Today's a 'Bad Day'... Can't Stop Remembering 2008

Losing Wayne.... again

I find myself crying, sobbing, vocally mourning the loss of Wayne like I did the week of the stroke. I'm surprised by this, yet I'm finding it to "make sense". We are at another "fencepost" as a caregiver class referred to it; a transitioning spot where what was is no longer and the next stretch of fence looks very different from what's behind us. and it's unknown. I'm not bad with unknown (at least I don't think I am) but I am terrible with closing chapters--and I mean terrible--and with letting time pass to allow for healing (a.k.a. Patience).
Wayne needs daily, maybe hourly, care; so he will go to a skilled nursing facility. His apartment lease ended and I've been moving him out over the past week... It's another crazy "widow" type experience, going through all of your loved one's belongings and having memories flood your being without warning, and having to decide what to keep versus what to donate.  My body is manifesting the stress physically: I've been in cold-sweats for 8 days now, my oh-so-awesome facial numbness, and a rash taking over my right hand.
I miss you, Wayne!

 November 2nd would have been our 11 year wedding anniversary.

I am lonesome for him--it hasn't been the same since 2008 (obviously), but at least I had some bits of Wayne in my life. I'm at the point where I'm realizing I've been underwater for months, treading water, holding Morgan with one hand and Wayne with the other, kicking like mad to get all of us back up to the surface... but I can't.  The divorce and the loss of my job caused Wayne to be on state healthcare and benefits. And then the leg fracture requiring surgery and after-surgery PT (physical therapy) and nursing and pain management care--it was like a trifecta that demanded I take another path.
   I wish I could continue to muster the unhuman strength to get all three of us to the surface.
   I wish he could live up the street from us, take the bus down to our house and visit Morgan and/or Luna (our 2 year old Australian Cattle Dog), and spend Fridays with Morgan.
   I wish he could have freedom, independence, and a life.
I called Wayne two days ago, so Tuesday, and just sobbed on the phone. He did too. I said, "I'm so sorry that I can't come visit you at the hospital.  It brings back too many memories, and I really need to detach from being your primary caregiver. I hurt and hate that you are sitting in a hospital, and that you are probably sad, hurt, and lonely.... but I'm sad, hurt, and lonely. I wish you had chosen me.  I can't protect you from sadness, pain, or loneliness.  I can't protect you from anything I'm realizing. But I can protect myself. And it is so painful to not be there with you or for you!  I'm so sorry that this is what life handed us and it sucks.  I love you, and I'm not taking Morgan away from you, or abandoning you. We'll come visit you when you move to your new spot, once you are out of Harborview. Okay? Okay. Bye."
The best analogy I can identify is how it must feel when your loved one gives you the last seat in the life raft... how Rose must have felt in Titanic when Jack left her to survive. Why does it have to be a choice? Why can't we both survive? Why does one of us have to sink?
I suppose we both can survive, actually.  I just can't be the one helping Wayne to survive. He needs to help himself do that, and if he needs assistance in doing that, it can't be me to "save" him.

*Light bulb* (hahaha--like in Despicable Me. LOL)

Manifest-ering

On Saturday morning, as Morgan and I walked to the car after a sleepover at one of her friend's house, she mentioned Wayne for the first time in 12+ days. "I hope daddy is okay.... I wish I could see him--can I visit him at the hospital?" "Absolutely. Let's head there now. Okay?" "REALLY?!?! Oh thank you Mom! Thank you!" as she tilts her head to the left, places her prayer-shaped hands on her left cheek, and bats her eyelashes. (She is "Gone With The Wind" girly-dramatic--I can actually imagine her saying, "I do declare!")

Then, a few seconds later, "Mommyyyyy? I'm scared to see daddy," Morgan said timidly. So, we talked through it and what to expect and what our plan was and how long we would stay and what did she feel our purpose was in going there and what we are not going to do while there, talked about what she was scared of, talked about all of it during the 15 minute Express Lane drive south to Harborview.

