Even dood door Fokke Obbema

Via een lotgenoot kwam ik terecht bij het prachtige stuk geschreven door Volkskrant journalist Fokke Obbema: 'Even dood: leven na een hartstilstand'. Heel helder en met humor beschrijft hij zijn hartstilstand, de medische kanten ervan en vooral de ongrijpbare kanten van de menselijke geest. De lagen van identiteit en zingeving die door zijn gebeurtenis worden aangeraakt en de zoektocht die daarop volgt. Leven met de waarom-vraag? Leven met het idee van toeval. Pech? Nee, er moet een oorzaak-gevolg zijn! "Komt u over dertig jaar nog maar eens terug!" Zo herkenbaar.

Leven met pech...leven met het niet kennen van de oorzaak, omdat de medici inderdaad fantastisch werk doen, heel erg aardig zijn, maar vaak ook "maar wat doen", "we vermoeden wel iets, maar weten nog lang niet hoe het werkt", hoe daar toch woorden aan te geven en een weg in te vinden? Na mijn hartstilstand, borstkanker I, de dood van mijn dochter door Acute Leukemie, borstkanker II...pech? Genetische oorzaken...onbekend..."kom over dertig jaar nog maar eens terug"...

Ik heb behoefte om antwoorden te vinden op de waarom vraag en tegelijkertijd heb ik er totaal de energie niet voor om me ermee bezig te houden. Gelukkig kan ik lachen om een oud-collega die zei: "Nu weet ik het zeker: jij was in je vorige leven een afschuwelijke dictator! Dat kan niet anders!"

En dus hobbelen we maar voort...hoef ik het van mezelf niet allemaal te weten, niet allemaal te voelen, hou ik het leven heel erg klein: de zon, mijn familie, vrienden, lekker brood en een mooi boek. En tussendoor de tranen, het koesteren, voorzichtige blikken richting een toekomst, mijn dochter naar de middelbareschool zien gaan, hoop dat ik ooit mijn kleinkind kan vasthouden. Misschien allemaal een ego-kwestie zoals Jan Geurtz zei, ik wil het graag geloven. Voel ook dat daar wat in zit, dat het ergens wel klopt. Maar ik ga eerst nog rouwen, koesteren, vasthouden...ik ben nog niet klaar om los te laten...

Ventricle vase

I have a new love: Pinterest! I also have an older love: Glass objects! I also have a new relationship with my heart as many of you know, and guess what I found on Pinterest this morning:

Ventricle Vessel by Tsunami Glassworks
made by Eva Milinkovic



Stunning! I guess I should own one of these....it makes it a lot easier to embrace my SCA, seeing the heart as such a stunning art object! That's what I would call: turning hell around into beauty.....perhaps the insurance companies can be talked into giving all us SCA survivors something like this next to the ICD's....

My happy second birthday



Gisteren ben ik twee geworden. De week ervoor 38. En wat een verschil met vorig jaar, in hoe ik me voel en hoe het met me gaat. DE dag was vorig jaar nog heel beladen. Dit jaar merkte ik dat het wel ergens in mijn gedachten en lichaam rondzong, maar het eiste niet veel aandacht op. Het begint te zakken, HET verhaal. Toch vraag ik me nog steeds af of ik er iets mee moet. Hoe verhoud ik mij tot alles wat er gebeurd is? Steeds meer zakt het allemaal: het is gewoon gebeurd. Niet meer en niet minder. Het is gewoon. Het was en het is.


Gisteren op de coach kalender, was het thema: Van Overleven naar Overleveren. Daarin lees ik een bevestiging. Het eerste jaar was overleven, het tweede jaar er één van overleveren, aan dat het gebeurd is. Dat ik de hoofdrolspeler was. Overleveren, met de stroom mee, het laten gebeuren.

Yesterday I turned 2, a week earlier 38. And what a difference in how I feel about my SCA than last year. Back then the day felt really heavy and sad. This year it was ok, just a little reminder in the back of my head. I do still wonder about how to deal with it all. More and more I am aware of a certain shift: from surviving to surrendering. It happened to me, there was no fighting against it, it was there, and now I am here. It just doesn’t get any deeper than this.

