Going Up

This winter an article I wrote was published in Ostomy Canada, a magazine from the Canadian Ostomy Association. To top it of, they made it a cover article. The article is mostly a summary of what I had written about on this webpage and came out great, with great editing and pictures. You can read the article here.

Welcome to my page. You might have stumbled upon it through coincidence or you might be looking for something, or someone, who has experience of illness such as colitis ulserative, colon cancer, ostomy or manic depression. And you might be searching for someone who has, for some strange reason, experencd everything mentioned above and is still living life to the fullest. If so, you might be at the right place.

I originally put up this page in 2010 aiming to to inspire people with ostomy, as my life with ostomy seems to be a bit more extreeme than others, and it has resulted in readers worldwide. Therefore, most of what you can find here is related to my adventures with ostomy, in text and video.

But as ostomy is not my only life limiting experience I have included thoughts about various things on this page, which I think highly of, and hope to continue writing about. This page might develop into something more, but it might also stay unchanged.

Either way, I hope my webpage shows you that whatever the limitations are, they are only hurdles and obstacles that can be  overcome – as long as you want to enjoy life and get the most of it. Sounds cheecky but its true.

Underwater with Hekla – Swimming in France this summer

As I have said before, I have been diagnosed with bipolar disorder four times in my life, in ´99, ´03,´11 and now in ´12. They have usually gone by rather fast and have not gotten as serious as the diagnosis usually predicts, although the first experience was most extreme. However, everyone around me have been prepared for the worst, where doctors are usually the ones spreading fear of what it could lead to… which really hasn‘t helped with my personal dilemma.

But what is bipolar disorder? You can read all kinds of definitions about it, like this one (http://www.nimh.nih.gov/health/publications/bipolar-disorder/complete-index.shtml ), but these  descriptions aren‘t really describing my experience.  Therfore, I wanted to  try to describe it, in the most simple terms, in hopes of others would perceive it differently… Here goes.

Physical and mental changes

• Overall, my manic episodes include greater sense of what is happening in my environment. That simply means that my five senses; hearing, sight, touch, smell and taste are somehow amplified. This can actually be very interesting and make a casuall daily things become quite eventfull.
• This is probably happening because of the fact that my  brain starts to work a lot faster than it usually does… which makes every thought process a lot more rapid and thereby deeper than usually. Ideas tend to come faster, sometimes non stop, and my analyticals and reasoning skills become really fast.
• During this process I am more open about my thoughts and feelings and tend to be able to experience things with more depth. Simply put, its like being tipsy from alcohol where the communicational barriers are less existent and can lead to blunt remarks about myself, my thoughts and people. Also, I‘m told, being bipolar is similar to being on cocain, as the personal ego is high and the body and mind is full of energy.
• My physical ability is also heightened. As my awareness of my body is greater and I am suddenly capable to things I had not been able to do before… or thought I could not do.  One of the  recent „tricks“ was, for example, to quickly roll backwards and then push myself up to a handstand… which I had never, ever done before.

Communicating with others

• Along with this, I become rather sensitive to people attitudes and feelings and whenever I was around a person who was somewhat depresses, agressive, angry, negative, fearfull etc. it affected my feelings and attitudes towards them. I guess I somehow mirrored the person I was communicating to, which made me show different moods to different people.  This lead to the sad development that a certain group of people only experienced my negative sides, unaware that I was „mirroring“ them, and I thereby confirmed their „assessment“ of my mental state.
• All of these new experiences happened rather quickly and could be a bit overwhelming (especially when I was younger), which made these experiences very confusing. But when I talked about these problems, in the speed that my brain was working and limited by the above communication problems,  it turnes out to become really difficult to communicate with the other „slower working brains“ around me.
• All of this lead to a simple communication mistake where I was not able to express myself completely and the one receiving them was to full of ideas of mental illnessess that he/she was unable to really listen. This lead to a non stop spiral effect where I felt no one was really listening to me as they seemed to think I was irrational, mentally ill or even just plain stupid.
• The result… little trust on my behalf towards the people that tell me they want to help me, bad attitude on both sides and difficult communication. Not a very positive environment when going through a bipolar episode…

To me, mental ilnesses are not dangerous, at least mine havent been. But the false understanding of the illness and big lack of communication creates an environment withinmental instistutes that is by no means suitable for a person experiencing the manic experiences I‘ve described above.

