Wednesday, February 20, 2008

Because…..I want to live

In part, this blog is about what it is to be a person with a medical condition, a serious medical condition. So what about the times when it isn’t fun, it isn’t stable, it is beyond frustrating, it is beyond just lying down because you don’t even have control of that option? Monday started with trying to drink orange juice and falling down for a long time, 45 minutes? A hour? So no, no real energy to start the week.

Tuesday evening, I cried and cried for no reason at all. Not a dainty leaking of tears but a spontaneous and uncontrollable sobbing. I cried because I was so tired and I knew that wasn’t going to end. I didn’t ask for comfort, the tears came off and on for hours. It hurt to breath and when the time came to sleep, I couldn’t because each breath hurt, and with more and more sedation I lay there for an hour the bed elevated to keep the air passages open. I thought, “Why won’t they leave me alone, so I can die, but without all of this….this distraction.” But I said nothing. When you struggle and each breath hurts it is hard not to think about dying.

Wednesday morning, it still hurt to breathe, I was tired where I would have lain down and just stared at the wall if I did not need to get dressed for conduction testing. Try to remember to smile when you wheel past the neighbors, because I’m too tired to explain what this feels like; that inside my bones have turned the colour of ash. I am decay. But I don’t say anything. My heart is already erratic to the point that my body shakes and it is less than three hours from getting up.

I am asked if I am planning to go to the park, I say slowly that I can’t go that far by myself. Well, you should go to the park, I am told. I remind myself to smile. After testing, I sit and methodically go through and answer the comments on the blog, in case I am too weak later. It is a commitment I made and people matter.

I stare at the wall and wonder why I don’t fantasize about running or taking a trip or some aspect of my former life. I wonder why I don’t say no to doctors and how even though I don’t know how I will make it through tonight I will be making the two appointments I have for tomorrow, including the “Emergency GP” meeting which will mean I will have my afternoon sleep delayed.

Instead I think about why I haven’t sold off my collection of rare Victorian ghost story books. I think about talking to my neighbor downstairs about when they are away and getting Linda to help me move my classical double bass and bow so that I can practice and get up to a decent level before my hands give way entirely. I realize I won’t sell the books become somewhere inside, I haven’t accepted that it is over. And when I do sell them and think nothing of it, after the years of collecting them, then I will have held my mortality, and eaten it, so it is a part of me. I all think this while lying in bed, trying to sleep.

On the way to lying down I just risked falling down and heart pain because the toilet wasn’t flushing correctly. I pulled the lid open and after staring, fixed the problem by reattaching some rubber parts that were out of alignment. My fingers were dirty from the rubber and as this is the most “butch” thing I have done in years, I wonder as I wash my hands if I can call myself a ‘butch lesbian’ now, since I finally managed to fix something. I’m amused but too fatigued to smile, because there is no one here I have to force myself to smile for.

So now, awake again, as I stare out into the darkness, I am unable to remember if today was sunny, raining, or overcast. I can only remember that I must awaken tomorrow, must try to change my underwear before the home care for assisted showering arrives; and must leave early to wheel to the GP’s, then home to sleep. I need to sleep right away so I can wake to dress again to go to the dentist for an hour plus of cleaning and scaling. Then home to write the post for the day and put it online, at which point it will be midnight.

The dental scaling is the same reason I don’t say no, or just lie in bed, refusing to go to whichever weeks new “urgent” test or that “urgent” meeting. Because, I can’t, I won’t admit to myself that it is over, that there is no point in worrying about gum recession anymore. I cannot fantasize about another life because I don’t know what to fantasize about. It is THIS life that I want. I will cry again tonight because I am so tired, so worn down. But I will not change, not alter nor falter from what has been set before me.

I think back to friends who had chemotherapy and how sick it made them and how one it gave insomnia and pain for two to three days and just when they were caught up to the point of almost being sane, it was time to go again for another dose. And they cried and they lost hair and they kept going back for another dose when they were too tired to do or see anyone else. They wanted to live. And even though they didn’t know that the chemo would guarantee they would live, they would force themselves, still crying and shaking, if that is how it had to be, to be there for the next dose.

