Vacation...and yet another anniversary

Today it's been one year that my husband's accident happened. At around 10pm it will be an exact year that I saw him fall in a coma in my arms and never talk or look at me again.This date only serves to show me how long I've been living without his hug. Oh, I miss so much talking to him or feeling him. It hurts so much that sometimes I get confused if this is really happening. Still this is very surreal for me and I'm stuck not accepting it happened. I just DON'T WANT to be in my side of this tragedy.

Although this is the anniversary, unfortunately it is not the only time I remember of it. Ever since this day, last year, every single day I go to sleep and I wake up with flashes of scenes of this day at the hospital. It's horrible and I wish there were some kind of lobotomy that could be done in me to forget all this.

Fortunately, I've decided that I should spend this day and some more time with my family. So I've travelled to my country to meet all them, and also my so loved friends. It's not as easy as everyone seems to think it is. I'm not spending the whole day in a hospital with tons of people with alzheimer and other problems. This time, I'm among people that have their lives moving on and I feel sometimes misplaced. I don't know what to be, what to feel! So, I'm trying to organize my feelings about all this. But even having to go through all this "adaptation", it's been good to be here and I will try to enjoy as much as I can, before I go back.

Sorry I didn't have time to think through how I would write this. There's tons of things in my mind and they are all disorganized, so it's hard to summarize for you in a short post. But this is it. Please, send some good vibes for my love today. Thanks!

And finally...

I have no words for today. So I'm copying the post I put in my wedding blog, the day after the wedding.

"What can I say for those who didn't come?
Hmmmmmm, it was perfect, more perfect than any bridezilla can wish!!!!"

But I will never forget the voice of my 7 year-old Godson in a voice message yesterday. While his mother was leaving me a message, he was reminding her to tell me "Happy Anniversary". He sounded a bit sad, innocent, maybe confused, but still he didn't want to leave me alone, just like all the people that contacted me today, somehow. Thank you!

Happiness remembered III

A year ago on this date, we had a big party!!! My husband-to-be have already arrived and we went to my favorite jewelry store for us to buy our wedding bands. Then we spent the following days receiving all the guests that came from abroad. And today, one of my best friends decided to prepare a lavish typical dish for all the "tourists". It was great to see my friends from my country meet my friends from where I was living and also my husband's family. All together, we spent a beautiful sunny day talking in three different languages, eating, drinking and the kids had lots of fun at the swimming pool. All our three flower girls were there and I was being revered by them as I was the queen of the block! I arrived home to sleep my last night as a single girl. I was looking forward to spend the rest of my life with my polar bear, who would keep me warm at night during winter in his veeery cold country. And he was looking forward to sleep next to my cold feet, to keep him fresh.

At this point, I am very sad to see such happy days of my life turn into the saddest. But I'd like to thank very much all my friends that are calling me to give support. I would prefer to remember all this with them in a more cheerful way, if we hadn't had the accident. But I'm glad that they are still here with me. Thank you!

Happiness remembered II

A year ago this date I was trying my custom-made wedding dress for the first time. That means I had already left the place I was living and I travelled to my country, where the wedding took place. Beautiful, simple and elegant. I never wanted it to look like a queen-type gown. I'm not a queen. I just wanted to look elegant. And comfortable! Never like these brides that can't move at the biggest party they will ever be able to throw, right?

Honestly, I wanted to have fun through and enjoy everything I could about all this, but I couldn't wait to start my life with him. A lot of people think so much about their wedding day that they forget to think about their marriage. I guess that's why so many couples end up separating.

This day I also had a very fun bridal party, where the gifts were all nice and sexy lingerie. Not stuff for the kitchen. A bunch of friends that I know since I was 6 years old came in and I had not seen them for the longest time. All these good memories, I have no idea if I'm happy or sad to have them, this is all so surreal to me still. It's like I don't even know what to feel, so I don't cry nor I smile.

Happiness remembered

A year ago, on this date, I was preparing for my last day at work. A job I really liked, but it was part of my "life project" to move to my husband's country. My boss lured me to a surprise "go away/wedding" party with lots of very dear colleagues and wedding gifts. I was happy I can't even describe. My "life project" started getting more and more concrete. At this point, I was living at a friend's house, cause I had sold my condo 4 months earlier. That was another huge milestone towards my life with him.

