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Monday, May 18, 2009

For real


Well, for starters, I grew up in the 60s, which gives me, I suspect, a peculiar take on reality. Then again, it is said that if you remember the 60's, you weren't really there.

So, it should probably come as no surprise for the reader to learn that interactions and relationships in cyberspace often confound me. I mean, who are you talking to, really? Especially when one is allowed to speak from a 'persona' or to weigh in on a any given subject and be known, simply, as 'Anonymous'

And, who do others think they are talking to? Really?

I love the term 'real time'- as if time spent in cyberspace is not. Well, it once was you see, but that was then and this is now. So, does that mean that what anyone said then, when they first wrote on someone's wall or left a comment on someone's blog, even if just 10 minutes ago, is no longer 'real'?

Of course not. I mean, get real!

But, then again, some people actually spend large quantities of time pasting (or reading) captions of their projections of what cats might be saying about a particular subject or situation.

It is different, in 'real' conversations. One can say and do something and, a few minutes or hours later, regret what was said and apologize. It's much, much more difficult to write something and then take it back or even apologize. There's something much more permanent about the written word that lends something to the reality that's not there in 'real time'.

I think the ability to say hurtful things about a person in public and then deny the opportunity for that person to explain or others to join the conversation lends itself to an unreality of sorts. And, if you've already got a problem with reality, well . . . it's not exactly a pretty picture.

I've been thinking a great deal about 'reality' over the past few days. Ever since I learned that my brother has been diagnosed with Alzheimer's Disease.

He's fifty-five. That's 55. Years. Young.

I am - we all are - in a word, devastated.

This is a devastating disease. As memories of our childhood antics come cascading back to my present reality from the inner recesses of my brain, I find myself weeping.

Then again, I just went into another room, intent on getting something and, when I got there, completely forgot what it was I was after. And, I wept. Well, I wept after an almost paralyzing fear seized my heart.

Oh God, oh God, I thought. Is this what it feels like? To put on your shoes and forget how to tie the laces? To pick up the morning paper, and forget how to read it? To live only in your memories because your brain will not allow the firing mechanism to remember what you thought of just 10 minutes prior - or have known since you were six years old?

What is 'real time' anyway?

Some of you who read this blog already know about my brother's diagnosis and have very kindly written to me, offline, or called on the phone to express your love and support and promises of prayer.

You simply can not know how much that means to me.

Some of you are strangers. We've never met. We are 'friends', but we are, for all intents and purposes, strangers. At least, that's how we would have described ourselves just a few years ago.

But the definition of 'friends' on blogs and FaceBook has changed the reality of our understanding of what it means to be a friend.

Even so, I am relying on the reality of your promises of prayer. I take them with absolute seriousness. I cling to them, if one can cling to a vaporous substance not emitted in 'real time'.

In my weakest moments, I sometimes gasp for them like a woman drowning in the devastating knowledge that the reality of her relationship with her brother is changing.

Because his reality is changing - will forever be changed.

For real. In real time.

And yet, I must say, this feels completely surreal.

I always suspected, being a child of the 60's, that the meaning of reality would always haunt me and confound me. Now, however, the loss of the ability to be haunted by or search for reality and truth terrifies me.

I'll be writing more and more about this, I suspect. Writing is one way for me to deal with reality. Or, my perception of reality. And, as it has been said, 'perception is reality and reality is truth.'

My thought about that for today is this: I am suddenly aware that spending one's hours of reality gluing captions on cats makes complete sense.

That may be one blog were I spend more time these days - to escape reality in order to accept it.

49 comments:

Grandmère Mimi said...

Prayers continuing, my dear Elizabeth.

Love and blessings.

Sara said...

Prayers Elizabeth

Cecilia said...

Dear Elizabeth,

I am so sad to hear of your brother's diagnosis. 55 is SO young to be faced with this horrible disease (not that there is any 'good' time to be faced with it).

You can depend on the reality of my prayers; following the posts at another blog I found myself praying for you and your brother in my prayer time this morning, and you will remain on my list.

My friend, my sister in Christ. What can I say? All these words are utterly inadequate. But: I do believe the love of God abides, and will abide, in all of this. I will pray for that love to make itself known to your whole family.

Pax, C.

motheramelia said...

Elizabeth, it is awful to see someone you love slowly lose their memories. I just did a funeral for a woman who is younger than I am who died with Alzheimers and who for the last twelve years was lovingly cared for by her husband. She could always recognize his voice with a smile even when she couldn't recognize his person. She died in his arms. Small comfort for you who are just starting to deal with this. Prayers and love.

Song in my Heart said...

