Thursday, 18 July 2013

If You Can't Say Anything Nice...

So honesty is tough. It requires a lot of effort to look at where you are and admit that sometimes you've descended into a dark place, acknowledge that is where you are and figure out how to climb out of it with a modicum of grace. I was naive when I started this journey that it would be a straight shot from diagnosis to the end - and I would stand somewhat aloof from everything that was happening,  accepting the inevitable and watching the process with something akin to the detached view of an anthropologist observing the habits of a Pygmy tribe. Of course reality dictates that there is no detachment, though in retrospect the initial shock seemed to spare me the slow absorption of the knowledge that everything has shifted. Initially everything sounded more imminent, in part because there was no real baseline to compare to - but over the last four months, nothing has really changed from a clinical perspective and it has left me perplexed and anxious about what I am supposed to do now. And from there I landed in a space where I wanted to stand on the edge of the ocean and scream into the wind until my voice left me...where watching everybody moving forward and living their lives - the very smallest moments and experiences - filled me with a deep and profound resentment. In a nutshell, I felt intensely and utterly sorry for myself - which is a very nasty feeling indeed. It is hard to confess that I felt that way - because I feel a deep need to do this right - to be cheery and zen-like - not to lose perspective or let myself drown in self-pity. I know the resentment is not really attached to anyone else, but more the lack of control over how my future might unfold and simmering anger at myself for not being strong enough to prevent this in the first place. So the only way I know how to get over this is to stop putting off the things I need to do to get my proverbial house in order, sorting out the things I can control and drag myself out of the inertia. It is a slow and painful climb and if adversity is a great teacher then it is time for those lessons to kick in...and in the words of Sue Townsend in my treasured Adrian Mole diaries recognize that a short, sharp shock may be just what I need to move on.


  1. "Life is what happens while you are busy making other plans" - or while you are waiting for it to start or to end or to ??? It makes sense for you to feel anger and resentment. It makes sense for you to feel helpless when you don't have "definites" to fall back on.

    It does not make sense for you to blame yourself for a lack of strength or control. You are an incredibly strong person who has had more than your share of blows over the years. But the blows should not be where we leave it. You are a caring, loving, passionate person who has people who love you all around you, even when the landscape is hard to see. You are a champion; you have saved people through your high-level influence, and you have acted out of compassion in so many ways. There have been so many successes in your life, and they deserve celebration.

    You are such a very good person. But that is the problem - you are a person, and you are not perfect. There is no "right" way to face what you are facing. If there are times of lost perspective or self-pity, well, that is normal - human. So are the times where you might feel a little bit zen-like. But in the end, as you observe, it will be a slow and painful climb for you as you negotiate your next steps. But please know that, if we can, the people who love you will be beside you, hoping to help in any way we can.

    Don't mean to tell you how things are - just want you to know you are not alone. Love you!

  2. Isn't it crazy how easy zen moments can turn to dark ones so easily? Just know that you are not the only one to feel this shift. Please don't feel guilty for finding yourself sad or even mad at times.

    The mark of bravery is not brought about by choosing all the right paths, but it is measured by journeying on even in the dark forests and the high seas.

    This post shows that you, Michelle, are one brave lady.

  3. i cannot claim to be an expert, but i have never thought of you as cheery and zen-like... caring and passionate. absolutely. loyal and generous to so many... and, thankfully, not perky. because perky people freak me out.

    there is no right way to face what life throws at you. just be yourself - whatever this is in the moment. i am here and i am listening and your reflections matter. you matter. xo laura

  4. I think that resentment is normal if anyone going through a serious illness or facing death (I don't know if being normal is a relief or not!)

    I know my mom struggles with it sometimes, as she deals, day by day, with a chronic disease that will eventually kill her. I deal with it on her behalf, too -- I can be deeply resentful of other people's parents going on trips to Europe or even babysitting their kids -- things my mother would love to do but will never be able to, because of the stupid lupus.

    We love you not because you fill some role as the strong and heroic person who is dying. We love you because you're Michelle.