Time Out

I am avoiding social media….

I need some time off… and if anyone hasn’t noticed some of my posts/statuses/comments lately… although I usually end up deleting those… they have not been very upbeat or put there with the preferred set of mind… or from the “man I want to be”….

Therefore I am just going to concentrate on other things… such various writing projects I have been working on for years…. some website projects…. both new and old…. and my music… That is…. when my… (mostly mental) health allows….

….so YES, I am on a “time out”…

I’m still around though in case you need to shoot me a message or anything like that…. and I may post here on this website…. or on my music website Behind the Moon…. or even share my new projects (with an announcement on this website)

A Brain Working Overtime

He sits down… opens up a blank document and starts to form the first sentence in his head… He starts writing… he writes… and he writes… It goes on for about an hour… maybe more…
but writing about it won’t make it go away… Sheer determination won’t make it go away either…. any more than ignoring it will… or trying to hide from it…

…so he deletes it… and starts again…

…a few times….

The Super Hero is feeling lost…

It’s day 16 from the surgery… and he’s not eating yet… Tube… not up to the same rate as before… weight is dropping accordingly… (not of any concern yet though)

He tries to put it into some kind of realistic perspective… This is what you want, right? … Yes I think so… You “think so”? No… I know so…. Are you sure? – Uhm…. no…

That’s why…. right? You’re still not sure….

Of course he’s not sure… this is ‘normal’ to him now… and his ‘normal’ is safe… He’s used to it now… well most of the time he is…

Again… like so many times before… she has a hold of him again… or is it the other way around? Was that guy at the hospital right maybe?

He know he has done some pretty messed up things in the past…. He doesn’t need anyone to remind him…. or to tell him that…. especially someone who is supposed to help him… a medical professional…. It’s enough that people… normal people…. make a mockery out of people like him… and he’s yet again reminded of ‘it’…. He tries hard to keep his cool…but can not be silent… he speaks from his heart… from his soul… but the anger boils within…

If only we could go back nine years and trade places with me… you would feel it too…

No! be thankful it’s not possible… be thankful for not ever having those feelings… but please do not judge… simply because you don’t know what it’s like…

I’ve made attempts to write about it in the past…. I have written about it but without explaining … leaving out the details…. leaving out the whys… the hows….

Only a few people know…. and only a few people need to know…

—-

I don’t even know if any of this makes any kind of sense to anyone who doesn’t have the full story… and right now I really shouldn’t care…

I am still working hard to keep my cool…. Most of the time I succeed…. at least that is what I try to let people see… the calm and cool me… but well I did kind of lose it for a minute or two a few days ago …which btw I’m told… thankfully…. I’m not the first person who does that after a surgery like this… and ok…. I’m over that now… shit happens and all that… right?

But I do have another problem or an issue I need to solve… and no matter how hard I concentrate on ‘doing it right’… my cool flies off and leaves me in an out-of-control mode and my head filled with memories… the kind I don’t want to remember…. Shortness of breath (which btw is not exactly a good thing when you just had your lung collapsed and reinflated) raising heartbeat and shivering ….

Overcoming memories of terrifying events from your past…. Some of you who read this may be thinking something like… He can go and have a major surgery like this and he’s letting childhood memories upset him! …well duh! If only it was that simple…. or…. Maybe it is that simple…

I believe I wrote a little bit about this
back in February after having one of my moments and refusing to go to the dentist… Yeah I didn’t say it in that post back then… but that was what inspired me to write it in the first place… fear of going to the dentist… In fact it’s not just dentists…. more like everybody and everything where I know strangers will be touching my body… doctors, nurses… etc… but this especially goes for anything that has to do with my mouth… and each time… it brings up memories… very unwanted memories…. and the faces of the strangers change… the surroundings change… the air… the voices…. and I become a child… a child who is scared to death…. a child being tortured by his mentally ill…. delusional mother…

These reactions are not intentional… and right now it’s preventing me to from being able to eat again…. My brain is working overtime to keep me out of danger… away from trauma… and I feel the more I try to make it stop… the stronger it gets… For now… even dealing with it doesn’t make it stop… or go away…

Feelings – Random Thoughts

Awkward – Alone – Emotional

He doesn’t know how to be him

He feels he’s on the outside… looking into a window… as he does when he’s a part of a crowd… He wants to take part… but he can’t…

