Life is basically a pile of garbage, but I’m trying to get through it.

Hi.

It’s been a while. A looooong while. This blog is now a foreign entity to me, and re-reading some of the entries has shown me how out of practice I am with writing. (I’m not sure I can remedy that – at least not immediately – but I will try. Eventually.)

I’ve also noticed how much I have changed, not just mentally, but how I spend my time, and what thoughts occupy my mind. These days, I don’t have time to compose blog posts pondering pharmaceutical industry corruption and how illness changed me, or engage in idealistic fantasies of how I might fulfill my potential or contribute something worthwhile to the world. I used to think about that a lot, back when I didn’t realize what a luxury it was. Back when I had more time to myself, and in general, and I took both time and lack of personal tragedy for granted. Oh, well. Hindsight, and all.

I guess changes began when my son started high school. For many years, I woke at 7:00-ish in order to get him to school by 9:15, and get myself to work by 10:00. Since high schools here start at 7:25, I had to begin waking up at 5:30 in order to get everything done and get out the door, which might not be as bad if I didn’t still live in this apartment with poor insulation and upstairs neighbors who sometimes walk around right above my head until midnight or later, even on weeknights. Their footsteps are like hammers on my ceiling, which I can still hear through earplugs and the white noise of my air purifier. I don’t know why the fuck they can’t sit down and relax like normal people, but whatever. The point is, I’ve been a sleep deprived wreck for almost 3 years now, and I’m stuck here for various boring reasons which I won’t elaborate on.

The first year or two of this was somewhat okay. I would catch up on sleep on weekends, and school breaks. Summers provided relief as well. Oh, I should mention that I was still sharing custody of my son with his father, so I got more breaks back then. Life was hard, but manageable. But things started to deteriorate when my son’s father’s girlfriend left him and moved out of their house.

Now, this is where I think to myself, “Hmmm. Do I want to post such personal details of my life on the internet?” Although I’ve been open in the past about my internal struggles related to illness, I have never been as blunt as I’m about to be about certain things. But you know what?

1. This is my blog and I do what I want.
2. I am tired of pretending. That statement encompasses many aspects of life, which I may elaborate on in the future, but right now I am referring to one thing in particular.
3. Skirting around this issue mainly functions to protect one person, as well as to hide my own shame. For years I didn’t realize I was doing either one, but at this point I am done with both.
4. No one probably reads this fucking thing anyway, so who cares?

That said, here it is: I’m going to talk about the emotionally abusive relationship I had with my son’s father for 9 years, and how it has colored my life since then. My brief recap can’t possibly do justice to the complexity of this issue, especially if you’re new to abusive relationship dynamics, but a brief history provides clarity, so here goes. Side note: I will write more about this in the future – if not here, then somewhere else. Over the years I figured out that keeping my ex’s behavior secret started to feel like rewarding or condoning it, and I’m not going to do that anymore. If he didn’t want to be spoken ill of, he should have treated me better. Also, I think the Me, Too Movement has made this revelation easier. For all the flaws of our times, something about this era is making it easier to call out injustices and speak our truths. I am grateful for that.

So, here’s what happened in a nutshell. When I was 18 years old, I met someone who I thought was my soulmate, the love of my life, the person I’d spend forever with, yadda yadda yadda, insert more sappy, starry-eyed, cliche love crap here. For 6 months everything was perfect, and I couldn’t believe how compatible we were, and how lucky I was to have found him. Hindsight reveals several red flags, of course, but I was 18 – what the fuck did I know?

Anyway, we started having minor troubles over issues that could have been easily rectified with simple 10-minute discussions, but somehow our talks turned into marathon arguments that wore me down emotionally, and always involved him twisting things around so I was at fault, and me vowing to do better, or try harder, or whatever the fuck.

I should clarify that this happened slowly. We didn’t start off having marathon arguments. We started off talking in circles with me constantly trying to explain my viewpoint, wondering why I couldn’t get him to understand, and concluding that I must not be very good at communicating. Our arguments got progressively worse as time went on, and I eventually endured things that I am ashamed to admit I endured and may never speak of out loud, ever. But again, I thought we loved each other, and he convinced me that our problems were my fault. I didn’t know about abusive relationships, and how this one followed the exact pattern. I just thought I was fucked up, and that I was ruining the best thing that had ever happened to me.

My brief synopsis is turning out to be not so brief – SHOCKER – so I will fast forward a bit. For years we went through periods where everything was perfect for a while, then he would randomly explode over something he may have paid no mind to the week before. Typical abusive relationship cycles. I walked on eggshells for years, not even realizing I was doing it, to the point where my brain became wired to be on alert for danger, something I struggle with to this day.

4 years into our relationship, I became pregnant. I was 22 by then, things were going better for us overall, and – it really pains me to say this, and I am cringing so much right now, but – I thought having a baby would change him. What a fucking idiotic, misguided cliche. But I seriously thought the enormity of bringing another life into the world would make him a more empathetic person, who would make a better effort to have a good life with his family. Once again, I was 22, and I didn’t realize this relationship was abusive and there was no hope.

Within 2 years I began seeing a therapist because I was depressed and needed help coping with life. I still thought my relationship troubles were mostly my fault, even though a part of me knew I was being treated unfairly. My therapist was outstanding. She didn’t push an agenda, but slowly helped me understand that what was happening to me wasn’t right, or my fault. She always guided me to my next step after I came to certain realizations on my own. Here are two books she recommended which changed my life:

1. The Verbally Abusive Relationship: How to Recognize It and How to Respond by Patricia Evans
2. Why Does He Do That?: Inside the Minds of Angry and Controlling Men by Lundy Bancroft

The second book describes something like 8 types of abusive men. My ex was the Water Torturer and the Demand Man.

I’m sure there are many more related books on the subject now, possibly with greater insight and relevancy, but those were a godsend at the time.

Even after realizing my relationship was abusive, I still tried to get him to change by begging him to go to therapy with me, or at the very least reading some material on it. He refused therapy, as he didn’t trust mental health professionals. (Eyeroll) He read parts of Lundy Bancroft’s book, but not only would he not admit to his misdeeds, he tried to twist things around and call me the abusive one. I guess because I eventually lashed out at him after he would argue with me for hours upon hours, calling me names, mocking me, and verbally assaulting and trying to manipulate me, I was just as dysfunctional in his eyes. Whatever. I finally left him after a total of 9 years, relieved that my son wouldn’t have to grow up witnessing his parents argue in such a disgusting way. He was 3 at the time, and I legitimately thought I was sparing him a lifetime of bullshit by leaving his father.

Fast forward again. The ex met someone new and got her pregnant. (Eyeroll #2). I was still brainwashed into thinking he would never treat another person the way he treated me, for various reasons I don’t feel like elaborating on. At one point he even told me he didn’t want me to become friends with her, because he was afraid she would look down on him for the way he treated me. Oh yeah, I found out later that he told her we split up because he cheated on me. Well, he did cheat on me, but that’s not why I left. I left because it was an abusive relationship and I couldn’t endure another second of it. Guess what? She ended up leaving him for the exact same reason. None of this is surprising in hindsight.

You might wonder why I’m telling you this. Why would I reveal something so personal, which also makes me look bad, and may invite unwanted judgments and criticism? Well, because it’s relevant to how my life has gone the past 3 years. Remember when I said earlier that I still shared 50/50 custody of my son when I first started this blog? Well, I ended up getting full custody of my son because of an argument they had last year. I could easily pretend that it’s normal father-son arguing, and that teenagers are hard to deal with, and blah blah blah. Some of that is true. But some of it happened because this grown adult person can’t function in life without creating conflict for everyone around him. When his girlfriend left, he directed his verbal wrath on our son, partly because he had no one else to argue with, but also because he’s a fucking dysfunctional asshole who doesn’t know how to behave, or how to handle any form of conflict, or any type of challenge to his way of thinking. He will goad you into an argument, twist your words around to make everything your fault so he can berate you further, then act shocked and appalled when you finally snap after fucking hours of being on a merry-go-round of being manipulated, your words being twisted around and used against you. It’s a delightful pattern to be mired in for years of your life, let me tell you. In hindsight, I can’t believe I ever thought my ex reserved this behavior for his partners, and that children would be spared. How embarrassingly naive.

When his relationship with my son deteriorated, I tried again to get him to understand his behavior. We also tried to address things in therapy – he finally agreed to go because he wanted to repair their relationship, but things never got very far because of finances and his employment status. Meanwhile, my son continued to go over there because I couldn’t afford anything else, like paying for extra food for him, or paying for a lawyer to sue my ex for child support and full custody. Hell, I couldn’t even afford to take off work to go see a lawyer, because I’m still working the same crappy job I got when I first left him. Yes, it’s a problem, and no, I don’t know how to fix it.