This really needs to change.

This is my first effort to describe my experience of my my bipolar disorder,  with very few words. With time, I will probably be able to describe it better and give it more depth, but the main message is this:

Bipolar disorder is not dangerous or life threatening. It is actually just a positive healing process and kind of interesting if people would stop and realize it. Bipolar disorder is also something that happens after a difficult personal experience and when people are in that state  they need to be helped through it with love and understanding. That way, the entire process might even be a positive experience which would leave the person going through it a stronger person, and not ashamed of it… as I have usually come out of it.

Final note: I am not talking against mental drugs, of course they can help. I‘m simply saying, change the work methods, attitudes and social stigma about these conditions and then maybe the extreme focus on drugs will change for the better.

Two weeks ago, I decided to go to Akureyri, “my home”, to regain strength as I was trying to recover from a difficult period in my personal life. I felt as I was on a crossroad and needed to get out of the reality I was a part of. Originally I decided to go to a friend but as I realized my mental stability wasn’t good I opted for going to the hospital. Not because I wanted to, but because I felt pressured to go there and believed that the ones closest to me would be at peace, and would thereby give me peace.

Three days later I was out of the hospital, as the doctor said I was ready and I needed to end the recovery by my own.

But forgot my backpack and needed to get it. Here’s what happened:

1. I arrived, said I was picking up my backpack.
2. A doctor, I hadn’t met, asked me to talk – along with a nurse and a security guard.
3. I said “sure”… and thought I would mess with them a little, as I wasn’t satisfied with their work.
4. I was one, they were three.
5. 10-20 minutes passed.
6. I was now one, they were seven – where two police officers and two employees had joined the “force”.
7. They looked at me as I was crazy and dangerous.
8. I backed away, they approached me and I felt very intimidated.
9. (I was only here picking up my backpack, I had just gotten out of a meeting because of work, and was going back to my cottage to relax).
10. I asked them to back off, without success and told the security guard that I would hit him is his west (he had a security west on him).
11. I backed away again, they approached me again.
12. I told him again – “I’m going to hit you in the chest” (security west).
13. I hit him.
14. He pushed me.
15. I let my self fall down, scared they would attack me.
16. The police officers jumped at me and dragged me into my room (along with the others), and I tried to get loose. I’m told I hit the security guard during the process.
17. I screamed, with all my lungs – “GIRLS!!!!” (that is, the female employees).
18. They put me to my in my room and I started undressing, to prepare for the shot they had, and show them my ostomy – just to get some simpathy (This wasn’t my first shot, I wanted to get through it easilly).
19. Five of them jumped at me and turned me to the ground.
20. They held me down and one of them undressed me below the waist.
21. I pleaded for a 30 second break so that my body could prepare for the shot – otherwise it would hurt greatly and mess up my energy for days. (I knew… as this wasn’t my first time where I was forced like this).
22. I took a deep breath, held it in for 30 seconds, exhaled.
23. I said,”Ok, do it”.
24. They injected me in my but checks, both of them. During that time four men were holding me down with full force and I was partly naked below the waist.
25. I stayed still on the ground, they released me gradually.
26. I congratulated them for a “Job well done” and said that they “Must be proud of themselves”.
27. They got out, but didn’t look very proud.
28. I was angry, very angry. And went to bed to sleep.
29. I woke up the day after, isolated and guarder by a security guard, the one that had the security chest, and the one I mistakenly hit during the “assault”.
30. I talked to the guard and we came to peace.
31. The following days were in isolation and all the employees either feared me or loathed me – thats at least what I experienced. The days got worse, with what I experienced as mental abuse… which isn’t any better than the physical abuse I got that day.
32. Rape would probably be the correct name for the abuse I experienced that day.
33. During this time, I got a court order that I could not leave the hospital for 21 days. I filed charges and went before a judge to pleade my case. I did it well but the law wasn’t on my side.
34. A few, very difficult, days later I was released from the hospital, and the court order was taken back – because of good behaviour and quick “recovery” from my mental illness.

