All the Mornings of the World

[Al]

(I have been a bit hit and miss with forum posts lately. The reasons for this relate to several current threads, so I have taking this as an obligation to start a new one that reflects some of these lines of thought in a slightly different context. Partly, my slothful postings betrays the need to carefully manage my own “spoon collection (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/)”: Without a lot of reserve, it is not possible to take on an unlimited program. Also, in true spoon tradition, choices must be consciously made--in many cases, for basic survival--that most people are blissfully unaware of. On the other hand, there is the need--for me, at least--to keep working (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/2485-were-you-denied-ssdi.html), for many reasons, both material ones and those of human psychology. On the third hand, some days it all comes down to utter fatigue (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/2490-fatigue.html), whence the “pedal” of staying vital hits the “metal” of physical endurance. And yet, all life wants to live. What follows are a few observations on this theme to start us off; I would appreciate the thoughts of all of you.)

“All life wants to live”? Seems so banal, doesn’t it? Yet the simple tautology of that pronouncement begs contemplation of why this is so.

This last week has been busy for me professionally, and quite draining on many levels. The project concerns the world premiere of a new composition by Jake Heggie (http://www.jakeheggie.com/), with a libretto by Gene Scheer (http://www.genescheer.com/), entitled Another Sunrise. (The concert (http://seattletimes.nwsource.com/html/thearts/2018211891_clr16sunrise.html) was last night; tomorrow and Thursday we do the recording.) Commissioned by Music of Remembrance (http://musicofremembrance.org/), and beautifully sung by soprano Caitlyn Lynch (http://www.caitlinlynchsoprano.com/_/Home.html), the music is an extraordinary telling of the extraordinary story of the Auschwitz survivor, Krystyna Żywulska (http://holocaustmusic.ort.org/places/camps/death-camps/auschwitz/zywulska-krystyna/). In short, it is a tale of how ordinary people manage to survive, if they do, in the face of unimaginable (and nearly un-tell-able) horrors, in a world where the assumed rules of life no longer make any sense.

If this seems vaguely familiar to Weggies, that is precisely my present point. No, our tormentors are not humans who would, for tribal reasons, bring evil upon us; yet, for us, certain rules of life no longer have, shall we say, the imprimatur of authenticity. (Simple modesty is often the first “rule” to go: A couple of years ago, the ideal of discussing personal body parts and processes with absolute strangers would have been unimaginable. But other guides to muddling our way through life also become, in the heat of battle, merely that: “guidelines”, rather than hard and fast rules. In that sense, “All life wants to live”, though still mysterious, becomes decidedly less trite. Life, with all its attendant trials--its aches and pains and hardships and frustrations agonies and woes--is all about our recording another sunrise, every morning, until we don’t.

[BrianR]

Very thought provoking Al. While it is my wife, not me, who has WG, we are both "with it" daily as is our 5 year old daughter Hana. I have a very different view now of what to expect from my own life and health than I did before Marta got WG. I believe little Hana too (only 5) has a profoundly different view of life (whatever that means to her) than she would have if Marta had not become ill. I think when one gets hit with that bucket filled with the cold-water-of-mortality for the first time the lens through which we view our life is changed forever.

I very clearly remember a year or so ago when Hana came down with a severe case of the stomach "flu" (probably norovirus) and threw up repeatedly for hours. Typically I expect this would have had the same effect on me as most parents, that being...it will pass like any and all the other bugs she will get in her lifetime. I may have even gotten away with thinking this way but when Hana said in a weak and whimpering voice, after her stomach was empty and she was still convulsing, "what's happening to me", it all hit me like a ton of bricks. For me now there is no such thing as just a simple bug or flu or virus that will go away. In it's place is an ever constant awareness of our frailty and, with the exception of eating well and exercising, there is little or nothing we can do to change whatever our fate may be. So...we look for the next sunrise every day; not just for ourselves but also, and perhaps more, (in my case most certainly more) for those we love.

[Trudy]

Al, I've been familiar with the Spoon Collection for quite awhile as it was made up by a young woman who as I have has Lupus. As an also Weggie I must add somedays I believe we awake with "no spoons", and there are days when we might start with a good collection only to have to shove them back in the drawer hopefully for tomorrow.

In my early teens my mother told me that I had not been expected to live past 5 years of age. From the age of 2 or 3 I had yearly unexplainable life threatening kidney and bronchial attacks involving much pain. My parents always treated me normally never giving me physical limitations. Here I am 63 years later! I've had some rough times, but I also have had a great life - loving husband of 42 years, 9 great kids, 5 wonderful grandkids, and all the people on this forum. If you have a child that is sick, please let them live to their fullest. If you are a young person sick, please keep pushing through it. If like me you are getting up there in years, please enjoy the wonder of your next sunrise.