Van hebben naar zijn

Voel ik me even bevoorrecht! Zit ik zomaar inspirerende gesprekken te voeren met een zeer moeilijke, maar boeiende doelgroep als aspirant Humanistisch raadsvrouw.

Zo ben je communicatiemedewerker en zo ben je een beetje, zogenaamd, bezig met ander werk.

Het zit zo: ik ben een van die dertigers met een dertigers dilemma. Er zijn er velen waarschijnlijk, maar waar ik mee worstel is: “Wat wil ik later worden als ik groter ben?” Nu ben ik al groot en dat realiseer ik me steeds meer en ik moet nog dertig jaar werken. Wil ook nog dertig jaar werken. Werken, zin geven, met mensen bezig zijn. Zo kwam ik laatst weer uit op de Universiteit voor Humanistiek. N.a.v. van een open dag bedacht ik me dat bij mijn werkgever ook een humanist rondloopt en ik daar dus gewoon kon aanbellen. Zo gezegd, zo gedaan en ik werd meteen enthousiast uitgenodigd om een dag mee te lopen. En ik vind het nu al helemaal inspirerend. Dit ben ik!!!

Zo moest ik, toen ik vanmorgen binnenkwam, even wachten totdat hij klaar was aan de telefoon. Geen probleem want de boekenkasten in deze kleine gezellige kamer staan vol inspirerende titels als: ‘Dichter bij het onuitspreekbare’, ‘Rituelen in religieus Nederland’, Henri Nouwen etc. En aan de muur hangt bijvoorbeeld dit:

(…)

Hebben is hard. Is lichaam, Is twee borsten.

Is naar de aarde hongeren en dorsten.

Is enkel zinnen, enkel botte plicht.

“Zijn is de ziel, is luisteren, is wijken,

Is kind worden en naar de sterren kijken,

En daarheen langzaam worden opgelicht.

Ed Hoornik, uit Het menselijk bestaan.

Dit is mijn weg. Is dit mijn weg? Is het voldoende om naast mijn werk inspirerende dingen te doen of wil ik inspirerende dingen in mijn werk doen?

Dit lijkt me een teken: naast me ligt het Open Kaart Spel van de KRO. Ik denk net: “Laat ik een kaart trekken.”

Dit is ‘m:

Hart en Ziel

Voor je ligt een enorme uitdaging. Je hebt al besloten om ‘m aan te gaan. De vraag is alleen: hoe? Je kunt kiezen: je vervult deze taak uit plichtsbesef omdat het nu eenmaal moet, of je stort je erin met passie en geeft jezelf helemaal. Doe jij alles met hart en ziel?

Ph. Bosman: Wat niet uit het hart komt zal een ander hart niet raken 

At this moment I am trying to figure out what to do with my job. I like what I do, but there is something calling me. Today I had a meeting with a humanistic counselor at work to see what a day in the office is like for him. It was super inspiring and I might consider doing another Masters to get there myself. In Holland these people are allowed to work side by side with pyschologists and psychiatrists in hospitals or the army or in prisons. They combine philosophy, with knowledge of psychology and counseling skills. More about this will follow. 

There was a card game with (spiritual) questions on the desk and I decided to pull a card. It read: What doesn't come from the heart will never touch another. 

A challenge to let my heart lead the way....how symbolic is that?!

Heart Energy

Twice a year I have to go the the hospital to have a check on my ICD and it's data. This last Monday I took the train to the AMC Hospital in Amsterdam and was met by a very friendly nurse who followed the procedure.
After that it was a long wait this time to meet THE Professor. He looks like a professor, he talks like a professor....and you can take it both ways. On the one hand I can tell all his cells in his body are absorbed with knowledge about the heart. He breaths cardiology, goes to bed with it and wakes up with it. On the other hand it is hard for him (and many with him) to 'translate' his knowledge to a normal level for a normal person like me.
I feel that they take my case seriously. I know that they know who I am, I am not just a number over there. But for me my SCA is about emotions, for them it's about a mechanical thing, like a car that stopped working.