He doesn’t know how to do that…

He feels they care… like they know he’s standing there… but wait for him to take the step… to come on inside and connect with them…

He doesn’t feel what they say he is…

He is just one man trying to do his best to survive… trying not to break down from the thoughts of his own mind… trying not to crumble by the pictures that run through the back of his head…

He doesn’t know how to stop that from happening… he doesn’t know how to reach out to someone else…

He misses what he had… and just all of a sudden it came to an end… vague explanation… He doesn’t doubt them… but it was so sudden… and he can’t but think it was something he said… or did…

But it’s always his first thought…

Something he did…. His fault

It doesn’t matter though…. oh yes it does… but he wants to understand… and he wants it not to matter… but it does… and it cannot be replaced…

He is alone…. looking in… He knows they can see him standing there… but they all run by…

All he wants is for someone to notice …a chance to be him… a chance to let all the emotions out, the frustrations, the pain, the anger…. and not have to pretend to be who they think he is…

Under re-construction

yep it’s that strange guy that never really writes anything on here anymore …but now needing attention… and whining… sorry in advance for the long and incoherent ramble…

I am in a bad place mentally at the moment so I’ve been kind of avoiding Facebook as much as I can… but on top of that and the usual discomfort-ness… mental and/or not… I’ve been having tubie problems and stoma problems… and it hurts like a bitch.. no worries though it’s being treated the best way it can be… and it’s making me very cranky… which again makes me want to stay out of people’s way or even crawl into a hole and stay there alone…

I had a doc appt this morning… can’t remember half of what went on in there… but I have a few things lined up for me in the fall… that is if my liver decides to behave… so far so good and blood tests didn’t look to bad… but it’s something they want to keep a close eye on for a bit before deciding anything else… First fun day will be endoscopy of the esophagus …and then again depending on the endoscopy results and my organs (especially Mr Liver) – first step – esophageal dilation… but I may also need some re-constructional work done temporary or not… or whatever … there that poor doc lost my attention….

I know however that there is also a plan on more re-constructional work to be done of the back of my throat and neck

and well… the fun isn’t over… but my dentist wants most of my top teeth out… and yep more re-constructing there as well…

I feel like an old building that is falling apart…

Right now I just want to forget all of that shit… I want “it” to leave me alone for bit… but at the same time I want to be able to eat my cooking or have a hot dog or a pizza with my wife… even a cup of coffee… but then again… even if I go through with all of what needs to be done for me… there is no real guarantee of me being able to do that…

I know I will probably not get very old… with my physical dysfunctions playing the biggest part… – or if I do get old – I will end up with dementia and Alzheimer’s

But there is so much I want to do… yes eating normally is one of them

It may seem silly but I’ve been trying to write… my “story” ….memoir… or something like that… I randomly write about a moment… and I find myself drifting back and forth in time… A little bit here and a little bit there… but my brain won’t make it into a coherent sentence or paragraph… and I am scared I won’t live long enough to be able to finish that…
…and btw I really want a cigarette at the moment…. haven’t had one since May sometime I think…. not going to though… but still.. it’s not helping with my cranky-ness…

Happy Birthday Mother

Dear Mother

Hey it’s me… your son… the one you were supposed to protect from harm and give love to… remember me? I remember you…

I remember when you tied me up and showed food down my throat… sometimes it wasn’t even supposed to be eaten… or something so hot that my mouth and my throat would hurt for days… Sometimes my tummy would hurt so much I almost couldn’t move…

I remember when you woke me up in the middle of the night…. screaming at me… telling me I was lazy for sleeping… and you would push me down the stairs… I still have occasional pain in my right foot… and when I do I’m reminded of you… but I’ve learned to leave out the delusions you planted in my head… your delusions… They are not mine anymore… maybe they never really were… but instead just something that your special ability to convince people you were always right that made me believe you for so long… I just didn’t know any better…

Yes, I remember your words and for a long time… for way too long …when I left home for the first time I did what you told me to do… and for a long time after that…. I listened to you for way too long… and I didn’t go away even if I could… I came back… I believed you for way too long… or maybe I was just too afraid to find out if you were right or wrong…

