Saturday, August 16, 2008

I am an emotional athlete

Reading a post of Perpetual Beginner, as she talks about the ways an athlete or martial artist knows when they do it right. She describes her practice of her kick again and again but when you kick the heavy bag, if it starts to rotate then you haven’t done it right. It reminded me of my life.
Much of what I did was and continues to be is in absolutes, even in writing. While I never write perfectly, I either came closer or further away, each day.

Athletically that meant, did I do a lunge correctly, if so, do it again 100 times a day, do it 200 times. If I did not, have it corrected and do it until it can be done without thought, do a parry-lunge-advance lunge attack, do it 50 times in a row back and forth in the courtyard, with only the moon above as light and with my blood pounding in my ears. Do a lunge into a fleche and practice it simply because you have heard that women don’t have enough “power” to do this move (I actually got a point using this in competition).

Back when I ran long distance, get the body in rhythm; find out what is lacking, the body or the lungs. What complains? Am I out of breath, or do my legs feel like concrete. Work on that, push that. I sought a perfection beyond what was expected, beyond what those around me did. Exercise to exhaustion and THEN time your next five miles. Exercise to exhaustion and THEN do the basic 20 minute warm-up of lunges, advances, retreats; where is your arm, where is your wrist. Push for perfection, at all times.

I miss that more than I can express. That seeking of of the physical moment were you ARE perfect....for two seconds, and then the next lunge, or the next mile is to be run. When I biked, I biked to class, I biked to work, I biked over mountains for fun, biked across British Columbia, biked when Linda and I got together. That was when I learned that some people don't LIKE obsessively pushing themselves. That if I wanted Linda and I needed to tone it down a bit on bike rides. Yet often, our early dates were me running laps around an abandoned outside track, trying to go faster than the flies and mosquitoes while Linda timed me (hey, I had marathons coming up, can't miss a training day!).

That is not who I am now. It is not possible. If I talk too much, without interruption, I go into seizure, even while on oxygen. I push myself and the beast of the disease will push back, without thought or remorse, leaving me to be carried to bed, to lie there moaning for hours. I cannot seek that or any kind of external perfection. I cannot eat without biting my lip or tongue, so much has my tongue weakened; my mouth a mass of open sores. My hands tremble, my fingers tremble, I try to pull of toilet paper after peeing to pat down, and I can’t, I take two tries, I drop the toilet paper. This is the body I life in.

I won’t have those feelings of control again, except as a gift on a good day. An hour or two a week maybe when I am out on a training wheel for a 5K, or at badminton.

Now, I send postcards, I blog, I focus on Linda and the people on a list I have. A list of people who while I may hope care in the same way, I first must struggle to care about, whether there is any sign of them caring or not.

I work on postcard, I work on replying to comments, I work on blog posts and most important I work on staying emotionally connected, even when people go away, and when I can’t understand what that means. Becuase I don’t have the ability to sequence time, so all I understand is 'go away'. I get about 10% feedback from what I send out. Some days, I get great feedback, these are the times, when as an emotional athlete it is easy to connect, to care, to be there. There are the days which are empty, where I have worked hours and hours and there are a couple comments, or I have sent out 20 or 30 postcards and heard nothing at all and yet I turn back to the list and the postcards and I start again. Those are the days when I am emotionally exhausted, when, like as an athlete before, everything inside me tells me to quit, to give up, that no one cares about this but me.

I go on. I try to go on. I wobble emotionally. Much like the spent athlete, the easy things are not easy, do not look easy to others anymore. I am told by others this is a waste; a loss of time, of money, of energy. I look emotional clumsy to myself, to others, I feel alone and disconnected. It just means I need to keep working. This are the times every athlete, artists, human being who cares faces.

I get up the next day, and take down a list, look at the postcards, spend 10 minutes to find a postcard for a name and write out the address. During those ten minutes I will care as much as I can about that name, that person I know only from words on-line (and the two to three hours it will take me to finish the postcard).