Someone who knows my history of needle phobia when they found out I had a second needle, completely un-sedated blurted, “How? That’s impossible for you.” How did I? How did I do something I had never done before not just once but twice for a test I still don’t know the value of? I did it because I want to live. And being asked to do one impossible thing after another with absolutely no promise of hope has become standard. I either must accept that my pain, and the anguish of these tests have no meaning at all or find a way to keep going. So then if I don’t die in the night, or trying to breath, or from heart problems then I will move an inch closer to something or someone who might say that however diminished or basic my life will become, I will live.

I continue not because of hope but because I refuse to abandon all hope. I know I am terminal, and I know that I still, in some way, must shelter a piece of me, a sliver which hopes otherwise. In Oncology, even when it becomes apparent that the Chemo is not “taking the patient to the brink and then bringing them back” that it IS killing them; the patients keep taking the doses. Too weak to be able to stop vomiting on themselves, they keep taking the doses.

I already have medical or disability appointments for the next two weeks. I keep fooling myself that I am still “searching for a job”, as if there was a job where you could take a majority of your time off in medical appointments, from day one. I have worked since November to find a job, to get regular care, to try and create a stable routine in which I can be secure. I have yet to experience it. I expect after my “Emergency” meeting tomorrow with the GP (and others?), I will have many more appointments, perhaps in other cities. And I expect I will go and do them too.

Today is a day I have a hard time picking up a can of drink and that is the day I start planning how to playing the double bass again? Maybe I am capable of fantasy. Or maybe, there are just so many parts of my life I haven’t faced, haven’t said goodbye to. Or maybe it is just part of accepting, wanting to play welsh songs in duet with Linda’s flute again, another memory to write before it is too late; before accepting it may be too late already.

I cry, I weep, I sob because it cannot be denied. But even still crying I go on, I continue and will continue because I am Elizabeth McClung, and while I live……I live.


cheryl g said...

I hereby declare you an honorary butch! Not many femmes I know will even attempt to fix a toilet...

I'm here for you and Linda sis... keep on keeping on.

Donimo said...

It's hard to articulate what I'm feeling right now, Elizabeth, but I'll try. I write this through tears. I'm crying because of all you go through and your struggle, for your deep fatigue and unease. I wish so dearly that things weren't ramping up like this with all the tests and doctors. It's hard to think about you wheeling yourself to these endless appointments. And what can we do out here in blogland? I hope that our caring for you somehow provides a small bit of strength to carry on.

What I deal with isn't terminal, so I'm limited in my understanding of that kind of grief. But in your writing, I hear echoes of my own bone weariness and incredulity that I am somehow going forward. Not because of hope, as you say, but because of not completely giving up on hope. Not because of wanting to live this way, but wanting to live and just living.

I wish a grief counselor could come to your home. Often. Maybe letting some of it out in your very honest writing helps a bit. I really feel like you've revealed so much here. Your struggle is known... and seen...

And while you live, you touch so many. Your words are so fucking alive.

Elizabeth McClung said...

Cheryl: wow, honorary Butch! I got dirty! That what I'm on, keeping on. Thanks

Domino: Thank you for your eloquent response. I felt today that I revealed, perhaps too much of how I feel, but then, I thought, 'Isn't that what this blog is about, what it is like?'

People do matter, very much so. Which is why I prioritize you and responding so highly. Because I want you to know that I understand how much YOU pay to come and read and comment in your fatigue and your conditions and lives. Linda is finally going to grief counselling this week, she too has looked at the double bass and wondered if we would ever play together again.

I just needed to figure out why it is I keep going, why don't I say no, why? And when I found the answer was, becuase I haven't accepted it yet, because while I don't have hope I refuse to give up on it appearing, I felt I had to tell; or at least where being dragged down and weary gives you a perspective which you must least for a while.

I hope that response made some sense. I believe I will move on from this and say goodbye to more of my life or maybe, hold on in some strange defiance. And I'll try to write well enough to capture that. Thanks again.

VK said...

