It broke my heart to read this the other day. MLB should be ASHAMED for not taking care of their own! I’m ashamed enough for them.
Dave Sheinin, thank you for writing this important article and shining a light on such a serious matter.
While battling for proper diagnoses, finding the correct treatment method(s) is crucial to your overall well-being. For the better part of this year, I’ve had different people attempt to over-ride my intuition. I don’t like that. It is a surefire way to piss me off.
I don’t like being told what to do regarding my health, or anything else. It annoys me that I listened to their words and considered anything I was not completely committed to for even a minute. It upsets me that I didn’t fiercely hit back immediately with my thoughts on each subject. I, for some great, unknown reason, kept my mouth shut. Keeping my mouth shut is the polar opposite of who I am in almost all instances. Anyone who knows me knows I’m not known for biting my tongue.
Maybe it was the knowledge that I would have to move forward with someone new, and I need these people to maintain my medication, for now? I’m not sure, but that’s one solid reason to remain silent, even if you hate yourself in the process. I’m trying to survive in a bad situation and not come out any worse than I already am. I understand survival methods, we all do to some extent, but it’s not a good enough excuse for being silent.
Maybe I was hoping these physicians were “having a bad day” and didn’t actually mean me harm. However, that is precisely what occurred, and it’s not acceptable. No one should have to feel trapped in situations like this. I don’t like playing games. I don’t like the bullshit involved, and I like it even less when “healthcare professionals” are the ones slinging the shit. The people I am most receptive to are genuine. I can tell precisely who means well and who is merely repeating dialogue from some internal script. If you’re going to spout nonsense, I am not going to be receptive to it, or you.
When a doctor presents an option, it is genuinely okay to disagree with the methodology and/or their thought process. It is okay to have questions. You may be desperate as hell for pain relief (I am, but I have limits and boundaries, as should we all.), but you do not have to say “Yes.” when everything within you is saying/screaming “NO! Don’t do this. This is not the answer.” If other people have said “I’d like for you to try this.”, it is also okay to turn around and say, “You first. If you’re SO adamant for me to say something should be tried/done, then you go ahead of me. I want to see you cope with the pain I cope with and endure bullshit procedures and guinea pig testing.” You are not a “bad patient” for asking questions, for challenging the system, or for saying “No.” It is okay to decline medication you already know is not helpful. It is okay to ask a physician if you can try a previous treatment method that did help. Ultimately, if you are not being true to yourself, you have to put your foot down somewhere. I did. I decided that if my intuition was screaming at me not to do something, there was probably a reason for it.
What did I not do this summer? Trigger Point Injections. Why? For starters, intuition. My doctor never explained them to me when they were presented as an option, thus leaving me to be an educated patient and do the research solo, only to come away with a “What the fuck?!” moment as I counted the twenty-ish injection sites that would go into various areas in my neck and back. He only said “I’d like to try this to help relieve the tension in your neck.”, and that was the end of the discussion. He did, however, say to call if I had any questions, but subsequently I was handed an appointment and left the office beyond disheartened, and more than a little angry.
I went from being taken seriously to no longer being an “interesting patient”, so my feelings of anger and frustration are valid. That direct quote is in his notes from my first visit, “Thank you for this most interesting patient.” If I had a more established relationship with him, I might very well have kicked him (accidentally, on purpose) for how he treated me. Needless to say, this did not help foster trust moving forward. I do not think I will be returning to him. I am already discussing overriding my doctor’s office via the insurance company in order to get a second opinion. If you didn’t think you could do this, you can. Fact: Not all doctors are correct in their assessments.
Once I was fully educated on what the TPIs entailed, I called his office a week before my scheduled appointment and asked him to call me back. Minutes later, a nurse from the office called, asking if I “really needed to speak with the doctor or could she help me”. I wish you all could have seen my face in that moment, because it wasn’t a good one. I wanted to tell her something incredibly unkind, and in the future, I will not speak with minions. That’s a new rule I have chosen to implement. I’m tired of what I say being twisted and/or lost in translation.
