Archive for the ‘loss’ Category

Personal Stories of Lupus

May 10, 2009

Its Mother’s Day here in the USA.  I’m a mother home very sick with a lupus complicated drug reaction.  Since this is Lupus Awareness Month, I hope to blog  something every day about lupus in order to increase awareness. If you want to help me, please share the info and links on your blogs. If you are a woman, or love someone who is, you really  need to know more about the effects of this devastating disease:

Personal Stories of Lupus

Lupus Awareness Month – The Five Stages of Lupus

May 9, 2009

 

Sung by Avril Lavign

You’re not alone
Together we stand
I’ll be by your side
You know I’ll take your hand
When it gets cold
And it feels like the end
There’s no place to go
You know I won’t give in
no I won’t give in

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say (nothin’ you can say)
Nothing you can do (nothin’ you can do)
there’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

So far away
I wish you were here
Before it’s too late
This could all disappear
Before the doors close
And it comes to an end
With you by my side
I will fight and defend (ah ah)
I’ll fight and defend (ah ah) yeah yeah

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
Nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
[Keep Holding On lyrics on http://www.metrolyrics.com%5D

We’ll make it through

Hear me when I say
When I say I believe
Nothing’s gonna change
Nothing’s gonna destiny
Whatever’s meant to be
Will work out perfectly
Yeah, yeah, yeah, yeah….

La da da da, la da da da da
La da da da da da da da da

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Ahh, ahh
Ahh, ahh
Keep holdin’ on
Ahh, ahh
Ahh, ahh
Keep holdin’ on
There’s nothing you could say
Nothing you could say
nothin you could do
nothing you could do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Psychscribe Quote #57

March 27, 2009

©www.clipart.com 2008

 

“If you watch how nature deals with adversity, continually renewing itself, you can’t help but learn”  Bernie Siegel

A Comforting Ancient Story

March 25, 2009

My dear friend SanityFound sent me this ancient story to comfort and fortify me about my upcoming visit to my dying uncle. It did indeed comfort me, and it resonated with truth. I hope it helps some other reader here:

In ancient times it was believed that when someone gets an illness, someone who doesn’t die suddenly, it is God giving those that passed on a chance to be with those who visit the the ones soon to pass.  In ancient times those who loved the one who was ill would visit them, staying a while at their bedside with their eyes closed, just breathing and feeling. They said it comforted them feeling those gone already surrounding their loved one.

 God brings the angels who know the one soon passing so that they do not fear, and to give comfort to those visiting.

The Life Cycle

March 23, 2009

Even as I celebrate my daughter’s pregnancy and my son’s imminent marriage, I got terrible news last night. My  favorite uncle, brother to the father I’ve been grieving on this blog, has pancreatic cancer. The very same cancer that took my father’s life. Lethal and fast moving. And, even though I wasn’t present when my father died, I now know it was a very painful death. A death my uncle witnessed.   I feel sick at heart over what he has in store for him. What he knows he has in store for him. I always imagine, no matter where my illness takes me, that the doctors would give me enough painkillers that there wouldn’t be much pain. Apparently that’s not always the case.

This is the uncle who taught me to ice skate with my  beloved twin cousins, Lenny and Joe, both already dead before their time.. He took us on wild sledding rides, the three of us screeching in terrified glee.  He taught us  to dive into our pool head first, hands properly pointed above our heads. To make a game of raking autumn  leaves and watching him set fire to them…then toasting marshmallows, carefully, his hand on our wrists to be sure we were safe. He taught the twins, already raucous,  to make practical jokes at my expense. He was the one who made noise on the roof for Santa on Christmas Eve, complete with bells for sound effects. Who truly enjoyed the company of us three little rug rats. And most importantly, who took us off the hands of our stressed out parents and provided a safety haven whenever we needed it most. 

I want to run to him and see him, its been years. I will go with my aunt, his sister,when she is over the shock and ready to plan our flight. I confess I am terrified.  It already feels so like what we went through with my father. I want to be strong and supportive but I’m afraid the similarities will curl me into a useless emotional fetal position..I keep telling myself that he’s not my father. He’s my uncle. I keep telling myself that he is 75. My father was 53.  I tell myself that we all have to die of something. As he has said, he’s had a good run.

It doesn’t help.  It doesn’t help at all. My roots are dying one by one, as nature intended. Thank God a new one is sprouting in my daughter’s womb.

Economy Crashing Home – AGAIN

March 15, 2009

Gloria Steinem once said that the personal is political. And I fully experienced what she meant. Now, in my life, the political is becoming personal. 

At least my husband’s job is intact…for now. Maybe it was a rumor that the business would fold, but the scare certainly got our attention regarding our vulnerability in this economy . Now, two other family members are definitely being hit.  These are not rumors. Both of them had their own businesses which in another economy would have made it. Now, they’ve lost everything.  Oh I know, I know, material things are not the most important things. We all  write about our values and all the wonderful abstractions that fill our souls and are what count. We talk about the value of suffering and what we learn from it. 

