surviving here. Getting out of a serious domestic abuse situation is not easy. It was one of the hardest things I’ve ever done.
I lost friends in the process. There are people who will not understand, not believe you, or who who will shame you for taking the actions you did. It all contributes to a very rocky healing process and extenuates the grieving. Alas, after the initial shock, the therapy, the fallow period in which you feel utterly broken, and the slow ascent out of the pit of despair and pain, you can and do emerge. You will be “remodeled”. You aren’t the same, but you are still you. So, what now? Three years after my ex-husband moved out, what have I learned?
At this point on the road, this is where I’m at. I’m sure in a year I’ll be somewhere else, but it is reassuring to know that we don’t have to stay where we are now. We can get up and move. As always, I wish you all great peace and…
I just started reading Goodbye, Things: The New Japanese Minimalism by Fumio Sasaki.
Maria Kondo struck a nerve in America with her runaway hit The Life-Changing Magic of Tidying Up. I, however, need to do more than just tidy up. I need to purge. Do you know what I mean?
I’ve lived in my house for 19 years. That’s a long time to live in a singular space, and, while I make it a point to donate gently used items quarterly (or we would have nowhere to hang our hats), it’s nowhere near enough. I have four daughters. Children seem to amass large quantities of things. People give them things. They collect things. They want to keep them forever. I understand that. I feel sentimental about certain things. Children, however, seem to feel sentimental about almost everything–even that used napkin from last Tuesday when their friend came over and used it to wipe dirt off the floor. It’s actually a testament to their wonder, I think, and capacity to be 100% present.
And if you have a basement?! God have mercy on you.
Another round of donating is not what I’m about to embark on. In ten months, I am moving house. Three years ago, I announced on this blog that my marriage was ending after years of back-and-forthing and writing about domestic violence and emotional abuse and, “Is it really that bad?” A year-and-half ago, I went back to graduate school, and next summer three of my daughters and I are headed West–to the Bay Area. To live in a very small space no doubt. It’s the beginning of another new adventure.
So, I have to examine every single thing I own and decide: Do I need this or not? And, I wasn’t sure how to go about doing that. That’s why I picked up Sasaki’s book. I figured, hey, there must be some good advice in here. At a minimum, maybe I’ll feel inspired or mentored. Sasaki, thusly, defines minimalism as:
“Minimalism is a lifestyle in which you reduce your possessions to the absolute minimum you need. Living as a minimalist with the bare essentials has not only provided superficial benefits like the pleasure of a tidy room or the simple ease of cleaning, it has also led to a more fundamental shift. It’s given me a chance to think about what it really means to be happy.” (pp. 20-25).
Here is an example of a minimalist bedroom:
A minimalist kitchen:
A minimalist bathroom:
A minimalist living room:
I have noticed that all of these images are super posh, and, in my opinion, this should be more accessible. What does a middle-of-the-road minimalistic apartment or house look like? You know, where ordinary people reside. Of note, this is not a movement aimed at people living in poverty. First-world countries are heavily affected by consumerism and capitalistic expenditures, and the USA tops that list with China and Japan featuring second and third. Americans are awash in stuff:
The USA features the highest levels of per household disposable income and expenditure. High income levels boost the capacity for discretionary spending of US households, although the country’s income gap remains large and continues to rise. (Euromonitor International)
I wonder what sort of impact those of us with too much stuff would have on our communities if we donated the items we truly don’t need and seldom if ever used and stopped using our income to acquire more goods, thusly, changing how we “consume”? Furthermore, what sort of impact would this have on our time–an invaluable resource? I imagine that owning less means having more time, too, because we have to dedicate time to caring for our stuff. How might we spend our resources if we moved in a minimalistic direction with intention? Over the next 10 months, I intend to find this out. I can tell you right now what my two biggest problems are going to be–whittling down the book collection, my kitchen implements because I am a cook, and tea accoutrements. I have an unusually large number of really beautiful teacups most of which were gifted to me, and I can’t take them all with me.
