Well Spouse post

I have kept this blog focused on Bruce and his disease, but as you know, the toll this takes on a family is overwhelming. I would like to thank everyone for thinking of me and what I go through in this long process. A friend emailed me something last week that I would like to share...Especially to the several wives who read this whose husbands are dealing with same situation as Bruce, and also to someone very close to me whose husband has courageously battled cancer for over a year now. It was just too poignant not to share. All I could find out about the writer is that it's a woman who wrote a book about her husband with cancer.
"What about the person who is not the one with the illness? yes, how about me? How am I doing? No one ever seems to ask. A selfish thought when I am not the one who has the disease. No, my pain doesn't have a medical label, my fear is abstract, there isn't any medicine that can take it away. It is the pain of sharing my life, my love, my hopes, my dreams, my future with someone whose life seems to be shattered and all those things stolen from him. How am I doing? Well, since you asked, I'm scared shitless. I'm scared to love all the way now, because the loss is too great. I'm scared because I'm real angry and I want to scream out to God, "Are you nuts?" Or to my beloved who is sick, "Snap out of it and make it go away, " or to friends and family who have become distraught over trivialities, "Shut the hell up, you don't know how lucky you are." I'm scared because my own life and love, and hopes and dreams and future are so connected to my love's that I wonder what will become of me. I'm scared because I see and live the reality of what is and still reach for the idealism I've always had and wonder if I'm fooling myself. Maybe you could say a prayer of courage for me, so I can continue on and care." ~Anita Tejedat


  1. Hey Amy - I said a prayer of courage for you. Jason's cancer treatment was so short compared to how long you have been fighting Bruce's pkd - my fear didn't have as much time to grow. Hope you can get some easy times for a while.

  2. ok wow.. that hit close to home and made me cry.. because 'scared shitless' couldn't be a better explanation!
    thanks for sharing and hugs to you.. i know how much this sucks... it's hard not to have 'those thoughts' of 'what if'.. actually before he started to get worse this last year, i already had those thoughts because of his job.. but i've learned to join together with people who are in my same boat and that seems to be what helps me make it through all the craziness! .

    that's one of the reasons i was soooo happy to have found your blog.. because you are the first person i came across that has a husband with pkd.. they're the same age and we both have young boy children! so... thanks for putting your life out there on your blog because you've helped me and motivated me to start blogging too!!!!!! :)

  3. I just saw this blog post today, and wanted to say, "you are not alone" -- and "when one is sick, two need help". Those are the twin mottos of the Well Spouse Association, and our group offers support to husbands, wives or partners of people with chronic illness and/or disability.
    Please check us out here: http://wellspouse.org or my blog here: http://www.carepages.com/blogs/lifeofwellspouse/posts
    I'd be happy to join your blogroll also