Instead, I kept trying to fix their relationship. They didn’t argue every week – sometimes months passed between arguments. But when they did, I tried to give them both tips on how to get along better, things to read and try, etc. During this time, I realized I have some pretty deep PTSD over my relationship with my ex. Trying to help them get along was giving me flashbacks to trying to get along with my ex all those years ago. I became anxious and depressed, and reliving my past trauma practically immobilized me. I desperately wanted therapy, especially EMDR, but absolutely could not afford it. I ended up developing an ulcer from all of my worrying, and all of my fruitless efforts to solve these problems on my own. I inadvertently put myself squarely in the middle of conflict between my son and my ex – each of them texting and calling me whenever things went wrong – while simultaneously working myself to death at a job I hate. I worried about them fighting all the time – even during the months of calm – and hardly ever got to enjoy a moment without that underlying anxiety. On the rare chance I did, my son would usually text me about something ridiculous his dad said, sometimes asking me to come get him, or asking why he couldn’t stay with me full time, even though I had explained it multiple times. And honestly, yes, some of their conflict was normal, teenage angsty stuff, and not his dad being his awful self. But it was all stressful, and I wasn’t handling it very well. I was so accustomed to feeling anxiety, dread, and that feeling of “Oh, shit, I have PTSD and can’t afford to get help…when will this end?” that I didn’t realize how badly it was affecting me. Months passed, and I lost myself. I tried to break up with my boyfriend. I drank a little too much when my son wasn’t here. I withdrew from family and friends. It was a shitty, shitty time.

My son flies to another state to visit my dad and stepmom for a week or two every summer. When my dad offered to fly me up to visit for a few days, too, I decided not to go. I was having trouble with my ulcer symptoms, which strangely enough I can’t even recall now, and was scared to travel while feeling so sick. I wanted to see everyone, and drive over to the assisted living facility to see my mom while there, but just figured I’d wait until the fall. Also, I kind of wanted a few days to myself, after being stressed out for so long. I got those few days, and I’ll admit they were wonderful. I finally felt peace and a glorious absence of stress. When my son returned from his trip, though, all the same stress started up again, and my respite from my struggles were over.

I won’t elaborate much on this last part – it most definitely needs its own entry, and my recap of history is way long by now. I’m just trying to explain why life is a pile of garbage, as referenced in this entry’s title.

During these stressful months I kept thinking to myself, “I should call my mom,” but never did. I ignored a couple other nudges, like an abrupt panic about my parents dying someday, which I chalked up to an impending midlife crisis, and an article about someone famous going insane with grief after her mother died. I read the article during an episode of insomnia one night, and cried and cried, and yet I sill didn’t call my mom. Like I said earlier, I took time for granted.

One morning at work I missed a call from my mom’s friend, who was her medical power of attorney. I got nervous, but figured I’d call her back at lunchtime. Later, when I saw a missed call from my brother, my stomach twisted up in a knot. I went outside to sit in my car and call him back. I found out my mom, who had COPD, was taken to the hospital earlier that day, because she wasn’t very alert when an aide at her facility checked on her. I can’t remember every detail, but this was not my mom’s first hospital stay, and I think they were checking her for infections and trying to stabilize her breathing. They thought maybe antibiotics would help, along with some other medication which I can’t recall. She was put on a ventilator while this other treatment was happening. My brother was driving up to see her with his girlfriend, who hadn’t yet met my mom. I’m sure he thought she would stabilize and they would get to visit, and everything would go back to normal for a while.

I was scared and had trouble concentrating at work, but I tried to cross my fingers and hope for the best. A few hours later my brother called again. He said the doctors thought my mom had been sick with a viral infection and may have aspirated something into her lungs, interfering with her breathing and causing her oxygen levels to drop. He said the lack of oxygen damaged her organs, and that she wouldn’t be able to recover once they took her off the ventilator. Since my mom had a DNR, they weren’t supposed to keep her on the ventilator in order to keep her alive, but they left her on it temporarily so I would be able to fly up there and say goodbye.

I didn’t really get to say goodbye, though. I mean, I made it there and I saw her. She said a few things that didn’t make a whole lot of sense, (and a few things that did, which broke my heart all the more). At one point she sat straight up and opened her eyes and looked right at me. I smiled and said, “Hi!” but she immediately fell back into bed. Nothing happened the way I expected it to, and I have regrets about that time which I won’t go into right now. I spent several hours with her, agitated by the ventilator and out of sorts, and probably not even knowing I was there, but she did sleep peacefully for 3 hours once they took the ventilator off. We lost her early the next morning.

At the moment I am unable to describe how painful and shattering my mother’s death was. Anyone who has lost a loved one knows what I mean. If you don’t know, consider yourself lucky. For 39 years I didn’t know. I had empathy for people suffering loss, but I had never truly understood how such a loss destroys you. As I said before, an entry for another time, perhaps.

Before I left home, I had alerted my son’s father to the possibility of having to leave, and he assured me he would take care of our son. I also called my son and let him know what was happening, and asked him to please, please try to get along with his father, and to just go to his room if necessary, rather than engage in any arguing. I had asked his father the same thing. They both knew my mom was dying. At the time, I had no idea how long she would live, or how long I would be gone, but I needed things at home to be okay so I could deal with the worst pain I’ve ever felt in my life.

I spent the next few days alternately numb and distraught with grief, packing my mom’s apartment and deciding what to keep, sorting through pictures to split with my brother, and planning a small memorial service. Time moved in slow motion. Some moments left me crying inconsolably, and others left me frozen, unable to move for hours, as though I was weighted down by a thousand blankets. Every minute thing I did required a disproportionately extreme effort. I kept forgetting the simplest of things, like whether I had just said something out loud, or what the plans were for the following day, even though they were just discussed. I thought my mind might never return.

While I was dealing with this, and a mere 2 days before I was scheduled to return home, I got a series of texts from my son detailing the worst argument he had ever had with his father, and how he would be staying at our apartment by himself the night before I’d be back. (He was 16 at the time, and plenty old enough to be alone for one night.) I was supposed to return home and have that night to myself to mourn my mother’s death before returning to work the very next day, but instead my son was there. And he’s been here ever since. He’s not going back to his father’s house, probably ever, and at this point any hope of reconciliation can’t or won’t happen until adulthood – if even then.

In retrospect, this needed to happen. My son is doing well and has discussed these issues with a therapist, who believes him to be a very emotionally mature and sensible teenager. But did it have to happen at the worst possible moment for me? I guess so, or it wouldn’t have fucking happened that way. Regardless, here I am now, navigating full time 100% every aspect of parenting BY MYSELF while getting almost no child support, working full time at a dead-end job that feels like running as fast as you can on treadmill, and grieving the person who loved me more than anyone else in the world, while trying to make sense of the clusterfuck that has been my life.

Like I said, life is a pile of garbage, but I’m trying to get through it.

Untitled-2

I considered wrapping up this entry, but realized I have a few more things to say. Like, why did I spend so much time talking about my ex, and the abusive relationship? All I had to say was, my schedule changed, I’m sleep-deprived, I have full custody of my son, my mother died, and I’ve been too busy to write. Simple. Then I could attempt to write an entry about something else.

But things aren’t that simple. I am angry. I can no longer sit back and pretend that I’m not, or try to make lemonade out of life’s goddamn shit lemons. I am angrier than I’ve ever been in my life.

I am angry noticing all the ways my life has been colored by abuse. Angry that I can leave this awful person and think the problem is solved, but still be haunted by him over a decade later. Pissed that I’ve been affected by him for 22 years of my life, and probably will always carry the scars in the form of PTSD.

I feel absolute, soul-churning, seething rage that I spent the last 6-8 months of my mom’s life so overwhelmed with stress about my ex’s behavior that I called her way less often than I should have.  I should have called her more, regardless of whether or not I was having a hard time. I am angry that this stupid bullshit caused me to miss the last moments of her life, and I let it.

I am furious – fucking FURIOUS – that he couldn’t stay peaceful for a mere week WHILE MY MOTHER WAS DYING. I can kind of, sort of, forgive his treatment of me while we were together all those years ago, if nothing else to keep from poisoning myself with grudges and negative emotions. But I don’t think I can ever forgive him for this one.

I am angry that I didn’t just let my son come live with me from the start of these problems, especially since that’s what ended up happening. I could have saved everyone a ton of aggravation. But I was scared of my ex taking me to court and trying to fuck with my life even more, so I didn’t.

I am angry that after years of being removed from the toxicity of our relationship, I forgot the cardinal truth of abusive relationships: ABUSERS DON’T CHANGE. I never should have even attempted to fix these types of problems again, because as I learned the first time, nothing ever works, and all I did was re-traumatize myself.

I am angry and feel guilty that I somehow overlooked the fact that having end stage COPD meant that my mom could die at any moment. How the fuck did that even happen? I guess I was so used to her state of health over the last two years – being unable to talk on the phone one day, but seeming better and more vibrant the next – that I took the gravity of her disease for granted.

Oh and also? Someone at some point told her she had 6 months to live, but no one told me. She didn’t tell me, and neither did my brother or her friend. To clarify, telling me was not their responsibility, and had I called more often, she may have remembered to tell me herself. She wasn’t exactly thinking clearly during every conversation we had, probably because of lack of oxygen, so I’m not mad at her or anyone else. (Well, except myself.) It’s just one of those WTF moments.

So, I have a lot of processing to do. All of this anger, yes. But also, I’ve realized that I have unresolved grief over my mom moving to another state when I was 15, and not being nearby in my adult life. It wasn’t her fault – she left to take care of her sick mother and moving to live with my dad was my choice. Also, neither of us could afford to move, or even visit each other very often after that, but it still sucks. I’m now mourning her death as well as losing her at 15.

