Baby steps . . .

I took a step toward something today that was more difficult than I thought it would be, and I'm still completely terrified about it.

A few weeks ago I had an appointment at the VA Hospital here to get set up with a new Primary Care Manager. In discussing my medical history, Keeghan's death came up. The doctor asked me if I needed a referral to a counselor to talk about it. As I was saying my normal, "No, I'm fine" my husband was sitting behind the doctor nodding "yes" at me. I'm not sure why, but that reaction from him immediately had me in tears. So of course, the doctor immediately put in a referral to psychiatry for me.

I received a call a few days later from a Social Work Supervisor who was very kind, starting the conversation by extending his condolences. He then talked to me for a few minutes about possibly referring me to a support group for grief management, stating he thought that might be more helpful than individual counseling.

For the past few years, I have "used" my friends in the cancer community as my support group, but I now know that really wasn't helping. Instead, it was having the exact opposite effect, making me feel even more isolated because so many of them are not where I am. They still kiss their children goodnight. Their children have unique post-treatment issues of their own, something I will never understand, but damn it . . . they can still hug their child, tell him they love him, fight for him. They have no understanding of how helpless I feel not being able to do any of those things.

So maybe this group therapy thing will be good. I've not had good luck with individual therapists because I've never had one who actually gets it. They have education and fancy titles, but they haven't experienced it. They just don't know.  But I'm so scared. Getting into a room with others who do get it, opening up and sharing ... I don't know if I can do it. It's easy like this, behind my computer screen, no one to see how often I have to walk away and sob to get through typing a few paragraphs. In a room of strangers ... I just don't know.

But I'm going to give it a try. I called the social worker today and discussed finding groups that are cancer specific, preferably childhood cancer specific. I'm going to call a couple myself and he is going to put out feelers to see what he can find.

Baby steps. That's what it has been since Keeghan left. A little bit at a time.

Wish me luck.

Broken thinking.

life begins . . .

grow, play, listen, learn

life’s early challenges

plan, prepare, study, apply

youth’s dedication

choose, try, work, earn

high expectations

fall, plan, love, hope

a shared journey

conceive, deliver, routine, normal

life in motion

tragedy, fear, nightmare, death

wait, what?

wish, pray, beg, cower

how can this be?

struggle, hurt, question, continue

what choice is there?

different, misfit, pariah, lonely

not my fault

want, need, chance, opportunity

is it too late to start anew?

doubt, frustration, anxiety, impatience

just let me prove myself!

life so far . . .

Backlash ensues.

It seems my last blog post has caused quite the stir. Interesting, considering I never stated the names of any of the people I was writing about. Since one of them is no longer living, I can only assume the other chose to tell everyone I was writing about her.

Attention.

Keeping it real folks, I did not set out to "smear" that person. Anyone who knows me knows that writing is therapeutic for me. Something that was causing pain needed to get out of my head. I waited over two months hoping the other person would reach out. I was the one who was judged, remember? Was I supposed to be the one to beg forgiveness for my honesty? Should I have begged her to try to see my perspective? Do I always have to see things the way she does?

I became a part of this 46 Mommas group way back in 2009. I thought then that getting 46 women in one room was a crazy idea. Five years later, I still do. I've met some amazing people and I've met some nut jobs. Most of the women I've met fall somewhere in the middle. One of the challenges of joining a group like this after your child has died is that no one knows you as an actual "cancer mom." You're an "angel momma" - a phrase that bites me in the ass every time I hear it. I have been a part of conversations with other "cancer moms" where it was like everyone at the table forgot that I once actively lived the life of doctor appointments, labs, and scan anxiety that they still live. It's only when they realize I haven't said anything in a while that someone feels pity and throws me a bone - "did you ever have to deal with this with Keeghan?"

It's lonely. It hurts. It isn't fair.

But because I was friends with these people, I smiled and nodded a lot, and then cried in the car on the way home. When something happens, i.e., the death of the man I spoke of before, that I have far more knowledge and understanding of than these other people do and I express an honest opinion, I'm wrong.

