“We have come here together so that you might know, through virtue of your own pain, your own hopelessness, your own fear, your own darkness and the lie of powerlessness, the very actual power of your own will, of the will of your soul.” ―Jennifer DeLucy
May. The month of darkness. The month of flashbacks, nightmares, anger at being robbed of loved ones… It’s hell. I suffer silently; no one is particularly interested in what I have to say. I remind myself it isn’t personal, some people simply aren’t full-fledged human beings. C’est la vie.
Thirteen years ago tonight, my mother’s heart gave out. I got the phone call, “We’re trying to revive her, but…” The BUT was my mother’s DNR; a point of contention between us for years. I had power of attorney and I remember saying, “Screw the DNR. If she can be revived, you save her life.” An hour later and I knew. I remember looking at the clock, in pure silence, and knowing the exact moment when she left. When I received her death certificate, the time was not a shock, but it jolted me. My life was permanently altered. I feel like I’ve lived a nightmare almost every day since.
One of the most important messages my mother instilled in me was to ALWAYS be honest and speak up for my beliefs. I am not a passive, gullible, peace-keeper; I was built for war and educated argument. My mother knew, before I was born, that I was strong and a force to be reckoned with. That’s the kind of daughter she wanted; one who would always speak her mind, one who would not pretend, and one who wouldn’t take shit from anyone, because she’d know her worth and would not be afraid of walking into rooms and being a strong, powerful, determined individual. I suspect she got what she ordered. 😉
My parents taught my brother and I to focus on facts, and to know when we were being lied to. Not everyone is blessed with intuitive education. I was not taught to hate. I am an intuitive person with a mind which pays attention to details others might miss. Micro-aggressions, body language, any shift in behavior or verbal tone is something I will notice. I am grateful for these things, because I know other parents weren’t teaching such things, and because much of this knowledge has saved my life in many situations.
My mother was the best. I was blessed with someone truly devoted to her children, imperfections aside, because NO ONE is perfect. We’re all human.
I miss you. There are no words for the amount of pain I am still trying to work through. Time does not heal a damn thing. Not in this situation.
I’m still not doing too great post-treatment. I’m either sleeping too little or too much, and the amount of pain I am in may last another 7-10 days. The plus side of this is that I was approved to start taking Nurtec. I’ll figure this out as I go, but thus far, I haven’t heard a single negative thing about it. Considering all the migraine sufferers in the world and the suddenness of the CGRP drugs being pushed through slightly over two years ago, only hearing positive things is a lot like finding a unicorn. I will know more when the hospital pharmacy delivers it to me in a few days.
Beyond this, I am trying to ease up on myself. As someone who is harder on herself than anyone else could possibly be, I’m trying to take it easy. I am trying to tell myself it’s okay if I can’t do something immediately. I have to tell myself that if I needed to sleep, then that’s what I should be doing. I’m about 20% less stressed since I started this mantra of putting less pressure on myself to get things done, but that doesn’t mean anxiety and stress don’t rear their ugly heads, because THEY DO.
Today was an epic fail. Initially, I couldn’t fall sleep, so I took medication my doctor prescribed, at a higher dose that we’ve talked about over the past month or so. It doesn’t always hit me hard (or at all), but this time, it put me down for the count. I was awake just long enough to drink a lot of water and ended up back in bed for seven hours. This was after getting roughly eight hours of sleep, so clearly, this dose is too high for me right now. I will cut the dose down and see where that takes me, but I’ve already discussed the fact that I detest relying on it every single night. In most cases, it’s a temporary prescription, but I’ve been on and off of it for the better part of eight months. I haven’t taken it consistently because I don’t want to be dependent on any medication. It is frustrating because there doesn’t seem to be an exact science to the dosing (for me). The goal was for me to be sleeping at night and have better days, but I can’t have better days if the medicine is still in my system and putting me back to sleep. In hindsight, I do think I needed that extra rest. The downside? I am worried about when I will, inevitably, fall asleep and wake up. I don’t have to be anywhere, but I do have a considerable amount of work to get done. I know it WILL get done, but for this week, at least, I have to ease up on stressing myself out and making my anxiety worse. It’s so much easier said, than done.
