When I was in the hospital a nurse came in and handed me information on living with heart disease. I remember thinking I had a heart attack, I don't have heart disease. The two were in no way mutually exclusive in my mind. What a sheltered world I lived in, huh? I had never been really sick with much more than strep throat or the occasional flu. Carolyn over at Heart Sisters wrote about this phenomenon in her post ‘Healthy Privilege’ – when you just can’t imagine being sick. I could have never imagined this. This was something that happened to other people, not me.
I am in the CCU which I can't believe in the first place, and I know I am looking stunned while this nurse is trying to go over this information with me. As if I had not reached illness overload already I could hardly digest that she was telling me I now had a lifelong chronic illness. (See Post Heart Attack Stun). In my mind heart disease was for old people. Let me tell you that 42 feels really young when you are talking about heart disease and heart attacks. A heart attack was a one time thing; it was over and now I am well and I go home. Wrong--now I go home and take a lifelong regimen of cardiac medications including an anticoagulant, a beta blocker, a statin drug and aspirin. Now I go home and decide how this defines my life.
I came home and decided this was indeed going to define my life and that it would play a large part in defining my life. I was pissed as hell that this had happened to me. I was pissed that it had ruined my 'healthy privilege' as Carolyn calls it. So, never one to sit idle I posted it on Facebook a couple days after I returned home. Even some of my closest friends did not know when I decided to put it out for the world. After working through a whole lot of anger and an extreme fear of dying pretty publicly, I've never looked back. I shout survivor to whoever will listen. If you give me more than two minutes of your time you will know that heart disease can affect you and not just affect you but kill you. Even if you don't give me a full two minutes I will still tell you I am a survivor. I will tell you over and over and I don't care if you get sick of it. Why? Because it will stick with one person and they will call an ambulance when they need to--maybe it will be you.
I have a friend that had a heart attack two years before I did and still to this day her friends do not know. She has a hard time with the word survivor. Hers was not massive, but something she found out about after the fact. She is ashamed she didn't know and ashamed that she let her health get bad enough that she had a heart attack. The funny thing, she can tell complete strangers but she is ashamed to tell those that she knows. I told her to hang on to her hat, I'll make sure she gets comfortable with the term survivor (I know you are reading this girl--you'll get there!) Not to say I haven't had my struggles with this journey but overall I think I've done pretty well.
I think what this shows is there is no right or wrong way to react to a heart attack. Really there is no right or wrong way to react to any serious diagnosis. Each person has to work through the journey their own way. So, if you are new here and you have found me because you are searching the net to find information after your own heart attack, just know that you will settle in. I know the feeling of fear you are experiencing and I know you are pissed that you now have a lifelong chronic illness. I have met enough people that have been through this and everyone handles it differently. Every emotion is valid.
Hi Jodi and thanks for including a link to my 'Heart Sisters' post about healthy privilege here.
ReplyDeleteYou bring up a number of very important points around the differences in reactions to a heart disease diagnosis. I had a similar reaction to yours when I arrived at Mayo Clinic five months after surviving my "widowmaker" heart attack to attend the WomenHeart Science & Leadership Symposium For Women With Heart Disease (highly recommended, by the way!!) Over breakfast at Mayo on our first morning, we did round-the-table introductions, and that's when I started freaking out (quietly of course!)
For example, the women at my table were saying things like: "My name is ___ and I had my first heart attack in 2005, then my second heart attack and double bypass surgery in 2006, then one of my grafts failed in 2007 so I had three stents implanted, etc etc etc..."
I was stunned! Like you, I figured that for me, this had been a one-shot trauma, whew glad that's over with, now let's just get on with it.... Instead, I learned firsthand that heart disease is a chronic and progressive disease, and that our wonderful docs can bypass us, and stent us, and zap our wonky electrical circuits or do other procedures to help us survive, but nothing they do can address what originally damaged our delicate endothelial cells lining those coronary arteries - often years earlier.
That's quite a shocking realization, and very unlike our experiences in acute care medicine.
Once we get our brains wrapped around that truth, along with all the emotional and psychological and mental fallout such realizations inevitably bring, we can move on, as you so wisely say, and "settle in".
As Dr. Stephen Parker, a cardiac psychologist and a heart attack survivor himself, likes to say: "A heart attack is a deeply wounding event, and it is a wound that takes a long time to recover from, whatever the treatment.”
Keep up the great work here, Jodi!
regards,
C.
Thanks Carolyn! I'd love to go to the WomenHeart Science & Leadership Sympoium For Women With Heart Disease someday! I'll have to look into how to make that happen!
ReplyDeleteWhen I started doing my own research and I found that once you've had a heart attack you are at a much increased for a second I was stunned. I found you and Jen online and started reading so many other stories through your blogs. I still hardly thought the lifetime illness applied to me. Once again, that happens to other people! I did so well afterwards and I thought that I was kicking heart diseases butt. Then I had to go back to the cath lab because my stents were failing and I could hardly believe it when I was told I had barely escaped a second heart attack. This was when the true reality that this would be a lifelong disease hit me like a ton of bricks--8 months it took to really come to this realization.
Dr. Parker is a very smart man! It is indeed a deeply wounding event!