Just sharing

[The Wife]

One of my ways of dealing with what's been dealt, is by writing.  I'd like to take this space and post some of my writings.  Here is a little piece written on May 7/2007...I share this for others who are just receiving all of the boxes that come when home dialysis becomes a part of your space:


“How many boxes are there?” I asked the deliveryman as he brought boxes filled with dialysis fluid into our one-bedroom apartment.

“Fifty-two.”

“Fifty two?! Our walk-in storage closet is already full of boxes, a few are lined up against one wall in the dining room, and we have to find space for another 52? Why do they keep bringing more?” I asked even though I already knew the answer.

As my partner makes the transition from the way dialysis is administered, we have to have the supplies for both in our apartment. Home dialysis isn’t turning out to be as great as we thought it would be. Sure, some of the symptoms are better but not everything. “It’s a constant adjustment,” I said. “I don’t know why I bothered trying to make this place nice. Let me remove some of the photos from the wall.”

“You don’t have to take them all off. I can’t stack all the way up. When they have confidence that the night-cycler is working, I’ll take the unused boxes of twin bags away. I know, it’s quite overwhelming.”

It was overwhelming. So much that I had to go into the bedroom and have a little cry. I wiped my tears and stepped back into the living room.

“I know it’s stupid to react like this but you know what it is?” I speak to the deliveryman and my partner. “It’s another physical reminder of what’s going on. The only thing I have control of anymore is how I keep our home.” I took a breath. “I have to look at my reactions and see what they’re really telling me. See what I need to release. It’s another reminder to let go.”

Sometimes, something comes into our lives and messes up our space. It may be items we’d rather not have, something someone said to us, emotions we’d rather not feel, or an event we’d rather not have staring us in the face. As I continue to downsize and let go of personal items to make room for medical supplies, I realize something else. As I release my need to have control over the state of our apartment, a space opens and compassion toward myself takes place.

[The Wife]

May 19/2007

While observing all of the boxes stacked in our dining room this morning, a thought crossed my mind. What if they were filled with chocolate kisses? Oh my, that would be a lot, so much, that one would have to give them away. At first, I thought how great it would be to walk outside and give one chocolate kiss to everyone that crossed my path. But let’s get honest here. When one kiss melts in your mouth, you have to have a least a couple more.

My thoughts expanded and I imagined handing out a handful of kisses to each person I met. I imagined the sweetness and the smile it would bring to their lips. I imagined the joy. Of course not everyone can have, or even likes chocolate, but since this is my imagination, everyone gets kissed by sweetness.

What is in these kisses that bring a song to our heart? The best way to answer that question is to remember the times I’ve been given a chocolate kiss. When chocolate melts in my mouth, I feel blessed to be alive and to have the opportunity of tasting something sweet.

The boxes in the dining room represent life, are life giving, and life expanding. We are life. As I observe the boxes stacked on top of each other, extending out into the room, I imagine they’re filled with sweetness and I'm passing it on.

We’ve all been given a box called our body. We fill it, empty it, and experience it. We experience the contents of others who come into our lives. We exchange the contents of our box with the contents of others. We taste the many flavours of life.

Let us all remember to taste life fully and completely. Let its sweetness touch our lips and melt into our hearts. Let us taste gratitude and joy, and give thanks for the box we have to open. Let us pass the contents of sweetness on.

Kiss Kiss

[kitkatz]

Wow! I like the way you express yourself.

[Mimi]

Thank you for sharing those wonderful thoughts with all of us.   We can live several weeks without food, days without water,and only minutes without oxygen, but without hope - forget it.

Mimi                                                                                                                                                     

[Wattle]

I wish I could look at MY boxes the way you do.   

[Romona]

I enjoyed reading what you wrote. 

[ODAT]

I am a technical writer with a dream to someday write a book. Trouble is I have too many ideas and need focus. I truly enjoyed what you wrote. You have a nice way of showing your thoughts, observations, and using verbal dialog. Seriously, you could turn your notes into a book. (or maybe even a movie)

[The Wife]

Wow.  Thanks for the replies.

