Random ramblings, memories and fears

 Triggers.

It’s a word that’s used in everyday parlance these days but to those of us with an addiction, the word is more than simple things which upset us. Triggers bring up a myriad of emotions which we are seldom prepared to deal with. For me, they bring up shame, regret, pain, and denial among others I can’t even specify right now. I’m working on one right now, the worry about being judged by others which is a constant for me. I’m sitting in the Starbucks near Anthony’s house. I am wearing shorts and have psoriasis breakouts on my shin. The other people sitting at the communal table with me aren’t staring at me or anything but I have my headphones in and can’t hear what they’re talking about. Who am I fooling? Even if I could hear what they were saying it wouldn't matter. I feel like I know what they’re thinking. 

Mind reading is a big problem for me. It has ruined friendships, old and new, but I have an incredibly difficult time taking people at their word especially when they have been shown to be anything less than totally honest with me in the past. I am currently working on this problem with a friend right now and it’s bothering me a great deal. She is telling me to believe her whole at the same time admitting that in the past she’s had difficulty being honest with me. Even now, in her last message, she admits this, saying “I value our friendship but I get those actions don't reflect that, unfortunately I'm not able to give my best self to people right now”. 

Right now. There’s a whole episode of How I Met Your Mother about this phenomena the characters called being on her hook. I fully admit this is a woman I wanted more than friendship from and was very honest about that fact. When she said she didn’t feel the same way I was totally prepared to just be friends but she gives me reasons to not believe the things she tells me quite often. I simply don’t know, at this point, if walking away is the correct thing to do or should I show more patience and empathy for her. I’m torn and I suppose that there’s no real way to know if the decision I make is the correct one in hindsight let alone right now as I make it. She struggles with mental illness as much as I do and is going through a great deal of strife at the moment. Having said that, she has decided to shut me out rather than be open or even honest with what’s going on in her life. She calls me fascinating but treats me as an afterthought. Another good friend has told me that I deserve better and I wish I could accept that but I’m having a difficult time with the idea that I deserve to be not unhealthy let alone happy. 

And to say that all of this emotional bullshit has me torn and triggered is an enormous understatement. It’s a good thing I am self excluded from the majority of my online gambling websites I used to use. That said, I know my Pokerstars exclusion has run out. I purposefully deleted it’s password from my manager and in the past ten and half months I have (thankfully) forgotten my PIN used to sign into my account. But today of all days, while I’m stone sober and simply sitting in a coffee shop, something inside is urging me to log in and access the slots once again. I am sweaty and breathing hard. Not quite an anxiety attack but a bout of general nervousness from being in a public place with forty or so people I don’t know. 

Instead, I have just sent Pokerstars a request to self exclude for two years. I need this. I accessed my account and found out my last self exclusion expired on January fourteenth of this year and I could gamble if I chose to. I wish they would email me back, 

In the meantime I am doing a remembrance of different times, specifically my days hanging out in the swing music scene. Times when I drank too much, danced too little and took life a little less seriously. I miss the music, the venues, the people and being able to walk up to any woman and ask her to dance without her thinking it was a prelude to a sexual advance. I do wish that, during the years the scene was happening, that I’d lived in Vancouver rather than the outskirts because I’d have been able to immerse myself even more. I miss the dances, the concerts, searching for vinyl at Krazy Bob’s Records and just riding in Gord’s car listening to the new swing compilation CD one of us had picked up from My Generation records and tapes in the Willowbrook mall. I guess we all have memories we yearn for and that we all think our memories are better than everyone else’s but in my case, they are.

I got my confirmation of self exclusion from Pokerstars for two years, to expire on March 30 of 2025. That’s a relief. I was able to distract myself long enough to get through the stress I was feeling until it came through. It’s hard to describe the feeling, the craving, the urge to log in and put ten dollars down on a few spins of the slots that the site has added. I don’t even want to know which ones they’ve added since May of last year because I’m sure that one or two would be favorites from when I was going to the casino. I feel as though I’ve experienced something that psychotic dictator Shan Yu wrote:

“He said "live with a man 40 years,

share his house, his meals, speak on

every subject. Then tie him up and

hold him over the volcano's edge.

And on that day you will finally meet

the man”

I was just over the volcano’s edge and my thoughts went to a better time in my life, full of friendship dancing, music, and joy. Does that mean my current life is that bad or the life I had back then was so much better? I often hear people say that their lives get better the longer they live but I honestly don’t feel like that. I have a better, more honest connection with my friends and those family members who have stuck by me, as few as they are but I have so little control over what I’m doing each day and how I’m surviving. I am literally living at the whim of my government and the charity of friends. Strange that my thoughts would turn to that time in my life though because it is full of so many regrets. As I say that, Sledgehammer by Peter Gabriel just came on my spotify, remembering the innocence of late high school for me, my first crushes and thinking I knew so much about the world when I really knew so little. Maybe ignorance truly is happiness…

It feels like I’m letting spotify write this journal entry for me. Lavay Smith just came on, swinging away and I’m reminded of my trip to San Francisco to see my friend Cory, who hasn’t spoken to me since I told him that I have an addiction to gambling and that I stole fifteen thousand dollars from my mother. I found it ironic that he reacted the way he did because he’s dealt with mental illness and addictions of his own. Maybe that’s why. Perhaps he was made uncomfortable by my actions or perhaps it was the compulsion itself that he couldn’t handle. One way or another, we’re not friends on facebook any more and, as often as I see his profile suggested to me, I haven’t had the guts to send the friend request in an effort to rekindle the friendship. He once accused me of being too proud to accept his help when he wanted me to be part of his hockey pool and he had offered to pay my way in. I told him I wasn’t too proud but couldn’t bring myself to admit it was actually shame that stopped me. Now, I guess it’s fear that’s stopping me because if he refuses my request I’d be shattered.

Over the last twenty years I’ve seen friends come and go. Some I’d known for decades while others I’d known for months but losing friends due to my gambling feels different. I spent the majority of my life building a wall of lies because I was terrified of letting people see who I truly was and being rejected for it. Every time I embrace another level of honesty I am making myself more vulnerable and I am being forced to accept that some who I have truly respected have chosen not to, or are unable to, reply with the same level of respect. Maybe it’s learning to respect myself that is the only path to happiness. If that’s the truth then I’m in serious trouble because I don’t even know where the path to that respect is let alone how to navigate it. Every time I have tried to get help with that goal, especially recently, I have been thwarted by something and as Randy Pausch once said, some brick walls are made out of flesh. He said that the brick walls were there to give us the chance to prove how badly we want something. My issue isn’t with that concept, it's with the very concept of self empathy and without that how can I be expected to find a direction. I feel like I need to borrow someone else’s compass to at least begin with a direction to go. 

Did you ever play those text based adventure computer games from the early days of the computer era? They were like a Dungeons and Dragons game style but no map was given to the players so they’d have to either draw their own as they played or would have to memorize where everything was as they played. But at the very least, when playing those games if you said something like “go east” you could know that you were facing east and were headed in the intended direction. I’m hoping I’m on the path and am facing the correct way but I have little evidence to support my decisions. I haven’t gambled in over ten months but I’m not even sure if that’s a direction. All I know is that I’m not currently going backwards but, again, that isn’t an arrow I can follow and it’s likely that, were I to step backwards, I wouldn’t know of it until it’s too late. 