As I turn onto 9th Ave, I can feel my lip go numb and my breathing get shallow and exaggerated... I hate seeing the Emergency Room entrance... it all rushes back:

racing from Northwest Hospital on 2008-April-02 to Harborview, not knowing where to go, not knowing if Wayne died in the ambulance during the emergent transfer, having to get into the parking garage and unload Morgan and the stroller and the diaper bag, unsurely approaching the Harborview West Entrance and if this is where we were supposed to be, seeing several people leaving Harborview carrying plastic, bright neon orange Harborview Discharge bags... "Please let Wayne get one of those bags someday," I say under my breath.  "I hope we get an orange bag..." I said to my mom walking beside me as I push the stroller through the automatic doors. The possibility that he may not leave the hospital at all but rather have one last transfer, to the morgue, was very real.

We easily find parking on a side street, and before we get out to visit Wayne, I turn to Morgan and calmly and matter-of-factly explain, "Because daddy almost died here [5 years ago], the sounds and smells and seeing certain things can be very stressful to me. It also brings back a lot of stressful memories. And when I am that stressed, I can have a difficult time breathing and staying calm.  So, I am going to have music playing in my left ear [through my hands free earpiece connected to the KindleFire] to keep my brain busy and to help keep me calm. I hope we can stay until you are ready to go, but I might need to leave if I get too stressed-out." She agrees to this plan.  I also acknowledge "if you get too stressed out or scared, we can leave at any time. Just tell me when you want to leave..."

Me as a 'Sister Wife'!

When all of us "stroke wives" were in the depths of grief, problem solving, mastering the juggling act of so many roles, I joked that what we each really needed was a "sister wife". I'm sure the idea came from my adoration, commitment, and obsession with HBO's "Big Love" series.

We each needed someone who loved our stroke-survivor husband as much as we did, was willing to stay "knee-deep" in the trenches of this post-stroke life, and be a support system, shoulder to cry on, and another adult brain in-the-room to help make decisions for us stroke-wives.

I received this mug in the mail today from one of my fellow stroke-wives... It's like a trophy or an award!

So... "I'd like to thank the academy".... of aphasia, apraxia, epilepsy, neurology, ... To all of 'the therapies'.... you know who you are ;-) ...

And to my stroke wife sisters... *tear* ... I don't know where I would be without you, both mentally and physically, if I had not had you to share AND CONTINUE TO SHARE this unique, forever altering journey.

LOVE YOU 'sisters'!

Broken

So many things seem broken.

So many things are broken.

I feel broken. My commitment to Wayne as a friend feels broken. My perseverance and steadfast dedication to facilitating, fostering, and feeding a relationship between Morgan and Wayne has been broken.  My willingness to include Wayne in future family activities, even if or when I have a new partner, has a fracture in it now that may never heal.

Seven days ago, none of this was true.

Six days ago, Wayne fell and hurt his right ankle, and it was not realized by me until I was dropping Morgan off at her dad's apartment on Friday afternoon for their weekly sleepover.
After Wayne didn't answer Morgan's repeated (and annoying) doorbell "alerts" and I finished sending the text message that I was typing, I used my key to open his apartment door only to see him struggling to stay upright, in severe pain, using a cane with his one working arm as a second point of contact with the floor as he wasn't able to put weight on his right foot. My high-functioning, wanna-be-ER-doc, skills kicked in. I rush to help him, and with his arm over my shoulder, we attempt to get him back to his bedroom, but he can't keep his right foot from hitting the floor, so I quickly squat down, wrap my arms around his waist, and lift him while walking him back into his bedroom.
I started having an anxiety attack and felt myself starting to dissociate. He was adamant that I should take him to the doctor, but I seriously could not take-in the millions of feelings, thoughts, reactions, concerns, flashbacks... the lower right quadrant of my lip and chin started to go numb, which is my body's (unfortunate) white flag. And then I notice Morgan quietly standing in the corner of his bedroom, tears in her eyes, lips quivering, but so desperately trying to not cry, show concern, or distract my attention from caring for Wayne which has been (unfortunately) the most emergent task over the past five years when he is in need of something. Both Morgan and I have been on the back burners for five-and-one-half years! Ugh! And not okay!
I pull Morgan towards me, calm her, get her settled-down as much as I can in a very short amount of time, because I now know that my body had already surrendered and I needed to get me out of there too. I set Morgan in front of the TV: our most frequent, reliable, and not-as-damaging-as-what's-happening-in-the-next-room babysitter over the past 5.5 years.
I close the bedroom door, and say, "If you can get yourself to the pub to land yourself in this condition, you can get yourself to the doctor.  I can't do this," as I begin to have another panic attack and can't catch my breath which scares me which makes it even worse... again: ugh.

