Monday, March 31, 2014

Epilogue

I can't believe it's been over 2 weeks since I've posted. I thought I've been doing pretty well, all things considered, but I'm just now starting to see the broken bits and pieces of things I have neglected or forgotten.

Like laundry. Everywhere.

It's like waking up after a huge party--slightly fuzzy, ill and disoriented, trying to figure out whose house you're in and why it's such a mess. And then realizing it's your house. And remembering that the party wasn't fun at all.

And you still have to clean it all up.

I slept for that one week, which was amazing. It's like my brain knew we had to have space between everything that happened and the rest of real life and it threw the emergency shut-off switch. The next week was hard though. I felt emotionally raw and my normal daily tasks felt impossible. People would complain about random things, minor complaints, valid complaints, and it was hard not to scream, "THIS IS NOT IMPORTANT!! I can assure you that it's not! I now know what is important and this. is. not. it!" But I would smile and nod and agree that yes, this was a problem and offer my sympathy or solution. I varied between wanting to blurt out what I had been through and also constantly trying to protect people from it.

No, I wasn't here last week. No, I didn't go on the retreat. No, the kids weren't on spring break. No, I wasn't away on vacation. Aw, that's nice that you missed me, I missed everyone. Yes, I haven't been here for two weeks, it has been a while. Where was I? My dad died. (Boom!) Yeah, it was sad. It sucked. I'm glad to be back.

I tried to protect you, sweet people who care about me but aren't necessarily in the know. I tried to save you from that, "Ah, fuck," feeling that would wash over your face when we finally got there, when I could save you no more. But you had to know. And I don't mean that in a snarky, wish-you'd-not-asked kind of way, I mean that these people noticed my absence, missed me, and have an interest in my life. It is a good thing. It is a fortunate thing. It was a difficult thing.

I cried hot, quiet, trailing tears every time I closed my eyes in yoga class. I had to remind myself to make normal people faces when working. I pretty much only ate applesauce in squeeze packs and little discs of cheese and the small offerings of coke and candy Mr. Ashley continued to bring. I stopped sleeping at night.

And one night, when I was in that odd space between asleep and awake, where you can feel the room around you but you aren't fully mentally there, my dad pulled up a seat next to me. A cooler, more specifically, which is weird but actually not that weird at all if you know my dad. I was so excited to see him, so thrilled to hear what he was going to say to me because I could tell he was about to talk...that I woke up.

Ugh. I woke up. Woke up! How could I have woken up?

I wept against my will all day long the next day, through yoga and work and life. I felt like I had missed an opportunity. It felt like I had missed many opportunities. It felt like the overall theme of my life is one of missed opportunities.

Why do opportunities have to be so damned tricky in the first place? Slippery bastards.

My mom asked what color the cooler was and I told her it was red. She told me that his work cooler, from his job as a medical courier (a job that he loved with an odd intensity, a job that kept him alive) was red. If you can do whatever you want in the afterlife, he is probably still doing that. My dad, medical courier of the afterlife.

I spent all of that night and many of the next trying to get to that in-between place of awake and asleep. The result was a cessation of sleep after a full week of overdosing on it.

We had a memorial dinner for him and sprinkled his ashes off of our city's pier. We walked its length under the cover of darkness, to perform a beautiful, dreadful, not-quite-legal chore. We grouped up in a corner and waited for my dear husband to retrieve my phone from our far parked car, so we could have music. While we waited, my mom commented that it would be nice if there were dolphins and my brother and I leaned against the pier's railing and laughed at the seemingly outlandish request.

"Yeah, really, dad...we couldn't get some dolphins? You couldn't send us a freaking porpoise? I mean, what else is he doing that he can't arrange for a fleet of dolphins to greet us?" As our chuckles died down I heard a commotion below us and looked down to see...a dolphin. Not just swimming by quietly as dolphins usually do, but breathing noisily and splashing directly beneath us for a moment, long enough for us to see its blowhole sink back under the water as it swam away.