I have a short amount of time to decide if I want to take the neuropsychological assessment that the counseling team wants me to submit to. There are two possibilities, I suppose. They’re either going to find something or they’re not. If they find something, maybe that will help and maybe it won’t. Ironically, I don’t think I’m afraid of what they may find. I’m more worried that they may find nothing and find out this crap my mind is feeding me is all in my head once again rather than having a rational reason. I trust my mind so little already. I don’t want to find out that every fear of delusional thinking is well founded because my brain is simply messed up and there’s nothing which can be done about it. I mean, I think I’d rather be schizophrenic than have what I have because there are medications which can help and the idea of taking pills to help my mind has never bothered me. What bothers me is a doctor telling me there’s nothing that can be done to help me and that I’m destined to be like this for the rest of my life. 

Neena's Homework

 

Is my victimhood a comfort response? 

I’m having a great deal of difficulty with this concept; victimhood. 

Definition:the condition of having been hurt, damaged, or made to suffer, especially when you want people to feel sorry for you because of this or use it as an excuse for something

I have barely, in my life, begun to accept that my brain doesn’t work the same as most people’s and now I have to potentially ignore my diagnoses and just pretend like I'm neuro-typical again. I told myself that lie for years while I was lying to others. My BPD tells me that I deserve to be left by others, especially when I care about and trust them. My anxiety tells me I don’t deserve to be happy. My depression tells me I don’t deserve to live. 

And if it’s a comfort response then I don’t deserve to be on disability because I could work, despite barely being able to function most days.

Do I not want to accept my responsibility to myself and others? 

I accepted my responsibility when I was 15 years old and I had to start working full time so I would have clothes on my back, while my mother was having panic attacks in the local grocery store. I accepted my responsibility when I began to care for my mom when she stopped cooking and cleaning for herself. 

The premise of the question implies that my worst fear is true; that I am a leech on society and on my friends. I am a burden to those I care about and the world would be better off with me either getting off my ass or killing myself. This feels an awful lot like those people who told me to suck it up and just get on with my life.

“Get busy living or get busy dying”

I’m desperately trying to find reasons to keep trying and my counselor is basically telling me two things: I am my own worst enemy, which I already knew, and I don’t do enough to deserve to live.

So I write, trying to figure out which is true while attempting to put my thoughts and feelings into words that make sense to myself and, hopefully, others. But is expressing my thoughts to others simply another version of victimhood and am I unworthy of having my thoughts and feelings validated? Do I want to be understood or pitied?

What I asked Neena to do was help me understand why I don’t feel like I deserve to be happy and she basically implied that I’m a failure and none of it is due to my illnesses. To say that her response seems to be unhelpful is an enormous understatement.

She wants me to identify a concrete goal for me. I feel like I gave her one and she told me I was wrong and that feeling like I deserve to be better is the path, not the goal.

Why am I getting in my own way?

Another implication that my illnesses are my fault. I keep comparing what Neena has said to me as if she had said it to a cancer patient and I’m pretty sure she comes off looking like an ass in the process. I admit that my thoughts and emotions are what is holding me back but I’ve always been told that they are uncontrollable. I can challenge them. I can ignore them. But how the fuck do I change or silence them. 

I’m sitting in Starbucks in a Rick Rypien jersey because it comforts me, a reminder that even from the depths of the worst life can deal us, good can come. Wanting it gave me hope for years. Owning it gives me strength to get through the day. Wearing it makes me feel like I belong in the world. Sitting here, with my headphones in as I type with a movie playing doesn’t mean that I want sympathy or pity from others. It means that I am more comfortable with the sounds of a coffee shop in the background when I want to write rather than the silence of a home or even my friend’s basement. 

What am I afraid of? 

I am afraid of almost everything. I am afraid to live. I’m afraid to fail. I’m afraid to love and care, especially for myself. I’m afraid of others' words and actions towards me. I’m afraid of judgment. I’m afraid of smelling bad on the bus. I’m afraid of suffering a stroke and becoming even more dependent on others. I’m afraid of getting up and getting a refill on my coffee for fear that the redhead across the Starbucks will see me and judge me for my size. 

But I’m not afraid of death. 

Death and nothingness feels like a release from everything this world has cursed me with. That’s what I crave. I crave not feeling anymore. That’s what I felt while I was gambling. I felt nothing, whether I won or lost it didn’t matter. I could feel nothing and I loved it. It’s why I drank when I was using alcohol to self medicate and why I still crave it all too often, both the alcohol and the gambling. 

I am reminded of when I ended up in CRESST. The night before, I had a panic attack but as I lay in bed, with my heart pounding and unable to breathe, I couldn’t rule out a heart attack. It was then that I realized I didn't care if I lived through the night. I wasn’t any better than I was four years earlier when I planned to take my life, I just hadn’t made any effort to do it. That’s how I feel these days and I find myself only surviving, and not living. 

I tried to tell this to Neena, to explain it to her but she dismissed what I was telling her. She told me I was doing more than simply surviving because I was shaving my beard and dressing and showering every couple of days. She doesn’t get it and I’m doubting now that she ever will based on what she’s asking of me. I told her I wanted to make my life mean something by helping others but she doesn’t understand that either. I just want to mean something to someone and if it isn’t me I want it to be someone else and I don’t understand why that’s so hard for her to comprehend.

1211 random words and random thoughts

So here I am: single again. It’s not planned on and I’m definitely not pleased about it but I’m also not surprised. CJ had been growing more and more distant over the last six weeks or so and her ending things was just the expected culmination of that space between us. I reached out multiple times and not shunned over and over again, her saying that she was going through too much and couldn’t deal with it. That much is definitely true. She’s had a rough time of things lately but try as I might, I fail to see the logic behind pushing away the only person who was supporting her at every moment about everything she shared. But then again, she struggled with multiple undiagnosed mental illnesses and had severe trust issues so maybe she was doing what I used to do; push people away before they had the chance to hurt me. I wish that over the eighteen months we knew each other I could have made her trust that I wasn’t going to do that. I know everyone else in her life was either using her or treating her like garbage, or in the case of her parents both, but I wanted to be there for everything. 

I took a real hit to my self esteem when she left me and it’s been a tough time for me but friends have been there and Instagram acquaintances have really stepped up. Well, some of them have and some have just sat back quietly and watched me break down. I will not forget those who reached out and were there for me. One Instagram friend has really been a rock for me, listened to everything I’ve been thinking, the good and the bad. I won’t mention her by name because her handle seems like her real name but being able to share the truth with someone in a world of people who would rather just have the polite version of events has been, if you’ll forgive the phrase, a god-send.

I’ve also made a new friend who lives in Turkey. She’s in school for psychology with the goal of becoming a police officer.(I wonder how those two things would go together. Perhaps all police officers should have to have a degree in psychology…) But she’s young and pretty and dark and interesting and the last thing I need right now is a crush on another young beautiful woman who seems to find me interesting. Sure, a rebound relationship isn’t always a bad thing but she lives even further away than CJ does and is far more confident in herself and I can’t figure out for the life of me why she finds me interesting at all. I’d be more than happy to push aside that crush and just be friends with her and I hope she isn’t interested in more than just friendship. I only have so much self control.

I’m sitting in the coffee shop (It’s called Cuatro Coffee and on my mind it reminds me of the Castro district in San Francisco, and Harvey Milk) around the corner from where my counsellor is, knowing that an hour from now I’m likely to be in tears exploring the darkest recesses of my psyche. My anxiety was spiked on the bus on the way here, as it usually does, and was worse than usual due to the fact that summer school had just let out so there were scores of kids packed onto it this time. Not helping the situation was the realisation that I’d forgotten my Ativan so I was functioning at a low level without my needed medication. Even worse, was the fact that I slept through my evening pill time last night and missed my evening medications so I’m working with no anti-anxiety meds in my system right now. This is a dangerous mental place for me to be in, with counselling coming up and my gamblers anonymous meeting coming up later tonight. If I had to guess, and my anxiety makes me guess, I’m not going to do well today. Under normal circumstances I’d skip the meeting but I haven’t been to one in three weeks and I feel like I need to go. 