I do not have a body that can be athletic. I struggle, often through pain, or distraction, through fatigue, exhaustion, to care, to be there emotionally for someone, someone I do not know, someone I will never hear from, and I know it. This is the way I challenge myself, the way I choose to rebel against a society where it is always someone else's problem and against a medical and social system I am now part of where actually caring and doing something for someone, something that isn’t your job, that you aren’t getting paid for, is unheard of. This is the way I try to be the type of emotional reaching out I will rarely if ever receive from a system that is supposed to support me.

I will send out letters, I will send out gifts and from some, from the majority, I will never hear back. And when the time comes, like last night, sick, bleeding, I was taken off by Linda still working on the name of those for postcards, those for gifts. Lay in bed, in delirium of unstable body temp and pain. I will never know if the card makes a difference or not, for most of the people I post to. So the challenge in the second and third time sending to a name, is to care just as much as the first. I am an emotional warrior challenging myself to send out the message, “I care about you” at the times where there is no evidence, when I feel most in pain, the most isolated and send the same warmth, the same caring.

I do this because to do so is good. When I know or receive it back, that makes the load lighter and connections are made, when the days of silence occur, it is heavier but is not why I train or act. I do so because it is good, and because I can push myself to try and be, for a few minutes in this person’s life, what I did not receive in my illness.

For my first year of disability, for over a year, I received more concern and more action on that concern from a person who sold me a muffin and a coffee than from my social worker, my specialists, test technicians, schedulers, case managers and other people paid to supposedly give a damn.

If you give me your name and address, I will not wheel by. No, I can’t make you better, I can’t solve your problems though I might be able to listen in an email. But I will keep sending postcards until you tell me to stop. You may be lying on a bed, in depression thinking no one cares, but I will, and something will come for you. You may rip up the card as soon as it arrives. See, I don’t know. I have to put myself out there. Put the card out there. Some days it is hard, very, very hard. Sometimes I want to curl into a ball and demand that I am not coming out until I get love and caring. Some days the health baggage, the pain baggage the change in conditions drive me to the point where I can barely see or hear. And within that I look at a name and prepare myself to open, prepare myself to search what I know, to find what might make this REAL PERSON, not just a name, but a REAL PERSON happy, to give a damn about this person. Even on days I don’t give a damn about myself.

This is my discipline, this is my art, this is rebellion, this is how I am a warrior, this is how I am fragile and open to be hurt.

32 comments:

Lene Andersen said...

It's very Buddhist, innit? To do something with no attachment to an expectation for reciprocation. To love, to care, to give and for the pure act of giving to be the only thing there.

Inside me, it feels like all that white space in Japanese paintings. Beautiful.

FridaWrites said...

My router went down as I hit send, so I'm not sure if it posted. Let's see if I can reconstruct most of this (I had copied and pasted at one point):

I used to push myself like that. Other people didn't understand how I could keep going long after they'd given up, such as with moving or other kinds of huge tasks. Low strength, high stamina.

Since I quit my job this week, I may have a lot more time on my hands. That is if I don't take a job I *can* do to help with bills. There are a lot of people I want to reach out to more, a lot I want to do for others. But I worry that without employment I'll get depressed or feel guilty about not doing enough. Your cards have always arrived at times when they are so needed--I save them, as I do with almost all my correspondence from close friends.

I'm usually reluctant to email separately because I worry about the amount of time/energy you'll expend to write back but you're in my thoughts every day and even as I do other things (I keep telling my friend who's staying here about you--though she's already read your blog some and really likes what you say.) I consider you one of my closest friends and wish that I was able to travel to see you or lived local to you and could actually help out (there's a lot I can do despite disability, not as much as ableds can do), and better, spend time with you. I did find a postcard this week of a place where we've spent substantial time and have saved it for you. I need to get stocked up on more stationery/cards and stamps myself since I can't make PO runs--I like sending mail too and want to send more than I have. In these email days, the handwritten word is really to be treasured. I received a card in the mail this spring from someone telling me what a difference I'd made in her life (and I didn't feel I'd done much, but it means a lot to her)--that's something I keep for difficult days. I know me sending more letters like that would also mean a lot to others.

yanub said...