You are the butchest lesbian I know and that includes the nice lady who fixes my car. :)

I wish I could say or do something to help. The best I can think of is:

You are still here. You matter to me. Reading your posts is sometimes the high point of my day. I don't comment often, partly for energy level reasons and partly because I cannot find the words I want to say, but I read everything you write and I think about you.

Wokita said...

Many hugs Elizabeth. You deserve them.

shiva said...

My God. I really, truly don't know what, if anything, i can say to you in response to these posts... but, you are a truly awesome writer, and i feel the need to say that. This needs to be in a book.

alphabitch said...

You make a really important point. Denial is sometimes a really practical, effective, and necessary coping tool. And in this case the right tool for the job.

I love you, girl.

em said...

For what it's worth, and i'm not butch, i think you should be given honorary status for your amazing honesty. Not many people have it in them to go to the emotional places that you are able to write about. I see you meeting your life on it's terms. That is rare. Ever since I have been reading you there has been your mantra that people matter. We do, we all do. I'm really grateful for you, grateful that you still have the strength to use your voice. I marvel at that strength.

cheryl g. said...

I am very glad to hear that Linda is now going to grief counseling... I worry about her well-being just as I worry about yours. You are both family, written into my heart.

Whether you say good-bye to parts of your life or hold on in defiance I believe you will do it with a grace that continues to amaze me.

elizabeth said...

I am sending you all manner of hugs right now. I am so sorry that is all I can do...


Lindsay said...

That was an amazing post. All I have to say is "Wow". I know you don't really like it when people are all "oh em geez, you are such an INSPIRATION!" But what can I say? I'm quite inspired by your strength and your determination to live your life.

I have a pen pal who was diagnosed with leukemia at the age of 12, and went through chemo and everything. She's now 15 and doing very well. One thing that really strikes me, that you described, is her detirmination to live. Not just live as in "survive as long as possible", but to experience everything. Although her condition isn't terminal (she has about an 80% chance of survival), you do remind me of her quite a bit.

I really, really enjoy writing your blog - I know you and your writings have had a very positive impact on my life.

tornwordo said...

Yeah, you're breaking my heart. I admire your willingness to put this out there. In a way we are all helpless and certainly mortal. Your story is a sobering reminder. Plus it's breaking my heart. (I felt that needed a second mention.) If someone told me I could have a million dollars or you could be cured, I'd cure you. (Embrace)

Gaina said...

There are some days when I want to say so much to you, that I just don't know how to comment appropriately - or even if you need comments at all, if just venting your frustration is enough.

So I will just say I am still here and still reading. x

Veralidaine said...

I also really don't know what to say... It's hard to read this sometimes but at the same time it's so beautiful there's no way I could stop. There's a book on my shelf about animal personalities, and in one chapter the author tells an anecdote about meeting a man whose cat was terminally ill. The comment that stuck with me from that was the man saying to her, "I hear my friends with children saying they want their pets to have a litter because they want their children to understand the miracle of birth. But I never hear anyone talk about the miracle of death."

Not to compare you to a cat (although I think we've already established that my cat lives a better 90% of humans in the world, myself included) but I think reading this blog has finally made that click with me. I'll be honest; I fear death, dying, and everything associated with it. I do NOT handle grief well. I am afraid of dead things and death so much that I will cross the street to avoid coming near a dead bug on the sidewalk. I won't swat mosquitoes because I don't want anything dead on me.

But really, there IS something a little bit miraculous about the experience of dying, and I understand it just a tiny bit when I read your blog. As much as I wish that I could give your autonomic failure to some serial rapist or pedophile priest and save you to share your writing with the world and explain to everyone why disability IS their problem, I see glimpses, sometimes, of something so much bigger than me. The fact that we live, and that we die, is something to be celebrated.

Death and dying are part of the human experience, and I think you experience life on a fundamentally different scale than I do because that feels closer for you. You could easily outlive me. I could be hit by a bus tomorrow. I could get bird flu or e coli or be gored by a deer (which kill more people each year than sharks). But my experience is not one where dying is real, and I have to think every day about the value of life and decide that I want to live. Although that WAS a decision I made daily after losing my godmother- I told you I don't deal with grief well.