[Dirty Don]

'Life, with all its attendant trials--its aches and pains and hardships and frustrations agonies and woes--is all about our recording another sunrise, every morning, until we don’t.-Al'

First of all Al, I swear you're a young Sam Clemens...not always on point, but savvy and experienced enough to understand the simple things of life that have always been. Now, while I don't agree with the idea of all life seeks to live...I met the reaper, it's not true...he/she/it was a nice entity & it's easy to turn out the lights, and, at times, preferred. But, for those who prefer the light of life/day and seek to elongate the experience, it is best that we understand that we have a limited amount of spoons and to use them properly is not only preferred most times, it IS a choice we make, whether we be aware or ignorant. So, in short, I love sunrises and count them among my best friends, but I also love sunsets and know that if the sunrise doesn't occur again, it's OK...we are merely the specks of a universe (or more) who go through the elemental behaviors of what we have been given...some get silver spoons, some get more than they need, some...well, we know how it is...it's all about us and our sunrises, yet it's not really...

Thanks for a more thoughtful thread...it's a pleasure to 'hear' you always.

[pberggren1]

If I understand you Al you are saying life is hard. No ****. Some days I get up and have no spoons. Other days I get up and have many spoons and then they are all gone by noon. And some days I get up with no spoons but manage to find a few later on to get me through to what I need to do.

We all have a natural will to live. When Brian talks about Hana saying what is happening to me, it makes me think about my parents and all the caregivers out there and how they react and feel in these crisis situations. It must be downright scary and exhausting for them. I want to live for my parents and for many others. I get selfish just like all of you do. But my ultimate goal for life I cannot speak about on here.

[LisaMarie]

Go reading ..Thanks Al..I must agree this lovely dog has changed my view on life and now I live for each precious moment...I am not lucky enough to have the supportative husband...he can not handle this "invisible disease" ..so we will part our ways and I will go on stronger for it...I start out with very little spoons but hold on to them with all my might ...determine to go to bed with aleast one...and sometimes i do...that is a celebration for me...chocolate anyone

[Lightwarrior]

Ahh Lisa Marie, I wish to wrap you in warm, soft light full of energy. What an utterly disconnected man you had for a husband. Al, you as always are so rich in your philosophical views. I love the concept of celebrating every sunrise until there are none,period. I am reminded at the first of your discussion of a line from Jurassic park which my 20 year old grandson watched so many times when he was small that he knew all the lines. Anyway Jeff Goldblum who played a scientist commented in one of the scenes "life always finds a way". I do believe that we subconsciously struggle to "hang on" mostly, as an ICU nurse I have seen people who struggle and then peacefully decide to "let go". I can almost hear you music playing when I think back on these times. Don, I have heard several stories from patients who we "revived" that make me believe that dying is not a scary or unpleasant experience. Brian, thank you for reminding us what those who love us endure and I love the way you care for Marta, there is something so unique and special about her. Trudy, I am amazed at your strength, I have struggled with this disease for only 4 years and it has been such a difficult struggle and you still enjoy each wondrous sunrise. Phil, you are always inspirational in your own way. What a special post, one I did not expect at the end of a long and trying work day. I thought I would just jump on the forum and "catch" up on my reading. Instead my heart has opened and I am looking forward to waking up to sunrises...until I don't.

[Dryhill]

Today I had a new experiance and one that I do not wish to repeat, for the first time I went to a funeral where the deceased was younger than me. This made me realise that although I am not happy with my health, at least I am alive and can enjoy being with friends, watching a good film or play and seeing the new life that is all around my village (bouncy lambs, bluebells in the woods and the new clutch of various birds).

When my elder daughter was three years old I often took her to a five acre council run garden in Streatham (south London). As she now lives nearby she often goes to this garden but I have not been back there for nearly 29 years, so we decided to cheer ourselves up after the funeral by going and admireing the flowers and wildlife. Of course twenty-nine years of wear and tear plus our beloved WG meant I was going to have some trouble getting around the place, especially as it on a definate slope. I may suffer in the coming days for this excusion, but in my mind it was well worth the struggle (at least there were quite a few benches for this poor old body to rest on). Seeing the attractive flowers, the lovely colour contrast of a copper beech tree next to the new green leaves of a horse chesnut tree with all its "candles" in flower and watching a blackbird having a nice long bath - yes I might ache or feel awful tommorow but today's effort was worth it.

So yes Al, life will always want to live. At times it might regret trying to live, but it will try.

