Tough cookie!

A blog always starts in my head, mostly at night; while laying in my bed. Words and sentences fly around trying to connect to one and other. The past few months I have had a lot of thoughts and feelings but I just couldn't put them into words. Chaos in my head, and in my heart. 

The very first rehabilitation training in January 2017, was nothing but confrontating. I entered the battle field in my most 'sporty spice' outfit: ready for action! Introducing myself to the other patients was a little confusing and as soon as I took off my vest during the warming-up, I noticed a sigh of recognition: 'Aha, you are having a dash too?!'. From that moment I was one of the guys. One hour full power. Just one hour and the intensity of the training wasn't very high, as the average age of the people in my group wasn't very low. Time flew by. I can hear you thinking: 'Piece of cake!'. 

After the training, as soon as my bump hit the bench in the womens dressingroom, I felt exhausted. Not only that very first time. Twice a week I had to show my new friends who was the fittest girl in the hospital and every time it took me quarter to half an hour to recharge myself before I could walk to the subway to go home. At home I served myself an easy dinner at my couch. Shivering and shaking, waiting to feel good enough to go to bed. 

Nevertheless, I felt comfortable during the rehabilitation training sessions. The physiotherapists had everything under control, which made me feel safe. It was a challenge to both explore and protect my boundaries. Very carefully I started to feel like me again, I finally had more energy even after working out. I enjoyed time with family and friends, as if nothing had happened. 

This positive feeling got confirmed by my cardiologist, which I saw again mid February. My focus on physical rehabilitation along with the enlightening conversations with a psychologist began to shed off fruit. Cherry on the pie was that I could halve my medicine, and later -if it would feel good- even stop taking them.

While I was busy trying to get up and recovering my life, too many people around me lost their lives. The father of one of my best friends, overwhelmed by cancer. My dear uncle, who suffered from ALS and could just not breathe anymore. Both ladies I shared a room with during my last hospitalization, too old to yet win the fight. Cor, one of the fellow warriors, unexpectedly stopped by his own heart. And a beautiful young woman who made a conscious decision to end her life herself.

My heart hurt. Feelings of sorrow and anger deep within me. Feelings so contradictory to my 'Joie de Vivre', which I felt strongly before. To mourn and to rehabilitate at the same time, not recommended. I began to feel weaker instead of stronger. Unstable. It took time to surrender to my weakness. A physiotherapist and my psychologist helped me with that. Feeling and acceptance is what I am working on now. However, I have contacted my cardiologist a couple of weeks ago. I needed confirmation plus I felt my body was unnecessarily uneasy. Increasing the Metoprolol gave me the necessary relief.

In my very first blog I wrote: "I will be 'under construction' for quite a while.. But I hope to come back: Stronger than ever!!". I am one tough cookie, and of course I came back! The only thing I am not so sure about is whether I want to be stronger. Stronger than before, than ever. I am aware of my strength. It helps me and it also works against me.

I danced through the last few months, with you but often alone. My heart allows me to rediscover my inner self. Instead of stronger, I now try to live more consciously than ever. We all have two lives. The second one starts when we realise we only have one..

Time flies..

I am home for two months already. Home, as in at my parents' place. Recovering from an openheartsurgery is definitely something else then recovering from the flu. My bright pink suitcase, filled with nice clothes; tasty recipes; books and (adult) color books, still untouched. I looked forward spending time with my parents after the turbulent period before surgery. What was I thinking?

Since a long time, I feel dependent again. As a 29 year old I had to rest after showering in the morning, I did not want to wash my greasy hair or even shave the jungle! I was glued to my grandmother's chair in our livingroom, waiting for an other cup of tea, or meal. And then rest again, hoping to feel strong enough to welcome guests in the afternoon. My parents supported me; protected me, but also remained at a respectful distance. Still, I rather hug someone then to be hugged.

I feel reset. 
 [verb ree-set; noun ree-set]

~ Noun

·         - reset - device for resetting instruments or controls 

          - the act or an instance of setting again

·         - a thing that is set again 

          - reset button - a push button that you press to activate the reset mechanism

~ Verb

·         - reset - set anew; "They re-set the date on the clock"

·         - specify, fix, limit, set, determine, define - decide upon or fix definitely.