Odat, I am writing a book.  It's basically finished...just need to edit.   

[ODAT]

I had a good friend who used to work here. He has written two books since he left. I have an autographed copy of the first book of which I assisted with the editing process. The book is called 'When Vapors Vanish' by Robert Steven Calvert. You can get a copy online at amazon.com. Very interesting and I believe, biblically correct. The second book I haven't had time to read yet - 'The Son of Medusa.'
Not that I'm asking to edit your book... just saying that's the closest I've been to writing a book. lol

[The Wife]

You know Odat, I was just in the kitchen preparing breakfast when a thought crossed my mind.  Actually a couple of thoughts.  One being, I need help editing.  The second...can you guess?

This book is a true story that is told in an imaginative way.  I write backwards, upside down, yet somehow, end up standing in the direction I'm supposed to.  Or so I think. Sometimes, I just can't read it anymore and you just never know Odat.  I just might be saying, "Please, can you take a read and help me with the editing?"

I won't be on the board again for probably a couple of days but would like to continue this conversation.  Please feel free to pm me.

[The Wife]

I wish I could look at MY boxes the way you do.   

Maybe it's easier for me to turn the boxes into something else because they're not mine.  They're in my space and I have my own emotions to deal with in regards to my partner being on dialysis, but I can escape from it while he or anyone who is 'doing' it, can't.

I appreciate the feedback on what I've written.  It helps propel me forward with a "yes, you need to finish what you started."  After LL started peritoneal dialyisis, I stopped wriiting my book.  Mostly, it was finished and I needed to step back for awhile.  After 'awhile' dragged on for longer than I wished, I couldn't seem to get back to it.  And then I wondered if what I had written was just a waste of time.  Or something to keep me from crawling into a hole myself.

And then there was the crashing computer or lack of money to buy the ink for the printer.  It seemed that everytime I tried to move forward, something stopped me or left me questioning why I even bothered trying to do anything at all.  Whenever I couldn't move forward, I sat.  I observed, wrote a little without even thinking of the book, cocked my head to gain a different perspective of the boxes that overtake our space, and imagined. 

And thanks to those who said something nice about my way of writing, I'm feeling inspired to move forward again.  Feeling the words flow from wherever they come from as they find themselves in a space on this forum.  Or into the new chapter I wrote this morning. 

Perhaps, my imagination is what keeps me sane - especially now that I am a dialyisis wife.  It's strange but admitting that I am a dialysis wife makes me feel like I've stepped into one of those twelve-step programs I've seen in movies. 

I imagine this movie and in this scene, I see a box.  Inside, it's filled with chocolate hugs.  And I'm giving one to all of you.

Thank you for this space. 

And thank you Epoman for creating this site.  May you rest in peace.

[paris]

   Feeling your hug and sending one back.  So glad you are part of the family. I, also, enjoy your writings   Keep going forward. 

[The Wife]

Thanks Paris.

Well, I'm back to working on the book and it feels good.  Don't know how long it'll take to finish but that's okay.  The main thing is that I'm in process again. It's interesting how when we open up to others, something opens up inside ourselves.  Thanks everyone for inspiring me and welcoming me into this family.

The comment about the twelve-step program comment I made came back to me this morning.  I realized how much I needed to be in a place where I could talk about dialysis or my feelings as a caregiver/spouse, freely.  Don't get me wrong. There have been a few wonderful people whom I've met on another forum that have been open to listening, learning, and simply being there for the days I need someone to talk to.  The other forum just doesn't work for me any longer but I have collected a few email addresses.   

I like writing on a forum.  Helps me get the flow moving.  You know, talking to someone beside myself?  Email is a great way to converse with others but not everyone writes as much as I like or their schedules just don't allow them to email as much as they may like.  I could chat with others a lot but sometimes, I have to do housework, my own work, rest, cook, and those things we as caregivers and women do.  Of course there are the times when I go into the closet, pull everything out, try on what I see, and think.  Or have conversations with myself.