I’ve had other realizations as well. Losing my mom created a distinct before and after in my life, just like illness did, but so much worse. I realized that what I thought was the worst thing to happen to me – floxing – was not, in fact the worst thing, in spite of horrific, acute suffering that lasted years. I realized I would flox myself a thousand times over and live my life in permanent misery if I could just have my mom back.

I’m not quite sure how, but her death is changing me. It will be an ongoing process of realizations and transformation, some of which I may explore in this blog.

I do know that death creates a finality which allows you to view your life and your relationships more objectively, especially since there is no room for change. Your relationship with the person who died is solidified in time. There are no thoughts of the future, so you can hone in and examine the past more easily. At least, I can. That’s one reason why I was able to see how my abusive relationship affected me throughout the years, and impacted my relationship with my mother (as well as everyone else). Even before floxing, I would sometimes avoid calling her because I was ashamed of my struggles. I didn’t want her to know how bad my relationship was, even after I realized it wasn’t my fault. Because even then, I still had shame over allowing it to continue, or not realizing how bad it was from the beginning. I wish I could go back in time, and not allow shame to dictate as much of my life as it has.

I think I’m ready to stop hiding behind my shame, or tiptoeing around sensitive issues in order to protect the guilty. Grief has at least partly washed away my filter, and my fear of being vulnerable – somewhat, anyway, otherwise I wouldn’t have been able to write this. And it’s fueled a rage inside of me that’s pushing me to speak my truth and reclaim my power. So, in the moments when I’ve gotten enough sleep to articulate my thoughts, and I’m not numb or paralyzed by grief, I intend to do just that. Maybe writing about shame, abuse, or other subjects besides just illness will help me process them. It worked with floxing, after all. We’ll see what happens.

***

It’s now been months since I wrote the above words. I’m glad I did, as I can tell how they helped me process my situation, but unfortunately I’m now so removed from the flow of the subject that I can’t finish this entry the way I originally intended. I had wanted to mention that I still tiptoed around my ex after leaving, through having to communicate with him weekly about our son for years, though I didn’t realize I was doing it. And that having almost no contact for several months freed me mentally. It enabled me to detox in a way, and recognize my mistakes. I also understand the psychology of abuse in ways I couldn’t when I was still actively engaged with him.

I wanted people who read this to try to understand that, because I feared judgment regarding the way I handled things all these years. I think I’m past that fear now. I figure that, first of all, not many people even read this blog. Secondly, uneducated opinions about abusive relationships and PTSD are irrelevant.

Most importantly, though, I just don’t think I care enough to worry about people judging me anymore. That kind of extraneous shit doesn’t matter in the end. Life is hard enough on its own. People you love die. One day you and I will die. Before that happens I’m going to live my life as best I can, learn from past mistakes by calling and spending more time with the people I care about, and continue to tell the stories that define my life.

Welp, that’s been sportsball.***

Squidward Football

Tonight was Super Bowl 50, a topic I never in a million years dreamed I’d blog about, given that I haven’t been into sports since I made a community center basketball team in 2nd grade. (We were called the Opossums and I was the only girl on the team. I cried when I found out – about being the only girl, not about our unfortunate yet hilarious-in-hindsight name.) As I grew into the alienated and oft-rejected teenager I became, I not only lost interest in sports, but viewed it with active disdain. I would internally scoff at the widespread obsession, wondering why people couldn’t focus their energy into more meaningful pursuits. It was my version of teenage snobbery, most likely born from the years of teasing I endured throughout my childhood from the spoiled jocks and cheerleaders I went to school with. I wanted no part of any aspect of their existence, sports included.

Fast forward to 2 years ago when all of a sudden, through no encouragement from his parents, my son joined our nation’s obsession with sports by taking an interest in our local team, the Panthers. He also tried out for and made his 8th grade football team. And just like that my son drew me into a world I had tried to ignore my entire life. But back to Super Bowl night…

I began the evening reflecting on parenthood, and how my avoidant tendencies are no longer possible when caring for a child who seems to enjoy normal life much more than I ever did; I now know more than I ever thought I would about many aspects of pop music and culture, sports included. Basically, every mainstream thing I tried to run from as a teenager I’m now being exposed to through my child. One surprising result of this is feeling myself actually care about a sports team. I never thought that would be me. Nor did I ever picture myself braving the Buffalo Wild Wings crowd for takeout on Super Bowl night –  especially during a Super Bowl my local team had made it to after a nearly undefeated season. Yet, that’s exactly what I did, because my son wanted the whole Super Bowl experience, his favorite chicken wings included. And as I sat in the packed restaurant waiting for my order, the energy and excitement surrounding me was infectious. Even though it would make my punk rock 16-year-old self die a little inside (LOL…oh, the angst!), I must admit I swelled with small burst of pride hearing fans cheer for the players when they graced the multitude of TV screens surrounding me. Not only does the adult version of me no longer scoff at popular pastimes, I was actually starting to understand their appeal.

In fact, I was looking forward to sitting down with my teenage son as he watched his favorite team compete in the 50th Super Bowl, gorging ourselves on chicken wings while he fruitlessly tried to explain various football plays to me. Again. Because no matter how many times he has tried, I simply cannot understand or retain football information. The rules are boring and confusing, and watching players run and scatter all over the field before piling on each other is incomprehensible to me. It’s visual gibberish. Things happen too quickly, and I never have any idea what is going on. But I like that my son gets excited and tries to share it with me; some teenage boys barely speak to their mothers.

Anyway, as I tried to watch the game while listening to my son complain as our team faltered, I realized my former lack of concern over sports was probably for the best because it stresses me the hell out. Watching your team lose pretty much from the start just sucks. So does feeling the negative vibe of stress and disappointment from people around me. And because I’m me, and I can’t just relax and enjoy something without worry, I thought about the repeated head injuries these players will suffer throughout their careers, and how that might affect their futures in a devastating way. It hurts my heart and makes me feel sick inside. Call it anxiety if you will, but I cannot ignore the dark underbelly of our modern world after my Cipro ordeal. Reality strikes again.

So, instead of trying to learn about and enjoy the game while bonding with my son, tonight I was suddenly, once again, acutely aware of my empathetic nature. I’ve always been a person who feels other people’s energy and absorbs their emotions. My teenage self turned her nose up at so-called meaningless distractions like football, but underneath my snobbery was perhaps a subconscious self-preservation mechanism at work, protecting me from the stress of caring too much. Kind of pathetic, as it’s just a game, but my jacked up nervous system just doesn’t see it that way.

Eventually, I realized I wasn’t having any fun at all sitting there stressed out, watching the Panthers lose, and feeling the tension emanate from my upset child, so I got up to finish my laundry. I also made a mental note to resume daily meditations, because even I realized my overreaction to this type of stress was ridiculous. (Beyond ridiculous, actually; it’s 11:30 now and I’m lying in bed wondering if my heart will ever stop pounding long enough for me to sleep. Update: I wound up getting a whopping 2 hours that night.)

Okay, so, football? Not for me. Just like most sports (probably), action and horror movies, the evening news, and large crowds. Empath status: confirmed.

But that wasn’t my only epiphany. When the Panthers finally lost and my son was so disappointed he couldn’t utter a word, I realized how this sense of deflation contrasted with the excitement and pride we could have felt had they won. And now that the game was over, as well as all the planning and anticipation of a fun evening, tomorrow would just be business as usual. Dejected, I thought of a song snippet from a SpongeBob SquarePants movie that went something like, “Back to my depressing life of quiet desperation.” Now, I’m pretty sure the original quote came from someone more sophisticated than Squidward***, but I’m not intelligent enough to remember who. However it weaseled into my consciousness, the epiphany stands: I understood for the first time the appeal of immersing oneself in so-called meaningless distractions such as football – it can provide excitement and escape from an otherwise depressing existence, IF you’re not a delicate flower like me, that is. Because when I thought about returning to my current life struggles, minus the temporary burst of pride from my team’s Super Bowl win, I felt a distinct sense of dread. Then I found myself wishing I could handle the distraction that is football, so that I could inject these little bursts of excitement into my otherwise dreary life.

All in all, this was an eye-opening evening for me. I suppose I wouldn’t trade it, though I may feel differently when the sleep-deprived nausea and stupor settle in tomorrow. Either way, I should probably figure out how to improve the conditions of my life, or find a more healthy distraction that doesn’t leave me with insomnia and nighttime heart palpitations, because sports isn’t it. I gave it a try, but just couldn’t do it. Maybe I’ll try again someday, if our team ever makes it to the Super Bowl again. I’ll have to work on that empath/delicate flower thing in the meantime, though. Don’t hold your breath.

P.S. This long post could be summarized as follows: Awkward, discontented, empathic mom tries to enjoy football, fails due to nervous system dysfunction, ends night an insomniac wreck, vows to mediate more.

In other words, my life is kind of stupid.

 

*** This post’s title is a little throwback to my favorite podcast of all time, the now-defunct Professor Blastoff. You should check it out. Spoiler alert: if you grow to love it as much as I did, prepare for full on mourning once you run out of episodes.  It’s been half a year, and I still miss Tig, Kyle, and David like long-lost, virtual friends.