Perhaps I ought to do a giveaway! One teacup a week…
Anyone like teacups? English teacups? And then there are the Yixing teapots…
God have mercy indeed (I’m actually sort of excited to see how this experiment turns out).
I receive many emails asking how to fix a loved one. It might be a mother with a personality disorder or a partner or family member with alexithymia. In both cases, I have been that self-same person on the search for solutions. I have asked the same questions: What can I do to fix this? Is it me? Can I fix myself so that they will love me? Can I fix them by giving them books to read or directing them to resources? Maybe they had bad modeling as children and just need to be loved better, and I’m the one to do it!
I have loved someone with a disordered personality that kept them out of reach, distant from me, isolating me on a loveless and lonely island. For years, I dove into the treacherous sea of uncertainty and swam to distant coastlines in an attempt to rescue my own mother from her mental illness. I came bearing recommendations and suggestions that I swore would help her. I only roused her inner demons and exacerbated her illness causing her to throw me back into the black waters which promptly washed me back onto the rocky shores of my tiny island.
I loved another person who seemed to thrive on isolation and personal inertia. From the moment we returned from the weekend in a hotel we called our honeymoon, he holed up in a room and rarely ventured forth into the outside world. He preferred fantasy over reality. He disdained my presence and cultivated an impoverished sense of love and relationships while also developing a deluded and grandiose sense of self. It did not matter how hard I tried to enter into his personal poverty or what riches I offered him. He rejected everything. He preferred his own distorted interpretation of the world. He chose himself even over his children. Whether he lacked the capacity or the will, it did not matter for he simply did not act. He remained as he ever was.
What then? The heart wants what it wants and loves whom it loves, but then what? When the truth becomes apparent, and when will it become apparent? When you ask for it. When you want it. And, what is this truth? It is not your job to change people. It is not your job to fix people.
It is your job to change and heal yourself.
It is our job to develop our personalities and our character so that we are continually becoming the kind of people with whom we would like to partner either platonically or romantically. This is no small task. It is so much easier and, honestly, far more fun to look at other people and pick them apart. It’s vastly entertaining to scrutinize and judge our acquaintances and even our partners. That smug feeling we experience when we climb onto our high horses is like taking a hit of heroine. It’s addictive. Why? Here is an interesting take on judgment:
“At some point in our life, usually in childhood, some external event causes us to separate from that true nature. That separation from love creates in us feelings of specialness or inadequacy, leading to loneliness and as a result, fear. So we project it outward in the form of judgment.
We know we are loving, interconnected beings, but in our separation we live in a dream state, shutting off our connection to our loving truth. This separation establishes the ego’s perception of a false self based on judgment. We grow to believe deeply in the false perception of ourselves in order to feel safe in the world of separation.
Deep down, and without realizing it, we judge ourselves for separating from our truth, leading us to feel ashamed and guilty. That unconscious guilt is so painful that we have no choice but project it outward in an effort to end our suffering. By projecting judgment onto others, we deny and repress our feelings of guilt. Subconsciously, this makes us feel even more guilty because we know this judgment is not who we really are. The guilt we feel from judging others is then projected right back onto ourselves, and the vicious cycle beings again. This the judgment cycle.
I cannot overstate this: Judgement is the number one reason we feel blocked, sad and alone. Our popular culture and media place enormous value on social status, looks, racial and religious separation, and material wealth. We are made to feel less than, separate, and not good enough, so we use judgment to insulate ourselves from the pain of feeling inadequate, insecure, or unworthy. It’s easier to make fun of, write off, or judge someone for a perceived weakness of theirs than it is to examine our own sense of lack.
Judgment is an addictive pattern.