I take Morgan home, talk over my thoughts and options with a kind friend, and decide to beat the stress out of my body by working out and running on my treadmill rather than what has become my "norm" when my body throws-up-its-hands (the norm: taking an excessively long, steaming hot shower while I lean against one of the walls, while the water pours over my back and neck, snuggling my arms in between me and the now warm shower wall, hugging myself, and just crying. Crying hard. Not always making sound, sometimes not able to take-in a breath because it seems that there is so much that needs to come out, but rather frequent drops of silent tears from a heart that aches).

I feel broken. I've started living, loving, and laughing again in a way that feels so normal and Julie-esque (sp?)... but there's an overwhelming pain that still exists in me, a trauma experienced which can never be forgotten, and triggers that cannot be prevented or predicted. And it all appears to be just below the surface. Tucked away just enough to fool you into thinking that you have moved beyond that pain, that you are "really doing well", that you can tackle a new "stressor" (be it a good or bad stressor, like Halloween & Trick-or-Treating, or Morgan's first Picture Day at School, the loss of a tooth & therefore coordinating with the Tooth Fairy), ...
I've dealt with all of this, while raising a fairly well-adjusted, bright, caring daughter, without a partner. My partner was the "affected" one. I haven't had anyone to come home to, to get a hug from, to talk through and process the day with, to laugh with and tease each other, to make small & seemingly meaningless decisions with, or huge, instrumental, high-impact decisions with. There's a loneliness that I'm unsure of how to "handle"...

I cleared my head on Friday by pounding out the stress, frustration, and angst in me on the treadmill and expelled the anxiety, stress, and fear from my body, like the toxins they are, through sweat!

So, I cared for him over the weekend: iced his ankle, tended to the multiple wounds on his right limbs, ACE bandaged his ankle... on Monday, it was much worse. My body went into full-on denial mode and was waving all of the white cloth items it could find. I pushed through and took him to an urgent care and they X-Rayed his leg and it turned out to be broken. I couldn't catch my breath the entire time he was in the clinic, so the doctor called me and told me that it was fractured, not just sprained like we thought, and she will send him via ambulance to a hospital. I, of course, chose Harborview, and he was prepped for surgery upon arrival.

The idea of what our life could look like continues to shift, shatter, morph, melt, settle, but right now it feels broken.

Recognizing the Depth

January 10^th, 2013 was an eventful day to say the least. It’s been difficult to get Morgan off to preschool—I work from home now and I have conference calls that start before I can get M to school, but then I also have a very small window to get her to school. And, quite frankly, all excuses aside… I don’t have the energy, the steadfastness to fight the uphill battle everyday. No matter how much it would be easier for all of us…. It. Just. Is. Not. Possible. Can’t do it.

I can’t get her dressed while she begs and cries to not go to school. I can’t get her to eat, I can’t get her in the car, I can’t get her into the preschool building and dropped off. Now, I can’t. Not “I can’t get her to do what I’m saying”. If I had time, patience, some tiny morsel of stamina and “bandwidth” left, I could…. But I don’t, so I can’t.

I probably could if I wasn’t working and had all day to recuperate and then get ready for her energy level to come home and do the evening routine.

We are barely skimming by. On every front. Barely getting enough hours in at works. Barely getting food into our systems. Barely getting sleep. Barely getting Morgan into a routine (morning, day, or night-time). Barely able to pay rent. Barely able to fit into my clothes I’ve gained so much weight these past 5 years. Barely able to imagine what 2013 will hold.

My cell phone rings mid-morning and a girlfriend that I really admire and love, and had secretly hoped to be closer to her and a friend she would “select” to confide in. Well, it was her on the other end and she was asking Morgan to be her flower-girl in her wedding this summer—August 2013. Yay—how absolutely exciting!!! Morgan instantly went and packed her Strawberry Shortcake rolling suitcase and set it by the front door. “When do we leave?!?!”