*** I no longer know how to properly incorporate footnotes into my writing, obviously. Maybe if Bernie Sanders is elected, I can go back to college. My boss was recently discussing the possibility of this foreign-sounding, utopian world involving free college educations, but dismissed it with, “Well, that wouldn’t apply to us, though.” First, like hell it wouldn’t. Second, that’s easy for you to say as an almost-retired former engineer; you’re not the one wasting your life lamenting your lost potential. Me, I’m going back to college. So, there.

*** Google told me the quote “Most men lead lives of quiet desperation” comes from Henry David Thoreau’s “Walden”, a tidbit I may or may not have known before my chemical lobotomy. It sounds familiar. Oh, well. At this point in my depressing life, in the throes of my own quiet desperation, I appreciate the quote far more coming from a curmudgeonly cartoon squid I saw in my early years of motherhood than a well-respected author and philosopher I admired in my teenage years. If I can no longer draw inspiration from Henry David Thoreau, I might as well get it from Squidward.

Genetic Apologizers & Various Topics of Doom

Apologizing to younger generations for the faulty genes they’ve inherited has been a longstanding tradition in my family. To my dismay and eventual resigned indifference, I followed in the footsteps of at least 3 generations – my mother, my grandmother, and my great grandmother – by apologizing to my own child for unwittingly dooming him. Because our genes suck, you see. They just do. And I chose to procreate before I knew any better.

Now that 23andme exists, I have scientific proof that all these wacky women in my maternal line, myself included, were right to worry. We do have some fucked up genes. No wonder our family’s been plagued with cancers and rare blood diseases and asthma and allergies and eczema and the like. No wonder I became chemically sensitive. No wonder I don’t process drugs well. I’m practically a genetic mutant.

Adding to the problem, it’s not like our world is becoming less toxic. On the contrary, our food supply and our air quality have declined significantly over the years. Bad news for genetically compromised people such as myself.

I also recently learned that children inherit their mitochondrial DNA from their mothers, which is important for health. (Yes, I’m 37 and just learned this. What do you want from me? I’m not a goddamn biologist.) Well, since my mitochondrial DNA sucks, my son’s probably does, too. For christ’s sake, my mother was right…again. “I just had no business having kids,” she’s said on more than one occasion. I’ve always reassured her that I’d rather be alive with problems than stuck somewhere in the ether, all formless and shit. Well, I didn’t say it quite like that. But I conveyed my desire to live, potential genetic fuckery and all.

After Cipro, and MCS, and ailment after ailment, I’m not so sure. I mean, I’m stuck here. I’m not going anywhere, because fuck it – I’m already here and I can’t leave my kid. But I don’t necessarily WANT to be here anymore, especially facing potential decades of fruitlessly chasing good health. I’m already so tired, and this is no way to live.

When I’ve apologized to my son in the past, he’s reassured me in the same way I reassured my own mom, even though he’s experienced more sickness at a younger age than any of us have. (I, at least, had a somewhat healthy childhood. As far as I know, my mom and grandma did, too.) “I’d rather have these problems than not be alive,” he’s said. But I know he doesn’t understand the full scope of what might await him.

Eventually I decided to stop apologizing to my son for fucking him up. One, it’s kind of dysfunctional to voice those regrets aloud. No need to repeat the patterns of my elders if I can help it. Two, I don’t have to say every thought that enters my mind. Just shut the hell up sometimes. Three, I don’t want him to grow up thinking his genes are a time bomb waiting to ruin his life. I don’t want to instill this underlying fear into his subconscious mind.

That said, I also don’t want him to take Fluoroquinolones or consistently expose himself to chemicals, because like it or not, he IS genetically susceptible to developing MCS and reacting to Fluoroquinolones. And no one looking at these health conditions from the outside can remotely fathom the hell they bring, or the havoc they wreak. There has to be a way to impart a healthy sense of awareness and caution without poisoning him with fear.

Then again, it’s probably too late. Much like procreating before I realized my genes were bad, I also apologized for his genes before I realized his subconscious mind was a sponge soaking up my well-intentioned but dysfunctional worry. So now I’m not just sorry for his genes, I’m sorry for apologizing for them during his formative years. (Geez, how else am I unwittingly fucking up my child?)

I no longer apologize for my son’s genes, but that doesn’t mean I worry any less about his future health. Staying true to my family traditions, my brain has been flooded with advice I would give him if the advice weren’t totally fucked up and alarmist. Like, maybe he should use 23andme into to find a wife eventually. You know, pick someone with good genes in case he gets sick later in life. She can produce healthy kids who can help take care of him. Side note: will something like that be the future of dating? Not just checking people for STDs, but checking for genetic mutations? God, what a terrible idea. Told you my brain is out of control.

Also, I think he should go to college and major in something that will immediately land him a high paying job. Then he should live in a one bedroom apartment and save all his money for years in case he gets sick. And he should also try to marry someone who is financially stable. No, money can’t necessary heal an illness, but it can at least eliminate a portion of a person’s stress. It’s really awful to be sick and financially strained at the same time.

Don’t fret, I’m not going to actually suggest these things to my child. I know our biochemistry is impossibly complex, and that shitty genes do not necessarily doom a person to terrible diseases and a lifetime of illness. The point I’m skirting around in this ridiculous post is that I’m sick of being sick and worrying about being sick, and worrying about my son’s future in this shitty, poisoned world.

That’s all. No big deal.

Also, tomorrow I’m going to an ENT because my left ear is stuffy, and full, and ringing, and has been for a month. I can’t hear well, I feel disoriented, my glands hurt but I have no infection, and I don’t know if any of this is an ear problem or a TMJ problem or something even more sinister. All of this is really bumming me out today. At one point my thoughts turned to 23andme, and how I’m too tired to figure out how to deal with my mutations, and how a part of me just doesn’t even fucking care enough to try to fix anything anymore. I also do not want to get on this doctor merry go round again, but I have to figure out WTF is going on here. Did I mention my fingers and the side of my head feel numb sometimes? And that some kind of weird cognitive difficulty is going on? Well, it is.

Also, I’m just as afraid of the doctor telling me nothing is wrong as I am of hearing bad news. Because clearly something IS wrong – I’m just so used to being dismissed that in spite of these obvious problems I’m afraid of some guy in a white coat telling me it’s all in my head. Hey, asshole? It is in my head – my left ear, specifically. Fucking diagnose me.

And now my PTSD is kicking in. I swear, just when I think life is relatively normal, some shit like this happens. Fuck off, life. Seriously.

Whelp, this post sure devolved into a pile of shit, didn’t it?

Oh, well. Better luck next time. Tomorrow is a new day, and all that crap. Insert additional inspirational cliche here – I’m all out.

UPDATE, because I’m too tired to write a new post:

The ENT thinks my problems are TMJ-related, and that my ear fullness and hearing loss are due to residue left by the ear drops I used a few weeks ago. Gross. I guess it’s time to resume the dental work I’ve been putting off. I took a break because I can barely afford the payments. Treating TMJ is also expensive, so fuck that, too. 

My story was published…and people read it!

Even though I only have 20-something followers, I’m going to post a link to my Fluoroquinolone Toxicity story…I think. It reveals my real name, something I’ve been reluctant to attach to this blog. The anonymity of writing here is freeing. However, I have found that writing my story for hundreds, or even thousands of people to see WITH my real name attached has also been freeing. I’m no longer hiding my negative health experiences for fear of being judged as mentally ill, nor am I succumbing to the shame surrounding getting sick. Those days are over.

I honestly never thought I’d allow my experiences to challenge commonly-held beliefs about the illnesses I’ve endured. I’ve wanted to shrink away, even to pretend none of it happened once my health began to improve. I tried to ignore it, but it never lasted long. I saw people posting about FQs on Facebook all the time. Group posts showed up in my feed even if I went weeks without visiting the groups. I worried about people in my life being prescribed Fluoroquinolones, or being exposed to chemicals which can induce MCS. I saw clues that people I knew were reacting to their environments when they developed food sensitivities, or suffered migraines after dying their hair. I saw news stories about things like Post-Ebola Syndrome, and knew that medical professionals were likely ignoring the true, underlying cause of this “Syndrome”. I saw remnants of my suffering everywhere I turned, but felt so much post-traumatic stress from anything FQ or MCS-related that I’d get paralyzed and haunted by terrible memories. No wonder I wanted to run from the past.

Living with the knowledge my illnesses taught me really is like living in the Twilight Zone. I’m no longer in the matrix, and can never go back. I feel like I know all kinds of terrible secrets now – secrets about how the world operates behind the scenes – and I can never un-know them as long as I live. Nor can I pretend they don’t exist. Nor would I want to.

Eventually, I began to realize that I can’t sweep my experiences under the rug. Why on earth should I treat myself the way doctors, pharmaceutical executives, and industry lobbyists have treated me? I shouldn’t. Besides, if people like me are too afraid to tell their stories, nothing will ever change.

And just to clarify, I’m not implying that others should feel obligated to share or speak out if they are not comfortable. I think healing is a long and complex process, both physically and mentally. If you’re not ready or able to tell your story, you should honor that feeling within yourself as long as it’s there, even if it’s forever. Some people move on and live normal lives, treating their FQ Toxicity or MCS as a bad dream they’ve woken up from and want nothing more to do with. And that’s okay. Not that they need my permission, obviously – but the point is that people should honor their own healing in whatever form it takes. Speaking out is not for everyone, and I’m no better than anyone else for being compelled to do so. After all, it took almost 7 years for me to tell my story. And frankly, I’m still a little surprised that I told it.