Another hard thing is that every time I go there I feel that there are new 'diagnoses', new suggestions to be made. This time the professor said to me: "You do have some rhythmproblems, but these ones are not life threatening. These ones won't prevent you from turning 100 one day. These ones don't have anything to do with your SCA!"
"Huh...??? What are you saying, what does that mean?"
"Well we don't know what caused your SCA. We still don't, but it could have been a virus on your heartmuscle for example and not so much some genetic failure in your heartrhythm. The problem we have now is that your ICD does not know the difference between these rhythm problems and 'real' problems with your heart. So this causes some 'noise'. We will talk about this in our team and we may be able to treat you a bit better with some other medication. Treat, not cure."

I walked out the hospital 5 minutes later, feeling totally empty. All the energy was drained from my body. Why, I am not sure. This 'diagnoses' are not completely shocking, although I did think: "but this means that I might have (had) two different things". Being there just makes it real. Super real. For many days on I can 'forget', feeling almost 100% recovered now. (Spring and Summer coming definitely helps to gain more energy) My next visit to the hospital will be different: 1) my husband will be joining me, 2) I will take a day off and do something FUN to get rid of the more negative energy and regain some of my joy for life!

Medische update

Gek hoor, naast alle dagelijkse dingen: genieten van de kinderen, gewoon huishouden, weer steeds meer werken en klussen aan ons huis, is er ook nog steeds het medische circuit waar ik voorlopig nog in zit. Ik moet ergens niet vergeten dat mijn hartaanval pas 7 maanden geleden was; het voelt echt al veel langer terug. Bovendien vergeet ik soms haast dat ons leven werd opgeschrikt door zoiets groots. Hoewel: vergeten is er niet echt bij, het zingt altijd wel ergens op de achtergrond. Maar omdat het dagelijkse leven gewoon zo snel gaat met zoveel dingen erin, neem ik niet altijd de tijd om stil te staan.

Een paar weken terug waren we in het AMC. Eigenlijk kunnen de artsen nog niets zeggen, behalve dat ze bij het genetisch onderzoek geen Long QT 1 en Long QT 2 hebben gevonden. Er is wel heel duidelijk iets mis met de elektriciteit van mijn hart en het lijkt ontzettend op Long QT 2. Voorlopig zitten we dus nog op de weg van dit syndroom en de verwachting is dat aan het eind van de zomer het onderzoek kan worden afgerond. Dan wordt ook gekeken wat we met onze twee kinderen moeten doen. Kijk, als er bij mij genetisch niets gevonden wordt, hoeven zij ook niet getest te worden. Maar er is wel duidelijk iets met mij aan de hand, wat ik kan hebben doorgeven. Dat is voor ons als ouders heel erg spannend. Ergens hopen we gewoon dat ze bij mij een defect gen vinden. Dan kunnen ze vervolgens de kinderen ook zoveel beter onderzoeken. Nou ja, afwachten dus maar.
Over een week krijg ik nog een inspanningstest en nog een echo van mijn hart. Dan nog een bezoek aan de revalidatiearts en de neuroloog. Ondertussen nog contact met de bedrijfsarts, dus genoeg bezoeken, gesprekken en onderzoeken die ons eraan herinneren dat er wel degelijk iets ergs is gebeurd. Ik weet nog niet goed hoe ik me er toe moet verhouden. Ik voel me namelijk helemaal niet ziek. De vermoeidheid van de afgelopen maanden slinkt dagelijks. Ik zie er gewoon helemaal normaal uit. Het ziet er naar uit dat alles weer gewoon kan worden. Maar daartegenover staan nu nog een paar 'maars'. 'Ik voel me niet ziek, maar ik heb wel degelijk wat.' 'Ik zie er goed uit, maar...' Soms best lastig om mee om te gaan. En omdat de toekomst onzeker is, in de zin van dat niemand kan zeggen of mijn hart ooit weer op hol slaat of wat dan ook, kan ik het verhaal van mijn hartaanval niet afronden. Ik kan niet zeggen: "toen werd ik ziek, maar nu ben ik weer genezen en dat is zo en zo gegaan." Nee, het verhaal blijft en wordt steeds vervolgd. Nogmaals: ik weet nog niet hoe ik me daartoe moet verhouden. Het maakt me in ieder geval soms heel verdrietig. Dan voel ik me gewoon soms zielig. Hoewel ik me over het algemeen gelukkig kan overgeven aan het leven weer en het gewoon kan oppakken. Wordt dus vervolgd.