Staying in a mental institute is, I think, pretty close to being in hell… especially if you are a tall, physically fit male with fire in your eyes.

I forgot my backpack… that is my big mistake.

This is only a sample of how it is like, and every day is a big challenge, for the soul and mind… which is sarcastic as that is what needs to recover.

Something is really wrong in modern mental institutes today, it doesn’t have to be this way.

It needs to change

…

The lyrics in this song from Gnarls Barkley describe my thoughts and feelings very well. Listen to it and please learn from it.

I put in a post last year about my Bipolar Manic Illness, in hopes of having influences on peoples misunderstanding about this simple, yet highly misunderstood, illness. You can see the post here: http://www.goingup.me/confessions-of-a-life-enthusiast/.

The bad thing is, I got sick again, and the misunderstanding came back – full force.

I was deeply saddened that, despite my efforts, it had no effect on people - especially the ones closest to me.

Therefore, I will use all my “online” power to try inform people so that I will not get into this misunderstood environment.

I urge you to check out this video, and the ones following, as they put a new emphasis on this misunderstood illness. Also, If you know anyone with a mental illess, tell him/her about this video as I know that they will be greatly relieved to know that todays understanding of mental illnesses is very, very, very wrong.

I have a lot to say about this and will put it on this webpage, stay tuned.

P.S. I would love to hear from you, if you want to talk, be heard and be a part of this.

Best,

Ágúst Kristján
agustkr (at) gmail (dot) com
www.goingup.me
www.youtube.com/agustkr

I had a “birthday” yesterday, as there were four years since I was lying on a hospital bed, starting my recovering from the big surgery. Thinking back to the tough times at the hospital, and the bad health I had before the surgery, I was reminded of how great my life is now – with my lovely ostomy.

The ostomy gave me a new opportunity for life and the following four years have been a blast. With every year I have grown more comfortable with the ostomy and everything is simply getting more simple by every month. I guess the best measurement for how comfortable I am with all of this is that I have a tendency to forget my ostomy supplies when I go for travels…

On the “birthday” I did all kinds of things hardly possible before surgery. I went skiing, swimming and ended the day with a dinner party with friends, where I ate whatever was brought to the table. I was full of energy throughout the day, was relaxed and enjoyed every minute. More than 5 years ago I would have been paranoid about how to get to a toilet while in the mountains, would have probably taken a recovery nap after sking and would have brought my own meal to the dinner party… That is, If I would have had a good day… On a normal/bad day I would probably just have stayed home…

Life is great and my ostomy is what made that possible.

(I have not been active on this page lately and will probably not put in new blogs soon. However, If you are new to this page and are considering ostomy, or already have it, I urge you to check out my posts and videos which will hopefully show you that ANYTHING is possible with ostomy.)

I’ve just returned from Reno, Nevada – where I attended the UOAA’s(United Ostomy Association of America) annual conference. I was there as a speaker, where I told tales of my adventures and more, and also participated in the 4 day event along with 700 other ostomates. The conference was a great experinence for me as I met great people and learned a lot about ostomy, which will be helpfull for me in the future and hopefully the Icelandic Ostomy Association as well.

I also got to meet Rob Hill (see Rob Hill – a Pioneer) which was definitely a highlight for me and other like minded ostomates like Bob Baker, who recently cycled over America, and Rolf Benirscke who played professional football with ostomy in the eighties. Meeting all of these positive people assured me that life with ostomy can and will be great.