Anyway, I don't know how much sense this makes to anyone reading it, but I think your writing opens a window that has never been opened to me before, and even though I wish I could close it and pull you back through the window into my "dying isn't something to think about for a good 40 years" world, it's still, in its way, part of the beauty of life.

kathz said...

You are so strong and your writing shows how very alive you are. You have a great deal to give to others through your writing and through your life. And you keep on because, as you say, you are Elizabeth McClung and you are alive. My thoughts are with you.

FridaWrites said...

My comments are inadequate to the pain and beauty in what you write--and what's understood/felt by my heart isn't so easily put into words. So I say you're strong and vivacious, but I mean so much more than that. I feel that your words, ideas will live on, even those on the blog. Don't give away Victorian ghost stories--sacrilege!

sarah said...

thanks for being so honest, elizabeth. it is very generous of you to share your life like this. i am sending you the best. your blog is something that Donimo and i share and that helps me know her better.

sly civilian said...

this was a really amazing piece to read...not because "thank goodness, the poor dear still wants to live" but because it's moving to see you think around questions of incredible meaning.

Elizabeth McClung said...

VK: That is very kind but I think that as butches go, I am probably Butch lite: none of the usefull skills and long hair too! Thank you for coming and reading and letting me know that. I understand the energy and the "what do I say?" issues, which is part of why I felt afterward, "Oh, don't show them that." But hey, wanting to live is part of life too.

Wokita: I'm not sure on the deserve, but I will gladly accept gifts, hugs amoung them (inner voice drill sgt. has very different ideas on "what I 'deserve')

Shiva: thanks, I really appreciate your feedback and will try to bring the book together, appreciate that the piece came together.

Alphabitch: Love you too. I don't know, I have people I know who are denying themselves out of experiences because they cannot face it, cannot move on - I don't want to be that, but as much as goths believe it, you cannot live for death. Life gives back something (sometimes something ugly and unpleasant) - while death, so far, not giving up much in way of secrets.

em: Thank you; I take the "honorary status" but please don't ask me to change your oil (Olive oil I can do!). Thank you for catching me when I took a risk and wrote this. There are things you aren't supposed to say or talk about, and when I do, I feel stripped, vulnerable. So thanks for catching me. Yes, people matter, always, even the ones who might, right now, do things that are a little not nice because they know no better (After all, was I not one of them too - I'm sure I was 12-15 at some stage).

Cheryl G: Me too, And we have three nights care this week which is good because we need it; both of us. As for Grace all I can this of is:

Patience is a Virtue
Virtue is a Grace
Grace is a naughty girl who wouldn't wash her face.

Oh wait...did that kill the mood?

Elizabeth McClung said...

Elizabeth: Thanks, I sorry for this but I am glad you stick around, not what we expected trading sex jokes and such upon first meeting. Thank you for being there for me.

Lindsay: Thanks, live long, do lots and leave people confused is my motto, well one or two out of three isn't bad. Ha ha. oh sorry, bad joke.

Childhood leukemia isn't exactly what I would call non-terminal, it is involuntary russian roulette at a young age. So yeah, I think she may have had to face that possibility, many times. Thanks for letting me know about my writing. If it is a "positive influence" then I must be doing something wrong - (Note: include more corset and goth content). Seriously, thank you, it does make a huge difference to me for you to tell me that.

Tornwordo: I'm sorry, I am not trying to break hearts or look for pity, just trying to share what is. Thank you, yes, mortality is around every corner, oddly - but my advice is take the money (as my rich brother said after I said, "well, doesn't matter if you are rich, we all have the same problems" - he said after a thoughtful pause, "No...not really, not when you are rich!" Thanks bro!). But I know the feeling, If I could take on MORE pain to cure someone, I would.

Gaina: Thanks, thanks thanks, thanks. I don't know myself - I guess I need to know I'm not alone.

Veralidaine: I don't try to make people sad, I have no desire for that. But I wanted to know why I kept going, and this was my answer. And I think it is a common answer in infinate variations. The miracle of decline?