A few weeks ago I went to the hospital. The doctors still can not say much about what is wrong with me. There is something wrong with my heart, but it is still unknown. I am getting more tests soon and will see some more doctors in the next few months. In the meantime I am picking up my old life again. Working, taking care of the kids, seeing friends and all. Because things go back to normal so easily I forget many times that this is not to be taken for granted!!! I did crawl through the eye of the needle. I still don't know how to handle all this. I will never get better. It will never go away. That is big. I am worried about the health of my two children...Big Sigh...Not easy...
To be continued...

Merry Christmas Everyone

Merry Christmas my dear readers!

Today we had a good first Christmas day with family coming over for dinner. The sky was blue and now, as I am sitting here, writing, the snow comes falling from the sky again. It is so pretty! Adding to the pleasure is our warm house and cozy living room...I like winter, but I am not really into the cold that much.

These last days of the year also make me think of the year behind us. And man, what a year it has been! But even though I am looking back, I am more and more aware of how my heart attack has fueled some new things for the future. Nothing really dramatic, but I can tell there is something shifting inside. I can only feel it every now and then. When I am not too tired and not too afraid, or busy with trying new things, like working again.

I can tell that, after things get back to normal a bit, I have reached a new level. Not necessarily higher or lower, just a little different. I am way more aware of the fact that we have to live Now! That some people need (and let not spare myself: I need it too!) a kick in the butt sometimes! Good lord...all the worrying about all the little things...makes me impatient.
I can tell that I let the world hear my voice stronger than before. The people who know me, know that I am a bit introvert, sometimes a bit shy. These past weeks I found myself being a lot more assertive in stores for example. And the best part of it: without feeling too self-conscious or guilty of whatever. I feel like: who gives a &%$#!

Also I feel a lot less concerned about things needing to be a certain level. "Christmas dinner for 8 people?" "Let's keep it simple and easy". "Cleaning the house?" "A bit here and there will do!"
Perhaps it is because the articles and books about 'mindfulness' that I have been reading. Perhaps all the words are sinking into my subconscious and do some work there...I don't know. Fact is: I like life a lot better, living it the simple way.

That's also what this picture is about for me. I came upon this Maria statue on a cemetery here in my hometown. It reminds me of how we are all connected. I see a mother of ancient times and am reminded of the fact that there will be mothers in centuries to come. It is all about caring for each other, loving each other, loving life, living life, treasuring the small and the grant.

It tells me how we are all embedded in the great embrace of Being.

Meeting my rescuer: Part two

A few days ago, I got a pleasant visit from another rescuer: a Motor Cop who was at the scene very quickly. He was wondering about how I was doing so he drove by for a little visit. I must say: I really appreciated this. He told me he had done CPR many, many times before, but my story was one he kept thinking about. Simply because I am so young, with two small children.

Another part of the story apparently keeps a lot of people wondering: During CPR I kept coming back to life a little. My skin tone got a lot better and my pupils grew larger and smaller. Nobody seems to understand why this happened and what this all means. Perhaps I need to ask my cardiologist.

What's important for me, is to feel, really feel, how many people cared for me. Worked their best for me! It gives me (extra) faith in human kind!

Meeting my rescuer

A couple of days ago I met one of my rescuers. I had been told that two people did CPR on me, a man and a woman (B.). I met the woman this Tuesday evening.

I had thought a lot about the people who were there when it all happened. Because we live in a pretty small town I realized that we could all run into each other in the city center. One of the first days I spent by myself I went for a walk. This woman came up to me saying she was so glad I made it. I didn't recognize her, but it turned out she works in the hospital bringing food to all the patients. She had seen me for a few days and heard my story and was really impressed. It was really good to talk to her and to be able to get a fuller picture for myself.

The man (a volunteer fire fighter) who helped me told the police that he was alright with the situation and he didn't feel the need for further contact. The woman agreed to meet me right away. It was so good to see her. It wasn't emotional or anything, a little awkward perhaps, but really nice. She told me about how she had taken first aid classes for years, also because she works at a daycare. She was so grateful to have been able to use her knowledge. But she also knew only 9% of the people who get CPR this way make it alive. For her it was really important to see me, to know I am alright. Last week we passed each other biking, at exactly the place of my accident, but she didn't want to stop me then. And I didn't recognize her yet.
(Funny thing: for both of us it was the first time we biked by The place!)

