Friday, August 16, 2013

What would you do

It is raining today. Rain always brings out the melancholy in me. It makes me reflect and think about things. After seeing my old physio today whom I havent seen in over a year, it got me thinking...We discussed what had happened since we last met and he read through all my hospital letters and reports. I swear - I felt like he was looking at me like I was a dead woman walking. I kept telling him how positive I have tried to be and that the situation sucks total crap but that we still have hope - lots of it. But I could see it in his face - fear. I guess I have become quite skilled at seeing it in people even though most of the time everyone tries to hide it. But how could anyone not be afraid when faced with the unimaginable? I sometimes sanity check with my mother about everything because I can imagine how hard this is for her. She has to watch her baby daughter go through all of this hell, all of this suffering and she can´t do anything about it. She rarely cries in front of me and keeps a brave face most times but I know how much this kills her. I realise now with my own daughter how we as parents do everything we can to hide any pain or suffering from our children. We want to protect them as best we can. I also see denial in others which is by no means a fault but rather a means of coping with a very tough situation. No one wants to go the dark place where the monster lurks and you know what? I get it. I understand and I learn to hold back on voicing my fears to those people. They can´t handle it and that is okay. Then there are some people who have slowly drifted off into the background too as things grew more and more serious and I don´t get angry about it. This is too much for some people and I can´t judge them for checking out. I miss some of them but I understand. Sometimes morbidly I wonder if new people I meet who learn about my story get afraid of getting too close to me for fear of what could happen. Probably a totally unnecessary concern on my part and I am most likely the only one thinking about it but I wonder all the same. Others want simply want to fix things and find themselves going crazy when there is nothing to do but sit and just wait out whatever storm has arrived. I often think of my dear husband and the struggles he endures alongside me - completely helpless and unable to take away my pain or be able to do any of this journey for me. I think it must be awful to just watch the person you love so much struggle and at times completely fall apart. Maybe that is what real love is? Being able to endure tests like this and still believe in yourselves as a couple. I will never forget something he said to me a few months ago when I got sad because I had to stay home and miss an event. He told me that we had the rest of our lives to do all the things we wanted to do together so for right now my job was to get through this. He would be there waiting for me on the other side. And they say romance is dead?

Many times throughout this journey I have been honest about times I found especially tough and I think it scared some of you. I let my guard down and that can sometimes be miscontrued as giving up. Rest assured this soldier will never do that. I am realising that I can´t always be positive all the time and I am finding more and more that after nearly three years of this fight, I am finding it harder and more tiring to hide the pain under a tight awkward smile. I am finding it tougher to play the cheerleader and spin everything in a positive light. It can be so tiring. Emotions in a crisis go up and down with little warning. And I am feeling the pull of the pendulum´s swing more and more. I can feel angry at the fact that some of the best bits of my life have been stolen from me in one moment and then feel motivated to seek out the pieces that still remain and put it all back together again. It is all so fluid and changes constantly.

When thinking of my support network, I still think alot about my dad and how he would deal with all of this. What kind of support would he provide? I have had the urge in the past few weeks to call him. Just to talk. He always had a solution for things and he also was so good at just listening. I know that no matter where I was in the world, if I needed him, he would be on a plane on his way to me within the hour. I think all of this would make him so sad and angry but also empowered to fight alongside me. God he would have made one hell of a member of Team OBB. I think he would be proud of me. Not because of the Ph.D I never got, or the huge power job I left, or the giant house I don´t need. He would be proud of the man I found and call my husband. He would be proud of the gorgeous little girl that we brought into this world. He would be proud of the way I carried myself through this marathon of hardships. He would be proud of my ability to still see hope and light in this world.  He would be proud of the person I have become. I know in some way, somehow...he knows.



  1. dear kate,

    what an intensely and honestly written post. I am glad, so glad that you have your blog to help you process all that you have been through, and how it has affected not just you, but those whom you love so dearly. never worry that you have to put a positive spin on things and that if you express feeling weary or angry or fearful, people will think you are giving up. we know you better than that! and what's even more important is that you seem to have gotten to know yourself in such a meaningful way, all through this journey.

    please know that your musings are well expressed and that in being so honest, you are helping others to be honest with themselves, too. and I was so touched when you wrote about your dad - what a loving and incredible father. I know you must miss him terribly, but hope that you get comfort from what an inspiration he will always be to you.

    I am sending you much love, and the bright light of hope to help you find your way, XOXOXOXO

    your fearless friend,


  2. OBB, this is a beautiful post. I want to tell you something. You never have to feel like you can't be yourself, can't be honest, here. This blog is *your* true space, use it and do not be afraid of what anyone else thinks. It must be exhausting to, as you say, find "it harder and more tiring to hide the pain under a tight awkward smile. I am finding it tougher to play the cheerleader and spin everything in a positive light." Just say NO. Give yourself guilt-free permission to feel whatever it is you are feeling. Get those feelings out! Then you can better get on with the fun stuff. ;-)

    PS I just read Karen's reply to you and see she wrote something silimar! Great minds!