An Analogy, For Living With Permanant Illness

Thank you Ammre,

Thank you from the bottom of my heart for sharing with me The Spoon Theory. Because of this I now have a way to explain to people what my life with Rheumatoid Arthritis is like. It fucking sucks. But like Lucas says, “Don’t let the Man get you down, Joe!” It’s something I live with every day not out of choice, but out of having to. Being uninsured and having an autoimmune disease is bullshit, but it’s my bullshit that i must be reminded of every time it hurts to make a fist, I can’t put on a bra, or the pressure of my weight on my feet is enough to make me contemplate the logistics of strategic bed-wetting. I can now explain to people why I’m fine one day, using a cane the next, and cringing at moving my cane arm the next. I have a reason to show people why I didn’t get something done that anyone should be able to. Thank you.

The author does not have RA, she has Lupus. Not that it matters, but for the sake of clarity. It also shows that the spoon theory reaches across the board covering both mental AND physical illness. I hope it can help you to understand you ‘sick’ friends, or even give you the words to explain yourself and your ‘sickness. I’ve copied and pasted for ya down below. The original is here

-Samber

 

Published in: on January 12, 2011 at 3:21 am  Leave a Comment  

Probably One of the Best Compliments I Will Ever Receive

During a moment of personal distress, a good friend of mine called to calm me the fuck down, cheer me the fuck up, and overall restore homeostasis to my panic ridden brain. When he realized that I was pretty much over my personal drama and was mostly normal, he started questioning my possibly presenting at TEDTalks (which at this point in time was just a mild miscommunication). I explained how that rumor came to be and responded with “I don’t even know what I would talk about on stage for 20 minutes. I have no clue what I’d present”

He said “just go up there and present you. How and what you do that makes you, you. You have an educated heart and it is just part of you. I don’t think its something you’ve ever tried for.” “Um, educated heart?” And so he led me to Gelett Burgess. After some google-fu I was able to find what I believe to be the out-of-print essay that he was talking of. And here it is for you. I am completely astounded that someone feels this way about me, and I hope I can share that glow with others.

-Samber

HAVE YOU AN EDUCATED HEART?

by Gelett Burgess

LAST OCTOBER I sent Crystabel a book. She acknowledged it, and promptly. But two months afterward she actually wrote me another letter, telling me what she thought of that book; and she proved, moreover, that she had read it. Now, I ask you, isn’t that a strange and beautiful experience in this careless world? Crystabel had the educated heart. To such as possess the educated heart thanks are something like mortgages, to be paid in installments. Why, after five years Crystabel often refers to a gift that has pleased her. It is the motive for a gift she cares for, not its value; and hence her gratefulness.

Everything can be done beautifully by the educated heart, from the lacing of a shoe so that it won’t come loose to passing the salt before it is asked for. If you say only “Good morning,” it can be done pleasingly. Observe how the polished actor says it, with that cheerful rising inflection. But the ordinary American growls it out with surly downward emphasis. Merely to speak distinctly is a great kindness, I consider. You never have to ask, “What did you say?” of the educated heart. On the other hand, very few people ever really listen with kindly attention. They are usually merely waiting for a chance to pounce upon you with their own narrative. Or if they do listen, is your story heard with real sympathy? Does the face really glow?

Consider the usual birthday gift or Christmas present. By universal practice it is carefully wrapped in a pretty paper and tied with ribbon. That package is symbolical of what all friendly acts should be–kindness performed with style. Then what is style in giving? Ah, the educated heart makes it a business to know what his friend really wants. One friend I have to whom I can’t express a taste that isn’t treasured up against need. I said once that I loved watercress, and lightly wished that I might have it for every meal. Never a meal had I at his table since, without finding watercress bought specially for me.

Do you think it’s easy, this business of giving? Verily, giving is as much an art as portrait painting or the making of glass flowers. And imagination can surely be brought to bear. Are you sailing for Brazil? It isn’t the basket of fine fruits that bring the tears to your eyes, nor the flowers with trailing yards of red ribbon–all that’s ordinary everyday kindness. It’s that little purse full of Brazilian currency, bills and small change all ready for you when you go ashore at Rio.

There was old Wentrose–he understood the Fourth Dimension of kindness, all right. Never a friend of his wife’s did he puffingly put aboard a streetcar, but he’d tuck apologetically into her hand the nickel fare to save her rummaging in her bag. Real elegance, the gesture of inherent nobility, I call that. Is it sufficient to offer your seat in a streetcar to a woman? The merely kind person does that. But he does it rather sheepishly. Isn’t your graciousness more cultured if you give it up with a bow, with a smile of willingness? Besides the quarter you give the beggar, can’t you give a few cents’ worth of yourself too?