But writing here is helping me. It’s enabling me to work out some of my thoughts and process my stressors better than simply throwing it all against the wall and hoping that something will stick, that a part of my mind will decide to make sense. Writing to no one in particular is like letting the entire world see what I’m thinking and yet knowing that it’s likely that I’m the only person who will ever see or read these words. I know this may end up in the book but again, as much as I’d like to see people read it and get something from it, that book is for me. Everyone needs a goal, dreams to pursue. Mine came out of nowhere a few years ago and only came into focus sixty days ago when I first went to a gamblers anonymous meeting. CJ gave me a shot that love would be a goal too but that obviously isn’t going to happen. Before I decided to turn my writing into a book the only goals I had were to stay alive and take care of my mom. Those aren’t exactly the most fulfilling goals the world has ever seen and my life showed it. Goals can be forced upon us by others, such as in the case of a project and deadline provided by an employer, or they can be purely self motivated and designed. I tend to think that the ones we create for ourselves are more long lasting and gratifying. 

Gratefulness. Now there’s a concept that is challenging to me and not in a good way. When I look at my life I have an exceptionally difficult time recognizing that which I am grateful for. It’s a level of self knowledge which I struggle with greatly and although I better understand why as I age it isn’t making the skill any easier to do. Even when I work on it I find myself struggling to truly recognize and appreciate the things which make my life possible and bearable. I have a roof over my head, a mother who loves me, and I live in a country that isn’t actively trying to kill me due to my multiple health challenges. These are things which many people, as basic as they seem to be to us, struggle to have. I’m also a cis white male in a western cultured country. I’m not just a citizen, I’m a privileged one. This makes me feel, everyday, that I shouldn’t be having such a difficult time with my life and the guilt is strong on a regular basis. 

And on that, self pitying note I have to leave this behind and go to my counsellor. I hope I can do ok in it, not that I’m being graded or anything. In fact I’m the one who grades my counsellor at the end of each session, something which I am terribly uncomfortable doing. 

Suck it up, Scott. You have to go adult now.

Goals and dreams

 In order to explain how hard it is to understand what mental illness does to you, I often use the analogy of a cancer patient. No one can understand what it’s like to go through a cancer diagnosis and it’s treatment without getting the diagnosis themselves. Yesterday, at my first appointment with my new counsellor, I had an exceedingly difficult time accepting that I deserved the help and hearing her say positive things about me. Even now, nearly a day later, just considering the possibility of getting better brings up emotions I am wholly unprepared for and the tears begin to well in my eyes. She wants me to spend this week focusing on my goals so I am trying to balance that prospect with my emotional stability.

I don’t know exactly where this comes from other than to say that I know my self esteem is extremely low and has been for many years. It may be a function of my BDP and the lack of sense of self that comes with it. It may be the lack of positive reinforcement I received throughout my life. It may be the bullying I’ve faced throughout my life due to my obesity. I honestly don’t know but I’m going to explore each possibility here. It is a core belief and I don’t expect it to change in the short term no matter what I do but it would be nice to at least have relief from time to time of the lies my emotions are telling me

Borderline personality disorder often leaves its wounded victims with a complete lack of a sense of self. This often manifests itself by removing any knowledge of what a person should do for a living or future goals (although, as I re-read this, my use of the word “should” is a sign that I need to rethink that perspective). This is my issue. I was asked by my counsellor what goals I have for the future, as it pertained to my treatment, and the only answer I had was to survive until tomorrow. That’s how I’ve been living for so long now that I don’t really have a healthy answer to the question. I know, in my mind, that I deserve to have something to shoot for but my emotions are constantly sabotaging me and nearly always drown out the logical thoughts. Does a lack of self mean I am inevitably destined to have a lack of goals and dreams or is it possible to have them. Maybe having them will help give me the sense of self I have been missing throughout my life.

When I was a young boy, I was playing defence in a game of hockey. We were killing a penalty but had control of the puck. It came back to me but I couldn’t hold the blueline, to keep the play onside, so I quickly turned and skated the puck backwards into our own zone so we could regroup. Once there, I wheeled around and fired the puck down the ice to give our team a chance to change the lineup and get some fresh legs on the ice. When I got to the bench, the coach came over and patted me on the back, saying “Good job.” That is only one of the two times from my childhood, that I remember, when I was praised for doing something well and neither of those moments came from my parents. In fact, neither of my parents ever told me that they were proud of me. My teachers were always critical of me, as school was tediously boring for the most part and I seldom applied myself, so school life was a constant exercise in not getting myself in trouble. As an adult, my employers and customers became the first people in my life to, on a regular basis, thank me for doing a good job. I became my job and my bosses became surrogate father figures for me. But even from them, positive feedback was such a foreign thing to me that it made me feel extremely uncomfortable, doubting the motives of the person giving it to me, and always questioning whether it was true or not. I simply didn’t feel that I deserved compliments and, to this day, they are distressing. 

Not all of my interactions with employers were positive. One of my former bosses knew that my coworkers were bullying me and did nothing to stop it. When I informed him, it was the first time in my life that I took it upon myself to try and end the torment that another person was putting me through. His response was that I needed to toughen up. I had been bullied all through school, from about grade four all the way to grade twelve. In high school there was a group of five or six boys who took it upon themselves to try and beat me up on a regular basis. I never asked for help from any of my teachers or either of my parents. Back then, you just didn’t do that sort of thing, especially in my family. As far as I was concerned, the correct action was to suck it up, accept that it was going to happen and try to move on. I was perpetually the victim in my peer groups, from school to sports to work. Maybe that’s another part of the reason I needed to be in a management position in each place I worked. It’s difficult to bully your boss and get away with it. 

It’s difficult to believe one deserves to be happy when they are constantly being shown to be less than normal by their peers and then not receiving positive feedback in other areas of their lives. For me, I eventually just got to believe that making others happy, making others like me by whatever means, was the main goal of my life. I tried to make my restaurant patrons happy for twenty five years. As I type this, I am reminded of a couple who used to come into the last restaurant I worked at. If I apologised for anything, keeping them waiting for me or a problem with their meal, they would admonish me for doing so. They said that apologising made me weak and that I should stop. Their point of view made no sense to me at the time but looking back, I can see a curtain logic to what they were saying. I was constantly putting the happiness of others ahead of my own and eventually it got to the point where my own mental state was irrelevant. I was stuffing my dissatisfaction with my life down inside where it wouldn’t be anything I’d have to deal with. The longer I worked in restaurants, the easier it became to believe my own wellbeing was irrelevant to my life, and that’s a lesson I am desperately trying to unlearn to this day. 

And having written and thought about all of that I feel like I’m no closer to the answer to the question and it has raised another question. What comes first, the goals and dreams or the sense of self? If I don’t have a sense of self, can I even identify what my goals for the future are and, more frighteningly, does it even matter? Without a sense of self, will the goals I set be nothing more than arbitrary marks upon a timeline that may or may not even belong to me. Maybe wanting to find a sense of self can be a goal in and of itself. I have so many questions and so few answers and although I know that asking difficult questions is the path to wisdom, I am not feeling very wise today.

Casino Regrets

 Nearly a year ago, in July of 2021 I was drinking and frustrated and broke after blowing a few hundred dollars at the slot machines. Rather than going home, I went to sit at the bar and blow my last few dollars on a couple of beers. At this point I was already stealing money from my mother and yet in complete denial about my gambling compulsion. This was as close as I would come to realising how far gone I was until I hit rock bottom and began my road to recovery. As the piece goes on, my increasing inebriation becomes more and more apparent. I remember this night but looking back at what I wrote, the level of honesty I could muster at the time is a little shocking.