So be it. Hate me. Call me names. Make yourself into a martyr. Let anger turn you into someone like the man who died.

My life will continue on. I will forever cherish the sisterhood I once felt with that person, albeit tarnished by the way it ended. Those who appreciate my honesty, understand my perspective because they have been there, or accept my perspective because they honestly can't come close to understanding it, will still be my friends.

To all of the saints out there looking down on me - I wish you well.

Be careful who you judge.

I had someone unfriend me on FB a couple years ago because I called her out for (imho) being shallow. Her husband couldn't go to a function with her (for the record, it was Wine Fest) and whined about it on FB, saying "FML." I called her out on it because I didn't think something so small called for that (stupid) phrase. She unfriended me for it, and I was just fine with letting the friendship go.


Recently I chose to end a friendship with another friend, a cancer mom who (I thought) was a good friend of mine, because she judged me on something I said on FB. I had just heard about the death of a man whose son, like my own, died of a brain tumor a few years ago. I won't lie, I thought this man was horrible. He did not allow his son to die with dignity, instead posting pictures of the child vomiting, naked and being held up on a toilet, and in the end, of the boy's ashes in a plastic bag with a face drawn on it. The man was despicable. So when I heard of his death, I posted "karma baby" on my FB wall.  I did not use his name. I didn't need to because the number of people who shared my feelings about him knew exactly what I was talking about.

Let me get something straight right up front: I am not happy the man died. That isn't what I said. But I do feel karma came back to bite him because he was so negative.

My friend never said anything about my post. A couple of weeks later though, I sent her a text message asking if she knew how he died. What I really wanted to know was if his anger over his son's death led to his own end. I have fought to control my anger ever since Keeghan died. Most of the time anymore I succeed, but that wasn't the case in the first few years. Anger ate away at me like an invisible flesh eating disease and the only cure was for me to recognize it and harness it. My friend didn't ask why I wanted to know though. Instead, when I asked if she would tell me if she knew, she replied that she would not, followed by, "Do you want to gloat?"

gloat

glōt/

verb

1. 1.

   contemplate or dwell on one's own success or another's misfortune with smugness or malignant pleasure.

Yes, that is exactly what I wanted to do. I wanted to dwell on how much more successful I have been at what? Grieving? Staying alive after my son died? I am totally the kind of person who wants to jump up and down with malignant pleasure over the fact that this man died. At least that is what my FRIEND thought of me.

My thoughts about all of this brewed in the back of my mind for a couple of months. To say that I was angry would be a lie. Angry is far too mild a word. But it took some time for me to really analyze what it was I was feeling. This person had walked the Cancer Path with her child for a while, and the path she walked had absolutely been horrible, but her path was short and she arrived at the other side with her son still beside her. In that respect, the path she traveled with her son and the one I traveled with my son shared very few commonalities.

The man I speak of who died had walked a much more similar path. We both dealt with very young sons being diagnosed with brain cancer. Both of our sons relapsed. We both watched as cancer took away our children's ability to do basic things like walk, talk, eat, sit on a toilet without assistance. We watched our boys DIE. Our paths were very much the same. It is the way we dealt with our journeys that differed. 

When my son reached the point where his brain tumor made one eye start to turn to the side, I still took pictures of him because every moment was one to be cherished, but I never posted them out for all and sundry to see. When he needed his dad to help him sit on a toilet, it never occurred to me to run and grab a camera to take a picture of it, let alone post it online. And my son's ashes are treated with respect, always. ALWAYS.

Additionally, I have never badgered anyone to donate money to cancer research. I've never tried to make someone feel guilty for not donating, had my friends attack them on Facebook, or belittled those who didn't jump on my bandwagon. He did. Loudly, publicly, and with complete malice, all born of his anger. Anger I could understand.

This person I had called "friend" judged me - harshly - on something she had no understanding of. None. Her path didn't come close to what mine and this father's had been. Do I have the right to judge him? Most would say no, but I say yes. Tell me I'm wrong, but unless you've also walked our path, I'll tell you to shut the *#@% up because you don't know anything. Just like she didn't. 