If only I could go back in time!

Spooky news on a spooky day

It's been a while now that I have decided this. I waited till I had a conversation with the family and best friends of my husband about my decision before I posted this here. The bad episode my husband had in June, when I was far and the doctor called me thinking he was going to have a heart attack, served as some kind of training of what would I do if it happened again. Thank God nothing happened that day, but it was good in the sense that I was able to organize my ideas after going through that.

The doctors now have an order to let my husband go if he has a major complication. They are still obliged to call me and ask to confirm that I want to refuse treatment. In this case, they will assist for him to not suffer before he dies. Of course that all minor problems are being taken care of. Major complications can include a big heart problem, pulmonary embolism or pneumonia. All of these very unlikely to happen any time soon, given his state of health before the accident, his age and the very good hospital he is at.

I'd like to emphasize that refusing treatment is very different than euthanasia. In his case, euthanasia would consist of cutting his food and drink and basically watch him die of thirst and hunger. And this can take up to 2 weeks! The level of electrolytes goes way down and provokes a heart attack. That's what I remember someone telling me a long time ago. But for me, this is provoking someone's death by hunger and I'm NOT prepared for that.

Some people approached me with the idea that what he's living now is not good, it's a torture and that maybe it would be a good idea to cut his feeding tube. It's easy to say when it's not THEM signing a paper that would provoke the death of a loved person and it's not THEM having to live with this decision for the rest of their lives. So, NO, I'm not going to stop feeding my husband, even if this means both of us living hell of earth. It's too hard and too conflicting in my mind.

By all means, this is a place for people to send comments and questions and if you want to debate, please, add your comment, I'm very opened to talk about this.

How creative!

For those who know my husband, this is a painting he made probably when he was around 18 years old, at school of visual arts. It pretty much shows a lot of him there! A sophisticated clown, not necessarily the sad one, but with very good and intelligent sense of humor with a pinch of irony.

I'm back!

My sincere apologies to my very loyal half a dozen readers. It's not that I don't consider you, on the contrary, I don't want you to stop reading me and I want more people reading. But lack of motivation is something that is taking care of my life for a long time now.
But I'm back after a month, where I spent with my friends in the city I used to live before I got married. I lived there for 8, almost 9 years and made very good friends that love to see me when I go visit. Everything was ok with my husband, he kept very stable and well (well? well...), with no scares this time, thank God! As for me, I had tons of moments of happiness with my dear friends. Unfortunately they were just moments. And there is a huge difference between being a happy person and having moments of happiness. I guess that is one of the most difficult things for me to accept, given that I was very spoiled by having a good life and being happy up until my husband's accident.
I alternated moments of happiness with moments of guilt for having fun and having even forgotten my problems, my husband, for a while. And also, many times when I was having fun, I felt I was in the wrong place, cause what I really wanted was to be with him, alive and healthy, in our house. Thankfully my friends are good enough to understand my feelings and not become upset, since they were trying hard to cheer me up.
So, cheers to my friends who had patience and love for me! See you again next May!!

For those who want to try my shoes

Think about the person you love the most. Think about the person with whom you had planned to live the rest of your life together. To have found that was very important for you because you think that man was not made to be alone and you were lucky enough to find the best, the one made for you. And you are sure of that because you would never settle for less just to avoid being alone.

Now think that you are put in a situation where your balanced, rational and strong mind wishes for this beloved person to be DEAD then to be ALIVE. Imagine -- You want your beloved one dead!! Does that make sense? Well, because being alive sometimes if feels like it's torture for him. But he's alive, thank God! And his presence is so strong, he breathes, yawns, does lots of stuff and I can swear that sometimes he can connect with me. Maybe miracles exist. Well, maybe this is what your heart thinks, but you know that he's really not there. Is he??? And to think that some people in this situation can live like this for more than 10 years! etc -- The thoughts change so fast, and for each one of the "scenarios" there's a wave of feelings that go through your heart and mind and I just tried to ilustrate an example of that. Don't forget that the life you planned with this person has just started.

And many times, when you can't find a way to run away from these thoughts, they overflow your mind and almost make you crazy and then you burst into tears, cause you don't even know who you are anymore, cause you don't know what to think, what to do or what to decide and you know that what you think, do and decide defines you. And at this same exact moment, you have nobody else you love and trust to give you a hug and help you going through this moment.

