Monday, March 30, 2009

Sara is dead. Facing death: I look, instead of passing by.

Sara from Moving Right Along is dead. The email to tell me she was in decline had been bounced Friday and come today; I didn’t read them, Linda did. When I had my diagnosis and was flapping around with the newbie panic of ‘OMG! I have a terminal disease!” she was one of the two people who wrote me to share her story, and that a diagnosis, that conventional medicine of what should make a person dead doesn’t mean they still aren’t making bread for fun years later.
Between us, and the advise of a salesperson in Sidney, Sara grew a prosthetic leg from the ‘leave it in water and watch it grow” Halloween legs. Halloween: when society openly tells everyone that WE are the nightmares. She sucked me into NamBloPro (still sounds like some porn star contest) and I ended up blogging daily over a year. I kept sending her postcards and before Xmas she emailed that she was watching TV, resting and feeling crap. We had suspected that after she didn’t mention the 13 mm tumor being removed that tumors were everywhere. So we guessed that as historically against Chemo, that she was taking what pleasure from life when and while she could. I don’t know. I hope she got my last postcard a few weeks ago and smiled.

Eric, her partner does NOT want emails or phone calls: he is grieving. And to have one of the two people who said, “Life goes on, even against death…” now dead, it shook me. I cried for Sara, and I cried for the loss of a dream that with enough attitude, or baring your teeth, that somehow death is overcome.

I was taking a bed day and a few minutes before the news I was having problems drifting in and out of consciousness. And when I saw the green and the circles, and then I woke, lifted my head from the pillow and tried to find my manga. I thought, ‘this is how they will find me one day....maybe today, just slumped over and that will be all.’ Linda who found me fading in and out, and called me back to consciousness a few times, later confided she thought that also.

It still hit me. Sara gone? Here I was crying because of Sara and Death. But I didn't fear death? Well the one which is living and dying, which simply is; the other is the emotion and the grief that goes with it.

I am in the end stages of autonomic failure, and how long that takes could be a day, it could be a month, it could be longer. I just keep going. Sara had been doing what Linda, today, said to me she was happy to see me doing: reading manga and watching TV – doing things that give warm feelings and pleasure. Taking in quality of life. This is what Linda felt I should be doing more.

I have been writing with different friends about how I am not the same person I was a year or two ago. And this is not the same blog it was a year ago. I am not quite as funny, not near as active, not an activist, my fights are personal, against my body, against my limitations. I am not as clever, nor do I have the memory. Those who have decided to remain friends I am thankful for because if I was in an equal relationship I am self absorbed, selfish, and not all that interesting. I ask Linda why she puts up with it as she isn't getting as much out of this relationship as she puts in! She just looks at me funny and says, "but you would do the same for me." So I'm selfish (I am a bit)....OR I am dying, I have finite boundries, extreme pain, severe limitations and failing systems and I am trying to strive to become more than just that. But you know what they call someone with cancer who strives, pushes themselves, and achieves what no one else in that stage of cancer has done before? They call them: a cancer patient.

Once out of the world of able bodied understanding, of signs of excellence no one knows what cost it takes to act, to send out a letter to a friend, to support emotionally someone. We press on through the tangles of expectations of the able bodied world, where “accommodation” is where an able bodied person is a bit more patient with you because you are ill….until they become impatient and then, well, that excuse isn’t going to cut it anymore. They can’t know what it is like to try to write emails or do complex tasks everyday with the equivalent of a severe flu AND weights on all limbs AND pain that screams in your mind all the time so much that you have say, “I’m sorry, can you repeat that.” And the person gives the “Oh geez, why don’t they just TRY!” sigh and repeats with emphasis.

Dying has made me wiser, but a very steep learning curve. All I learn about my own foolish preconceptions I try write for the blog. I am sure if I did it again, I would die better. But no one has the time to hang around in this purgatory, which is it, pain and a middle zone of fear, of hoping each day is the same and maybe one better and knowing that it WILL get worse. Well except maybe Lene, which is why she is hired to speak for those who haven’t the words. That she is still sane is a credit to her determination, and a blessing to those like me, who fade in and out of sanity at times. I, will of course spend my days, as many as I have both taking the time to find what enjoyment or pleasure there is, from manga, squirrels and other wildlife, to sitting with Linda.

