To My Beloved Husband~

To my beloved husband, Chuck D, as we approach the 5th anniversary of your memorial service, which we held 6 months out from your death…
I know I did everything as perfectly as I could in those few short weeks between finding the cancer, our hospice time, and your death.
I know this more than I know anything else in my life.
And yet…
Doubt lingers in the corners of my mind and pops out in my most vulnerable moments, such as now. Such as everyday of living without you.
Just one doubt.
Was I at your side enough in our hospice time? Should I have moved into that hospice room with you and not moved until I had to? Did I err in going, every so often, back to our rented condo, to sleep…even though I never slept when I was there. Shadows of your impending death were ever on my mind. I knew I was a widow in waiting, no matter where I was. I didn’t need to hear a clock ticking away the time: my heart was more of a reminder than any clock.
I didn’t stay with you every night, and that thought has more power over me than I want it to.
There were many nights that I did, and I was there every day, but I wasn’t there every minute, even though I wanted to be. What I wanted was to lay down beside you and never move. Hold onto you for every breath. Breathe with you and for you. Take your place in that bed, with cancer attacking my body relentlessly.
I wanted to do all of that.
But I know you worried for me. I know that you watched me as I moved about your room. That you spoke to others of your concern for me. That you loved me beyond anyone else and you would want me to take care of myself, even as I cared for you.
So I preempted the conversation you might have with me, and took it upon myself to kiss you good night and return to our rented condo, having ensured that one of the kids was with you overnight. They would care for you as lovingly as I could and I entrusted your care to them so that you wouldn’t worry about me.
I was told after you died that you would ask where I was at times, and I wonder. Did you feel that I abandoned you on those nights? Or for the few hours I’d take to grab food with one of the kids? These thoughts aren’t logical, I know, especially as I consider the source from which the words came…but I wonder anyways.
I wanted to curl up beside you. I wanted to be so close to you that I became you and our bodies would be one body and even though that meant I would feel your pain, you…you would feel more strongly than ever, the depth of Love I had for you, and that would be so much more powerful that the pain of the cancer would be meaningless. I wanted to clutch your hand in my two hands and squeeze hard and hold on…but I knew I had to tell you that I would be okay and that you could go whenever your body and mind had done this enough. I wanted to look into your eyes and stare into forever…not the forever of death but the forever of a passionate Love. I wanted to turn back time and live our together life again and again, an endless round of Groundhog’s Day…so that our life together would never end. I wanted my fingers to trace the bone of your brow that I’d stroked so often over so many years, run my hand gently through the hair on your arm…while you still breathed. I wanted to breathe deeply of the breath we both shared and make it last forever…not watch as you suffocated and took a sharp inbreath and…nothing.
Instead, because I knew you would want me to take care of myself in whatever way I could, I would kiss you softly and tell you I’d see you in the morning and return to that condo and lie down on that bed that was never ours…and stare into the darkness. Waiting, waiting, waiting, until I could rise and shower and drive back over to your hospice and kiss you good morning and begin a day of living in the moment and offering Love in all the ways that I could while I shattered again and again, watching you disappear from me.   532901_10152250938645400_1112002834_n
I know you would forgive me, my beloved D. I don’t know that I can forgive myself. I know what you would say and how you would say it and how you would hug me and love me even more, for having cared for myself to whatever degree I was able to.
This one doubt crowds my heart sometimes, and mixes in with the godawful missingness of you.
As we who love you approach the 6-year mark of the day of your memorial service, all that my heart will permit me to say to you is this…
I miss you. I love you. I crave your touch. If I could only gaze into your eyes gazing into mine. If I could tuck my hand into yours and feel our fingers intertwine. If I could feel the strength of your arms enclosing me. My life is so different from what it was, with you. I’m so different, in ways that make me feel like an alien to my own self. IMG_4895
God, if I could just sink into your welcoming embrace and hear your heartbeat in my ear. Wrap my arms around your waist. Sink into all that you were, with all that I am, and breathe in, again, the peace that was…us.

