The body remembers when the mind forgets

I've been having hideous anxiety for the past two weeks, and I couldn't figure out what was causing it. There didn't seem to be anything going on in my life that would trigger the kind of "anxiety so bad I think I'm having a heart attack" that I have been experiencing.

Then this memory came up in Facebook's memory app, and I posted it with commentary to my FB page:

And it occurred to me that I've never publicly told the story of the weeks between Jay's discharge from NIH and our return home. So here goes:

At the time Jay was discharged, he was having severe eating problems. The chemo used in the trial to knock his immune system down left him with unending nausea, which caused him to throw up most of what he ate, which led to him being completely deconditioned to eating.

It was in this condition that he was discharged from NIH, although he'd had at least one day of good meals and good sleep, so the consensus was that he would be OK. I disagreed with this decision, but it was made nonetheless.

We spent some time with Jay's dad and (step)mom after Jay's discharge and before they returned to Portland. It was a meal-to-meal struggle with Jay, but it was good to have help.

At one point between discharge on March 26 and our return to Portland on April 16, he and I traveled to the Maryland shore for a week. Hence the picture of the beach at the top of this post.

For that week, I was solely responsible for keeping him alive. I was terrified. We were four hours away from his doctors if anything had happened. We were in a resort town during the off-season, with unknown resources to take care of him in an emergency.

The recent two weeks of abject anxiety I've been having are an echo of that terror, written into my body even when my mind had utterly forgotten.

Things were a little better when we got back to Bethesda, although there was something in the house where we were staying that set Jay's cough off, so we had to move back to the hotel we'd been staying in originally.

I was so grateful when Jay's dad came back to Rockville, and then even more so when we got back to Portland and back to our support system.

Struggling in the dark

I'm going through a dark time right now.

Some of that is a literal darkness - the late sunrises and the early sunsets are difficult for me. This is always true; I always struggle this time of year. When it feels like midnight at 5:30 pm, it's tough for me to keep any light in my heart.

Add to that the loss of my mother in November, and the 18-month anniversary of Jay's death today, and I am abjectly struggling. My heart is tender, and anger is often close to the surface.

I am exercising most days, and using my light box, and trying to eat better. But nothing will change until the light comes back.

This is not me looking for sympathy, and really not me looking for advice. This is just me speaking my truth and not trying to hide from my reality.

Dreaming

I woke this morning from a dream about Jay.

In this dream, there was some legal thing that needed to be done, and it could only be done if Jay were still alive. So some doctors figured out that if they put blood back into him, they could bring him back to life.

After the procedure, Jay, Mother of the Child, and I were sitting in a doctor's office, where MotC was berating Jay for not having his bursitis checked out.  Jay was sitting by the window and was desperate to see the outside, since he hadn't since his resurrection. He struggled with the vertical blinds, and said how he hated those things.  I thought he meant the blinds, but he was referring to some white flowers outside the window, which in the dream were my favorite flowers. They made music if you touched the flowers. It stung that he so strongly hated them.

What this means, beyond an obvious desire to have Jay back, is beyond me. It was quite a strange thing to wake up from, and my day is still slightly off because of it.

Combine this with someone else's dream about a resurrected Jay (link found on Twitter), and I think what we get is that it's really sinking in that he's gone, forever gone.

Another portal of grief we're passing through ...

A year on

Tomorrow will mark a year since Jay died. That makes today the last day of my "official" year of mourning.

Of course, I know that doesn't mean that I'm done with grief. This month has shown me just how much grief work I have left to do. May has been a tough month, with my subconscious dragging me back through all the time in Maryland last year for the clinical trial and our time here in Portland after we came back from the trial. My dreams have been dark and weird, and I haven't had a good night's sleep in at least a month.

So a tough month to bookend a tough year, grief-wise.

I've spent this week reading my posts on his blog, finally having the time and emotional energy to read all the wonderful comments people left at the time.

I don't know where I go from here, except that every day I'm living my life and enjoying it. The act of moving out of Jay's house has freed something inside of me that was still locked down.