·         - reset - set to zero; "reset instruments and dials"

·         - set - set to a certain position or cause to operate correctly; "set clocks or instruments"

·         - reset - adjust again after an initial failure.

   

"The thing" (my heart!), that is set again to a certain position to operate correctly; to adjust again after an initial failure, needs time. Where I previously was in charge of my body; and never gave up, I am now stopped by it. Too much effort makes me breathless; too much socializing makes me sweaty; too much noise makes me crazy; too much too much makes me so sad. Too much, too soon. 

It is hard to protect my limits, also really confronting. Especially because I slowly start to look like a healthy woman again, I sometimes forget what I've been through. People tell me I look good; I finally gained some weight; doctors see that I am just as strong. Doron - the dancing heart patient: always ready to perform.

So I could not wait to spend a night in my own house in Amsterdam. The impact was bigger then I expected. The few activities where I was used to, were not enough to survive in the big city. I got lost in 'my own' supermarket which was completely renovated at the time I was gone. Totally exhausted I traveled back to my parents. When I had to sit on the floor in a full train compartment, tears came. My physical disability may not be visible, I feel it terribly!

The big question for me is how my body reacts to the new structure of my heart. After 29 years the two pulmonary veins suddenly run in the right direction; the gab between the left en the right atrium has been closed. My blood flows as it should. But will my body accept this, can I handle it? Are the things that I feel right now just aftereffects of the surgery or am I really changed from a race car to a diesel? If so, then I must learn to live with that. I yearn for guidance, both physically and mentally. I am glad that cardiac rehabilitation has started!

Time flies, not just when you are having fun. I have done little, but I have been through a lot. Healing is an art. It takes time; it takes practice; it takes love. A scar means, I survived. 
I am in good contact with fellow warriors, we make jokes until our sternum hurts from laughing. I am grateful The Dutch Heart Foundation has shared my story on their website, and I am touched that a German dance company has used my blog as inspiration for a new choreography. Positive feelings continue to predominate. 
I dare to say that I am proud of myself.

Home is where the heart is - Part I / II / III.

A few days after 'D-day' I was able to write a next message: 'Alive, and (almost) kicking'.
But as you may have noticed, after that I needed time to focus. Focus on my body, which has had a tough time.

At first I was happy I could leave the hospital on Wednesday, October 12th. I can write a book full of (sad) experiences, I was so ready to leave that 'factory'.
Home is the best place to fully recover. That day started 'Home is where the heart is - Part I'. But.. Could I already handle a two-hour drive to my parents place, without getting nauseous? Could I already climb up the stairs to reach my bedroom, after only one meeting with a physiotherapist? Will my body (and mind) handle the atrial fibrillations, after changing the medication shortly before I left? Besides uncertain, I felt unstable.

Before the surgery, I have had several talks with specialists about the whole procedure. No doubt it would be tough. Though, I am still surprised about the fact that I was the one who had to mention the subject 'complications'. All they said about it was: 'No need to talk about it', 'It mainly occurs older people', 'You are in a good shape', 'Percentage is less than 1%'. I understood what they said.. But what if I am the 1%?

I am glad my parents and I discussed everything in detail. United, we are stronger and wiser. After only one night in my own bed in Dalfsen, not feeling well at all, the doctors from the Amsterdam Medical Center advised me to go to the closest 'First (Heart) Aid'.
The trouble started. On the ultrasound they saw that I had too much liquid behind my heart, causing extreme fatigue and dyspnea.I had to stay. The next day, Friday October 14th, the doctors of Isala Zwolle decided to bring me back to the Amsterdam Medical Center by ambulance, since the surgery had taken place there. Unfortunately (I felt) both hospitals did not agree with each other, so in the end I was send home. Again.

'Home is where the heart is - Part II'. My mother made a delicious dinner, at least I had appetite. That night, a serious atrial fibrillation started just before my ear touched my pillow. Annoying and tiring, but I kept being positive: 'It's part of it!'. Confident but with varying heart rate, I started to make breakfast the next morning. I only remember the moment that I sat down as soon as possible and called my parents from upstairs - Half an hour later I was lying in a hospital bed. It took the doctors a few hours to get my heart rate down: it fluctuated from 170 to 120, and back again. The liquid behind my heart had increased. It was the first time my parents saw that I lost my positivity, I was tired of being strong. I had to stay.