I don’t want to be sitting here but I had to do it. I’m typing this at the bar in the local casino, having wasted $300 and drinking away my problems. Well, drinking so that they feel a little less painful for a while. I used to drink like I was trying to punish myself but now I drink to just survive the day. I don’t drink a lot by most people’s standards. I’m only working on my third beer in four hours but I’m out of practice, so this small amount is enough to get the creative juices flowing, I hope. 

There is so little of it left in me. I used to write for fun, sober. The idea of writing without a beer in my hand is now completely alien to me. As is writing in private, now needing some sort of hustle and bustle around me to get the job done. I think about the great writers of the world sitting in their quiet cabins and producing true pieces of art. I am not like them at all, where sombre sobriety leaves me alone and overwhelmed with my thoughts and emotions.

I long for the days from my past, where life was so much easier. When I could ignore my problems, go to work, get a buzz afterwards then go home to pass out for the night. Now I have to face them and it is not going well. My mental problems overwhelm me on a daily basis and I can no longer get through the day without an anxiety attack. It’s extremely difficult just to get out of the house and participate in society without a drink in my hand. Years ago, on my days off, I used to hang out at a local Starbucks and the sound of my computer keyboard could be heard through the coffee shop. Today, it’s the sound of drunk people and slot machines which drown out the sound of my fingers upon the keys. My creativity, as lacklustre as it has become, is only part of a cacophony of lost hope and money changing hands, from the poor to the wealthy.

Now I ramble on my computer, without a belief that anyone will ever want to read this. Beside me sits an older man banging on the bar to get some service. Obviously a regular, he now does what I used to do each day, the after work drinks are his reward for a day of labour. The bar is filling up now that happy hour has hit (this was a lie and I don’t know why I wrote it. The casino has no happy hour) and I’m seriously regretting sitting here rather than finding myself a quiet corner in which I could write. The old man has his drinks, not settling for only a beer but adding a shot of whiskey as well, but his drumming on the bar has increased in its percussiveness as he pretends to be the drummer in the band whose music is competing with the ringing of slot machines around me.

I am the odd man out here. Each of these men come in often based on their camaraderie. Many people would accuse me of wanting to be a part of this friendliness because I sat at the bar but the truth is far from that. It is simply a matter of comfort for me to plop my ass upon a stool and take a seat at the bar. This is where I have sat for years, the bartender always being the person I could relate to after eight hours of serving customers at my own job. Well, this is where I did sit for years but it still feels far more comfortable than sitting at a table in the corner, no matter just how desperately I want to be left alone. At least, so far, they have taken the hint to leave me alone. My laptop open and an earpiece slapped on the side of my head have kept their inquisitiveness at bay but I don't expect it to last forever. Sooner or later, one of them will accuse me of working when I shouldn’t be or they will simply ask me what it is that I’m doing. My solace is a short lived one as their increasing inebriation will eventually break open their box of questions and someone will disturb me. At least for the time being, their attention is more focused on the legs of the waitresses walking past us than on me, which is fine.

Perhaps it is the beer I am imbibing but those legs are beginning to attract my attention as well. 

The drumming from the end of the bar wouldn’t be bothering me so much if it were in time with the music but it is way off. It reminds me of an ex-friend of mine who once said that he hated when people would harmonise with whatever music was playing because, to him, you could sing any notes and they would work. Years of choir and music composition back in the day taught me about harmony and creativity and the friend was talking out of his ass but he was too ignorant to know it. That’s how the guy at the end of the bar reminds me of that friend from so many years ago. He is so ignorant of music that he thinks his drumming is somehow in time. It is becoming distracting as he becomes more forceful and is becoming like a jackhammer in my mind.

I hate that this is the place I am comfortable. Unlike these men, I have no woman to go home to after their drinks. I have only my ailing mother and her sore ankles which I will once again be rubbing down with ointment later tonight. I used to sit in this place to forget that I had no one. Now it is only a reminder. 

The other men at the bar have begun to sing along with the music. I have bad drumming at one side of me and off tune singing at the other. Soon I will be forced to put away this computer and resort to gambling again to occupy my mind. I can only ignore this for so long.

The bartender is trying to prepare for the evening shift, stocking the bar and filling the ice wells, which is far more interesting than the conversations which have broken out on either side of me. Their blandness is at least cancelling themselves out.

Eight hours to the east, my girlfriend has picked up her cell phone and has decided that midnight is the best time to tell me about her day. Now I have an actual excuse to put away my computer and focus on something important, far more important than I.

An Unexpected Epiphany

Fifteen or twenty years ago, I used to come here every Monday night. I'd sit right here at the bar after my shift at the restaurant and drink as many beers as I could with a couple of other guys before they closed the bar at midnight. I am still friends with one of them, Facebook being reasonably good at creating opportunities to stay connected with people who would otherwise drift away over the years. That man, Andrew, and I keep our contact up despite him now living in the United States.

But here I sit and who should be beside me but another one of the those men who I had lost track of, now misplacing his name somewhere in my grey matter. This is the first time I have seen him since those days and I was, to say the least, rather surprised to see him. He’s in his eighties now, a frail façade of the man he once was. At first I was glad to see him, his face bringing up many good memories but as I realized what he being here meant I became sad. He has literally been coming here every Monday in the decade and a half since I stopped. He drinks until he can barely walk and then gets in his car and goes home. 

What an existence. What a waste of so many years. Drinking in a bar by himself day after day and going home to an empty house is a life which I, from time to time, have dreamed of. Just enough social interaction that I could not be accused of avoiding the world but never having to deal with people on anything other than a cursory level. My mental illness has made me idolize this man’s existence, something which he would likely say is a choice but is probably something which has been thrust upon him. I’m not sure who I should be more sad for: he and his life of solitude and monotony or me and my streak of green running down my spine as part of me envies his life.

I’d be lying if I didn’t admit that there is an uncomfortably large part of my soul which is awaiting the death of my mother so I can be alone once again. She is a pain to live with. She drags me down on a daily basis. My mom is responsible for a great many of my negative coping mechanisms which have led me down the path I am on and I struggle seeing her do those harmful things she inadvertently taught me so many years ago. I crave what solitude this man of a forgotten name has every day. I am resentful of the things he makes me focus on, no longer able to ignore that dark side of my mind. Self examination is a healthy thing when done in a controlled manner. This is nothing but a trigger and I am facing the consequences as my fingers clack on these keys and I am tempted to sit here and get as drunk as I used to be to try and forget these uncomfortable thoughts.

"Merry" Christmas

 I don’t like Christmas. I don’t use the word hate only because I’m working hard to make hate a thing of my past so I will avoid that...inclination. It’s 4:30 in the morning and I cannot sleep like a child who’s too excited to sleep on Christmas morning. The difference is that I’m not stressing about what’s in my stocking. Instead, I’m stressing about what’s in my mind, having to deal with family and phone calls all day. My family, who keeps me on the periphery of their lives will expect me to drop my life because they decided to honour me with a dash of caring and communication. 

This time of year reminds me just how little I mean to almost everyone in my life. I am the pity uncle, the one who you invite to special occasions due to familial obligations rather than actual caring. In 8 days when it’s my 47th birthday I will once again be reminded just how little I matter. This year, everyone will even have an excuse for treating me that way due to the forced isolation from the COVID pandemic. My birthday will once again be spent alone but this year no one will have to reach out at all if they don’t want to and won’t feel any guilt whatsoever, assuming that they ever do. My birthday will float by like a piece of flotsam, ignored and then forgotten.