I will never stop missing Jay, and as I wander through his house packing my things, I constantly apologize to him for leaving him so completely.  I had a rare crying jag the other day when I discovered a necklace I'd forgotten I'd given him on my first visit to Portland, that he had tied to the side of his night table so it was near him always.

Tomorrow, the actual anniversary of Jay's death, I'll be heading to the coast for some time with a friend at Jay's favorite beach. It seems appropriate. Write the last chapter of that book, and move on.

To hike through dangerous weather you need twilight eyes

So today it’s been eleven months since Jay died.

On the one hand, I’m far enough past the worst of the first of the grief that my life is mostly my own again. I’m deeply in love with a wonderful man. I’m taking a little time off before looking for a new job. I’m spending this weekend getting my addiction recovery program back on track, being re-inspired and renewed.

On the other hand, not a single day goes by that I don’t miss Jay. The grief isn’t sharp and new anymore, but it’s still present in my body, like a dull ache that simply will not go away. Every night in my dreams, I’m reliving the days of the clinical trial and the days after we brought him home. Needless to say, this means I’m not sleeping well.

The most concrete expression of this endless grief is that I’m consciously going through the house and removing the remaining bits of Jay’s life. 

Sometimes this activity ends in amusement and bemusement. I was cleaning out the bathroom a couple of weeks ago, and discovered that when I did the bathroom clean-out right after he died, I was apparently completely convinced that he was coming back. I saved his toothbrush and his shaver, along with a bunch of other things he would need when he came back.  That was something of a shock, to realize just how disconnected my thinking was from reality, in that time of strong grief.

Sometimes this activity ends in a room that simply works better than it did. I moved Jay’s work desk out of the boundary between the living and dining rooms and into what is now my creative space.  That took the last ghost of Jay out of those rooms and made them into much more livable space.

It’s a relief to be living in a physical expression of my emotionally moving on. The more it becomes my house, the less it hurts to live there. It’s still not a good place for me to be - nothing will change the fact that he died in my living room - but every change makes it more livable.

Now to get through the year anniversary. I have no expectations of that day - it may be exquisitely painful, or anticlimactic. Won’t know til we get there, like all the rest of life.

A motorcade of 'meant to be's', parades of beauty queens

It's been a tough couple of weeks on my grief journey.

It's been a year since we took Jay to Maryland for the clinical trial at NIH, as my Timehop app is relentless in reminding me.  Seeing those daily reminders of that experience has sent me right back into a grief spiral that bottomed out (I hope) with me sobbing at a pair of scenes in the movie Transcendence.

I'm still in that place of grief where I can't remember the good times. All I can remember are the hard times, the bad times, the scary times.  All the joy, the frankly ecstatic times - all erased from my mind, bleached into faded sepia scenes printed on shredded paper, barely visible, unable to be seen and comprehended.

I still have hope that this will pass, and that all the wonderful memories will come back, whether in a flood or in drips and drops over the passing of time.

The thing that concerns me the most about this is that I have the sneaking feeling that regaining those good memories is also the key to recovering some piece of my old snappy, snarky, witty self. She's still missing in action, and I still miss her.

So for now, I continue to grieve both losses.

Don't write me no more letters, my mailbox is full of bombs

Back at the beginning of the month, I ended one of the final rituals connected to the last year or so of Jay's life.

For anyone who doesn't already know, Jay used to have waist-length blond hair. You can get the idea from this picture of him:

This was long before I knew him, but it made me angry at the universe that chemo took his beautiful hair.

So somewhere along the line in 2013, I decided I was going to stick a finger in the eye of the universe and let my hair grow until he was either dead or had his hair back. At its longest in May, a few days before he died, it looked like this:

I got a trim then, which took a little bit of length off, enough to make me less crazy.

I didn't get it cut again until January 2nd, when it looked like this:

It was long enough again to make me crazy, and the whole purpose in keeping it long was utterly over. So I got it cut much shorter:

So the last visible bit of my grief is gone, the last sign in the world of my fight against the wishes of the universe is finally gone.

I'm glad to have my hair shorter, but it makes me sad, too, that my bit of magical thinking had no effect on the world.

