…Until We Meet Again

To Chris Dec 20 1968 – April 12th 2001

16 years since you left… way too soon…

I don’t think I ever thanked you properly for believing in me… for not listening when I didn’t go outside with you… You always wanted to go somewhere… wanted to study in the sun… go to a party… or meet people at a coffee house… When I wanted to lock myself in my room you persuaded me to come out from there… you saved me from myself so many time by telling me to come and talk…

We talked about anything and everything… I wanted to tell you things but it was almost like you knew already… I know you knew what I did when I was alone…. that I didn’t have to tell you unless I wanted to… and all that you asked as for me to be safe…. I wanted to and you helped me stay safe… Thank you for that…

You taught me so many things… and many of the things you taught me neither of us knew at the time… Even long after you left… I’m still learning from you… or rather… it’s more like I am just now taking in what you said… what we talked about both in our “serious” talks and while laughing together … and from the letters you left me… I realize now that I am a better person than I would have been if I hadn’t met you… because you taught me to love other people… you taught me to care about other people… you told me to laugh… and allow myself to believe that I deserved to be loved and cared about when I believed I shouldn’t be….

I want to tell you how much I wish you’d be here…. and how much …I want to hear your jokes that always made us go rolling on the floor laughing no matter how silly they were… You would have had a ball of fun with the poop jokes… and stoma farts and tummy sounds would probably have caused me a competition of some sort… I wish I could feel your hugs and have back the moments of the “serious talks” we used to have …I wish I could tell you over and over how I feel about you as my friend… my buddy …I wish I could have told you more often about how much I love you…. and how much I appreciate you coming into my life years ago and helping me to gain at least… some sense of my life… and inviting your sister to the November concert… Thank you for that…

I have so many thoughts running around in my head right now… some that make my heart filled with love …some make me want to cry my eyes out… and everything in between… I am scared for the future… but I know I can talk to you and get my strength from your words… from the memories… You are my friend… my best friend… Thank you for everything….

Love you always and forever…

Moments of Being

The Night Before Our Last Goodbye…

I spent most of the night with her… It wasn’t bad… She was calm… unusually calm… She told me I was “doing good”…  but yet she warned me as usual, to “be careful” …  Of course I knew what she meant by that… and I told her, like I always did… not to worry…. I would…

Time passes in a blur… spent consciously in a faraway place deep inside…

It’s 5:30 in the morning… She tells me to go… I give her a goodnight kiss and head home to my wife with a black spot on my heart… It’s just a few minutes walk… 15 minutes tops…

It’s a little dark… and cloudy…  no moon  or stars in sight…  and it’s a bit chilly… but no wind

I decide to quietly look at the kids… to see if they are alright… In the girl’s room I almost fall flat on my face in the dark while trying to climb over a pile of cloths lying on the floor…

I smile… as I remember them playing dress up a few days before and Meg putting on too many layers of cloths with her sister’s assistance… then unable to get herself out of the mess since her sister refuses to help her out….

I manage to keep my balance and I stand there quietly… just long enough to hear them breathing peacefully in tune with each other….

I climb back over the mountain of clothes and into the boy’s room….

Mr. Teddy Bear and David have kicked the covers down to the floor so I pick it up and tug both of them in… But as I leave the room his arm and his leg reach out from under it…

It’s already getting close to the time when Johnny usually wakes up and I’ll just take a peek at him… just enough to convince myself that he’s OK…

From the master bedroom I can hear Amber is starting to wake up…

Within a few minutes the house is awake… and no time for me to sleep as Sunna and I had to leave early…

The Last Goodbye

We were invited to a birthday party in the city… Honestly I wasn’t that keen on going at all but I was willing to do it for my wife… and she was really looking forward to it.

A few days before… my mother had said she would be more than happy to babysit the kids but Sunna suggested we would just take the kids with us since her sister had already offered to baby-sit for us while we were at the party…

Taking five children on a long drive wasn’t exactly my idea of “a brake” or fun at the time so I told Sunna that it would be better for them to just stay at home… Somehow I got her to agree with me to leave the twins and the boys at home… We would only take Amber with us but she was only a few months old and still breast feeding…

We said our goodbyes in the morning and took off. I remember telling Sunna not to worry because we would be back the next day.