But in the end, no matter how I get dressed, no matter how pretty I look or clever I write, this is who I am: a person who last night didn’t know what “Four” meant. I am a person who has one to two grand mals a day, a person who burns, literally, as my body cooks my organs, my heart so erratic that the majority of beats are a mix of the four of five erratic. This is me. This will be me until the minute I die. You can dress me up but I will always be fighting, what, the immune system in my head, the Lichen (yeah, the stuff that grows on rocks) which is turning my vagina to liquid, the lungs that don’t work, the sweat glands that don’t work, and yet I live on.

Sara’s death asked me how I want to be remembered, because people often don’t take the time when you are alive and still fighting to do tasks to have a eulogy, that is saved until you are a tin of ashes. I hope I am remembered as a person who while overly determined to go against the perceptions of convention, the greatest of these is that I am not the disease. I am not the disease. I am the person who sends out postcards, I am the person who sends out letters, and pictures, and packages to people. I am the person who sends out emails. This disease robs me one at a time of my ability and strength to continue as this, and the time I need to recover. Or as Linda says, “you give until you are empty and then you keep giving, even when no one supports you.” So, sometimes I collapse, or go a little loopy. Sometimes I take a bed day. But to give, to care, to reach out, to live I Cor 13. To prove in this day and age that love wins. In a society where love gets no value, no priority, I want people to know that though I failed everyday, I loved, and I loved those never seen, and received the love of those unseen gratefully. Love Wins! Love is the victory of the ill, the disabled, the chronic conditions, those who have no voice except their own, and no community but the one they create.

I Cor 13

Though I had the gift and understanding of all obscure things and all mysteries or the power to level mountains because I had love, I had nothing.

Though I give riches away, and give my life for causes, because I had no love, it meant nothing.

Love suffers longs yet is kind. Envies not.

Love does not behave with disregard, or seek personal agendas.

Love does not rejoice in injustice but in truth.

They bear all things, they believe all things, they hope for all things, they ENDURE all things.

Where there be ‘secret truths’ they fail, where there is only knowledge it fails, or special people or powers, they fail. Love never fails.

There are far less people reading than a year ago. Some didn’t see disability, disease and what I learn living it as relevant or interesting. Some just left for other reasons. Some died. I am sorry for those who left because while I have spent 14 years in post high school education, I never LEARNED like I did in the last two years. And while I am dying, in fact I am death, I am also so many other things, and if you can only see the mask on death and disease on me, then you miss everything else.I hope like Sara I will be: a friend, a fragile individual, a fighter, and someone who tries in her own way to keep caring. Death will come, and they will find me slumped over. But not I hope because I didn’t believe that that which is truly eternal is no longer relevant in the 21st century, or in any time, on any continent.

Exit stage right.


wendryn said...

Oh my dear, I am so sorry to hear this on top of everything else.

You will be remembered, by me, by Xander, by our families, as a brave person, a caring person, a loving person, who gives and keeps on giving. You are a good friend, a strong person even when you are feeling weak, and someone who refuses to give up on people even when the people in question are twits. You are intelligent, even when life takes away bits and pieces. You push us. You make us think.

You are all those things and more, but mostly you will be remembered as a giving, caring, loving person.

How's that for a eulogy before you need one? Hopefully long before. You matter. You have changed lives. You have made us better people. You are loved.

Tammy said...

aww Beth. I'm really sorry about Sara. I hope her friends and family find peace in this difficult time. I don't want to imagine the pain of loss they are feeling.
I'm still here, and I'm still reading, I still care, and I still wish I had more time to spend online. HUGS to you and Linda.

FridaWrites said...

I'm very sad to hear about her death. I liked her posts and talking with her very much. Thanks for letting us know.

I piled up all the postcards and notes I have from you yesterday--they are like a happy talisman during difficult times.

FridaWrites said...

PS, I meant I am pulling postcards out because of what I wrote to you about that's coming up in my life (i.e., not directly related to wonderful Sara). What you wrote here reminded me of the cards because of the Corinthians 13 and your giving nature. I often don't make the connections between my thoughts clear, or rather my thoughts are not too connected.

Olivia said...

How will you be remembered, Elizabeth? As EFM. Determined, caring (relentlessly), and always an inquiring mind. Never accepting the status quo on anything. You have made a deep impact on the minds and lives of many people. You won't know about all of them as many people read blogs without ever leaving a comment (or asking for a postcard).