Everything I write about is my experience, through my own perspective, which may vastly differ from yours. For me, I couldn’t move on. I couldn’t pretend my health ordeal never happened. I felt a strong urge to write my story, to not only help others, but to process my own experience. In the end, I found it incredibly healing. I feel like a weight has been lifted now. I feel more free than I ever have. And I feel a sense of accomplishment, knowing my words have the potential to help someone suffering feel less alone, or prevent someone from knowing the horrors of FQ Toxicity and MCS. Or maybe, just maybe, something I said could open the mind of skeptic, or challenge someone to offer more compassion to someone in circumstances they don’t understand. Maybe, or maybe not. I can hope, anyway.

“We don’t have to engage in grand, heroic actions to
participate in the process of change.
Small acts, when multiplied by millions of people,
can transform the world.”
~ Howard Zinn

And now that I’ve told my story the way I needed to tell it, I can move onto other projects. It’s opened doors, proving that I don’t need to fear showing myself, or being true to myself. I’ve struggled with that my entire life. I just hope I have enough time in this wonderful, crazy, and still really, really hard life to do some other things. I have art projects I want to do, writing projects, and even ideas for merchandise. Some of my projects are health-related, and some aren’t. I hope I can tackle most, if not all of them now.

“Tell me, what is it you plan to do
with your one wild and precious life?”
― Mary Oliver

You know what’s funny, though? I think I couldn’t tackle other projects until I had written my story. I think that, subconsciously, I knew it was the most important thing. I feel it in the way I look back and notice my former, underlying anxiety which was saying “There’s something I should be doing, but I’m not doing it.” I didn’t know what it was, except for the general knowledge that I’m not fulfilling my passions in my job or in my daily life. Many of us aren’t – many of us have to work and survive, often in professions that aren’t aligned with our dreams.

But this feeling went beyond that. This feeling was telling me to write my story. I know this now, because of the way I can breathe more freely now that’s it’s done and out there for everyone to see. I know by the way my world feels more expansive, more open to different possibilities – like a shell has cracked open for a seed to grow. Telling my story was the cracking of the shell which encased me as long as I’ve been alive.

I have to point out, too, that something I thought mattered to me in telling my story didn’t ultimately matter much at all. See, I posted it on my personal Facebook page, after 6 years of reluctance to discuss my health issues with people who didn’t already get it. Doing so was a huge step out of my comfort zone. I expected more of my friends and family – people in my immediate life who I don’t know from an online forum – to read it and comment, or at least press “like”. After all, health issues aside, I did something cool. I wrote something which someone published, for the first time in my life. Like an actual adult. (LOL) I was proud of myself, and expected more people to be proud of me, too.

That didn’t happen, though. In all fairness, the article was long. Maybe they didn’t have time to read it. Maybe they missed it. After all, not everyone has time to haunt Facebook all day. But I was a little disheartened to see that something I poured my soul into got fewer likes than some of my goofy posts about cats or dreams about Dan Aykroyd and the afterlife. I was a little bummed out…but not for long.

I realized I didn’t much care what my friends and family thought when I started getting compliment after compliment from floxie after floxie. Compliments, thanks, personal messages, and more. I even made a few new friends. What really got me, though, was the number of people who thanked me up and down for articulating my story in a way they couldn’t – because through telling my story, I told theirs as well. People expressed their gratitude, and some even said my story made them cry. Comments like those made ME cry.

I hope my real-life friends and family will heed my warnings about Fluoroquinolones, yes. But more than anything, I’m humbled and grateful that my story touched the people who understand what I went through – the people I shared this insane, horrendous, Twilight Zone experience with. The people I unknowingly wrote this story for. Because I’ve realized that perhaps the most rewarding aspect of telling my story wasn’t the potential to educate others or prevent harm; it was being a voice for people who are suffering so horrifically, feeling alone in the world. Knowing my story provided a small measure of comfort to people – the people whose ordeal I know intimately – means more to me than anything.

So, here it is.

P.S. I don’t mind embedding a link that reveals my identity in my blog, but if I do a google search for my name and this post somehow appears, I’m going to remove the link. Why? Because I’ve complained A LOT about how unhappy I am at my job. I don’t think general complaints are grounds for termination; like I mentioned earlier, many people work at jobs they consider unfulfilling – and mine has the added bonus of being grueling at times, as well. I haven’t complained about specific people or verbally trashed my workplace, just expressed my personal unhappiness, but still. I don’t want anyone associated with my workplace to read any of this, or know how unhappy I am. In spite of my lack of job satisfaction, and the fact that I rarely use my degree and feel overworked and underpaid, I am grateful to have a job that allows me to somewhat pay my bills and have health insurance. I don’t want it to end over some silly blog posts, especially when 90% of the people I know share a similar dislike of their jobs. I’m not exactly an anomaly, here. Anyway, there’s my disclaimer in case the link to my story disappears.

I did a thing today

I did a thing today…and a good thing, at that. Something I’ve never done before. I submitted my first writing piece somewhere for online publication. I told my Cipro story as a kind of public service announcement about Fluoroquinolone Toxicity and MCS, and I told it in excruciatingly personal detail. Let me take a moment to celebrate why this was so huge for me.

1. I struggled and spent MONTHS honing this piece. (Well, months of Saturday mornings, anyway.) My blog posts have been okay for someone out of practice with writing, but those were just blog posts. This piece was approximately 4700 words long. To finish something so large at my age, after all I’ve been through and all the education I’ve forgotten over the years feels monumental.

2. I stepped WAY out of my comfort zone with this piece. I basically said “Fuck everything – this is my story and I’m telling it.” I processed underlying trauma, too, through telling it exactly the way I needed to. And I did it well. I’m not saying I wrote it in the best way possible – I’m sure I didn’t, although I tried. But I told it my way, exposed my truth in spite of my fears, and found some profound healing along the way. THAT’S what I did well.

If it’s published, people are likely going to criticize this piece. Mean online commenters might come out of the woodwork to insult me for daring to declare that I have two unacknowledged illnesses caused by chemical and pharmaceutical injuries and underlying industry corruption.

You know what? Fuck ’em. This is my story, my truth, exactly as I experienced it, and nothing any naysayer can possibly say or do will ever change that.

Of course, I also supported my claims with relevant links, so anyone too invested in today’s medical dogma that they can’t be bothered to open their minds to a different truth, well…that’s their right, I suppose. I did my part educating. I can’t make someone change their mind, and have no interest trying anymore. I relayed my experience, and warned others of potential life devastation. If I save one person, it will be worth any disbelief or ridicule.

Anyway, back to celebrating:

3. I took a huge step pursuing one of my lifelong dreams. How will I ever succeed as a writer – or as a designer, or an artist, or anything else, for that matter – if I’m too afraid to put myself out there and risk looking the fool?

Mr. T

I made this meme myself. I know, big accomplishment, right?

 

Answer: I won’t. It will never happen. It still may never happen, but you know what? That’s okay, because on my deathbed I’ll be able to say I tried. Writing is one of my callings. I will continue writing until the day I die, whether or not I’m good at it, whether or not people read my words, and whether or not my life ever looks outwardly successful by society’s standards. Guess what? The act of doing, of trying, of persevering, of spending hours, days, weeks, months, years in joyful pursuit of your passions IS a version of success unto itself, AND its own reward. It may not come with money or riches or a safety net of any kind – or it may, who knows – but it will come with a sense that I’ve fulfilled my purpose in life. THAT is priceless. (But hey, universe, I’ll take money, too. I’m open to all forms of abundance, just to make that perfectly clear.)

This image belongs to Louise Hay, from louisehay.com. I'm unclear if I can legally borrow this image to place on a blog which makes no money whatsoever. If I can't, I will gladly remove it upon request.

This Louise Hay affirmation image belongs to Louise Hay, from louisehay.com. I’m unclear if I can legally borrow this image to place on a blog which makes no money whatsoever. If I can’t, I will gladly remove it upon request.

 

(Why, yes, I did just feature metaphysical guru, Louise Hay, and Mr. T in the same blog post. Why do you ask?)

I’m so proud of myself. Three years ago, the mere idea of writing this piece, then submitting it to potentially be read by hundreds if not thousands of people was unthinkable. I wanted to, though…I SO wanted to. But I was too scared, and too preoccupied with the fear of people reading my words and judging me as crazy, or unintelligent, that I subconsciously blocked my own progress every time I sat down to write – by either procrastinating after barely starting, or by being so obsessed with choosing the right words and the correct grammar that I never got far. But ultimately, I kicked fear’s ass. You hear that, fear? I won. (For today, anyway.)

Oh, and I also thought that writing my story would entail defending my experiences, or having to prove them somehow. Nope. It didn’t. I mean, I provided links, but I didn’t plead my case like I thought I’d have to. All I had to do was tell my story. I can’t control the outcome – or what people choose to believe about me after I bare my soul.

Not trying to control outcomes in my writing has set me free. I figured out that by attempting to control the outcome of this piece, I was trying to please everybody, which is kind of my default setting. Guess what? Not everybody can or will be pleased. Trying to do so dampens my self-expression, and makes me shrink in fear, holding myself back and wasting valuable energy.