Instead of actually listening to what I was saying and hearing me out, this nurse was rude, patronizing, disrespectful, and when I said I’d like to table the injections and go back to medication, I was told he wouldn’t prescribe it “because it’s an opioid.” You would think I had just asked for pure morphine to be injected into my veins daily the way she spoke to me. No, I asked for Ultram (that’s Tramadol, for those of you who have never heard of it.), which, having taken it in the past, I assure you is a safer form of pain relief. In all the years I was on it, never was I addicted, chasing a high, or doing anything irresponsible. If it could take my pain down from a high level to a tolerable three or four, that meant it was working. With this particular medication I was never asked to show identification when picking it up at the pharmacy, nor was it considered a “controlled substance”. I did not require a paper prescription when I needed a refill. It could easily be called into the pharmacy of my choice with no issue, and I never caught drama when I picked it up each month. I only had to see my doctor once or twice a year to discuss my progress. Apparently, it is now a scheduled drug. I did not know this because I don’t spend my days perusing lists of controlled substances. In order to be approved to take it, I was told I’d have to sign a “pain contract” and come in monthly (I assume for more drug testing. I’ve actually spoken with my insurance company about how often they are abusing lab work because of this methodology. Unless a physician is suspicious of you not being honest about illicit drug use, there is no need to screen them every single time they come into the office. That is thousands of dollars being billed for no reason.). However, when my doctor called me back he said, since he cannot find the source of my pain, that injections are all he can offer me at this time. He said he was not comfortable prescribing medication to me “since he cannot find a pain source”. He was open to discussing things further, but said he understood my hesitation regarding the injections. I have not called him back because I am legitimately angry that finding the source of the pain I suffer from daily was something he was not interested in doing. Why do people become doctors? I’ve met at least a dozen waitresses who were far superior at “helping people” than the average doctor. I was mortified to learn he will be presenting at the International Pain Summit in Boston this Fall.
As a result, I am not going to allow myself to be dictated to any longer. I am researching high quality CBD oils and plan on ordering one as soon as possible in my attempt to find some natural pain relief. It’s not a cure, but it’s a direction. I don’t want to be under the care of someone who does not look deeper for a patient and who denounces my pain as something that can be fixed via Cognitive Behavioral Therapy and/or Biofeedback. These things might work for some people, and good for them if it helps, but I can only deal with one set of issues at a time and CBT is not on the list of “how Lisa would like to spend her time”. I have so many issues to deal with and if I can’t dedicate 100% of myself, then it’s a highly pointless option. I will keep pushing to find out the source of my pain, because if my neck is miraculously “healed” (despite the arthritis diagnosis), yet feels like someone is jamming hot pokers into it 24/7, and my shoulder blades feel like they’re going to find a way to spontaneously detach themselves from my body on a constant basis, then clearly something is wrong SOMEWHERE and it needs to be located. I just have to find the right doctor who is willing to help.
I had to argue to get x-rays approved. I had to fight to get an MRI approved, and now, I have to fight to get doctors to take my pain seriously. I’m sick of it. I am sick of their attitudes, insinuations, accusations, ignorance, and judgment. Last time I checked, that’s not how any physician should behave. I have all the “patients’ rights” pamphlets telling me I am “entitled to have my pain taken seriously and I’m entitled to have it properly medicated and treated.” This statement is in every office I go to, and yet, I feel like my doctor tossed me out on the street for refusing the injections. That isn’t far from the truth, either, because, while under the guise of being a “spine specialist”, he is actually an anesthesiologist. He might have a sub-specialty, but overall, injections are his main goal. So while he was impressed by my bones and their anti-aging quality (I was completely dumbfounded over that. I suppose the bones match the face that is still carded for cough medicine.), the only option he is choosing to offer is injections. A friend told me I should be offered anything and everything at his disposal; not just injections and nothing else. She was horrified, and that added to my disgust.
Someone actually said to me, “If you’re truly in pain, you’ll try anything.” First of all, fuck you. Second of all, needles into and around my spine are not the answer. It’s actually quite dangerous. How is anesthesia, that will wear off within an hour or two, the healthier alternative? Who the hell wants to have injections performed every two weeks? Initially, he told me they’d last “up to eight weeks”. I spoke with people who have tried this particular route and they all told me I did the right thing by saying no. They proceeded to share their stories, most of which centered around the fact that they received zero pain relief from these injections. Many people told me it caused their body to flare-up, and left them down and unable to move much for weeks following the injections. Some people kept this routine up for YEARS, some for over a decade, all in the hopes that one day, it would help. In my mind, this is abuse of power at pain management centers. They push injections and refuse you pain medication unless they exhaust all other options first. I find it incredibly irresponsible.
I can’t see into the brains, necks, or spines of neurology/neurosurgical patients, but I know when I go to my doctors’ office and the place is PACKED (as in, with all the seating they have, and there’s a lot, sometimes you have to stand in the hallway or take a walk and come back.), people are not there because they enjoy it. Each one is seeking answers. Many people are there for a post-op appointment, for medication changes, follow-ups, or something far more severe, as there are many Multiple Sclerosis patients that come into the office. My heart breaks for each of them, because I understand. I see their faces, I look into their eyes, and I see their pain and can feel it in the air. I’m there for migraines, and you’d never know it because apparently I don’t walk around looking like a migraine patient (Let’s not get me started on #MigrainePose because that will, inevitably, be a separate conversation all by its lonesome. I am sure many of you have seen my posts clapping back against it on various social media outlets. I have NOT been shy about my feelings.). I have no clue what a migraine patient is supposed to look like, but I have zero tolerance for being judged based solely on my face. It’s tiresome, and yet, it happens all the time. My primary care doctor, without discussing my health issues with me, wrote a letter and declared me “perfectly healthy”. The woman has only met with me twice. A responsible doctor would have called me and asked what’s going on with my health, or made time to see me. Having anyone declare me “perfectly healthy” is incredibly disturbing, and it reinforces why I need a new doctor. She may be great if you only see her once a year, but G-d help you if you’re a complicated patient. The reviews I plan to write on every medical website she’s listed on should spread like wildfire from here back to where she went to medical school in Spain! That’s the current level of my wrath.
