I was 48 when it hit me (Aortic Dissection type A). Now I am 50, and i have been alive almost 22 months. In two months I am in for my second re-birthday. Sound strange, doesn’t it? Re-birthday? Well ask anyone with our disease and you will understand there is nothing strange about it at all. When the aorta tears, the clocks stop and time re-starts all over again.
Waking up from surgery 2:nd of October 2012 and the days to come, my cardiac surgeon visited me every morning until I was moved to another hospital closer to my home. His last advice to me was to ask for help with counseling/therapy to cope with the anxiety that had taken a firm grip of me. Every second i was so happy to be alive, but at the same so extremely afraid that my heart or aorta would fail and that i would die (again). I was not sure if I really had died, and this reality was something new, perhaps Purgatory. In fact, the way i perceived what had happened and was happening, i could not recognize much from the way i felt and perceived reality before i got ill. This is still the case, by the way, but it doesn’t make me so afraid any more, and I do not think so much about it since I can’t do anything about it.
To cope with the anxiety and fear of death i told the cardiologists in the hospital close to home that i wanted to talk to a psychologist. What i got was as good, it was a counselor who works with patients close to death, both the ones that are about to die, and the ones that will make it. First time we met i could not walk by myself and had to be wheelchaired into a small room in the Coronary Care Unit. This counselor, just by talking and listening, helped me to cope with the anxiety without drugs. She gave me some simple techniques to handle the thought when the fear of death became to overwhelming. One was to take a piece of cloth between the fingers in one hand and rub it between the fingers, and try to focus on the fingers, the cloth, the fabric, the texture and to think about what it was, how it felt etc – to gently move the thoughts away from the thoughts of fear and death. I have been seeing her every week the first year, and then not quite so often another 6 months.
The discussions we had during these 1,5 years helped me to change my way of perceiving myself, the way i thought other people expect me to become again, and mainly to accept that life is right here, it is right now, and there are no warranties about tomorrow or later on. The question about how long will i live, how many days, weeks months will i have before i end up on the surgeons table again, and this time finally pass away – haunted me. I asked most of the doctors in our local hospital, but most of them had not any or very little experience of a type A survivor, and when it came to statistics , none. So i made an appointment with the surgeon who saved my life, Dr Vincenzo Lepore at the Sahlgrenska University hospital in Gothenburg. I went there with my wife to get the statistic, but what i got was the words i needed to hear.
“You have to live right here right now. There are no warranties. Anyone in this room can be dead in three years time from cancer. Stop thinking about this and focus on living”
These words and the help of the counselor in our local hospital was what has helped me to totally rethink my situation and the meaning/concept of life has got a totally new proportion for me.
It is simple. We just make it so darn difficult before we come close to death with all our plans, and postponement of things that we will do later on – since we all perceive life as going on for ever, until we end up in a situation where we all of a sudden understand that life if very fragile and definitely not forever, at least not as we know it here and now.
Sorry , now i am totally exhausted, and can not go on more today. But remember this – do not be afraid or embarrassed to ask for help with the anxiety. You will feel better much faster if you receive help to cope with anxiety and fear of death, living with aortic dissection.
We all share the anxiety and fear. We get it every time when we feel pain close to our heart or in the aorta. By getting help how to handle the fear, we can gradually start to live with it, without letting it cripple us too much. (The photo I enclose show a small pond in Borås in Sweden close to our home. I think it show the beauty of the life-concept in a nice way)
Big hugs from Sweden