There’s no crystal ball to tell me how the next few weeks will pan out, but I am hoping, and praying, for better days. I’m not quite there, yet.
This was a full blown post and the written content didn’t publish. I will try to recreate it later on.
Started a post early this morning that isn’t done yet. When a migraine threatens to birth enormous puppies of agonizing torture through your skull, you need to sleep and hope it’ll help. Unfortunately, I woke up and it was worse, so I left a message for my doctor’s office to get back to me. My abortive drug is failing me, so maybe my doctor can recommend a newer one. I’m pretty fed up with her inability to return a phone call in a timely fashion. Over six weeks isn’t even remotely close to acceptable.
I will try to finish what I’m writing ASAP. I’ve probably made my decision already in terms of what to do and how to handle the issue, but occasionally I appreciate mild input.
Tonight, my major plan is to make dinner, hydrate as much as humanly possible, and go to bed before 10:30. I think that’s fair because I have so much to do and lost today because I’m sick.
It’s important for people who don’t suffer from chronic pain to understand that sick days are NOT an, “excuse”. I’ve NEVER used my illnesses as an excuse for anything. An explanation? YES.
If you’re an obsessive compulsive, Type A personality, you probably need to learn that you’ll catch more flies with honey than you will with vinegar. I don’t respond to outbursts, tantrums, and unacceptable rage behavior. I don’t respond to name-calling and accusations. Until I do, and then you’ll wish you hadn’t pushed this particular dragon. So when I say I’m sick and I’m trying to sleep, LET ME BE. My pain and suffering isn’t trying to inconvenience anyone. And if that’s how you think and you’re unable to comprehend true suffering, I strongly suggest you find yourself a good psychiatrist and therapist to help you work on your issues so you don’t dole out your tyranny over someone who is already doing the best they can. No one is implying you be a pushover, but pushing someone who is already sick enough means you’re adding to their pain. Is that REALLY who you want to be?
I hope you’re all well and doing the best you can given the circumstances. Today is day ten of my second round of quarantine. I pray this is resolved soon because this is a terribly unhealthy situation for so many of us. I’m glad to see companies stepping up to help with sanitizing and cleaning products, with producing ventilators, and all the people I know right now who are home sewing masks for their local or regional hospital staff. There are some damn good people out there doing their best.
Talk to you all soon.
If it comes at all… 😔 Yeah, I’m having a rough fucking week. I’m writing my thoughts and will be back with a full post ASAP.
**POTENTIAL TRIGGER WARNING**
I’ve reached a point in my mental health journey where I’m DONE. I’m not saying this lightly. I’m also not saying anything to seek attention. I’m just speaking. Period. It’s extremely important to be honest when discussing matters, such as this.
I’m sick of people, their snide, ignorant comments, the stigma of the uneducated, and I’m tired of all the excuses and bad behavior. I’m a human-being and I don’t want or need, “shiny, happy people” talking down to me. Who the fuck do some people think they are? 😠 At any given moment, you can be stricken, same as me. No one is immune.
In the past year, I have reached my maximum number of failed medications at around forty. Yes, you read that correctly. Forty drugs from the start of my original diagnosis, which was incorrect, until a month ago, when the final drug failed and made me wish I would just stop trying altogether. It was pointless. Perhaps I am, too.
I felt completely dead inside before starting this medication. I went into it 1000% unsure because I was preparing myself for the 50/50 possibility. This medication was an enormous risk. The failure of it made me sink. I looked around for quick sand, hoping it would swallow me up. I was, and still am, SO angry that this was other people’s “miracle medication” that gave them back some semblance of normalcy, if not restoring their lives entirely, but for me, it was yet another epic fail. If you heard me say this, you’d know I’m saying it flatly, with no inflection whatsoever. Speaking about it does not make me a “victim”; it just makes me extremely honest.
I’m SO unbelievably sick of people saying, “I’m here for you.”, or, “If I can help, just ask.” 🙄 I’m sorry, did I just roll my eyes out loud? Yeah, probably.
If you’re, “here for me”, then I would actually be seeing you or talking to you semi-regularly. If you want to help, find something within your means and do it. I am not in the correct headspace to give you an itemized list of “things that will help”.