It was pretty impressive. It still feels slightly impossible. My mom managed to miss it entirely.

We played the songs he passed to, Ralph Stanley's "Swing Low, Sweet Chariot" and "My God is Real" by Krishna Das while we quickly and quietly sent my dad on his final journey, away on the current of the Gulf of Mexico.

A small group of fishermen and tourists remained with us at a respectful distance, observing us
and listening to the music. As my husband struggled with lighting the sky lanterns we had brought, one of them stepped forward.

"You can be ticketed for that, the fine for it is $150," he said, haltingly.

"That's okay, we'll pay it," I replied.

He joined our small group without further hesitation, helping to hold the lantern while it filled with hot air, lifting it to catch the breeze and float away. We all watched in silence, the whole end of the pier watching the ascent of the lantern, as "Let it Be" echoed around us. It was beautiful and perfect and painful, like life. The kids cried while the adults sat in tired, overwhelmed, peaceful, lovely silence.

Memorial lantern collage

little kid went home and drew a picture of the pier and of the moon reflecting off of the water.

It says, "Sadly, gramps died from long cancer. We threw flowers on the water and lit lanterns for him."

It broke my already broken heart with its sweetness.



We went camping in the Keys last weekend, a trip we had planned before everything happened and one I was dreading since everything happened. I am usually the packer and preparer and did a solid C- job at it this time. It was exactly what I needed, though -- the sun, salt, family and play. The time to think and talk and nap and work and play and be a real person who was physically away from it all.

So despite the fact that this will never truly end for me, I feel safe to say that I'm enough in the land of the living to not only pass for, but to truly count as, a real person again. I am picking up the broken bits and pieces and cleaning up. I'm finding things funny and people easy and work enjoyable. I am awake. I am doing the laundry. Things are getting back to normal even though they'll always be (and I'll always be) different now.

Thursday, March 13, 2014

Small Successes

Today was my first day back at work and my first foray out into the real world.

Yesterday was supposed to be my first day back but I woke up and thought of all of the things I would have to do (mainly, put on pants and brush my hair) and decided it simply wasn't physically possible. That I could put on pants OR brush my hair and I could drive to work OR work but that I couldn't do any combination of those things.

Right now I am only capable of:

1. Not wearing pants
2. Watching House of Cards
3. Napping

I don't ever cry, I just sleep. People greet me cautiously with comfort, as if I might cry, and I want to assure them that I am way too busy trying to stay awake; that they are safe. I don't know if I'm catching up on all of the rest I missed last week or if I have sudden onset narcolepsy or if my brain is simply not being a jerk to me for once but I sleep from around 9pm-8am and then still need a morning and late afternoon nap. It is ridiculous and delicious, these deep rests without dreams.

But because I love my job at the yoga studio and was curious about how the outside world is these days, I pulled my hair into a (truly) messy ponytail and went and I'm glad I did. It was worth the effort of putting on pants. I don't know how worth it my presence was for them, since I spent an inordinate amount of time carefully re-folding blankets and arranging items by color and staring at things instead of catching up on more pressing issues but it was good for me, as I love the people and the quiet there. And I love color-coordinating.

Also, I stayed awake for a record-breaking 5 hours in a row today, which is great progress. I am even wearing pants right now (mostly because I'm too tired to take them off but I will still celebrate it as a success).

I am slowly transitioning back to the land of the living, full of reluctance and hope.

But right now I think I'll go to sleep.

Tuesday, March 11, 2014

On the Road Again

So, it's over now. After the intensity, and drama, and action and inaction in waiting, and the struggle, the absence of all of "it", and him, seems impossible and bizarre in its own way.

On Thursday morning, after an unbearable night of realizing it was easier to be in the room with him than at home and in my own head (and after some late night texts assuring my mom that if there are ghosts there, she's really not interesting enough for them to bother) I packed a bag and moved in to hospice; my mother and I creating the saddest sorority of wondering and worrying and waiting as we helped care for him, the most dramatic and often horrifying slumber party of all time.