Oh by the way if anyone has any spoons to spare I am sure I will need them very soon. :wink1:

Jim

[LisaMarie]

Thanks for the hug...I am a nurse too and have worked the gamet..icu peds and adult ER OR cardiac med/surg, peds neuro..home health etc....I am doing quality review desk job and sneak out to do infusions on occasions to keep my skills up...I can no longer work the 12 hour floor shifts so i am blessed with the 32 hour a week desk job...the side job supplements so I am good...I am learning to live with no regrets..life is too short to dwell on negative or what could ve been...I am adjusting to the chronic fatigue and pay dearly when i over do it... I want my 17 yr old and 10 yr old sons to know there is nothing u can not do and to live life to the fullest......and to remember their mama never gave up or had no regrets...and lived life:w00t:




Ahh Lisa Marie, I wish to wrap you in warm, soft light full of energy. What an utterly disconnected man you had for a husband. Al, you as always are so rich in your philosophical views. I love the concept of celebrating every sunrise until there are none,period. I am reminded at the first of your discussion of a line from Jurassic park which my 20 year old grandson watched so many times when he was small that he knew all the lines. Anyway Jeff Goldblum who played a scientist commented in one of the scenes "life always finds a way". I do believe that we subconsciously struggle to "hang on" mostly, as an ICU nurse I have seen people who struggle and then peacefully decide to "let go". I can almost hear you music playing when I think back on these times. Don, I have heard several stories from patients who we "revived" that make me believe that dying is not a scary or unpleasant experience. Brian, thank you for reminding us what those who love us endure and I love the way you care for Marta, there is something so unique and special about her. Trudy, I am amazed at your strength, I have struggled with this disease for only 4 years and it has been such a difficult struggle and you still enjoy each wondrous sunrise. Phil, you are always inspirational in your own way. What a special post, one I did not expect at the end of a long and trying work day. I thought I would just jump on the forum and "catch" up on my reading. Instead my heart has opened and I am looking forward to waking up to sunrises...until I don't.

[Al]

Thanks, everyone, for your thoughtful comments. The conversation is, I think, an excellent one, and each observation deserves a response. But not tonight. Let me count spoons; then I have things to say to each of you, and to all of you.

Al

[Dryhill]

But not tonight. Let me count spoons;

Al

As I expected I run out of todays spoons and have had to borrow some of tomorrows, I just hope I have left enough to get through Friday. I hope these are not Euro spoons because they might suddenly disappear.

Jim

[Lightwarrior]

As I expected I run out of todays spoons and have had to borrow some of tomorrows, I just hope I have left enough to get through Friday. I hope these are not Euro spoons because they might suddenly disappear.

Jim


I understand Jim, I also hope to have enough spoons to get through tomorrow, that means that I don't have to spend any time and it goes in my bank rather than part of my paycheck. I would love, love to have enough spoons for the weekend. My smart sweet, grand-daughter, Brianna turns 5 on Monday and we are having her party at Chuck-e-Cheese on Saturday. Even though I will just sit and watch it will cost a couple of spoons. So I hope I have those spoons.

[Dryhill]

Even though I will just sit and watch it will cost a couple of spoons. So I hope I have those spoons.

I hope you have enough spoons and if I have any to spare, I will send them by courier. Enjoy your grand-daughters birthday outing. Five is such a great age, still innocent yet you get to sense the young adult they are going to be.

Jim

[Lightwarrior]

I hope you have enough spoons and if I have any to spare, I will send them by courier. Enjoy your grand-daughters birthday outing. Five is such a great age, still innocent yet you get to sense the young adult they are going to be.

Jim


Thanks Jim, you just made my heart sing. Hold on...there is someone at the door. Ohhh, it was a a courier with a whole box of spoons...Thank you!!

[drz]

I will take a day off too and donate a couple if it will help you enjoy the day. Wouldn't it be great if we had an energy bank like an electric co-op where we could help each other out and loan and borrow energy as needed.

[Lightwarrior]

I will take a day off too and donate a couple if it will help you enjoy the day. Wouldn't it be great if we had an energy bank like an electric co-op where we could help each other out and loan and borrow energy as needed.
You may have something there. There is a lot of work being done around energy exchanges in the nursing world. We should pick a time and all of us concentrate on sending good energy to one of us...Sangye for example. Then she could tell us if she felt the love and warmth.

[freakyschizogirl]

I always feel love and warmth when using this forum but would be cool if we could channel it to one person at a time who needs it more.