After no progression over the weekend the local cardiologist decided to do pericardiocentesis, a procedure that removes fluid from around the heart. On Wednesday October 19th I already lay on the operating table, pretty afraid of what will happen, when the surgeon decided not to carry out the pericardiocentesis. The risk to touch my heart or liver was too high, because both the place of the liquid as my petite body. I appreciated his decision but of course it was very disappointing. All the time I was in good contact with my congenital cardiothoracic surgeon Dr. Koolbergen as well.

I lost confidence, but I felt taken seriously. Change of medication gave me a number of stable days and my body got a chance to recuperate. When I left the hospital again on Friday October 21st, I was more than ready for 'Home is where the heart is - Part III'.

3 times a charm: the last ultrasound showed a slight decrease in liquid. I am still at home, at my parents' house. Despite the intense feeling of 'up & down', I finally feel progression. Everything takes a lot of energy, even writing this blog.

I promise to be back, as the writer who I was before..

 

Typ tekst of een websiteadres of vertaal een document.

Annuleren

Vertaling voor Het voelde niet als verzorgd werd, alleen door mijn ouders.

Vertaal in plaats daarvan naar Het voelde niet also verzorgd werd, alleen door mijn ouders.

•Alive, and (almost) kicking!

Online again and I am overwhelmed with all the messages (my family and) I received before, during and after surgery. Reading all those kind words helped me a lot: thoughts; prayers; candles; hugs and kisses. Thank you so much! Though, too much to respond (yet). 

The surgery went very well! 

According to my surgeon I woke up from the anesthetic remarkably fast and sudden. I gave him a 'thumbs-up'! I felt okay, but ofcourse I was in pain. I remember I thought about food right away (typically me, haha!). Mostly I was thirsty. Because of my pain score, they gave me painkillers. But those actually made me feel even worse, just aweful. The first medicins made me feel nauseous, the next ones really dizzy. I lost all my appetite and I was affraid to move any part of my body. Because of this, my body had not enough power to start to feel stronger.

As in numbers, I seemed to be totally fine. In less then 24 hours they moved me from the Intensive Care to the Normal Care. Too soon and too big of a difference, in my opinion. I didn't get over the surgery yet so I was not even able to start to recover. Luckely my parents were there to support me with anything.

Yesterdaymorning my heart went into a atrial fibrillation (not unusual after a surgery like this) which made me feel bad again. I decided to try to keep in control of the pain medication a little bit myself: I rather suffer more pain from the wound then feeling miserable. Luckely the dizzyness and nausia disappeared quickly. I ate my first crackers with creamcheese, I went to the toilet all alone and I could finally have a normal conversation with the cute nurses.

Great to feel progression! 

Note to self: 'Step by step. Day by day.'

D-day.

This morning, I got hospitalized in the Amsterdam Medical Center (AMC). Tomorrow morning, Wednesday October 5th 2016, the surgery will take place: D-day. 

I am well prepared: I hugged all my friends and family; I left my home clean and tidy; I have packed as much comfortable clothes as possible + (of course) I brought a touch of pink to the hospital. Most important: I have peace in my mind. I am ready!

The surgery is unavoidable, so let's do this! Even though it is going to be a tough time, I hope to feel stronger afterwards. I am looking forward to rebuild, and I would love to continue my life, which I was so happy with. I promise to take care of my body and my mind.

The next time I will look in the mirror I will not see a different person, just a different reflection.. 

Everything happens for a reason.

All my life I have followed my heart, figuratively. As you may have read before, from an early age I knew I wanted to be a dancer. I've done everything to achieve that dream. I did not think about it, I just did it: I followed my heart. 

Following my heart made me competitive as well. When I was young, together with my best friend Manouk I wanted to make the most goals during our handball games; later I loved to jump the highest during balletclass; I always tried to be the one who ran or cycled the fastest (still do, on my bike in Amsterdam), and all the time I just had to beat my male dance-colleagues with planking.