As they say, dying is simple, it is the parts up to it that are hard. I have to say that being sick, being terminal, the pain, the facing things about myself I didn't want to face, prioritizing my life, reflecting on who I was, are gifts; hard gifts but gifts all the same. If they found by accident tommorrow that this pill is all good, I would be grateful the rest of my life for this time. I don't think there will be a pill. And (in case you missed the title) I want to live. And I will, for as long as wide as possible. THank you for sharing your thoughts with me. Thank you for reading though it is hard.

Kathz: Well, I think we have established that I am a wee of an egomaniac in that it is not "I will live" but "I am Elizabeth McClung and I will live (cause this is MY movie! Till it ends). Thank you. Just because I might be down 14-2 on direct elimination doesn't mean this next point doesn't matter. If you know what I mean.

Frida: Linda too says that if I gave away or sold the victoria books it would be like somehow I wasn't the same person anymore, that I need to hold onto them, so she can hold onto me, the same me. If THAT makes any sense. I don't quite see myself as strong OR vivatious but have learned that people say GOOD things, just shut up and smile (when they say bad things, then you talk!).

Sarah: Thank you - it really is the wonder of the internet that other's blogs have helped me and Linda understand our situation better and if this helps with that, then I am glad I publish and will keep on posting. Because writng and people matter (need the latter to make the former matter).

Sly Civilian: I what with the what did the thinking of what? No seriously, thanks, I just have more time when lying or waiting or staring at medical equipment and well, "Why" pops up quite a lot - from "Why me" to "Why keep going" or "Why did they just make a joke about radiation and I laughed?" I don't know the answers and I suspect I am lying a bit even to myself, but will keep trying.

Michael said...

I don't read blogs. I have too many friends that have blogs -- trying to keep up with them would completely fill my days.

Yet, I read yours.

I've never met you; I probably never will. But almost everything of yours that I've read here strikes something inside of me, deep inside.

A counselor of some sort would probably be very good, although that would be *another* appointment that you would have to go out for...

Death doesn't frighten me. I met her almost 11 years ago; she was the most beautiful woman that I've ever seen. Living scares me. But, I realized long ago that letting my fears control me would stop me from doing what I wanted to do.

so I don't let them.


Neil said...

Very well spoken, Michael. Thanks for saying so eloquently what I'd like to.

Beth, it pleases me to think that there's a reason that we are the way we are. Sometimes it seems like it may be a seriously sick and twisted reason; but there is a reason. And there must be a reason you have to deal with all the pain, appointments and crap that "caregivers" are dumping on you. There HAS to be a reason you're forced into guinea pig mode for the doctors.

If we could only figure out what that reason is, your current so-called life would make more sense. But it is not given to us to understand. Thus, I will send positive thoughts for you manymany times each day, I will l will wish for you a good night's sleep, and the best day possible, and I'll try to send mental energy and strength for you.

And I shall continue to send zen hugs for as long as you want them.

I'm sure your writing will make a difference, O honorary butch niece. You're wonderful, Beth. Linda, please give her a real hug from me.

yanub said...

I'm going to play the bad little devil on your shoulder. Maybe, just maybe, you will live just as long and have just as nice gums without the dental work. Skip it and take a nap with Linda instead. Listen to your bad little devil! Naps are bonus! Teeth cleanings are boo! Yay naps! Boo dentist! If you work up a really bad case of stink breath, you can fell Fran with one blow. Think of the possibilities.

Enough with being silly from me (guess who avoids the dentist unless there is horrible pain or she can't eat. I'm not dentist-phobic. I'm "don't want my jaw-dislocated-again-phobic"). I don't know you to tell you one thing or the other about how you should spend your days. But I am glad that however you spend them, you have Linda to spend them with. And I am glad you want to live, and appreciate so much that you take the time to engage with even a newcomer to your blog.

Elizabeth McClung said...

Michael/Raccoon - Thank you for the high compliment, of reading my blog; as I do feel an odd connection to you (though I know you only through your comments - thanks for airmed by the way - true livesaver!). See, now I am kind of wanting to meet death but I know what you mean about living, and sometimes the fear of that, of facing that is petrifying in fear. Particularly in the quiet spaces. And while I suppose I should say there is much in the world that needs to be done, the truth is, I want to smile a lot more in my time of living, and it looks like I will need to fight for that. Thanks.

