Thursday, November 29, 2007

An essay: So what is it like day to day being diagnosed “terminal?”

I am feeling relatively pain free (thank you God for all the flowers of the field, and in particular, the POPPY!), and though I had an “episode” today in public (actually two), I am feeling pretty upbeat. So today seems a good day to talk about dying, or rather what is it like having the “you’re dying” label.

First thing I want to point out is that EVERYONE is playing on “Team Terminal.” The difference between you and me is that you don’t have to think about it, it is far away and by that time they will have created robot bodies for your head to be attached to. I on the other hand took the spooky turn and am on the winding road that is full of fog and has signs like “Terminal City Ahead: End of the Road.” So while YOU could be run over by a bus tomorrow, it doesn’t worry you at night because there isn’t this little voice in the background saying “You’re going to die!” (unless you are a goth, of course). But that is actually just the first month or so. Then the whole, “I’m going to die” moves down the scale to simply fit in with all the other things that define you and it rests between, “I am left handed” and “Why am I so addicted to anime and manga?” The “maybe if I stay frozen like a deer maybe death won’t see me and run me over” moment is gone and life is still there. You find that you are able to get depressed over entirely OTHER issues, like “Why are there SO many crap reality shows?” and “Why does it rain all the time?” and “It’s barely winter and I’m already sick of soup.”

Indeed, the whole, “yeah, I’m terminal” would love to slip into the subconscious or be happily denied if I could only get, say, two days of feeling normal. I have a whole bag full of denial I haven’t been able to open yet. But once a week or so there is an “event”: a feeling really shitty, a so much in pain, a feeling of my heart being squeezed out for juice (for an hour!), some crappy night or terrifying incident. And that is when that fog on the road to Terminal City blows away for a moment and you see the twinkle of lights ahead. And you think, “Is this it.” Because all I need is to not be able to breathe for four minutes and that’s it. And sometimes, when I am having one attack after another and it has been going on for an hour or more and I can’t move, I can’t speak, I can hardly breath and the pain is mind-blowing, I try to stop breathing. Honestly, more than once, let’s say MANY times I have sought out the darkness of oblivion, not knowing if it was to be unconsciousness or death; I wanted, no, I LUSTED for the darkness, to simply be out of the overbearing HERE. But Linda or home care or a health professional always brought me back. It is hard to seek out the darkness, when you hear Linda saying, “I’m here sweetie, just breathe, just breathe.” Oh crap, I guess love wins again!

There is the personal side and the social side meaning, what goes on inside your head versus how other people handle things. It seems that the more integrated my diagnosis and I become, the more difficulty people have with my being terminal. When you go around in a wheelchair, have oxygen, pass out, go into spasms, and get laid on floors on a regular basis (twice so far today!) people want to know what is up. You can’t exactly be reenacting Beaches or some 90’s AIDS film where plug on heroic and act normal until you throw a party to tell all your friends. I mean you just drooled all over the floor of the coffee shop, you kinda have to tell the staff something! And besides, I don’t like lying, I find the best way to be an open, honest, friendly person with a sick sense of humor is to be just that. So yeah, sorry about spazzing on your floor, I’ve got an autonomic dysfunction, it makes my heart, and lungs, and BP, and other stuff go crazy at random times.

The questions you get are so standard I sort of want to make a card: (they want to know what it is and when you will get better. You can AVOID the subject of ‘getting better’ for five or six questions as they hammer away at you, but why?) So yes, it is terminal. No, I’m not getting medicine to cure it because there isn’t any. No, I haven’t given up hope. No, I actually spend my time trying NOT to think positively, as I find it depresses me (that sometimes confuses them enough to go away). Yes, I’ve tried acupressure; because of my condition it tears my muscles. No, let me explain again, there IS NO CURE; not in the States, not in Europe, no cure. Yes, I’m sure they will find a cure soon except all the research studies currently being done are to find out how quickly people like me die. I DO live life to the fullest, what do you think I was doing drooling on your floor? No, honestly, there is no medicine, there is no cure. No, radiation doesn’t help. Yes, I take vitamin C. Yes, I know I don’t look sick, and hopefully I won’t; right up until my heart explodes. No, even if I do exercises, I can’t get out of the wheelchair. Yes, I’m sure they are very good exercises.

