If I could, I would use no words today. The part of my legs which are complete nerve dead, or sensation dead now extend about 10 inches past the knee; I tested yesterday and then a couple times today. I can’t be sure how much sensation I am getting above that, but at least I can feel I pinch as a pinch, however delayed or mild it might seem. I guess I thought that the quads would stay. And while my right arm has almost no pain sensation all the way up to the shoulder, the left arm is still pretty good except for the hand.
I remember in the book Girl, Interrupted about a girl in an asylum/sanitarium for rich girls and how one of the girls. R was getting out and practicing “cooking” and making caramel apples when one of the girls started screaming because R had caramelized her hand instead of an apple and just stood there, not saying anything. I had always wondered what that would be like. What level of pain inside you would need to feel to not feel that? Or as it is now, as I still have function, just not necessarily control of the level of function, muscles connected to muscles I control; reactions from muscles I control but cannot feel? It is an odd world indeed.
Summer it seems is here and many are away, going away. I remain. Is there more to say? I remain. Another week, another week, and pain. I worked today some more on a project which is important to me because the act is important. The action is good. Sadly it seems to eat all my money, but this is my peaches. Linda and I were told, by a caretaker, of a man dying of cancer, on chemo, who asked for peaches. The caregiver thought it a waste because she would buy 10 cans and he would only be able to eat one. I explained to Linda that he was trying to hold on to whatever passion he could feel: to BELIEVE that there was enough for 10 cans of peaches. And that he then went on to pears next and didn’t finish the peaches showed he was NOT a quitter, that he kept trying, between the vomiting, and the fatigue, to care about caring. To find passion in a life where at the time it was hard to find. I respect that. I understand that. For me, I am working, thankful that I am left handed so I can write. A single small notebook page takes over 40 minutes, and then a rest but it is my peaches. And it is good. Even if no one understands.
This is how I feel, today, last night; off and on for weeks I think. More so because people do leave, and I think that is what they should do. But that doesn’t stop it from hurting. And parts of life leave too, things precious, they leave. To admit, or even accept I don’t have control doesn’t make it stop hurting.
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Dang, I love peaches. That would be me, asking for peaches right up to the end. I love everything about them. Their sweetness, their soft firmness, their fuzzy skin, their honeyed aroma. The way, sometimes, the kernel is loose and comes out of its shell, looking like an almond. Canned peaches aren't as good, but they are still peaches and are wonderful with cream. Ah, peaches.
To write or to eat peaches, or to even plan to do it, is to know you are alive, and to hope for tomorrow. I hope that your tomorrow will not feel quite so lonely as today has for you.
So many people leave. I know it never stops hurting. I have lived (except for Dennis) basically a life alone. For years. I still see my sisters, 2 of them a couple of times a year - the others who don't live nearby less often. The last few years, hardly out among people, not even that personal interaction. That is one reason I am determined never to leave you, Beth.
And then for several years, I didn't even have my passions. some dim memory of them maybe. I really don't know how I kept going. Hope & memory i guess & just living day to day. But now, I've gotten one of my passions back & that has made such a difference. And a friend which makes a world of difference.
It's funny, going to PT the last few weeks & actually interacting with several people has been nice. But even casual conversation reveals the vast differences in our lives (but only to me). Questions like "what are you doing this weekend" (well mostly lying in bed), but say that I don't really have any plans. Or "is today a busy day for you?" "Not to busy" (but really just preparing for & coming to this appointment is a major undertaking & would have been impossible just a couple of months ago). I maintain some level of honesty - like when asked if my husband & I planned any trips this summer, I said that I wasn't well enough to do any traveling. And I do have to explain & talk about my illnesses & how I'm doing as it affects the therapy.
Sharon
I am glad you still have your peaches.
I hope you have an orchard. Every day.
As a friend and I used to joke to each other, there's always leaving. I hate the leaving. Sure, we can get all philosophical and talk about leaving as part of life, talk about nonattachment and illusion and I still hate the leaving.
I'm not going anywhere, sweetie - you couldn't get rid of me if you tried. I'm here, even if my crappy arm prevents me from writing much. I figger that's why the gods invented the telephone.