I'm not looking back, but I want to look around me now

Jay has been gone six months today. It seems like he’s been gone forever, but there are still times when the grief is fresh and strong enough that it seems like only yesterday.

The grief still catches me off-guard from time to time, a punch in the gut that leaves me sobbing. Any sight of his life mask will do that, a song lyric, a picture on the digital frame. It happens infrequently, and generally passes quickly, but the grief is always there, like a pool just under the surface of my life, sometimes quiet, sometimes stormy.

I realized sometime recently that I’m in the ultimate long-distance relationship with Jay, albeit with somewhat less communication than might be desired.

I also realized that he’s been gone a quarter as long as we knew each other. That is sobering.

On the positive side, the universe has surprised me by showing me the face of love again. I honestly didn’t know whether I would ever be able to open my heart to love after Jay died. He and I talked about that a lot, with him worrying that I would purposely close myself off, which he surely didn’t want. And I wasn't so much afraid of closing myself off, but of having a heart that wouldn't open again.

So to find love again so soon and so strongly - what a gift.

And to realize that I have a life I love, full of laughter and friends and fun - this is what I wanted for myself when my husband left me almost four years ago, but that I couldn’t find either where I was living or because of who I was there. Now I have it, and what a blessing it is. It’s not without its challenges, but I’m learning and adjusting and figuring out how to make it all work.

This will likely be the last of my monthly updates on my grief process, unless something significant happens. No doubt I will post on the year anniversary of Jay’s death - that will be a hard day.

But for now, life goes on, and the dance is lively and lovely.

And all of your weight, all you dream, falls on me, it falls on me

Just a quick post to say that my body and heart are all too aware that the 6-month anniversary of Jay's death is coming up quickly.

I'm tender and quick to tears again. Little things and big things trigger me. As always, I'm letting the tears flow when I can, letting them wash away the pain.

I'm dreading the holidays, but I'll deal with those emotions when the time comes.

So for now, more tears, more grieving, and eventually, more healing.

Lost voices

I've been spending a lot of time this week thinking about how sad it makes me that Jay's voice has been silenced, both in the literal sense of never hearing him speak to me again, and in the metaphorical sense of him never creating new stories. This line of thought has driven me to tears again and again.

Last night, I was enjoying listening to music. I started out shuffling Rush on my iPod, then was seized by a desire to listen to Big Country, who I haven't listened to in  quite a while. And I was enjoying myself quite nicely, until I realized that I was listening to another lost voice. The band's singer committed suicide in 2001 (see my post here for previous thoughts on this).

Sitting on the sofa, I burst into tears.

So here am I, grieving for all the lost voices in the world.

Another rough patch

I'm having a rough week here.

This past weekend was the fan memorial for Jay at Orycon. I didn't participate, other than bringing Jay's tux, chili pepper aloha shirt, and flame sneakers to the con for display at the memorial.

But it was triggery for me, even so. I shudder to think what state I'd be in now if I'd gone.

On top of that, Jay's bench has come back from the engraver, freshly inscribed with his name and dates and his epitaph.

That hit hard.

So I'm back in a rough sea of grief after a patch of relatively smooth sailing.

I know this will pass, and that all there is to do is to get out there and live life.

So off I go, once more.

Safe on the shore I've been sleeping, faced by the thoughts I've been keeping

Five months on

Here we are again, at the turning of the month, another anniversary of Jay's death.

I think this is the first anniversary where I don't know what I'm feeling. Less pain, less overwhelming grief, yes - those things are true. A greater sense of moving forward, of moving away from our life together and into my life - this is true, too.

I'm in an in-between place, neither here nor there, unsure of what comes next. But for the first time, I'm feeling confident about not knowing.

I suppose it's possible I've just dug myself a comfortable rut, but this doesn't feel like that.

Still miss him, every single day.

And yes, this first-of-the-month thing continues to be difficult. Last night, I had the first genuine crying jag I've had in quite a while.

But life goes on.