When we arrived to the city we took the baby to my sister in law and spent a few hours there… then in the evening we went off to the party. I don’t really remember much from the party but we didn’t stay there very long… At least the party was still ongoing when we left… but instead of going back to Sunna’s sister place we drove around the city for a while…

It must have been almost 3 o’clock when we decided to go to Aurora’s house and go to sleep. When we got there we could hear Amber crying and I thought that something must be wrong with her. I remember thinking something like “Maybe she was sick”…

When we got inside… Aurora was on the phone and we could see that she had been crying. When she saw us she put the phone down and walked towards us with tears flowing down her cheeks. She told us to sit down and hold each other. We had no idea what she was getting at but did what she’d told us.

I didn’t want to believe what she said….

There had been a fire at our house and our children and my mother had died. Everything was destroyed!

Chaotic Evil

I got on the phone and called my father. I realized this wasn’t some kind of a sick joke as I was hoping.  I can’t remember what we said… what words were used… but there was agitation… anger at my end of the line….

My only thought was that this was my fault.  I hadn’t done what I was supposed to do since we left the house….  and now…. it was too late…

I remember debating in my head… – what to do –

The news of the children dying was horrible but…. The mother didn’t exist anymore…

The same words kept playing inside my head… over and over again… This is all your fault diabolico….  I felt I had to do something about it…  but it had to wait…. I had to be alone for that…

Everything went crazy that night. Sunna wanted to go back home but I couldn’t find any reason to go and Aurora was also telling Sunna not to go.  She was right as this wasn’t a good time for her to be driving anyway.

Soon Aurora’s house was full of Sunna’s family.   I couldn’t stay any longer…  I took off without saying goodbye to anyone….   ended up in the nearest bar….   Had a few  drinks… and there was that voice again…

–   “This is all your fault, DIABOLICO” !

Another voice, much weaker….

–   “You’re free! –  She’s not here to control you anymore…”

I felt I could never go back there… To me it seemed that there was nothing there to go back to…

That though was even more scarier than the rest…  She wasn’t there anymore!  I was alone!  I could never say anything about it…  no one would ever know…  I was free to do what I wanted but afraid…. Afraid and relieved at the same time…

I felt guilty…. it was all my fault… I knew I had been slacking off… being careless… I was EVIL… just like she said…

–   “Put on earth to destroy people’s lives… in disguise off an angel… “

My mother wanted to take care of the children and I had convinced Sunna to leave them at home… She wanted them to come with us….   I should have listened to the signs… the dream…. nightmare a week before…

I shouldn’t have slacked of…  I needed to feel what it was like…. to burn… to feel it burning….  It had to wait until the morning….  until the pharmacy was open…

Bits and pieces…

twins

The small treasures… the memories…

Memories that give you goosebumps …make you smile…

Memories of laughter… a child voice… children playing while you work…

You remember the words they used… and you smile…

You remember Kim’s interest in learning how to play the piano… you remember her sitting on your lap at the piano asking you to play something… of her saying…

“I want to know what it feels like”

…and you remember Meg dancing around in her tutu… pretending to be a ballerina…

You close your eyes… as you play… and you can hear them… hear their little voices… hear their laughter … or their bickering over a barbie doll and what dress she should wear… You hear them solve the argument as one of them suggests the blue fairy princess dress…

“Play the tummy tickle song daddy!” one of them says…
…and they laugh… and they dance… and they laugh…

“Play something beautiful!”