I ran home to shower and out for Starbucks only once before realizing that the outside world was even more difficult than that darkened room. Seriously, people playing tennis at the country club next door? You can just PLAY A GAME at a time like this? Under that traitor of a shining sun? Do you even know what some people are dealing with while you enjoy your sunshiney day? Bastards. Everywhere.

It was just too cruel "out there."

So I stopped going out. My husband brought my children to me and we enjoyed dinner at the dining room in the hospice house each night before retiring to the formal living room to wrestle and snuggle on the couches while watching Cartoon Network. I came up with plans to slay evil cheetahs with my 4-year-old nephew who happens to be the real Spiderman. I checked up on homework projects, because little kid dressing up as George Washington was of paramount importance during this time. I would hug and kiss them goodnight in the lobby and return to the room I snuck back to at least twice during this "family" time.

The days all run together, the endless hours, and I want to forget them and never forget them all at once. I'm not sure what my brain is going to do about that, I hope it works it out satisfactorily.

At one point I feared death with an intensity, and it was a concept that never really bothered me previously. It seemed so unfair that the heart could continue once the body had given up and as I looked down at what was left of  my dad, I told myself that there was no God. I believe there is something but there could not possibly be a benevolent, all-knowing being out there looking out for each of us. I felt alone, I felt like we are all alone, and life really is just what we make of it and that's that. I made plans to convince my husband that I could never let myself end up like this, to make sure I never ended up like this, to have the courage to help me not ever end up in this kind of diseased purgatory if I couldn't take care of the situation myself.

It was grim.

Things shifted though and I eventually decided it wasn't that bad. That I was in no hurry for him to go because I could sit here and hold his hand for a few more hours, a few more days once I realized how final the end would really be.

That there was a sacredness in this time of waiting.

The nurses would make me promise to get some sleep and I would promise that I would and they would promise they would wake me if there was any change and I promised that my fear that there would be change was exactly what prohibited sleep. THAT I COULD SLEEP FOR THE REST OF MY LIFE but could only hold his hand now. I was sleeping just fine on these two upright hospital chairs with a sheet, my hand jammed through the metal bars of the bed rail, there was really no reason to retire to my hospital bed (that many people have died on), thanks.

So we would listen to country music and hold hands and occasionally talk about whatever, and I know he could hear me even though he wasn't really there, and my brain would tell me this was scary and my heart would tell me this was my dad.

On the last night I knew it was the last night and after dinner I asked the boys if they'd like to say goodnight. little kid wanted to but was afraid, so he stood behind the curtain. I went around to my dad to loudly tell him that little kid wanted to say goodnight to him and heard the little voice from the other side of the curtain say, "Goodnight, Gramps. I'll see you--uh, hmm, I love you. Goodnight," and my heart broke into 9 million little pieces.

A nurse came in that night and shaved my dad's face and washed and combed his hair, a final act of kindness for a condemned man, and one that I will never forget for as long as I live. To give him that dignity, and to give us the chance to see a shadow of his former self was such a thoughtful and compassionate gift. Instead of the vague non-answer most nurses gave when asked for an estimate, she told me that we were in the last quarter run here, probably hours, and I told her I knew but was so grateful to hear her say that.

When I reluctantly, exhaustedly retired to my own hospice bed that night, I told my long-dead relatives that since they'd waited this long, a few more hours wouldn't hurt. I selfishly hoped he'd still be there in the morning, and he was.

I was up that Sunday morning at 5:30am. The sky was pink from the sun rise and it was reflecting off of the lake outside of his room, which had fog skimming over the top of it. I knew today would be the day. I opened the blinds and tidied the room and played our music and washed his hands and tidied up his nails. I told him that Steve Jobs said "Oh wow" three times as he passed and that I was excited about whatever was next for him. I told him to say hello to certain lost relatives of mine and to send me a sign from the other side, preferably in the form of making his lotto number finally win. I told him that we loved him and knew he loved us. I read the relevant Psalms scriptures. I held his hand and my mom and I rested our feet on his bed and talked about family memories while we drank coffee.