Ooh! You've posted and it isn't even 3 AM! Now what will I do when it is 3 AM? I guess I will just have to upload pictures from Port Aransas. When I have them on Picassa, I'll let you know. Assuming any of them are any good. I took lots of pictures with the sun reflecting off the preview display screen so badly that I have no idea if I caught anything or not.

Carapace and I have some other postcards to send you than the ones we already sent. If you didn't get those first ones, well, you will get them soon, I hope. And we will be sending more. It made the trip more fun to find cards for you, so even though you were stuck in Victoria, you came with us to Mustang Island. You also took a stop in Goliad. And this must be why you are tired, all the traveling and you didn't even know you were doing it.

Victor Kellar said...

Well, I'm here. I don't always comment because often I am baffled an ddismayed by what I read and don't want to pass that on to you

Collette and I have appreciated every card you have sent us. I think we have at least e mailed you back every time. We were touched ... and I mean really touched ... by the package you sent us. We talk about it frequently

You should be seeing something from us soon. That is Part One. I hope it brightens your day just a little.

You touch people Beth. We know you are here. We think about you. Collette and I will try harder to express that to you. I don't have the power to give you back "that moment" you once could find, but if being here helps in any way, I will do better to let you know ... I'm here

Perpetual Beginner said...

You are an emotional athlete. The same attitude that made you keep running when your legs felt like they were dying is keeping you attacking your life when your legs really are dying.

You're more than an athlete; you're a warrior.

And I'm so stoked that I inspired a blog post by EFM! Plus I got another postcard from you today! It's a banner day!

cheryl g said...

This is why I have said before that you have an incredible generosity of spirit. I know that you do genuinely care about your cyber friends and family. You display that caring with each postcard and each surprise package you send.

You also display that warrior spirit that is so much a part of you in everything you do. You are just an amazing person. I am glad you reached out to me.

Elizabeth McClung said...

First, this is not a guilt thing like the voice of your mother in your head - I appreciate every card, and every email and I also know that some people have lives and conditions that don't allow that - sometimes that is me too!

Lene: I think so, I think it is doing something because it is right, which is Buddhist and Christian and a lot of the religions, to go on whether hurt or not, becuase it is good, and that is enough.

Frida: Yeah, I pushed myself like that, and when you hold yourself to YOUR standard, a lot of people don't get that.

I too consider you a close friend and do try to email back as often as I can (if you email right before a seizure and I am in hospital however for example... or rather, much like your life - stuff happens!).

I'm challenged I think by your final thoughts, that I too need to make clear to people how they have affected me, how my life is more positive because of them - to let myself be emotional exposed because as you say, that is most often what people want or need to here - that they made a difference.

Yanub: Sorry, it is usually my tenacity which makes me post at 3:00 am, not my sense of planning. Don't know what to suggest for your 3:00 am times - do you want me to send you some anime to watch?

I'm glad that trip was more fun and that I was able to travel here and there while stuck in Victoria (or Jubilee) - and I am glad you made it back without losing too much skin or glowing in the dark.

Victor: I know you are there. I wasn't trying to make an attack and apologize if that was somehow understood. I have appreciated your emails immensely, read them to Linda. They were the good days, the days it was easy, and when I wanted to just send you and others who do give so much back postcards endlessly (but I can't, because I need to go in order - to have some form of discipline beyond what makes me feel good - if that makes sense).

I really appreciate you two (sorry Miss Hayley...three) and how you are now part of MY life. I just read what Perpetual Beginner wrote and remembered so much of what that life was like and how now I don't have that PHYSICALLY, but I do in an emotional way. And when someone says I sent the right card on the right day or said the right thing, I feel that moment again, but of course, then I need to focus on sending out the next set of cards!

Perpetual Beginner: I'm glad you got the postcard, must take a long time for the postal guy to FIND you - I hope you liked it. Yeah, I am having a hard time transitioning into a body with such strong limitations. They can take away my job, or my sports, but I realized, I still can be there, trying, again and again for what matters.

A Bear in the Woods said...