I seem to have enough spoons to last me most days - only ocassionally do i find that i lose them and get told by my fiance to take it easy.
On reflection before diagnosis a lot of my spoons went to waste where i would sit at home and do nothing. Now i get up, go out and do things. Very rarely do i just sit at home and do nothing anymore - even when ill, i grab all the spoons i can find and take on the day.
I'm sure most of you feel the same.

[drz]

Right, nothing like a good spoon shortage to help you make wiser use of the ones you do get.


I always feel love and warmth when using this forum but would be cool if we could channel it to one person at a time who needs it more.

I seem to have enough spoons to last me most days - only ocassionally do i find that i lose them and get told by my fiance to take it easy.
On reflection before diagnosis a lot of my spoons went to waste where i would sit at home and do nothing. Now i get up, go out and do things. Very rarely do i just sit at home and do nothing anymore - even when ill, i grab all the spoons i can find and take on the day.
I'm sure most of you feel the same.

[Al]

Brian: I'm not sure that “when one gets hit with that bucket filled with the cold-water-of-mortality for the first time the lens through which we view our life is changed forever” is always how it works. I have observed that often a person will get “stomach flu” and think that they are about to die, and that might be preferable to living with the ailment. Then, a day or two later, they think, “Huh. That was weird. But now, I'll never be sick again in my life.” On the other hand, Young Hana's exposure to her mother's chronic illness surely gives her a depth that is rare for a five year old, given the fact that mortality is, given our cultural dynamics, largely off the radar. (The more I learn of little Hana, the more I love her!)

To be sure, there are reasons why we often consider mortality discussions to be out of bounds. When competing daily in the workplace, in our schools, and in our other institutions, that tall skeletal personification wearing a black hoodie can be a serious distraction. But ignoring him (her? it?) is also a blindness. H.G. Wells wrote a short story, “The Country of the Blind”, that asks the question whether blindness or sightedness presents the more appropriate concept of reality. There is a point to this. Nevertheless, I vote for seeing the universe in a more nuanced, more dimensional way. Our ancestors, in fact, had the possibility of death around them as a constant backdrop—just like everyone with a serious disease. Blindness can provide something of a competitive edge, but it is, since we all die, artificial and not sustainable.

My heart goes out to you and your family; may you continue to enjoy sunrises long into the future.


Trudy: It seems that we are in similar situations. I will be 64 in September, and have been married (to the same wife!) 41-plus excellent years. I have, though, many fewer kids—a total of two—and no grandkids...yet, though (and I am announcing the publicly for the first time) we will find out what that stage is all about this October, those sunrises permitting.

Spoon husbandry is critical for Weggies, of course. I would not have fully realized this without my own conscription into this war. You have known this, it seems, pretty much since birth. That you can “enjoy the wonder of [every] sunrise” is remarkable, and, I think, utterly important.


Don: “A young Samuel Clemens”? (!) Ah, Don, I appreciate the association, Mark Twain being one of my most venerated writers. But, really, I am no “young” anything. Even at my best I am a geezer and a Sick Old Man. And some days, I am immensely old. And, yes, I am familiar, and even on a first name basis, with your “reaper”, whom I referred to above as the guy in the corner with the hoodie. But here's the deal: That fellow can be thought of as the Big Demon in our anxiety closets. We all have such closets and many demons. How to deal with them? We are all different. Some people will cram all kinds of stuff into their closets, and always be afraid to open them for fear of explosion, What if those demons have multiplied? What if they are particularly nasty on account of being cooped up so long? Others take their demons out to air once in a while. They let their tormentors torture them a while, then put them back. Still others keep their demons carefully boxed, and on the high shelf. Fine, until the boxes come open...Personally, prefer leaving the closet door ajar, so my demons can come and go as they please. Every once in a while I'll take them out for a drink, how's-the-wife-and-kids sort of thing. “You can tell Uncle Al everything”: Demons have troubles of their own, don't you know.

At any rate, of course you are right: People do come to terms with their mortality. There are a lot of very complex (and scientifically and philosophically controversial) reasons for this. Nevertheless, I think your contention proves my point. I have known cramped and contorted people in their 50s and 60s who, like Ebeneezer Scrooge, really hate life, yet are afraid to die. I have know others into their 80s and 90s who love life so much that they could die tomorrow and be happy. As for me, I mentioned being on a first name basis with the reaper. Let's call him “Bill”. If Bill were to take me on a long walk tonight, I would not see another sunrise—but we all die sometime (even as the Sun). I would leave many things undone and not experienced. Yet it is far better, I think, to die with a lot of food left on my plate than to have forked it all up and be looking around for more.