Neil: I have no fear about a reason, I just don't neccessarily need to know it (don't tell me!). Thanks for the positive thoughts and please send some to my night care giver who is in for a hell of a night. I will pass the message to Linda (who always seems happy to oblige), thanks, are you the kind of uncle who spoils? I vow to try and make the writing matter - to aim higher. No manipulation, just more risk, more exposure.

Yanub: Oops, too late, good advice though but I am the type to eat the broccoli and leave the steak till last - only in my life right now it seems there is a lot of broccoli (meaning I do the hard, so that I can enjoy the good times...if they ever arrive) - I did tell the dental hygenist that I hadn't brushed for two weeks so she wouldn't think I was trying to impress her (I brush 4 times a day, so a bit of a laugh).

Please, tell me how to spend my days, as a person who has invested your time in sharing my story, I value your opinion; I WANT your opinion (as in you care enough to read, you seem to care about me, why would I turn that away?). I like engaging with you yanub, I think your blog title is brilliant by the way (like not clever but actually brilliant as in so good you should sell it to some major author who isn't so brillant so they can look as smart as you are). I too am very grateful for Linda, even when she kidnaps me (see the new post).

yanub said...

Dang! I should have taken that sleeping pill tonight instead of last night. I could have saved you a trip to the dentist's. I just can't seem to arrange my insomnia conveniently. Bother.

Thanks for the compliment about my blog. I think of it as rather random. Sometimes, it is shiny and interests me for weeks on end. Other times, something else is shiny. Yes, that's it. It can't be that I ever run out of ideas.

Dawn Allenbach said...

There are days where you just wonder if it's really worth it -- the weakness, the not being able to make your own damn dinner, the sitting and waiting for someone to come and put you on the motherfucking toilet.

But you are strong. You want to know how I know your strong? Because you're still here. For all your exhaustion and ridiculously stressful appointments and stupid apartment managers and shaking and needing oxygen -- you're still here. You haven't ODed on opiates or pushed youself down the stairs or in front of a big truck.

You're still here, and there's a lot to be said for that. There's not a damn thing wrong with wanting to play your bass while you still can or getting fresh with Linda. In fact, why the hell are you sitting there blogging? :-)

I love you.

Elizabeth McClung said...

"the weakness, the not being able to make your own damn dinner, the sitting and waiting for someone to come and put you on the motherfucking toilet." - yeah, I can related to this, especially the swearing part, since the times when I need help the most, the most run down and helpless, the more frusting it becomes.

Well, I don't think I am strong, but since you aren't exactly one to sugarcoat it and either we have similar imaginations or you have had some similar thoughts (or you just imagine me VERY well) - then yeah, I don't, I think about it but I don't becuase though I know I will get weaker and will hurt more and breathing will get harder and I will need more and more medical interventions - It is scary because it is unkown, and further into dependancy and helplessness but I believe it will be bearable and something (I hope) far better than that, eh?

I love you too - but how can you be so honest? I guess your comment for me was like, "Why did I spend all those words on a post when she did it in a couple short paragraphs?"

Dawn Allenbach said...

I can be so honest with you because I know you can understand. I'm a no-nonsense kinda broad and so are you, so what's the sense in bull-shitting each other? We have to put on saccharine-sweet faces for your neighbors and my colleagues, but it's stupid for us to do it with each other. That's the beauty of us being friends. I don't know about you, but I have very, very few people with whom I can be strictly myself -- good days and shit days. I don't have NEARLY the pain and respiratory issues you do, but my brother did (he was alernating diloted and percocet every two hours his last couple of months, and he spent a majority of his time on oxygen) and I hurt for what he was going through. He was sick and in pain, and I couldn't help. I saw what it did to him mentally, so it's not all that difficult for me to imagine what it does to you.

And what does it matter if it takes 100 words or 1000 words to express your feelings? I know for a fact that I don't let my true feelings out nearly enough. I should take lessons from you in that respect.