I’m also ready to stop trying to please everyone in other areas of my life, besides writing. Because guess what else? Not everyone has to like me as not only a writer, but as an artist, or even as a person. They don’t have to like my personality, my sense of humor, my appearance, or my choices. But that’s okay. My role in life is to be myself and do the best I can, not alter myself to fit everyone’s contradictory ideas about who they’d like me to be. (The same is true for you, too, reader. I don’t care who you are – it’s true for all of us.) The process of writing this piece helped teach me this. I mean, I KNEW it on an intellectual level, but I didn’t know how stealthy and all-encompassing this pattern was – that it showed up in small, hidden ways, like during the simple act of writing. No wonder I’ve never been able to finish anything until now! And no wonder I used to struggle with depression – all that goddamn people-pleasing depleted my energy!

Also, no wonder I’ve spent most of my dating life involved in terrible love relationships. I subconsciously sought out people for whom I’d have to change myself in order to please, because I was afraid show my true self for fear of rejection. Then they treated me like a doormat, or worse. Hello, life epiphany #4726264. Or, hello again. There’s a good chance I actually realized this years ago and subsequently forgot. There might even be a reference to this epiphany somewhere on this blog. Ha!

Anyway, things are a-changing, folks. Even if the person I submitted this piece to doesn’t publish it, the ball is in motion. I will keep writing (about whatever!), and keep trying, no matter how many rejections I get.

Also, I will keep striving to be true to myself while doing what I love. There’s no turning back now! After all, according to Louise Hay, that’s how you attract abundance in your life.

Mr. T would probably agree.

Baby Steps, Secret Goals, Grammar, and the Miracle of Lists

Can I accomplish anything, anything at all, sitting in a hot car shoving a sandwich into my piehole as quickly as I can, while savoring a few moment’s peace before returning to my sweatshop-esque job? Anything? Some inspirational words strung together in a mildly pleasing manner, or even an idea to escape this job purgatory – this endless treadmill going faster and faster and faster, until my body gives out and I collapse and die, then get flung against the wall like in those YouTube fail videos?

No? Okay, then.

Well, at least I fucking tried. Because that’s what I told myself I would do: take one small step every single day to change my unsavory life and work situations, in order to ease my stress and hopefully find some happiness. If it doesn’t work, it doesn’t work. But I have a sneaky feeling a magical change will not just happen upon me unless I do something, however small, to initiate it. I can’t just sit here dreaming, pretending I’m someone else, somewhere else, being all happy and fulfilled and shit. I need to take concrete steps – even baby steps, if necessary – so that maybe, just maybe, I can someday feel happy and fulfilled in my real, actual, non-imaginary life.

Like, maybe every day I should work on my resume and portfolio, just a little. (I have a degree in Graphic Design.) One day it will be complete, and then I can show it to people. Maybe, just maybe, one of them will see it and say, “It’s okay that you let your technical skills deteriorate while you worked at that sweatshop for over a decade; you have potential, so we’ll get you up to speed.” And then they’ll pay me a good salary.

Or maybe I could work every day, just a little bit, on my various writing projects. One day, eventually, I will finish some and show them to people. Then maybe someone will say, “It’s okay that you forgot most of the vocabulary words and grammar you learned in high school, and that you were too afraid to even apply to the writing college you wanted to go to back when you could actually write, so you got involved in an abusive relationship for 9 years and let your dreams wither and die.” (I’ll interrupt them right then to point out their run-on sentence. That could salvage some lost grammar points.) Then they’ll tell me I have potential, and ask to publish something I wrote. Like, for money and stuff. I’d really like to have money. In fact, my biggest desire right now is to have the lower part of my Maslow’s hierarchy of needs met. I know, it’s a tall order.

Maybe I could also write a list of everything I want in life as though I’ve already gotten it, and meditate on it every day. Several years ago I heard of a lottery winner who meditated on a certain number every night, and even slept with the number on a piece of paper under her pillow. She ended up winning that exact lottery amount. It was a lot, too. Like, over 20 million. Why couldn’t that be me? I’d have to start playing the lottery for it to work, but maybe it’s do-able.

Uh-oh. Lottery fantasies. I’m turning into my mother again. Let’s switch to a more realistic list of desires, because who’s kidding who? There’s no way I’m going to drag myself inside some gas station every week to stand in line for lottery tickets. (If not for this aversion, I could totally win, though.)

So, here’s my list of goals…

Wait…I just read an article saying that people are less likely to achieve their goals when they share them. And it was backed by actual science, I think. So maybe I shouldn’t broadcast my goals to anyone. Hmmm…

Here’s what I’ll do instead. I’ll copy down the list I made when I was acutely ill with MCS. As part of the Gupta Programme, which is responsible for my 80% recovery from MCS (roughly), I was instructed to make a list of what I’d like to see my future, healthy self doing in my future, healthy life. I made the list, though it was hard. I cried while writing, missing my healthy self, and hesitant to fantasize – however briefly – about a future I ached for more that anything, but which might not come to fruition. But as skeptical as I can be, I am also very open-minded, and willing to give almost anything a chance. So, I made the list and dove into the programme. (That’s the British spelling, BTW, otherwise I would have used my grammar skills to correct it. Or spelling skills. Is spelling an aspect of grammar? I really have forgotten everything, haven’t I?)

Guess what? The programme worked. Yes, I have thoroughly slacked on the exercises the last couple years, and really should get back to it, but at the time it was my savior. It pulled me out from the depths of hell so I could breathe again. Literally. The MCS gave me breathing trouble at times. Either that, or it made the act of breathing stressful when I inhaled chemicals which made me ill. Can you imagine what it feels like to experience stress just from the simple and vital act of breathing? I didn’t think so. But don’t feel bad like you lack empathy, or anything – most people can’t imagine such a thing. (Well, I guess people with asthma and other lung conditions can. Uh…nevermind.)

ANYWAY, many months after experiencing recovery, I ran across my old list. Guess what? Every single thing I wrote down happened – all the things that made me cry to wish for, because I thought I’d never experience them again. I was astounded. (Well, not EVERYTHING happened. I couldn’t move and paint walls or garden, for instance. But I’m certain I could have done those things and remained healthy had there been an opportunity.) I’m not saying the act of making the list was magical, but I am saying that I got to experience many things I had formerly believed were utterly impossible. That was the miracle.

So, at the end of this post, I think I’ll copy that old list instead of my current list, which I plan on making later. That way I don’t jinx my goals. When everything on the current list comes true, or at least a significant number, I’ll post that one, too. Until then, it’s for my eyes only.

Hey, look…I actually did string some words together on my lunch break! That’s a minor accomplishment. I’m terribly late returning to work, though, so it ended up costing me $15 in wages, or approximately $2 after taxes. LOL. But that’s okay, because I took a baby step. Maybe tomorrow I’ll try to take a baby step that doesn’t cost me the money I’m trying to materialize in my life.

Also, I feel better. A little inspired, even. And I no longer have the urge to take a nap on the train tracks. Maslow’s hierarchy of needs, here I come!* (I wonder if that sentence has ever been uttered in the history of language.)

*Okay, the article I linked to earlier informed me that I do not need to have my lower-rung needs met in order to be self-actualized, but god dammit, I still intend to eventually get my basic needs met before I drop dead, hopefully to avoid dropping dead prematurely due to the stress of not having my basic needs met. And fuck grammar – I’m gonna leave that possibly run-on sentence with repetitive words alone. I aced this stupid grammar test the other day. Doesn’t that count for anything?

Future Self list, from approximately 2011:

1. I am wearing makeup
(I could barely use any personal care products back then, let alone frivolous makeup.)
2. I have a nice haircut
(I couldn’t visit salons because of their ambient chemicals. My hair was a long, frizzy, stringy mop with roots growing out for 2 years.)
3. I am sitting in a coffee shop writing, reading, and drinking coffee
(None of that was possible when I was sick(er).)
4. I am painting the walls of my own new house
(I couldn’t tolerate freshly painted anything. In fact, fresh paint in my workplace contributed to my development of MCS.)
5. I am gardening
(I think I just wanted to get my hands in some dirt. I probably could have had an organic garden, if I had had my own yard and the stamina to actually grow it. Okay, maybe I couldn’t have gardened while sick with MCS.)
6. I am visiting friends
(People’s personal care and laundry products made me ill, so I stopped visiting friends.)
7. I am on an airplane
(That thought was a joke when I couldn’t grocery shop without getting sick.)
8. I am on vacation in a city
(Again, a joke. Plus, pollution.)
9. I am on vacation someplace tropical
(Travel was difficult/impossible back then. Now that I’ve traveled again, I am officially counting an East Coast beach as “someplace tropical”, because fuck it – it’s a beach. Close enough.)
10. I am visiting my family
(I couldn’t do that for years. My one attempt was disastrous healthwise.)
11. I am eating delicious food
(I ate a boring-ass diet for a couple of years due to food sensitivities. None of it was delicious.)
12. I am hiking outdoors
(I was too sick to exercise or enjoy nature back then.)
13. I am laughing
(I rarely laughed.)
14. I am happy
(I was more miserable than I ever imagined possible on a daily basis. Not that I’m the epitome of happiness now, but at least those pesky death fantasies are mostly gone.)