The behavior of the educated heart becomes automatic: you set it in the direction of true kindness and courtesy and after a while it will function without deliberate thought. Such thoughtfulness, such consideration is not merely decorative. It is the very essence and evidence of sincerity. Without it all so-called kindness is merely titular and perfunctory. Suppose I submit your name for membership in a club. Have I done you (or my club) any real service unless I also do my best to see that you are elected? And so if I go to every member of the committee, if I urge all my friends to endorse you, that is merely the completion of my regard for you.

It is like salt– “It’s what makes potatoes taste bad, if you don’t put it on.” Must you dance with all the wallflowers, then? I don’t go so far as that, although it would prove that you had imagination enough to put yourself in another’s place. All I ask is that when you try to do a favor you do it to the full length of the rope. Don’t send your telegram in just ten carefully selected words. Economize elsewhere, but add those few extra phrases that make the reader perceive that you cared more for him than you did for the expense. No one with the educated heart ever approached a clergyman, or a celebrity, or a long-absent visitor with the shocking greeting:”You don’t remember me, do you?” No, he gives his name first. No one with the educated heart ever said, “Now do come and see me, sometime!” The educated heart’s way of putting it is apt to be, “How about coming next Wednesday?”

And strongly I doubt if the educated heart is ever tardy at an appointment. It knows that if only two minutes late a person has brought just that much less of himself. Truly nothing is so rare as the educated heart. And if you wonder why, just show a group picture–a banquet or a class photograph. What does every one of us first look at, talk about? Ourself. And that’s the reason why most hearts are so unlearned in kindness. If you want to enlarge that mystic organ whence flows true human kindness, you must cultivate your imagination. You must learn to put yourself in another’s place, think his thoughts. The educated heart, remember, does kindness ‘with style’.

Published in: on January 12, 2011 at 2:43 am  Leave a Comment  

Introduce Yourself

Whenever I am asked to introduce myself, I have a difficult time walking the fine line between who I am, and what I do. Only recently am I starting to believe that I have been lucky enough to chose things that define who I am. How most people are more than their job, I have created an eclectic resume of self growth with the gigs I have chosen in my life. I guess I should start from the beginning?

Hi. I’m Samber. This name was given to me by my chosen family. It is a combination of my birth name and my name given to me at adoption. I am 27, and live with the family of my best friend of going on 15 years. Unlike most people I’ve met, I’m looking forward to getting older. I already have my 30th birthday planned :). I am a west coast transplant living in central NJ. My mother tells me that my birth parents were Scottish and Irish. My adopted parents are Irish, Scottish, and Polish. My birthday is in September, but I’ve been with my family since December of ’83. My Mom calls me her Christmas Miracle. We moved out here when I was still pretty little, and have been in Central NJ ever since.

I was raised some combination of Lutheran and Irish Roman Catholic. As in I was raised Catholic, but taught by my Lutheran mom everything about the church. I was never confirmed. My whole life I couldn’t imagine that this ‘one twroo god’ guy made this amazing gift called earth around us and expected us to stay inside a building we made to talk to him. Around the age of 12 I discovered Wicca. And I was all zOMG THEY GET IT!!! So I became a Wiccan. Then I discovered it was not for me. I felt like they had some of it right, but not all of it. Skip ahead a dozen years and several glances at religion and I am now apprenticing to be a Druid High Priestess.

My resume is pretty impressive. I worked daycare at a christian exercise class in the basement of a church, worked in a fish store cleaning the fuckers, dealing with crabs and catching  caught fish in the mornings when the boss came in. I can peel shrimps like a mofo now. I’m a massage therapist by trade, and have retail, barista, waitress, customer service, tow truck driving, receptionist, paintball gun fixing, and grocery bagging skills to rely on. Fuck yeah I’m well rounded. Currently I work as a stagehand and as a health care educator for UMDNJ. My life is kinda awesome.

I’m shamelessly pro-choice and actively fighting for womans/gender/sexuality/racial rights. I camp a lot, I recreate history for 2 weeks out of the year, and run a burner camp in DE 2 weekends a year. I try to be a good person, and people seem to think I am, so I guess my plan is working. One of my many nicknames is Momma, for my unending desire to help, mother, nurture, and feed everyone I care for.

I’m an orange haired, kinky, queer, gender fluid fatty who loves themselves and what I do.

Published in: on January 6, 2011 at 12:36 pm  Leave a Comment