This is me right now (2am Monday, Aug 24th), I know a ton of people that I'm sure would want to be here right beside me, but they are far, so now I talk to my blog.

This is just a little part of the world inside my head, but it's a good begining for those who try to understand what I'm going through. I'm still simmering in my mind a way to explain the whole picture, stay tuned.

Travelling plans

Exciting! I love when I go to the city I used to live before our wedding. First of all because I have lots of friends there and I get to see many of them again. Second, because being there with them and seeing familiar places gives me a sensation that I "belong" somewhere, although I'm fully aware that I don't belong there anymore. It's hard to explain, but it is indeed a good pause.

So, it's that time again. I didn't get my ticket yet, but I'd like to use the blog to communicate that I'll be there for sure from Sep 14th till the 24th. I'll try to come earlier and make my stay a little longer, but still haven't decided. I'd love to meet all of you, so, please, let me know if/how/when we are going to meet. Can't wait!

It's his birthday

Yeah, very bittersweet feeling since this would be the first one we would be physically together. We always treated each other fun and creative gifts to compensate for the distance, but it can never be compared with a real celebration. So I kept thinking the whole day what would we be doing to celebrate, if the accident never happened. More torture!

Epilepsy medication confirmed

Last week I talked to my husband's doctor about the bad episode he had, described in a previous post. He was on vacation at the time and the substitute doctor decided to start him in a medication that treats epilepsy. She explained to me that the majority of people who have brain injuries of any level end up taking this type of medication. And she thinks, by what she saw and what she read in his latest ct-scan and EEG exams, that he has a tendency to have epileptic crisis and that episode was, in fact, one of them.

I didn't post this before because I was waiting for his doctor to come back and to confirm that he agrees with the substitute doctor and that he will continue this prescription. So, it's confirmed that from now on this medication was added to his daily life. In the begining he was sleeping a lot and veeeery relaxed, and now he seems better. They say it takes some time to adjust. Now let's just hope they are right and he won't have such a uncomfortable episode again, cause it's just awful to see him uncomfortable and not be able to know exactly what he is feeling/going through and no be able to do anything.

The brain, again

It's been almost a week that my laptop broke. All of a sudden, it just wouldn't start. And I am so dependent on the internet to find everything, that I had the yellow pages right in front of me and, still, I took some time to figure out how I would deal with this. Duh! I found the shop that accepts my Apple care warranty and they fixed it. They could not pinpoint exactly which component broke, so they changed the whole mother board of the computer.

For those not familiar to the term, the mother board is pretty much where the brain of the computer is, among with other stuff. And just like that (ordering a new mother board and installing it), my computer has a totally new brain. I didn't lose any data, it's all here. If only I could find some crazy research doctor that could do the same with my love...*sigh*... grow a new brain on him and still keep his "data". Brain, brain, brain...why does it have to be so mysterious? Why does it have to be THE thing on us? Why does it have to make such a big mess when it's touched?

Anyway, I'm glad to have my connection to the world back. With the laptop, I can talk to all my family and friends from all over the world with them paying a local telephone call, or I can use Skype to see them. And this is priceless, given that I'm a strange world here. Lots of love from my husband's family and the very few people I met here, but never the same as the love that comes from home.

A walk in the park

There's a very nice park in front of the hospital with asphalt paths made on purpose for the wheelchairs. As today is finally a beautiful summer day with no rain, I decided to ask the nurse to put the portable oxygen on my husband's chair and I took him for a ride. We stopped under a tree for me to make his exercises (to keep him flexible) and I read a little bit. We both felt the wind and the sun and I guess this was good for both if us.

For the ones who care for the well being of my angel, I want to say that as long as there's a good sunny afternoon, I'll keep doing this.

Also I want to say that his lips are way better than the last time the friends all saw him. He is still recovering from biting his lips strongly and non-stop when he had that episode, but right now it's not swallen anymore and the normal color is back.

One of man's greatest assets

I'm still in awe trying to find the best words to describe what happened last week. Two of my husband's great friends had the idea of preparing a litte get-together and have a big group of friends to come visit him at the hospital. Many of them already came here before, but it's tough, given that we are in his hometown, almost 2 hours far from the city he was living for the past 25 years and where he met all of his best friends. I think they also wanted to "live" this together, at least for some hours.