I remember being angry at you for leaving me… you made me believe I had to take care of the “it”… When Karen left… you made sure I remembered it was my fault… and then…the way you left… it made me even more convinced…

Now… almost 23 years later… I know you weren’t well… you weren’t yourself… I also know I wasn’t really well either… I know all of “it” was your illness… blinding you… preventing you from being a mom…

I remember times where you and I had together… times where you didn’t feel a need to hurt me in anyway… I remember being able to sit on your lap or beside you and you would put your arms around me and tell me you cared about me… that you loved me… and even though some of those occasions there were people around… I know you meant it…

On your good days you did show me love… You told me you cared… I remember you telling me you didn’t want me to be taken away from you… that you never wanted me to leave because if I did you would die… and you cried and you told me you loved me… I believe… or at least I want to believe you had some kind of conscience… some kind of awareness of what you were doing… but fear kept you from doing anything about it… Maybe your own childhood just made you too ashamed of admitting your illness…

I remember you telling me at 17… When I left for school to don’t let anyone know about what’s going on inside my brain…. “They will lock you up” …you said… and you told me they would fill me up with medicine that would make me drool all over myself and make me feel like a zombie…

Well yes… I’ve been “locked up”… and a few times actually…. but they’ve let me out again…. every single time… and honestly… it isn’t as bad as you made it out to be… I don’t know if you ever had this experience or not… I don’t know if you were ever in a mental hospital… and maybe… this was probably the reality once…

But let me tell you something… you and I may have the same illness… not all the same symptoms or delusions though… but I would rather die than make my children go through what you put me through…

You told me once I wasn’t allowed to take my own life as it would only make ‘it’ more powerful… and within someone else who wasn’t as ‘lucky’ as I was… well I didn’t care about that when I upgraded your methods… silence and burn… in an attempt to stop my pain….

I’m not angry at you though… not really… not anymore… well… sometimes maybe… but when I am… it only makes my thoughts go places I don’t want to go… so I try not to…

I may not be the most perfect father in the world and maybe… and for a while didn’t realize I had this illness… but I did have someone in my life that helped me realize I needed help… someone who loved me with all my flaws and cared enough to do everything in her power to get help for me… To fight my brain in order to get my heart back…

I am sorry you didn’t have that….

I know my fight isn’t over… I know there will be more battles… but I can’t afford to let you hold me back anymore…

your son

PS. Happy birthday mother… and rest in peace…

C.G.Arsante (06.25.1940 – 08.16.1992)

The Child

You have memories of a child…  you know now that child was you… you have felt his pain and you carry the marks on your body… on the outside and the inside…  Some didn’t leave a mark on your body but are instead engraved on your mind…  You’ve spent years in therapy…. seen at least a dozen or two of medical professionals throughout the years… to help you put the pieces of you together… and to learn make sense of yourself… or how to survive the crippling emotions and memories from taking you under….

You’ve learned a great deal about yourself… there’s no doubt about that… and when everything seems hopeless you’ve kept on going no matter what… even at times without really knowing how or why…

Sometimes your mind doesn’t play along with what you’ve learned… and you try to hide what’s in there… Sometimes it’s intentional… sometimes you don’t really know what’s hiding in there…. or you can’t use words or any other method to get it out of there… and you’re back to the past… all alone… with her….

You know she doesn’t hate you… not really… at least it doesn’t always feel like she does…  You know she is afraid…  and there are times when you can see that she’s just as afraid as you are… She believes what she tells you is true and you as a child can’t do anything else than to believe her too…  because you are too scared of “it”…

When you have been beaten and tortured for a while this is just yet another way to hurt you to punish you for just existing…  When “it” has been a part of your existence…forever… you don’t even realize its wrong… not as that child…. “It” is your existence…

At thirteen you only exist because you feel your body…. your heart is still beating and your lounges still draw oxygen… but without pain… you are afraid now….  When you need to go out into the world… you put on a mask… a front…. a version of you for others to see… a fake smile, a fake happiness ….even fake love and compassion when needed…  but on the inside you just don’t care…

You are still always afraid to slip up and say the “wrong thing”…. or that someone will see behind your cloths… or touch you in the wrong way and you might lose control and they would be able to read your pain from your expression…. or you would cry out in pain….  spontaneous reactions of what you were feeling on the inside….