The thing is that until people SEE you doing the funky chicken, they have a really hard time mentally accepting me as sick. They can understand I might have some nerve damage or something but if I were terminal then I would look all wasting and have lesions on my face (these ideas from the people who have seen too many AIDS specials). AFTER they see me do the funky chicken, the first words out of their mouth each time they see me is either: “You are looking good/looking better today.” Or “Have you heard anything else from your doctors?” I mean, they’ve seen me doing the funky chicken, they KNOW now that I have something weird and WRONG, but geez, they put a man on the moon and now we have tennis shoes that can be MP3 players, surely “they” must be able to fix what I have. This puts me in the horrid position of either being a wet blanket and saying “No, actually, I’m losing limb function” or “Nope, still dying, thanks!” or the emotional burden of ‘cheering them up’ falls on me, so I hedge with “Pretty good day.” Or “Some good days, some bad days.” Or “Well, I’ve got a few more tests coming up, let’s wait and see what they say.” But I feel that with the limited energy I have, I don’t want to spend it cheering up people who are depressed because they don’t want to believe I am terminal. WAKE UP! We’re ALL terminal, mine just has a name, okay!

What do I want? I want people I can tell the truth to, I want people I can tell what really happened last night or yesterday and try to make a joke out of it and they won’t get sad looking and quiet. Yeah, bad and painful stuff happens to me; bad and painful stuff happens all over the world. But here I am buying my coffee; and I’ll probably be here once a week buying my coffee for months or years; so lighten up.

As for me, no, it doesn’t sink in all at once. I would like to have ONE long remission, at least three days or a week where I DON’T get slightly worse (I asked Linda, she can’t remember a week of not getting worse). How about a month? That would cheer me up immensely. But other than that, I have these odd bits. I am not going to download episodes of the TV show Bones because it is cheaper to wait until next summer when the DVD box set comes out. “What if you aren’t healthy enough to watch it next summer?” a little voice asks. Ignore the voice. I look at my thousands of books, several hundred so rare I bought them so I could write research papers on them and have an academic career. I haven’t even read them. I’ll get around to it when I’m not blogging. No, I’m not selling them, I’ve got my whole life to read those thousand books..........oh.........oh shit. Well, I don’t care, I’m not selling them anyway! They’re mine!

I was having some pain and problems sleeping and Linda was holding my hand. I told her, “I know it seems odd the way I almost defend MSA, how I shut people down who suggest it might be something else.”

She murmured assent.

“The truth is,” I said and my voice started to quiver as it does when you are in the dark, at night and in pain, “that I don’t want to die so much, but I can’t live like this for 20 years. I can’t, I just can’t.” She gave my hand a squeeze. I continued, “The pack of pain pills the doctor gave me, six months ago it would have lasted two months; it’s lasted less than two weeks. What is it going to look like next year?”

“Go to sleep” she told me. “Think about other things.”

But I can’t. Sometimes, particularly after a bad attack or a long one, or a series of painful days where I sit helpless waiting to be carried, I ask every home care worker. “You’ve treated people for 10 years, tell me, what will things be like in six months?” They all say the same. They’ve never seen anyone with as many symptoms simultaneously as me. Sigh. I feel like Emma Thompson in the film Stranger Than Fiction – I want to go visit hospitals, peering in peoples faces, looking for some, I dunno, some spark of recognition, someone who can tell me what happens next. I also see myself, like Emma Thompson getting thrown out of the hospital for the same statement, “No, no, no, these people are sick, they aren’t dying, where are the dying people, I need to see the dying people.”

I went to a group that has access to funding from the Federal Opportunity Fund; for people with disabilities to get back into the workplace. They give you a “coach”, they give you adaptive equipment like voice typing computers, and they will send you to school for up to two years. They only get the big pay-off from the government when you get a job. Therefore I trust them – they don’t have time for endless meetings. Neither do I. The orientation meeting jammed 12 people in a small meeting room. I lasted 22 minutes before passing out (it was HOT, do the freaking math, this is a group for PWD and you don’t think of heat intolerance?).

