Wednesday, September 08, 2010

How to love 1,000 people? How to live palliatively.

I am supposed to say “I hope you had a nice long weekend” because it is polite. The truth is I REALLY hope and hoped that you had the best weekend you can remember.

I am not sure who reads this blog but this weekend Linda, Cheryl and I, did postcards and for all of Monday, I sat and wrote postcards, and I had matched postcards, for hours. Since I don’t have a memory longer than 40 hours or so, all I need to do is look at about 500 postcards then try to find the right postcard for the person. We did 80 post cards. I wish it was more. I have about 36 pages of 30 postal stickers, all with a name and an address: Yes, that is over 1,000 names.


I wrote those postcards the way someone living in solitary writes: dreaming of you, your life, imagining what is, what could be, and hoping that your life has a small edge left for me, if even to observe. They are sent now. No picture of the postcards lest it spoil the surprise.

I live in a beige room. I sit in the same wheelchair spot.

Today I saw photos of me having a drink: last Thursday or Friday. But I hadn’t remembered going out. I don’t remember. I have no memory of it at all. I just remember sitting in this room. Do you understand what that means? No matter how often I go out, I’m always here. The same wheelchair spot.

I hold back writing in the blog so much: because it isn’t all my story or is just something I don’t want to burden you with. So, a lot of what happens I don’t write, sometimes because I am simply too sick. I am sick a lot now, I have degenerated conditions that have no solution, no medicine, no machine, just sick and if I get sicker, go to hospital for morphine or get better until tomorrow. I don’t write and publicly thank the individuals who sends me things off the gift list. I want to. I don’t do that because I don’t want to hurt the people who are having hard times, or no income or who just made a different choice. But please don’t think it didn’t and doesn’t make a difference.

I was up until late last night, but I couldn’t sleep but a few hours. My brain tumbled on the fast spin cycle through real and horrific knowledge, things I am helpless in regards to, and some things I don’t want to know but know anyway. And in the midst of that, midday, I read the manga Dengkei Daisy 1, and Crown of Love 3. And even though I was having a hard time of it physically, I got that warm feeling from a good read, a REALLY good read: that post orgasm type of mental peace. Those minutes I felt those flickers was the best feeling I have in my memory. If you want to know what difference your gift made, it made the one good warm feeling I had, and the one I will have to hold onto for the night and day to come.
I think that is what they refer to in palliative stage as ‘taking the good moments when they come’.

So if you have a relative or friend who is sick, or recovering, or homebound, or has had an accident and a voice inside whispers to call, visit, or tells you to send them something, or buy them something off their wish list… listen to that voice inside. No one else is going to do it. And find me the person that doesn’t regret NOT reaching out, because they were afraid; worried; trained to be polite and not bother a person; other reason here, and I will show you a sociopath, or someone who I hope will learn what children know. When you care about someone else, that feeling flows over and MUST be expressed, and so you draw a picture or write, or get a gift.

Desmond Morris, who wrote The Human Animal, says we are hard-wired so that we can’t care about more than the size of a small village, about 200 people. I say Desmond Morris has a theory, and it is flawed.

I know over 1,000 people. I know what you like, what you don’t, if you are funny, if you are shy, if you are gregarious and I care, and I’m working on loving the lot of you, if you will allow me by letting me in.

If you want to know what difference an Amazon Gift certificate makes to me, or to so many others, it is this: choice. I don’t have a choice how much oxygen is in my blood, and I am usually a little purple/blue this time of night, my feet are black. I don’t have a choice if my heart has lots of erratics or even stops beating for seconds at a time (that one is like a Bear sitting on you to fart! Even when it finishes, it still HURTS). I don’t have a choice how much hurts, or how bad, or if one leg is gigantic, or if I have progressed on Congestive Heart Failure, or taking a breath is like swimming toward the light, every six to 10 seconds. I can’t control when my blood pressure spikes or drops or my heart barely pushes blood, or the seizures, the malfunctions of the kidney, liver, lungs, the bleeds into the brain, the breakdown of skin though I sure try. But I can go through the great catalogue that is Amazon, and see if there is a romance for Linda, or a volume of a missing shojo manga we all like, or some PJ’s, or a nightlight, or something to make Linda smile, which makes me smile, or vice versa.

That’s what I think about when I write postcards, and cards and when I order stuff and send stuff out and every time I receive a gift certificate, or a wish list item, or a card, or letter, or gift.

Are you lonely?
I am. Aren’t you?


wendryn said...


laura/yanub said...

Hi, Beth! I'm testing out using my openID instead of blogger to comment.

You've given me something to think about in this post. I wonder why it is that visiting has fallen so out of favor. Not just of the sick or the shut-in, but in general.

Looks like blogger is still making it nearly impossible to comment. It's not registering OpenID, either.

Baba Yaga said...

Loneliness is the human condition, isn't it? And all but unspeakable: thou shalt not admit to loneliness. (Why?)

Yes, I'm lonely. Sometimes at the same time as utterly exhausted by people!

I can sort of understand only knowing the beige room. (Now I want to come around with some paint and a creative child or two and make you a mural to get sick of. If only teleportation worked, we could do you as new one every so often.) I have a few beige years filed away...

I'm sorry, though. Until you spelt it out, I hadn't realised that of course the walls must become all that exists. You say these things very clearly, which is a Good Thing, even if the things themselves very much aren't.

I think you have grasped the great truth that 'care' and 'love' are verbs. The limits change accordingly.

Bonnie said...