A lot of people were interested in my adventures and also very interested in my country, Iceland. I tried my best to answer them along with telling them about the option of buying tickets that my sponsor, Icelandair, had given me to sell, at a reduced price. A number of people showed interest but, as plain tickets tend to be a big decision, wanted to give it some thought. Therefore I will “advertise” these tickets here and whoever gives the best offer will get the tickets. Following is a short overview of what’s included in the tickets:

• A round trip to Iceland for two.
• Is valid from September til May, excluding the Christmas season.
• Net worth of $2,040.
• Flight taxes paid specially, about 100-300$ per person
• Icelandair flies from New York, Seattle, Boston, Washington.
• Hotel not included
• It is also possible to have a stopover in Iceland, on the way to Europe

Those interested can contact me through e-mail, agustkr(at)gmail(dot)com and I can send them more detailed information.

Finally, here is a promotional video about Iceland, as it gives a good insight into our beautiful and fun country.

I went to Mallorca (a Spanish island in the Medditerranean) with my wife and daugher. Although is was mainly a typical touristic trip; sun, sea, sand and swimming pools, I managed to try out this thing called deep water soloing (DWS). DWS is when you climb cliffs above sea and use no security line or anything. So the only option when finished or when you fall is to fall into the sea. This is amazing as when you‘ve reached 15 meter (50 feet) height you really don‘t want to fall down. The spanish word for this type of climbing is psycobloc which can be roughly translated to pshycoclimbing – I guess that describes it the best.

Being an average skilled climber I didn‘t have the possibility to enjoy this as much as I otherwise could have but having the possibilitiy to see and try out these rocks (which many of the greatest climbers in the world have tried out) made it really worth the trip. Also, It‘s always fun to try out something different, and a bit scary, that totally takes me out of my element.

Below are a few pics from this little adventure.

During recent weeks and months a new though has been developing in my mind and I thought I would share it here.

It has to do with my favorite topic - EXPLORATION, that is, to go out into the unknown and explore whatever is out there.

The thing I realized, is that I have actually been doing two types of explorations, that is:

• Exploring unknown territories, like mountains.
• Exploring my own limits, to find out what I, as a person, am capable of.

Regarding the later type feel I am a true explorer, especially because I have ostomy which I though would limit my life a lot. Due to these limits I am repeatedly exploring my boundaries but have still not met a real barrier. This personal exploration of my limits has brought me to places I didn’t think I would ever experience and has helped me realize that I am capable of so much more than I first thought… and brought me, repeatedly, immence joy.

While realizing this I wonder if majority of people don’t seem to explore their own limits -  as they seem contempt in their comfort zone, which is usually safe and reliable. Maybe this is a misunderstanding on my behalf as my explorations are rather extreme but if I am right… a lot of people are missing out… a lot.

Therefore I ask you, dear reader: Do you explore your personal limits?

It doesn’t have to be something as extreme as my quests are but as long as you try out something that mabe scares you a little you will take a big step forward towards realizing what you are capable of – and hopefully opening your mind for something more. Plus – it is usually really fun

I challenge you to explore your unknown capabilities and hope that your discoveries will be as great as mine.

I have a confession to make… A big one and I hope to have effect on those reading it. The thing is, my problems with my health started when I had recently turned 19 years old, in 1999. And it had nothing to do with my gut, although it is connected.

I have been “planning” this confession for a long time. That is, once I had reached a respectable position, as a professional, mountaineer and life enthusiast I would come open about this. Therefore I am confessing this here as I believe I can now change people’s attitude towards all kinds of illnesses.

My condition in 1999 affected my mind and soul, as I was diagnosed by doctors with bipolar disorder, also known as manic depressive disorder (Ísl. geðhvörf). I was committed to a mental hospital and stayed there for about 2 months. This happened again in 2004, a couple of months after I was diagnosed with Ulcerative Colitis. And for the third time, just 11 days ago, I went to the hospital in Akureyri (capital of north of Iceland) with the same condition. Just yesterday I got back home and am still recovering a really difficult period in my life.

Bipolar disorder is, by definition, manic behavior (going up) and then depressive behavior. I have however newer experienced depression and that alone makes one question this diagnosis. I ask you to have in mind that my case of “manic” behavior was never serious as I “only” become hyperactive which scares others around me which ends, after a strange chain of events, with me going to a hospital.