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Let~

Let the moments stop. Let them stay where they are.
Let them take me back in time.
Let them morph into the unknown future.
Let me be present.
Let me disappear.
Let me be numb.
Let my emotions riot my heart.
Let shock quiet my system.
Let me remember times past.
Let me see only the joy.
Let the pain recede.
Let him see Love.
Let our grief morph into Love.
Let our hands touch lightly.
Let our eyes speak our words.
Let our voices murmur gently and softly through the night.
Let our Love shine and shimmer.
Let your body release your spirit.
Let my tears fall.
Let the blankets cocoon you warmly.
Let my hands reverently lift your spirit gone body to the gurney.
Let its’ wheels carry you away from me, down the corridor.
Let flowered bouquets cover you.
Let my hands be steady, gently pressing the switch of the crematorium doors.
Let my last service of Love for you connect me to you, wherever you now go.
Let my Love for you rage as brilliantly as the flames that take your body from me.
Let Love live.

From the Depths of my Soul~

 

My dearest love, my beloved husband.  D.

It’s 4 years since you and I drove to the ER at Eisenhower Medical Center in Palm Springs.  It is now 4 years since you and I began our final Happily Homeless travels, travels that began on a sunny May day in NJ in 2009, as you got into the UHaul truck with the few of our belongings that we’d kept after the sale of our home, and I got in our car, having just signed the papers and closed on our house, and we headed west to drop those few things into a storage unit in Indiana and visit with your mom for a few days.

And then we headed south and west and our adventures began.

We had our last 4 years together traveling the USA, hiking trails, climbing to the highest heights, discovering history at our National Parks, visiting family and friends, gazing upon views I only ever thought to see in books.  I pushed boundaries I never thought to push, and we fell more in Love each and every day, rejoicing in the times it was just us, far away from responsibility and distractions.  Just us.

Life and reality hit hard with your first cancer and shocked us and horrified us through all the surgeries you had to endure, but endure you did…we did…and we didn’t let it stop us.  You came through it and we continued on.  You were a cancer survivor.  I’d never met a cancer survivor before.  The big C was a disease that had already taken so many from me, and I cried when I realized you…my beloved husband…you were the one I got to keep.

Until this time 4 years ago, when I took you to the ER, your breath raspy, your body doubled over in pain, your face creased as it had never been before as you struggled to maintain some sense of self.  For the first time, though, you couldn’t hide it.  You couldn’t reassure me any longer.  I knew the truth of what was in front of us even before you did.

These 4 years of widowhood, my emotions wouldn’t allow me to write to you.  I haven’t been able to speak to you.  All I’ve been capable of saying, as I’d look up at a night sky glittering with stars, out on my own travels across the USA, is…I love you.  Find me.  I don’t know where you are.  You find me.

I still can’t speak to you, but I need to write to you.  I need to force my fingers to type words to you.  I need to vomit words of pain and grief that you, my beloved, are gone from me.  Have been gone from me for almost 4 years now.  Speak to you of my anguish and horror as I watched the cancer decimate your strong body, watched the drugs muddle your mind even though we tried as hard as we could to minimize those drugs, wanting you to be as present as possible.  You were insistent on that and I wanted to honor your wishes even as it added difficulties into a confusing time.

There are those who say that power shouldn’t be given to memories such as pour from my heart and mind and soul; memories that deepen grief and pain and loss, but I disagree.  The very few weeks we spent, 4 years ago now, as test upon test occurred, as I watched you lay in a hospital bed, as our kids gathered, as you and I found tumors exploding in every limb of your ailing body, as doctors spoke to us of cutting edge treatments that sounded impossible to me, because I knew…I knew…on that very first night in the hospital, your time on this earth was so limited that there was no time no time, to even attempt such treatments.  I watched as if outside my body as I spoke to the social worker, begging him to tell me how to tell you that we had no time.  How do I tell my husband, this man who is my life, that it is time for us to find a hospice, that we must prepare as best we can for the impossible and unbearable time of his death?  How do I tell him that there is no time for treatment without him thinking that I want him to die?

And then going into your room and telling you that I will do anything you want to do I will make it happen I have your back but I don’t think we have time and I think we need to find hospice. 

