“Human is a suffered mind but an enlightened soul.” ―Santosh Kalwar
Have you ever wondered if you’re trying too hard? If you have to question yourself, then you probably are. But what if you’re being told that you aren’t trying hard enough? It’s incredibly confusing, and downright counterintuitive, to have someone tell you you’re not trying hard enough when they don’t actually see how hard you try to begin with. When they only see a small percentage of your daily battle. Alas, welcome to my world where I’m never good enough, not unless I’ve somehow done something magical to meet someone else’s approval for the week. And even that is never truly “good enough”. I’m constantly met with a disapproving face or attitude, or something to let me know what a complete and total letdown I am. If you can explain to me how that is “being supportive”, I will buy you a fucking lottery ticket.
I am a firm believer that if you truly love and care about someone, you use your words. When someone is going through something horrible and you can’t be bothered to check in with them and see how they’re doing, but you can be bothered to talk to them about nonsense, there is no way in hell the person feels loved, cared about, heard, etc. They will NOT come to you with anything serious because you’ve already proven to them that you don’t take them seriously; that their life, their pain, suffering, etc., is a fucking joke to you. If you want your love and concern to be taken seriously, you have to bring it to the table. It cannot wax and wane like the moon.
I absolutely HATE hearing anyone tell me they “don’t know what to say to me“. Good. Say NOTHING. Be silent. It tells me everything I need to know, truly. By being silent, you’re reaffirming what I already know.
People who never ask how I’m doing, but are happy to come to me with their issues drive me INSANE. It makes me feel even more invisible. There’s never even a polite “Hey, how are you doing?”, it’s just “Let me tell you what I’m going through.”, because apparently the world revolves around other people and their idea of “problems”.
Here’s my take on this: If you’ve got a roof over your head, money in the bank, a good job, a working vehicle, food, health insurance, clothes in your closet, money to buy medicine if you aren’t well, and can pay your bills each month without ever being broke, and you’ve got the majority of your health (or all of it), then I genuinely don’t want to hear your “privileged people problems”. If you’re sick, suffering, struggling, truly battling something real, and understand how hard it is to survive in this world, then I am more than happy to listen, but I can’t do the privileged bullshit crap. If your wealthy family can bail you out of a problem in a New York Minute, then I have a hard time relating because if I need to be bailed out, it’s probably because I’ve finally killed someone. My “family” has made it clear that they enjoy seeing me suffer and do not care about my pain. That my losses are basically icing on the cake for them. Does that sound loving to you? That’s because it isn’t love; it’s hatred. I genuinely hope that one day, one of them needs a bodily organ and I am the ONLY match in the world that could save their life. I’d rather give that organ to an inmate on death row.
Call me crazy, but I prefer to be spoken to, not AT. I honestly need to start charging people for the “therapy sessions” I am providing because it’s gone too far. If they respected my time, then maybe by receiving a weekly bill, the 10:00 PM-5:00 a.m. texts about bullshit would stop. The hours of Facebook Messenger nonsense would stop. If a pop-up message comes up while I am writing, you’ve just cut into my hourly rate as a writer, which is quadruple my editor’s rate. If you interrupt me while I am writing with dramatic bullshit, I should be able to bill you. Unless you’re my brother, best friend, a doctor, or the two women I call sisters, then you probably don’t need to be contacting me after a certain hour unless there’s a death-defying emergency (and how many doctors would be calling after ten o’clock? None I know.). Truth be told, I’ve lost my ability to care.
My cousin had the audacity to tell me that he & his wife are “always here for me because ‘that’s what family does for family'”. I wish all of you could have seen the look on my face when I read that message. The one time I asked him for a favor was well over two years ago. He made excuses and said no, all after having given me the “I’ll do anything for family” rhetoric many times before. Clearly this is a selective thing. “I can be there for you when it’s CONVENIENT to be there for you.” That’s what it really means. That’s why it annoys me and that’s why, ultimately, it pisses me off.
A lot of his invitations over the past year or so have been super last-minute and I’ve had to say no. You can’t give me 24 hours notice for anything and expect me to show up. You’ve got to give me a month or so. I must have the physical, mental, and emotional energy, and you have to know a holiday gathering of 50+ people is NOT how I want to spend my time. I’m not married to you, or your wife, and I am not obligated to be a part of these gatherings. I’m family, yes, and thanks for including me in your thought process, but I’m pretty much always going to say no when you ask me at the last-minute.