I think it is the way of the higher life, to give in what way we can, always, and to face the fear full in the eyes.
I guess to me, being a warrior is simply not quitting.
I love that about you.

Wendryn said...

I understand pushing hard, harder than anyone expects. I've pushed harder than I should (although now, in my 30s, I can't get away with it as easily as I used to - I managed to screw up my wrist, elbow, and re-injure my shoulder because I ignored pain for too long). I am impressed at how hard you push every day, knowing the pain and problems you have to work through to send out a postcard or a box. It doesn't take much time every day to send a postcard from my end, but when we get one from you it matters more because I know how much time and effort had to go into it.

For us, your cards make a difference. They have invariably made us smile, and they sit on the mantlepiece above the fireplace where we can see them. This summer has been hard for me, and knowing that what we send makes a difference and that we will periodically get postcards has mattered a lot.

I wish I were closer. I wish I could do more. I hope you do know that you make a difference, by blogging, by letting us know you are still there, by writing postcards and sending gifts. You matter a lot to people you have never met. That's got to mean something, somehow.

We have a quote we use a lot around here. "Brick walls are there to see how much you want it." You've been slamming through walls much of your life, as far as I can tell. You still are, by reaching out despite what you are dealing with. It may feel like you are chipping away with a chisel instead of slamming through them, but you are getting through. You are making connections no one expects.

I hope the gargoyle and the strange jokes make you smile sometimes. Your cards get a smile from me every day when I walk into the living room. Sounds silly, but it's true. Thank you for continuing to push, even when it's harder than I can imagine.

SharonMV said...

Yes, Beth! You are an athlete still. And you have brought me back to my training for emotional athletics. I was never an athlete, but had many things at which I exelled. Right now, I'm struggling with this post, as I'm too tired to spell correctly or punctuate. the first thing that goes seems to be the ability to us capital letters- somehow can't manage to strike the two keys at the same time even though I think I'm doing it. Over the years I lost my academics, my career, my hope of a family, my friends, my aquaintences, the small joys of daily activity among people. I worked hard to maintain emotional connection with people - often working for weeks to make a visit possible & then paying afterwards in pain & sickness. And I built new friendships through internet needlework groups & and 2 local craft groups.

And I did become an endurance athlete - not a long distance runner, but a survivor of the unrelenting marathon of chronic illness. I knew what I was good at - i could endure. The pain (so many different kinds), the constant acute illnesses(my reward for being among people), the loneliness, the losses, the uncertainty & frustration of being under diagnosed.

Then came a time when my body failed me even more. When the cycles of illness became one long downward spiral. And I started to lose what few things I had left. Then i felt like another kind of athlete, like a boxer severely overmatched or someone in in one of those movie fights, the knock-down drag o brawl. I'd get up & get knocked down, I'd get up again & get knocked down harder. soon everyone is yelling - stay down, stay down! Even my own mind is screaming it. But I don't listen - i go on, try again only to be beaten & knocked down again. Finally fear entered me. And I knew i had to pull back, not from physical activity - there wasn't much of that even left in my life. but I had to hold back, hold in some of that emotional energy & support that was flowing out of me. I had to keep more energy for myself in order to survive.

Finally, about 6 months after this, I was diagnosed with Lupus and a couple of months later with CVID. Then all my energy was focussed on getting the treamtents that could help me. But it was over a year before I had even small improvement. Then I started to read your blog Beth, just a few months ago, last spring. And now i am in training again, learning again how to be a friend, what it's like to have a friend. to feel a part of a community. How to speak my truth. And to know it has been heard.

Sharon

Elizabeth McClung said...

Bear in the Woods: Great to have you comment, I have missed you and your insight. Yes, to give what we can, as we can and try not to give in to the inner or outer voice.

Wendryn: I wish I was back, pushing the way I used to but I guess this post is about that loss as well.

Your cards have made a tremendous difference in the lives of Linda and me, you are a verable presence, not just because of your postcards but also your gifts, your commitment to let me know that I am not alone. That you do this in a time that is difficult to you, this summer only makes me think more of you; appreciate you more. Your discipline in YOUR emotional commitment to me.