Shea said...

You are right, and love never fails. You are loved, and I know that you are not ever alone. I always remember you saying a while back that because of the love of Linda, you knew there was a God. At least I think that was similar to what you said. I've often thought some of us were lucky enough to see little glimpses of the face of God if we were able to look and actually just see without all the questions.

cheryl g said...

I will remember you as my sister, as a generous and loving person, as a beautiful soul. I will remember you as one who has taught me many important life lessons and challenged my preconceptions. I will remember your strong will, your courage and your determination. I will remember your unflinching honesty as you examine your life and the world around you. I will look at the gifts and cards you have given me and feel the love all over again.

You are a teacher, a friend, a defender, a nurturer. I will remember you as those things. Mostly, I will remember you as Elizabeth McClung who I love and who I am blessed to have as family.

Raccoon said...

Okay, I guess I completely don't understand about growing a prosthetic.

Reading this, the first thing that popped into my head was "I'm sorry for your loss." And then I thought about that saying. Am I sorry that she died? No, not exactly. It's more that I'm sorry that you lost a friend, someone who could empathize, sympathize, really understand, what you're going through, because she was going through it herself.

I know that you've tried to explain, have tried to give us insight, into what's going on physically & mentally & emotionally, but it's not necessarily something that we will understand. She did, she GOT it.

I'm not leaving any time soon. Nope. Not happening.

yanub said...

I had just read of Sara's death over at Gimp Parade. I am sorry you have lost a mentor and friend, but glad you had her in your life.

You will be remembered, as you remember Sara, as a person who lived each moment fully. And as someone who has sent out her life to others. Everyone who has had a postcard or an email or even seen you reply to their comment has received a bit of your life. Your body may be failing and soon not able to contain your life, but hundreds of people will have a little spark of you with them, and will pass it on. And Sara, having sent a bit of herself to you, is also part of what you have sent to us. Thank you.

thea said...

Thank you for sharing about the loss of Sara, and for sharing my favourite and most important verse about Love. I'm glad Sara was around for you.

Yes, you will be remembered because you fight for love. No matter how long that happens, it will always matter that you did it.

When I take actions in love that are hard, knowing that you act in love when you are hurting very badly helps me keep going and keep loving. So your love is growing, and having good effects all over the place. And I am thankful.

Elizabeth McClung said...

Raccoon: The leg - sorry, during halloween they have these glow in the dark leg for like $3.99 and say, "put it in water and make it grow!" so Sara tried to make herself a spare prostetic leg and after like 36 hours it was about as big as a pinkie. Well, I bought one and the salesperson said it is basically like rice, you just keep it in there and it will grow - so sara did another one and and a hand and got the leg to grow inside a 2 liter bottle of water which was sort of freaky and a little bendy to be useful but fun to take pictures of. She also grew and extra hand...just in case.

Wendryn: Sara had style, and she reached out to me, which I really appreciated.

Thank you Wendryn and Xander, I am supposed to say something clever or do it back but it is late and I will say what Linda said: "Other people used different words and hedged up to it. You wrote what they wouldn't; She's dead. That what makes it hurt, and that is the coda.

I think that is probably not the eulogy I would have wanted a few years ago, but it is the one I want now. Thanks.

Tammy: I think about you (and Gwen and Wyn, how is he? And Kate?). I know you are pushed to the limit and then some. Linda said she would steal a bit of the line from Sara's partner about how not to call or email now or if you do, she won't get back to you for a while as she is grieving.

Fridawrites: Yeah, she saw vegetables as lewd objects; how can I not like someone like that!

Whew, I thought I was headed for the Garage Sale! I wrote this transliteration of I cor 13 because Linda who had it read at our vow taking didn't remember it so I figured if she didn't maybe others didn't as well - I didn't get all preachy, I just shared a poem that moves me.

Olivia: Don't forget I uncovered the truth behind knitting - I have been collecting crocetting and knitting pictures again, when I can find them, to do another post. Anything a friend of mind is interested in, I am interested in. Thank you for commenting, I appreciate it.

Shea: Yes, I said that because only because I know the Love of Linda do I believe in the Love of Christ. For some reason they considered that blasphemy - but the truth is, guys had not been particularly nice, while Linda did all what Jesus did, so I could understand Jesus because I saw Linda (she didn't walk on water, and she loves sleeping in a bit too much - so she is human!).