This isn’t me overreacting for a change. Instead, this is an expectation I have had to learn to accept over the last 35 years. I will get facebook messages from Anthony, Tricia, Debbie and my sister. My brother may bother to mention it. My nieces and nephew will ignore it, as will the remainder of my friends. My birthday will fly by once again and if I’m lucky, I will spend a portion of it at Starbucks where I will get my free coffee and a chance to be alone and away from my mother who won’t even bother to ask if there’s anything special I want for dinner. 

When I was growing up, the twelve days of Christmas started, for me, on December 24th and lasted until school would return. My birthday will have occurred during the Christmas break ignored by my friends and teachers. Birthday parties were rare, so rare that I remember my 5th birthday as the one that stands out. Other than that, no one has ever made my birthday a special thing. Throughout elementary and secondary school my birthday would pass by without a passing thought for most people in my life.

I hoped that things would change when I was older, especially after I turned 19 so that I could go out and enjoy my birthday. My 19th birthday told me how wrong I was going to be as I was turning legal before all of my friends so no one could go out with me. Now, looking back, I fail to see why my friends didn’t at least want me to buy some alcohol so we could all celebrate at my home but they all forgot it was even a special day for me. So instead I spent my 19th alone with a 6 pack of Coors Light, alone in my room. 

As my 20th neared there was one exception to so many years of being ignored. A couple of girls who used to come into my work invited me out to a New Years Eve party and I went. I was alone, knowing only them but one of them and I spent 15 minutes laying on the cold winter grass outside the house drinking beer and watching the northern lights. That year, my birthday came and went once again but at least my New Years had a happy memory. Little did I know that now, as an adult, December 31st would steal even more of people’s attention away from my birthday. By the time January 3rd came around, people were broke and emotionally spent. There was no time, money or energy left to help me celebrate my day. 

I worked my birthday most years from when I had been 15 to this point and no one at work made an effort either. No birthday cakes, no one suggesting we meet up for an after work drink, nothing. But at least at work I wasn’t alone at home wondering why I was so unimportant to everyone.

I spent my 23rd birthday on a bus, spending 16 hours moving to Calgary to be with Heather. It was exhausting but when I got there at least I knew I wouldn’t be alone for my birthday ever again, but I was wrong. The next year, having moved to northern Alberta for her first teaching job, Heather left Calgary the day before my birthday to avoid traffic. Once again, now in a city away from all of my lifelong friends, I spent my birthday alone, drinking to my self pity and playing a slot machine. That fall I moved back to Langley, now single and even more alone than ever.

It wasn’t until my 30th birthday that things changed a little. My new friend Anthony and a couple others went to the bar to celebrate. We danced, had some fun and I got to let loose for a change. It was like all of the past 25 years had built up to that night and then released. What I didn’t know was that it would be my last big night for my birthday until today. 

41 years now and I have exactly two happy and memorable birthdays and this year will make 42. Again, due to COVID I will be alone or at least I can tell myself it’s because of COVID. All my past experience tells me that I’d be alone whether or not the virus was holding our necks to the ground. 

So you’ll have to excuse me if I don’t find much to be grateful for again this year or reasons to expect a merry Christmas because all this time of year does is remind me that I am destined to be alone.

Pay Attention to Everything They Do

 My brother and I have had a tumultuous relationship for years and my mental illness diagnoses didn’t help matters. We are still trying to have a normal relationship but he pushes back and doesn’t try to understand what I’m going through. About a year ago, we got into an argument and he accused me of blaming him for all of my problems. We don’t talk anymore and barely communicate.

Last night I had a dream where everything came to a head, where I had no choice but to leave his home after an argument. As I walked through the town, I ran into unsavory characters and was eventually forced to defend myself with a knife. In a voice over, it was revealed that I died in prison. (yes, my dream went from first person view to third person)

I know that this was caused by my continuing unease with our relationship but I am at a loss as to how to make things better. My family “supports” me but they don’t really. In most things I am segregated from the communication that goes on. My sister, who is closest to normally communicating with me, sends me the occasional text, usually asking if I can look after her dogs again. The rest of my family has me on the outside, never contacting me. There is even a group text on Facebook including my mother, brother, sister, nieces and nephew but not me. They all chat every day but I was never included.

When you have any sort of illness, one of the things you crave is to be understood, if only a little and people make an effort to do so when that illness is physical. However, it seems to me that when that illness is mental the effort is minimal at best. Maybe that’s because it’s impossible. I don’t really know but an effort in at least trying to communicate would be nice. 

I don’t know. Maybe I'm just tilting at a windmill. Maybe I’m trying to accomplish what cannot be done, at least on my part and I can’t affect how others behave but when you feel alone and your illnesses are telling you to isolate, it would be appreciated if it felt like anyone, and I mean anyone, made an effort other than myself. Perhaps I simply don’t matter that much to them. 

Randy Pausch once gave a piece of advice when it comes to dating. “Ignore everything they say and pay attention to everything they do.” I have applied that to all my relationships and it has become apparent which friendships are real and which are there for convenience only. I don’t want to apply that standard to my family because I am terrified that if I do, I’ll be completely alone marching through a seedy town of loneliness which will eventually kill me.

Rambling thoughts from a suicidal mind.

December 17, 2020
Written while listening to Evermore by Taylor Swift

So I made it out.

Such a small thing but on days like today, at least in my current mindset, this feels huge. I just needed to get out and away from my mother. I love her but 9 months of listening to her has pushed me to the edge some days and after almost biting her head off for nothing this morning told me that today was one of those days. Part of me wants to let loose on her and the other wants to let loose on myself.

In a direct way, it’s not her fault but if you look around the corner at where I come from, maybe it’s more her fault than I want to admit. I know that a huge part of who I became is the direct result of my father leaving the way he did but I’m wondering how much of me is built upon the foundation provided by my mother’s reaction to being left so coldly. I have no doubt that she did the best she could, coping without turning to alcohol or any other immediately self destructive behaviour. But she also turned inside herself,  never letting out the anger that built up, thinking that it was best that her kids not see her break down. 

Now, that’s how I live my life or at least that’s my go to coping mechanism; denial, painful yet simple. My father leaving without saying word one to any of us kids about it, never trying to keep a relationship of any kind with us. He ghosted us, never facing the people he must have known he was going to hurt, including my mother by having split with her via a letter rather than even a phone call. My mother pretending that everything was normal even after she knew he was never coming back. What else was I going to learn but to ignore what was happening to myself in my relationships, to never constructively ask for my needs to be fulfilled. By shoving everything down and ignoring others I guess I never learned to even recognize what those needs were.

And now I’m 46, pushing 47, unable to set boundaries or put my needs on par with those of others. I sacrifice parts of myself in an attempt to receive love from others. I ignore even the basic things like hygiene and eating, literally forgetting that they are important. It isn’t like bulimia or anorexia where the person is in a constant battle with food. I just don’t remember, to the point where I end up with a headache and wonder why. 

This is why it’s so important and even surprising that I stay on my meds, twice a day every day. A handful in the morning and a handful in the evening. I’ve never felt what so many others in my shoes have battled, when their minds are telling them that they just don’t need their meds any more. I feel nothing but empathy for those who struggle to stay on their meds, especially those who are bipolar. It must be incredibly difficult to fight through the high that bipolar brings and remain medicated. I just take my meds like a good little boy, trusting that the doctor who prescribed them knows enough about me to  prescribe the correct pills. 