In the words of William Shakespeare: 'Though she be but little, she is fierce'.

Fierce, not to be confused with muscular. Thanks to my genes and professional dance career, I am physically in shape. Yes, I know. But to me, my health is much more important than my appearance. I take care of myself, which is what you see.

I have many friends, all over the Netherlands; all over the world. We crossed paths, connected. I love all my friends as much as I love flowers, and that's a lot! Though, sometimes it is hard to water all flowers as they are scattered across the landscape.

When meeting new people; becoming friends and falling in love I always follow my heart, my intuition. The intuition's most important role is that it alerts us to the path, people and circumstances that we will uniquely find fulfilling. The intuition is just like working a muscle: it will get stronger the more you use it. Of course one time, like every other girl who is desperately in love, I believed. My intuition was strong, I got loads of negative alerts but love was much stronger. It truly broke my heart. It hurt, and it took a while to get over it. Just today I realized that if it doesn't break your heart, it isn't love. Now I am glad I have experienced this, it is one of the life lessons which makes us stronger. 

I believe everything happens for a reason. Likewise, these heart defects suddenly emerged. As I previously followed my heart figuratively: staying strong; being a perfectionist and sometimes being strict, with myself and also with people around me. I am now trying to listen to my heart literally. 

With help, admittedly. About two weeks ago, I decided to stop working after my grandmother told me something that was just spot on: "Doron, you are consuming your reserves, rather than saving them". Even though I was not functioning optimally, it was a hard decision to make. Deep in my heart I knew it was time to prepare myself for the upcoming surgery.

I am quite familiar with the preparation for a dance rehearsal or performance, but an open heart surgery is all new to me. I assume that it will be a 'once in a lifetime experience'. An experience, as everything will be fine, I would never want to miss. 

Once a dancer. Always a dancer.

 

When TV's were huge and I was small, a ballet performance left me mesmerized. It was 

the first day of 1991 that I decided I wanted to be a dancer. For real. Not with tutu's, 

a childish teacher and silly games. Because we lived in a small village, it wasn't easy to find a proper ballet school. My mother supported me, always.

I started ballet close to my hometown Dalfsen -only once a week as school; friends; Barbies and handball were as much as important to me. After finishing elementary school, I got into the preparatory dance training at The Amsterdam University of the Arts. Every weekend my mom and I traveled for a few hours to Amsterdam, where she explored the city and I learned many new things like jazz dance, contemporary and tap dance. Great, although friends; Barbies and handball took a hit. 

The decision to move to a host family in Enschede at the age of fourteen, was hard. But necessary to be able to combine my pre-university education with the preparatory training for theatre dance at the conservatory. Four years of homesickness, school and dance. Dancing every day, that was what I always wanted. At the conservatory, I fell in love with folklore. I really like rhythm, I am interested in other cultures and my Hungarian dance teacher showed me dances and costumes from different parts of the world. I began to dream about dancing in the International Dance Company in Amsterdam: the only professional company in Europe dancing dances from all over the world. 

Early on I knew that if you really want something, you succeed.

Four years later I moved to Amsterdam to complete the Bachelor of Theatre Dance at the Amsterdam University of the Arts. An internship is part of the program and I participated in the auditions for the International Dance Company (my dream job, remember!). 

Nerve-racking but I got in! When I think of my time in this company, I think of color. Many different colors because of the variety of countries; dances; costumes; colleagues; theaters and emotions. I had the honor to dance here for four colorful years. I learned a lot, developed myself and became even more certain about my love for folk dancing. 

My heart beats like the rhythm of dance.

I followed my heart to Slovakia, as folklore dancing was exchanged for contemporary dancing in Amsterdam. Sl'uk, the Slovak State Traditional Dance Company, was my new home. In no time, I tried to make the Slovak traditional dances my own. Until today, my dear neighbor in Bratislava does not believe that a Dutch girl was dancing in Sl'uk. 

I planned to live there for a year, to extend my professional dance career. It turned out to be three. Slovakia and the folklore culture have been very good to me, but I just wanted to go back to Amsterdam and discover what else life had to offer me.