Like many people, there are certain levels of pain I can block out. It’s something we all learn to do over time, but once I reach my boiling point, there’s no way I can look or behave “normally”, whatever the hell that means. I have had to discretely take medication for the beginning of a migraine in public so many times, I have lost count. I’ve had friends and family say they had no idea I was taking medication at all because I didn’t discuss it. I never realized I tend to open a bottle inside my purse, take out what I need, and quickly take the medication, without a discussion about whatever it is I am taking at any given moment. Could be Aleve, could be a muscle relaxer, could be a beta-blocker, one never knows. Sometimes I excuse myself and take medication in private. People often assume I am not in any pain because I “look just fine”. Looks can be deceiving. I was recently told “You look great!”, and I simply didn’t view it as a compliment. Anyone who says those things, without thinking about how I will react to being told I “look just fine” or “look great” are the people who aren’t with me at 4:30 in the morning when I cannot sleep and I desperately want the pain to end. They’re not by my side during the never-ending days when every solitary sound is like a jackhammer to my skull, or feels like a train is using my head as its personal tunnel. They aren’t with me when my physical pain tolerance makes getting out of bed torturous. They’re not with me when I have to crawl from my bed to the bathroom, wanting to cry from how awful it is to attempt movement. They’re not with me when I am on day five of a flare-up that has cost me days of my life, time that should have been spent focused on other things. Leave it to some of the more callous people in my life to make remarks and make me feel bad about my limitations. Fact: It is NOT okay to tell someone one thing and then turn around and belittle and/or threaten them. It is NOT okay to denounce my suffering and pretend I am not going through hell simply because you’ve had a bad day and I’m the only target in sight for your rage. I might not always voice it, but this is a battle and it is a difficult one. And it REALLY isn’t right to have someone tell you “It’s good that they dropped the dose of your medicine. You don’t want to be on that stuff for the rest of your life. It’s like handcuffs.” One, I didn’t ask for this person’s opinion and two, that’s THEIR issue, it is not mine.
I would not take medication of any sort unless it was medically necessary. When medication is cut by 50% without a physician making sure that’s a safe thing to do, that is called medical malpractice. I am actively seeking out information regarding my rights because I cannot allow this to slide. To recently learn that this doctor chose to go behind my back and say there’s nothing wrong with me, and use the phrase “perfectly healthy” nearly sent me into a rage of mass proportions. My chart clearly states my diagnoses. The first three are severe. For her to actually write a letter and say “There’s nothing wrong with this patient.” is exceptionally low. Even now, still experiencing symptoms of stroke and seizures, worrying that my heart or kidneys will go into failure, I MUST advocate for myself and for anyone else this particular doctor might harm. If you’re going to take the Hippocratic Oath, you had better know what the hell you’re doing with a patient’s life.
The shining light in all of this was running into one of my former doctors while I was in a medical building at the end of June. It was one of those moments where you know it happened for a reason. I do not believe in coincidences. We crossed paths and it was an incredibly symbolic moment I did not expect to happen. It’s not often someone is genuinely happy to see me, but he was, and it was touching to me because I don’t ever assume people will remember me. We talked for a few minutes and, to make a long story short, he pulled some strings and got me in where he currently works, so he is officially my doctor once again. Without his help, I spent eight months jumping through hoops like a tiger in a circus act. In less than two weeks, he handled the situation and kept his word. I couldn’t be more grateful. The statue in his honor might have to be built sooner rather than later. 😉
I am still trying to figure out how I feel about being his patient again, aside from “safe”. I thought, maybe, it was taking the safe route, and/or, maybe taking a huge step back, but ultimately I feel like this was meant to be. I even discussed this with him and he understood my perspective.
When someone actually cares about their patients, devotes time to them, knows how to pick up a phone and return a call, and is the same person in and out of the office (He did NOT have to pull strings for me, nor did he have to stop and chat on his own time. I’m insanely grateful for what he did, and he knows it.), it reinforces my respect. I am not comfortable with the status quo of the medical community at large. I only like and respect TWO doctors out of all the people who are supposed to be treating me. These two physicians know how to listen. They don’t interrupt me. They are focused, which is incredibly helpful to me because right now, my focus is shot to shit. I have the attention span of a gnat, and that’s the opposite of how I am in my daily life. I respect a doctor who discusses my treatment plan with me, as opposed to issuing down a command/ultimatum. After all, I’m the patient and it’s my body and mind we’re talking about. If a physician isn’t involving you in your treatment plan(s), that’s a HUGE red flag.
