Jenny here. It's my fourth attempt to finish this blog. And tonight, I think it must be done. It's just been too long and too much.
Lately, I imagine Wil thinks I'm overly distracted. Overly emotional. And he sometimes feels like I'm not listening to him too well. He knows I'm often tired. And with grace he forgives me. Yet, I still see the look and know he's confused. He's so happy. So social right now.
If behavior were just face value, he'd have it right. I can get moody and inattentive. I often ask for him to repeat things. Stare off into space, just smile and nod...or at my worst moments, get grumpy and short with him. While I'm usually pretty even, I don't know, the past few weeks, I'm just on edge more.
Side note: Could it be the anniversary? Could things be so good I'm adding drama to the calm?
Thankfully, behavior is rarely valued at what you see and, in my case, not at all what I want him to see or experience from me as a partner. I'm
SO happy he's here. SO thankful for each passing moment. And sometimes SO annoyed. Alas, married life. And more normalcy. Ups and downs of my own making now.
I'm not disconnected from him at all. Or upset with HIM...at all. Or it's not my intent to be that way. Yet I do feel these growing interruptions and agitated buzzes more present in my brain the past few weeks. I feel "blurred" because I'm so focused on...everything...all the time...all at once. And yet? Sometimes focused on nothing...at all.
It starts as a relentless intunement with the whole of it...a vibrational pull towards creating meaning out of even the microscopic bits of the day. Not everyone gets this second chance. I want the most of it all. When we learn about another fighter who has died, it throws me off the horse. And I want to make sure I'm really here, really stringing together this new chance. (There may be a twinge of survivors guilt here...from a caregiver point of view...because life is good for us most days now. And I grieve for others that don't have their loves in physical form anymore or those that are losing someone to addiction, infidelity, etc).
So life now...in crowded restaurants, Wil flowing out a stream of words, excitedly, about the world he lives in...I want to hear him...but without fail, a song may come on that I cried my eyes out to last year, and then all I can see and experience is the stark contrast between the man in front of me. Smiling. Laughing. ALIVE. And the words that are booming, and taking me back, from the song now inside my ears. So loud are both the sight of him and the soundtrack of my world last year, that they almost drown each other out.
I can't keep up with his words. Too lost in the total experience of being right there. With him. I can't keep up with staying "intune" to the seconds.
The touch of his hand on mine and I no longer recall what I wanted to say anyway.
Sensory overload ad I try to assemble the pieces of my life with him in something that MEANS something.
We've been dating a lot these days. Like a little old couple. Walking the mall, sharing a cookie, catching a movie, strolling a park at sunset with the dogs. The little things. So nice.
We did act more our age in August and went to an OUTDOOR, germy, concert. People. Sitting on the grass. Late night street tacos afterwards.
His face. It says it all.
Medically, his labs looked AMAZING a few weeks ago. Near perfect. This month will include a BMA and extra blood work. ECG. Lung function tests. If all is well, and blood work remains good, no need for any more BMA's. Ever. He'll also get his first immunizations (remember all that was stripped from him prior to transplant). Each month he's taking less and less Prograf. Even his constant neuropathy is less intense.
Fingers, perpetually, crossed. Next week we reach Day +365.
So it bid the question from his oncologist: "When do you want to return to school and work?"
And this, friends, is where the tide turned for my psyche. The better life gets, the better he gets, the less anxious I should feel. Right? Not. Soooo not.
Unbridled. Undone. In each emotion. You can guess which one of us corresponds to each of those!
I'm not ready. I'm so happy right now in the routine we created this past year. The amounts of time with him. Every day. My breath stops just thinking of not having this time any more. This respite.
Yet at some time soon I'll have to let him go.
He's already doing most errands and housework. He's joined Tai Chi, a gaming group, goes to pub trivia. He's outspoken. Kind. Sensitive. Fun.
And I feel a little lost in it all. It's like forever, or what feels like it, he's been in the dark. Not ready. Hiding. And then BAM. One day he woke up and realized cancer changed everything. So he might as well get living.
And I'm still a puddle. Of happiness. Of fear. Of grief. Of...fill in the blank.
I know he needs to move forward. Please don't say to me, "wow you must be excited" regarding this transition. Because this wife isn't ready for her baby to start school. I'll get there. I just think that for so long I've been so focused on him and in survivor mode (and I got damn good at it!) that it seems this next leg is for me to heal now.
I've spent a few weeks thinking "I just want to move forward with him!" to coming to this place tonight...a place of space. A place of knowing I'm in uncharted territory again and all that that means. Knowing I'll grow "simply because the space is there" now for me to find my way.
But hell. It sure isn't easy.
So it's time to let my internal compass lead. A time to let myself be ungrateful at times. A little less centered if need be. To feel less guilt when I'm undone and breathe...how valuable that nothingness of air is to our survival, yet I try to fill it! You can't force space or now. You have to rest and trust and notice. I'm free of so many demands now, at Day +359. I think I'm more fully unpacking those last 2 years now that I do have space.
Enjoy this poem by Judy Brown that I've been clinging to as of late.
Much Love. Especially to you, Wil, for just being in the space with me.
FIRE ~ Judy Brown
What makes a fire burn
is space between the logs,
a breathing space.
Too much of a good thing,
too many logs
packed in too tight
can douse the flames
almost as surely
as a pail of water would.
So building fires
requires attention
to the spaces in between,
as much as to the wood.
When we are able to build
open spaces
in the same way
we have learned
to pile on the logs,
then we can come to see how
it is fuel, and absence of the fuel
together, that make fire possible.
We only need to lay a log
lightly from time to time.
A fire
grows
simply because the space is there,
with openings
in which the flame
that knows just how it wants to burn
can find its way.