Misc updatery

A couple of unrelated things make a post:

• We had a big rain last weekend, and there was some minor flooding in my garage and downstairs bathroom., as well as major flooding in the other side of the duplex. This has led to major cleanup projects, which in turn will lead to waterproofing and other recovery. As I said on Facebook, this makes me very glad I'm a renter. And it also has the effect of filling my guest room downstairs with every single thing that used to be in the bathroom, except the toilet.  Just when I thought I might have a handle on getting that guest room cleaned out and usable - ah well. At least now I'm going to be forced to deal with all the stuff that was in the bathroom - this is a good thing.

• I'm back to doing some heavy emotional processing, as evidenced by my constant exhaustion and hunger. It's not surprising, given that we're coming up on the first of the month again. But it's disconcerting to be back in that place of emotional upheaval after a couple of weeks of relative calm. But I know that this will pass, so I'm just riding the waves and trying to get some extra rest and calories.

Catching up

I know I've been quiet here lately. I've been doing a lot of thinking and a lot of processing, and haven't really come to any conclusions, hence my not being here talking about it all.

There are so many things that have changed for me in the wake of Jay's death, and so many of them are things I had given absolutely no thought to before he died. A lot of them are related to whatever relationships I'm going to have as time passes. Another lot of them are related to what I want my life to look like, whether I'm single or in the middle of a passel of lovers. A surprising number of them are about where I want to physically be in Portland.

I'm trying to remind myself that this is an unprecedented opportunity to remake my life pretty much how ever I want to, within my financial and emotional limits, although those latter may be able to be challenged and stretched a bit.

It's all still a jumble in my head, as you can tell from the ramble I'm having here.

But just know that I'm still around, still thinking, still grieving, but still also moving on into whatever the next phase of my life will be.

I'm still moving step by step, but it's less "one foot in front of the other" and more "slowly learning this new dance step". That's a vast improvement.

Knowing the name of the portal

I finally figured out which portal I walked through recently.

I'm starting to move on.

It feels profoundly wrong to be doing this so soon after Jay's death. I apologize every day to the pictures of him on my dresser. Even though I know it's what he would have wanted for me, I feel guilty.

But the process has begun. I set my relationship status to single on OKCupid (and then went on a fantastic first date). I haven't quite yet felt the need to change my relationship status on Facebook, but then all my friends there know me and know what I'm going through, and the truth is I am still in a complicated relationship with Jay.

As I said to a friend at lunch yesterday, in my heart of hearts, I'm still waiting for Jay to come back. But knowing how my life works, as long as I'm waiting for him to come back, he won't - but the moment I stop waiting, he will.

I know that sounds crazy, but that's how my bargaining/denial/disbelief is expressing itself these days.

All the usual disclaimers apply, especially the one that watches for the changing of the month.

But I've taken that first big step into the rest of my life.

Leveling up? Achievement unlocked? Something like that ...

Passed through another portal since the Crater Lake trip.  I'm not quite sure what happened, but something surely has.

I'm back to a place of relative acceptance, with relatively little emotional overwhelm. I'm still sad and still grieving, but everything is less painful than it has been.

I feel stable for the first time in a long time.

I also have no illusions that this will last, but for the moment, I'm coping well.

We'll see what the next little while brings, especially as we approach the start of November.

But for now, doing pretty darn well.

Anniversary trip

This past weekend, I drove down to Klamath Falls so I could reprise Jay's & my unsuccessful trip from last year, to actually successfully see Crater Lake and celebrate my second anniversary of moving to Portland.

Friday, I ended up taking the route that went right past Timberline Lodge, so since the last time I'd been there it was so foggy I couldn't see Mount Hood, I stopped in to see my old friend. He was looking fine:

View of Mount Hood from the amphitheater behind

Timberline Lodge

I spent Friday night in Klamath Falls, and drove out Saturday to see Crater Lake.  It was nothing short of spectacular.

It's impossible for pictures to do the lake justice. It's so enormous that all sense of scale is lost. Just remember - this lake started out as a 12,000 foot high volcano that exploded and left this hole in the ground.  My brain just can't cope with that.