When Ralph Stanley's "Swing Low, Sweet Chariot" started, the pause between his breaths deepened and we knew. We said our goodbyes softly, calmly, with me still holding his hand. He took his final breath to the song, "My God is Real" and the whole scene felt holy and beautiful.

An answer to my question doubting God's existence? Maybe so.

As his breath left, mine returned. He immediately looked at peace and more like his real self. I felt deep relief for him, even while feeling great sadness for us. We sat for several minutes, in awe of how peaceful and lovely it was, how very perfect it was, before I went to get the nurse.

"He...went," I told her, unable to say anything else.

"Your dad?" She asked, knowing.

Yes. My dad.Went.

We later asked her to help dress him. Being a long time Willie Nelson fan and a lover of shock humor, my dad used to tease that we should roll him up and smoke him when he died, inspired by the song of the same name. We insisted that we would most definitely not be doing that, but I did buy him a shirt that says that for Christmas, which he loved. I guess we should have explained that to the nurse because she came out looking rather concerned.

"Thank you so much for doing that," I said.

"You're welcome. So...is that a new shirt?"

"No, I got it for him for Christmas."

"And...he liked...that?"

My mom and I had a quiet fit of laughter in the room afterwards and then a minute of panic as to whether it was too distasteful. The whole scenario was right up his alley though, I have absolutely no doubt that he would have loved it. We decided not to change it or explain it.

The guy who picked him up was my dad's type of guy--a little rough around the edges, funny, an ironic and worn tattoo of a devil on his forearm. He liked the shirt. In our brief time together, he happened to bring up the fact that he had scattered his parents' ashes in the same place my dad requested...a logistically tricky, not quite legal place. We appreciated the advice and felt he was in good hands and gave this stranger a warm hug after saying our final goodbyes.

As we stepped back into the sunshine and back into the land of the living, I turned to my mom. "That was good," I said as we hugged. She wondered how often people said that upon leaving there but agreed that it was.

And I went home and cried my eyes out, for the loss of him, and for everything he went through, and for everything we experienced, and all of the emotions and the unfairness of it all. I cried and asked my husband, "How will I do this?" meaning how will I manage all of these thoughts and memories and emotions for the rest of my life...and then I slept for 18 solid, blessed hours.

The human body is an amazing thing. And I'm not afraid of death as much as disease, and I know I am not alone, and I know I can do anything, and I need another nap or ten.

I will miss you, dad. It was an honor to spend the last week, and such a spiritual experience, with you. I'm so sad that you've left us, but I'm glad that you got on the road again and are going places that you've never been, and I feel so grateful to have seen you off on your journey.

Friday, March 7, 2014

Still

I'm still here. Still doing it. Checking to see if dad is breathing, checking to see if I'm breathing. We're both breathing and I'm not sure either of us wants to be. We're listening to Willie Nelson and enjoying laborious and mostly spilled sips of water, and occasionally playing the most depressing game of charades in the history of mankind as I struggle to understand his last requests.

Thankfully, hospice is full of real, live grown-ups. Upon this realization, the complete terror abated for the most part but it's still lurking around, reminding me that this is scary and horrible and we can't do it, even while we're doing it. While trying to fall asleep on my roll away bed at the foot of his, I would find myself hoping he would still be here in the morning and then praying that he wouldn't. This constant push and pull of the inevitable and what is the best for him, and the unthinkable and what is the best for me. Hoping for the end seems both insane and humane.

On the advice of the pamphlets they keep bestowing on us, I've told him he can go. I've promised him that what's next is a great adventure, and that he already won this fight and it's time for the next big thing. Last night he told me he had to go, and I thought maybe we were finally on the same page so I said, "Yes, you should go. Go ahead and go, dad, we've got it covered here," but then he asked where the car was and was trying to get up. I told him he was being picked up and that he was ready, that whenever he wanted, he could go. But I guess his ride still isn't here.