Judgement is an addiction response to deep-rooted trauma. The first trauma is the separation from love. From a spiritual perspective, choosing fear and separation over love dissociates us from our truth. We become fragmented in this state of separation and lose our connection to our inner being. In this disconnected state, we inadvertently turn our back on our inner being and become obsessed with an outward projection of who we think we are. Feelings of guilt and sadness wash over us, because deep down, we know we’ve turned our back on love. But we can’t fully understand our guilt, so we do whatever we can to avoid feeling it. This is how the cycle of judgment becomes and addictive pattern.
When we avoid our guilt and suffering by projecting it onto others, it’s a way of numbing out. Like any good drug, judgment will anesthetize our pain and redirect our focus. It can even get us high. Gossip is a great example. Whenever you get together with friends to talk about another person in a judgmental way, you’re avoiding your own core wounds. You’re using judgment as a drug to numb your own pain and get high on someone else’s. Gossip is especially nasty because it gives us the illusion that we’re bonding with others, when instead we’re just banding together to heap all our pain onto another person.
Gossiping can give us a buzz because it provides temporary relief from self-judgment and attack. We repeat a self-judgmental story on a loop all day long: I’m not good enough. Why did I make that mistake? I’m ugly. I’m not smart enough. And so on. All these self-inflicted behaviors are just another form of addiction. We unconsciously choose to judge rather than feel the pain beneath our wounds.
But notice I said that our self-judgmental story is played on a loop. That’s because it leads nowhere! Getting on the path to healing requires us to feel the discomfort—but we’re way too scared to go there, so instead we gossip or judge ourselves as the victim feels safer than facing our wounds. This I show self-judgment becomes an addiction.
The addictive pattern is further fueled by our denial. We long to feel better but deny that judgement is the problem. In fact, we see judgment as the solution, as a way of protecting ourselves. Our unconscious belief system keeps us stuck in the judgment cycle because we’re terrified of facing our own pain and suffering. We use judgment to protect ourselves from exposing our deepest wounds.
The repetition of judgment is habit-forming. If you repeat a behavior over and over, you strengthen your neural pathways. In time that behavior becomes second nature. The more you repeat the pattern of judgment, the more you believe in it. You create your reality with the thoughts you repeat and the beliefs that you align with. When judgment is your belief system, you’ll always feel unsafe, under attack and defensive. If you’re going to change the habit of judgment you need to change your core belief system. Our aim is to find our way back home—to find our way back to love.” (From Judgment Detox by Gabrielle Bernstein)
Stopping any self-destructive cycle and engaging in a truly honest personal inventory with the intention of self-betterment is difficult but virtuous. Asking the question: What do I really want from a friend and partner and then committing to developing those very qualities in oneself is, in my experience, the path to actually ending destructive relationships and beginning healthy ones.
Why? Well, as you begin to grow into healthy behaviors and ways of relating to yourself and other people, you will organically grow out of unhealthy patterns of behavior. Self-destructive behaviors will ebb, and the people in your life who were attracted to those qualities in you will migrate away from you because you will naturally also move away from them. Simply put, your orbits will change. This kind of growth is a process, and processes take time. It is not something that happens immediately, but it does happen when you commit to your own process of improvement and growth. After a time, you will see that destructive people have left your life. You may also be forced to make difficult decisions like ending relationships that were always bad for you or have become so over a period of time, but this is part of growing up and into living life with intention.
When you live your life with intention, you discover that you cannot make another person meet your needs; you cannot force another person to stop hurting you. You can only move away from them and choose to live your life among different people who share your values. And, this is essentially what people are emailing me about: How can I make my loved one share my values? How can I make the person I love stop valuing neglect or gaslighting or exploitation or selfishness or their own personal inertia? How can I make them see that what I value is better? You can’t. If you don’t share the same values now, then you likely never will. Take the temporary hit, gather your momentum, and keep going. You will find other people in the world who do share your values and will love you, and you will love them, too. You really will.
I don’t say any of this flippantly or without compassion. I have done everything that I’m suggesting, and I know all too well just how hard it is. I also know what life looks like “on the other side”. It is worth it.