Maybe this is a case of tit for tat - I was unfriended for judging someone, and then I unfriended someone for judging me. 

C'est la vie. 

Does anyone wonder about the lives of old people?

I read this poem as I was catching up on what some of my friends are doing on Facebook (where, you know, I no longer post but I still read what other people say occasionally) and this caught my eye.  Our country has such a different outlook on our elder people - they're a nuisance, they're expensive to provide care for...but do we ever stop to wonder what kind of life they've led?

While living in Okinawa, I met a few ladies who were quite old. Most of them got around better than some 40-year-olds I know, yet were in their 70s! One particular lady, Chieko, was able to tell us stories of having been a small girl when the Americans invaded Okinawa during World War II. She told of hiding in a cave with all of the other women and children from her village and how, once the fighting stopped, her grandmother went out to meet the Americans. You see, the Japanese military had told the villagers not to ever let themselves be caught because the enemy would rape the women and then kill them all. Chieko's grandmother volunteered to go out and meet this enemy who was guaranteed to rape and kill her because, as she told her granddaughter, "I am an old woman", meaning her life had been led and she was ok with possibly sacrificing herself to protect the rest of those in the cave.

Of course, that isn't what happened. The grandmother came back a few days later with friendly Americans, and brought everyone out of the cave. Chieko eventually grew up and married a man who she met while he was stationed in Okinawa while serving in the US Navy. When I met her, she was close to celebrating her 60th wedding anniversary with him.

All of this I learned because I asked a question - what was it like growing up in Okinawa?

Behind every old, weathered, beautiful face there is a story of love, happiness, sadness, tragedy, and triumph. It's such a shame we don't ask to hear those stories more often.


The following is the story I saw on Facebook today:

Cranky Old Man

What do you see nurses? . . .. . .What do you see?
What are you thinking .. . when you're looking at me?
A cranky old man, . . . . . .not very wise,
Uncertain of habit .. . . . . . . .. with faraway eyes?
Who dribbles his food .. . ... . . and makes no reply.
When you say in a loud voice . .'I do wish you'd try!'
Who seems not to notice . . .the things that you do.
And forever is losing . . . . . .. . . A sock or shoe?
Who, resisting or not . . . ... lets you do as you will,
With bathing and feeding . . . .The long day to fill?
Is that what you're thinking?. .Is that what you see?
Then open your eyes, nurse .you're not looking at me.
I'll tell you who I am . . . . .. As I sit here so still,
As I do at your bidding, .. . . . as I eat at your will.
I'm a small child of Ten . .with a father and mother,
Brothers and sisters .. . . .. . who love one another
A young boy of Sixteen . . . .. with wings on his feet
Dreaming that soon now . . .. . . a lover he'll meet.
A groom soon at Twenty . . . ..my heart gives a leap.
Remembering, the vows .. .. .that I promised to keep.
At Twenty-Five, now . . . . .I have young of my own.
Who need me to guide . . . And a secure happy home.
A man of Thirty . .. . . . . My young now grown fast,
Bound to each other . . .. With ties that should last.
At Forty, my young sons .. .have grown and are gone,
But my woman is beside me . . to see I don't mourn.
At Fifty, once more, .. ...Babies play 'round my knee,
Again, we know children . . . . My loved one and me.
Dark days are upon me . . . . My wife is now dead.
I look at the future ... . . . . I shudder with dread.
For my young are all rearing .. . . young of their own.
And I think of the years . . . And the love that I've known.
I'm now an old man . . . . . . .. and nature is cruel.
It's jest to make old age . . . . . . . look like a fool.
The body, it crumbles .. .. . grace and vigor, depart.
There is now a stone . . . where I once had a heart.
But inside this old carcass . A young man still dwells,
And now and again . . . . . my battered heart swells
I remember the joys . . . . .. . I remember the pain.
And I'm loving and living . . . . . . . life over again.
I think of the years, all too few . . .. gone too fast.
And accept the stark fact . . . that nothing can last.
So open your eyes, people .. . . . .. . . open and see.
Not a cranky old man .
Look closer . . . . see .. .. . .. .... . ME!!