This hasn’t been a secret but at the same time I haven’t been talking about it publicly as I know, by experience, that  people do not understand a condition like this. Only people who have been committed to a mental institute truly understand what happens to a person in a condition like mine.

Having in mind what I have gone through I believe I am a walking contradiction as I should be dead by now. Given the following “diagnosis’s”  by doctors:

1. Bipolar disorder in 1999
2. Ulcerative Colitis in 2003, for five years
3. Bipolar disorder in 2004
4. Cancer in 2008
5. Ileostomy in 2008
6. Bipolar disorder in 2011

And this is the really short version

So this is me.

And I live - despite limitations - an incredibly eventful life.

I am a life enthusiast and hope everybody, especially the ones living with limitations, which is a very large group of people on this earth, can join me in having fun for the rest of our life.

For those that haven’t lived with limitations please trust the rest of us for ourselves… We really know what we are doing and try to learn from us.

As for the doctors, please realize your role as healers and think twice when you tell someone he or she has “this disease that is very serious and medicine is the solution” when the persons mind and soul is what should be meditated first.

I have been fighting all kinds of diseases my entire adult life. Despite that I continue “going up”. My promise to myself, and those around me, is that I will take care of myself so that I will be free to do all the things that I am capable of and will thereby have positive effect on others. I hope you will do that to as that is the single most important thing you can do in your life. If you are unhappy in whatever situation you are in, change it.

Following this confession my thoughts and tales on this webpage will change which hopefully will bring in more readers and increased viewings. Thereby my webpage will change as it is constantly developing. Also, I will be more active on this page as I have a lot more time on my hands.

If you want to participate in my quest to become a better person, live life to the fullest and have positive effect on your environment, please contact me through this webpage or through e-mail, agustkr (at) gmail (dot) com. Also if you want to support me, financially or with your ideas, please be in contact.

Sincerely and with hopes of a brighter future.

Ágúst Kristján Steinarrsson – Life enthusiast

P.S. I quit my job recently and have a lot of time on my hands. That is a radical change and I am excited to spend this time on fun things.

P.P.S. I guess the following video sums up what I have been going through. This is Jack Johnson describing how important it is to actually break down so that you can breath in and enjoy the scenery. Thats where I’m at right now – enjoying the scenery and excited for whats to come.

Mustache March is a venue that is held here in Iceland throughout March. The venue focuses on men with cancer and has developed into something really great – as it encourages every living male in Iceland to grow a beautiful mustache. By having one you are helping raising awareness for men with cancer.

The great thing about this one month venue is that it is fun. I mean – it is really fun to be “allowed” to grow an ugly mustache and to know it is for a good cause. Also, almost everything related to this venue is focused on humour which is, I believe, a new approach to dealing with cancer,  which I really like.

I have been lucky to be a part of this as I:

• Have grown a big mustache and if I can fund raise 100.000 ISK I will dye my mustache white on the 1.st of April – see more here (Icelandic)
• Participated in a conference as I was the “conference manager” (can’t find the right translation).
• Held a presentation about my adventures for a cancer group in Akranes, a small town near Reykjavík. I hope to do more as I enjoy meeting people that are inspired to get the best out of life.

So in the spirit of mustaches and humor I include this pic, of me, my daughter Hekla and my beautifully decorated mustache.

This just in.

Next August I will be holding a presentation for american ostomates – on the national UOAA conference, which will be held in Reno. My presentation will be about my adventurous life with ileostomy and view on life where I hope I can continue to spread the word about fun and adventurous life with ostomy. It will be a great experience to meet up to 700 people with similar experience and I am greatly honored to be a part of this.

If interested, you can see information abut the conference here.

