When I'm strong and feeling fine maybe
When I can look at you without crying
You might look like a friend of mine
But I don't know if I can
Open up enough to let you in
Here come those tears
Here come those tears again
--Jackson Browne
I don't even have to close my eyes whenever I want to see her.
I take a deep breath, and I have to if I want to write this, and now I'm back ten years walking into the airport after a long deployment in the most troubled place in the world; seven months that felt like seven years, and she is waiting for me, my fiancee, my love, my soon to be wife. She was wearing a black leather bustier, tight black pants and high heels. And she has a surprise waiting for me: a white stretch limo that will take us home, with champagne included. You just know what we started there, way too impatient to wait for our bed, what I thought and wrote and messaged her about almost every night I was in the desert.
And it's not difficult at all to remember her when we first started seeing each other and one day she picked me up from a street corner, driving up in a Jeep, and some guy standing next to me and grinning because she looked so fine behind the wheel and thinking maybe some guys have all the luck. She was smiling too, always did when she saw me then.
And later that year when we go to the south of France, our engagement-moon, where I had proposed to her somewhere over the North Atlantic, and the steward served us champagne and they made an announcement over the air; we ate lunch in the open air restaurants that lined the beach. She sits at the table wearing summer wear, and I got a real picture of her that time, her sweet smile, her radiance, how she was then.
That's the picture I used for her obituary
Welcome, fellow travelers on the grief journey
and a special welcome to anyone new to The Grieving Room.
We meet every Monday evening.
Whether your loss is recent, or many years ago;
whether you've lost a person, or a pet;
or even if the person you're "mourning" is still alive,
("pre-grief" can be a very lonely and confusing time),
you can come to this diary and say whatever you need to say.
We can't solve each other's problems,
but we can be a sounding board and a place of connection.
Unlike a private journal
here, you know: your words are read by people who
have been through their own hell.
There's no need to pretty it up or tone it down..
It just is.
This is going to be a hard diary to write, but I'm not going to have any respite from the 'write the goddamned diary' voice in my head which has only grown more insistent as the time has passed since my wife's death from recurrent cancer last year. So I guess I'm going to have to. Our anniversary is coming up, ten years since we married in New York, but that's not the impetus. Every day in a sense is an anniversary.
Fourteen years ago we met & became intimate; ten years ago we married; eight years ago our daughter was born; seven years ago she was diagnosed; five years ago it recurred. Pick one or contemplate them all. I used to be a semi-frequent diarist but I haven't written much since her death. I think that is because I'm blocked, but that maybe I am blocked because I feel I need to say this.
It's not depression I feel, although that could be a part. It is pain, and there's a difference. I'm not depressed, just traumatized. This isn't just grief, it is complex grief. I can function; I have a daughter to raise and provide for. Maybe I can finally open up and trust someone else's affection, a little bit. Perhaps I can work on my conflict; I want to give, and receive affection; I would like to make love to someone and have it mean something, and yet there is also the urge to push away,to not let someone in, to verbalize the thought that comes so often to the grieving, maybe the most common thought they have: "leave me alone".
I did a little bit with the grief support groups. It taught me that grieving comes in many different forms, and confirmed to me that, yes, how ones loved one died and the circumstances surrounding it make a profound difference in how someone does grieve their loss. What I sometimes would like best is understanding, from those around me, But I almost never feel I get it. People make assumptions, but you can't assume you know what another is contending with in his heart or what the conflicts are. In fairness, the only thing that comes close is reading other diaries in this little grief veterans group of ours and maybe that is a reason for writing this, and sharing my pain. We need not bullshit here. I venture to guess I am not unique. Sure, other surviving spouses have gone through something similar to what I went through. Yeah, it really is something to watch your beloved die slowly and painfully of a fatal disease, a disease which can be breathtaking in its cruelty. To feel alone, isolated, relentlessly put upon. Dealing with ugly realities, it really isn't like the movies, so no, you got no idea, just because you saw 50/50 or Love Story. I don't recall any scene in which they actually cleaned up shit in those pictures. Maybe Amour comes close, hence the title. But everyone has a different version.
Triggers abound. The untimely and sad death of Robin Williams was a trigger. We had seen him in my college in his 2009 tour, after he had had his aortic valve replaced and was as funny as ever, maybe even more manic. This was between bouts of her radiation treatments. He was funny enough to get her to laugh. The other night I was watching "The Incredibles" with my daughter and the scene comes on where Samuel Jackson's character Fro-Zone shouts to his wife "Honey Where is my Super Suit…WHERE IS MY SUPER SUIT!?" that was our in-joke, said when I couldn't find something that I needed to go to work in, my uniform maybe, and she would smile and help me find my super suit. I think my daughter was puzzled when I repeated the line at the TV. I think that is a common theme among the grieving.
