Exposed

Jenny here.

First the updates.  Wil is half way through his 2B round of Hyper CVAD treatment (a type of chemo protocol). Bags are being changed, monitors beeping, and he is soundly asleep as I type. In a few weeks, if all continues to move right along this path, we will be half way through the consolidation portion of treatment (4 more inpatient rounds for sure)!  He is in such good spirits. I am in such good spirits. I want to breathe it all in.  I hug him tighter these days. Is that possible?  My *imperfect* love for him is more expansive than I could imagine.  He feels so tall again, upright, better balance, doing laundry and dishes on his good days.  I sometimes come home from work and find more eggs have been purchased or his prescriptions have been picked up. He's independent most of the day and, in most things. I try not to take it for granted.  A day doesn't escape me that I'm not grateful for how far he is come.  We try to not lose sight that not every partnership makes it through a health crisis like this and that a marriage, alongside this cancer journey, still takes work.  We are lucky. We still pray for strength and patience continually.

It's hard being inpatient every 16 days. The time at home goes so incredibly quickly.  With one crappy feeling week and one good week, before you know it, it's time to pack again.  Not to mention the weeks at the hospital are draining with interrupted sleep every hour.  I usually stay most nights.  I'd rather miss sleep than time with him. 

By this point, day number 62 at UTSW (combined total hospital days, from all stays since November), the staff here have seen in me in so many states. Here, at the hospital...at the moments of great heart break, of triumphs, sleepless nights, drooling on my pillow exhaustion, scary hair, random tears at awkward moments, shower optional-ness, sometimes no bra, coming in after 2 a.m. from work, take charge, picture taking fanatic me...here the staff has seen every side of Jenny possible. More, quite frankly, than any of you will ever see!  Sides of me Wil had never seen (and some he will never remember).

Sure, it's hard being here every 16 days, and yet now, we have started to talk about what life will look like without, eventually, being here all the time.  And that feels strange too.  We will miss our little "family." Does that sound like Stockholm Syndrome?  Assimilation to our captors? I know it's their job to care for him.  It's the amount of care, and the caring for me alongside him, that gives us that feeling of home away from actual home.  It is sometimes in the moments of stillness, quiet awareness, that I value them most. I don't know if they have been touched by cancer in their own family, but they certainly seem to understand it. 

I know I have written about it before, but there is some sort of sweet surrender here.  A stripping away of your life beyond this 8th floor, of putting aside the things that don't really matter in the grand scheme of things.  Of letting go, coming undone, finding the essentials. I've been thinking a lot about that feeling here...the professionals who care for us....of being known by, technically, strangers in a deeply personal way.  This is the caring paradigm, I'm just not used to this side of it. 

Do you ever want to share something deeply personal, but fear the outcome if it's said out loud?  Fear the silence that most likely will meet you after sharing profoundly agonizing feelings?  The uncomfortable stares? Here at the hospital, in my varying states of disarray, I cannot hide. You can have any kind of day...the staff have seen it and can read your face.  And they continue to ask if you are OK even as you try to occasionally fake it.

Exposed.

It's the word that keeps coming to mind.  Wil is physically exposed over and over through this process. I find myself emotionally exposed though, as well.  I understand the risks and wonder how putting most of this experience out there, in a public space, in words, could affect my career later?  My relationships?   Will people look at me the same?  Certainly this blog started out as just a communication platform for close friends and family to keep up to date with Wil's treatment.  From his perspective.  I had no idea the the significance it would play in my own personal processing.  

And so life laughs at me, just a little.  And I'm learning to smile back.

I deal daily in other people's vulnerabilities. I am, by trade, a therapist.  I keep my feelings in check, not stored away but moderated, so I can focus on my clients and support them.  I use myself in those therapy encounters.  I love my work. I often say to clients, "we are all on a journey, just a different places," and I  mean it with all of my heart.  I keep boundaries, while also caring with great empathy.  So when it comes to being open myself, to letting my guard down through writing, it feels counter intuitive.

Top Secret: Us therapists are far from perfect.  To continue to better your work practice, you have to be curious and active about our own life practice. We probably spend more time analyzing ourselves than the people we meet outside of work.  I can be my own worst mental enemy!  But I've tried to stay true to my intentions here.  To be open, emotionally bare.  To accept the feelings I would ask my clients to accept in themselves, no matter how terrifying the honesty, at times, can be.  It's all a part of this life thing, right?  The support we have received back has been validating yet, I know, at the center of things I am really just trying to make meaning of events in my own heart.  And it's my own ability to embrace or not embrace my journey that makes all the difference.

I recently found writings from last year.  Angry, brooding.  Dark, gut wrenching. From during the time we were chasing the diagnosis and scared.  Before we had told many people about the what if's and certainly before the blog started.  I had never intended to share it with anyone...not even Wil. It made me nervous.  But last night I read it to him. He is strong enough. He always has been. I'm starting to give him the opportunities to care for me again too.

This is what I know now:  Hiding involves fear, love illuminates.  Directly leaning into and embracing the shadows continues to somehow catch my falls.  I sometimes wonder what will become of this little blog.  I still write it for Wil because I made him that promise. But I'm learning that I've been writing for me too, and in the process of laying down feelings, of my humaness being exposed...the whole gamut of ups and downs...it is has given me freedom to be fully alive and, now, dressed in even greater love.

The following is an excerpt of what I shared with Wil.  A mile marker of once upon a time. Nothing more, nothing less.
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Darkness (5/3/13)

"Can you handle my darkness?
I'm not sure where I live anymore.
Somewhere between light and depth.
In slow motion...rewound, fast forward.

"Can you handle the forecast?
The sun most days. Yet followed by shadows.
A despair down pour followed by partly OK.
Oh the crevices of possibilities.
Somewhere between hope...and the fragments I keep glued.

"Can you handle my lack of ability to hold it together for you?
To avoid the egg shells around your comfort?
I'm too tired to care anymore.

"Can I scream its not about you?
I'm lost for the words to convey the abandonment I feel when I think of you.
I'm not sure where I live right now...
But you don't even want a forwarding address to this nightmare.

"Where could my heart reside if it wasn't with his?
If not in this home of everything I've ever needed.
Now, half exposed brick from the pressure cooker.  Home, ignited.
Shadows, broken, carried, draped across my limbs.

"I've been running and running and running and running for a long time.
I wasn't fast enough to escape my worst fears.
Trying. Just trying to not lose more familiar walls to the terror of what is.
Rebuild? Not the question. What materials we are left...Realness."

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The Jenny who wrote those words in May 2013 was alone and scared, already feeling relationships drifting away.  I could not have known how wonderful and surprising it would be to have unexpected people rise up, fill in the gaps, and to help carry us on. 

Today is different. The revealing of self, the new community that has sprung up while we struggled to find our way...you would think that protecting your life details and feelings LESS during this time would make you more susceptible to heart break.  Yet it's done exactly the opposite. It has opened us. It's been a light to the dark, a light to our path.