For the past 25 years I danced through my life. I liked it, loved it, hated it. It hurt: I've had injuries, I have sacrificed.. but I got so much in return! I believe that dance has brought 

me a lot -being strong both psychically and mentally. It will help me to get through this. 

Dance is part of my life, dance is part of me.

Once a dancer. Always a dancer.

* Here you can see me dance in the Sl'uk Anniversary Performance.

Grateful

ˈɡreɪtfʊl,-f(ə)l/

adjective: grateful

1. feeling or showing an appreciation for something done or received.

   "I'm grateful to you for all your help"

   synonyms:

   thankful, filled with gratitude, appreciative.

   antonyms:

   ungrateful

   • archaic

     received or experienced with gratitude; welcome.
   •         "the grateful shade"
2. Origin
   
3. 
   

Before writing more blog posts, I would like to thank everyone. I am overwhelmed with reactions, messages, postcards, presents and hugs! It surprised me, and it actually made me realize what I am experiencing right now. It hit me. I got very emotional. Finally.

It cheered me up as well! Even though it takes a lot of energy, I enjoy my time with friends & family more than ever. I cycle to work, smiling: curious what the day will bring. I eat too much chocolate (way too much!). And the sun, I love the sunshine! 

I've only just got into this rollercoaster, but I am sure about one thing:  I feel so grateful!

Thank you for your words, support and faith.

'Life is like a rollercoaster' - They say.

I always loved rollercoasters. Unfortunately I was the only one in our family, so when I finally passed the minimum height to actually go for a ride, my father sacrificed himself. Back then, we didn't know that I should've observed the other warning sign instead:

This week felt like a rollercoaster. I never felt like this before. 

Last Friday, July 22nd, I got the results as you can read in my previous blog. I was in shock, but at the same time I felt safe. A sunny weekend at home, together with my parents. 

When I cycled to work on Sunday, though. I felt how much energy it had cost me to process what I heard and how uncomfortable it felt to leave the 'safe house'. Now I didn't only have physical complaints, emotionally I felt weak too. As if my body & soul knew it is finally proven that something is wrong: no reason to still be strong.

I am overwhelmed by the reactions I got, I want to thank you all for that. It is great to hear you all believe that I will handle this bump. I believe it too. Today, in any case.
Not sure about tomorrow.

For me, it makes no sense to look back:

*Yes! They could have discovered it sooner: I've had two ankle operations where they heard a heart murmer, but said 'sporting heart'. I was even proud to hear that!

*How? How is it possible to dance at top level with more then one congenital heart defect? 

 I am also very curious!

 *Why? Why did my doctor sent me away every time, saying: 'Doron, you're a dancer. You have a busy life. Stress. You need balance.' Doctor: Listen to my heart. I do too.

I am glad to know my body like the best. Maybe it helps that I am a dancer. I really felt I could not live my life like other people from my age, even after bringing more balance into it. I think I should feel happy to finally know what is going on in my body. Even better: they can do something about it!

I feel sad. Just because of the fact that it is something not nice what I experience, and other people with me. I will be 'under construction' for quite a while, missing out a part of my life.

One day I could make (pretty bad) jokes about it, and again the next day I cried so much. Sense of peaks and valleys.

I feel strong. Even though I have multiple congenital heart defects, I am in shape. My cardiologist told me about the 'Better in better out principe', and I want to do anything to start this process as best as possible. 

Strong is not necessarily positive. It makes me think realistically. I feel tense, anxious. What's to come? When will it happen? Will it be all right? Do I need to live my life to the fullest right now? Working a lot or not at all? Do I need to rush to meet family and friends, to have deep conversations, to eat as much chocolate as possible, to accomplish things from my bucket list? Do I need to consciously say 'Goodbye' to my beautiful home in Amsterdam, when I leave to the hospital? All of this, taking into account that something can go wrong.

I feel insecure. There is nothing physically changed since last week, but all of a sudden my body feels like a ticking time bomb. I am afraid to catch a cold, or to get ill.

Most of all: I am tired. Tired of being strong the past few years. Tired of my heartbeat, which (suddenly) keeps me from sleeping. Tired of all the emotions that I felt this week, and continue to feel the coming weeks. From myself and others.

But yeah, that is inevitable when you dance together.