…and they dance… and they smile… and they dance… like two little butterflies…

You smile… They are yours forever… and you feel you are the luckiest dad in the world…

Forever 5 years old…
Happy 29th Birthday Kim and Meg.
I love you always <3

Love Struck

He wasn’t supposed to fall in love… forbidden… she told him… She said he was “incapable of love” and that he was only thinking he was in love when in fact it was just lust…

“Remember the evil in you…” she said…

“You make them fall in love with you and then… bahmm! Something bad happens… They will get sick… or someone they love would get sick or injured… Something terrible would happen…”

That’s what she said… and he was afraid not to believe her… Too many signs of her being right… The shadows… would remind him as well…

——–

It wasn’t until my last year at school I started to give in to the girls… or not until Chris became my roommate… Girls seemed to like him and he like them… Both of us played around those first four months of the school year… We partied every weekend…. we got drunk… showed off our music abilities and the girls where there…

My mother’s words were constantly playing in my head… so I broke a few hearts… possibly talked about as the boy who only wanted them for the sex…. not their love or to give them my love…

I believed I was incapable of love… and in a way I didn’t understand what it meant…

——–

Final concert of the semester… Friday November 30th 1984… Last year’s students… Two hour program… I was playing Beethoven’s Moonlight Sonata… all three movements…

I hadn’t seen Chris all day… He had told me he was coming but he wasn’t there yet… but he was late… The show had already started… It was almost time for me to walk on the stage… I noticed Chris walk in… with a girl… the most beautiful creature I had ever seen…

Did Chris get himself a girlfriend without me knowing about it? I thought to myself… Somehow that thought changed… It could have been someone saying it out loud… but I knew this was one of his sisters …not his girlfriend.

For a moment the time stood still… Like in slow motion she ran her hand through her hair… said something to her brother… walking slowly… gracefully… It was that moment… like… she put a spell on me… an arrow through the heart…

Someone said something behind me… For some reason I just couldn’t take his eyes of her… Nothing else mattered… It was just me and her… It felt like in a dream… the one you don’t want to wake up from…

Again… someone said something… and I felt someone laying a hand on my shoulder… “You are on the stage! NOW!”

——–

Throughout the performance I glance my eyes to her direction… I can’t see her though… but I know she is there… I make an effort to speak to her through the piano… and put my every emotion I humanly can into the music…

Once done… I stand up… The guests seem happy… I try to look but there are too many people… I can’t see her…

“Didn’t Chris say he was going to meet me after my performance?” I think to myself… “I’m sure he said so… He better take her with him…”

——–

Then I remembered… “You cannot fall in love”

——–

I didn’t meet her that night… didn’t talk to her… I left before the concert was over… had a few drinks and eventually passed out…

Next morning… or afternoon… when I woke up… Chris was there… reminding me of our party in the evening… people to call to see if the room was ready… and things to prepare… Somehow I managed to ask if he had invited his sister… but knowing she was going to come made me nervous…

We had rented a little party room or a bar for the party…. not the first time…. but we arrived there early to take care of a few things… Everything was ready though…. so Chris said he was going to go and get his sister… but I’d wait for the guests in case he would be late… I know it was way too early to start drinking but I was nervous. People were starting to arrive…. but Chris wasn’t there yet…. When they finally showed up I’d had too much to drink and I’d fallen asleep. Somehow I must have gotten home and when I woke up the next day with a splitting headache and feeling ashamed…

——–

I didn’t know how to stop myself from thinking about her…

I tried to fall out of love… I tried to forget about her… but I couldn’t…

It didn’t help that almost three weeks later it was Chris’s birthday party… I got drunk… yes… but not too drunk… and she got a little drunk…. but we talked …and more 😉

31 years later …I am still in love… Yes we’ve had our tough moments… yes… I’ve almost lost her a few times… but each time my love for her grows even more…

I know I am not always the easiest person to live with… I know I have done things that have made her sad… even angry at me… but she has never given up on me… even when I gave up on myself…

She is the reason I am here… She is my strength… She is my best friend… my partner in life and the mother of my children …and with her I can do anything…