You have the chance at seventeen to escape… but you don’t… The “it” has distorted your mind… you don’t know that at seventeen… but you do “what you have to do” and you don’t talk to anyone about it…  and it never occurs to you to escape… and never go back…  All because you believe you can’t exist without pain… you need it to survive… you need it so others can survive…

She is gone now… and although in your confusion you kept “it” going for many years afterwards… too many years….  or is she really gone?  Her body may be gone… but you know her mind sits in the corner of your mind…   Most days you don’t notice her sitting there… but when you do you feel you are not safe… It’s not that you are afraid of her coming to life and hurt you… you are afraid of your own mind… and what it is capable of…. what it has shown in the past…

Sometimes you go back there without realizing it….  and you can feel the child… the pain, the terror and his acceptance…  you can feel how he accepts it in spite of the pain…   but yet at the same time you feel you need to rescue that child…  to hold him… and to show him real love…    take him where there is no pain and no fear…   but you realize there is no place without pain or fear…  not really…  All you can do is to connect with the child… have him share his strength to survive with you…. Join forces… and together you can do anything…

Input – Output

We all have to do it… just some of us do it a bit differently than others… This is a post about eating or getting nourishment so you won’t starve to death …and returning the extras or what you don’t use any more out of the body… better known as pooping…. or what in my family is often referred to as the input and output of the human body…

My wife and I sometimes have the strangest conversation about this subject BTW… and we use strange/weird words or language to express us on the subject….  A lot of the time we think we are very funny, laughing and giggling like school girls…  we know our place though and don’t do it everywhere…   Unfortunately I can’t really give you any good examples of the words we use as they don’t really translate that good into English… but if something pops in to mind… I’ll try to include it…

I realize that not everyone feel comfortable when that particular subject… poop…is brought up and may probably find it quite disgusting or gross even…   If you are one of those people that are easily grossed out by a little poop talk consider this a warning and don’t go any further with this reading….

When I met my wife over 30 years ago… and shortly after that most of her brothers and sisters but she is one of 14 siblings. I had already met her little brother Chris.  He, like the rest of his brothers and sisters, was one of those people who always had the need to get people laughing… Some people may have found his jokes gross or even childish as they were often about stuff we all do but never quite talk about all that too much… like burping, pooping or farting…   I admit that I had a hard time adjusting to this sense of humor and was quite embarrassed when Chris started off especially when we were among other people… but I did sort of play along maybe just to keep my cool as I was desperately trying to fit in to the social side of things at that time…  but mostly just by laughing or… at least… pretending it was funny…

As a child I was brought up to stay silent about everything that had to do with the subject (well most subjects actually) …that is if you can call it upbringing …being punished physically and/or emotionally to say or do the wrong thing…  Anyway… to me this subject was kind of off limits and really it stayed that way for a long time…  maybe too long…  except maybe when Chris was around… and then for the humor side of it only…

I say too long because since that particular subject… my poop… was a sign that probably I should have taken more seriously…  I was however more concerned about keeping it a secret but also not having to deal with that subject with a stranger …a doctor… but I was also terrified of doctors of any kind… still am in many ways…

I have had problems with my digestive system as long as I remember… I know some of it may very well be caused by my mother who had pleasure of torturing me in many different ways…  making me eat all sorts of things that were not meant for eating or starving me by not giving me anything for days… I remember waking up in the middle of the night having to run to the bathroom with diarrhea and even not being able to make it… I remember the most painful constipation lasting for quite some time…  and having to deal with horrendous physical injury for months (even years) from the age of nine….consequences from being anally raped by a grown man….  and I am leaving out more that happened… things that were done to me…

It wasn’t really until 2001 or maybe 2002 that I couldn’t stay away from going to a doctor …and then at first it was a psychiatrist…. I wasn’t eating enough and I couldn’t give any logical explanation for it…   Yes I did have lots of issues with food… I didn’t want it in my mouth… For one… it triggered memories of events I didn’t want to remember…. and at times…when I felt ashamed and/or hated myself…. I didn’t feel I deserved it and what I didn’t tell people… it was painful once it was in my body… especially if it was left there but if I ended up eating I felt I had to throw it up as soon as I could….   that was to me at the time a lot less painful… and I was pooping blood… I had either diarrhea or couldn’t go for days….