You and your brother are in my thoughts and prayers. For real. I thought I had commented on Mimi's post but I guess the comment is sitting in a tab on my computer at home, unsent.

I've found Dorothy Rowe's books helpful in their discussions of meaning and reality. She's not always very patient with those of us who have spiritual beliefs about the world, but I've not found that too problematic.

People lash out when they are frightened or in pain. Yes, writing these things down makes it a lot harder to heal the resulting hurts. Wish I had a solution for that... But this isn't the first time I've seen such drama online and I daresay it won't be the last.

Two Auntees said...

I think the hardest thing to deal with is the illness of someone you love, especially, the diagnosis of Alzheimer's in your brother. You, your brother and family will remain in my prayers.

susankay said...

In comparable situations I have been known to play solitaire on the computer for hours and hours. Captions on cats would be a step up.

Prayers continue.

Prairie Soul said...

You, your brother, and your family will be in my thoughts and prayers. I absolutely believe, Elizabeth, that your faith and your great heart will give you the strength and grace to face this and discover an ever deeper sense of what is "for real."

Muthah+ said...

I have often wondered about those who glueing messages on cats and am now convinced that they are all dog owners. That is what is real!

Life with any disease is still life--still full of what it means to be God's own.

I watched my mother's dementia change her from being afraid of closeness to one who could hold hands, hug and embrace and still be herself. Yes, it changes. The real question is whether we change with them so that they can be for us all they can be in the change.

What wonderful memories he has of you in childhood. Give God glory for that! And rejoice that the journey that you both will go on will take you closer to the One who loves us all.

Elizabeth Kaeton said...

Thanks to all of you for your prayers and kindness and understanding. For real.

And, thanks for the reminder of the other times of 'online' drama, Song. You're right. In my absorption of 'all-Alzheimers-all-the-time' I had forgotten just how mad things can get in other neighborhoods - even betraying the lines of privacy and then claiming to be the victim. Your reminder helps to put this all into better perspective - and, perspective is reality and reality is truth. For real.

alicia said...

"real" virtual (((((((((hugs))))))))

Ellie Finlay said...

Elizabeth, I am so very, very sorry and you are truly in my prayers - as is your brother.

55 is very young. Oh yes.

Of course you are devastated. How could you not be?

I may say something about reality a little later but I'm not up to it right now. (Not that I'm very wise in that regard at all --- just ways of a regular meditator experiencing the questions, that's all.)

I agree with Song when she says, "People lash out when they are frightened or in pain." I so hope the upset is healed soon. We all need each other - really.

Love,
Ellie

klady said...

me, too (((((hugs)))))

It is so difficult to find relationships altered by diseases or conditions, especially those to whom we have been closest. No matter what we know or think we know about how to cope, how others have coped, and even sometimes how we have helped others, it is such a dumbstruck blow when it hits home.

I have a good friend who was just blindsided by something else yesterday (was fired from her job, in an especially slimy, sleazy way). I don't know what to say to people when they are hurting and hit by one of life's many unexpected blows. But you, your brother and family, as well as my friend, are very much in my prayers.

As for reality, online communications and such... well, sometimes we've just got to go on, flaws and miscommunications notwithstanding. I'm just so sorry that you've had this to worry about, too, during this time of personal pain and sorrow.

IT said...

Warmest wishes and hope for strength for you and your brother.

You are right, it is hard to unsay things when they are written. further hopes for healing for all.

((((Elizabeth))))

Suzer said...

I saw this on another blog, and have been lifting you and your brother and your whole family in prayer. I've been having my own small difficulties, so I didn't write, but you are in my thoughts and prayers. I also pray for your brother's doctors, nurses, and caretakers, that they may be wise and kind, and care for him in the very best ways possible.

VTcrone said...

Of course I will hold your brother in prayer.
Go back and re-read your blog posting of 3/19, "Hello in there, Hello." It was a beautiful piece that brought many of us to tears, and you may now find some comfort in your own words.

Namaste-
M

Paul Davison said...

Elizabeth:

My prayers are with you and your brother. I saw this disease, as yet unnamed, steal my grandmother from us 30 years ago.

One of the things the Internet Age has done is to allow the spread of caring, concern and love over a far greater distance than ever before possible, even as it allows the spread of other things. You've seen the latter, now I hope you are feeling the former.

KJ said...

Prayers for your brother, family, and you. Life truly is a "shadowland."

Oh my! My "word verification" is "joint." Could that be a message?

Elizabeth Kaeton said...

Well, IT, it is always worse when what is written in a moment of extreme distress and in a private conversation is made public. Then, it is compounded by betrayal - that is a serious breach of trust which will take a long time to heal.

Elizabeth Kaeton said...