Gazing at your face, D, in those moments, as I stifled my sobs through the words I had to speak to you…the look on your face is sealed into my being forever.  A few very quiet ticks of the clock passed and then you took my hands in yours and you said okay.  And I sobbed more, and we spoke of the magnitude of this, and we began to realize that we were saying goodbye to us, and you said how you would miss us more than anything else in your world.

You signing the papers that would admit you into hospice, the ambulance ride, the 3 weeks of multiple hearts breaking as the cancer gnawed at your body and ate huge chunks of who you were, you staring into the mirror, a look of confusion in your eyes, striving to recognize the narrowed face and sharp nose of cancer staring back at you and me taking your face in my hands, gazing directly into your eyes and saying you have been my hero you will always be my hero…god, every fucking moment of horror and drugs and breathing machines and treatments and doing slow jogs through the family gardens to work off my shock and anger and despair and every other goddamn physical emotion roaring through my own body…and returning to your room and your side to offer you all the Love that was in my body and soul, all the Love that you’d given so freely and willingly to me in our 24 years together, your vow of Love that you spoke, the vows of Love that I spoke, on our wedding day that we lived and honored and grew, every day that we had together and apart.

How can I not honor and remember our final days as we stumbled through the halls of hospice and spoke words to one another that I can’t remember?  How can I not honor every painful and loving and sacred moment of those moments that lasted for 3 weeks and for eternity all at the same time?

These almost 4 years later I remember, and I honor those days and I honor you and me and us.

“I remember the night.  I remember the sound.  I remember the light, when the moon came ‘round.  The night flowers bloomed, the air so sweet.  I remember you. I remember me. “ (Sara Watkins)

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This Carrying~

A dear friend and Air Force widow sister said to me last weekend, in response to my endless questions to her about this grief (she’s 6 years out), and time frames and, oh, you know, everything…she said this to me, and I’ve reflected on it in the days since.

It isn’t that it goes away.

We just get stronger, and we carry it differently.

Such simple words but they make sense to me, at a time when, really, so little makes sense in my world.

I closed out my counseling and trauma therapy today, and I’m spending this week preparing my return to the road, continuing my Odyssey of Love.  Sunday will see me on the road East in my rig, PinkMagic. The trauma feels more outside my body than inside my chest as a meat slicer, as it was when I began therapy.  I can see it and sense it but it isn’t slicing me to shreds. The trauma protocols that my therapist led me through have done that and I appreciate the time and energy that she gave me as she companioned me through this.

But, I’ve realized, of course, that the missing-ness is just as much there.  How can it not be?  I’ve realized, too, that when the word acceptance is thrown about in grief, that, for me, it isn’t so much about accepting that Chuck is dead (which is fairly evident every day, right?) but accepting, each day, that I must live without him.  Oh, the impossibility of that…

Chuck died April 21, 2013, almost 3 years ago now. God, that’s incomprehensible to me.  How is it that I’m still alive?  That the stress of grief hasn’t killed me is one of the great mysteries of life to me.  I freely confess that I don’t know what hope looks like. I can’t grasp the concept of forever.  As in, he’s gone forever.  I don’t know what it means when people tell me I need to choose happiness, or joy, or set my mind to any other emotion.  As my counselor said there isn’t an on/off switch for this…

What I can understand, at least to some degree, as my sister widow said, is that I will get stronger (and by stronger I mean physically stronger), and that will help me carry it…the memories, Chuck’s absence from my life, the missing-ness. I must make myself physically stronger, and it is in in my power to do so.

I’m returning to the road, and I’m doing it in a mighty explosion of pink, with wings on my rig flying me down the road, clothed in pink armor, with a determination to live loudly, strongly and emphatically, leaving no doubt along the way that I have been hereand here and here, sharing hugs along the way with those I meet on the road.

I don’t know what a future looks like, anymore than I know what hope looks like, but what I do know is that I will continue to do what Chuck always said to do; suit up and show up and let the day unfold.  Doing so is what will make me stronger so that I can carrythis.

Because, of course, as I carry the grief, I carry, right along with it, the remembrance of a love that was bigger than life itself. And there is, in that love, all the magic of the Universe.

