Friday, August 1, 2014

Beat Down.

I feel tired today and light-headed.  Part of that is a lack of sleep -- in fact I'm hoping it's most of it, because if this is the new norm I'm not going to be a happy camper.

That's part of the problem with all of this -- you never really know what the new norm is.  Not to mention between being so sick last week, the Neulasta shot Monday -- God only fucking knows what "normal" is like.

Yesterday was a difficult day.  I haven't seen my therapist for several weeks due to scheduling and health-related conflicts, and as usual the walls fell down and I just core dumped everything that has been going on lately.  Not sure how many epiphanies we really discovered, or perhaps even the value of exorcising all of that darkness yesterday.  It's all kind of a blur today anyways, fogged by lack of sleep and a workday of putting out annoying fires.

Of note from the session, or at least sticking prominantly in my mind, is my lack of fear of death itself.  Is that strange?  I fear dying, not death.  I don't want to feel pain, to feel myself slipping slowly over time.  I don't want to see what it does to those around me who have to bear witness, and perhaps even carry the burden, as my life fails.  I stay awake at night horrified by the thoughts of what a dying father will do to my daughter.

But death, on the other hand, I almost welcome in a way.  Not to sound suicidal, but when you've lived so long with this monkey on your back, with these thoughts and pains and horrors and drugs weighing you down as you just try to get to work on time and be a good father and husband, it can sound almost comforting to just be able to put it all down for a while.  Or maybe for good.

I hope this weekend is more cheerful than I feel right now -- really down and depressed, and it's so goddamn hard to find things to be hopeful about lately.


  1. Thank you for so bravely writing about what is going on with you - where you are at mentally, physically spiritually.

    I so admire you.

    Know that you are brilliantly loved all of the time. Just know. Because you are. xoxoxoxoxoxoxo to all of you.


  2. I want to thank you for writing your blog. I found it tonight while trying to do research on MM. I wanted to see what life was going to be like for me and learn from first hand accounts from others with MM. I was told Thursday I have MM, I'm 44 and will be 45 on Wednesday this week. I've known that something was terribly wrong with me but no one seemed to take it serious and did little to no testing on me. Finally some lab work was done that pointed to problems and here I am.

    I do not have kids, I feel so very sad that your daughter is going though this with you. I think your writing this blog is amazing and I love your truth and honesty in telling how you feel. I also know it is not something you can just blurt out to those around you.

    I hope you can keep up your letter writing to your daughter. Maybe even take lots of pics of you and her and video too of you all together. My Dad died when I was younger and I wish so much that I had some kind of video or voice recording of him. I would just love to hear his voice again.

    Do NOT give up, keep fighting this monster. I've read a lot about this disease and it seems that they are making some progress to help us.

    I hope to keep reading your blog and seeing how you are doing. You make a difference in peoples lives in writing here. I send my good thoughts to you for recovery and many good years with your daughter.

  3. Great comments above. Rich, I have no words for what you are going through right now. I know I'd feel the same exact way. Like the person above said, they are making progress, there is hope. I still pray for you with my bible study classes and will never stop. You have a lot of people who love you! Thanks for your blog, it really makes me realize how precious life is, and how fast our health can be stripped from us. You are a fantastic writer, plus a great dad, the best! <3 Lynn