So, they reserved a very nice party room at the hospital and I took care of the logistics to make my husband "portable". He doesn't use a ventilator, he breathes by himself, but he needs to have humidified oxygen being blown in his tracheostomy.

At noon he was ready and his friends started to arrive, with good food and drinks. I can count almost 20 of them and, still in lack of words, I can just say it was very nice and emotional. It's hard to talk about everybody's experience, cause each one was touched in a different way. As for me, I always thought that having good friends is one of the greatest treasures someone can have. And they showed a great deal of love and respect for my husband. These people won my heart! So, thank you for a great time!

I hope that somehow my husband was able to profit from this, he knows their faces and their voices for way too long and he loves all of them. They played all the weird music he loves too. All this information is printed in the left part of his brain (which was not affected). The right side, the one affected, is the one supposed to make the interpretation of what he sees and what he hears. But even so, one will never know, so I just hope he felt good, alive and not alone. In fact, this is something I say to him every day: "Baby, you are alive and you are not alone".

I'd like to ask if you were there, please, send a comment about your feelings on this afternoon, to enrich this post. Thanks!

When too much health is a problem

After this scary episode, I found out that the chances of a person at my husband's age and state of health (with no previous heart problems) having a cardiac arrest are minimal. Still it can happen.

While talking to his doctor here at the nursing care facility we are in, he said that my husband's health is incredible, that he is strong like an athlete, with very good heart and lung conditions, for example. Yes, it's true. His whole life he loved sports, always played and did very well. Besides, he always used a bike as means of transportation and had good eating habits, which kept him much younger than what his birth certificate indicates.

At first I kept the doctor's comments as a compliment. I was always very proud of him for keeping himself in shape and naturally conscious of things that people should normally do to take care of their longevity. But then my mind, as always playing games with me, started realizing that maybe, this time (since after the accident), being super healthy is actually torturing him, keeping him alive and strong, and I hate to say this, but maybe for nothing. His heart can beat at 195 for one whole day and he can still take it. His imune system seems prepared for any complication.

As much as I have hope, I am also not in denial, I know what's going on. So, I feel really bad that he prepared his whole life for longevity, and right now, longevity means to be alive, breathing, digesting, sleeping, but with no awareness of himself or the environment. With very few chances of ever waking up from this and even fewer chances of any recovery after waking up. With dependency on a huge amount of nurses to keep him comfortable, clean and fed.

GOOD GOD, IS THIS MESSED UP OR WHAT?????

ps.: by no means this is me advocating for people to stop taking care of themselves!

Vacation with a scary ending

This post has more "technical" information about my husband's health situation and daily life at the hospital. I'm using this blog also to inform friends and family about what goes on. But before I start my story, I need to give some background information so you can understand.

My husband has what the doctors call a central fever. The part of his brain responsible for controlling his temperature was affected by the bleeding and very often his temperature changes. He takes Tylenol 4 times a day to help a bit, but it's not enough. So every once a while, his temperature increases and that causes an increase on his spasms and the heart rate too.

Nothing scary until one week before I left on vacation (around mid June) he had a more serious episode of very high fever with lots of spasms and a fast heart rate. It seemed as if he just got back from running a marathon and it wouldn't slow down. I was with him and got very worried. So, the doctor followed up with urine and blood test to make sure it's not an infection that was causing this. And he confirmed, once again, this is just his central fever attacking. Next day he was ok, back to normal.

Since his situation is pretty much stable, I decided to go visit my friends in the city I used to live before getting married. The plan was to stay two weeks cause I had a lot of people that wanted to see me. They represent a big part of my support system and they are far away from my daily hospital life.

Everything was fine until two days before my trip back, when a doctor called to warn that my husband was having an episode of very high temperature, and this was causing a lot of spasms and his heart to beat very fast, up to 195 beats per minute. He was afraid that if that continued for a while, he could have a cardiac arrest and, in that case, he had to ask me if I wanted him to be treated or to let him die. They, of course, would assist with the pain with lots and lots of morphine. Of course I freaked out, cause I was not expecting this type of call so early in this process.