Now it may have bothered him that while I did not attend his son’s Bris after being given four days’ notice (I was sitting Shiva), I did turn around the following weekend and meet up with my sister, Britt, in Boston. He didn’t say anything and quite frankly, Britt and I had those plans for MONTHS. However, not once has my cousin even offered to meet me halfway. He could be in a neighboring town and not even say “Hey, do you want to get a cup of coffee.” If I did that to him, I’d never hear the end of how I was in his part of the city and didn’t stop by. Drama, drama, drama.
I firmly believe that if you really want to be there for me, you will be. He speaks for both of them (I HATE when couples do that. It nauseates me. I can’t speak for someone else; it’s rude. That person has a mind and opinions of their own. I’m also smart enough not to stick them with my family! Escape while you can!) and I wanted to respond and say “There’s no way in hell I am going to ask either of you to be there for me! You have a new baby and while your heart might mean what you’re saying, we both know you’re not going to show up for me, so thanks for the sentiment, but you won’t be hearing from me.” Like, EVER. (To quote Taylor Swift.)
Have I mentioned I can’t stand his wife (I’d NEVER say this to him and hurt his feelings. For some unknown reason, he thinks she walks on water and performs miracles. Ad nauseum.)? Now that she’s not pregnant, she’s behaving differently towards me, but I will probably never be able to get over her bitchy rudeness directed solely at me while she was pregnant. I checked with other family members to see if it was her normal behavior or an isolated incident and apparently she fits in with that side of the family really well because it was directed only at me, which makes me extremely wary of her. I have made all of my close friends promise to have a “Come to God” meeting with me if EVER I behave like that towards the kindness of others while pregnant. One of my closest friends said to me “You’re not a piece of shit, so I can’t imagine you ever being so ungracious to someone. She was really fucking rude to you.” Sometimes, it’s good to get that extra feedback so you know you’re not crazy.
I’m going through all of this disturbing, upsetting misery day in and day out, and I legitimately hear from three people daily because they actually care about me, and my best friend e-mails me on the weekends. Everyone else is purely radio silent, until THEY have a problem and then it’s all about them. And like I said, they don’t ask how I’m doing, they just start talking at me. Not only am I invisible, apparently, I also have zero emotions or emotional needs to be met. It’s always nice to know this is how others perceive me. As a sounding board. Or a door mat for people to wipe their feet on, so they can walk away feeling better about themselves.
Over the weekend, I ducked into PetSmart to grab a bag of cat food. There was the most gorgeous green, orange, and yellow parrot there. Birds don’t normally come up to me, but this one did. They don’t usually make noises and do tricks for me, but this one did. It made me emotional, because I felt like this bird understood me. I wanted that bird. I’ve met so many birds over the years, all different types, all different sizes, but I’ve never wanted to take one home before and have a new friend.
I feel completely abandoned by Cat and Kitten. They used to spend time with me and care for me, or they’d hang out with me and be loving, but now they eat and sleep, and at three PM each day, they come downstairs and start staring at me, waiting to see how they can con me into giving them their dinner early. Mind you, they do NOT starve and they have food and fresh water all the time, but they’ve become regimented in their meal-times and it’s seemingly all they care about. They have their separate spaces, their cat beds, and zero interest in what I am going through. This, I am certain, is why people have dogs. Alas, I’ve got no energy for one, or the room. Or the patience and tolerance levels required. At this point, I’m best suited for a pet rock, and even that is a stretch. 😦
I’m quickly becoming one of those people who is going to spend the rest of her days talking to herself, getting answers back. Oh wait, I already do that! Excuse me while I go back to producing a flood of tears.
