You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran
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.
You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran
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.
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.
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
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
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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!!!!!
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