Thank you all for your kind words and prayers. I can't tell you how much I appreciate it.

barbarab said...

Dear Elizabeth,

Prayers arising for you and your brother.

Allie said...

Prayers and hugs

Priscilla said...

Elizabeth, I have little to offer, other than prayers from my own inadequate, hurting heart, for you, for your brother, for your families.

I know very little about what is and what isn't in life, even though I am nearly 50 myself, but this I do know: Jesus said he would always be with us and He is.

I know too that you, your brother, and your whole family are enwrapped in His loving arms this very moment. I feel His love for you both a thousand miles away and even though we've never met.

Comfort is here, and strength, when you need it. Be at peace and know this. All else is dross and tares and of little use to you now.

We love you!

Elizabeth Kaeton said...

Thank you. I feel hugged, loved, and prayed for.

Christopher Johnson said...

Truce.

I'm 53. From 1990 through 1992, I watched my slightly-over-70-year-old mother die of this every single day. So I know what your family is in for and, dear God, I'd take upon myself if I could. Been there, done that.

Practical advice. If he's nearby, help out whenever you can. If he's not, stay in your lane, as the basketball players put it. In other words, when you visit, keep your head whether you want to or not because eventually, what comes out of his mouth is not going to be him talking. It's going to be the disease.

And watch your cholesterol and blood pressure. Seeing somebody die of this is a real good motivation not to.

JOHN said...

Ah the challlenges of life - with sickness, accident, the effects of aging, fear, doubting self and others - and yet, and yet there is the love of God and the joy that cannot be made sensible. Hugs, the soft sound of prayers lilting skyward amid the sweet smells of the incense of spring flowers - all to remind you that people care for you and your brother - and will be with you all on your journey. Be blessed.

Elizabeth Kaeton said...

Christopher Johnson - I am deeply touched by your kindness. There's nothing like sharing this experience to tap into that deep well of compassion that is at the heart of being a Christian. My brother lives about 3.5 hours away. I will be visiting him next week. At this point, my nephew tells me I need to be prepared for two things (1) a 30 pound weight loss and (2) he looks 'bewildered'. I think I already need to heed your voice to 'stay in my lane'.

And, except for allergies, my health is really good. My doctor says he's envious of my cholesterol levels. But, I do plan to watch my health during this. I felt so much better after being in the gym today.

Thanks for being a brother in Christ. I deeply appreciate it.

Karen said...

((((Elizabeth))))

I am so sorry to hear of this. It is a hard diagnosis. You and your family are in my thoughts and prayers.

Karen

Riley said...

Prayers and warm, healing thoughts for you, your brother John and the whole family.

Love and Hugs

Paul said...

Elizabeth, I have offered prayers since I first learned of this devastating news. I grieve over our ability to wound each other when we are in pain and I hold you and John and all of us before God.

Dale Matson said...

Dear Elizabeth,
The last thing my mother ever said to me (her favorite child as my siblings remind me continually), "You're a nice young man but I don't believe I've ever met you." The disease took away the best parts of who she was. I use her study bible and have her photograph on the wall in front of me at about age 30. She was a beautiful woman. I miss her dearly yet. I understand what you are experiencing and hope and pray for the best for you and your brother.
Dcn Dale

Dan Martins said...

Elizabeth, this is indeed devastating and horrible news. The disease, as they say, "runs in my family," so I know its terrors much better than I wish I did. I hold you and your family in my prayers.

Dan Martins

Sally said...

Elizabeth - Your family is in my prayers. God's grace on all of you as you face this journey.

It's a diagnosis anyone dreads hearing, like "cancer." But the reality is day by day and not as overwhelming as the shocking jolt of the first news of it. - though in your case, you won't have the day-by-day, since you live in different cities. You may feel like you're on a skateboard dropping from one step to the next w/ that jarring thump-thump-thump from one visit to the next.

Not all of it is as horrible as we expect when we first hear the official diagnosis. Mom didn't know me as her dtr (she thought she was 18, and I was old enough to have graying hair), and I don't think she knew my name, but when the MD asked who I was, she said, "She's my friend. She brought me here. She takes me where I need to go."

Some resources for you and anyone reading this blog:
There's an on-line support group hosted by the Alz Dis Research Ctr at Wash Un in St Louis. Information/joining is at:
http://alzheimer.wustl.edu/adrc2/alzheimerlist/
instruction tabs on the left edge of pg.
I found it a godsend when my mother was dx'd early in 2002, and remain on it to help support those who were in my shoes then.

Some books that are excellent:
David Shenk's "The Forgetting," and one written by a trio (can't remember any of their names) called "There's Still a Person in There." Many people speak highly of The 36-Hour Day, but that's more an advice/how-to guide for dealing w/ specific issues than something to help you understand what's happening, what happens as the disease progresses, etc.