Like the previous time, he got better once the fever went away. But as I heard the description of how it happened, it seems to me that this episode was even worse. He bit the left lower part of his lips for a long time and now it's all swollen and almost black. They gave him morphine, muscle relaxing pills and Valium. Oh, yes, this one was a really bad one.

I cut my trip short and came back as soon as the airline companies let me. What bothers me the most about this is to think how uncomfortable he gets when these things happen and there's nothing I can do. And that these "more scary" episodes keep happening every time he has hight fever. I can only watch and wait, and that kills me.

A great day

Being far from my friends, family and my husband's friends it's not an easy thing when all I do is stay with him at the hospital and nobody comes to visit. And for the past four days it's been like that, so my conversations have been pretty much with the nurses. They are all very nice, but they are busy too.

What started as another whole day at the hospital and with no visits ended up as a great day. Three very good friends of my husband came to see him and spent the day. As I said, we are in his hometown and almost 2 hours far from the city he lived for the past 25 years with his friends. So, as much as they want, it's always hard for them to come. But today, they came and they brought tons of decoration for his room, all kinds of things my husband would love to have around. And they brought beer and cheese that he would have loved too, but these two he could only feel the smell, not the taste. His food is basically a shake of vitamins and everything else he needs and he takes it straight through a feeding tube. Too sad, given that he LOVES to eat good food!

But today is not about complaining, it's about celebrating the visit of these great and talented people that little by little I'm getting to know and to love. And also to thank for the decoration, pictures and the veeeery colourful cover that they brought one behalf of another friend, who already became a good friend of mine!

This is good fuel for the soul, guys! Thanks! 

A sad day

Today it's been 6 months and 10 days that I've been married to the most generous, free-spirited, inteligent and talented person I couldn't even imagine existed! It happened in such a natural way that since the begining we knew we were each others' perfect complements. And this love contaminated our wedding guests to make our celebration a blessed one.

Today also it's been exactly 6 months that, after a stupid accident, my husband fell in a coma in my arms and with huge brain injuries that left him in what is called a vegetative state, where his basic functions work really well, but the rest doesn't. He breathes, he moves some parts of his body sometimes, he open his eye lids, he digests what's put in his feeding tube and his general health state is really good. But the doctors say that the parts of his brain that were affected make him unaware of himself and of the environment. 

I can't even start describing what I've been feeling throughout these six months...what is it to mix in your head HOPE, SADNESS, DESPAIR, ANGER, FEAR, etc...feelings that change every 10 minutes of my life? 

HOPE that he will come back by a miracle or by some new scientific research. I believe in God and that love can make miracles happen. I also believe that there may be someone who is studying a way to recover injured brains and hard as this is, I am trying to look for this research.  

SADNESS to know that the chances of him waking up from this coma are almost zero and that even if he does, he will be a very debilitated and dependable person. 

DESPAIR to come to the hospital every single day to stay with him, to see him alive and breathing and to not be able to do anything for him. Or when I start asking myself why couldn't we just have a family, somebody to love, somebody to loves us and maybe kids.

ANGER to think that he is tied to a health system that gives the best nursing care we could hope for, but on the other hand we are far from having anybody interested in trying anything to recover him.  Anger to think that money comes into play if I wanted to transfer him to a hospital that has good research and is interested in at least trying something. 

FEAR to not be near my support system. For those new to this story, before we got married, I used to live in another country (and I was born in yet another country), so I sold my apartment and quit my job to come live with him. And we never got there. Moreover, he is being treated in the city where he was born, so we are far from his friends (his support system) and far from my family and friends. His family is here, but that is a whole chapter by itself. Sufice it to say that I come from a different culture and I expected more from them, a big but innocent mistake from my part.  

And FEAR of not knowing where my life is going, living this limbo and not knowing how to move on, if I should even move on, for how long should I keep my husband as priority in my life, and what to do since nothing around me (besides him) is familiar. 

I still don't know the objective of this blog, if it's to keep friends and family updated about the pratical things or if it's to reach more people and let me vent about this drama. One thing I know, this is definitely a cry for help, specially if you know of a good research that can be done for him and people willing to help. Send your comments and this will help me format better his blog. Spread this to people that could be interested. 

And thanks so much for your ears!!!