American Horror Story: Lisa’s Life
copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
“Human is a suffered mind but an enlightened soul.” ―Santosh Kalwar
“Every age, every culture, every custom and tradition has its own character, its own weakness and its own strength, its beauties and ugliness; accepts certain sufferings as matters of course, puts up patiently with certain evils. Human life is reduced to real suffering, real hell, only when two ages, two cultures and religions overlap. A man of the Classical Age who had to live in medieval times would suffocate miserably just as a savage does in the midst of our civilization. Now there are times when a whole generation is caught in this way between two ages, two modes of life, with the consequence that it loses all power to understand itself and has no standard, no security, no simple acquiescence. Naturally, everyone does not feel this equally strongly. A nature such as Nietzsche’s had to suffer our present ills more than a generation in advance. What he had to go through alone and misunderstood, thousands suffer today.” ―Hermann Hesse
*Might have shared this quote before, but I’m honestly not sure. Regardless, it felt appropriate today.*
Every year, usually around mid-April, is the countdown reminder from every company I’ve ever done business with, or might do business with in the future, that Mother’s Day is fast approaching. Last year, it angered me to the point where I unsubscribed from about 20-30 different mailing lists. I just couldn’t take it any more. The e-mails were daily. Daily. Sometimes, there were three or four a day. How much more business do these people need to drum up?! Was it a slow year?!
This year, Mother’s Day falls out on the day when I normally do my big grocery shopping, which requires hitting three different stores, usually, to acquire everything on my detailed list (which I usually organize by store, so I don’t forget anything major). If I keep my head down and I just focus on that list, I should be able to avoid as much of the hoopla as possible, but the pain in my heart will never go away.
There have been years where I couldn’t even get out of bed at the mere thought of facing other people on Mother’s Day. And the worst part is; Few people acknowledge this or discuss it. I refuse to be one of those people.
It’s unbelievably rude when people dismiss your feelings, especially in regard to something like this. When someone tells you to “get over it”, it might actually be wise to consider the source and/or re-think your relationship with that person. Being dismissive of someone’s pain, be it physical, mental, or emotional, is never acceptable.
Being a Motherless Daughter is painful. There is this enormous piece of me missing, and I assure you; no one gives a damn. No one else’s life stopped after my mother’s death, no one else mourns her daily, and that makes it so much worse in my eyes.
I remember how I felt at her funeral. I probably know her eulogy by heart because I only had a few days to write it, but every word was from the heart. I did her proud. I try to keep making her proud every day of my life.
The things I could talk about with my Mom are now things no one else on this planet would understand. Instead of having a person laugh with me and enjoy my insight and sense of humor, I am criticized for having a sense of humor that others do not understand or appreciate. Technically, that’s their problem, not mine. There are so many times I want to tell her about something going on, and I can’t. I know she is looking down on everything happening in my life and is now the “All-Seeing Eye”, but I really hope she sees how I am being treated and the character of others. I hope she sees and does not forget.
My mother always taught me to forgive, but never to forget. “Forgive for yourself,” she’d say, “So you don’t have to carry the hurt and allow it to harm you, but don’t EVER forget.” Forgiveness has become downright impossible in the wake of her passing and other terrible things that have occurred since that fateful day. There are always things you can never un-hear, un-see, un-learn, etc. There’s far too much you cannot forget. My mother was a nice, kind, caring person. I’m not all that nice and my kindness and ability to care is limited.
My Mom used to tell people she couldn’t remember what she wore two days ago, but that “My daughter remembers EVERYTHING.” My short-term memory is shit, but my long-term memory is eerily accurate. So you can question me, but don’t, for a single second, try telling me I’m wrong. I’m many things, but wrong isn’t one of them (I have a key-chain that says that verbatim.). Not when it comes to most things. And I openly admit when I am wrong, which many people won’t ever do.
Last year, right around the start of this month, is when my blackouts began (at least I’m pretty sure that’s when they started. In fairness, it took a few months before I was aware that I had lapses in time each day.). Is it somehow tied in to my mother’s passing and all the other death that has effected my life in the month of May? It’s possible. I have an appointment at the beginning of next month and I will certainly ask the doctor if he thinks it’s a possibility. If it’s not something triggering me, then it is something neurological, and that’s even scarier to me. I doubt an MRI will show damage, but psychologically, I suspect it’s a form of trauma manifesting itself.
I wish there was a measure of sensitivity surrounding this subject, but there really isn’t. I can attend the local Motherless Daughter event, or I can stay put and mourn on my own. I don’t think I can actually focus on other people’s stories at the moment, so it’s probably best I just isolate myself, except for the fact that I am ALWAYS isolated and alone. The effort I put forth not to be is always slapped down, always insulted, and is never good enough. The more negativity I hear, the more triggered I become. Someone might think they’re paying me a compliment, but I know an insult when I hear one. I’m NOT stupid, and I will walk away or disengage when a person is acting like an asshole or just plain being disrespectful.