And my heart had a tough time, as well. As gorgeous as the lake was, and as glad as I was to finally get to see it, Saturday was still a time of sadness and anger. All the usual grief stuff was there with me. I wanted nothing more than to turn to Jay and share all those moments with him. His death blew a huge hole in my heart that is certainly not a pretty thing surrounded by hills and pines.

Ah, well. Happy anniversary to me, anyway.

More shots of Mount Hood and Crater Lake at the Flickr sets.

It's a far cry from the world we thought we'd inherit

This weekend is tough. Bad enough that this week brought the four-month anniversary of Jay's death. But today is my two-year anniversary of moving to Portland, and I'm celebrating it alone.

That's not meant to be a sweeping dramatic statement, just a statement of fact and emotional truth.

This weekend I'm reprising the trip we took together last year to celebrate this anniversary, driving down to stay in Klamath Falls and visit Crater Lake. We were thwarted last year in actually seeing Crater Lake by the government shutdown.

So here I am this year, on my own, going to see the sights we didn't see together last year.

So much changed over the last year, and looking back over it all, I can't even begin to think where I'll be this time next year. While Jay was alive, we were living in the two-month box - the time between his scans. Right now, I'm living in the one-month box - the time between the start of months, every turning of the calendar page another stab to the heart.

But I'm starting to feel the stirring of an emotion I consciously shut down while Jay was alive and ill - I'm beginning to feel hope for the first time in a long time. I don't know hope for what yet, maybe just hope for a new life. But I can feel it beginning in tiny excited flutters, from time to time, in and around the grief.

So I mark this anniversary, knowing that this time next year, I'll be in a different place, and looking forward to seeing where I might be.

If you don’t bring up those lonely parts this could be a good time

4 months on - a ramble about where I am

I'm still struggling daily, but I seem to have processed something large in the past month, setting down some big burden.

I'm still sad, sometimes unbearably so. I'm still lonely, sometimes unbearably so.

But I'm also feeling energized by the change to autumn. This is always the time of year my energy starts rising again. It's that old feeling of excitement about school starting. It's hard to feel the season change and know that I'm just that much further away from the life I had with Jay. But it's good, too.

I'm working hard to make this life into something I want to live. I'm learning more about my own fears and what they make me do and what they keep me from doing. I'm learning how to harness my creative drives to express things I could never have expressed before.

I'm doing my best to get back to being able to remember what I was like when Jay was alive and we were happy. I can't stay that person forever, have already moved away from being her, but I don't want to lose her entirely.

A month ago, I said this:

Harder for me is the psychological reality that I'm still waiting for Jay to come home from whatever trip he's on. The disbelief that he's truly gone is pervasive and deep, and I think this, too, is just part of my normal-for-now.

 This is still true.

Jay's been appearing my dreams a lot lately, which is unusual. Even when he was alive, he almost never appeared directly in my dreams, but appeared as other people who I knew to be him. Now he mostly shows up as himself. I don't always remember the dreams, but I know when I've dreamed about him.

I still miss him terribly, and am still angry at the universe for cutting his life short. I doubt those things will ever change, and I'm sure I say them every time I write one of these posts.

Driving down the razor's edge between the past and the future

Edging up to four months without Jay, I'm coming to realize that every turning of a new month will be a reminder of my path away from our life together. I wonder how long that will last, or if it will last forever.

This has been an excruciating week for me, a week of exquisite and nearly unending pain. The difficulty I was having related to waiting for my medical test results didn't help. I think I'm in more emotional pain now than I was right after Jay died.

I keep waking up each morning to the realization that whatever I do with my life from this moment on, I do it without him. I do it only with the memory of him. That emptiness threatens to suck me in every single day.

Part of the problem is that the time in the clinical trial has nearly overwritten my memories of the good times. And god, did we have good times. But the pain and fear of the trial and of watching Jay slide inexorably toward death is, right now at least, carved more strongly on my heart.

This is one of the reasons for my continued passes through his blog. I want to see who he was before I knew him. I want to see what he said about all our good times. I re-read our early emails for the same reason - to be reminded of the strength of our love and the power of the joy we had in each other.

He was an incredible gift to me, and I don't want to squander that gift.

But I am plodding right now, barely putting one foot in front of the other.