But I hate my meds all the same. I hate that they make me sleep. I hate that they keep me awake. I hate that they mess with my sex drive. I hate that they keep me from being who I truly am. I hate that they keep me from recognizing who I truly am. I hate the mental fog they create. I hate them almost as much as I hate my father and what my mother taught me.

When Doctors Lose Hope

Doctors aren’t miracle workers. We want them to be and we want, or all too often need, them to be

the source of our hope. Perhaps it’s unfair to put that kind of responsibility upon them but where else

are we supposed to put it. 

I’m lucky enough to have a rheumatologist who actually cares about my wellbeing but today he was

at a loss as to what we should do next. As I am writing this, I am sitting in Starbucks with huge

plaques of psoriasis on both my forearms. I’ve caught the women to either side of me staring at my

arms. My hips are both on fire today, a leftover symptom from when I went outside my comfort zone

and attended a Vancouver Canucks game. Two of my fingers in my right hand are causing me more

trouble than they ever have before. It is clear that my current Taltz regiment is, at the very least,

inadequate and far more likely to be losing its effectiveness all together.

Don’t get me wrong. I know that I am lucky to be living in a country where pharmacare covers the

cost of Taltz in the first place, with each injection costing well over $1500 CDN, and that’s atop the

specialist and general practitioner appointments, as well as the monthly blood tests which are also

covered. However, when all that effort leads to no results it’s difficult to be thankful for very much. 

And perhaps that’s what makes this all so hard, no forward movement. Hell, I don’t think I’m even

holding in one place anymore, instead being dragged backwards no matter how hard I struggle. So

when the doctors are giving up on hope for you it becomes impossible to keep looking forward

because you’re constantly checking over your shoulder for what hellishness is behind you. We will

all face that moment in our lifetime when we have to accept the eventual decline and failure of our

bodies, unless of course something tragic robs you of the ‘opportunity’. I had hoped, in 2012 when I

asked for help, that there was going to be some possibility of forward momentum for the foreseeable

future. That positive outlook lasted at most for two years until I hurt my knee once again and was laid

up, had to stop running and eventually walking.

After that moment, my entire life has been in a backwards direction. I failed my way out of school. I

put back on all my weight. My mental state has been in steady decline, despite the occasional bump

of a good day a couple times a year. My financial situation is about to take a huge turn for the

worse, with my income dropping as much as 40%. I eat and drink because those are the only

reliable things I have in my control which I know will give me an all too short feeling of contentment,

even knowing the incredible guilt I will feel later that day or the next. 

I am alive today not because i fear death but because of what my suicide would do to my mother.

Not even the prospect of finishing and compiling my book is a reason to keep going. Where do I go

from here that isn’t backwards into the mire of loneliness, addiction and utter morbid gluttony?

x

Lies, addiction and choosing to live

One of the near-constant plot threads throughout the series The West Wing is alcohol addiction. There are many episodes where the Chief of Staff's alcoholism is the keystone of everything going on. In one episode in particular, “Bartlet for America”, Chief of Staff Leo McGarry takes a drink for the first time in years but doesn't stop with just one, because alcoholics don't have a drink. They have drinks. And they don't do it in front of other people, they do it alone because they are ashamed and afraid that no one will understand and that they will be seen as weak.

The DVD commentary for this episode was done by series creator and writer Aaron Sorkin and the actor who played the Chief of Staff, John Spencer. Both of these men have dealt with addiction in their lives so it is from experience that they can discuss the shame of the lies that come with trying to hide such a sadly integral part of their lives. Spencer also discusses the incredible amount of freedom that comes with finally telling the truth.

While I did use alcohol as a self medication and I definitely abused it at times in my life I never had problems choosing not to drink the way that an alcoholic does. If I decided I'd had enough, I would just stop even if that meant leaving alcohol in the glass in front of me. And yet I can totally understand what these men are talking about as they discuss the lies which they told to hide their addiction and the freedom that one experiences when they finally are able to tell the truth, without the fear of judgement from the people around them. I spent nearly my entire life lying, trying to protect myself from the illness that was desperately trying to destroy my life not knowing that it was the lies that was allowing that destruction to occur.

I've known for years how important this freedom is to me and how central it is for me in trying to function on a regular basis. Life would be a lot easier for me to deal with if I went back to the lies. I could probably even lie myself into believing I could hold down a job but the appearance of healthiness would be short-lived. It doesn't matter how well you lie to yourself and others, the truth will eventually bite you hard enough to stop you where you stand, often when you least expect it and when it is the most damaging to your life and relationships.

I catch myself lying from time to time, a reaction to a specific moment, a form of puffery subconsciously intended to make myself seem more important or more liked to the person I'm speaking to. I work hard to catch myself when I do this and if possible admit to the person I just lied to that I did it. Only recently did I understand where a part of the impulse comes from.

There are tens of thousands of characters in fiction whom we love and cherish who are known for turning their lives into a series of blown up adventures, exaggerations on what really occurred. The other characters think of them as only telling tall tales and because we all they know they lie, they don't believe them and can see them as charming and endearing. Anyone watching an episode of How I Met Your Mother knows this. The character of Barney Stinson is well known for his ability to manipulate people by exaggerating the truth, especially the opposite sex, into getting what he wants. However, from a third-party point of view, watching it in a  television show may be funny, charming and almost lovable but to the characters inside his life, the reality is he would probably be insufferable, never trusted, and alone if it weren't for the ladies he was able to manipulate into going home with him.

I know that there are people in my life now often uncomfortable with the fact that I no longer lie, as strange as that sounds. Because I tell the truth they are exposed to the thoughts which I deal with on a daily basis, hearing about my illnesses in a blunt unshameful manner, and telling them how I really feel about myself. It hurts me to know that telling such blunt truths around them makes them feel this way. Yet I do it because it's not only the only way for my relationship with them to survive, it's the only way for me to survive. Like an alcoholic, if I was to feed that addiction again I have no idea where I would end up but I do know that I would hurt every single person who cares about me in the process. Strangely, Aaron Sorkin hinted at what that aftermath might look like.

Early on in the series, a secretary who had grown up with an alcoholic father asks the character of Leo what would happen if he took a drink. Leo responded, “I don't know. But probably a nightmare the likes of which both our fathers experienced. And me too.”

My greatest fear isn't how much I may hurt people if I take my life and leave this planet. My greatest fear is how much I could potentially hurt them by finding the courage to stay.

A simple errand

If anyone that I know wins millions in the lottery,  I promise to pay for all my drinks and food when we go out. I will never guilt you for being lucky enough to have the money.  In fact, I can honestly say I'll be happy for you and hope you invest it wisely and remember to refrain from spoiling your children too much.

That said, if you find the charity to help me pay for psychological therapy, I wouldn't be so proud as to turn that down.

A couple days ago, I had to go to the dr for script refills. This is an anxiety producing scenario at the best of times and waiting 45 minutes past my appointment time made things worse, but I got through it.

After that I went to the pharmacy to fill the prescriptions where the pharmacist said she needed to go over my medications. She pulled out a list and began to go through them one by one, knowing nothing of my history, and inform me that I don't have my pain under control,  or me depression under control,  my anxiety under control, my cramping under control. 

I got out of there by the skin of my teeth, a panic attack barely avoided. Last stop was a quick pop into the dollar store, to supplement the pantry with food I can actually afford. Upon putting in my PIN the transaction was rejected. I had forgotten to verify my balance. I quickly looked around and saw just one register open and 5 people in line behind me.

Panic mode engaged.

I fumbled with my cell phone to open the bank's app so I could transfer money. The app wouldn't open.

My breathing got more shallow.

I restarted the app, it still wouldn't work.

I broke out into a cold sweat.

