posted by Mary Lello, Tuesday, March 17, 2009, 6:19 PM
People have told me how my honesty in these writings touches them pretty deeply. Well, I have not been so honest the last few days as I have told people Jim is doing "O.K". The truth is Jim really has not been doing well since last Friday. We both suspected it was the fact that he had gone down from 4 mgs. of steroids/day to 2 mgs./day. Steroids are pretty powerful and keep the swelling down in his brain. And the symptoms we are seeing are such a set back - his right foot drags more like a club foot vs the little scuff it was doing before, his right hand doesn't want to cooperate so coordinating getting a fork or spoon up to his mouth becomes a challenge (and can be pretty messy), his balance is way off, his fatigue becomes greater and he needs to sleep even more and he's unable to retrieve the word he wants to say.
He was beginning to do so well before so,needless to say , all this is incredibly difficult for me to see as it scares me so much and feels like we are going backwards and no longer forward.
A good friend who has an office beside mine looked at the calendar and reminded me that tomorrow (thurs. 3/19) is only 2 weeks out from when radiation stopped. It is a 4 week cool down period and radiation continues to work and create swelling in the brain during these weeks. O.K., so breathe a little bit, there IS still swelling and it IS still early in the cool down period. And the doctor agrees that we need to go back up to the 4 mgs/day of the steroid, which we started yesterday.
Still, I have found myself on the edge of tears a lot these last few days. Patience is low, stress is high and I've got to make decisions I don't always feel qualified to make. Feeling pretty beat up, very scared and set adrift as my wonderful, competent man becomes childlike again.
I got an email yesterday morning from a dear friend who we haven't seen in a while as she doesn't live in Maine. She is writing to me from her annual retreat to turquoise waters and warm balmy breezes. She shares her adventures into the depths of that crystal sea with spotted rays and this makes her think of Jim - who has been diving since he was 12 years old, loving that weightless world and the sense of flying. And she tells him how "the translucence of the curious squid who stare with impossibly huge eyes, hovering on little rotor fins" has her thinking of him. And she says to me "You are in the call of a barred owl as I walk to the barn late on a frigid February night, because you taught me who-cooks-for-me. You are both of the beautiful parts of the world that deepen my understanding and enlarge who I am."
She writes not sure what to do or what to say or wondering how she can possibly help. And as I sat there yesterday morning in the early light of dawn I put my head down and allowed the tears to start coming, the sobs that begin in my belly and bubble out with huge sighs to begin to flow. And her beautiful way with words offering love and understanding of who Jim and I are and understanding of all that we are facing now began to wash over me like those gentle undulating waves of blue-green water. And from so far away she sent exactly what I needed - a catalyst for my tears that needed to flow, a salve for my fears and words of understanding of who Jim is.
And once again I am struck by the gifts that come with this, even as my heart is splayed open and so vulnerable, or perhaps because of this.
I've been up early enough to observe the flocks of crows in their daily flight from some unknown roost as they make their way across the pastel morning sky on their way to equally unknown destinations. And I understand that the world goes on as Mary Oliver says in her poem WILD GEESE:
Tell me about despair, yours and I will tell you mine.
Meanwhile the world goes on....
Meanwhile the wild geese, high in the clean blue air, are heading home again. Whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh and exciting - over and over announcing your place in the family of things.
Today is a new day,