I got a one to one with a “private coach” and signed up. She saw maybe the agency plugging my writing to different places where I could work from home. I said that was attractive but that also, I wanted to go to school. I wanted to be around people. That yes, I have education, I have six degrees but what I don’t have is time, and interaction. I want to do something that makes me excited around people that are also excited. And anything beyond that is gravy. What I don’t accept, and what the people who knew and know me don’t accept is that the life I spent years and decades creating; the academic oriented life is gone. I still can’t think about NEVER standing on a fencing strip again without misting up. Okay, that idea of what my future was going to be is gone, but I’m not gone. Send me to art school. Send me to teach high school kids creative writing. Send me somewhere to do something that I can care about and with people I can care about and who care about me. I want to stop at every roadside attraction on the way to Terminal City.

But for the 12 hours I am awake each day; it is mostly mundane. Get up, read and comment on the blog comments, get dressed, try to explain the concept of “String cheese” to a non-english speaking home care worker, drink Gatorade, take a nap, try to get up from the nap, bang on wall for help. Then do something with Linda that isn’t about work, money, my family, her family, a fight or other crap. Tell her my crazy plan of the day; see what she thinks. Watch something together if it is a good day. Plan to go out on the weekend. Be put in THE CHAIR in front of the computer. Linda wraps my feet with a blanket. She remembers I am supposed to take out my contacts while I still have finger function. Edit the blog for today (or start writing it). Watch some US TV – decide that I still have WAY too many brain cells left for The Ghost Whisperer to be an interesting show (EVERY EPISODE IS THE SAME!). Write an email. Take more pills. Go to bed. Wonder if I will ever get to meet any of the people who read my blog. Wonder if I have a medical appointment tomorrow. The day is done.


Lisa Harney said...

This is a great post. I mean, it's so mundane, while the title implies something more sensational, and that's a good thing.

It's easy to read your posts and either miss how often the bad stuff happens or overestimate it. I admit, I don't have a good sense of the balance of such things.

So, have you communicated the concept of string cheese to your staff?

elizabeth said...

I love the way you write. It is so honest. Though - I guess there really shouldn't be any other way.

I hope I get to meet you, you know. I want to go feed squirrels with you and Linda. (Then we can trap them and dress them up in little oufits and then release them again. Just to mess with people...)

And if while I'm with you, you start drooling on the coffee shop floor - I will too. I have this need to fit in. ;-)

I also bought a hairband with skulls on it the other day and it made me think of you and smile.

Here's hoping that today is a good day, or that there are some moments in the middle that are...

saraarts said...

"I DO live life to the fullest, what do you think I was doing drooling on your floor?"

Seriously! How many people ever actually do that? You know that lots of people think about doing it, maybe even dream of doing it, but you are one of few who can say they've actually done it! ;)

So here's yet another obnoxious question from the ignorant ass who is my pollyanna self: Have you considered tutoring? I mean you tutoring other people? And have these worker placement people thought about it? I know it's not the same as teaching in a classroom, but it is exposure to the outside world, and you could do it in a public setting, too. Perhaps you could tutor/teach privately one or more motivated students at a time in one of those topics which is hard for "normal" people but easy for your giant brain?

I don't know. It's like the coaching idea though.

Meanwhile, I think you are only interested in art school now that you know it can involve fire. ;)

Elizabeth McClung said...

Lisa: well, dying is mundane, people who've never even practiced do it without a hitch. It is just the awareness of your own upcoming backflip into the unknown which makes it different. That pile of DVD's sets you were keeping to watch "someday" you now think, "Maybe I'll just run out of time." It is odd how much of our lives we put off, we leave in anticipation.

Re cheese string: most of my regulars have figured it out by now, new people, not so easy.

Elizabeth: Thanks - I think becoming a squirrel Fagan and teaching squirrels to steal small change and bring it to me is more my speed.

haha- I would love it if lots of people started drooling on the floor because it was "popular" though admittedly, I don't have that great a view of what is going on around me at the time.

Woo hoo - skull headband, you have already taken your first steps, a few more corsets and your journey to the dark side will be complete (you have to insert the wierd raspy voice and breathing in your head)

Sara: You know people who dream about drooling on the floor of their coffee house? Really? See, standing in traffic offering myself sexually - I admitted that was a fantasy, but drooling on the floor, nope, never really had a strong pull towards that.

I have done essay tutoring in the past but I find the people I teach have an odd idea of tutoring (like: so you're going to write my essay or tell me what to write....). I like the idea of maybe a small study group. I have done a bit of one to one in English but find myself actually speechless when someone says, "I don't get the first sentence" and I say, "It says, 'They left the wrecked plane and looked around the beach, there was no one in sight.'"