I also think that for many, certain people with disabilities will be as close to Jesus Christ as they are going to meet - and yet they pass them by. A face of God as you say. People who still in suffering reaches out to others, supplicates themselves for others; believe in others when they have given up believe in themselves. There were not two footprints on the beach in my life, but rather a wheelchair and a powerchair - and if I was carried, it was by many hands.

Cheryl: Yeah, that honestly is a bit of a curse ain't it! I have been blessed to have you as part of my family only vexed that I cannot come up to your work and put the fear of EFM into some people - THIS IS MY SISTER, do NOT make me have to return!

But also your silent and quiet generousity, for you and Linda are the postcard project, an open secret, yes, maybe my will forces us all on (oh that darn will!), but you are the hands, you are also amoung the silent and unseen ones who make it happen. Without you and others, there would be no project, and there would be just me, thrashing. You kept me going, when my body failed me, figured out ways to keep me safe, to keep me going.


Raccoon: yeah, I think in the same way, I get tired of friends or part of the circle dying. There is a circle of people I know, people who 'get it' and you are one of them and sometimes, I get so tired, one time it was two in one week. And I almost couldn't take it. Too many tears because the voices are gone, that communication which doesn't require pages and pages because people get it, and don't freak. I am tired of death.

Yanub: Thanks. Sara was no saint, nor am I (check the swearing!), but she reached out when I needed it. She explained all about prosthetics to me and resizing and stuff when I asked because I wanted to understand. She knew about the biological parts of being sick and managed to laugh; something I am still working on.

I am glad that I exploded into something productive. Something barely tangible, that is me all over (unless you have to carry me to bed!).

Thea: Sara was quiet recently, and I knew that if she was it was because she was tired, and needed her energy. Because she was a person who bursted full of energy, and HAD to blog and show people things.

Thanks, that is really important, I will remember that next time I want to react, and instead I will act in love. It is hard, but it is right, I think.

Baba Yaga said...

You are Beth. You are a shining many-coloured light. That's lousy as a eulogy, but - I'll remember you as *alive*. Alive, and giving, and mordantly funny, and aware, and true.

The death of a friend, of anyone who matters in one's heart, is always - irrecoverable. I'm sorry.

And btw - I had a postcard this morning; a girl with a parrot (you don't know how that tickled me) forging ahead into an undiscovered city. Always your cards make me smile - thank you.

FridaWrites said...

LOL, your cards are not headed for the garage sale! There's always one item I regret getting rid of at a garage sale though and I have to wonder what it will be this time. No, treasures will be packed away. The house sure is feeling organized.

Donna Lee said...

Elizabeth- Your latest post card is on my board at work so I can look at the flowers and smile.

I am so very glad I found you and have shared a minute part of your life. I read all the posts, even the hard ones and so often I have no words to comment. You give me things to think about and make me look at the people around me (many of whom are mentally/physically disabled) in new ways.

For that, I thank you. You are slowly making me a better social worker.

Lene Andersen said...

I'm so sorry your friend is gone. I'll miss Sara's voice. She made me think and laugh and helped me, too, to flip perspectives on things.

I will remember you as my sister-friend. We found each other late, but packed a lot of love into the time we had. I will remember that you always got back up and fought again, that you met hate with love and that you always did your best, never stopped challenging yourself.

I hope that when you die, you die reading manga after having spent the day feeding the squirrels and laughing with Linda and Cheryl. And (selfishly) having had a wee talk on the phone with me.

(and thank you for the nice words. Your disease is purgatory, but you are not it. You are my friend and nothing but light, even on the bad days)

Kate J said...

So sorry to hear about Sara.

I too have just lost a good friend,Mark, who I've known since 1972 and who died of cancer last week. Mark had a pretty tough life, lost his job as a skilled engineer because of his union activity, ended up as a street-sweeper, but never lost his sense of humour, his ability to see the best in people. He was someone I was always proud to know, who I kept in touch with even though we were far away and didn't get to meet up more than once every few years. He'd had serious heart trouble and had had to retire, but after treatment he was hopeful of enjoying some better health. I last saw him about 10 months ago, and last spoke to him just after Christmas, but he didn't say anything about cancer, so I guess it must have taken hold pretty quick. I'll miss him, he was one of the good guys.

So sorry to hear about Sara, I always enjoyed reading her posts. One of the good guys, too.