I like to write useful posts, and I’m going to try to spin this “leaden” topic into gold as it were. I think I can do it.
I am certainly getting many opportunities to engage in circumstantial alchemy at my college. I have to confess something. I had a rather disheartening interaction with a fellow student yesterday, and, because I process through writing, I thought I would write about it.
I’ve not written a lot about my health issues (at least I don’t think I have). My personal view of my health journey has always been that I’m a healthy person fighting off illness rather than I’m a sick person fighting to be well. That paradigm has kept me optimistic and positive. Sometimes, however, when you’re dealing with an unrelenting, chronic condition or many unrelenting, chronic conditions, there are trying days, and the illness(es) wins a few rounds. Truth be told, I’ve been a healthy person fighting off illness since early childhood. I’ve spent months that probably add up to a few years of my life in hospitals, and I carry multiple diagnoses and see four specialists outside of my primary care physician just to manage all of these diagnoses. Frankly, I became a bit discouraged because I wondered if I actually had one unknown condition that was the umbrella diagnosis manifesting as all these other health problems.
Last year, I ended up in yet another specialist’s office seeking more help because I suspected I had stumbled upon the X factor–the unknown umbrella diagnosis. I was, thusly, diagnosed with Mast Cell Activation Disorder/Mast Cell Activation Syndrome, and it could very well be the foundational problem underlying every other health issue I have. It is also a giant pain in the ass. My doctor moved quickly to get the right protocols in place so that I would stop experiencing anaphylactoid reactions every few weeks, and she connected the dots between her diagnosis and the other specialists’ diagnoses. That was a huge relief. She indicated that it was indeed quite possible that I didn’t actually have all these other conditions; it may all be a mast cell disease at play. I was both shocked and awe-struck. I left her office with an Anaphylaxis Action Plan in place. I now wear my Medic Alert bracelet all the time. Everyone close to me knows how to administer an Epi-Pen, and my very long list of allergens is up to date. I get monoclonal antibodies infused at the hospital every four weeks, take Gen 1 and Gen 2 antihistamines daily in addition to mast cell stabilizers. I follow a low histamine diet. I do my best every day. And yet, as most of us know, sometimes your best is not good enough.
Sometimes things still happen like stress or viral infections or food contaminants. Or, a nurse doesn’t administer an infusion correctly, and a mast cell activation event occurs that leaves you in bed for 10 days sending you to the ER for fluids, Zofran, and steroids. I didn’t know that could happen!
(Actually, two nurses mistakenly injected Xolair directly into my abdomen intramuscularly! Like they were rabies shots!!!)
It was while I was lying in bed last week feeling like I was run over by a truck and working myself into a nice, foamy lather over missing a week and half of classes that I comforted myself–“Your friends at school will get your notes for you. It’ll be okay. Your teachers know you. No, you’re not a slacker. You won’t fail out of grad school…”
So, finally, here is my confession. Here is the lead. When I was finally able to return to school, I greeted the people I knew and thanked them for putting notes in my mailbox. I approached a friend I’ve spent time getting to know, and her affect clearly indicated that she wasn’t interested in talking. I thought that she could be distracted, but then I realized that she was not interested in talking to me. I moved to end the conversation; my final remark was a movie recommendation and she almost scoffed, “Well, at least you did something positive last week.” Whoa.
Did you catch that? That’s shame right there. Whether she knows it or not, she was condemning me for being sick last week. For not meeting her criteria of engaging in “positive actions”, and embedded within that sharp retort was blame: “It’s your fault that you’re sick.” She then went on to ignore me–to distance herself from me–a perceived sick person. And, from an anthropological perspective, this is very mammalian–unless, of course, you’re an elephant.