Love and grief and magic, the unbearability of it, the strength of it…all of these things, and the open road…carrying it all, as I become…

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The Why of My Currently Lived Life~

One year ago at this time, the nightmare of coughing and pain in the lower back and trying to figure out what was going on took us into the hospital and then hospice, as cancer was diagnosed and Handsome Husband and I realized this was the end and time moved faster than it ever did and yet slowed to a crawl.

We (me and our kids) documented every moment of that time, in the words we wrote and in pictures we took  Yes, the pictures are incredibly intimate and, both then and now, they can send pain coursing through you.  I know that.  I knew that at the time.  How could they not?

But look closely at the pictures and see the pictures in the words.  Do you feel the love that coursed through us as we took those pictures of one another as we took him walkabout through the hospital corridors, or sat with him or tended to him?   Yes, death was approaching but the real happening was love and that fairly glowed.

We had friends and family all around the country, texts and phone calls coming in faster than I could respond and my voice mail would fill up and we knew everyone wanted, needed, to be a part of this ongoing final time and I was okay with that.  We didn’t hide anything.  We weren’t going to hide death.  It would have been so easy to do that.

Our culture tells us to be positive and upbeat and look at the bigger picture and be happy.  Illness and death are uncomfortable and mostly we like to shuttle all of it into the hospital behind closed doors and once death happens, family members are given a few weeks, maybe a couple of months and then just please get on with it.  Most certainly don’t talk about the death, especially while it’s happening.  Don’t show me your grief afterwards.  Come on, be positive!

When my husband went into the hospital, and then into hospice, yes, it was horrifying, it was ugly in so many ways, it was every word you can imagine and it was beautiful because of the love and we weren’t going to hide it away.   It made some people uncomfortable and they didn’t need to look.  But it was life and our grief that is still so raw is life and I wanted to shine a light on, well….life.

My heart and my mind are re-living those moments of last year, as are our kids and all who loved him and so yes, I’m sharing again those words and pictures in a retrospective on our face book page.  No, it isn’t healing for me to do so.   It’s simply the video that is playing in my mind as I go about my day.  Many of you lived through that time with us.  In the past year as I’ve been on the road on my own, I’ve met hundreds of people and you know the overview of our story but not the intricacies of it and the real beauty of it and not the real-ness of the end of it.

Death is as much a part of life as birth and both are sacred times and I refuse to hide from pain as much as I hope that someday again I’ll seek joy.  Every moment of the final travels of me and my husband as Happily Homeless were real-life moments.   Each day, on our face book page, I’ll introduce you to our kids, who brought their gifts of love to their dad and to me, and the friends of AA and the military who came across country to have time with him and pay their respects and say goodbye and our kids’ friends who brought love to support us.  And you’ll gain more understanding of the intensity of my Odyssey of Love.

That time was worth noting.  It is worth noting.  Once upon a time Handsome Husband and I had a love story.   It continued until his final breath and I still carry it in my heart.  His days in hospice were filled not just with cancer and pain but with so much love.  I determined to surround him with it, immerse him in it and so fill him with it that it would be bigger and brighter than the cancer and it wasn’t done perfectly but it was done and he felt it.

He knew nothin’ but love and that’s all that mattered~ 521720_4633848285294_1629378181_n

It’s in the Numbers~

Handsome Husband  loved numbers.  He would compile our miles traveled, tally up the military bases and hotels  we’d stayed,  the National Monuments visited-he loved those numbers.  Me, not so much.  My tally of anything is vague, mainly because I get more satisfaction with the pictures those numbers represent.

Except.

We stayed in Arizona for 3 months last winter.  He started getting noticeably sick.

It took us 1 month to travel from Arizona to southern California.  During that time we hiked twice.  At Red Rocks National Park, outside Vegas, we hiked 1 mile back into the rocks to view the petroglyphs. It went okay but he was tired.  We also walked around Manzanar Relocation camp, in California.  We’d come upon it unexpectedly and I’d always wanted to visit there.  So we did.  He was okay for that, though he was getting very thin.

At Death Valley, we hiked 1 mile back to Natural Bridge Canyon.  We met some other hikers and thoroughly enjoyed it.