The Goldfish said...

Thanks for posting this today. I kind of felt numb and disconnected last night. I think Sara did a lot of the same things for you and I - not that we had exactly the same friendship with her, but I think you know what I mean.

Abi said...

I am so sorry to hear about Sara. Thank you for letting us know, though; I don't think that I would have found out for a long time otherwise.

I certainly won't forget you in a hurry!

I shall remember you as a good example. You are brave, compassionate and persistent. You encourage people to follow their dreams by showing them what you have done, and by communicating with them.

You know the importance of love, and spread it about like a virus. We have all been infected! Seriously, though, you plant seeds of love in the unlikeliest of people and show them that someone cares. Who knows what repercussions that will have? You will be remembered for giving everything to achieve this. This isn't really advisable, on a personal level, but you are showing us how it should be done, advisability be damned. What's the point of just doing things that are easy?

You will also be remembered for keeping your promises. Even when it hurts to do so, you do what you say you will do.

Your honesty can be unnerving at times (I am not accustomed to people just saying what they think all the time - sometimes people are more tactful, but less truthful), but it is good. I shall remember you as a friend with whom I know where I stand. It is good to be able to communicate openly. I shall also remember you as one who is rude to me in a very well-reasoned way, so that I cannot help but agree. If I knew more people who argued like you, my life would be more intellectually stimulating.

rachelcreative said...

Hi Elizabeth

Catching up on the last few days. Oh I wish I could take all the crap stuff away and leave you with the enjoying life parts.

Sorry to hear about Sara and the effect her passing has had/is having own your own thoughts and feelings.

I am feeling very clumsy with words but didn't want to pass without saying something. I will remember you as caring, passionate, determined, a force of nature, the fierce protector. Someone who has taught me so much. I'll do more than remember you - I'll pass on some of what I've learnt with you as I go through my life.

It's a shame those people didn't stick around to read on.

For now I'll focus on remembering you in life seeing as you're Not Dead Yet.

JaneB said...

My dear Elizabeth. I'm sorry for the loss - the loss to you of a friend who reached out when people were uncomfortably fidgeting and pretending not to notice what was going on, the loss to her family and loved ones of a special friend. Grief is mostly about those left behind, I often think - memorial services and funerals and gravestones and all the rest of it are made by the living for the living, to confirm that that person existed, to make a concrete enduring marker of all the little scattered pieces of the dead person which are in all their friends, acquaintances, even enemies, to give them something to do.

This was another great post - you know, you're right, your writing here changes as your cognitive function changes, but you are still writing powerful pieces which teach, and share, and touch the heart, which communicate at a very real and human level. Dispatches from a road where we all must travel one day, and must travel alone - or nearly alone, because people who can write like you, like all great poets, make cracks in the loneliness.

Eulogies? I will remember you as I know you, someone with the courage and will to be definantly, unfashionably herself, to love and to give again and again whatever the world does back, to extend herself beyond her limits regardless of where those limits are. Someone with passion, who wrestles demons and doesn't let them steal her voice. Someone who creates a real and lasting beauty with words, who sends dispatches, who learns and teaches and shares. Someone I care about, love, and am cared about and loved by. Someone who shames lies, and hypocracy, and convenience, and drags them into the light of day as proudly as a cat bringing home a dead bird, and faces any negative responses with the same affront, feisty charm and defiance that the cat uses to their human's squeals about bird parts on carpets.

The epitome of an academic, observing, recording and reflecting on what is actually there not some tidied up comfortable cosy simulacrum of reality, and doing it with compassion and growing wisdom, with no trace of arrogance or dispassionate detachment.

A very Christian, very human person, who affects all the lives she touches, and who I am blessed to know.

And I hope that none of that needs to be said for you for a long time to come, though I know that your 'long' is not as long as others', and that books and squirrels and loving friends fill your last days and mine.

Defying gravity said...

Hi Elizabeth

I'm sorry I haven't been commenting lately. Just wanted to let you know that I'm still here and still reading. XX

Dawn Allenbach said...

I'm more sorry than I can say about Sara's death. It's an immeasurable loss.

You are more than death, and you do more in any given day than die. You tell us everything that's real about you, and you don't sugar coat it. That's what I've ALWAYS loved about you.

I've been haing rough patch of my own, thus the silence of the last week or so. Please, never think that I've deserted you.