Then, my friend Beth asked me to be a bridesmaid in her wedding… wow. The depth of connection I felt was amazing. The depth of appreciation I felt was great. The depth of being honored by a woman I hold in high esteem was filling.
This is the little “push” towards normalcy that I’ve been seeking. How do I start getting out, into the world, into friendships, and living life? This wedding was gonna be it. I am elated!
I took a break to eat lunch, and Wayne came into the bedroom where I was sitting on the edge of the bed, watching tellie, and eating lunch. He stood there, dazed and eyes glazed-over, left hand on his left hip, shaking his head, and lost in thought while looking out our bedroom window at Puget Sound.
“You look concerned?”

“Yeah!”

“Do you wonder if we’ll get back to New Zealand this year for vacation?”

“Nah. Whee,” while shaking his head and waving his hand to indicate ‘No’ like he was sweeping crumbs off a tabletop.

“It seems like it’s something in the future. ?? Yes??”

“Wheee! Yeah. No, no, no.” (which translates to, “Yes! Totally—you got it. Something in the future!”

This went on for 20 minutes. Back and forth. Yes-No questions from me. And random words with clear inflection and excitement or disappointment in his voice when I got it right, or got it wrong.

Finally, I hone-in-on the fact that he is talking about his and my future. And then I pause… I freeze. “Do you want a divorce?!?”

And, Wayne, still zoned, calm, and matter-of-factly, didn’t show excitement or like he usually does when I finally get the point, “Fuckin’ finally”… he just nodded his head, and said, “Yeah. …. Yep.” And then he broke the unbodied gaze and looked at me with defeat.

I felt the same. Defeat.

The depth of defeat I felt was suffocating. I felt the depth of this realization for him, and to make this decision for our family, was startling. Deep. Deep, deep, deep under heavy boulders. Deep, deep despair. Deep fear and anger and loneliness.

I believe he saw Beth’s invitation as a sign that people move on and get re-married. That happiness is still an option. That the road on which one is traveling is not necessarily the best road.

Five days later, on January 15^th, I had a long dream. A dream from which I awoke crying. Sobbing. It was a dream of Wayne and I, sitting at the plastic white table down on the Seattle waterfront where we sat on our first date. He looked like the 1999 version of himself—more of a mullet-style hairdo, less of the post-hypothyroid-bulging eyes, no dent on his forehead from the craniotomy, and words. Words that I long for him to say and for me to hear.

“I’m calling it,” he says in my dream. “What?! You can’t just call it. We are in this together!” “Well, I’m calling it.” “You can’t just make that decision for the both of us. I’m here—I love you. We aren’t calling it quits!” “Well, I am.” I couldn’t believe it. How could this deep love of our lifetimes just be done? How could he be just putting a “lid” on this deep life that had intertwined and evolved?

“I’m not leaving you!” I scoulded. He said, “I know. I’m leaving you. I’m holding you and Morgan back. I’m not moving forward, Julie. I’m stagnant. And you and Morgan aren’t moving forward. You’re stuck. You need to move forward.  And you have to do it without me.”

“I don’t WANT to do it without you!”

“You’re gonna have to.”

“You do not get to make this decision for all of us!”

“I am, and I did.”

“So… you still love me then?!? I thought you asked for the divorce because you didn’t love me anymore with how much I’ve changed since the stroke….”

And he just smiled his Wayne Bacon smirk and did his fake-wink at me (where he acts like he is winking his right eye, but he turns his head to the left while tipping it toward me so that I can’t see his left eye and it looks like only his right eye is closing… but, he can’t wink… so he’s blinking, but hiding the left eye from me).

He does love me—okay. Well, now I’m not as confused, because I just couldn’t understand how much we could love each other and then have it just all be gone. Poof. Vanished. Shallow. Nothing.

I woke up, to January 16^th, 2013, and I was bawling. He woke him up, and I told him my dream, and asked him if he still loved me but just realized how “we” no longer worked… and he started to cry.

I felt the depth again. It was no longer where I would reside and live and love and laugh… but the depth was back.