I refuse to sit and be afraid to speak up, speak out, and/or confront a doctor. After an appointment in July, the medication issue, and finding out about this letter, I am left with the disconcerting task of confronting my Internist. I don’t know if she was thrown under the bus by another doctor and the medical director of her office (I wouldn’t be shocked if she was, but the letter she wrote pretty much sealed her fate with me.), or if she truly “went rogue”, as they claimed. Regardless, she did something dangerous and stupid, and risked my health in such a way that I had to contact another doctor and move an appointment up because I knew I wasn’t okay, and I didn’t think waiting was an option. I left the doctor a message and he personally called me back and gave me three different time-slots he had available (Yes, the doctor I ran into.). When a doctor says “If you called me from the parking lot, I would still make time to see you.”, that’s important, because so many are booked up months in advance and would happily hand your care over to a physician’s assistant or nurse practitioner. I agreed to see my Internist’s NP, but after going over her words and actions, especially as I waited for serious test results and only got someone to call me back after two plus weeks of calling the office, I am not pleased with the care I am receiving. It took all that additional time to finally get a referral to a rheumatologist, due to my test results which clearly shows inflammation within the body, and to receive an optometry referral. It took them nearly two full months to send me a letter and let me know that the eye tests I had done were negative. I knew this constant lapse in care was becoming normal when the nurse I spoke with said “They didn’t call you? They didn’t send a letter?”, after my umpteenth call regarding my inflammatory panels, and she sounded incredibly annoyed that neither had been done, because “that’s proper protocol”. I talk to this woman often enough that she knows me by name and is always sweet and kind to me. She promised me I’d receive a call by the end of the business day. It took an additional four days for this to be cleared up. And sadly, the nurse I spoke with was shocked, again, that I know how to read the results of complicated blood work. I kept calling to ensure I’d get the referral, I didn’t need her to clarify anything beyond that.
When you go into this particular office there are countless numbers of people back there. It’s not like they don’t have extensive staff on site. So someplace, somewhere, the ball has been dropped and is probably close to the Earth’s core by now. But as a patient, it’s not MY job to be making a million phone calls to get a fifteen second voice mail message in response and have them log that into the system as a returned phone call. My insurance company warned me back in March that I would probably spend this first year holding doctors accountable and making a lot of phone calls, but the fact that I also got a case manager to assist me during all of this insanity is, possibly, the reason my doctor is pulling some of this crap.
Doctors are abusing their power as they see fit. They are abandoning their patients as they see fit. They are, without question, DOING HARM. It falls upon the strong, the smart, and the fearless to stand up for patient rights and speak out about the shady shit doctors are doing, under the guise of following procedure. If you can’t find something in your medical records, especially since everything is online these days, something that has apparently been said, or you were not privy to a conversation or decision, or, like me, a letter, SPEAK NOW. Call your insurance company and file an internal grievance. Know your rights. Follow your intuition. Make sure medical decisions fully involve you, the patient, and if they don’t, and you don’t feel comfortable with something or someone, make your voice heard. Because if you don’t, they win.
I have affiliated myself with 50 State Network to advocate within the state of Massachusetts, and beyond. I strongly suspect it will inevitably become more. When people hear me speak in public, they are blown away. I generally don’t think much about it. I could be in front of twenty people or twenty thousand, and I would still speak the same way. I will still be strong, articulate, witty, sarcastic, and real. I make direct eye contact that tends to make people uncomfortable, but for me, it’s all about being heard.
As an advocate, I will be having discussions with politicians all across the board to make sure pain patients and people with invisible illnesses have a strong voice supporting their needs. If you knew how much I despise politicians, you would all send me gift baskets now, and lots of Dr. Bronner’s liquid soap (Peppermint, Lavender, and Almond are my faves.) because I will need to shower four times a day to keep away the reptile reaction I have when surrounded by politicians, many of whom are lawyers. All jokes aside, I am nothing if not a powerful voice and I’m not afraid to use it. This is a healthy outlet and it motivates me to do something I would never have chosen to do on my own. For the handful of people who encouraged this, supported it, and told me I could do it, I thank each of you. It’s amazing, sometimes, how people get to know you and immediately see a pillar of strength, instead of someone who is still, after all this time, searching, hoping, praying, and trying to remain positive, even when her head is full of negative thoughts much of the time.
I have been living in so much darkness, struggling daily for every movement, for cohesive thoughts, for the real me to shine through at all times. I do not like failing at anything. When people compliment me or commend me for a job well done, I stare at them in disbelief. For someone who is not a Type A personality, I am always taken aback by compliments or any positive recognition. In essence, it’s sad, but on the flip side, I realize it means I’m not egotistical. Hooray for the bulldogs! (If you got that reference, I hope it made you laugh.)
The remainder of the year into next (Believe it or not, I actually have a doctor’s appointment on New Year’s Eve. It was the only available appointment for 2018. I was mortified, and I still might go to someone else, as opposed to yet another person affiliated with my “doctor” and her office. It’s not like this person is the only optometrist in the state that takes my insurance!) is going to involve a lot of doctor’s appointments, and several treatments/in-office procedures, few of which I can say I am looking forward to. These are not fun experiences.
