Almost a year

Well, here we are. It’s a little more than a year since my dad went on hospice, a little less than a year since he died.

My husband and I had planned to try for a second child. After my father’s death my husband asked if we wanted to put those plans on hold.

I said no. My dad was ill for six months and it was six months of daily hell. The last thing I wanted was to put my life on hold. I needed to keep on living. So now I have a son. Pregnancy and childbirth distracted me for a while, but things have calmed down and I find grief is still there.

My dad died. A year on, my mom says his death was peaceful, and the last month of it was–and if that is the part that she’d like to emphasize in her memories, then I won’t burst her bubble. But the time between his diagnosis and death were horrific in ways I still don’t want to talk about a year later. My dad wasn’t one of the lucky ones who stayed lucid and alert and conscious. That was the worst of it all, not the loss of his body but the loss of his speech, mind, and personality. It was like he was hit by fast-moving Alzheimer’s, and before we even knew he had a tumor there was nothing of him left. Yesterday I looked back at some photos (I didn’t want to, but I needed to back up my dad’s computer, and I needed to do that when I was on leave). I saw my dad healthy and vibrant just four months before his diagnosis–and then I saw photos of him only a few months later, a dead man (sort of) walking–and it was beyond unbelievable what this disease did to him, and how fast it all happened.

People repeatedly complain that GBM gets no research funding, GBM gets no press, doctors don’t know much about GBM, etc. Try PCNSL. The funny thing, and something I’m bitter about, is that it’s supposed to be the most treatable brain tumor. Every other PCNSL story online seems to have a happy ending; the patient is either cured or they are walking, talking, or chattering away on forums. I have no idea what happened to us.

Sadly, as time passes, I also begin to get used to his not being here. Not that it doesn’t ache but I don’t think that my e-mail inbox looks empty any more, and I’ve gotten used to his not “liking” everything I post on Facebook, and I know that now I have to take family photos or nobody else will. And I guess if I am lucky and live until my 70s or 80s that I will be even more used to his absence, and I won’t care so much if there isn’t some kind of afterlife where I see him again. I don’t understand though why life has to be so nasty and cruel. He was a good man. He did not deserve to go as he did, or when he did.

Oh God, I miss him.


Online dating: A blast from my past

I was going back over old computer files.  I found this that I wrote six years ago, while living in the boonies.  The “governor” referred to is Mark Sanford–I guess that was going on a the time.  I am now married with two children, in large part because I wised up and moved out of the isolated rural area.

This is to the tune of Simon and Garfunkel’s Sounds of Silence.

Sounds of Online Dating, my new dear friend
Your algorithm ran again
You searched within a hundred miles of here
You turned up dudes who last logged in last year
My “Five Daily Matches” are all active in the NRA
But that’s OK
I’ll just keep sighing and hitting “not interested”

My inbox brought me yesterday
A married guy who wrote to say
He felt that I was his one soulmate
He’d make a great governor candidate
But hon, I’m not gonna hike down <em>that</em> Appalachian Trail
Filed under “FAIL”
I’ll just keep sighing and hitting “not interested”

So today’s fan mail–let’s see…
First dude is nice, but sixty-three
Number Two? His profile smiles at me
But he can’t relocate from Tennessee
And the third fella writes that he hasn’t done much time
Just petty crime
I think it’s time
to pick up polka.

Creeping up on a year

It’s creeping up to a year since my dad died.

I have been really tormented–I think these days have been the worst time since his death.  I miss him so much.  I still have trouble believing he’s gone.  I vividly dreamed two nights ago that I felt a hand on my shoulder, the way he used to put his there.

I torture myself by hoping against hope that I will see him again someday, that we will be able to talk, all kinds of stuff.  And then I go online and read all the arguments that there is no afterlife, no persistence of consciousness after brain death etc. and they all make sense.  I comforted myself for a while with the thought that all the major world religions couldn’t ALL be completely wrong.  But then in my Googling I learned that even mainstream religious like Reform Judaism don’t really say much about an afterlife.

I found some communities for atheists and agnostics dealing with bereavement.  And in those communities, people talked a lot about how we should take comfort in that our loved ones’ bodies return to the dust and become part of other beings, that they remain part of the world insofar as the memories they left and their children, and that nobody is ever truly *lost* in that sense.  I don’t find that thought comforting at all.  The chicken I ate tonight “lives” in me–and not only do I have no awareness of it whatsoever, but what good is its presence in me to the chicken’s family?  My father to me was my ability to interact with him, verbally, physically, etc. and get a response.  That is gone.  There is no comfort in conservation of energy or material, or anything else.

I miss my dad.  Please God, if you exist, please let there be something after this life, and let us be a family again.  Please tell me there was a meaning and a purpose to all the suffering my dad went through, and let us love each other again.

I wish…

I wish I could have another baby–not because I have the energy or stamina to raise another child, but because I want once again to have that happiness that I had when holding my son for the first time.

The happiness of knowing that for once in the last few years, something had gone right, and that maybe things would continue to go right.  That I had undertaken something huge and scary, and I had an unmedicated birth without preparation or support, and it went OK.  That a new life was beginning with so much potential–that my son’s life didn’t have to go the route that my life did, or my parents’ lives did.

That I could do motherhood all over again, and without the stress of my dad dying maybe this time I could do it right.  Even breastfeeding worked this time.  That I had added to my family.  That I had given my first child what I never had–a sibling.  That I had overcome illness.

It was all an incredible feeling–that my family was complete, with a boy and a girl.

I wish I could experience it again.  But I don’t think I will, so I will make sure that the memory of it stays with me.

Happy birthday, Dad.

It’s your second birthday since diagnosis, and your first birthday since death.

It’s the first time I haven’t sent you a “Happy Birthday” e-mail wtih a talking monkey in it.  The monkey site died when you did.  So did the jasmine and curry leaf plants.  You used to water them.

Mom had cataract surgery today–the surgery we didn’t manage to get for you as you got a brain tumor first and we had to cancel your surgery the day before.  I spent all day today changing your grandson’s diapers and nursing.  You always loved kids and felt we should be devoted to them.  I think you’d have been pleased.

It’ll be a year soon.  We are just a month and a half away.  It’s hard to believe.  I still sometimes feel like you aren’t gone; you’ll come back, like you are just around the corner.  I still struggle with the question of whether I will ever see you again.

I’m afraid of old age and illness and cancer and dying, though I guess not everybody’s is as bad as yours–not even everybody with a brain tumor.

I miss you.  I wish you were here with your grandson.  I hope the two of you met in the world beyond this one, after you left and before he arrived.  I dream of you sometimes.  I’m afraid I’ll forget you.

I will always feel cheated, but I guess time will make this all suck less, somehow.