When someone has the flu, you might bring them soup, juice, magazines, etc. Things to help them feel better or things to distract them from how awful they feel. Or maybe that’s just me. Why do people need a guide for everything they can research? For all the advanced technological access at our disposal, people never cease to amaze me with their utter laziness.
I feel ZERO comfort in reaching out, and I’m so sick of the word, “No.” when I do ask for help. I’m constantly being told I don’t know how to ask for help. I do, and asking is one dead-end at a time. I have stopped asking because I don’t have the trust to offer up anymore. I am not going around begging for people to care about me or what I’m going through. Because here’s the truth; “reaching out” is a fucking joke. If a person cares, they will reach out to you. And if they don’t, you have to understand that the majority of people have their heads shoved so far up their own ass, they can’t see a damn thing. Their world and yours do not mesh, and that’s okay. Rid yourself of those who do not come into your life on your frequency. You’re trying to grow and better yourself, and sometimes, that means growing apart.
In a world completely obsessed with social media, I decided to scale back quite a bit. By doing so, people did reach out to me, but ONLY so they could complain about things they’re going through. 🤦 It was very much a, “Are you okay?” and quickly became, “Because I have a lot to tell you.”, which made my head spin. It also made me angrier than a hornets nest after it has been kicked.
Why? Because the messages came from acquaintances, not my hardcore group of friends. I was put off by it, which might be slightly irrational, but I’m not going to sugarcoat how it made me feel.
If someone is expecting to see, “ALL of my posts” via social media, I’m mostly on Instagram these days. Some of those posts make it to Facebook, and some do not. It’s not the end of the damn world!
Whatever happened to asking a person directly, like a normal human-being? A phone call? A text? WhatsApp? Facebook Messenger? There’s more than one way to get in touch and stay in touch. Of course, you’d first have to prove you care and earn my trust to have access to my phone number for some of those methods of communication, but others are rather simple.
In the past year, I had a now former friend medication shame me. I was beyond suicidal at the time. I’m not sure if anyone knew, aside from my doctor. I wasn’t exactly shy about it, though. I was SO hurt by her comments about how I, “should stop taking that poison.” Yes, those were her exact words. If she tries to deny it, I have proof of her stupidity. I have her blocked on social media now because a REAL friend stands by you; they don’t judge.
This comment threw me for a loop. I read the initial message rule out in public, and I was incredibly insulted and hurt by it. Here I was, trusting her, and divulging something extremely painful, and she’s criticizing me. The ugliness of the comment is similar to telling a cancer patient to, “You should stop chemo. It’s poison.” 😠 No one does that though, do they? No, because they want their loved one to LIVE, to “beat cancer”. Apparently, people judge harshly when it’s medication they themselves have NEVER experienced.
Does anyone understand or realize that medication is often the difference between life and death for millions of people? I would NEVER tell someone to “Stop taking that poison.”, unless they were talking about street drugs, in which case I think we can ALL safely agree that it’s wise to get clean.
Instead of compassion, she showed me she’s an extremely ugly person, inside and out, which should have been the final nail in her coffin. Alas, when I schooled her, she didn’t apologize. Instead, she dug herself even deeper with her complete ignorance regarding depression and how it affects people. She went so far as to brag. “I’m ALWAYS HAPPY.”, she declared. Having written a character reference to a judge on her behalf, as she fought for sole custody of her youngest child, I beg to fucking differ, but I guess she’s not going to ever speak the truth because she refuses to see herself clearly. Denial is not just a river in Egypt. 😒
I don’t care what a friend comes to me with, they will NEVER hear me say, “I don’t know anything about it.” Let’s say I didn’t. On occasion it happens, but it takes less than ten minutes to educate yourself. That’s WHY we utilize search engines. Part of growth means constantly educating yourself. At least it does where I come from.
How is ANYONE over the age of twenty-five going through daily life without ANY knowledge about mental health? Please, elaborate. It’s 2019, and there are ZERO excuses for that level of ignorance. It’s inexcusable.
“Stop taking that poison.” Um, you admitted repeatedly that you guzzle down bottles of wine because you’re stressed, sad, not to mention, in compete denial of your true self, but medication is poison? Okay, wise one. 🙄 And by all means, FUCK OFF with your low level thought process. You’re not, “enlightened”; you’re fake and a complete fraud. I’m so glad to be rid of your drama, self-absorbed attitude, and your negativity.