Phil: Life is hard. But that is not precisely my point. Rather, my interest is in what it means to our humanity to overcome those travails, why it is that we seek those new sunrises. And why, despite our personal selfishness, we wish this for others, like you with your Parents; like Brian with Marta and Hana.

And, Phil, I appreciate your unspeakable “ultimate goal”. Neither will I speak of it. It is enough to note that, regardless of one's creed or numinal aesthetics and sensitivities, it seems to be a crucial part of being human to have HD&VftF (Hopes, Dreams, and Visions for the Future). And futures need both spoons and sunrises.


Lisa Marie: I, too, want to give you a big hug, and to apologize on behalf of males everywhere. Not to get too personal, but I am guessing that going to bed with at least one spoon would be improved by having a loving, understanding, and supportive husband there too. Yet the sorry truth is that, for the most part, guys just don't deal with their partners' ailments so well. Still, some of us are better than all that. Look at Brian, for instance, who is not only greatly supportive, but has gone to the trouble of contributing to our forum. I have never been tested, but I believe I would be one of the good guys as well. The fact is that an “invisible disease” is still a disease, and can, like WG, last a lifetime.

I applaud your strength, and that you can celebrate the life you have, with all its beauty. (I'm sure your kids help a lot, too. Even more, it is important to know that their Mama is a surviver, one without regrets.) The next time I contemplate chocolate, I will think of you.


Christy: When you open your heart, it such a large one that it warms us all. Your comments to all posters were spot-on. May you, too, have all the sunrises in the world yet to shine upon you.

Yes, “life always finds a way”, though I am not thinking in evolutionary terms so much as how we, the living, break trail through the cosmos. Again, death need not be frightening; it may even have a certain warmth to it. Yet...not yet, if you please. There are miles to go before the setting of the Sun. (Maybe “the woods are lovely, dark and deep, but I have promises to keep...”.) Still, if I do not finish my chores, the Sun will yet rise tomorrow.


Jim: you call yourself a taxi driver. In fact, you are a poet, burning bright in your urban forest. I suspected as much anyway. Then I see that you are a Blake aficionado. So you must not deny it, though it may be fair to say that you are a poet in the same sense that Indiana Jones is an anthropologist.

I have been to many funerals and memorial services of those younger than I. Last Saturday, for instance. Patricia, a former colleague, had a fast-growing, fatal ganglioneuroma. She left a 13 year old daughter. I would love to have explored, that day, your daughter's garden. And to see the beech and the chestnut and the blackbird in its tub! Sometimes, the payment of a couple of spoons is not an expense, but an investment.


Everyone: I am fascinated with the idea of a “spoon bank”: If you need one, take it; If you have a spare, leave it for others. As I have said elsewhere on these pages, I think that facing WG on one's own is an impossibly difficult task. One needs a family, however the family is defined. But what constitutes a “family”? In a sense, that is, in fact, what the forum is all about—at least to me. Community is important, and we have a great one.


Al
.

[Dirty Don]

Spoons for all...feel so good lately! Thanks for the wonderful replies Al...communal thoughtfulness is so much more powerful than most peeps know or understand...keep on keepin on!!!!!

[pberggren1]

I think we better send a life time supply of spoons now........lol.

I think he is probably running low now.

Thanks Al for those posts. If you want do discuss philosophy or theology just private message me. I have many years experience in both.

[Dryhill]

I have been to many funerals and memorial services of those younger than I. Last Saturday, for instance. Patricia, a former colleague, had a fast-growing, fatal ganglioneuroma. She left a 13 year old daughter. I would love to have explored, that day, your daughter's garden. And to see the beech and the chestnut and the blackbird in its tub! Sometimes, the payment of a couple of spoons is not an expense, but an investment.

Al.

Al, thank you for your observations. Yes Wednesday was a good day, despite going to a funeral, and was well worth the effort expended. I am really blessed with my daughter and am grateful that she is my very good friend as well as being my "little" girl.

Jim

[Al]

Al, thank you for your observations. Yes Wednesday was a good day, despite going to a funeral, and was well worth the effort expended. I am really blessed with my daughter and am grateful that she is my very good friend as well as being my "little" girl.

Jim
I'm right with you, Jim. My "little girl" is a true blessing (as is the rest of my family). Life comes. Life changes. And life goes. Yet we know those blessings.

Al

[BrianR]

I'm right with you, Jim. My "little girl" is a true blessing (as is the rest of my family). Life comes. Life changes. And life goes. Yet we know those blessings.

Al

Yes...yes indeed we do.

[Al]

Yes...yes indeed we do.Spot-on, Brian. I've never met either Marta or Hana, but I know that you speak truly.

Al