He can feel the tears in his eyes as he walks to her and silently put his arms around her…
– What’s wrong? she asks as she wraps her arms around him…
– Nothing’s wrong.
– Then what is it? she asks again and he can sense she’s worried…
– Nothing’s wrong… he replies… I just remembered something…
– What is it?
– I just remembered how much I love you… and I realized how horrible I’ve been to you…
*tears*
– Can you forgive me? he asks through the tears… Can you forgive me for everything that I have put you through? …and please don’t say it was never my fault… I just need to hear you say that you can forgive me…
– Yes of course I can my love… I have already forgiven you… I love you…
…and for a while they just stand there in silence in the middle of the kitchen in each other’s arms and cry together…

NOTE: A part of this is a draft and/or bits and pieces from older writings… so I know this is all over the place… and I know there are parts missing…and at least… for those who haven’t read much on my blog or don’t know my “story”… this may not make much sense at all… but right now it’s the best I can do…

Twenty three years…

The night before our last goodbye…

I spent most of the night with her… It wasn’t bad… She was calm… unusually calm… She told me I was good… It’s 5:30 in the morning… She tells me to go… I give her a good night kiss and head home to my wife with a black spot on my heart…

I decide to quietly look at the kids… to see if they are alright… In the girl’s room I almost fall flat on my face in the dark while trying to climb over a pile of cloths lying on the floor… I manage to keep my balance and I stand there quietly… just long enough to hear them breathing peacefully in tune with each other….

Mr. Teddy Bear and David have kicked the covers down to the floor so I pick it up and tug both of them in… But as I leave the room his arm and his leg reach out from under it…

It’s already getting close to the time when Johnny usually wakes up and I’ll just take a peek at him… just enough to convince myself that he’s ok…

From the master bedroom I can hear Amber is starting to wake up…

Within a few minutes the house is awake… and no time for me to sleep as Sunna and I had to leave early…

We were invited to a birthday party in the city about 5-6 hours away by car… I wasn’t that keen on going at all but I was willing to do it for my wife… and she was really looking forward to it…

A few days before… my mother had said she would be more than happy to babysit the kids but Sunna suggested we would just take the kids with us since her sister had already offered to baby-sit for us while we were at the party…

Taking five children on a long drive wasn’t exactly my idea of “a brake” or fun at the time so I told Sunna that it would be better for them to just stay at home… Somehow I got her to agree with me to leave the twins and the boys at home… We would only take Amber with us but she was only a few months old and still breast feeding…

We said our goodbyes in the morning and took off. I remember telling Sunna not to worry because we would be back the next day.

When we arrived to the city we took the baby to my sister in law and spent a few hours there… then in the evening we went off to the party. I don’t really remember much from the party but we didn’t stay there very long… At least the party was still ongoing when we left… but instead of going back to Sunna’s sister place we drove around the city for a while…

It must have been almost 3 o’clock when we decided to go to Aurora’s house and go to sleep. When we got there we could hear Amber crying and I thought that something must be wrong with her. I remember thinking something like “Maybe she was sick”…

When we got inside… Aurora was on the phone and we could see that she had been crying. When she saw us she put the phone down and walked towards us with tears flowing down her cheeks. She told us to sit down and hold each other. We had no idea what she was getting at but did what she’d told us.

I didn’t want to believe what she said….

There had been a fire at our house and our children and my mother had died. Everything was destroyed!

Two Special Birthday Boys

Two very special boys were born on this day… One of them… or Johnny as we call him…was born 24 years ago… and the other…. Gabriel 17 years ago…

Johnny was supposed to be born around the 11th but for some reason he decided it was best to wait. His mom’s doctor didn’t agree with him so he gave him a little “push”.

He was a healthy little boy… at birth a bit bigger than his older brother, David…   and this time I was blessed with the privilege of being there… to see him draw his first breath in this world and to make his first sound…

Late nights… working… over at the “other house”… or away for studio work…   Almost every night… or in my memory…. it seems that way…  I hardly ever saw him awake except maybe when his mom took him over to check on us…

I can still picture his little face in my mind… fast asleep in his crib… when I came home.  Everybody was sound asleep…  As I laid in my bed wide wake for hours with my eyes locked at this wonderful little being… listening to the music of his breath ….and his mother’s…   those two wonderful human beings…    Sometimes an overwhelming feeling of something horrible happening to them would hit me….  all of them… or fear of losing them…

I wish I could remember more about him… Instead I have memories I want to forget… memories that are stuck inside my heard and take over when I make an attempt to remember the things I want to remember…

Johnny was almost 14 months when he was taken away from us along with his two older sisters Kim and Meg and his brother David….  almost 23 years ago…    yet… on his birthday each year we celebrate the time we had with him and got to know him…. He will stay in our hearts forever….