One of the reasons people like and respect me is because I’m always the same person. Whether it’s on the phone, in a letter or e-mail, interacting on-line, or when you meet me or spend time with me; I don’t change. What you see and read is precisely what you get. I’ve had friends tell me precisely how much they enjoy that and respect it because they never have to worry how I am going to be because I’m always myself. When my friends spend time with me, they don’t understand why anyone wouldn’t love me. I am most at ease and most myself when I am with them. I wish they didn’t all live so far away, but I do have a very close friend visiting next month from California and I am SO excited to spend time with her! We met through my writing, as well as hers, and have been friends for five years. It seems like a much longer time period because of the bond between us, and I’m really looking forward to whatever adventures we get to share. Right now, having something to look forward to is all I’ve got. I don’t really know what I will do after she goes home. 😦 I do know I will miss her, though.
I might not write anything on Sunday this year, and if I don’t, I hope everyone will understand why. I might reblog something I’ve written in the past if I have the time to search, but if I am silent, I hope no one will take it personally.
I am still recovering from last week’s Urgent Care visit for my migraines. My IV “wound” is nearly healed, but I learned my lesson in regard to how to handle this horrible pain from here on in. I hope the neurologist I see is a good one and that he will have answers for me. I’ve been doing extensive research to make sure I go in armed with information to try and come up with a plan that we can both agree on.
And so, the countdown begins. On the plus side, I’m glad to be writing in a successful, productive way. For those of you who’ve been super supportive of this project (Lillian & Steven), please know how much it means to me.
Have a lovely Friday, everyone!
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
Things I Hate About Being So Sick At Such A Young Age & Not Being Understood
Over the past few months I’ve come to realize I’ve foolishly handled the severity of my illness for years. Over the past fifteen months, I have gotten worse. In turn, people’s expectations of me are way too high. They see me power through things I shouldn’t be powering through, which leads them to believe I’m okay when I am anything but. That’s about to change because I’m ready to admit what I can and cannot do.
I cook at least 5-6 nights a week, sometimes seven. I have to stop doing that. I have to stop pushing myself to have dinner on the table like an obedient housewife, of which I am not, because not only do I feel unappreciated in my efforts at times, but I spend 8-12 hours sick as a fucking dog each day (and every day before it) and I’m still dragging my ass into the kitchen each night like a moron. I’m over-doing it.
There are so many mornings and nights where feeding Cat and Kitten makes me want to die. Bending down to put their plates onto their cute kitty place-mats, picking them up to wash the plates when they finally finish (especially Cat, who is SUPER PICKY about what she’s given from one day to the next.). It’s too much. The pain in my spine, lower back, and legs screams in agonizing protest, and like an idiot, I keep going. 😦 There are far too many mornings I drag myself out of bed solely to feed them, and once I’m up, I feel like I should be doing something, so I force myself to do something, even when I am too sick to be doing anything.
Laundry should be easy enough, but sometimes it takes me a few days to retrieve my clothes from the dryer. It didn’t used to. It kills me, because it feels so incredibly lazy. I used to do 5+ loads a week and not bat an eyelash. Now, anything involving stairs makes me nervous. Especially after my experience of getting locked in the basement and having to PRAY the door would open. I called someone when it happened (I try to make sure I always take my cell phone with me) and got their voice mail. I freaked. I had to calm myself in order to get the door to finally open. Ever since that day, I’ve been extremely cautious.