Handsome Husband hiked an hour’s hike up Dante’s Ridge at Death Valley.  He was thrilled.  Excited to be there.  I stayed down below and, in a moment of creativity, decorated my side of the car with flower stickers across the dashboard.

We danced for maybe 4 minutes alongside the road in Death Valley on our last night there, as we drove back to Furnace Creek Ranch.  To Chicago’s “You’re My Inspiration”.   He wasn’t sure he had the strength for it.   He did.  It was magical.  I loved his arms around me.  It was our last dance.

We stayed at 3 military bases between Arizona and Cathedral City, California.   When we arrived at the Marine lodging, we parked under the overhang so he could check in for us.   He had to step off to the side of the building where there were some bushes so that he could throw up.  The pain was that bad.  We thought it was the die-off from the systemic fungal infection.  It makes me want to throw up, remembering back.   Knowing how much he concealed from me.  I knew most of it, but not the degree.   And I want to rage against my frustration at the not-knowing.  How could I not know?  Except that he didn’t want me to know.  He didn’t want to acknowledge the severity even to himself.

There were 14 steps up to our condo in Cathedral City.  He was able to carry a pillow and our camera up those steps.  Separately.  I struggled to carry everything else.  He felt so helpless watching me.  He apologized continually.  I hugged him and said it didn’t matter.  It was okay.  We’re a team.

He made 4 trips to the Yay Institute 3 hours away, seeking treatment for what we thought was his systemic fungal infection.  On the first visit, after reading the computer readout, Dr Yay told him he was a very sick man.  But no x-rays were taken that would have revealed the solid tumor of his left lung.

He made 5 trips to the chiropractor we found in Cathedral City, for what we thought was a pinched nerve.  The chiropractor told him the left side of his back had seized up into a solid block.  We now know that was the fucking tumor.

We made 1 trip to the Eisenhower Medical Center ER in Rancho Mirage.  He had 1 tumor in his left lung that completely destroyed said lung.  He had a smaller tumor in his right lung that collapsed the bottom 1/3 of that lung, rendering it ineffective.

He had 1 huge tumor in his pelvis that blocked his bowels and caused horrible pain.

He had 2 very large tumors externally on the inside of his thighs.

The tumors that destroyed the rest of his body were uncountable.

He died on April 21 in the year 2013.  At 11:21 pm.

I’ve traveled almost 3000 miles since he died.

It’s been 4 months since he died.  That’s longer than we were at the condo in Cathedral City where he died.  Yes, he died.  He didn’t pass.  He didn’t cross over.  He died.  Those words are important to me.  They make it what it is and doesn’t gentle it up.

Numbers.   He would have tallied everything exactly.  I’m working with rough numbers through all of these specs.

What I know definitively is that my 1 life was forever changed by loving him, and being loved by him, for 24 years.  23 of those years we were married.  The full 24 years were years of passion and happiness for both of us.

What cannot be numbered are the times my 1 heart has shattered and shredded and died, only to start beating again so that it can repeat the process, each beat of that heart relentlessly pounding out my new dance  rhythm.  Gone. Gone. Gone.  IMG_0056

The Conversation That Wasn’t~

An if he were alive conversation (a heated one), Handsome Husband and I would be having, upon me finding out he’d told his daughter, who is a lovely person but not his wife and this isn’t what we’d agreed upon numerous times, that he wanted her to be his medical advocate.  (Which, by the way, was never put in writing.)

Me:  What?

Him:  I just wanted to protect you.

Me:  Protect me from what?

Him:  I know you’re tired.  I’ve been dealing with so many health issues since my first cancer.  You’re tired of dealing with me dealing with all these issues.

Me:  What?

Him:  You’ve said so many times how you don’t want to deal with this any more.  How tired you are of talking about vitamins and nutrition and what I can and can’t eat, and cancer and fungal infections.

Me:  Yeah, I am.  So?

Him: The cancer is back.  I’m sick.  It’s going to be nothing but medical decisions from here on out.  I don’t want you to have to do that.

Me: Didn’t we sign papers years ago, after talking about this very thing, that you would do for me and I’d do for you?  Isn’t that what married people do?  Didn’t we talk about this very thing when you went into the hospital?  And when you came into hospice?  Didn’t we agree that I had your back, that I’d make sure you weren’t in pain, that your pain would be managed?