I feel terrible, guilty, ashamed, and much like a failure for not being able to write as often as I once did. I’ve watched my numbers slip dramatically this past year and a half, and I feel like I am letting my readers down in some way. I apologize. I feel grateful that many of you have followed me on Instagram and get a sharper glimpse of me as a person on a daily basis, and I am incredibly lucky to call many of you my friends in real life. That means so much to me, especially when I have bad days, which is mostly every day, and can’t focus on my intended goals.
I never dreamed or imagined I could ever, or would ever, be sick like this, permanently, and lose out on amazing opportunities, but most of all, lose out on my life. I’ve suffered for so long, I don’t even know what a normal life looks like anymore. I say that not to gain attention, sympathy, or garner pity, but to share my feelings.
I remember, at the very beginning of all of this, when my mother confessed to a friend that everything she had hoped, dreamed, imagined, and wanted for me was being taken away. It was very early at that time, I didn’t even have the additional diagnosis of Fibromyalgia hanging over me, but I felt so hurt; overhearing how my being sick was somehow this huge disappointment; for her. I felt incredibly betrayed by what she was saying. Eventually, I tried to convey how much I didn’t want the things she was talking about, but inevitably, I decided those dreams would have to skip over me and land on the next generation.
Here I am, all these years later, still sick, my mother has been gone slightly over ten years, and I simply don’t know if there will be a “next generation”. I have a pain in the ass relative who is overly obsessed with my ovaries (I could not make this up if I tried.), constantly sending me articles about how I need to “get a move on”. Coming from someone who does not want children and eschews marriage, I find it incredibly despicable for her to be shoving this crap down my throat on a semi-regular basis. I have kept my mouth shut every single time she’s pushed and pushed at me, and I swear it’s the miles between us, and nothing else, which keeps me from strangling her to death. She does not seem to realize it is hurtful and insulting. She does not seem to understand that I have boundaries. She simply thinks everything is open for discussion, at any time, simply because it’s what she wants to discuss. I can’t help but find it rude and degrading. I’ve talked about it with a few other women and each one agreed that it was disrespectful, rude, and unnecessary, not to mention heartless as hell.
A few months ago, I had the sweetest lady tell me I am going to be an amazing wife and mother. She raved about how smart, talented, and pretty I am. She had just met me, but she gave me the same level of comfort as though my own Grandmother was speaking. It made me cry that day, and it’s making me cry again now.
Sometimes, a stranger sees us with more clarity than we could ever hope to see with our own eyes. And some days, you have to know in your heart that you were put in a person’s path for a reason. Not because you needed to hear things you already know, but because you needed to hear someone else say it with conviction.
I don’t think people understand exactly how invisible illnesses, especially those that reach a chronic stage, are incredibly isolating. At first, it’s friends and family, people you thought would stand by you no matter what, and suddenly, you can be in a place with over 30,000 people around you, and still feel like no else in the world is present. You still feel like a solitary creature. You still feel every ugly thought and feeling rise to the surface, your pain edged against every part of you like the worst kind of knife, even as you’re smiling and enjoying an amazing experience. A lot of people tell me they always say “I’m okay.”, because they don’t want to be perceived as complaining. I NEVER say I’m okay. My first instinct isn’t to lie or reply the way the majority of the world does. You could be a Barista taking my coffee order and if you ask how I’m doing, I won’t give you a boiler-plate response. I know this jolts people, but for me, it’s important not to be dishonest. A lot of people don’t understand this practice, and that’s okay. They aren’t me and they don’t have to live with my thoughts.
Authenticity and honesty are crucial to me, and even more crucial to how I live my life. Anytime either is placed into question, whether the person knows me or not, it is the quickest way to get me to go from zero to bitch in less than a second. There’s no dialing it down or attempting to pull back once an accusation is made because I immediately see red. If you know me, you know I don’t wear the color red. Occasionally I’ll wear a shade of red nail polish or a red lip color, but it’s so infrequent that it’s not usually an indicator of anything. But if I walk into a room wearing a red shirt; that’s not a good sign. Almost everything I own is a shade of blue, grey/silver, black, white, or purple. It took me years to realize my color choices are intentional. They are likely indicative of my aura color, but they’re also the colors I am most drawn to in all things. Red is a warning, and it’s something I’ve become highly aware of over the past six years. An old friend once told me I’m “really aggressive” when I walk into a room wearing red and black. Overall, at this stage any way, I’d say I’m “really aggressive” if you cross a boundary with me or I don’t trust you. I don’t believe in offering blind faith.
So as I sit here in excruciating pain, unable to sleep, filled with doubt and worry, sick to death from stress, dealing with a brutal migraine, I hope with my whole heart someplace, somewhere, someone is looking out for me and looking over me. I’m following my intuition and trying to allow it to guide me, but some days are a hell of a lot harder than others. 😦
Am I okay? No. Maybe someday, my answer will be different.