I think my peaches might be blackberries (well and writing/talking). There's a farmer's market just up the street and this one particular guy comes in every Saturday with the best blackberries I've ever had. Plump, black as midnight, juicy and so sweet, with just a hint of tart. Perfection.
Big hugs.
After all the medical carnival and then the trip this weekend I'd be taking to my bed for a few days, without a fraction of your medical issues. And having passion for something is surely what makes you alive as opposed to going through the motions - the scariest thing about depression is the way it insulates you in a cold grey rubbery grip from passion, colour, strong emotion...
Thinking of you even if I don't comment much
I wish I had words of wisdom to ease the loneliness, but I don't. I am not an enlightened guru. I am merely a gimp who, like you, just goes on. Sometimes it's on autopilot, sometimes I take the controls. I keep going because I don't know anything else. You keep going because you are determined to complete one more thing. And then another.
It's a good thing, and you need not explain it to anyone. It is yours, and it is beautiful.
Beth,
The only place I'm going is to come visit you. I am afraid you are stuck with me my friend.
Be glad that you aren't here. Ninty two degrees and 78% humidity.
Hugs,
Laura
I've been away from internet and before that busy with family things (daughter unwell and briefly in hospital) so was checking your blog without posting comments, which I realise was a bit daft, because one-way. Internet access will be sporadic for the next week but I wanted you to know that I'm checking your blog when I can and do care - and send lots of love and best wishes. Your recent posts have said a good deal that's important but I've found it difficult to formulate a comment - I'm thinking about them and you however and hope this knowledge of my thoughts and care helps a little bit.
I'm trying to find a really good postcard for you but lack your gifts in finding the most appropriate card and writing the right message.
I like the video, thanks for posting it. In a few weeks I'm going to be the person leaving (not on a ship, but still...) and it's almost as bad as being the person who's left - I'm working hard at staying excited about what I'm going to and not dwelling on the leaving.
There's a Sophie Hannah poem called something like 'leaving and leaving you' that I really like. I'll post it on my blog if anyone is interested, so I don't clog up your comments page.
Canned peaches? Gross! I don't like canned fruit at all...
But that really illustrates the whole point, I think. This is YOUR time. If nobody else likes your peaches (or wants to shake your tree- ha, ha, ha) they can just go stick their sour apples where the sun don't shine. If you want to write, WRITE! I want to read it, at some point, if it's possible.
Have your peaches, savor the juice, we'll all be cheering from the sidelines.
I wish I had words that would help... all I can do is acknowledge this latest loss and continue to promise that I am not leaving. I am sorry it hurts...
Leaving... "on a jet plane." Sorry, first thing that popped into my head.
You keep writing, I'll keep reading. Not leaving.
Hi-long, rough day today. The music is haunting, beautiful, soothing.
enjoyed the sleepover talk Friday night.
exhausted. must sleep.
Summers here, I'm on vacation, but I'm not going away.I get a week off of work, but that means I get to nap on my schedule, not just when I get home from work. Peaches are wonderful, but fresh plums are perfect. A fresh, sun warmed tomato picked from the garden, and eaten in the humid summer sun..that is bliss and worth waiting for just that moment of ripeness. I think I could hang around for that.
When I had my kids, I had an epidural that numbed me from the waist down. It was a surreal feeling for me. I remember reaching down and feeling my leg with my hand, but not "feeling" it. It would take the brain quite a bit of re-wiring to become accustomed to it.
I'm really sorry that you are having feelings of aloneness today.
I'm not leaving, dear. I think about you many times daily, and you're stuck with me. Straight, married, older, but still loving you (as in love thy neighbour love).
And I'm sticking with you.
Zen hugs, and extra love to drive away loneliness and inner voices,
Neil
Yanub: Er...it was the cancer guy, not me that wanted peaches...and you I guess. Actually my tomorrows kind of suck right now with sort of the offering of mind blowingly sucky in the future, but I don't know, humans do get used to the oddest things. Thanks for your hopes.
Sharon: yeah, I needed to hear this. Thank you. The hurting, the fading of the self, the passions and things you were known for, in boxes, on shelves, like living in someone else's house.
Yes, there becomes less and less ways to connect and the stupid question I hate the most, "How are you?" Alone at night, I make up curses, but then never wish them. To give, for a day, some of them my life and then WALK back to them, with a "So HOW are YOU?" Just a day would be enough. Not nice, right?