The hospice people are so nice. Sometimes I'm unsure if they are trying to keep me company or if they need me to keep them company. Okay, I'll pet your therapy dog, I say more for their sake than mine, wishing my hands weren't about to smell like dog. Okay, we can say a prayer, I say before retreating back to my own thoughts as they start. Okay, we can talk about how long I've lived here or the island I grew up on, if you want. I've even considered crying for their sake, because I sense an air of concern and expectation that I should. I encourage my mom to run her errands in the morning so she can miss these well-intentioned but exhausting social endeavors. These are good people, these are amazing people, I am just not capable of being one of them right now and luckily, I'm sure they understand.

And every few minutes, I think, "Oh God." It's not a prayer, or a plea, or an admonishment. It's more like my new version of breathing. I've tried actual praying but it doesn't bring me any peace. Instead I visualize every loved one I've ever lost, in every minute detail I can recall, each one of them individually, and then I beg them as a group to please come get my dad. That if I've ever needed them, if he's ever needed them, if we've ever needed them, it's now. That we're tired and we can't do this and to please come now and save us all.

And I spill water on him and ask, "What did you say?" so often that I cringe to hear it and sit here and listen to Willie Nelson with my dad while we wait for his ride.

I dread its arrival, with every ounce of my being, and yet I hope it comes soon.

Wednesday, March 5, 2014

In Limbo

I wasn't sure how to handle my dad's impending death with my boys. I've had plenty of practice thanks to our streak of bad luck with pets but I'm still not sure there's a right way to do this. How do you gently break the news that their gramps is dying?

I had been mulling this over in my mind time and time again, trying to figure out if transparency was the best way or if a surprise would be easier to digest. But the other day while driving in the car, little kid asked (as he does every day) if gramps was better yet.

I simply said, "Gramps isn't going to get better."

Big Kid quietly sighed and looked out the window. little kid looked perplexed.

"No? Well, does he feel better though?"

I wasn't sure if he got it, or if this was the right way. "Well, he's sleeping a lot now," I offered.

"At least he's getting good rest," he said, sounding tentative. It didn't feel like a success but it was all I could manage.

I'm in the thick of it now though, this muck of life, the residuals of it clinging to everything and all of us and it's overwhelming and unbelievable and appalling and indescribable. The other day he asked again, "Is gramps feeling better yet?" most likely in response to my quiet weeping and I again said, "Gramps isn't going to get better. That's how cancer works sometimes. Some people don't get better."

He put his arm around me and rubbed my back. I willed myself not to cry, remembering how scared I felt when I saw my dad cry about the death of his parents and brother.

"Do you know what that means, little kid; when I say that?" I asked, with a hint of desperation in my voice.

"Yeah, mama, I know. And I'm sorry. I'm so sorry for you. That's really sad," he said softly and sweetly. Instead of staying strong and keeping it together, I buried my face in his little neck and cried quietly while he rubbed my back. Just for a minute, just one delicious, ill-decided moment of comfort.

Yesterday was the meeting with hospice, a meeting put off for far too long due to his wild and impractical hopes of continued treatment. I had an intense moment of wanting to stand up and apologize, to explain that there's been a terrible mistake because I'm not a real, live grown-up despite my ability to fake it at times, and that I simply wasn't going to be able to do this at all, and then I wanted to run and run and run and run like Forrest Gump going cross country, just to run until I fell down (which wouldn't have taken long, as I'm recovering from the stomach flu since life is a bitch like that.)

I went to K-mart to run an errand too morbid to share and felt light headed and sick and didn't know if it was from the flu, the situation, or K-mart. Naturally, they chose that minute to test the fire alarms and despite the sirens and lights matching the intense urgency I felt on the inside, I wanted to throw myself on the ground and demand that it ALL stop that second--not just the sirens and lights, but everything, as if the fire alarm maintenance people at K-mart could just put everything to rest for me. An exhausted, maniacal laugh/sob tried to escape at the absurdity of it all but I knew that would be the end of me, that if I leaked any emotion at all, I would deflate completely so I quietly finished my purchase and did the whole, "No, I don't want a Kmart rewards card," routine as if I wasn't about to rip out of my own skin and run screaming.