But it hurts like hell to watch your loved ones go through something like this. First, their grief over their lost businesses. I know. I’ve been there.  You put your all  into it and still you have to close the doors. And then the fear. Their fear and yours. What will they do next? What is there to do next in this economy? They’re qualified for jobs… just like  the millions of other equally qualified people  who are waiting on line for interviews.

I know, health comes first. Believe me I know. But right after that comes a sense of safety and security in the world as we’ve known it.  And that, for now, is gone.

First it was physical terrorism. Now our economy crumbling.  It sure feels like another type of terrorism, doesn’t it?

Economic Crash Hits Home

February 26, 2009

Sooner or later the reality of it all had to hit. Like millions of Americans, we lost most of our retirement money in the stock market crash. We thought it had been safe in our 401K.  Even so we figured, hoped, like millions of Americans, that it would rebound. We did not panic, even though my husband is 64 years old.   We still hope so.

And our home, like mostly everyone else’s, is not worth what we paid for it four years ago. Ok, well fine, we don’t want to sell it anyway. We love our cozy little place out in the middle of nowhere, PA. We look forward to our grandkids’ visits out to the country, where we can take them fishing, have sleepouts on the screened porch, catch lightening bugs, that kind of thing.

However recently just before the crash, my husband, primary wage earner, left a very well paying, secure job, to take one closer to home, and me. And that has turned out to be a disaster. Long story short, the company restructured and let go the man who hired him.  Then the other day Alph comes home and tells me there are strong rumors, from good sources.  that the place is going to fold.  Yes, I know, a rumor is just that,  a rumor. But based upon what my husband sees of the management of the place, which he was hired to fix, the rumor seems highly credible.

With no money to draw on from our 401K  or any home equity, we are one paycheck away from no house, no security, no golden years. Luckily, he has already networked with a previous boss who is also a personal friend, and  has consulting work lined up with him for sometime next year which should turn into a full time job.

But still…  one paycheck away from public assistance.

It wasn’t supposed to be this way.  Not at our age. I grieve for the lost, false sense of economic security. Ignorance was bliss.

If I Had My Life to Live Over

February 7, 2009

 

This is a well known column by Erma Bombeck, a very popular writer who was syndicated back in the days before the internet and died in 1996.. (Yes children, there once was a world without it when people couldn’t live without their paper newspapers!) 

Anyway, I thought I’d post it for anyone in younger generations, or other countries, who missed it. Its quite wonderful, I think. Hope you will too. Its called “If I Had My Life to Live Over”.  She writes:

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained and the sofa faded.

I would have eaten the popcorn in the ‘good’ living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have sat on the lawn with my children and not worried about grass stains.

I would have cried and laughed less while watching television – and more while watching life.

I would have shared more of the responsibility carried by my husband.

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren’t there for the day.

I would never have bought anything just because it was practical, wouldn’t show soil or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I’d have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, “Later. Now go get washed up for dinner.”

There would have been more “I love yous”..  more “I’m sorrys”…  but mostly, given another shot at life, I would seize every minute…look at it and really see it…live it…and never give it back.

by Erma Bombeck 

About Erma from Wikipedia: “Erma Louise Bombeck (February 211927 – April 221996), born Erma Fiste, was an Americanhumorist who achieved great popularity for hernewspaper column that described suburban home life humorously from the mid-1960s until the late ’90s. Bombeck also published 15 books, most of which became best-sellers.

From 1965 to 1996, Erma Bombeck wrote over 4,000 newspaper columns chronicling the ordinary life of a midwestern suburban housewife with broad, and sometimes eloquent, humor. By the 1970s, her witty columns were read, twice weekly, by thirty million readers of 900 newspapers of theU.S. and Canada.”

To My Everlasting Shame

February 6, 2009

I did not stay at my father’s bedside, to be with  him until he passed. There he was, right upstairs in the bedroom, while I hid like a coward downstairs and out of sight. We knew it would be that night. The doctors had called the family in and said so. 

All his brothers and sisters, the aunts and uncles I grew up with,  had been pretty much staying at my parents’ house for those last weeks.  The pasta pots were always boiling. They brought Italian bread and provolone cheese and sweet salami with big green olives. Most importantly,  they brought the black humor which is our family trademark , especially during our darkest hours.  It sustained us and carried us.

And yet, there was an age regression that took place for me. At age 32, they were still the grown ups and I was like a child again. That’s just how the dynamics morphed. When it was soon to be time, my favorite aunt had a talk with me and asked me if I really wanted to watch my father die. She explained to me, 32 going on 8, that dying was not like in the movies. It was quite a frightening thing to see.  She encouraged me to have my quiet time alone with him, now in a coma, and say my good-bye. I did so. Then I walked out of the room and all his siblings and my mother went in and the door was firmly closed.

And so he died with his wife, brothers and sisters all around and me nowhere in sight. They later said it was an awful thing. Blood and God knows what everywhere. Even his brothers were shaken by it. It was not something I should have had to see, they told me. As if they had protected me from something.

But not long after, I realized it was my own father’s awful thing. I should have been there. I allowed myself to be shielded by my beloved and well meaning aunt with childlike trust.  I should have been there. I was not a child. I was not, in truth, protected or shielded. I was written out of the last line of the last page of his life.  No, we wrote me out. 