(If you need me, I’ll be at my doctor’s office. Pretty soon they’re going to have to engrave my name on one of the chairs. When a woman schedules a doctor’s appointment on her birthday, that’s a testament to how bad she’s doing. Thankfully, I’m in good hands.)
copyright © 2018 by Lisa Marino & Blackbird Serenity, LLC. Further protected under the Digital Millennium copyright act. ALL RIGHTS RESERVED.
Authors’ Note: **POTENTIAL TRIGGER WARNING**
Yes, the title is spelled correctly. Yes, it’s intentional.
Most of my weekends are spent doing things I’d rather not do. The weekends were once my refuge for sleep, quiet, peace, laughter, productivity, cooking, more laughter, and space. They are now filled with rushed moments, trying to pack a lot of time into a few hours here and there. I almost NEVER get to do something I genuinely want to do, and despite the fact that I am being supremely honest about that, I can’t say it doesn’t gall me. It does. There’s not a lot about my current life that I signed up for. I find that’s a repetitive theme these days.
On one hand, a person might try shaming me by saying I don’t appreciate what I have. I don’t recommend attempting that tactical method with me. I might seem nice, but I’m not. Only someone who truly understands what I am going through and experiencing would understand why I say what I say and feel as I do. The truth is; I don’t need to justify my feelings to anyone or have them agree or disagree. They’re MY feelings. I own them, and they are accurate.
By a certain age, we all kind of find our niche and know the direction we plan on taking, whatever that direction may be. It could be personal, professional, or a mixture of the two, but the decision is made somewhere along the way to go right or left, or maybe North, South, East, or West. Some of us meet forks in the road, whereas other people see smooth sailing on the same road from the initial decision until the end of their life. My life, for some unknown reason, is one fork after another. It is an expensive place-setting with more forks than one really need have on a table called life, but there they are; ever-present and obnoxious as hell. I’m not a mermaid, you can’t dangle shiny things in front of me and distract me. Perhaps one should try diamonds instead of forks. I’m a Royal Asscher kind of girl. 😉
For a while now the saying “Different levels, different devils.” has been on a repetitive loop inside my head. I have plenty to write and say, and no interest in actually drafting any of it into a post or anything else. I don’t get writer’s block, but I do experience writer’s boredom. Let’s call me a severely bored writer for the moment. It’ll pass.
My usual desire to be creative on other artistic platforms where I have either interest or talent is also in a “bored” phase. For me to walk into ULTA and come out with NOTHING is almost unheard of. I found it kind of disturbing when I was the person who didn’t walk out with a bright orange bag.
A friend asked me how I was doing last week and I replied “I’m in a state of really not giving a shit about anything or anyone.” Not realizing that her reply could make or break someone else, she responded by saying “Oh. That’s kind of a good thing, I guess.” I informed her it most certainly is not.
I’ve been pretty ill on and off for months. I was holding up halfway decently, and have slowly started to decline. Let’s get something straight; no one should EVER rejoice in someone else’s pain or hardships. You can’t tell me I’ll feel better if “just pray harder” or if I “take a bath” and “light some candles”. Seriously?! What the fuck is wrong with people?
Your mental health, and mine, is just as important as the rest of your health. I call Mondays “Mental Health Monday” because I allow myself that time to do nothing, but take care of me. To shut everything and everyone off and allow myself to get into the correct head space to do what I need to for the week. Unfortunately, I already know that I will be badly triggered tomorrow. As a result, today was not the day I intended for it to be.
I am forced to make a heartbreaking decision. Will it kill me? Physically, no, but it will kill my soul, whatever is left of it after feeling like I’ve experienced various forms of hell for the past two and a half years. If I do it, there’s no point left for me anymore because I will finally know there’s no future left for me to return to. There’s no point in forging ahead without what little in this world that gives me hope and keeps me alive.
As usual, my brother caused critical damage to this situation, refuses to take ownership of his behavior and words, and I have no where else to turn. I have always been told that I don’t know how to ask for help. There’s a reason I don’t ask, and it’s because time and again, I’ve been shown cruelty and the true nature of others. If you genuinely want to help someone, then you’ll do it and NEVER throw it in their face. You won’t lord it over them and tell them what a horrible person they are. If you genuinely want to hurt someone, well, I’ve been hurt enough.
This week will be full of challenges and pain for me. I hate feeling hopeless and I hate feeling like I have failed when the truth is, I’ve FOUGHT LIKE FUCKING HELL to get this far. My body feels like it’s perpetually at war, and it is. My immune system fights itself and it leaves me in a constant state of fight or flight. As I type this, my heart isn’t sure if it should be calm or jump out of my chest. It’s exhausting and I’ve had enough.
I spend a little too much time in Witch City, and have for the past year. Yesterday I was subjected to more people than I EVER want to be around in close spaces for over two hours. I have never been more happy to escape crowds of people. I keep thinking how sad it would be if this was my last weekend ever. I wonder if the selfishness of others would then finally be realized.