Around that time I was very thin… dangerously thin … malnourished and weak… was dehydrated a lot…. I was also very sick mentally… but being an expert of acting as everything was fine I was able to keep a lot of what was going on inside of me a secret… not all though…    I don’t have any memory of it…but my wife told me later that in those years I talked about food being spoiled or I thought I was being poisoned… or about the food “eating me from the inside out”…  However that was taken as just another excuse for me to justify my self-destructive behaviors…

I was diagnosed having Anorexia (purging type) and was getting professional help according to that diagnosis… I was told that I would get permanent organ damage if I’d continue to do this to myself… and there were even signs that it might already have happened…  That gave me a bit of a scare so I wanted to at least try…

Mentally I did make some progress and even though I really wanted to change things around and try to eat properly… I was not ready to come out with my “pain and poop” problems… I couldn’t think of the idea having to talk about that to anyone…   I started eating…. baby steps …it went alright at first… but I was nauseous all the time… and I was in pain… felt bloated and as if my stomach was going to burst anytime I ate something…. Then after a while I couldn’t keep the food down… and it came up no matter how hard I tried to keep it in there…  Of course my doctors thought I had just fallen back to my old habits and was having a relapse in my attempt to recovery…  This turned out to be the first step for me to talk about my physical aspect of things… I told them I couldn’t keep the food down… I tried to explain what it felt like but no they didn’t believe me… not at first… and I really do understand why….

This is when I got my first tube… an NG tube that went through my nose down to my stomach…  That BTW was horrible time… That tube brought up many painful memories from my childhood…. The whole time it was in was like an endless flashback or being exposed to triggers constantly for weeks… I can’t for the life of me remember how long I had that tube… it felt like months… but I ended up throwing it up a few times… and that was not very pleasant thing to do and moments that I don’t really want to remember…

But anyway, when the docs I was seeing finally got what the deal was with me and NG tubes he wanted me to have a surgically inserted g-tube…  a tube that goes through my abdominal wall straight into my stomach…. and the ‘fun’ went on… more problems…  the ensures came up, my stomach couldn’t handle it…   and another type of tube… that would bypass my stomach …was placed… a j-tube…   That one worked for a bit… without too many problems but then my small intestine started to rebel and started going backwards among other strange things…. and finally ….what it seemed like them just shutting down…. more visits to the hospital…  and also somewhere in the middle of all this I was diagnosed with gastroparesis… severely ulcerated stomach and some more I can’t really name… I had to have an operation where large portion of my stomach and parts of my small intestine were removed…   I was still severely malnourished and underweight. In May 2004 they gave up on tube feedings and I was put on TPN or Total Parenteral Nutrition but with that I was given nutrition straight into my blood stream…  Like with the g/j tube it went well at first… even better than with the tubes as I was feeling much better not only physically but mentally as well….  I had to stop that when my already weak organs started rebelling…. and I was back on tube feedings and after a while I was also eating orally along with the tube… This was July/August 2004…

I had a hospital bed reserved in mid-August for a couple of test and procedures, colonoscopy, endoscopy, CT scan and more… but my body couldn’t wait that long…  I woke up one beautiful August morning in so much pain… Somehow I got out of bed but I could hardly stand or walk…  and I was sweating like hell… but still shivering and feeling cold at the same time… My wife called the hospital and they told her to bring me in right away….

That’s how I lost my colon, anus and rectum…. and gained a new “output” hole, my ostomy…   I can say ever since I was nine I hated the “output” hole I got at birth…   There really isn’t much more to say about that one other than that I don’t miss it one little bit… and I’m quite happy with my Ken/Barbie-butt.    Now what is that?… you might ask…  Well that is what you get when your butt is sewed up (no butt hole) and well like a Ken or Barbie doll though I must admit mine is not nearly as pretty as Barbie’s or Ken’s butts… however not nearly as bad as it was when it first came into existence…. but I have a feeling that when they got theirs it didn’t hurt as much when I got mine….  I won’t complain though…. Recovering from a major surgery is never fun and takes time and patients… and for most of us it won’t last forever…