Student: "Yeah, I don't get what that means."

Me (in my head): "How can you not "get it" they left a plane no one was is sight, what exactly am I suppose to explain? Do I make a paper airplane and then crash it and make little people walk out? Are we going to do this for all 288 pages of the book?"

Art School: I used to draw actually, mostly hands and other body parts coming out of the ground, and trees, and puzzle pieces. Maybe I should just do something that I am mediocre in but have fun doing with other people who are mediocre - stop with all the need for perfection.

Lisa Harney said...

Yeah, the one time that I was anywhere near death (when giving plasma, always make sure they mix your blood with plasma before letting them stick the needle in), I was thinking more about what I hadn't done than what I had. And also why that stupid woman three feet away from me on the other side of a locked glass door refused to call 911 when I was collapsing right there.

The same thing happened when I was having my panic attacks and thought I was going to die - I kept worrying about everything I wanted to do, but never had the chance, or that I'd put off.

And yes, the awareness of imminent mortality really is different - even if my awareness was not based in real true imminent mortality. It did alter how I think about or worry about death.

YummY! said...

"The thing is that until people SEE you doing the funky chicken, they have a really hard time mentally accepting me as sick."

That is so very true.

My best friend died 5 years ago at the ripe old age of 23.

She had bad kidneys. She needed a transplant that she never got.

Even after she had tubes permanently in her for her dialysis treatments, even after she started LOOKING sick for the first time, I never occurred to me that she wasn't going to get better. That she was, in fact, going to die.

Surely she knew it, but she never talked about it, never cried to me about it, she just was like she always was.

As for me, I think I was just in denial.

Tom P. said...

I wish my Elizabeth could work with you. I think the two of you would get along great because you are so much alike. She is so into the goth and anime thing (she is in the anime club at her high school) and creative writing is her favorite class. Her teacher told us that she is one of the very few students she has had who actually has talent as a writer. Beth's last two short stories were named, "Slasher" and "Haunted".

This is the poster hanging in Beth's room:
Lenore with Mother

As far as being terminal, as my wife always says, none of us get out this alive.

Elizabeth McClung said...

Lisa: Well, thanks for the plasma tip, but now I am curious about you locked in this room and plasma and a near death experience (the rest of the story?). I guess I still do a lot of the "what I haven't done" cause hey, reflecting on what I HAVE done, isn't that just gloating? Seems an odd way to face your mortality - woo hoo! Look at what I did!

As for panic attacks and near death experiences. Personally I think that experience which makes you view your own mortality can be a valuable perspective (just one society seem VERY uncomfortable talking about) - and I think that is true whether you end up taking the turn off which has big blinking letter "The End" or not - I mean, if you are going to the hospital with chest pains and thinking, "I never told XXX I love them, I never did ......" - I think that is valuable info. And since some EMT's were SURE some of my hospital trips were Panic Attacks - and I might have bought that for a while, whoops turned out they were wrong.

Yummy: thanks for sharing that difficult story. I had a friend who died of stomach cancer at 26. It turned a lot of his friends athiest. I think now that I am on 'this' side, I have a hard time sometimes remembering what the other side looks like, I just how people react, I don't know what they really think or feel. I am sure that some think that talking about stuff like this is inappropriate; but that's just not me. 23 is young. That sucks. Actually now that I remember, I had a friend who was dying at 17; he never cried, he just was (his parents, wow did they cry). He would go in for another heart transplant and I'd go in and make him laugh until his chest spotted from broken stitches (oops!). I think I knew he was dying, I think he knew we just didn't really know what that meant (any more than what being "adults" meant besides being able to drink).

Tom P: Sign her up, I bet we could have some fun checking out each others goth/loli/anime loot. As for your wives statement, well, that's only a THEORY - one I am only accepting as such until I pass the finishing line.

Lisa Harney said...

I wasn't in a locked room. I'd donated plasma, taken the bus to this nice shopping-type neighborhood, almost missed my next bus because it was early and ran to catch it. Only, I shouldn't have run, because I hadn't replaced all the fluids, so my heart was very close to stopping or stopped, I'm not sure. I managed to get to the nearest door, which was for a realty office, was locked, and had no handle. I saw a woman inside, and knocked, and yelled for her to call 911 even as my legs turned to rubber and I started to black out. She just refused and argued with me while I was saying "I can't catch my breath, I think my heart's stopping!" and finally, when I was actually laying next to the door and on the verge of blacking out, my heart just started beating again and everything was back to normal. There was an ER six blocks away and they said I seemed fine.