I never get to do anything of my own choosing. But I do get to control what I write.
copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
Not that long ago, what I can only presume is an “older gentleman”, and by “older”, I mean over fifty, but probably closer to seventy, sent me a private message on Facebook to complain about my use of a word. I remember reading the message and thinking “Are you for real?” Initially I ignored it, until I decided to reply and set him straight.
As a writer, and especially with something like this platform, I don’t feel I have to edit myself or dumb myself down. In fact, I transitioned to this platform from another one that is still “active”, because I felt like I was neutering myself there and wasn’t fully being the outspoken person I always am. I needed to remind myself how I started out and how I have grown, but not changed my voice and how I use it.
I have come to resent myself whenever I am not 100% me, especially when someone turns to me and gives me any type of “warning” about how vocal I am or how they would like for me to “behave”. I’m not a child or a trained dog, so that kind of behavior, when directed at me, is a quick way to get yourself on my shit list. I revel in authenticity. You cannot ask me to me something I’m not; because the results will be negative.
The word this man took such issue with is one I did edit, slightly. Instead of using the word I wanted to use, I said “effing”. If that offends someone, that is a sad state of affairs to me because that’s pretty clean in my eyes. I couldn’t get more “clean” with that specific word, either. Perhaps I should have used symbols, instead? I know lots of us use this word in our daily lives because no one is perfect and it’s probably an overused word in many instances. I’ve never counted, but I’m sure I use it daily.
I remember consciously making the decision to use it in that “edited” way so as not to offend anyone. And yet, I get someone who is offended by it. Big surprise. He somehow felt the need to inform me that I shouldn’t use it in connection with God on a public forum. I love it when people think they’re lecturing me. <rolls eyes>
“I don’t mean to come off judgmental…” Really? How did you expect to come off? When surfing Facebook or the Internet at large, I am certain we probably all come across things we don’t like, or things that affect us in a negative way. You have the right to engage or scroll on. Hell, you can walk away from your phone, computer, tablet, etc., and disengage entirely. I will usually scroll on if something isn’t worth my effort because unless I know someone, what’s the point of engaging? Would I engage with a stranger on the street who said something stupid? It depends on the situation, obviously, but for the most part the answer is “No, I would not.” I’m not that nice, or approachable.
As a result of this person’s comment, I ended it with respectful wishes for the upcoming holiday (Passover) and left it there. I’ll probably have to block him if this comes up again, lest I offend his delicate sensibilities with my honesty and directness regarding Israel, Judaism, or perhaps the placement of the sun in the sky.
When something is titled “Poison In Lethal Doses”, you can come to expect certain things from me, since I’m the one producing the written content. Anyone who has read my bio can probably figure out that I’m a “take no prisoners” kind of chick. From day one, the way I have conducted myself as a writer is the reason I have received respect, not to mention a widespread audience. There are Harvard educated doctors who read my work (Yeah, it shocks me, too.). If they’re not offended by the occasional use of profanity to make a point, I’m good with that. This is definitely not the place for anyone who is sheltered or buttoned-up so tightly that an edited word bothers them.
Believe it or not, this is the first time I’ve ever had someone approach me in ANY way during the course of my career and tell me that one word I used bothered them. I think I’ve maybe offended one other person with my “brazen authenticity”, but for the most part, people either like me or they don’t. I can’t control how I affect others. I’ve mellowed over the years (sort of-ish) and curse a lot less than I once did, so I found myself staring at this message for a while, pondering how to handle it. Under normal circumstances, I wouldn’t have replied in such a polite fashion, but I was incredibly polite. I let him know, in no uncertain terms, that HE contacted ME, and that if someone takes issue with a word I use, the issue lies with them, not with me. I’m not so sheltered that people have to curb their words with me. I’d be more concerned with the tone of voice you use, because that’s something I am more inclined to get in someone’s face about.
On the Internet, unless you’re on YouTube, you can’t really pick up on tone from people you don’t know. I have relatives who I communicate with who I am positive do not pick up on my tones when we speak. If they did, they’d stop talking. I have several tones that are “warning tones”. My voice drops several octaves and my responses become icy, or short. A lot of my text messages are “warning tones” because I’m probably pissed off at the other person for being nosy, presumptive, rude, disrespectful, hurtful, etc. I don’t always pursue my anger towards someone if I know how it will be received. It’s not an easy choice to make, but it’s knowing who and what to argue about. If someone keeps talking or texting through the “warning tone”, I do not feel sorry for them when they inevitably incur my wrath.
I have many different tones to how I speak and express myself. There’s my “dry tone”, which is all about timing. In my family, we refer to it as my “dry, British humor”. It’s my Judi Dench tone, along with the accompanying expression, and sometimes I throw in the accent for good measure. It can be delivered in a myriad of ways. There’s my “funny tone”, my “sarcastic tone” which are also, all about timing and delivery. What I find interesting is how people who know me well are never entirely sure which tone is which. Whereas my brother KNOWS if I’m being a smart ass or just being me. He knows my “warning tones” because he will often remind me, when I use them, that stabbing someone with a fork is illegal. He can even pick up on it in a text message. He gets me, even though he often pretends not to.