One morning, in some of the worst pain EVER, I stood in the shower and wondered how badly my legs needed to be washed. I had one of those moments thinking “Can I just pour soap on them and rinse, or do I have to bend down? I CANNOT bend down.” It was the worst feeling in the world, because I was already incredibly shaky from the pain and mindful of the glass doors. I’ve fallen in the tub a few times and, by the Grace of G-d, escaped with only bruises and soreness to show for it. I was having immense trouble bending down. Serious trouble. Then I thought “Where the hell is the back brush? How am I going to reach my back?!” I turned the water off and wanted to cry. I stood there for a few minutes, pretending I was letting the conditioner do its thing, but ultimately, it was scary and upsetting. Then, like an absolute moron, I forced myself to be fully clean; legs, back, and all, and after putting on makeup because, for once, I actually cringed at how pale and sick I looked, trekked to three different grocery stores to get everything on my shopping list. At two stores I rang up the entire order myself, bagged each item, and put everything in the car. I did this with physical pain from Fibromyalgia AND a horrific migraine on top of it. I wanted to be on a morphine drip with someone cooking my meals for me. Alas, that never happens. If I want something done the way I do it, I cannot rely on a single soul except myself. My cannon fodder cousin offered to “make me a meal” (When this sick, what are the odds I’m going to travel thirty minutes away for dinner?). I did not have the heart to tell her it would take roughly fifteen seconds before the knife and spoon are out of her hands and I’m the one doing the actual cooking. I’m a kitchen control freak. Every boyfriend I’ve ever had who has tried cooking for me has ended up standing back with a glass of wine because I do not have the patience for how another person works in the kitchen. It usually takes them an hour to realize I’ve completely taken over the entire meal, and the romantic concept behind it. I’m not a trained chef, but I might as well be once there’s a large, sharp knife in my hand and an idea. Let’s leave the good stuff to the professionals. 😉 I’m a picky bitch, just like Cat.
I have no emergency contact. Outside of my brother, who isn’t extremely reliable where I’m concerned, no one knows my blood type, the extent of my health issues, or my wishes regarding anything life-ending. No one has ever even asked me about these things. My cousin offered to be my emergency contact (after lecturing me about wills, trusts, and things that, quite frankly, nauseate me. She thinks it’s practical. She does not understand that I’ve lost two parents and I’m not interested, at the moment, in her OCD practicality.), but I know full well she will NOT drop everything to answer the phone if contacted, nor will she be physically present in an emergency. She means well, she has a good heart, but she doesn’t understand that this is a big deal. She & I disagree on so much, she’d likely leave me a vegetable if left to her own devices. Everyone else, except my brother and best friends, would pull the plug. Yeah, I feel the love, too. <shaking my head in disgust>
The questions I get asked on a regular basis leave me so fed up, I want to scream.. Oh.My.Fucking.GOD! There is something fundamentally wrong with people. If I’m in pain, it isn’t because I had a sore gym day, it’s because I have an incurable autoimmune disease that haunts my every move. Don’t ask me “Is it from your Fibromyalgia?”, as if you truly are clueless. I often want to say “No, I like walking like a 90 year old woman with osteoporosis. Clearly, I’m FINE.” I don’t feel the need to spell it out for you every single day. It’s painfully obvious, no pun intended. It drives me INSANE. “Is that from your migraines?” Really?! I’m walking around saying how sick I am, throwing up, and you’re asking me questions? Don’t. Stop and think about how it makes me feel. You don’t need to make small talk with me over my suffering and then blow it off like it’s no big deal because it isn’t YOUR life or YOUR pain. G-d help me if I ever behave like that when someone is suffering in my presence! I’d be ashamed.
When I have declared how bad a migraine is, PLEASE do not make enough noise to rival a sixty piece marching band so I can spend time with a pillow over my head and ears (still hearing every fucking sound clearly) wondering whether to kill you and tell G-d it was an accident or to go to the emergency room and beg for medical help. Why do people think they’re quiet when they’re actually noisier than anyone else I’ve ever met?! The excessive noise may not be intentional, but it certainly feels like it is. It’s also incredibly disrespectful. If I don’t want to bother someone with noise from anything, I wear headphones. It’s called manners.
There are days I can walk eight miles and feel good, with maybe sore calves later on in the day or the following day, maybe a charley horse, maybe achy feet, and then there are days I am practically crawling to get to the bathroom. Does that seem normal to you? It isn’t.
There is ZERO happiness, joy, or fun in my life. I mean that. For months I have wanted only to go to the Da Vinci exhibit at the Museum of Science. I asked several people to go with me. No one wants to go, so I was actually told “Why don’t you just go by myself?”, as if that’s an easy thing for me to do these days. I explained that without a second person with me, my health is too unreliable to go into Boston and walk through an entire exhibit solo. It closes tomorrow, and I will likely never get close enough to something like it again. Unlike a movie, where I can rent, borrow, stream, or buy the DVD whenever it’s released, this is a once in a lifetime opportunity. Not being able to pick up and go like I once did makes me feel utterly worthless, and I’m heartbroken that I’m missing out on things that are important to me. What is the point in living when you cannot do anything that brings you a small measure of happiness? Who in their right mind would want to live like this?! NEVER tell someone that it’s “all in their head”. You truly don’t have a clue how painful this is.