Having me as a friend is something you should respect and appreciate because I don’t play games. You screw with me and my loyalty will become loyalty to myself, NOT to you.
Another now former friend was self-harming and as a result, extremely horrible things happened. I will not disclose the deeply private pain shared with me because I’m better than that. Yes, I’m angry as hell and would cheerfully share her name, address, and phone number, but again; I AM BETTER THAN THAT.
I proactively encouraged her to seek help. I was constantly consulted for advice regarding doctors, therapists, and medication. I could go back into my phone log app and count EVERY single phone call I took when I should have been sleeping, because apparently MY well-being was never more important than her incessant dialing.
I called various mental health clinics (from across the country) to see if they took her insurance. That, my dear readers, is a TRUE friend. I’ve gotta say, no one has EVER tried to help me like that, and truthfully, I’m smart enough not to allow myself to get to that point of no return.
Everything changed after all my guidance, though. I probably saved her life, but she thinks her part-time boyfriend is, and I quote, “Superman”. 🙄 You can think like that when you’re in single digits, but if you’re over twenty-five and have divulged an extremely abusive, manipulative, narcissistic relationship, one I witnessed in person, but you stay, then maybe, just maybe, you’re getting what you deserve because you aren’t smart enough to see things clearly, and you wrongly assume that a smart friend saying something about it automatically means that woman is jealous. Unless you live next door to a flagship Ulta, believe me when I say I’d NEVER be jealous of anything, and lately, even Ulta has lost its shine for me.
If you’re suffering, but have time to complain about how, “I gained fifteen pounds in a month.” because of depression medication, then maybe you need to sort out your priorities. I offered a list of medications where weight gain wasn’t a side effect. How did it turn out? I don’t fucking know. When a friend begs for your time and then blows you off, it’s perfectly acceptable to be silent until they apologize. It was her responsibility to make sure she didn’t permanently damage or destroy a long-term friendship. She didn’t make an effort whatsoever, though. That was her choice. Instead, she took the time one random Monday morning to “unfriend me” over a year later. Precisely who is the immature one here? I actually laughed. No one has to follow me on social media, and a real friend doesn’t announce it after years of calling you at all hours and pretending to love you like a sister. I decided this person was SO far gone that I wasn’t going to engage in the attention-seeking behavior they crave because she desperately needs this attention in order to feel “whole”. Except, the feeling is fleeting, and she will keep doing whatever it takes to get more. I should feel bad for her, but once I’m done, I’m DONE. I don’t give people the opportunity to come back, either. Friendship is a gift and a choice. If you throw it away, that’s on you.
When I started taking medication for depression, I gained over 250 pounds in two years. It wasn’t from food, it was a side effect of drugs forced upon me, because hospitalization was always a threat if you didn’t take the medication prescribed to you. I underwent a lot of blood tests to show where my medication levels were and they NEVER reached “therapeutic levels”, mostly because they weren’t the correct medications for what I truly suffer from. I’m under 5.4″ and I’m a former gymnast. Doctors didn’t care about the weight gain, they just kept pushing drugs at me. Some of these drugs will threaten everything you hold dear before you finally put a stop to it. But now, EVERYTHING is blamed on your weight. Sore throat? You should lose weight. Ear infection? Well, you need to lose weight. Migraines? Lose weight. Unexplainable chronic pain from head to toe? I was told I should get down to “sixty pounds” to be pain free. Yeah, I’d also be dead, but the doctor repeated it three times because I gave him the opportunity to self correct his words. He just kept repeating it, like he was the smartest person in the world. I should have punched him in the throat.
Over the past eleven years, I’ve gotten closer to my goal weight. I KNOW I can achieve the final goals and have lifelong results/benefits, but I’m sick of women being negative over five, ten, fifteen, or twenty-five pounds. I understand it being frustrating, but calling yourself, “fat” is ugly and unhealthy for the mind. When people constantly do it in front of me, I automatically wonder what they say about me behind my back. Unlike many people, I don’t judge my friends based on looks, age, skin color, country of origin, education level, or weight. I’m selective; not petty. I treat my friends the same way I’d want them to treat me, and rarely am I treated as I deserve.
