Surfacing After Silence

Life. After.

chronic illness

a heart necklace in place of my literal heart.

I have a lot of coming to terms to do, as far as this chronic illness is concerned.  Yes, I’ve finally started using that phrase with consistency: chronic illness.  There is no denying it.  Today I was exhausted, and I spiked a fever over 100 degrees Fahrenheit. And at first I was confused.  I mean, a runny nose won’t make my fever spike that high.  Then I remembered my cardiologist telling me not to be overly concerned about sudden fevers–they are a sign my body is beyond tired.  (As long as all the flu symptoms and other illness symptoms aren’t present, of course.)

I was reading from this book: Dancing at the River’s Edge: A Patient and her Doctor Negotiate Life with Chronic Illness. (And yup, it’s available on Kindle, too)  And this one quote came up that explained today perfectly:

“The life threatening times come, and then they go away, and then you must brace yourself.  You do not brace yourself for the next horrific death-defying moment.  Instead, what you much brace yourself for is the day-in-day-out wear and tear of it. What really hallmarks a life successfully lived with chronic disease is your ability to keep soldiering through.  The bitter pill is that it is always just a little there, or a great deal there, but the unpleasant taste remains, in your mouth, in your routines, in your soul, and that is the fight we are engaged in for the long haul.  We must not become overwhelmed by the exhaustion of it and the fear of the possible next grave crisis.” ~Alida Brill, patient

This does not contradict my earlier post.  She does not say she has to keep soldiering on by herself.  She has surrounded herself with friends and professionals to help her at any moment, any day.

What resonates for me a lot is the day-in-day-out nature of chronic illness, more than the grave crises.  But at no point does she say that the chronic illness dictates how you life your life.

My life is still just that: MY life.



April 9, 2011 - Posted by | coping, health, heart, recovery | , , , , , , , , , , , , , , , , ,


  1. Big hug. Sorry I’ve not been around or reading. Sorry your feeling so sick.

    Comment by David | April 9, 2011 | Reply

  2. I just wanted to say, I’m glad I found your blog. Its been about a month and 2 weeks since I’ve had my surgery for my ICD to be put in, about 10 hours after I had a black out “episode.” I’m not sure about your ARVD but mine is genetic and my uncle died from it in ’86 and he was only in his mid 20’s. I had no problems before this episode, so it was very suprising. I played soccer since I was about 4, so I have so much sympathy for you and your running, the limited exercise we can do sucks, but we can get through this and live a pretty normal life. To my friends I’m now the “robot.” I’m glad they are up beat about my condition and I believe you have to just have fun with it and not take it “so seriously” if you know what I mean. Just have to live a normal life and God has something else in mind for you. (even though Im not that religious) something good is gonna come out of this, so hang in there girl ❤

    Comment by Shelby | September 19, 2011 | Reply

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