Do you go back through previous posts and look at the photos? Just wondering.
I'm glad you explained why you like gift cards so well. Many of us have been told that gift cards are a cop-out, rude, that we should select actual gifts. It's good to know that you LIKE the gift cards.
Me, I like surpise gifts...the anticipation of opening the box or package, undoing the packaging or wrapping, and finding the SURPRISE!
Do you like surprises as much as I do? I already know you like manga and squirrels!
Another question: would it upset you if I sent cards featuring my church or its icons? You've said your parents belonged to an abusive, weird church and I know that for some people from that background, any reminders of Christianity are painful. I do have access to some lovely, artistic cards but don't want to send them if they will make you say ick.

Linda McClung said...

We did a lot of postcards this weekend and I hope the recipients will enjoy them. I'm looking forward to next weekend because we've agreed it will be a kids weekend (as well as a few adults thrown in!). Kids cards are fun because I get to pull out animal stamps, some which are for very young kids and hardly ever get used.

Am I lonely? Yeah. We talked about this the other day - how our support network is long distance and how we need to develop one closer to home.

It's one of the things I miss about working - the cameraderie of colleagues and being able to talk about what's going on in our lives. They may not be close, but they are interested.

Another thing I miss about working is the regular paycheque and enough disposable income that I can give you fun money or gift certificates so that you can make choices - what to buy yourself or others.

I'm glad you had a couple books that gave you a warm feeling.

Raccoon said...

About Desmond Morris: I think, in some respects, that he's right. Most people only pay attention to approximately 200 people. They are the people that they see every day or every few days.

You, because of your bad memory, go through your notes on 1000 people every couple of days. That means you are reminding yourself of 1000 people every couple of days.

Myself, I don't think I interact with more than 100 people a week; of that 100, I might know the names of 50; of that 50, I might know more than the names of 30 of them.

Remember to tip your chair backwards, and lift your legs. It should help with the swelling.

cheryl g said...

I had a really nice long weekend. I got to do postcards and get creative and artistic with rubber stamps. Even my shirt got new color although it is washed out now.

I think Linda and I can do some things to make your room less beige. We could put up scrolls and switch them around so you see different ones. I would like to help you go outside more often so you can see other things. We can take pictures when we are out and maybe you will look at them and feel like sometimes you ARE somewhere else outside the beige room.

I am glad you had books to read to give you the warm, peaceful feeling. Bless the gift giver for they gave a gift beyond price.

I come every weekend because I care and I want to see you as often as I can. I want you to know me as the caring, steady presence in your life. Desmond Morris has some interesting thoughts but I know I care for way more than 200 people. A number of those people I have never met in person but that doesn’t matter. We have conversed. We have come to know each other. I care about them and their well-being. Perhaps the 200 person limit was truer before electronic communications and rapid travel when you just didn’t have contact with that many people.

I am lonely at times, especially in the wee dark hours. So, I reach out and sometimes someone reaches back.

Lorna, Bob and Liam said...


I'm sad for your isolation, and hope that when we respond here that you realise we're with you, even if only "virtually."

There's a growing body of theory that suggests that we are hardwired for community and compassion. Thank gosh this is going to start (slowly, I'm sure) to chip away at the Western world's sick love affair with competitiveness and individualism.

Sending warm thoughts and hugs!

SharonMV said...

Dear Beth,
yes, I am lonely! But you have made me less so - you have given me that smile, that moment of joy which comes in both giving & receiving and the everyday knowledge that I have a true friend. I am happy to be there among the thousand in your heart.

I am sorry that you are so ill and that so many things bad and scary things are going wrong with your body. I am experiencing that in a smaller way, dealing with one complication after another. I am glad that you still have pleasures like reading.

I wish you could have a thousand visitors bringing you gifts and chatting with you, holding your hand, reading you your favorite books. Very tiring though - maybe one friend to visit each day for a thousand days. I wish that could be true for you and that I could be one of them.
And yes, some paint for the beige room - a mural or two.


Lene Andersen said...

I'm there with you in my thoughts. Doesn't help much, you can't feel it, but it's all I can do. I could go on about wishing I had money so I could solve some of your problems for you and having a functioning shoulder so I could write you every day, but that doesn't help, either.

It was a great post, really showed the reality of what it is like to live inside your body. I wish it wasn't so long for you.

Veralidaine said...

I love and care for far fewer than 1,000 people, but Beth, you are definitely in my number. I hope when you get them the things I sent you lately will cheer you a bit.

In a different way, I sympathize with your feelings about the beige room. My house is mostly white and honestly white freaks me out a bit when all around me. I want to paint! But can't since it's a rental. And can't hang many pictures, either. I have a beautiful lithograph that I can't hang--too big, not allowed to hang anything needing more than a picture nail.

What about differently colored curtains for your room? That might be a way to brighten it up, and you could have someone change them for you when one color gets dull. I am still working on a craft project for your room... a long, slow one, but getting ever closer to completion. It won't make much difference in the color scheme but maybe you will smile at it because you will be able to see it and know that it represents many hours of fond thoughts and good wishes from your cousin.

JaneB said...


thank you for being a friend, for reaching out

Neil said...

Oh, would that I could live near you; not necessarily to visit EVERY day, for that might get old too, but to visit whenever you needed a visitor.

I get lonely at night sometimes, even though my Beloved is sleeping beside me. Weird, but it happens. It's those thrice-damned nighttime voices, with their side rumours, bringing out all the uncertainties and little nagging worries and irrational fears.

Your writing is still very clear and to the point. The point is that you love people, and need love too.
Well, I hope this little bit of love cheers you slightly and chases away those nighttime voices for a few minutes, or better, for a few hours...

Love and zen hugs,