But never mind, it's much more fun to write about meeting and loving her before the illness set in and the darkness came
* * * * *
We both came from bad marriages. She had married young, watched it slowly sour for whatever reason, now long past the early marriage fantasy. I'd had several relationships culminating in a loveless marriage that was its own brand of romantic purgatory. So sure we had our baggage; many do. It didn't matter.
What matters is what we felt, the urge, the electricity between us. It is hard not to slip into cliche, but chance threw us together and chemistry and lust and shared values kept us that way. Were we similar people? no, but it doesn't matter when the one you love is exactly what you need.
She followed me as I changed jobs, First to Tennessee, then to Hawaii, then to Michigan. I went into the military and got deployed; she waited for me and we did the marriage after I got back. One of the most heartbreaking pictures I own is her embracing me as I departed and trying not to cry; there really are quite a few tears when a unit says goodbye and goes off to war. She held up well, always supportive, kept it together. You know, she discovered that tequila looks like original listerine, so you can surreptitiously send it to (hypothetically) a deployed army officer in a listerine bottle and no one will be the wiser. And that Triple XXX DVDs conceal well in a triscuit box with a little glue. And that twinkles, coffee and cigars can make your day when nothing else does.
Phone sex was impractical at that time and place, but I did get some private space to do steamy instant messaging. Done right, it can be quite a turn on. And when I got back we combined our bachelor/bachelorette parties; we went to Scores in NYC and bought each other lap dances. We liked indulging each other, and did.
When our daughter arrived, we felt like the happiest parents in the state. It had been a difficult pregnancy for her; hemorrhage, bed rest, hyperemesis (which means you get nauseated and vomit and don't really feel better until the pregnancy is over). But all that was over when we had Alexandra in our arms. She was loud, small but healthy and cute as the Ivory Snow baby. I felt happy in my new job. My wife finished her degree and was an honors graduate four months after the birth. So seven years into our time together we took a fun trip to Jamaica when A. was a year old, and it was just as wonderful and fun as the first trip we took together.
Then, when we got home, she said she had some pain, and some bleeding, and I should get her a doctors appointment.
* * * * *
For those who have never had the experience of having one's spouse, one's beloved, one's world diagnosed with cancer, I can tell you what it is like in a sentence. It's like having a nightmare in which someone tells you that your loved one has cancer. Except you don't get to wake up from it. There's no turning over and seeing the sun shine from the window and feeling the relief as all the fear and sadness melts away to nothing. You don't get to say, gee, honey I had this horrible dream, but never mind, lets get some coffee, and hey don't we have a dinner party to go to tonight? The waking nightmare feeling abates but at least for me never goes completely away.
And the reality that Christopher Hitchens illustrates in 'Mortality', his account of dealing with the cancer that ultimately took his life is this: when you are diagnosed, you gently but firmly get escorted to your own corner of Cancerworld (He called it 'tumorville', but never mind) where life is pretty much turned on its head. And here's the salient point: it is exclusively reserved for those with the diagnosis. The spouse can visit, but he can't live there. Too much of what we do depends on being healthy, and there just isn't that much overlap between cancer world and healthy world.
So they took her to cancer world. Cancerworld was local for us at first; convenient, so I could pick her up and drop her off for treatment, even be with her during some of it. Tried to put a brave face on things; chemotherapy these days isn't the torture chamber that it used to be; not that it is any fun. We got a year, more or less after the treatment when it looked like we had extirpated the cancer. She wasn't completely the same after it; who would be? Yet the demands of life were there, we had a toddler, and well, I thought to myself there is always more time to heal.
I come to the question of how does one really relate nightmares? The burden of being the survivor, the living with anguish everyday, the stunned feeling of why the hell is this happening; do broad strokes help, or details? Well try this out: A year and a half after her diagnosis, and a little over a year after her treatment finished, She recurred. That is very bad prognostically, because it means the sort of cancer you have is the kind that spreads, the kind that kills. Seldom cured. Real bad news.
And who do you think told her this real bad news?
I did
Where do I take this pain of mine
I run but it stays right by my side
So tear me open, pour me out
There's things inside that scream and shout
And the pain still hates me
So hold me, until it sleeps
* * * * *
They gave her four years at the world leading cancer treatment center.
Rising up out of the Houston streets, it looks like an icy version of the Las Vegas strip; a mecca of interjoined buildings and world-class hospitals dedicated to the treatment of cancer and other fascinating pathology. People come the world over to get treated there; the TVs have foreign language channels. If you come there as a patient you certainly get treated. They don't really give a shit if they're not precisely on time for the appointment; when they get to you, they get to you, and they treat you. Whatever it takes.