Yeah, there sure seem to be a lot of brick walls lately, like I said in a plaintive voice to Linda about the roofers and the owner, "It isn't like I seek these conflicts out, HONEST, I JUST WANT to live a quiet life for a while!"

But that just isn't going to happen. The owner has called to say he is going to compromise, the workers will start at 7:00 or before as always, and work until 9:00 am - but then take a break. I am not sure how he sees that as a comprimise, but then, it seems roofing which increases equity beats out medical condition and hospital trips every time!

Your Gargoyle is on my desk where I can look at Chester looking down at me usually with an expression saying, "You know, you take too many things WAY too seriously!"

SharonMV: I REALLY hope that some day you will record this, as a book or in a blog. As your experience has helped me, in dark times and frustrations, in pain, in lack of sleep, in helplessness, in the medical crunch, in the body falling apart, in crying from losing it all, you are there; telling me that it is survivable, that I can go on, speaking the truth of experience, and so I do go on. Not one but many days I have continued, or drawn back from the irrational frenzy pain has driven me to because of your words.

You are an athlete, you are a fighter, you are the one who endures, who survives, who knows that survival is what allows anything else, and now you are getting back some of that. You are a mentor, an example, I would say an "inspiration" but more realistically, a belief to hold on to, a faith when mine is gone, a hand in the darkness - that you are there and you know what I am going through.

Yeah, you got knocked down, and yet, here you still are, a valued part of the community. I think everyone who recieves your art on a postcard knows who grew the flowers and pressed them, who made the stamp. I am thankful for your gifts and prescence in this little blog community and yes, you are very much heard. Thank you for being here and sharing, in pain, in insomnia, in times where I couldn't put two words together much less capitalize. Thanks.

Evil Lunch Lady said...

Wow! Just wow. How you go on is lost on me.
I will join your postcard project and send one in return. My husband collects very old postcards so you may get one back that is something you are not used to:)
I could never push myself as you do, before or after your illness. I admire that kind of strength. We can learn from you!

Judith said...

Sometimes it is difficult to know what to say.
Sometimes there is nothing to say.
And if I was there listening and present and not saying anything, then it would be obvious that there was understanding and solidarity between us.
How do you convey that sense of concentration and attention in an answer here? I don't know. It's how I feel - like I'm listening really hard. But, I have nothing that is not trite and inexcusably shallow to reply.

Victor Kellar said...

Oh, I did not take it in any way as some kind of attack, please understand that nor was I at all being defensive (hard to pick up "tone" out of typing I know)

Just hearing your need and trying to help

Anna said...

Hi, BAD HANDY men, BAD HANDY men how long can it take? Congratiolations on fifteen years. Must be great, except for the bad stuff. I really, really hope and wish that you both will have some opportunity to rest and get your energy back so that you can celebrate your anniversary the way you want.

I still pray for you, and mind you:) not in a "I'll- pray- for- you -and- then -piss- off- and never- contact- you -againg -way." But more like "I feel like there's nothing I can do so I yell at God to make you better, and your people around you strong and the crazy doctors sane."

Finally, I've got your cards in my glasscabinet, where I keep photos, notes and cards that matters to me. Thank you for sending them.

Good Night

Abi said...

I had that date where one of us went round a track repeatedly. It was him, not me, and he was on a bike. I timed him. Happy days!

I suppose that you are sending bits of yourself out to people. While at an intellectual level it is easy to understand that people may have other things going on and find it hard to get back to you, it is much harder to really know this at an emotional level.

You are doing good things, though. I don't think that you can know how much good you are doing; I expect that it will spread beyond the good you do directly.

Neil said...

Hi: I'm home from the investiture of the new Prince of Avacal. He won the throne by right of arms, and in the Investiture cermemony, "poisoned" the old prince and knocked him off. Only, it turned out the old prince was only MOSTLY dead, 'cause he came back to court and received many honours and accolades. Yes, the Society for Creative Anachronism is a great experience.

I'd say more, but I'm exhausted, and it would take too long. Ill try to update my own blog some day very soon.