Nine times out of ten, I get accused of being sarcastic when I’m simply stating the obvious. That’s when you know, for sure, that a person is making an assumption. Don’t make assumptions via text message, because you’re probably wrong. I simply don’t have time in my day-to-day life to use a “tone” via text. Unless you’re an absolute moron, I’m probably just stating facts. No one said I’m not rolling my eyes while swiping my reply. I might be, but the other person can’t see me and that’s probably a good thing, though I wouldn’t shy away from rolling my eyes at them if they were in front of me. I’m not two-faced.
My daily vernacular is a combination of varying expressions, both in English and other languages, along with wit and measures of sarcasm and honesty. In certain situations, I dial myself down approximately five to ten percent, because I have to filter myself with the other person. I don’t like being unable to fully be myself, but sometimes it’s a necessary evil.
A family member pushed my buttons last winter. After giving them ample time to “get over themselves” and apologize, they continued to treat me like shit and be rude and dismissive. Publicly, they behaved like nothing had occurred. Because this person married into my family, I have to shield my actual blood relative from the incident, and my subsequent feelings. But first, I wanted to verify if the behavior was normal, so I asked this person’s sibling, with whom I am equally close to, if this was normal. They told me “That hasn’t been my experience.” and proceeded to ask if I had said something offensive or hurtful, leading the person to respond negatively to me. I had done no such thing, and I found the question borderline absurd. They quickly dismissed the subject after I replied that I’d done nothing but be nice and kind, and went back to talking about themselves (Yeah, that’s my family. I wonder if group rates are offered in family therapy…). I have now spent over a year shielding this family member from my true feelings. Someone I respect said “Well, you’re keeping the peace because you don’t want to lose another friend.” I stared at him blankly, because he clearly forgot who he was talking to when he said that. “Keeping the peace” isn’t how I do things. That’s “people pleasing” behavior, and I REFUSE to do it.
Since the initial incident, I have tried my best to be polite to this person, but I’m sure I’m failing miserably. My concerted effort has clearly not been well-received because even after sending this person a birthday card, something I did NOT have to do, I’ve continued to be treated as a threat. However, I have to be honest with myself about how I feel. I cannot be fake.
Fast-forward to last week, when I received a text message inviting me for Passover. Normally I am invited at the last-minute each year to most holiday occasions, and while I consider the invitation supremely kind and genuine, it’s the last thing in the world I want to reply to. I’m not known for my diplomacy. I know I can’t say what I truly want to say in response, so naturally, that upsets me.
On pretty much any given day, the last thing I want to do is sit in a room with a group of people I don’t know and pretend to be interested in forced, polite chit-chat. It’s not who I am. Food is of zero interest to me, and people I’ve never met before rank up the list, too. I appreciate the invitation, but there’s no polite way to say “I’d rather remove my eyes with a melon baller.” On top of my very real feelings, there is always my health to consider. I try to be around as few people as possible with uncontrollable chronic migraines and all the other health issues I am currently trying to navigate. I just took my last round of antibiotics this morning, and I don’t even know if they helped, which is worrisome.
Chronic illness makes me unreliable for many events, especially anything short notice. I can’t tell you how many times I’ve had to heavily caffeinate in order to go to a doctor’s appointment or something else I committed to in advance. Inside, I feel like the biggest mess on the planet, but on the outside I don’t think people ever notice that something isn’t right. After all, the majority of people are only looking for visual clues. They’re not going deeper.
I ended up sending a very polite text reply to the invite last night. I was downright polite and borderline diplomatic (for me), but I didn’t get into any detail as to why I could not attend. If I’d been asked, that would have been a problem, but I wasn’t. Instead, I was told I am welcome anytime. I know it was genuine, so I was genuine in turn. I’m good with large crowds of strangers when I’m speaking in public or have a commitment, but there are still times when I will say no to such things.
This year, I need to spend the holiday focusing on my health, and giving myself a short break from all the craziness because I’m really suffering in terms of quality sleep. My body needs rest in the worst way. 😦 I won’t make any appointments those first few days (March 31st might have been a good day to get my MRI out of the way, but I’d feel bad doing it on a holiday.), but I do have things that I will need to get squared away during the following week.
Words are important in society. It’s how we communicate, because not everyone responds to non-verbal cues. I find that the well-placed word is crucial. It can be the difference between “keeping the peace”, should you enjoy the route, or starting a fight, but it can also be the difference between complimenting someone and making their day or going through life as an extremely unpleasant person. Each day, we make choices with our words.
No matter how you choose, I’ll be over here, maintaining my authenticity as a “Speaker Of Powerful Words”. 🙂
copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.