As much as I love my stoma I would be lying if I said that having one is a dance in the woods… though for me, compared to my old butt hole it feels like that sometimes… Occasionally I’ve had to relay on my wife helping me to take care of things… especially during periods of severe depression or when symptoms of the schizophrenia get bad… For me the hardest part especially at first was to take good care of it…  I wasn’t exactly taking care of the rest of myself at the time either so there is no surprise that I had quite some problems with my skin around my stoma…  I had/have multiple scars that almost cover my whole torso including the area around the stoma so getting the bag to stick was quite a challenge… but with good help and patients it got easier….  I do get occasional “run-away” though but that’s just one of those things that happen…

Embarrassing maybe…. if it happens out there in the world or out of the safety of your home…   but no real harm done …except if you run into a prude who can’t respect diversity of human life… just remember it’s them who have a problem not you!

Another thing with leaks… For me… waking up in a puddle of poop is also one of the things my wife and I have to deal with…  We both like to cuddle so unless we would give that up (difficult when you do it while you’re sleeping) Sunna can’t escape this one…  Maybe unfortunately for her, I move around a lot while I sleep… something that I have always done I guess and I can’t really do much about it… but hey I used to sleep walk so maybe I will slow down once I get older…   I have woken up lying flat on my tummy with the bag squished under me… sometimes with poop all over the place… sometimes not…  It’s just one of those things and something you deal with when it happens….

My wife’s family has this thing about coming together and eat… where each family brings some food and share with the others….  It’s something they do very regularly and one of those things where I have had to be the odd one who doesn’t eat much or at all…   but even though my stomach can now mostly tolerate food at least in small doses…

I’ve written about some of this before or at least mentioned it a few times but I’ve had difficulty swallowing for a while… causing food to get stuck in my throat, or my esophagus or even going up, out through my nose or down my windpipe…   so I am still relying on tube feedings…. and may have to do that for the rest of my life…. I really don’t think too much of it… I can’t say that I have ever really enjoyed eating and if anything it has really been more of heartache than anything else for me…   I won’t deny it however that sometimes… and in spite of my mental/emotional difficulties in those kinds of situations… I do miss the social aspect of eating… especially going out to restaurants with my wife and kids… and/or sometimes… my wife’s family-get-together events….

I wasn’t going to write my gastro/colitis story in this post…  or not in much detail anyway… I was going to write about all of this in a much different way… but hey… this sort of thing happens quite easily with me….  And as I am writing this in MS Word it has reached 8 pages…at least if you count the picture….  so  I think I will just end this right here….

I’m not writing any description or info for those pictures BTW… but as I was going through my phone’s picture folder and throwing out stuff or moving to a different storage I found those lying around… I might even take those out as I don’t feel 100% comfortable showing the world my tummy like that in all it’s glory… but for now it’s there….

As always feel free to ask any questions you might have… or leave me a comment, an email or a message on Facebook…. I’d be happy to reply…. and all sorts of feedback is always appreciated…

A Box Full of Fears

Everyone experiences some type of fear in their lives… and for many of us the first thought is to avoid situations where those fears will take over your mind….  We may not be fully aware of it… but it’s the way our brain works…

It might be something simple or something that doesn’t interfere with your normal life…. like you if you’ve had food poisoning dinging out at a restaurant you will most likely avoid going to that restaurant again…  Your mind may start to connect this event to certain type of food…. and you will start avoiding that food from that day forward…. or maybe you will start relating particular taste, or scent …or even unrelated food to getting sick and what you experienced after the food poisoning….  This is quite common and something that many people can relate to… myself included…  You experienced something that was bad or unpleasant, so you avoid it. You get those thoughts of “If I eat that, what if I get so sick again?” You just did a “what if”.  It’s just the way how the human mind works….

Now, let’s talk about fears of things that too many people seem easy to overcome…  or seem as irrational or even stupid to have…  but also… let’s spice it up with life experiences that fortunately most people will never have to go through… some kind of trauma…. where you have felt that your life may have been in danger… You may have had to experience excruciating physical pain for weeks after the event…. or even experienced those types of situation… or similar situations… repeatedly….

Let’s say you were a child when you experienced the trauma…  a child that was abused… not once but multiple times…  never knowing what would happen the next day… never feel safe…  Fortunately for some of us who have had to go through that sort of experience our brains come to the rescue and to help us to stay alive …It somehow helps us to live through each day of torture by making us somehow be able to dissociate or detach the fear from our selves…  Something that feels as if you are out of your body and you feel as instead of you being tortured it is someone else’s body….  or even as if you’re not there at all….