Seven years later another little baby boy was about to be born on this day…  Johnny’s little brother….  Gabriel….

It almost felt as he was waiting for the right day to be born…  His due date was set on June 17th… and his mom believed he was on his way that day…  even had his mom and dad rushing to the hospital …but he held on to his save warm place…  and probably smiled and thought  to himself… “false alarm – only kidding!”

On the night of the 19th or around 10 o’clock… another trip to the hospital…  mom having contractions on the way and at one point we thought she wouldn’t make it to the hospital… but we did… and things slowed down again…   Another false alarm?    Nope!…   It was almost midnight… and things changed fast…. and all of a sudden there was a baby…  8 lbs. and 2oz.  ….just right after midnight… 12 minutes…

Happy Birthday

twins

For my girls… Kim and Meg… (04/15/87 – 08/16/1992)

Today it’s been 28 years since they were born… my beautiful little girls… They were always happy, laughing, singing and dancing was their favorite thing to do… Kim loved to sit by my side and watch me play the piano… she asked me to teach her… and she was a fast learner… Meg said she wanted to live on a farm, with animals… but like many little girls she also wanted to be a princess, living in a castle… “when she grows up” as she always said…. They were only 5 years old… forever 5… yet I wonder what they would be like today if they were still here…

In my mind I can see you dance….
like two little butterflies
smiling and laughing… happy
I smile at the thought
but yet I can’t stop the tears

Happy birthday little girls…. love you forever….

– this is not me playing… This is my son… and originally made as a school project… This is however a song composted my me… dedicated to Kim and Meg — and yes… I can see them dance…

To my friend

To Chris Dec 20 1968 – April 12th 2001

Fourteen years since you left … way too soon…

I don’t think I ever thanked you properly for believing in me… for not listening when I didn’t go outside with you… You always wanted to go somewhere… wanted to study in the sun… go to a party… or meet people at a coffee house… When I wanted to lock myself in my room you persuaded me to come out from there… you saved me from myself so many time by telling me to come and talk…

We talked about anything and everything… I wanted to tell you things but it was almost like you knew already… I know you knew what I did when I was alone…. that I didn’t have to tell you unless I wanted to… and all that you asked as for me to be safe…. I wanted to and you helped me stay safe… Thank you for that…

You taught me so many things… and many of the things you taught me neither of us knew at the time… Even long after you left… I’m still learning from you… or rather… it’s more like I am just now taking in what you said… what we talked about both in our “serious” talks and while laughing together … and from the letters you left me… I realize now that I am a better person than I would have been if I hadn’t met you… because you taught me to love other people… you taught me to care about other people… you told me to laugh… and allow myself to believe that I deserved to be loved and cared about when I believed I shouldn’t be….

I want to tell you how much I wish you’d be here…. and how much …I want to hear your jokes that always made us go rolling on the floor laughing no matter how silly they were… You would have had a ball of fun with the poop jokes… and stoma farts and tummy sounds would probably have caused me a competition of some sort… I wish I could feel your hugs and have back the moments of the “serious talks” we used to have …I wish I could tell you over and over how I feel about you as my friend… my buddy …I wish I could have told you more often about how much I love you…. and how much I appreciate you coming into my life years ago and helping me to gain at least… some sense of my life… and inviting your sister to the November concert… Thank you for that…

I have so many thoughts running around in my head right now… some that make my heart filled with love …some make me want to cry my eyes out… and everything in between… I am scared for the future… but I know I can talk to you and get my strength from your words… from the memories… You are my friend… my best friend… Thank you for everything….

Love you always and forever…

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…

Birthday memorial

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