So instead I talk about films only to tired or busy to watch them. I feel I took an advanced degree in specialized medicine, but have no one else in the class to talk to.
Elizabeth: some days, some weeks it is ashes, a bowl of ashes, but you eat it anyway, becuause someone has to.
Lene: I used to think I hated the body or ordered it around, until parts of it started leaving, then it turns out I am sort of fond of it; oh well, too late, too smart.
JaneB: A good description of depression. I know that my understanding or lack of understand of time make me and those around me emotionally distressed. I get upset every Sunday because Linda is leaving me. Becuase I can only emotionally feel at most a day ahead, maybe two. Talk about a week but it means nothing. "See you in a week" and "See you never" mean the same thing, "See you in a week", "see you in a month" - is there a difference? Because unfortunately there isn't for me, the words are the same, though to others they aren't the same.
Dawn: Very, very good summation. Days on autopilot. If it were not for the pain, how often would I get out of bed? Not as often as I do. So I guess we can thank the pain and my need for distraction from it.
Laura: I am glad I am not there, I am glad to not be here...oh wait, I am. Dammit.
Kathz: what happened to your daughter? Its okay, I know people go away, and I know my control over myself goes away and control over life goes away. I just couldn't pretend to like it that night.
Defying Gravity: I think I posted another video called Goodbye which you might like, about leaving. This one is called, Breaking.
Veralidaine: I actually am not that big on canned peaches myself. Just searching for something to hold on to. And some days, finding it. The weight of chronic illness that is ongoing, investigations ongoing, change in care ongoing, not yet begun treatment, continual referrals can be crushing. Why do we do it, to sleep and rise and test and test again. When I had the seizure in my GP's office he did nothing, helped in no way, I don't know if he even cleared my head from banging his equipment, just watched, watched, wrote notes. Becuase we are NOT like those evil german doctors who did things like that for FUN, this is science, and better yet, in this system, they force YOU, the patient to show up, here, there, 40 miles away, no choice, no conversation, arrive, perform, take the pain, take the needles, take the radiation. Because somewhere there is still hope of life, or of a quality of life, or of time spent pain free or something which drives me on.
Raccoon: Got a ticket, I'll be someone else's problem, I can doing flopping passing out crap anywhere!
Maggie: yeah, this is your crap day isn't it. I liked Friday night. The music is from The Mission. Hope your tomorrow is better too.
Tammy: yeah, well, as I talk about today, since I have no hunger or taste buds, not really effective ones or really and sensation nerves in most of my body, even the part where there is some sensation. It isn't a 'this is it' today - it is the creeping of it, the knowledge that in a few weeks/months you will never masturbate again, have sex again, at least in that way, that you will probably start using cathaters because you won't know when you are peeing and when you aren't. That you will have to be careful around hot objects because you can drop soup on your lap and not know it. You have other people tell you things you should have felt. And that will keep growing, keep going, until only the neck is left. Already, 10-20% of my face has no feeling at all, so maybe not even stopping there. This is what it means. That when pain is felt, it is probably too late, that there is some exposed sore down past the flesh, that you are bleeding into your sock, that you have atheletes foot so bad most toes are bleeding, that you have giant bruises you only find on shower day. That you become more and more a stranger to yourself, an odd sexless thing, maybe not even human.
Neil: I wish the voices would go, true enough; just too bad a few of them live within blocks or miles of me, heh?
Listen to OUR voices, Beth! And Linda's, Maggie's and Cheryl's, of course. Listen to your friends, listen to the ones who love you. Listen to the ones who do NOT wish you harm. Ignore the negative, dear. You're too good for the negative view. And if someone starts making yo feel bad, tell them they have to go away, because you're feeling nauseous/a seizure coming on/sick/contagious, or something that will drive them away fast. of course, if it's your care worker, that's a problem.
Please remember, no matter how far down your mood slips, you ARE loved, and you are worth of love and loving.
Zen hugs,
Neil
You, you... what do I say?
As I hit the return key, the doorbell rang: Canada Post with a package, and I recognize the tape! Its a package from soeone who cares so much about people that she sends gifts just to share.
How DARE those voices (inner and outer) make themselves known!
And I have togo to work and haven't opened the box yet, but THANK YOU, Beth.
Neil
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