As for pushing yourself, some days you push to ride faster or longer, and some days you push to get out of bed. Tonight, I'm pushing to get INTO bed, since I woke up at 5:00 am. Photographed a beautiful sunrise too. But that takes it back to me, me! And that's not what this should be about.

I confess I thought of you lots, dear Niece, and missed not having your blog to read this morning. Prayers (railing at gods) and hopes for good nights and better mornings for you.
And xen hugs, of course!
Neil

Wheelz_of_fire said...

You are the Warrior. Your strength and power shows through in every letter that you type. Keep going, simply because you can do no other.

Lots of Love

Kita

Neil said...

Mmm, getting the govve just right when cycling is great. I love the feeling of having the right mind-set, with the butt and the arms feeling comfortable, and the legs pumping to keep the pedals spinning at the perfect speed, and the momentum keeps you flowing along and you feel like you could go on for hours. And a litle while later, you realize it HAS gone on for hours and you've ridden 60 or 80 kms, and you're ready for another 100.

Darn, I haven't felt that for several years, I've just realized. I'll have to work on that.

No post last night: I hope it was because something good happened. I know it's not necessarily a bad omen, and I clearly remember telling you that it's okay not to post sometimes... but it still give a slight foreboding feeling when you don't. Bad English, I think. No matter; I just hope you got laid by some smokin' hot blonde chick.

Zen hugs (better than the xen type- I really was tired last night, I guess),
Neil

Lisa Moon said...

Hi, Beth,

Six months ago I received a diagnosis of a progressive, incurable disease called Complex Regional Pain Syndrome (formerly known as Reflex Sympathetic Dystrophy). Well, pain doesn't sound that bad, right? Haha, I'm well aware you can attest otherwise. CRPS means living with 24/7 pain the likes of which I would be hard pressed to wish on my worst enemy...

Since then, I suppose you could say I'm stumbling (or more correctly, hobbling) through the stages once theorized by Elizabeth Kubler-Ross; you know, the 5 stages of grief/tragedy? Denial, Anger, Bargaining, Depression, Acceptance, which can come in different ways or combinations.

For me, I'm mostly filled with the Anger stage with some of the Depression stage creeping in... honestly, I've been feeling a might bit sorry for myself.

Not to sound totally cheesy, but I DO feel inspired by your writing so often, because your warrior/athlete spirit jumps off my screen, nudging me to Fight! Fight! and to carry on however I am able.

THIS IS YOUR POWER, this is THE highest thing I think one person could do: to give hope and friendship to so many people, to show by example that you can choose to fight the good fight, you can stand up for your rights, that you can CARE so much about others when you are facing so many difficulties yourself.

Yes, we've never met, but I feel like my new bloggy friend, Beth, is out there, pushing on for all of us who must struggle against our own obstacles.

When I've read your posts, I've laughed, I've cried, then laughed some more... and been a better person for it.

THANK YOU for reaching out, even when it's SO hard for you to do so.

I am grateful to you.

Lisa

Dawn Allenbach said...

I love the postcard you sent me. I carry it with me every day.

Veralidaine said...

Where are you, Beth? Is everything as OK as can be expected? Have you been incarcerated for killing the annoying roofers? Did you finally go homicidal on the GP? Did the Neuro get you locked away?

I'm worried, please check in and let us know you're still this side of the Styx!

Tammy said...

Beth,
I don't know what to say..yet again. After I read some of your posts, I know that whatever I say,I just won't be able to truly express how I feel. This is one of those times.
I worry that we haven't heard from you in several days. I hope you are just enjoying some time to yourself.
I miss your words.
Tammy

Elizabeth McClung said...

Evil Lunch Lady: Hey, some days it is lost on me too! Thanks for joining in the postcard project. An certain number of postcards (18 or so) were sent and another 13 are currently in stage three of the five stages of being worked on. I think maybe I should learn to take a break now and then. I am glad that people can take something from what I narrate.

Judith: How well put, that on the internet, we don't have the place for the kind of intimate sharing of a story where another person is there, listening, being with you.