I have to admit, I do like to talk to myself.  Love to answer too.  I usually get along with myself but occassionaly I have to disagree.  I find it makes for interesting conversation.  Don't you think?  When my partner was bed-ridden for several months, I had to do something to keep myself company.  He slept a lot.  I think this period of time started a habit that I've come to enjoy quite a bit.  So much, that one time I caught myself talking out loud to myself in a grocery store.  When I discovered what I was doing, I had to laugh.  And no, I didn't laugh silently. 

I even talk to myself while I'm walking down the street and when I do, I sometimes notice people looking at me like I'm a bit strange.  You know, if they'd just come up to me, I'd happily have a conversation with them.  But you know how some people can be.  They like to judge without really knowing a person. 

Just recently, my partner caught me whispering to myself.  Can you believe this?  I've had so many conversations with myself that now I'm telling myself secrets.  I'd love to share but you know, a secret is a secret.  And I, for one, will sew my mouth shut if someone asks me not to tell.  As I write these words, I can't help but wonder what secret I told myself.  Ummm, too bad I can't ask.  My mouth is sewn together.  Maybe I'll write a note later and see if I get a response.

Anyway, I just wanted to pop in and say hello.   

May joy reach into your hearts and bring laughter to your souls.

Hugs...

[Joanniebop]

You must be reading my mind and putting my thoughts on this forum.
I so love your writing and the fact that you are expressing my actions is unusual but maybe there are other caregivers that are experiencing the same thing. Since we are all in the same boat.
It's the talking to myself thing that is especially weird but maybe not if others in this position are also holding conversations and telling secrets to themselves.
Do you find your self singing out loud to the muzak when shopping?
Please keep on posting and I'd definitely buy your book.

Joannie

[The Wife]

I'm trying to remember if there's muzak in any of the shops here.  I don't shop much.  Well, except for groceries, and at the thrift store.  There definitely isn't music there.

In regards to the talking to ourselves thing - perhaps what we're really doing is talking to our hearts.  Who else truly knows what our deepest feelings are, especially when some of them can't be fully expressed by words?

When we watch our loved ones go through suffering, we want to talk to them about how we really feel.  But then we stop ourselves.  How can we add what we feel to the intensity of what they're going through?  Somehow, it just doesn't seem right. 

Unless we lose it.  You know, those moments when you're so sick and tired of him being sick and tired.  So fed up of him not being able to do anything, go anywhere, or resemble the man he once was.  We end up saying something we wish we hadn't and then we have to apologize, explain that sometimes we also get frustrated.  That this just doesn't affect them, know what I mean?  We want to say more but we don't.  That's when we get into the deeper conversations with ourselves, open closets, pull out our clothing, stare into the corners of darkness. 

There have been times when I have asked myself why I put up with this.  Why I stay when others have left.  And then there are the moments  I've asked what I did to deserve this, to deserve a partner that can't be a partner anymore.  At least not in the way I used to describe partnership.  When I stopped asking, I started to listen. I listened to the sorrow and followed the tears that led me into my own loneliness, my fears, and all I had lost.  And then I found my very own heart, and the reason why I stay. 

Whether we sing to muzak in a shopping mall, or to the music that others cannot hear, the song that is played is felt in the rhythm of our beating hearts.

[kitkatz]

You have a way with words Lady The Wife!

[paris]

I think your words are helping all of us TW.  Some days I feel so bad for my husband. He has to deal with my moods, pain, disruptive schedule, financial situation --he didn't ask for any of this.  He always says that if it were him, he would be whining and crying all the time and that I never complain.  Not true--just try not to do it around him too much! He thinks I am brave! I deal silently with everything and that isn't the best thing to do.   Keep sharing your words. They are beautiful and we all need beauty in our lives.