No one, and I do mean NO ONE, ever asks me what I’d like to do, or cares enough to do so. Every single free moment revolves solely around them. I shouldn’t have to spend a minute in a week crying over how badly I am treated, ignored, abandoned, isolated, or hurt by others, but I do.
My OCD is off-the-charts. I’ve alphabetized the herbs and spices in the pantry, dismantled the interior of one cabinet and put everything back in order, and under normal circumstances my books, CDs, and DVDs are all in alphabetical order based on genre. If I start color-coding my clothes, I hope someone stops me before I get out of hand.
Anxiety is part of Fibromyalgia, though not everyone sufferers from anxiety or panic attacks. For me, it began in 2002, though I suppose I’ve always been anxious in one form or another. Back then, when my father’s cancer returned for the fourth time and he was undergoing IV experimental treatment in the hospital, it triggered off something fierce. It took a full year of breakdowns in the shower, so no one would hear me upset, before admitting I needed to fill the prescription from my doctor and take the first pill. I get horrific panic attacks in my sleep and wake up unable to breathe. My body is constantly in fight or flight mode, and it is terrifying.
I’m a former gymnast. I somehow managed to retain nearly all of my flexibility and upper body strength, but I will likely never participate in a sport again. I miss being about to throw my body into the air and do impressive things. I miss the parallel and uneven bars. I miss the balance beam. I miss volleyball. I miss archery. I miss being able to ride a bike. I miss playing football with my male friends. I miss skating; which was the last thing my Grandfather taught me before he passed away. I miss being the strong, athletic girl I once was. It breaks my heart when I see and feel myself struggling to walk, and it kills me each morning as I struggle to get out of bed.
For several months last year, I would be overcome with severe weakness and would not be able to account for 2-6 hours of each day. Over the past few weeks, it’s started happening again. Am I alarmed by this? Yes. I’m even more alarmed by the fact that my application for insurance still hasn’t be processed or approved! Yes, I will likely go ballistic on someone soon because I’ve had enough of their excuses. They’ve had more than enough time to make a decision, especially after lying to me about the first application for six months. “We’re backed up.”, MY ASS. What little patience I may have had is completely gone.
The cost of the only prescription I take jumped from $21 to nearly $60 in a little over a month. I made a few phone calls and got a lot of bullshit excuses about how the cost to the pharmacy probably went up. I had to transfer it to the only pharmacy in the area that will charge me less than $15 for a prescription that is a generic and older than I am. The worst part? My doctor had given me a new prescription with three refills. It’s a controlled substance, so he’ll now have to redo the script with the new pharmacy, and I’ll potentially be out of the medication by the time he gets around to it. The current prescription can remain on file until the pharmacy gets their head out of their asses! It will also make me worry a little less because that’s eight months of coverage medicinally, which will give me time to find a doctor here, who I am almost certain will try to yank me off the medication I need and have taken responsibly, as needed, for over ten years. If I end up in any type of drug rehab, please know that doctors are irresponsibly yanking patients off of controlled substances and giving us no alternative whatsoever. The “war on opioids” is bullshit with nowhere near the amount of deaths being reported. Heroin is the problem, pain patients are NOT.
I am typing this after 2:00 a.m. I cannot, for the love of G-d, sleep properly. Not without taking a larger than normal dose of Melatonin, for me, any way, and going to bed before 9:00 PM, or just slightly later. My brain is so hyperactive and full of thoughts that there is no such thing as “calming down”. Meditation does not work. Breathing exercises do not work. And it doesn’t take long until I lose my patience and go back to writing, or grab the nearest book, even if I’ve read it fifty times.
Life will never go back to “normal” because this is not something that will go away. While there are vaccinations and cures in the pipeline, they may never see the light of day without FDA approval. Experimental treatments and CBD oil might be the only viable options left to me, and that is solely for the Fibromyalgia. I am currently trying to get into a clinical trial for migraines, but there are no guarantees I will be put on the medication they’re testing, and if I am, I’d have to worry about potential side effects of a medication that is basically making me someone’s guinea pig.