I'm not 100% clear on what my heart was or was not doing because of the intense dizziness and blacking out and the sense of trying to gasp for air while taking full lungfuls. I guess it wasn't unlike drowning. Anyway, after that experience, I wrote a story about someone who dies and doesn't realize it, wandering around as a ghost.

As for donating plasma, they a lot of blood, separate the plasma out, and return the red blood cells plus a saline solution. This plasma center had switched to a system with a centrifuge next to every bed, so it'd automatically withdraw the blood, separate it, and return the red cells. They didn't include saline solution, but considering that slight overexertion can cause life-threatening side effects, they went back to adding the saline fairly soon thereafter.

Mostly, I am still amazed that anyone thought not restoring full blood volume made any sense. I hope no one actually died.

And that's exactly it - even though I didn't have a fatal condition, I did think about things that I hadn't really thought about before.

It's interesting to me that the stereotype is "your life flashes before your eyes" but the truth (for me) was the exact opposite.

Also, the thought of dying really doesn't bother me as much as it did before.

lilwatchergirl said...

I feel that with the limited energy I have, I don’t want to spend it cheering up people who are depressed because they don’t want to believe I am terminal. WAKE UP! We’re ALL terminal, mine just has a name, okay!

I hope it's not horribly insensitive that I can identify with a lot of this point. For people who ask STUPID QUESTIONS and make STUPID COMMENTS, I think 'incurable' and 'terminal' mean much the same thing: a chance to be STUPID... I've had so many of the comments you have, and thought some of the same things. Including, sometimes, that stopping breathing would just be easier than more pain and less function.

Thank you for writing so honestly. More people should.

P.S. My girlfriend reads your blog and wishes she could meet you. She won't ever comment here because she's like that. But she does. (I would also like to meet you, of course. But I thought you might like to know that two girls you've never met talk about your writing and your Plan and your squirrels and keep saying we should buy your book and wonder if you're doing OK. Hope that isn't too freaky.)

Elizabeth McClung said...

Lisa: thanks for explaining the story. After a lot of talking about this with Linda, yes the dying moments are bad, but it is the living which is worse; the constant limitations and the sure knowledge or more to come, the little details of what type of hospital bed mattress to get (coated for the incontenence of course, memory foam for when you can't move...). It is like having someone to come break a bone every day, and yeah, you've eventually die, but geez, there are a LOT of bones first.

lilwatchergirl: Actually that happened to be just the right thing to say at just the right time. And I think you are right, this is more a viewpoint of being "incurable" or "degenerative" as much as it is being "terminal" - I mean, last night Linda said that she was terrified and helpless as I had been laid on the ground because I was moaning and screaming from the pain in my chest which only went on for several minutes and the look, my pallor, the pain etched into me. That was her point of view - for me, it wasn't even really that memorable, I remember I had an "incident", I came home and I had so much pain for the next 8 hours, pain waking me from sleeping. You know, just another chronic condition day. I'm glad you like that I spew it all up, I mean write honestly - I don't have a support group, I don't have a lot of human interaction and I guess while I want to leave a record for someone coming after me in the same situation, I want to matter somewhere, just a little bit, even if it is only over toast. :)

tornwordo said...

A job writing from home? That would be perfect currently. And I wonder what the proper protocol is for helplessness. I think that's what everyone struggles with as we are allowed to glimpse your life.

Anonymous said...

I like what Torn wrote. I adore your writing, I find myself wanting to move next door and just be there to help, not that I could actually do anything useful, but it seems like the more people are around, the easier some part of it might be. And then I feel like an idiot because there is not a thing I can do or say that isn't well meaning and lame.


signed, your well meaning and lame friend from California (em).

Elizabeth McClung said...

Tornwordo: I just appreciate that you are willing to follow me on the twisty little road I write, I know it is hard to live it and I know it is harder to be passively viewing it - but thanks for commenting - Once I get all the answers/Solutions, I will definately let you know.

Em/Anon: not lame, just sharing the experience with me or letting me know helps. And I really don't know what is so wrong with well meaning - just let me have bad things happen and tell you and then say how you feel, that's cool. And then I can tell you when good things happen too. Is that okay? Because I would like that.