The thought of what's happening haunts my every second, even while asleep. All of that complicated relationship shit? It goes right out the window when you begin to realize life is never going to be the same, and that all you can do is wait and slowly watch this come for all of us. Sure, I've had five years to consider it but it's impossible to conceptualize until you're actively doing it. It's scary and horrible and scary and horrible.

And scary and horrible.

Every few minutes alarm bells go off in my head and I take inventory of what's wrong. What can I fix? My dad is dying, I can't fix that. Then I realize I am not breathing, that my brain is so very busy that it has seemingly left my respiratory functions to fend for themselves. So I take a big gulp of air and feel a moment of success at having fixed that. Then again I remember that my dad is dying and I can't fix that. It's a cycle that doesn't stop, what should be the natural cycle of my breathing has become a constant battle of its own.

When not in action, I feel paralyzed. My body feels like it is weighed down and I feel on the verge of sleep at all moments, but never actually able to sleep. My kids and cats snuggle me constantly, sensing that I need it, knowing that for once, talk of Minecraft and Pokemon might actually be the distraction that I need. I try to listen generously while my brain continues its internal, non-stop, not pretty fireworks show, knowing that I'd rather think of Minecraft this time, I really would.

My dad often wakes up weeping and I wonder, is he thinking of the end at all times? Was he just dreaming of it?

And then I wake up weeping and I know that he is, that he was.

He's still him, despite no longer resembling the version of him that I know. He fell down the other morning and my brother ran to the room and asked, "Are you alright?" and he dryly replied, "Well, I've been better." Ever himself. He occasionally shouts, "One less dog," because his Chihuahua is too attentive of a nurse. Upon seeing me yesterday, he asked how my cat's tongue was (because my cat burned his tongue and needs daily vet visits in the midst of all of this), barely able to speak at all anymore but still curious about this mundane detail of life.

It's killing me. My childhood best friend has been through this twice and a long time ago when I told her she was strong and I wasn't sure I would be, she said that you just do what you have to do, and people interpret it as being strong. She told me that I would do it, in a voice with no uncertainty. I'm still not so sure.

In the meantime, I wake up in the middle of the night already crying, feeling too heavy to change positions and reminding myself to breathe. I wake my husband up with my silent sobbing and tell him that it's scary and it's horrible and it's scary and it's horrible and that maybe I can't do it but I have to but how can I?

The wonderful people in my life want to be there for me, want to help, are probably waiting for me to reach out to them and I just can't form words. I can barely breathe, I certainly can't say what I need--what I need is for this not to be happening. I need a time machine, I need my brain back, I need to breathe, I need Kmart to be quiet, I need people to know I'm not a real, live grown-up, I need this to happen quickly and quietly and to stop being so scary and horrible.

But no one can fix that.

So I remind myself to breathe and I do what I think a real grown-up would do and I guess that's working for now.

Sunday, March 2, 2014

Coaching

So the Odyssey of the Mind competition went.....oookaaay. There was one really good part, which was the ending.

Neither of my kids made it to the competition because they were still busy barfing. I drove the rented minivan full of props up there by myself and encouraged, cheered on, and instructed kids that weren't my own all day long, with hours of waiting between each division of the tournament. It's a good thing I really like those kids.

And they got it done. I thought they did alright but according to their score, the judges disagreed. Oh well. The kids thought they did great, and said they had fun doing it and that they were sad to see it end. I am not necessarily sad to see it end (at all) but I did decide to have a party for my team on Tuesday...maybe because I might miss them a little bit. I couldn't let that crazy day be our good-bye.

And during their party, I will maybe forget to tell them their actual numerical score (I sent them home before we got the results, since it was late, taking forever, and we had a long drive back). I will play up the positive feedback and add some of my own and feed them pizza and cupcakes and this will have ended well.

This will have ended well FOREVER because I'm not doing it again, ever, ever, ever, ever, EVER.

Amen.