Him:  Yes, we did.

Me: Then what the fuck?

Him: I want to spare you. I want you to not have to worry about the medical stuff.  I want you to be able to just be here with me.

Me: Doesn’t being with you ALSO entail me making sure that you’re okay physically, in spite of the fucking cancer?

Him:  Yes.  And we did agree on it.  And I know you’ll make sure my pain is managed.  I didn’t, I don’t want you to be burdened with any decisions.

Me:  Burdened?  Are you fucking kidding me?  You’re my husband!  You have fucking cancer!  Yes, I’m tired of the whole damn thing!  But that doesn’t mean I’m quitting, for Christ’ sake!  It just means I’m tired of the whole damn thing!  So what?  Aren’t you tired of the whole fucking mess?  Aren’t you tired of our lives being taken over by this damn, fucking, cancer?

Him:  Yes. I’m tired of it all.  I want us back too. Just like you’ve said so many times.  Don’t you think I want our lives back?  But we’re not getting our lives back.  The cancer is back.  I’m in hospice.  I’m going to die. Soon.  And I wanted to spare you this part of it.  The medical part.  So I told my daughter I wanted her to help you.  Not take over.  Or at least that isn’t what I meant.  I meant that she should help you and talk with you if you were uncertain about things.

Me:  What she heard was that she was the one to make medical decisions for you.  I’m not even a part of it.  And that you wanted her to keep it a secret from me.

Him:  That’s not what I meant, clearly.

Me:  Well, not so clearly, evidently.  I’m your wife.  You and I are a team.  We’ve always been a team. I don’t care if I’m tired of the whole fucking thing.  I love you.  And I know you want to protect me, to shelter me from this.  But there is no hiding, no sheltering.  You need to clarify this with her.  Because what I’m feeling is I’m shut out of a major part of your life, and I know you don’t mean that to happen.

Him: Of course I’m not shutting you out.  I just want someone to support you in any decisions to be made, if I’m not able to make them myself.

Me:  Then you need to straighten this shit out, pronto.  Because it isn’t good and it’s not going to be good unless you do.  For my sake and her sake, never mind yours.  I love that you have always protected me, that you love me so much that you don’t want me to feel alone in this.  But seriously, you need to straighten this shit out.

Him: I’ll talk to her.

Me:  And what the hell did you mean when you told her to keep it a secret?

Him:  I didn’t want to make an issue of it.  I wanted her to quietly support you, offer you suggestions if there was something you didn’t understand.  You always tell me how it’s good to have two sets of ears when medical information is involved.  She could be a sounding board for you.

Me:  I get that.  That’s fine.  But that’s not what she heard.  So get that shit clearly stated to her.

Him:  I will.  Right away.

Me:  We’re good then.

Him:  All I know is that I love you more than life itself, more than any other person I’ve ever loved.  I want you with me.  I don’t want to leave you and I know I have to and I’m worried about you.

Me:  I know.  I know.  I know.  This is killing me, losing you. But do something, and do it fast because this is serious shit.

Him:  Come sit with me.  Be with me, next to me.  I love you.  You’ll never know how much I’ve loved you, and love you now.

Me:  I’ve always felt loved by you.  Which is why to get this shit settled now.  We don’t need this coming between us.

* This conversation was never had, except in my mind, in the days prior to his death and afterwards.  I went back and forth with my sister, once I was made aware of this, with friends-how do I handle this?  What did he say, how did he say it and what did she hear?  I didn’t want to further upset him, so I never spoke to him about it. He was on heavy medications, he wasn’t thinking clearly (though he appeared to be at times).  He was dying, for Christ’ sake.  So I never said anything to him out of concern that if he clarified things with his daughter there might very well be unpleasantness, which would lead to more discussion between he and I, and for fuck’s sake, he was dying!  So I sucked it up.  Not in an oh, I’ll just let it lie and be okay with it way but in a my husband is dying and I’ll be double-damned if I spend the last days of his life having these conversations way.

Which has, unfortunately, make a lot more of all of this suck big time, after his death.  I think it’s called complicated grief….