I am not okay. I wish, on occasion, people would dial down their level of selfishness and actually pay attention to the fact that I’m so far from okay, I want to scream. I wish someone would actually ask me how I’m doing, and listen to me. I am so fucking tired of biting my tongue or walking around shaking my head in sheer dismay.
I do my best. Every single day there is someone, somewhere, to tell me my best isn’t “good enough”, to talk down to me, or to treat me as though I am beneath them. I would like said people to collectively live in my pain for six months. I’d genuinely like to watch them “get over it”, “stop kvetching” (“To kvetch”, in Yiddish, means “to complain”. They WISH I complained! I fucking walk on eggshells over how much I suffer, and I’m NOT going to do that any more.), or even better “stop having a temper tantrum like a five year old”. When you do thoughtless, disrespectful things and treat me like I’m not a person, you’re inevitably going to push me to the point where you hear about it. I have scars on my tongue where I’ve damn near bitten through it. I refuse to keep holding it all in.
Where is this so-called “human compassion” I keep hearing about? It barely exists. This is such a selfish, self-absorbed world and it is sickening. When was the last time you did something for someone else without gaining anything in return? Because THAT is compassion and kindness to me. Doing something for someone and then throwing it back in their face is NOT compassion, nor is it kindness. Anyone can be a piece of shit. Try not to be one. No one should have to remind you that normal people don’t behave in such a manner, but I’m doing it because I get treated that way and I’m sick of it.
A few days ago someone forgot who they were talking to and insinuated that I am a “people pleaser”. They must have me confused with someone else because I don’t give a damn about pleasing anyone, but I am NOT going to change the core of who I am, as a decent human-being, to make someone else feel better about themselves. You’re a lousy friend to people? That’s fine; I choose not to be.
The halfway decent-looking girl you see, who took the time to put on makeup, who, after way too many months, got a haircut and touched up her roots (being a brunette isn’t all it’s cracked up to be sometimes) is not “vain”, “selfish”, “obsessed with her looks”, “lacking spontaneity”, or any such nonsense. She is me. I’m sick, I’m suffering, and I don’t have to add insult to injury and look like a fucking corpse, lest some rogue mortician thinks he’s lost a body and takes me away!
If you truly care about me, prove it!
Don’t say you love me unless you truly mean it. And don’t think you can treat me one way today and another way tomorrow. I might not say anything about it immediately, usually to give you time to self-correct and/or apologize, but I will wait for the proper time to let you know precisely how I feel about being spoken to like some kind of untrained dog you keep around.
Not every person is who and what they say they are. Not everyone is genuine. I just happen to be hyper-aware of the motives of others.
I am often short-term forgetful. It’s completely unintentional, yet people actually get annoyed that I haven’t done something or can’t remember something that, once it hits my long-term memory, is pretty much good to go until the planet explodes. Being hostile towards me over a short-term glitch is just plain rude. Especially when these very same people would lose their heads if they weren’t attached. I know where mine is.
I have no choice but to plan, and even my plans aren’t set it stone. I cannot, under most circumstances, commit to anything last minute. People get offended by that quickly, so they stop asking you to do things. Or worse; they keep asking. As if you’re magically going to heal and be able to run a marathon.
The other day I noticed precisely how bruised I am. I usually find bruises on my arms and legs, here and there, but this is bad. I had gotten out of the shower and saw something purple on my back when I moved the towel. I turned in the mirror and was utterly mortified. Each morning I usually ask out loud “Was I beaten in my sleep?” My back is covered in black and blue marks that actually DO look like someone beats me. I’m always saying how much my back hurts, but this is a first. I stared at them and noticed a pattern; they’re from wearing a bra. Is it too tight? No, or the bruises would look much worse. The others are in a spider-web pattern across my shoulder blades and there’s another one low on my back that looks as painful as it is.
It’s been a long time since I’ve been heard, understood, or listened to. This disease has robbed me of people treating me like a human-being.
I never know what else it will take from me. There is no pain relief, there is no end in sight, and it’s scary navigating this alone.
I’m sure there are other things I hate, but today, this is all I’ve got.
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.