No Redeeming Qualities

It has been one year since we left Japan.  Technically tomorrow is the anniversary of our arrival here, but by this time last year we had already boarded a plane out of the country we had called home for nearly two years. I wish I could say that our first year at Edwards AFB has been as great as Okinawa was, but I just can't.  As my husband says (repeatedly) every time he drives the long drive out to the base that we are forced to live on, "this place has absolutely no redeeming qualities."

No redeeming qualities.

I will say that we have met some incredible people here, but considering the fact that the majority of them hate it here as well, I don't count that as a redeeming quality. Those poor souls are just our prison mates in Hell.

And yes, I do consider this place Hell.  Consider these facts:

• because of my husband's position, we are forced to live on base.
• there is very little to choose from - especially of a healthy nature - for dining out on base.
• the gym is closed on weekends, as are many of the fast food restaurants.
• unlike any other base we have ever been to, there is no theater on the base.
• the commissary and base exchange here are, at best, mediocre - small, with a pathetic choice of products.  More often than not, you have to travel to some other town to get what you need.
• the base is 35 miles from Palmdale, 25 miles from Lancaster, and 15 miles from Rosamond.

Keep this in mind - if Palmdale is the arsehole of California (which many, MANY people who don't live here by choice would agree), then Lancaster is a bruise on the arse of California, and Rosamond is a pimple on the bruise on the arse.  All three places just suck.  But back to the list.

• the overall "culture" of the Antelope Valley, which encompasses the three aforementioned cities, can only be described as life in slow motion. I've never lived anywhere so laid back in terms of arriving on time, providing timely service, or even just verbally responding in a reasonable amount of time!  No lie, I have asked questions of people before and had them stare at me, mouth agape, for a full ten seconds before even blinking, let alone providing a verbal response!  I just don't understand.
• in order to get to anywhere of any real interest, you have to drive at least an hour. I ordered a new car for myself while still in Japan. When I took possession of it on June 10th, 2013 it had 7 miles on the odometer. It is June 2nd and it now has 19,000 miles on it. I have never driven so many miles in one year in my life.
• and finally there is the weather.  Dry, dry, dry and more DRY, with wind almost daily.  Not just a light breeze; I'm talking 25 mph wind with gusts up to 35 mph.  So even when the weather is seemingly nice, you walk outside and are covered in a layer of dust in minutes.  Don't even think about opening windows in your house unless you want to spend an entire day dusting.

So yeah...no redeeming qualities. I know people who have been stuck here for years, and all I can think is that they must have angered the gods in a BIG way in a past life to be punished so. We have a few weeks left before we will finally be paroled from our sentence at Edwards AFB, and it can't come soon enough.

Day 10 Without Facebook

Ten days without Facebook. Am I surviving? Absolutely. Possibly even thriving.

I do have a confession to make however. I never realized how many times throughout the day I "write" Facebook status updates in my head. Something funny happens and, in my head, I am immediately thinking of how I will word my witty post for the masses to read so that they, too, can enjoy the hilarity of my day. I was appalled at myself until I told Mike about it and he says he does the same thing. We both agreed that we feel a little disgusted with ourselves for having let a social network become so embedded in our thought processes.

I'm not sure what I have filled the time in with since giving up Facebook. I think my laundry might be more caught up than it normally was before. I've applied for a few more jobs online. I've read the news. I've had conversations with my husband about things other than what was going on with some person I "kind of" know on Facebook. I've written more actual paragraphs, some even with a pen and paper.

So overall I think life has been good. My husband has always said that "it takes 21 days to give up a habit" though, so we'll see if I am still happily Facebook-free in 11 days or if I am curled up in a corner, shaking, typing on an invisible keyboard in front of me because I just need to tell the world (you know, that big world of 194 friends I have) that the service I received at lunch was horrible, or that my commute to work took forever, or that I'm getting my nails done today.

I'm pretty sure the world can live without that news.