So the next few years are interspersed with planerides; with travel and living arrangements, with wheeling her through airports and on planes and off planes in varying stages of treatment, varying strength, trying her best to get through another trip and maybe just to stay continent until we could make it to the hotel room that connected to the treatment center. Sometimes we could almost make a sightseeing trip out of it. We didn't want to bring our daughter unless we were there for an extended time; we didn't feel it was exactly the place for children. But she was there over one holiday period; I went out a got a pre-prepared thanksgiving dinner from the local supermarket because she was way to weak to cook, although that had been one of her favorite things to do before she got sick. And yes, we would sometimes self-medicate our pain with alcohol, when she was up to it. Not that it really works long term, and it is not like we were big drinkers anyway. But it did help.
In a sense we were fortunate because I had good health insurance through my work. I remember thinking frequently how do people with no, or substandard insurance do this? Come to dwell on it, how do people afford the travel costs if they are not blessed with a good income? the alternative to not do all one can is unthinkable. What would have happened to her had she not been married to me and was one of the millions of uninsured working women? This was pre-obama care, so for a laugh, we can also think what happens to one when the insurance says you have used up your benefits, in the middle of experimental chemotherapy maybe, and you are now on your own.
In the classic Kubler-Ross model five stages of grief are posited for someone facing their own death. This has been a widely used and useful framework for discussions on loss and grieving for the last 45 years.
Certainly it helps, but only so much. The stages do exist, and I lived them for four years. With only two notable exceptions; the first is that denial was possible, even encouraged for her, but not for me. Part of it is that I have medical knowledge and some experience; I know what things mean. I faked optimism, I never discouraged optimism or even outright denial on her part, although I don't think she felt much of that either. But the idea of alternate reality where the diagnosis didn't exist, or would be cured by the next round of chemotherapy or that there was some sort of suppressed Cancer cure in a Guatemalan jungle clinic, that never resonated at all with me.
And with this process, this relentless decline, there is anger, often. It is quite accurate to say that the dying are angry, and who can blame them? I know that there was a lot of anger, and a lot of lashing out; some of it justified, some of it not. Just like there were people who knew us who were supportive, and some who weren't. Just like there were some whom I thought barely knew me, but were there at her funeral; it touches me to this day. And some who weren't. But to get back to what I was saying, there is depression too, and again, blame seems out of place. Hard to fix depression when you can't fix what is causing it. Our last trip we took, somewhere I thought would make her happy, she barely got out of bed. We came back early; it will be some time before I can bring myself to go back there again.
The other thing is this 'acceptance'. Often people do get there, and it is the survivors who can't. Some cut through all the bullshit and go right to the acceptance. But I don't think some ever do, and I deep down don't think my wife ever did. To her, that would mean accepting the unfairness of it all, accepting that she would never see her husband again; accepting she would never see her daughter grow up.
There are those who can square cancer with their theodicy, but I never could, and I don't even want to. And if you cannot understand that, you cannot understand.
In the end, it was peaceful, her death at hospice. She hated going there; she wanted to die at home, but it just wasn't possible. Her condition was too advanced and her care needs too great. I brought in as many things from home as possible. They medicated her into insensibility and for the final time in her treatment she didn't suffer. She took a long time to die; I think she fought to the end. She did revive just long enough to say "I love you" which were her final words to me. I hope she even meant them.
So how do I deal with this, this conflict I have, of many, wanting to remember but also wanting to forget. I don't want to remember her pain. I don't want to remember watching everything I loved about her die, and then afterward her death, and I wasn't even in the room with her when she did die because I had to deal with an issue involving our daughter, an issue needlessly and gratuitously caused by someone else who was supposed to be supportive. I can change states, I can change jobs, I can change friends, all of which I did, but I cannot change what I cannot forget. It's like the old Indian saying about the two wolves in everyone's nature, and the one that wins is the one that is fed. So I guess in the final analysis, I'll feed the remembering wolf.
I would like to remember the love, I would like to remember the sex, I would like to remember her before she got sick, I want to remember her back in the time we could do anything we wanted to. And since her funeral was attended by many who did not know her before she became ill, I dwelt on that. I continually emphasized how she was before her illness, because otherwise they wouldn't know. I had our old photographs up, our wedding and vacation pictures, her childhood snapshots, her enjoying the things in life she loved; her dogs, her cooking, her work.
Let me close with this piece. I played it at her funeral. Listen closely if you really want to know what she was like when I fell in love with her, because the music and the words are very her; what I really mourned, and mourn to this day.
I dreamt that suitors sought my hand,
That knights upon bended knee
And with vows no maidens heart could withstand,
They pledged their faith to me.
And I dreamt that one of that noble host
Came forth my hand to claim.
But I also dreamt which charmed me most
That you loved me still the same
That you loved me
You loved me
still the same,
That you loved me
You loved me
still the same
8:43 PM PT: Thank you for all your kind comments on my expression of grief. The catharsis doesn't come, like I thought it might, by writing; it comes from the reading of the comments, from the understanding that is shown, and the empathy exhibited.