Thank you for writing that out, I too on many posts feel the same and while they may be posts I dwell on in my mind, I never leave a comment because, I don't know what to say except, "I'm listening" and I'm too chicken to just put that.

Victor: Oh God, I mean this is my project and I know you do your editing projects and while I would like to steal some ideas watching your videos, I appreciate what you do but I am not worried about it. The reality is that often for the same reasons I cannot always answer email or even comments, people cannot answer back - or are in a headspace where the card is recieved but they are not in a place to response, or in some cases, maybe not that interested, and I wanted to talk about knowing that and continueing anyway.

Anna: Yes, and bad contractor too! 15 years seems like a long time doesn't it - hmmmm, Linda should irritate me FAR more than she does, she is still angelic and I am still....well...."driven" is the nice way of saying it.

Thanks for your yelling at God and thanks for letting me know about the cards. And for Pippi.

Abi: Hmmm, I wonder what he was training for? Sprints?

As for the intellectual and emotional, how well put, it often seems that the days in which there seems a cold wind inside of me are the days which have the least feedback, which are quiet, which seem to say, "Why are you even alive at all?" - which isn't true, it is just the interpretation of the fact that people are at summer camp or watching olympics or the rest. But does the emotional know that? The intellectual continues anyway.

Neil: Wow, SCA seems to have a lot of events in a very short period of time. Since the previous prince was poisoned, and YOU are the medicine man as it were, how is it YOU were not a suspect. I would immediately suspect you, becuase I would likely do the poisoning and then point to you! (what are friends for!)

Yes, get to bed, get some rest, what a busy and somewhat surreal life you lead.

Wheelz of Fire: true, the temptation to stop, the pain, is there, but if I must go on, then I want it to be as best as possible. I would say to those who make such a deal about these athletes who I know, train very hard, train every day, I was there, not one of them but one of those who wanted and would have been happy to be number 19 out of a 19 person race. But even that took pain, training, discipline, strategy and work. Yet, yet, these people and the commentators have NO idea the commitment and pain it takes to keep a series of doctors appointments, to keep a promise to attend a birthday party, to get to the store and back. No idea. Chonic disability can be a hard core endurance event, that makes the pentathalon look like a breeze (hey, they get to quit! They get to sit down at the end!).

Neil: yes, that space when it is neither lung nor body and you are in the groove and it is like floating on a series of musical beats, that goes on and on.

Nothing good happened, I just ran out. No time as the builders were coming, no flex or extra time because I do no want to end up hospitalized again. The world ended, the clock ran out.

Lisa Moon: I feel like we should talk because we seem to have a kinship in PAIN.

If you ever get to the point where you find someone to bargain with, let me know - the closest I get to that is, "I could stand this, I could live like this....if only things would stabilize"

What I did not know when I wrote the book, Zed was that the mythos I wrote about is what I would live. Sure, a lot of those experiences in there are about me. But Zed to me was part of MY Power of Myth of women (see, there may be a man of a thousand faces....but where are the women?). So it was the story of the eternal warrior, who fights, who suffers, who fights again, becuase for women, we do not overpower, or rise as the hero others look to, but we do fight, for rights, for recognition, for equality, for quality of life, for individuality. I cannot work, and so I work; this is my fight. I am alone, so I reach out, this is my fight. My resistance.

Last night I went splat, but here I am again. because there is more to do! Tonight, I go to badminton!

Dawn: I'm glad, things went a little pear with the hospital and day after so your package is a wee delayed (like six days, sorry about that, just thought you should know - I went as far as I could, and what I needed to do was too far for this week - ack!). Thanks for letting me know about the card. Next time, more fish heads!

Veralidaine: I have appointments for the rest of the week and today, I was on the phone, or the phone was all over me, with various groups, or agencies (oh, I wish I was an agency) - and yes, the roofers but also to fulfill a promise to go outside four days a week - so out I went for 25 minutes! And now I recover for a little longer than that!

Thanks for checking up on me. Ack, I have something to send, but I think I did already. Hmmm, now what was it I was sending?