I turned off the wifi on my phone, hoping the wireless data would work better and, thankfully, it did.

My hands were now shaking like a paint mixer.

I closed my eyes and took a feel breath before trying to transfer the money. It did.

I looked up and saw the line of people behind me, annoyed at having to wait, had grown to 8.

I sloppily took gold of the PIN pad and tried again. Thankfully, it went through  and I could hurry from the store, just as a second register was opening.

Luckily, I had my Ativan with me and was able to get into the cool outside air, alone with my thoughts and a chance to slow my breathing.

That was two days ago. This morning I was still shaking so bad I dropped my morning cup of coffee, spilling sweetener and milk all over the kitchen. It's nearly nine o'clock at night and I'm still elevated.

I dont need a pharmacist to tell me I dont have my health, physical or mental, under control. What I need is a way to fix it or at least control it.

Because right now I am as out of control as a kite with a broken string, slave to both the gentle breezes and the irresistible gusts of life and I need to find a way to regain a grasp before things get out of reach.

No Future

What next?

Other people with BPD often ask me what I think of DBT therapy and I hesitate to answer the question. While I did learn some skills on how to cope, i found the basic premise to be at conflict with itself. I was asked to believe it would work even though I had no reason to.

I was asked to take it on faith. I was asked to hope without reason.

Ever since I left religion I have had no ability to do that. I need evidence that something is true. I need facts. I need something upon which I can bootstrap the rest of my thoughts and ideas. Without it, I am a mind floating through the air like a helium filled balloon,  subject to the gusts of my emotions. Often gentle, but sometimes gale-force, they push my psyche to and fro, up and down. There is a narrow band of usefulness in which it must remain or bad things happen. If it goes too high, the pressure builds until it pops from the inside. If it slows and drags on the ground, it may come to a stand still, or slowly erode the plastic until a small hole forms, allowing the helium to slowly leak out leaving it lifeless on the concrete. 

But even if its within that narrow band of usefulness,  there are obstacles a plenty which could snag it or do it damage. Trees could stop it in its tracks and although it is full and healthy,  it will never move again. There may even be mischievous little boys with BB guns, trying actively to bring it down to their level.

Right now, I am low, on the ground. Another potential path to the open sky has been closed and a reason for hope seems further away than ever.

I don't want a whole lot in life. I don't want tonnes of money. I don't want fame or glory. I'm at the point where I don't want the things that most people have. A car, a family, a job, a hobby.

I'd just like to get up each day and see the morning as a good thing. It doesn’t even have to be for me. If I could see a positive outlook for humanity, I could find a way to help fight for it but I don't. 

Global climate change is going to alter the world in more ways than we can imagine. In America,  they are caging children, refusing to pass laws which keep guns out of violent people's hands, taking money away from special needs kids to build more bombs, taking health care away from millions to build a pointless wall.

Even here in Canada, it is getting bad. Right wing, religious extremists are trying to force their racism upon us all and succeeding. We are choosing energy and money over food and clean water. We are protecting gangsters and caging people for asking why.

Society is breaking down and there's nothing I can do about it. A friend once pointed out that i can't solve all the world's problems, and I think I'm about ready to stop trying.

Live in the now. Enjoy the present.  Seize the day. Make now always the most important time because now will never come again.

But I don’t think I can. With no reason to believe that tomorrow will be better, as a conscious world or a selfish me, I see no reason for hope. All I have left is more pills, more numbness, more darkness, more aloneness. At what point is it right to just pull the plug? How deep and long does the coma of my life have to be before pity should be acted upon?

Maybe it's best that I don’t know the answer to that question. Maybe the answer would propel me to act. I don’t know but the limbo I'm in today is grating my skin, wearing away layer after layer.

The gas is beginning to escape.

Another Day in Paradise

March 24, 2016

6:30am

I am an introvert with isolationist tendencies and darkness is a friend that gives me hugs whenever I need one the most. At home, I never open my curtains unless I have to and, if I had my way I’d open the door only when the pizza deliverer brought my latest attempt to quell my pain. I am also seldom awake at this time of the day unless I have been awake all night. So, the fact that it’s so bright in here at 6:30 in the morning with not a window to be found is unsettling, to say the least. Neither my body, nor my mind are, accustomed to this and I am struggling to make sense of my surroundings. The word that comes to mind is “antiseptic”, which I suppose is not a negative thing, especially as far as the staff is concerned I suppose. That said, being up so early has made me wish I could see the sunrise this morning. At the very least, it may give me a feeling of change, rebirth, of hope.

They took away all of my clothes when I was admitted to the hospital. A pair of light pants was courteously, and laughably, offered but their meager size rendered them useless to me. So, I am wearing two hospital gowns; one with the untied opening to the back and the other with the opening to the front, like an untied kimono. They are far too short and I seem to be constantly threatening to flash anyone who walks past, even when I am lying on my gurney with a blanket over me. It’s the closest I’ve gotten to wearing the kilt I’ve wanted to try on since I first saw a video of the highland games.

As uncomfortable as my outfit is making me, it’s the socks which are the most frustrating. I am not a sock person and footwear of some sort is mandatory here. I like my feet to be cold and these things are like little ovens for my toes, so much so that my piggies are beginning to resemble bbq pulled pork, I’m guessing. Sure, they aren’t cheap and even have a rubberized non-slip tread complete with happy faces but they are making me quite uncomfortable.

I’ve been up for three hours now and since no other patients are awake, the nurse on duty has allowed me to sit in one of the interview rooms to write this. I am very appreciative to her for the slight rule break. It’ gives me a small sense of normalcy, something I didn’t realize I was missing until right this second. Sitting in an uncomfortable, cheap office chair from 30 years ago is a comfort I never thought I’d appreciate but considering the pain I deal with every day, I suppose I should have gotten to this point before now.

I don’t think that most people understand the irritating and embarrassing feelings that psoriasis sufferers deal with on a daily basis, the flakes, the crusty skin itch and the constant pain of arthritis. From a secondary point of view, it’s hard to ignore the blatantly obvious flakes of skin but I have to wonder how many actually understand the embarrassment which accompanies them. Of course, those flakes come from plaques which often cover large percentages of our bodies turning our skin into, at the best times, an itchy hive-like scab and at the worst of times are akin to setting our skin aflame. What’s hidden from everyone is the arthritis which often comes with the disease, as it has with me, and has been a literal pain in my ass since my early twenties.

Psoriatic skin flakes get into and onto everything. It doesn’t matter how often you vacuum, how often you change the sheets or how often you clean your entire home, there will always be flakes you missed. As a child, the flakes that my mother would leave on the floor, especially in my parent’s bedroom fascinated me. I would look for the big ones, often the size of dimes, and study them. They were light yet thick. They were almost crispy, the way they would crack in half when I applied pressure to their outside edges. Some kids pick their scabs and are fascinated in this way. I had an almost unending supply to make me wonder about the way the skin worked, growing and healing. It wasn’t until my later teens that the flakes began to show up on me. Like dandruff, it was coming off my scalp and suddenly high school became a battle against my own body. How many 17 year olds do you know who carried around a lint roller in their backpacks? At choir competitions, I would lend it out before just before we performed ensuring that I was the last to use it because if I had used it first, by the time I got it back only a couple minutes later I would need to use it again.