See? The miracle of lists. Now I’m off to make a new one, because as miraculous as it was to achieve these goals at the time, they no longer suffice. It’s time to get out of this limbo/purgatory, for fuck’s sake, already.

I was right, and I forgive you.

When I was 20, I developed a permanent, stationary blind spot in my field of vision, so I had to get one of those scans where they inject your blood with dye and examine your eyes. (Which was not fun, BTW.) They determined I had something called Central Serous Retinopathy, and that the spot was permanent. It sucks, but thankfully it’s off to the side a little and not directly in my center of vision, otherwise the last 17 or so years would have been significantly more problematic.

ANYWAY, that’s not the point. The point is, I developed this spot while taking Prednisone for the flu. During the last 17 years I have asked at least 3 doctors (including eye doctors) whether Prednisone could have caused my little blind spot, letting them know the drug insert even warned of potential eye problems. Well, I KNEW it caused it so I TOLD doctors rather than asked, and every single one of them dismissed me with “That’s not possible.” Actually, I wasn’t quite so shitty about it – I told doctors when they questioned why I won’t take steroids anymore. (Of course, telling them this made me seem crazy, a concept which even pre-dates my FQ experience.)

Well, I had to go to the eye doctor today for blepharitis that will not seem to heal, and he rattled off a handful of possible causes of Central Serous Retinopathy. Guess what? Steroids was one of them.

I almost shouted, “I was taking steroids when it happened, and every doctor I’ve talked to said there’s no way steroids could cause it!” I practically jumped out of my chair. I’m slightly proud of myself, because I wanted to say “Those fucking pricks!”, but instead said, “I guess they’ve learned some new information, huh?” And he said that yes, they have, and that kind of thing happens often.

Then I imagined myself in a doctor’s office as a 70+ year old, listening to someone tell me how Fluoroquinolones can cause chronic, multi-system illnesses in addition to peripheral neuropathy and tendon damage – basically telling me what I obviously already know, just like what happened today. Only if that happens, I won’t be so nice about it. I’ll say in a curt, crotchety old lady way, “I’ve been telling you fucking assholes that since back in 2008.” I think it’s going to happen someday. (I’m going to guess around 2053, LOL.)

Okay…it’s possible I’ll be polite rather than crotchety, but I can definitely picture a scenario like my steroid eye spot story happening with FQ Toxicity eventually. (And maybe even MCS.) They won’t be able to ignore this problem forever.

It goes back to this concept, which is totally foreign to some people: when presented with unfamiliar information, be curious and open-minded rather than dismissive. (Which could apply to any topic, not just medicine.) I’ll bet that those doctors could have searched and found SOMETHING about steroids causing my eye condition if they had tried, even way back in 1998. Instead, they dismissed me.

The moral is: stop dismissing patients like me. Listen to us. Study us. Our adverse experiences are mirrors showing the world that something is terribly wrong and needs to be fixed.

Having said that, I do actually understand why doctors dismiss us. Can you imagine learning you prescribed a dangerous drug to hundreds of thousands of people, likely ruining the health of who knows how many in the process? Learning you were misled by pharmaceutical companies, and that the whole modern medical paradigm into which you’ve invested your life, your time, and your trust is deeply flawed? That you’ve been unwittingly violating your Hippocratic Oath for years and years on end? I, personally, would be devastated to learn this. I almost can’t blame a person for clinging so tightly to their belief systems that they’re blinded to the truth.

Almost. But not fully. Because while I have compassion and empathy for doctors in this situation, the need for change trumps their need to stay nestled within blissful ignorance – the safety nets of their lives – while people continue to suffer at their hands. People are being harmed every single day by what medical science has gotten wrong, and it’s time for acknowledgement, change, and healing to occur.

Also, they’re shams, anyway, these safety nets. They don’t exist. The rug can be pulled out from any one of us at any given time, no matter how secure we think we are. (This applies to any aspect of life, including our beliefs.)

I forgive them, though. There’s something beautiful, in a strange way, of someone saying “I thought I was right, but I wasn’t. I’m so sorry I hurt you.”

Even the ones who can’t say this, who can never admit the truth – I forgive them because they’re human, and flawed. Just like myself, and just like everyone else. The difference is, the harm most of us inflict on others does not occur on such a grand scale as when doctors prescribe poison masquerading as medicine. But I still forgive the ones who don’t acknowledge me, if only because of this saying, which I’m sure many of you have heard before:

Holding onto anger is like drinking poison and expecting the other person to die.

God knows I don’t need anymore poison in my life.

To those unwilling to acknowledge Fluoroquinolones harmed me…okay. You’re not ready – I get it. But someday you’ll have to be. Your time is limited. The world doesn’t need anymore poison, either, and someday you’ll be forced to stop giving it out like candy and glossing over people’s suffering.

I look forward to that day.

And even if you don’t want or need it, I still forgive you for being human, and for doing your best – even if the best you could do was calling your patient crazy and insisting their symptoms were all in their heads. I haven’t always treated people well, either, or been eager to accept another person’s perception of a truth I wasn’t ready to hear. Because I’m only human, too. Just like you.

I hope the people I’ve hurt can forgive me as well.

Life Can Go Fuck Itself

Sometimes I’m grateful for the lessons my hardships have brought. I’m grateful for the inner strength I was shown I possess, and for the self-awareness my suffering has helped me develop. If you look hard enough, you can usually find something positive born from tragedy, however small. And gratitude for life’s blessings is important in this tumultuous world.

Other times, however, I want to say “fuck all that” and tell life to go fuck itself.

Let me clarify that I am EVER SO GRATEFUL I’m no longer in the throes of acute flox symptoms like near-constant neuropathy, brain fog, headaches, and excessive food and chemical sensitivities. That was the worst experience of my life, and the very definition of hell on earth. I’m glad it appears to be over.

However, life, can you please fuck off with the random ailments, already? Besides the intermittent facial pain I described here, I also have varying degrees of nasal allergies/sinus problems, mild insomnia, joint pain, blepharitis, dry eyes, and sometimes my glands swell up for no apparent fucking reason. (But they always go back to normal, so I guess I’m not going to die from whatever is causing it.) I also have some random ass problem, possible TMJ disorder, malocclusion, and other dental issues. I’m sure there are more ailments I’m forgetting at the moment.

Besides health, here are some other reasons life can go fuck itself – that it’s nothing more than an exercise in irony and psychological torture. Such as:

I love cats and have had cats for almost my entire life. Now I’m allergic to cats and can’t enjoy their company anymore.

I am quiet and peaceful, but surrounded by noise at work and at home. I just cannot get away from it. Adding insult to injury, when I wear earplugs to block out my neighbors noise so I can fucking sleep (when I don’t have insomnia, that is), I am then made keenly aware of my tinnitus, which is mostly in my left ear for some unknown goddamn reason. Yes, I’ve been to the doctor. The answer to my ear woes is “maybe allergies”. Because they itch, too, just like my eyes.

Next up: food. No, I don’t get intense migraines, brain fog, neuropathy, or body pain after eating certain foods anymore. Thank god. That was another version of hell – the lack of ability to feed myself without becoming acutely ill. But sometimes I still get mild versions of those ailments, or I get things like sneezing episodes after eating. I still have to be careful.

Sick of the constant food diligence bullshit, I recently told my gluten issue to go fuck itself. I then discovered that sometimes I feel fine eating gluten, while other times I pay with diarrhea and stomach pain. And I think it might play a role in those ass woes I mentioned earlier…but I’m not sure. So I’m not debilitated by food sensitivities anymore, but they still bother me to a degree.

My point? Before Cipro fucked me up, I was adventurous with food. I would eat almost anything. I loved tasting different foods and drinks, and would get so excited browsing grocery aisles or restaurant menus for something exotic to try as a little treat for myself. Now, even though I can tolerate more than I could 5 years ago, I can’t eat or drink anything I want with wild abandon without fear of health repercussions. I can’t just relax and enjoy food and drink…or any fucking thing, it seems. This is yet another instance, besides the cat thing, of life limiting or taking away what I love.

(Also, I’m sick of merely TOLERATING things. I want to ENJOY them without worry like many lucky people get to do in their lives – people who have no idea how lucky they actually are.)

Now I’m thinking of this brain meme I found a couple years ago. (Is that what these things are called? God, I feel old.)

This one:
10011479_798014890219524_1256318925659266783_n

That’s what it feels like life is doing to me sometimes.

Love cats? Become allergic in adulthood and never have a cat again.

Love silence? Forced to live and work with excessive noise.

Finally (mostly) overcome floxing and MCS? Can’t enjoy it because of lingering, apparently untreatable ailments.

And I can’t throw money at these problems to, for instance, find a new place to live or go to doctors for allergy testing & treatment, because my job doesn’t pay enough.

Oh, that reminds me:

Hate your job? Steadily become more and more busy until you feel like that frog who has no idea he’s slowly boiling to death in that pot of water, then have no energy to seek additional skills during nights and weekends to find another job.

Yeah…Fuck you, life.

That wasn’t even all of it. Here are a couple more:

Acquire health problems? Get the ones no one has heard of or believes in so you get a mental illness label instead of help and compassion.