[ODAT]

I wish the informational videos gave a more realistic view of living with kidney disease. Felt that way watching them with mom. Sure, they don't want to scare people away from a life-saving treatment, but it's not fair to depict it in such a light. Then when you start down the road, you are scared because you run into so many issues you never thought about. I feel so responsible to inform mom of everything, yet scared because I don't want her to change her mind and not do dialysis. Yes, it is her decision and making sure she is informed in a balanced way is so hard. Honesty here on the boards is so much appreciated. Having a window into your world helps others immensely. thank you all

[KT0930]

The Wife, Thank you so much for your words. First, the way you picture the boxes as boxes of chocolate kisses is wonderful...I had a mental picture of walking down the street with a purse full of kisses to hand out to everyone. What a great picture! Second, for voicing what you, as a caregiver, think and feel. I got put back on dialysis two days after our honeymoon, and my husband has never once complained about any of it (except not being able to park in the garage because of all the dialysis supplies). Because he's been so stoic about it, I sometimes forget that this affects him, too. Thank you for reminding me, and helping me to see what he won't tell me. Please keep posting, and I would absolutely buy your book!!

[The Wife]

"If you had known what this was going to be like, would you have chosen dialysis?"  I asked my partner.

"Yes.  I thought it was going to be worse.  Thought I'd have to be wheeled around and spoon-fed." 

I'm glad I asked. 

My experiences are not the same as someone on dialysis but I've had more than my share of heartache and hardship.  I have found that even in the harshest of times, there is always a gift. 

These gifts live in the tulips that open in spring or in conversations where strangers become friends.  They come when love from another outweighs the pain, and in the smiling face of a child learning to walk.  We open these gifts when robins sing us into a new day and taste it in the fruit we bring to our lips.  We feel it when a warm summer breeze drifts in through an opened window or touch it when our hands reach out to caress.

Our lives may not be exactly what we wish but if we take a moment to reflect, we can always find a gift.

In this moment, I am feeling the gift of your hearts. 

Thank you!

[The Wife]

You know, I didn't come here to promote my book.  If it weren't for ODAT's comments, I wouldn't have said anything.  BUT I have, and with your encouragement, I'm starting to see that I need to finish it, that it might be worth publishing afterall. 

That's what I love about this forum.  People pull together and lift each other out of darkness - out of the painful moments.  I started writing my book after three major losses and just when we thought things were going to pick up, my partner became ill.  If anyone is having a hard time dealing with what they've been handed, I suggest starting a journal. 

Mind you, coming here, is just as good.   

[The Wife]

Okay, so this is my third post in a row.  Does that mean I'm now talking to myself? I really need to get out and talk to other women and I had the opportunity to meet with a friend this afternoon but it's cold.  And my sciatica is acting up.

You bring up silence Paris, and you KT bring up how your husband is stoic in what you're going through.  I'm often silent or appear other than what I feel.  When my partner nearly died from the gut bleed caused from one of the drugs they were giving him for his hep c, his friend told me I was a rock.  Inside, I was falling apart. 

We all suffer in silence during certain times but when we come together and share what we are really feeling, the gap we place ourselves in closes, and we walk this journey together, instead of alone. 

[kitkatz]

They tell me I am a rock. Hah! I am not a rock. Inside I am a screaming meame with all the crazies to boot.  I just sit there and take it.  What choice do we have? Running and screaming in circles will  not change the facts that are presented to you. 

[The Wife]

You're right Kitkatz, we take what we're given.  Sometimes I'd like to run around and scream.  Could be fun.  Instead, and when the moment is right, I observe my emotions. 

[MyssAnne]

When crisis strikes, especially when it is someone else, hysterics is not needed nor appreciated. They need immediate help/support, whatever
it is.

I've always been so irritated when someone needs them.  We know who I'm talking about. Those who want the attention for themselves
instead of the person in need, or the person who over exaggerates their symptoms to appear more ill/in need of help than is really needed.

Those of us who fall apart in genuine crises, I can understand. Those I sympathize with!  That being said, I'd rather have the hysterics
later on, in the privacy of my room/car, away from other people.  That person needs me, I need to be there for them, to give them
my support.

It's hard sometimes though. I'll say that.  It's very hard to be the strong person when you're physically not as strong as you used to be.