I found myself near constantly brushing my shoulders, pulling at my shirts and letting them pop pack to my shape in hopes of forcing the flakes to release from the fabric. The battle of the snowy shoulders is one that you can never win, so at some point you just accept it and do the best you can. You begin to avoid dark and solid coloured shirts. You accept that others are going to see the flakes and immediately judge you with rather pity or disgust. When I turned 19 and began going to dance clubs, my friend pulled me aside one night and pointed out my shoulders. They were alight with little star-like sparkles, my psoriasis flakes glowing in the black light that was popular back then. I was horrified because even in the near complete darkness of cigarette smoke filled clubs, my shoulders were shouting “I’m a gross slob!” to anyone I would meet. Women get stared their chests stared at and to a degree I understood how they felt because my shoulders were getting stared at. The difference is that one attracts members of the opposite sex while the other repulses them.

As bad as my scalp psoriasis was, my cousin had it far worse that the same age. At twelve years old her head was covered in a layer half an inch thick over a four to six inch diameter area. Her early teen life was an exercise in finding equilibrium between the pressures of burgeoning womanhood and trying desperately to not have her entire school know her secret. She was however lucky in that it remained only on her scalp and was able to find medication which would control it enough to keep it at bay until her body grew out of it. I was not so lucky.

Eventually, parts of my body other than my scalp had breakouts, especially my back, stomach, groin and shins. I began having to tuck in my shirts or avoiding black pants as flakes began to appear on my hips if I was wearing my shirt loose. If I had been wearing my shirt tucked in to contain them, the minute I untucked it a blizzard would appear and it no longer mattered what I was wearing because there were so many flakes that I would leave a patch on the floor below me. What had once fascinated me as a kid exploring my parents’ bedroom had become an embarrassment so bad that I refrained from going to pools, waterslides or the beach. I was terrified of what strangers thought of me already due to my anxiety but now I was actively turning down invitations out with friends because I was worried what they would think of me.

My bedroom was becoming uncontrollably dusty. Entering it was like going in search of the home movies of your childhood, packed away years ago. On them were the images of a carefree childhood, now so distant that you can’t recall the emotions which made you smile at twenty four frames per second. Replacing them was a constant reminder that I was different, judged, and, as far as I was concerned, unlovable. While my friends were having relationships, I was the guy sitting in the corner longing to be them but certain that I could never be. Looking back now I can see that women were interested in me but I couldn’t conceive of that being real so even when women threw themselves at me, I didn’t even respond. The girl giving me a picture of her with her phone number on the back was just being nice. The roommate climbing into bed with me one night was just being playful, not wanting me to stroke her body. The girl in the bar standing two inches from me with her hand on my chest and dragging her fingers across my skin was being strange.

I had gotten used to the assumption that I was different than everyone else. It isn’t that this feeling was without merit for there were times when people would ridicule me for the strange patch of skin on my forearms or my shins. I also didn’t blame them for feeling this way. I can easily understand how a bad patch, or plaque, would look like a communicable disease. People with eczema or shingles are treated in a similar, despite general knowledge of these diseases in the public being far more prevalent. We tend to fear of what we don’t understand. This evolved response has protected us through the millennia but I have seen it used far too often in today’s society, to justify prejudice, bigotry and willful ignorance. The error I made was assuming that because one percent of people were judging me like that, so was everyone else.

One day at work about ten years ago, while waiting on a table a child of about eight years old pointed at the large plaque that had recently formed on my forearm and asked me what was wrong with it. His mother immediately scolded him for being so rude. Had I left the situation like that, the boy would have learned the lesson that his innocent curiosity was something to be curtailed, that trying to understand the world around him is not something to be embraced and encouraged. Neil DeGrasse Tyson says that “We spend the first year of a child's life teaching it to walk and talk and the rest of its life to shut up and sit down. There’s something wrong there.”

To the parent’s chagrin, I corrected them, getting down on my knees to be at his level so as to minimize the trepidation on the child’s part. I softly explained that I didn’t mind being asked and what the sore on my arm was, why he couldn’t catch it and asked if he had any other questions about it. I find it very important to speak to children about these types of things at their eye level while talking to them as you would an adult. You don’t have to use big words but there’s no point in dumbing it down either. It’s surprising how many “mature” things you can talk to them about without upsetting or overwhelming them. Unfortunately, the parents didn’t agree with me and lodged a complaint for contradicting them to their child. I hope that boy learned something from that interaction before his parents had the chance to drill it out of him.

One thing I hadn’t counted on when the plaques first started to appear was how uncomfortable they could be. At their best, they are best described as a slightly sensitive sunburn; mildly itchy and painful at the same time. At worst, they are like poison ivy rash covered in bee stings. And the things which can turn them from mild to hellish are varied and seldom predictable. What does not affect them for 364 days will send them into a firestorm on that last day of the year. Eating a tomato can do it. Being around a smoker. The wrong soap can set it off. A single stressful moment at work or a bad night’s sleep. It’s virtually impossible to nail down what single thing triggered the inflammation but it is not ambiguous when a flare-up occurs. I have had nights where I lay in bed desperate to not scratch, only to find myself unconsciously doing so to relieve the itch and then discovering that my sheets and legs are covered in blood in the morning. I once had a friend tell me that my scratching was making her uncomfortable because I the sounds I would make as I relieved the itch were like “someone is sucking on your dick”.

Trying over the counter creams were a laughable attempt at stopping the plaques from becoming so irritated often making things worse rather than being helpful. The few topical choices which would work were by prescription only, difficult for two reasons. Firstly, I could not afford the steroid sprays which worked the best, over a hundred dollars for a two week supply for only my forearms and scalp, and second because getting them would entail me paying for my medical insurance and actually going to a doctor. I hadn’t been to a doctor since I cut my hand after falling on and shattering a drinking glass when I was 13, requiring emergency surgery, seventy stitches and two nights stay in the hospital. Perhaps the only thing worse than my anxiety triggers of women was when I was forced to deal with doctors and dentists. It didn’t matter that they were professionals who had surely seen far worse. Opening my mouth wide or disrobing in any manner was to be avoided at all costs, lest the other person in the room voice their displeasure with my appearance.

As a result, the psoriasis plaques spread over more and more of my skin, eventually beginning to form on the backs of my hands, so long sleeve shirts no longer covered them. The spots on my shins expanded from the tops of my feet to my high on my thighs, wrapping around to the backs of my legs and knees, a particularly painful and itch place to have them. They also began to show up on my face, neck, eye lids and ears. The once small spot in my groin turned into a patch which ram from the top of my bum crack all the way down and up again, reaching 3 inches above my genitals. The one half centimetre patch on the tip of my penis was like the pièce de résistance. At one point in my early twenties, I had begun a sexual relationship with a girl I had known since I was 14. She’d had a crush on me since we were that age so I was able to accept that she would consider a physical relationship. Unfortunately, her claim of a latex allergy meant that our dalliances were done without protection, and the patch of psoriasis made sex incredibly painful at times. One night it was even so painful, as if there was an Exacto knife and a vat of battery acid in her vagina, that I had to fake orgasm so that I could end it.  

If I had been able to keep the flakes at bay and hide the plaques under clothing I would, at the very least, be far more comfortable going out in public but eventually the patches began appearing on the backs of my hands, my now quite bald head and even on my face. People had begun to stare at me, not like a man stares at a woman in yoga pants or a dog makes eyes at a piece of pizza from across the room. They were staring in wonder, fear and in some cases, revulsion. When I had finally convinced Chrissy to go out with me, after years of trying, it turned out to be a one date and gone situation. I found out through a mutual friend a couple years later that her friends had convinced her that I wasn’t ”pretty” enough for her, confirming what I had always feared. I was being judged by women, including the ones who were very attracted to me, the way I had always feared except that now it wasn’t my weight or my looks. My skin and immune system had conspired to keep me single and although it was something that that I had always felt I deserved, to that point I had still had hope that I could change it. That day I acquiesced. I was going to be alone. Forever.