Kirstin said...

Elizabeth, I am so sorry. And I will be praying for your brother, and for you.

Frair John said...

My Father said that if he hated anything, it's this damned disease. I'm inclined to agree.

I watched my Grandfather slide away from us. I about died when he didn't recognize me the first time. There is very little you can do to prep for the pain of that moment.

You have my prayers and those of my family. I'm gonna light candles from here to Pennsylvania for you all. God bless you all.

Lindy said...

I was fortunate to be able to visit with my grandmother several times a week during the last years of her life. She didn't know my name, or that I was her granddaughter, or even that she had children. It was too complicated. I used to just tell her that i was her friend, and that seemed to make her happy.

The woman I knew as my grandmother was long gone by the time I returned to Texas and began those visits. I am glad, though, to have been able to know her in a different way. There were others who stayed away. For whatever reason they weren't able to adapt to new ways of being in relationship. It's true that they got to keep their "good" memories. But, I wouldn't trade for mine.

Of course, you'll be fine. You'll adjust and be the sister, or friend, your brother needs. Even though we don't know one another, I believe the best for and about both of you.

I am sorry that your trouble has been compounded by things at MPs. You should have been able to count on your friends, especially while you are adjusting to this very scary and difficult new reality.
I do think that everybody is doing the best they can. Sometimes it's not all that much, but it's what they've got. Let there be love and healing for all.

Lindy

Kathryn said...

Elizabeth, prayers ascending from across the Pond. I'd be happy to add your brother's Christian name to our prayer list in the parish too, if you'd value that. It's such a wretched disease - so hard for all of you, and I'm deeply sorry.
Praying you'll receive strength & grace & light and love - all of you

Elizabeth Kaeton said...

Oh, bless you all for your kindness and your words of support and your promise of prayers. That so many of you have come here as political and theological adversaries to offer your compassion is a testimony to the Risen, Living Christ, and the power of Resurrection.

You all make me weep with joy when you don't give me hope for dealing with whatever the future brings.

Thank you. Thank you. Thank you.

FranIAm said...

So many, many, many prayers for you, for John, for all. Healing, peace and consolation - I pray for you.

David |Dah • veed| said...

May I add my prayers for you, your family and especially for your brother.

We have never experienced this in my family. I have no first hand or anecdotal advice.

Know that you are held as part of my prayer life in this and all things you share.

Don said...

Elizabeth, I linked over from SF to say that I am praying for your brother, you and your family. A tragic disease. May you all find peace in the arms of God in the face of pain.

SUSAN RUSSELL said...

Prayers

Ascending

Unceasingly

Much love, Suze

Kathy said...

My thoughts and prayers are with you and your family. My Grandmother had this disease and the one lesson I learned was that I just needed to be there for her whether she remembered me or not, whether she remembered that my Father had died or not, and whether she remembered my Grandfather had died. I also learned never to tell her these people had died if in her current state she thouht they were alive because she would grieve for their death each time she learned that they had died. Just listen to his stories and relive that day again. God will be with you.

Sally said...

Yes, w/ regard to what Kathy writes about not telling her gmother that her gfather or father had died - Mom was concerned one winter that her parents might not be warm enough. I assured her they were very well cared for and she didn't have to worry about them being cold or hungry; I didn't say they were in a beautiful cemetery and had died 30 and 40 yrs ago....

Alice C. Linsley said...

May your brother's illness be a source of great healing to many. May your hearts be comforted, and may he feel God's love. Divine love covers even lost memories.

Lynn said...

Dear Elizabeth,

Your and your family are in my prayers. This particular sadness has missed my family, but none of us are strangers to sad and lingering illness after a certain age; do know my heart is with you.

It's wonderful to see the prayer comments from those who think so differently about the church. If we can still pray together now and again, there is hope for the kingdom. Or rather, there are signs of hope that we we mortals can actually see!

Oh - (((hug)))

JCF said...

Sorry I'm so late here, but I've been away, mostly, for a few days---

I want to second what our Wise Atheist, IT, said . . . but with prayers added at no extra charge!

And, just because I suddenly thought of this:

I've been tryin' to get down to the Heart of the Matter
Because the flesh will get weak
And the ashes will scatter
So I'm thinkin' about forgiveness
Forgiveness...

Don Henley, The Heart of the Matter

Joanna Depue said...

Holding your brother to God in prayer, Elizabeth - and you as well.

Elizabeth Kaeton said...

JCF - Yup, have already done that. Privately. It's what sent him over the edge this time and brought on the latest drama. Which I think was the whole point anyway.