Years go by… and you are no longer being abused… you grow up but your brain is still working overtime by keeping out the danger…. but eventually it can’t do that anymore…. and it starts sending you bits and pieces  of what it has kept from you through the years….  That’s when you start collecting items in your box of fears… Maybe without really knowing why…. but every little thing/fear becomes an item in that box…   Soon the box is over full… and you can’t get a clear picture of why each item is there or how to deal with all of them because they are coming on too fast…   More time goes by and you eventually start to be able to make out what at least some of the items in your box stand for… or more like… how you can avoid it becoming alive in your mind… and situations where it becomes alive or where you think it might become alive…

Remember in the example I started this post with…. the part when you start to avoid everything that can possibly remind you of that unpleasant experience?

The later example is not really that much different from the first… the only difference is that there are more situations… more reminders and for some of them you may know that your fears are irrational… built up in your mind…and made impossible for you to control… Or that is what you believe… so instead of doing what you have to do your reaction is to avoid…

As result of the abuse I went through the first 27 years of my life I have something that medical professionals call Disorder of extreme stress not otherwise specified… or DESNOS… (To some better known as Complex Post Traumatic Stress Disorder or C-PTSD).  For me having this diagnosis doesn’t really mean anything other than it gives me access to therapists, doctors and other specialists who have education in that area… and who can give me tools that may help me and maybe my family to understand myself a little better…

I am still me… and I want to take a moment to say it….  I really do not like the phrase when people say “I suffer from…. [put anything here]” I know it may seem to some people that I suffer… but suffering to me is a negative word… something that gives you no hope, no escape or no chance to heal….

Ever since my box of fears started to fill up…. maybe 18 – 20 years ago… even long before that I have had to learn what most people learn while they are still children… In many ways I was a child mentally long after my body became an adult… but also at the same time a child that had experienced the ugliness and cruelty of humanity, and that from someone who my nature should have offered safety, love and guidance….

Today, I know I can trust my wife… even when I feel I can’t always trust myself… but I feel as I am getting better at that too… I usually know what to do… or what not to do…

I don’t really want to go into too many details but yesterday my wife had to make an appointment for me because of a physical problem that I know very well can lead to more serious problems if not treated…   I had/have an infection in my mouth…   I have many items in my box of fears that hold horrible memories involving my mouth… and though most of them are since my childhood some are even more recent than that…  and ironically I have called some of those recent fears up on myself….

Yes, my wife made an appointment for me, and I really was planning on going…. but my brain started spewing out all sorts of reasons for me not to go…  all sorts of “what ifs?”  …spiced up with irrationality…as I knew that no one was really going to hurt me… at least not on purpose …and also knowing I have been through much bigger things than what this could ever be…. but not the less I freaked out, and refused to go with her….

But today was another day…. and another chance…  and well… it turned out to be a no big deal… and a big box of antibiotics… and come back again next Friday…

Will that result teach my brain not to over think my next appointment …or future appointments?   I honestly can’t say for sure… as this wasn’t the first time something like this happens…  but maybe I need to start paying more attention to my box of won battles …That box is not empty…. but it is something that I need to be reminded of every now and then… or it will be outgrown by the other one….

Kind of on a blogging brake…

I have been neglecting this blog lately… I know… and I probably will be doing exactly that for a while… It doesn’t mean I’m not really writing anything though but I have been slowly working on writing my story for a while now… Like I said it is coming along very slowly… one word at the time….