And I am so ashamed, sorry, and regretful… What if my father knew or sensed I wasn’t there, right through the invisible walls of his coma? My shame is this: that I, his oldest and most responsible child, should have  accompanied him on the final stage of his journey. I should have been there. 

No tidy ending to this post. I should have been there.  

(This post was inspired by a poem by Cordie entitled:  If I had it to do all again)

The Measure of Grief

February 5, 2009

 

 

THE MEASURE OF GRIEF

 

Twenty-five years ago today my father died.  

Even in my dreamless sleep I knew it.

 

I stumble out of bed  

where is my husband?

 

I want to hug him    

hug him so tightly

but he is gone

gone to work  

to work his ass off.

 

Gone.

 

I worry about his heart.

 

I want to hug my father  

(who worked his ass off).

I want to hug him  

hug him so tightly

 

but he is gone  

 

gone to rest    

to rest in peace.

 

I’d rather he were here, God forgive  me.

Yes.  I would rip him right out of paradise  if I could

to have him back here with the whole family

loving    living   YES , even suffering

but right alongside us where   think he belongs.

 

A quarter of a century.

One-fourth of a whole.

A quarter coin is so small really.  

 

A hole the size of a quarter 

is still in my heart  

big enough to kill me.

 

by Psychscribe ©2009

Loss: Feeling the Pain

January 28, 2009

I wrote in my  previous post, Final Words, about needing to feel the pain of loss in order to move on….well today I am feeling a loss I can’t identify…related to the present…. I know I feel it because I feel so sad, and I can feel the sadness in my chest….heavy….solid…I notice I’ve been feeling kind of angry at my body lately, how it has failed me by turning on itself and using our autoimmune system to attack it, and me. I look in the mirror and want to yell at it….WHY DID YOU DO THIS TO ME????? The research talks all about genetic markers, but I know that psychologically we can unconsciously do bad things to our bodies. I ask myself, what am I punishing myself for? Then I think maybe its not punishment, but fear causing all this in me. Fear of things I still haven’t worked through.  I also realize that at this time 25 years ago my father was dying. He died on February 5, 1984. I always get depressed at this time of year. Maybe this is all connected…I don’t know….

When I finish this post I will go to prepare for my bible study Friday night. I know that the Lord will comfort me as I read. So I have hope.

Protected: Final Words

January 24, 2009

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Lupus Rant

January 14, 2009

I know there are people who have it far worse than me. I appreciate that. But this morning I am feeling just so oppressed by the demands of my disease. I just spent an hour of my life, which I do weekly, filling my pill dispensers. In a few minutes, like it or not, I have to drive 45 minutes away to see my urologist, because I am one of the 30% of lupus patients who has a higher incidence of bladder infections than the regular population.  I am on high doses of prednisone again which make me hungry and fat. Meanwhile I’m trying to live a normal life, continue my professional career, and maintain my relationships with friends and family. Not to mention my sex life. I know I am not saying anything different than anyone else does when they feel the need to bitch about their chronic illness, but this morning its my turn. Lucky you I have to stop now, or I’ll be late for my doctor’s appointment!

Words on Women & Strength

January 9, 2009

Writer’s Block? Why?

December 28, 2008

concrete_block1I’ve been laying on my bed with my laptop for the last 20 minutes, which have felt like an hour..I want to write a post today, but my mind keeps going blank..I tried to write yesterday but the same thing happened. Part of it, I guess, is I keep wanting to doze…a lupus flare, of course, after the holiday fun/chaos at our house this year…everything I think of writing about seems too much…too heavy…or I keep editing it before anything ever gets written..so i’m just going to do stream of consciousness and see what happens…

My mother… 78 years old…for once I enjoyed her, felt the bond, it was as it should be all the time, wish it could be so, too much bad history, too much inner conflict for me…the kids, with their whole lives ahead of them, most of mine behind me, one newly married, the other newly engaged, the next generation getting ready to take center stage in our family life…well good, I hope somebody gets a bigger house because ours was too small to hold everyone comfortably this year, i remember when my parents did it all, way back when…and all of us young adults went to their house for the most wonderful Christmas Eve…my dad cooking the linguini with clams, and then the lobster tails, the traditional Italian Christmas Eve dinner…afterwards the extravagant exchange of presents,  each of us opening one at a time, my father reserving the right to open all of his last, then he died of cancer at age 52, diagnosed and told on his last Christmas Eve, a tragedy i cannot write about even 25 years later, but i do, i must, because how can i not wonder how different our lives would all be now, my mother over the years became a recluse, my son would have been in business with him, making lots of money,  rather than struggling to keep his head above water now…oh my, the head is falling forward again, the need to doze so apparent to me now for what it is, a block to painful feelings still locked away, to things i don’t want to think about…

And so I’ll stop writing now, because I don’t want to think about my dad anymore,  because it hurts, and I miss him so…

Is this what all writer’s block is about? A block to exactly what  needs to be thought about, felt, written about? 

We are all writers here. What do you think?

Psychscribe (Christmas) Quote # 48

December 23, 2008

ERMA BOMBECK:

“There’s nothing sadder in this world than to awake Christmas morning and not be a child.”