How far can denial really go?

Just when I think Ive accepted my diagnosis and begin to find normalcy or peace with my ICD , I realize Im still in denial. How do I mean? I mean I contacted another doctor that is a “big wig” in the world of Brugada. He asked to see my EKG and genetic test. He confirmed my diagnosis and said the gene mutation I have is a damaging one. I got so upset to read that this morning. Why?? My doctor told me in February. We discussed the dangers of Brugada and I elected to have surgery. I left my EP in denial after my initial diagnosis and sent my results to Dr Brugada himself who said I am type 1 and he agrees with the diagnosis. I went ahead and accepted it and got the ICD. Now I am almost at 6 weeks recovery and another doctor tells me he agrees with the diagnosis and yet Im crushed. Why is that happening? I knew for 2 months now that I have Brugada. Ive had an ICD for almost 6 weeks. Ive gotten stronger and accepted it. Yet, hearing another doctor confirm it today knocks me back weeks mentally. I dont understand why that would happen. I saw what Brugada does. It killed my Dad. Ive read all I can read about it. I know its dangerous. I know its fatal. I know there isnt a cure and you can only protect yourself from it WITH an ICD. So what the hell is my problem? This isnt news to me! Ive known all this for 2 months. I thought I was STARTING to find peace. But actually I think know whats happening. Its called the “that wont happen to me” syndrome! Yes I have Brugada! Yes my father died from it! Yes Im type 1! Yes my genetic test is positive! But die??? Who me??? Get out of here! Thats not going to happen to ME!! I have the diagnosis but cardiac arrest happen to me? Yeah right! Ha ha! Funny joke….

This is classic denial. I thought I was past this but Im not! I can read that its fatal until Im blue in the face! I can recall the phone call in my head when I found out my healthy Dad just died! I can FEEL an ICD in my chest for goodness sake. But yet I dont fully accept why I have it. “its just a preventative, nothings going to happen, Im not like my Dad” Then I stop and think …REALLY, REALLY think! I AM very likely to just die. Yes, Ill be revived but I will still wake up in a daze knowing I just died! Is mankind supposed to have that information? Are we supposed to get second chances? Is knowing this information destructive to your psyche? Do you die of arrest, get shocked back to life and go on living or do you go on living, in a daze afraid and confused and fearful of the next time? I dont know. I guess I will find out someday and tell you…

I know Im rambling but Im just trying to piece this together. Maybe someone else can relate to the ” Yeah, yeah, I have Brugada but Im never going to get shocked” phase of denial. Maybe its my mind protecting me? Maybe we are supposed to be in a bit of denial all the time and only deal with it when it actually happens so we dont drive ourselves crazy or cry every day? I dont know. I know what I have. Ive seen what it can do. I know its fatal. Why am I surprised or in denial? Ill just stop thinking. All we can do is turn our minds off and let our bodies live.So my whole life is dependent on this little machine working? What if it doesn’t work?? Thats a scary thought. Too scary….

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6 Comments (+add yours?)

  1. Bob Landy
    Apr 15, 2013 @ 20:34:46

    Hi BG
    Read your denial message and understand how youre feeling. Had a CA in December last year and an ICD installed right away before diagnosis of Brugada last week from chemical challange.

    I have been rambling last 4 months but in a strange way even though I was hoping it wasnt Brugada now I know I dont feel so bad. All the stuff I have read is that the ICD is very effective almost 100% for a Brugada VF and the chances of having another CA is approx 1.5%+ per year so the odds dont seem too bad to me. I am not looking forwad to feeling a shock, makes me nervous for sure, but I am sure you can rationalize a shock versus almost certain death is an easy choice now we have to face it.

    My dad died a month ago, but not from Brugada, and I had to tell my sister this weekend that she needs to get checked. Life is crappy sometimes but perhaps what has helped me put this in perspective is that someone I have known for 20 years has just been diagnozed with a very agressive terminal cancer and has likely only a few months so I cant help but think, as sick as it may seem, I am way luckier than that! Does it make me proud thinking like that…NO…. but it did help me put my bad luck in perspective.

    Thanks for sharing with us all your feelings and news and taking the time to do that Way to go BG!

    Reply

    • aliciatburns
      Apr 17, 2013 @ 10:12:05

      You are right Bob. We cant lose perspective. Although Brugada is deadly, once you get an ICD, you remove that element and can go on enjoying life. Many people dont have the option to re-live life. Some just get an actual death sentence and its over. For us, we may have a hard time with this but life does go on

      Reply

  2. Mikie
    Apr 15, 2013 @ 12:26:28

    Alicia, I would like to share with you something I learned in nursing school…a long, long, time ago. It comes from a 1969 book by Catherine Kübler-Ross, a pioneer on the processes we go through when faced with dying or any life altering situation. Her model, commonly referred to as the “five stages of grief”, is a hypothesis that describes the stages we go through when faced with some awful reality. A reality that all humans experience at some time. It’s a series of emotional stages…These stages are: denial, anger, bargaining, depression, and acceptance (in no specific sequence)
    I’m writing you about her hypothesis to help you understand that at this moment you have moved from the “somewhat acceptance” stage back into the denial phase. These stages do not happen in order, in fact, you can float from one to the next and back again.
    What you are experiencing is normal in every way…..It’s frustrating because you think you finally made in through a stage, then all of the sudden you find yourself back tracking.
    I believe for you, at this moment, are experiencing a bit of denial again & I read another stage…ANGER. Brugada has turned your life upside down, the nice orderly world you lived in has changed in an instant. You will continue to feel both denial and anger until emotionally you are ready to move on. There is no set time. It will happen when you are ready.
    Try not to be so hard on yourself. Accept that what has happened to you/us was just bad luck….& out of our control. Maybe if you get a chance you can read her book….it may be helpful to you in understanding the emotional rollar coaster you are on right now.
    I tried to make this short and just get to the facts so I hope that this brief comment makes some sense,and I hope that you don’t feel that I was being too “nursey” in my beliefs.

    Reply

    • aliciatburns
      Apr 15, 2013 @ 16:36:57

      Mikie, thank you. It makes perfect sense to me. And I dont mind it at all! My Mom is a proud RN. Im used to it 😀

      Reply

      • Anonymous
        Apr 15, 2013 @ 21:16:13

        Mike is right. All of your emotions are normal and expected. Just take one hour or day at a time. Those will flow into years. God is good. Xoxoxo

      • aliciatburns
        Apr 17, 2013 @ 10:12:55

        God is very good. I got a second chance. Like I said in one of my posts, if you dont take one day at a time, it will crush you. Baby steps…

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