When I hear your self-talk and criticism, I question what you say to and about me. I have about sixty pounds to go. It seems like a lot more on a smaller frame, but whenever I hear, “You REALLY have SUCH a beautiful face.”, it’s actually a backhanded comment about how I’d be so much prettier if I was a size zero. Zero isn’t a fucking size, not unless you’re a supermodel and play into that bullshit. Even newborns aren’t born a size zero! My NYC hair stylist disagrees with this, and once explained that my face shape (Which is oval.) is the perfect shape for a woman to have because it means every haircut will look good with her facial features. I don’t know that I agree with him, but he’s never tried to bullshit me. He’s also the only person I can trust to take me from my natural hair color to blonde in less than six hours.
However, my main point is that you aren’t going to physically be 13, 14, 15, or 16 years old for the rest of your life. Jeez, I thought I was “fat” then, and I wasn’t. At all. Our bodies change. Our hormones change. We all age differently. But I’m not okay with hideous negativity and societal pressures. And I’m REALLY not okay with “friends” who have, “first world problems”.
Your health is your wealth. Weight should NOT be what you’re focused on when you REALLY need the medication keeping you alive. It can be a goal when you’re feeling stable, not before.
I called my doctor late last month, wondering if he’d noticed that I’d cancelled on him. I legitimately do NOT cancel or miss appointments, even when I would much prefer to remove my eyeballs first. When he called me back, he said he trusts me to know when I need to come in and when I don’t. So, he clearly didn’t hear what I was saying, either. I won’t lie; I didn’t call him back because I was annoyed. I could easily slip back into not seeing someone for a year, or three. I told him that at my most recent appointment. Not only did he give me extra time, which he didn’t have to do, but he was in agreement with me about severing ties with a therapist who wasted a year of my life by being useless, and that’s me being civil. I’ve grown and I’ve changed, but she was not a part of any of that growth. I’m disgusted beyond words by her treatment of me.
I cancelled my final appointment with her because I knew I’d walk in, “hot”, and that means I knew my temper would flare into flames. I knew she could not accept the truth, so I decided that I don’t require closure in this particular matter. I decided that my sanity was more important than telling her what a useless sack of skin she is. I decided that insulting her and telling her how much her, “help” did NOT help, wasn’t worth me losing my temper. However, her one star rating on Healthgrades makes me feel better.
Will I go back to therapy? I don’t know. My doctor is going to do a deep search of all hospital employees and see who knows who. He knows if he screws up a third time, I’ll paint his office hot pink while he’s on vacation.
Have I reached out to anyone about what I’m going through? No. After recounting my father’s fifteen year battle with cancer to my best friend, who was unaware of all I’d gone through, I found myself in tears. I’m not generally an emotional person, meaning I don’t cry, unless it’s something serious, and even then, I might not. My reactions to things that bother and upset most people are not the reaction anyone is looking for, so I keep my mouth shut. And yet, I’ve written over three thousand words here, explaining myself when I don’t owe anyone an explanation.
Those of you who reach out with messages and comments, and thank me for writing things like this mean a LOT to me. If my words help you confront your pain, then that’s a positive takeaway.
Ultimately, mental health is a personal, painful journey. It’s a road often taken solo, for obvious reasons. Support may come easy for many of you, but for me? Well, I’m lucky to be a force to be reckoned with. It was my mother’s wish for me, and my strength is deeply engrained in who I am. Sometimes, I just need to remind myself who the fuck I am and where I come from. Hopefully, someone reading this will understand EVERY word.
Also, we don’t lose friends. We simply learn who our TRUE friends really are.
Copyright © 2019 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED. Written work by author may not be shared or posted anywhere without express written consent from the author. Excerpts and quotes from the material also require consent. This authors’ work and personal photos are protected under U.S. and International copyright laws. Further protection is under the Digital Millennium Copyright Act. ALL RIGHTS RESERVED.
“I didn’t expect to recover from my second operation but since I did, I consider that I’m living on borrowed time. Every day that dawns is a gift to me and I take it in that way. I accept it gratefully without looking beyond it. I completely forget my physical suffering and all the unpleasantness of my present condition and I think only of the joy of seeing the sun rise once more and of being able to work a little bit, even under difficult conditions.” ―Henri Matisse