The evening of my accident she was a little late when she left work. She jumped on her bike and passed me just a few minutes after I fell. A guy (E.J.) who was on the scene first knew her pretty well so they (and a few more people) were talking about what to do. She then noticed I stopped breathing and started doing CPR right away. Then the fire fighter came out of nowhere and, almost like a team of professionals, they all did what they had to do. How lucky can you get?!

B. and I talked about how strange it is to be brought together by something like this. She is my age. We could be friends. She saved my life! I tried to say thank you. She tried to say your welcome. But words couldn't express what we felt.

I realized that she was with me during a very intimate moment in my life. There are just very few moments like this. When things are (literally) naked. Touching the fundamental things in life. I felt like this when I gave birth. But being close to someone dying is also very intimate.
I remember when my grandfather was on his deathbed; we only talked about things that really matter in life. All the unnecessary words, feelings and emotions just withdrew.

I also realize that life goes on. I can't always think about the accident or about how lucky I have been or about how there have been angels all around me that day.
Today one of my best friends came over and we barely talked about the accident. We talked (during a fantastic lunch) about our children and the upcoming birth of her second girl. It was great! Slowly and step by step I am moving forward!

Just a few words

Today, five weeks ago, I got a heart attack. I survived, but she did not. Just a few houses down the road she was a mother like I am. With two kids, just like us. With a husband, family, friends, just like us. With an insanely beautiful house, just....not like us, not yet anyway.
A few words to commemorate her.

Last year on October 18th I told my husband that I would test drive the car we got for a few months from my parents in law. So I drove around a little only to return an hour later, with the street full of police cars and ambulances. We didn't think that much of it; probably some people who got drunk and in a fight while going to a club or so....

A few days later my friend L. was over for a nice afternoon with latte's and talks when we saw a funeral procession going by the house. It made us fall silent for a while and talk about life and death a little. Then the 'home town newspaper' fell on the doormat and then it hit me.
She died. I didn't know her personally, but her name was almost like mine. Her age almost like mine. Her living situation almost like mine. And it gave me a lump in my throat. I thought about her quiet often during the weeks following the news.

Fast forward to late august of this year when I hit the pavement. Tons of people sent me cards and came to visit. So did my lovely aunt and uncle last week.
We were having coffee and were talking about the whole situation when my aunt started telling about this woman she met a few weeks earlier. Her husband and my uncle (and a bunch of other people) used to study together in the 60's and 70's and once a year they meet for a day. This woman told my aunt that her daughter had passed away last year, all of sudden, just gone in her sleep.
My aunt mentioned her name. Mentioned her age. It made me hear an alarm bell in my head, so I told her about the woman in my street. After which it all turns out we were talking about the same person. And it also turns out that she probably had the same kind of condition that I am having. Probably, because the doctors can't test her to be sure.

The past few days I have been thinking about her again a lot more. Trying to grasp our stories. She died. I didn't. That kind of stuff. But I can't grasp it. It is as it is. I wrote her a letter in my journal this afternoon. A letter from a mother to a mother, a wife to a wife, a woman to a woman. I think I don't really believe in a plan from above. In something 'meant to be'. Like 'she left us for a reason'. And if so it must have been involuntarily.

I will try to live my life to the fullest. Do the best I can. And to think about her every now and then. Her story makes me remind myself of the fact that there was an angel on my shoulder. That whatever is out there didn't want me yet. That I am given some extra days on this planet. GRATEFUL is how I feel!!!

Update: life with an ICD

Quiet a few people ask me how I am doing after my heart attack. Thank God I can honestly say that I am doing better and better every day. The tiredness is slowly going away, so I have more energy to do some fun things in and around the house. Like decorating a bit and making photo-albums of my two girls.

Last week I had another EEG of my brain (I didn't look like the guy in the picture though). It was hard for the assistant to get all the electrodes in the right place due to my very thick hair. I helped along as good as I could and we had a bit of a laugh about it all. At first glance they told me it looked alright and I am seeing a neurologist about this matter in a few weeks.

A few days before there was a meeting with the rehabilitation doctor. I had a million question to answer about whether I felt over emotional or the opposite etc. He said I am doing extremely well considering the time between the accident and the appointment with him. I just gotta ' keep calm and carry on' and see how I am doing as I go along.