Tammy: I took more time on this one, I wanted people to understand me, to get it. If people want to get it. This is how I translate my athletics into something, this is how I push myself. Some weeks a victory, this week not. This week a face plant, big time.

Now I am getting up and starting again.

SharonMV said...

Elizabeth, so glad you posted again. I was a bit worried last night. Hope badminton is good tonight.

My insurance co. has switched me to another agency for both my medication & nursing. Just when I thought everything was set for my IVIG today. Now, I'm still waiting for them to call & schedule my infusion. Hope it will be tomorrow.

Sharon

Tom P. said...

I am stunned that you would send out a gift to someone and get no response. Your cards mean a lot to us and we treasure each one. I think I'll blog about that!

Donimo said...

After a long list of heartfelt, intelligent and lucid comments, I find it tough to say something original at this point. I agree with so much of what has been written.

I recognize the loss of the perfect moments physically. I struggle so much with my longing for those times. I know the feeling when you aren't thinking at all, when you are just this fluid, balanced creature that is so very alive. I try to temper my grief with the knowledge that most people have never felt anything like that and I was blessed many times with moments of pure transcendence. At least I have those memories. Blah, blah, blah... I still want to fly like that, damn it.

On the postal front, it's been so great to get something in the mail other than a bill or a bank statement! You've sent me such dirty, tender, thoughtful cards. I'm so glad I met you.

Processing Counselor said...

Hi Elizabeth-
This is the first time I've read your blog. I have a dis, Cauda Equina Syndrome. And I was curious about your comment about the porceline something as that is a problem I have, too. I guess it's something I never thought about, the weakening of outer AND inner muscles. Thanks. I'm a rehab. counselor, too, don't hate me.
Joanna

Elizabeth McClung said...

Sharon: I stuggle on a bit, like you - will they EVER give you peace. I finally have another regular care giver for one day, so no more surprises in THAT area. But I worry so much about your IVIG. Why is your insurance company so fickle, so busy switching things. Ack!

Tom P: I appreciate everying you have sent and your emails too, but in times of emergency or overload, I can't always respond. I know that for me (and I hope you forgive me for that), and I know that for others as well.

Donimo: Thanks for commenting, I too don't know what to say. For those who have felt those moments, what else can describe it? And yet, there are not life, it just was a very, very good part of life.

I have to believe that there are other parts of life like that, parts here in this hidden disability world and I will find them. Seek them out. It just seems like everything, they come with a higher price.

As for the postal front, your cards are picked and the stamps are on them so expect something in ending this week or staring next, as the thoughtful dirtyness goes on (you can warn Sarah too!).

Processing Counsellor: Joanna - first, can you email me at mpshiel at hotmail.com and I can send you a card - I make very good ones?

Thanks for listing the syndrome, I looked it up and yeah, ow and well, the biology of disability marches on. We are humans and humans do what humans do. Why would I hate you. My something person (PT, OT) said that I seemed very much in touch with my body - I was like, "Um, when I don't want to cathaterize, or have to hand evaculate, I tend to spend a LOT of brain time on possible solutions!"

SharonMV said...

Dear Beth,
finally - my IVIG is set for tomorrow. The medicine is here, equipment from the new nursing company came today and I just call a call from the actual nurse. So only 6 days overdue! Now my insurance case manager is being helpful & doesn't seem to wan to put up with any more delays or problem with this new company (not new to the insurance co,). Maybe now she & her collegues will realize that it's not so easy to set up this kind of specialized (& not common) infusion. The first 2 times my former specialized pharmacy & I did all the work to set up the nursing. Anyway, I hope all goes well tomorrow. at least I know how everything should be done & can coach the nurse if she is not familiar with IVIG infusions.

Sharon

Tom P. said...

My dear Elizabeth - every response we get from you is deeply treasured by all of us. We know that you can't always respond. We know that there are many other people who also consider you a friend and need to be responded to before us. I will admit that if I don't get a response right away I am a little sad, but I understand and there is nothing for you to apologize for.

By the way, I blogged about your postcards! :)

Dawn Allenbach said...

Honey, no worries on the package. I'd rather you rested.