I am hoping to make an adventure out of this as well as the Yosemite National Park is the mekka of rockclimbing in the US – with up to 1000 meter (3.300 feet) vertical cliffs. I will probably not have time to do any real climbing but just the sight will probably be amazing. Below is a video from this place, and you will hopefully see that this place is a natural wonder. (the big cliff in the beginning is Half Dome, a famous climb)

Regarding other plans for this year it is unlikely that I will do any extreme challenges like last year. I will however probably travel to France with my family where I hope to learn to surf, along with “typical” touristic stuff. I also plan on climbing a ~400 meter (1300 feet) vertical cliff in the north of Iceland, which about only 10 teams (20-30 people) have climbed so far. If I do that, I will have to prepare well.

Other adventures will hopefully appear randomly and if they will – I will embrace them and enjoy them.

This year has however started with a very tight work schedule leaving little time for activities. Hopefully that will change soon.

I did a presentation for the Icelandic Ostomy Association yesterday where I showed pics from my trip to the Alps along with other (hopefully) interesting stuff. At the end of my presentation, I played this video which showed what I’ve been up to for the last +2 years. That is, showing all the amazing things I’ve been able to do, thanks to the freedom and improved health I got after surgery.

The video is in a “timely order” that is, starts with pics from hikes that I started taking 2 months after surgery and ending with pics from a hike I took just a week ago. In between there are all kinds of adventurous stuff, pics and videos, that I hope can be inspiring for other people with stoma.

After these two years of adventures I truly believe that having a ileostomy does not have to limit ones life, it only takes a strong desire to enjoy life and maybe a childish optimism.

Page Update: After I finished documenting my trip to the Alps and publishing it here I somehow needed to take a break from the webpage. Now, almost two months later, I’m back and plan on continuing telling tales of my adventures, big and small. Also, I will continue writing about my thougts and experience related to my life with ileostoma. I don’t know how frequently I will post something here but hopefully something new will arrive every other week.

I also rearranged the webpage so that you can have better access to everything I’ve already put in. For example, all my videos are now accessible below on the right.

Publicity: I have gotten some publicity in Iceland recently, in TV and press. It was part of a publicity campaign that the Icelandic Ostomi Association. was doing. The campaign was made to increase peoples awareness of ileostomy and show them that life can actually be quite good with ileostoma. The TV interview was in a swimming pool and therefore showed more than before and seems to have gotten peoples attention, along with the other interviews.

Also, there will be an interview in Coloplast’s next magazine, in danish, and there is a possibility of more foreign publicity, more on that later.

Below is the video and the press article is here.

(I appologize for the low quality of the video, I’m trying to improve it)

After leaving Zermatt we took off to Italy. On day eight we took a train to Milan where we stayed for one night. On day nine we went to Lecco where we stayed for four days which gave us three days of climbing near Lake Como. We got amazing weather and various types of climbing; some were just ok while others were absolutely amazing.  The last day of climbing turned out to be the best as we stumbled on amazing  rocks which included great climbing, twelve meter high cliff diving and… wait for it.. Deep water soloing! (Deep water soloing means climbing where you have no safety line and if you fall, you fall into the water)

Our last day was one of the highlights of our trip, second to the Lyskamm ridge. The fact that I took dives from twelve meter height, with a ileostoma on my stomach, without any real protection and not having any real problems with it is, I believe, incredible. It showed me once more that the limits that I thought I had were actually only in my mind…

Or maybe I was just stupid and lucky…  But I really had a blast and that’s what counts.

On day twelve I ended the “hyper adventure” part of my trip as I met my wife and daughter in Milan and we started the “family adventure” part which included staying in Milan and the Italian Riviera, visiting Monaco and Nice in France, and ending in London, UK. I was travelling for a total of almost four weeks but it truly felt like two months as it was so incredibly eventful and fun.

My quest for “going up”, which started the day I went to surgery, partly ended on the 11^th of August when I got back to Iceland. During this time I did incredible things that I could have never dreamed about before I went to surgery and even after surgery. I sincerely believe that my desire to have fun and determination to not let my limits stop me are the sole reason I got to do all of these things, which have truly improved my life. Therefore I like to end my final post about the trip with this little message:

Have fun in life and do things that scare you, or you believe you cannot do. You’ll be surprised what can happen.