I also had a talk with the medical officer about getting started at work. He was very reasonable which made me feel a lot more relaxed. I had been dreaming about this doctor being a total jerk wanting me to get started full time right away. We decided to meet at October 25th and then from there on see what I going to do.

In the meantime I am enjoying all the lovely cards I got. The second chance there is for me in life. Now that the 'cloud of tiredness' is gone (almost) I feel the need to dive into books, to indulge in ancient wisdom, to cherish good conversations with friends and with strangers, to embrace life as it comes my way. To WRITE. I need to write a lot more!!! I say this in CAPITAL letters to remind myself what I seem to forget to easily!
Talk to you later!

Little update about my life....after

I have been home for more than a week and I am doing pretty ok. Feeling very tired is sometimes hard, but when I just keep things calm things are fine. My wound has healed very nicely and the ICD is hard to notice in my body. So I am not complaining.

I have been thinking a lot about what has happened. Michiel, my husband, told me more and more about the evening and about the first night after my heart attack. That was hard to hear. Apparently I looked a bit epileptic and I didn't recognize anyone. Can you imagine? It drives me pretty crazy, knowing that he has seen me like that. That my mom has been standing by my bed, not knowing whether I would make it till the next day. Not knowing if I could ever talk or walk again. Michiel told me that at one point he just had to leave the room. I feel so sorry for him! It must have been horrible. Then I think about my mom, hearing the news and racing to the hospital. Not knowing what she would see. She and my brother has been there as well. Oh my God! Thinking about it makes me cry!

Am I weird about thinking more about my mom in the first place than about my children? They could have lost their mother, which drives me insane thinking about it. But my mother could have lost her child, that makes me so incredibly emotional. Thinking about one of my daughters in the hospital, me standing by their bed, not knowing about what is going on.......it must be the hardest thing in life to loose a child. Thank God I am still here! I feel very blessed! But I don't have this ' I am going to change my life around ' kinda feeling (yet).

Maybe I just shouldn't watch my feelings so much and just take them as they come my way. We went to the neurologist and she said that my brain will be healing for about a year. She also advised me to take things slow. Tomorrow we will see a cardiologist. So more information comes soon.

Thanks for all the wonderful e-mails! Love to hear from you all!

The day my life changed forever

Well, my life did change forever on thursday august 26^th. Let me tell you how.

I had worked all day and went home to pick up the kids from daycare. We have a 'bakfiets', which is a bike with a large wooden bucket in which the kids sit. I was biking home and everything went well. Until I woke up in the hospital a few days later.

Apparently I had a heart attack (can you believe it? I just turned 36?!).
Anyhow, I was very lucky that the moment we fell, there were some people who knew how to do CPR. They started immediately and called the police and the ambulance. They were at the scene very quickly and I was rushed to the hospital. I was in IC for two days during which they couldn't really tell what was going on. There were moments when I didn't recognize my husband and I was just screaming and pulling out needles because I wanted to leave. Thank God, after a day I woke up feeling much better and much to everyones relieve I could still talk and walk and move in proper ways. A little bit of my short term memory has been lost, but everyday it gets better. I can read a book now and remember what's in it.

After I was stable, I was brought to a normal room in the hospital. A few days later I was brought to the AMC Hospital in Amsterdam, where they installed an ICD. The next day I went home, with a few appointment in my agenda for the next weeks. The doctors think I have a Long QT Syndrome, which is hereditary. But no-one in my family died young. On the contrary, everybody gets really old. So we'll just have to wait and see. They are doing an extensive genetic analysis.

I feel extremely calm and quiet inside. Sometimes wondering: is this ok? Shouldn't I be crying about my life almost lost? I guess psychologically it comes at it's own speed. I am not scared about all the emotions, but it seems now, that everyone around me is a lot more emotional than I am. Perhaps when things calm down a little, that my emotions will flow.

For now, I am very tired. So I sleep a little after lunch. Today I am going to town, a 15 walk all by myself. Nobody home today, just me, myself and I. Going to have some lunch in a cafe. Enjoying the wind in my hair and the fact that I can sit there by myself.

But I am grateful! VERY GRATEFUL! About the second change I got!