“Some scientists studying wild elephants have argued that, in addition to cooperating for survival’s sake, the creatures are capable of genuine empathy. Poole recalls, for example, one elephant flinching as another stretched her trunk towards an electric fence; it was fortunately inactive at the time but had been live in the past. Elephants often refuse to leave their sick and injured behind, even if the ailing animal is not a direct relative. [Joyce Poole, one of the world’s foremost elephant experts and co-founder of the charity ElephantVoices] once observed three young male elephants struggle to revive a dying matriarch, lifting her body with their tusks to get her back on her feet.” (Scientific American)
I felt as if a stone were in my stomach for the rest of my class. Like my heart had dropped low down into me. I was disheartened and disappointed. I did not understand this social interaction at all until just moments ago as I was trying to write this out, but I see it now. There was no compassion, and I don’t say this because I feel entitled to it. I merely observe it.
Living with a chronic illness is…weird. It’s too easy to say that it’s hard. For me, it’s not hard exactly. I find it strange. There are days in which I feel perfectly fine. I don’t have any pain, and I’m almost not fatigued at all. Of course, my diet is very limited. I’m practically a vegan because I can’t tolerate most animal proteins particularly bovine meat and milk. I have celiac disease so that means no gluten, and I’m deathly allergic to quite a few fruits and nuts. And now what with the MCAS diagnosis, I have to pay attention to foods that are “histamine liberators”. There are days that it feels very complicated, but, for the most part, I don’t really mind. Every day that I don’t literally almost die from anaphylaxis, I’m truly grateful. I’m not one to think in terms of fairness or justice because that smacks of a victimization. Illness is part of the human experience. Is it fair? Well, I cannot answer that. Suffering is part of life.
What I have gleaned from my experiences with long-term, chronic health issues is empathy and compassion for people who suffer from, well, just about anything. To quote John Mulaney, adult life is so goddamned weird. We do not have the privilege of foresight. We don’t know what lies ahead of us, but we do have the opportunity to cultivate a better personality with a richer substance and character that allows us to meet the unknown with courage and resiliency. And, what of this unknown? You may never get sick and stay sick a day in your life, but someone you love might. What’s more, they may do everything right and still never heal properly. Then what? Will you blame them? Tell them that they aren’t positive enough? Good enough? Strong enough? Dedicated enough? X enough? Will those well-meaning judgments most likely intended to spur them on to try harder actually help them? No. Why? If a person with a chronic illness could heal from trying harder to heal, then they would already be better. Trust me.
We are all human in the end and will shuffle off this mortal coil. Where then is the gold from this lead? I think that it is to be found in the how. How we live. How we treat others. How we view others. Even how we go about experiencing our diseases and disorders if we have a chronic condition. The one thing we are guaranteed is that we will all come to be intimately acquainted with suffering in either ourselves or other people. What then? Compassion. It is the only legitimate response. It validates, legitimizes, heals, and grows connections. Compassion mends the broken places and bridges the divides.
What of the people who blame, shame, judge, alienate, invalidate, and ostracize us for things that are no fault of our own? Well, sometimes we learn how to be better humans by observing others make mistakes.
If I wasn’t fully present to the reality of compassion and its utter necessity in the world before, I am now. I don’t feel angry at my fellow student. Oddly, I feel grateful. Her impoverished response acted as a mirror for me. For those of us who do deal with chronic conditions whatever they may be, we need to have compassion for ourselves because sometimes it’s in short supply. For me personally, I want to continue to develop compassion in my character and be mindful to exercise it. Unfortunately, you can count on other people to judge what they do not understand, and many people do not understand chronic illnesses particularly people who have been healthy for most of their lives. It is a lonely place when you are your most frequent and best advocate, but sometimes that is the road set before you until you find your tribe.
And, so, I will raise my voice today to join the other voices of compassion. There is absolutely no shame or reason to accept judgment if you have a chronic illness. Regardless of the overflowing fount of opinions in your life and the world at large, you deserve compassion, kindness, empathy, and a safe place to land where good friends will love you today. Just as you are.
Keep going, MJ
“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.”
― Dalai Lama XIV,