As you can imagine it’s not easy for me to write and having to go back in time to remind myself of that time… but it also gives me time to reflect and think of how far I have come… and I lucky I feel to be alive…

It also makes me realize that as a child you really don’t have the language to describe such things as sexual abuse, rape, suffering… torture… You don‘t know what is happening…. or why it is happening…. You don’t know or understand anything about mental illness or good… or evil… You only know what you are told… even though you don’t really understand it…

As an adult I still have problems with getting this into words… but I have the resources to find them… I also know that “writing it out” has helped me see a lot of things differently… Things that I have carried around inside of me for a long time and not had the chance to see or realize they were holding me back in my journey to heal… or to see and feel…and truly believe that I am not who my mother believed I was…

Twenty years

There is something inside of me so I feel I must try to write in an attempt to get it out of there…

This day, January 17th 1995… or 20 years ago I did something that I have had to live with ever since… something that I have regretted and would do anything to take it back… to somehow be able to go back to the hours before it happened and change the chain of events that led to it…

This involves a car, alcohol and two people I loved. I was the one driving… I was drunk, Chris, my best friend and my sister Maria, where in the back seat… none of us wearing a seat belt…

I remember only bits and pieces…

Afternoon January 16th… Chris and Maria were looking for someone to drive them to a party… They said they weren’t going to stay there for long, maybe for one drink and then go back home as this was in the middle of the week and Chris had school the day after…
Chris asked me if I could do this for them… My father was there and said since I was fresh out of rehab it wouldn’t be such a good idea… I guess something in me snapped when he said that and even though I knew he was right I agreed to do this for Chris and Maria… I told my dad not to worry and asked him to trust me on this…

We arrived… I told Chris and Maria that I was just going to wait in the car and they went inside… a few minutes later…. someone came and invited me inside for a coffee. “Help yourself”, she said. Once I got in someone else offered me a drink… and without even hesitating just a little bit I accepted… and… I don’t know how many after that… however I made sure Chris and Maria didn’t see me drinking. They were also quite drunk that night so when it was time to go back home they didn’t notice… It was a few minutes after midnight when we left the party….
As we walked to the car a thought crossed my mind… I remember thinking that we would most likely not make it home in one piece…

I don’t remember the exact moment of the crash… maybe a little while the car was still rolling… I remember looking for Maria and Chris as they weren’t in the backseat… lots of glass… I managed to get out… panic… I saw Chris… he was under the car… I felt sick… and remember thinking he must be dead… Then someone came and said something… and the next thing I remember is waking up in the hospital…

My father was in the room when I woke up… I wasn’t sure at first if what had happened was a dream or not so I asked him. He told me I should “pray for Chris and Maria to live” and then he walked out…

I only had a bump on my head, a few minor cuts and bruises… I was discharged from the hospital around noon…

Chris left the hospital many months later stuck in a wheel chair for the rest of his live. We never really got Maria back…. She lived for 4 years…. unable to take care of herself…. She suffered a severe head injury in the crash that left her with brain damaged. She was unable to control her body and needed 24 hours of care. She died because of me March 20th 1999 at age 31. Chris died two years later.

It’s been a long time since this happened… 20 years… this day always brings out the memories… the fear at the time of the crash… shame and guilt… self-hatred…. anxiety… and fear… and words from my childhood… which make those feelings multiply in size… the shame… self-hatred…

It’s been both ways today… up and down… I had some problems sleeping last night… had my meds like usual and went to bed… I don’t have to take those every night… but they help me relax and that usually means I can sleep through the night without feeling like a zombie when I wake up… Last night I did fall asleep soon after I got in… But woke up again… I don’t know what woke me but I felt afraid… panic almost… it took me some time to calm myself down… I know that when something like this happens I’m supposed to wake Sunna up… I didn’t want to at first… as I had other thoughts… preventing me from “doing the right thing”…

Morning was ok… we went to Sunna’s parents… and we stayed there for a couple hours going through old photos…. Then we got back home… and did stuff around the house… talked to friends in far countries… and Emma… played my piano… pretty much a ‘normal’ lazy Saturday…
And for the last two hours or so I’ve just been writing my way out of this day…

This is something that I have been playing a lot over the past few days… Chris and Maria loved this song… and I have memories of them involving this song…

For those you are on my Facebook… this is a new version… and I hope it’s better than the others I’ve already posted….

  1. Broken Butterfly Wings Gabriel J Arsante 7:27
  2. Coldplay - A Sky Full Of Stars - Piano Cover Gabriel J Arsante 4:30
  3. No. 11 Piano Gabriel J Arsante 2:57
  4. Forever in my Heart Gabriel J Arsante 3:36
  5. Chopin Piano Concerto No. 1 - Movem. II - Romance, Larghetto Gabriel J. Arsante 9:58
  6. Canon In D 2014 Gabriel J. Arsante 2:28