Love to write and create things? No free time, or if you do get free time, you’re either too sick or too tired.

Oh, and blepharitis? That eye condition I mentioned earlier? Is made worse by crying. Guess what people do when life dishes out neverending, stressful, troublesome bullshit? Yeah. They cry. Then their eyes feel worse. Then they cry some more because their eyes feel awful. Then their eyes feel EVEN worse, triggering MORE urges to cry, which they must then fight, so they won’t spend the next day in utter misery, fantasizing about gouging their own eyes out while working their noisy, shitty-assed job.

I mean, really? AM I in hell??? GAAAAHHHH. I’m sick of this shit.

I realize many people have significantly worse problems than I do, but that doesn’t diminish my right to be dissatisfied with the unpleasant and somewhat cruelly ironic aspects of my own life, does it? No, it fucking doesn’t. Because it feels like life has given me small tastes of its various comforts and pleasures, only to take them away and say, “No, you can’t actually have that. But first you can feel how much you love it before I take it away, then make your life not too torturous, but JUST HARD ENOUGH so you can never relax and fully enjoy it.”

I resent the fuck out of that, too.

When I start to resent it, I’ll sometimes have a pity party and think things like “Why can’t people like my boyfriend’s ex-wife get food allergies instead of me? She has the palate of an eight year old, so food allergies would hardly even impact her diet.” Or “Why can’t I have a health problem mainstream medicine acknowledges, so I can get ribbons and charity walks and attention instead of being shunned by society?”

Do you realize how fucked up it is to envy another’s illness? Not to mention, these are just poisonous thoughts in general. They’re counterproductive, and they help no one. They need to go. (But I’m only human, so first I need to forgive myself for having them, I suppose.)

Plus, fuck society. Whoever treats me like I’m crazy instead of sick can go fuck themselves.

God, I’m in a terrible mood.

Also, I’m tired of grasping for things to be grateful for in order to offset my difficulties. I’m tired of looking for little things to keep me clinging to this sometimes shitty life. Things like, “Oh, that flower is so beautiful. I’m glad I’m alive to see it. I guess the world isn’t entirely a cesspool of shit after all.” I had those types of thoughts back when I was suffering so badly I was fighting suicidal urges. As ridiculous as it sounds, they helped.

They don’t help much anymore. I’m tired of having to appreciate a goddamn sunset just to make living more bearable. I don’t want noticing random beauty to be my only joy…I want to find joy in GRABBING LIFE AND LIVING THE FUCK OUT OF IT. But how do I do that when I still struggle, and all these things seem to hold me back? When I can’t figure out how? I don’t know, and I’m sick of constantly wondering but never finding the answer.

Sigh. Life is hard, and sometimes I’d really like a break. Once again, I find myself hoping for some glorious afterlife to look forward to after I drop dead. Not one in which some guy saves his favorite people but banishes others to eternal suffering. I’m talking about an afterlife of joy and love and peace for everyone – even the fuckups of the world. A resting place along our journey, until we move on to whatever happens next. I think it exists, but of course I won’t know for sure until I get there…unless everything will simply be snuffed out with my last breath. But I don’t think that’s how it’s going to go. I think I’m going to learn what this crazy bullshit on earth was all about, and stop telling life to go fuck itself.

Maybe if I try hard enough, I can learn to stop saying it while I’m still here. But first I have to wait for my (probably delusional) optimism to return, because that shit has left the building.

Jokes

Hey. Heyy yooo guys…

Or, if you prefer Goonies to Drunk J. Crew, I’ll say it like this: Heyyyy Youuuuuu Guuuuuuuyysss!!!

Or, I could just say it normally…

Hey, you guys…I wrote 2 jokes. They’re pretty awful.* Since coming up with 2 jokes took me 37 years, I should be ready to launch my standup career in approximately 2000 years. Luckily, since I believe in reincarnation, I’ll have plenty of lifetimes to come up with new material, and also learn how to speak in front of crowds without sweating through my clothing. For those of you who don’t believe in reincarnation, good news: you won’t have to listen to me attempt to tell lame jokes for the next 2000 years.

Anyway, ahem…

Joke #1.
I’ve learned a lot from going to doctors over the years. For instance, be careful trying to joke around with them. Like, don’t go in there and say, “Does this bump on the inside of my cheek mean I’m going to die?” They might try to diagnose you with hypochondria because they don’t understand your humor. I’m not 100% sure what hypochondria is, but I’m pretty sure it’s fatal.

Joke #2
Medical researchers have determined that adults can strengthen their brains and stave off dementia by exercising their minds, and performing different types of activities that deviate from their normal routines. When I heard this I decided to deep clean both of my bathrooms. I don’t know if it helped, though. I don’t feel any less demented.

Bah dum bum…

It’s entirely possible I’ve heard these jokes from someone else* at some point in the past, and my mind buried them for a while, then unearthed them one day and claimed them as my own. Maybe I need to clean more bathrooms so my brain can grow stronger neural networks and start pulling its weight around here.

*If these are, in fact, some famous comedian’s jokes, I think they’re amusing. If I actually thought of them myself, I think they’re lame, because I have Imposter Syndrome. But I’ve decided to practice putting myself out there even though I risk looking stupid, because otherwise my hermitic self might attempt to spend the rest of my adulthood living in a cave away from humanity once my son is grown, which won’t leave me any money to buy things like sushi or orange flavored peeps. And that would totally suck, because those things are fucking good.

Image1 (4)

Why My Brain Sucks

I figured out why my brain churns out ideas for writing and art at inconvenient times, when I can’t actually devote time to making my ideas a reality. Besides the underlying fear I wrote about here.

See, automatic activities that occupy my brain without requiring excessive thought, such as driving, getting ready for work, and even working itself (since my job is torturously mind-numbing) actually free up part of it to think about ideas. The paradox is that I then have no ability to sit down for hours and convert my ideas to reality, because I’m too busy doing these mindless activities. This is why I peck away at my tiny phone keyboard on my lunch break, or at stoplights, or in the midst of other activities in a furious attempt to quickly record my ideas before they flee from my brain forever.

I think it’s also my mind’s attempt to capture my thoughts before I subconsciously sabotage myself with those underlying fears in whatever form it takes – whether it be procrastination, lack of motivation, or the lack of ability to think of creative ideas when I actually do have free time. So, when that neurotic, underachieving part of me is occupied with mindless tasks, the creative part of me that’s driven to fulfill its potential says “Okay, she’s busy now. Lets inundate her with ideas before she blocks them again.” Because it knows that another aspect of me – the compulsive, perfectionist, detail-oriented side – won’t be able to let it go, and will pull into a store parking lot on the way to work to type out a thought before it’s gone forever. (Forever?! OMG, NO!!!)

Meanwhile, yet another aspect of my brain is watching all of this impartially, the casual observer of my life who has no power and is just along for the ride.

This makes it seem like my subconscious mind is in a battle with itself, unbeknownst to me most of the time. Which is kind of creepy. Like my underlying mental processes are more in control of me than I realize, in some kind of host/parasite relationship, or like I’m some kind of automaton – a slave to my own programming. Which is interesting to ponder, but also makes me shudder a little and ask the various parts of my warring brain, my own internal contradictions, “What’s going on? This is ridiculous. Can’t we all just work together, here?”

If the parts of my brain were forced to answer back, the creative part would say, “Of course! We all just want to be happy and creatively fulfilled in life! Isn’t that why we’re here to begin with?”, all idealistic and exuberant and starry-eyed and shit.

The procrastinator/perfectionist/scared asshole would then say, “No! We can’t do anything with ourselves, because then we’ll find out how awful we are, and so will everyone else! Moreover, we can’t handle being happy or successful, because what will we worry and obsess about then? OMG, we’ll die!”

Another part of me, my main personality supposedly in charge of all this madness now must try to gain control of these warring aspects of myself. Like a mother forced to wrangle two toddlers who try to run in opposite directions in the grocery store parking lot. Or intervene when the one always tries to trip the other, and shrugs when she falls on her face and cries. Then says, “I told you you’d fail. I don’t know why you even tried.” I’ll have to pull that one aside and say, “She only failed because YOU tripped her. Go sit in time out for the afternoon.” But it will be too late because the enthusiastic, creative one who tripped and fell will then be physically and emotionally wounded, rendered unable to do anything good for the rest if the day, even with the instigator out of the way. So the instigator still gets to sabotage things and gain attention, even if she’s out of the picture. What a little bitch.

Then I would turn to the observer side of me and say, “Thanks for making me aware of this situation, but do you think next time you could maybe do so a little sooner, or try to address the situation yourself? Stop sitting on the sofa of life eating Cheetos for once.”

And it would reply, “But this is prime reality TV right here, and I’ve got a front row seat. Remember, there was once a time when I didn’t tell you shit. Be nice to me, or see how quickly I can return to silent mode.” Then it would remind me of its role as an observer, and gently suggest that I take better control of these various aspects of myself. “If you want me to do it, I’m going to need a bigger paycheck and a more impressive title. I won’t hold my breath.”

Then I would apologize and walk away with my tail between my legs, vowing to do better next time.

Yes, these contradictory, warring parts of my brain resemble petulant children, even the conscious part which I consider the main aspect of my personality, the one supposedly in charge. No wonder I have problems.