Tuesday, February 16, 2010

I did not choose this disease, but it is mine.

This has been the weekend that felt like a gut hit: when you found your school had been turned into an hair-gel warehouse, and your family home is now a set for TV ‘comedy of slum dwellers’ pulling in 26 million viewers. And they haven’t even taken down your posters or your ‘third place pretty miss junior high’ award from the wall. It wasn’t pretty. Linda is sick. I got a fever and wrote the last postcards to post on the floor after I fell over and was too weak to get up (don’t even remember what I wrote so if you get some scrawl, you know what happened).

The Specialist, my last hope for treatment said he WOULD have helped us if only we had seen him 18 months ago….except we did see him 18 months ago….and then he wouldn’t help us. ‘Not my inch’ I went in INDY. Specialist actually said, “Well, you know there is no treatment for your condition…” Well, not the autonomic part. I passed out tonight because my heart stopped. It now has an evening habit, if I breathe, it stops, as I don’t have the strength to breath and have my heart beat at the same time. It is surreal, watching it on ‘the big screen’ I call my heart monitor now – “oh, it’s stopped!” Linda says, while I clutch my chest, old news to me.

Friday Linda and I spent seven to eight hours because with she is the primary care giver and sometimes it is hard not to hate the disease, and also hard not to fuse the disease and the person. It is hard not to feel, when any forgetting causes others pain, that you are failing. I am failing because I cannot remember three days ago, she is failing because the medicine isn’t here, etc.

I decided that I am not actually responsible for getting this disease. I did not buy it, or test drive it, or pick it out at a factory. I can’t remember things. If a person makes a snide or pointed remark about that, then that is their problem, and they need to go somewhere and solve it, like therapy.

I did not know if Linda was going to build walls in her heart, if this was as far as she went or not. It feels to both of us like the big descent. The top of the roller-coaster where there seems no bottom as the car keeps turning further and further towards the ground and then you start to drop. For me, there is no ‘chicken line’ for getting out, there is no closing the eyes, there is only what I call ‘The Fire’ and that is all. And few if any will go the distance, and I know that. It hurts, to be alone, to know the isolation will get worse, but people don't want to see what it looks like when all falls down.

We talked, and expressed fears, and anger, and irritation and I am trying to create multiple weekly respites for Linda, I am going to try to be more positive. She is going to make a place where I can feel safe. And I am not going into a Care Home. Because there is a fantasy that if I go to Home that we can spent the time together as ‘quality time’. Except the same paid people who don’t care for me here will be caring for me there, and for me there is only one thing keeping me going: Survival. And survival in a Care Home would be doing what it takes, and that isn’t sitting on the porch in case Linda drops by so we can have quality time. And what is that? Talk about five years ago when I remembered things.

This IS the time. If we want quality time or better quality, we have ourselves to find it. This, right now, might be as good as it gets. The people who are here, like Linda, get so used to me in pain, and so tired, very tired, that me in pain has no meaning. Linda would run to help someone who twisted an ankle but after several hundred nights of tears running down the sides of my face, or moans, I am just a lump that stops sleep. That is what it is sometimes. Hopefully not all the time.

“The Fire”? It takes you to the limit of what can be survived, both as a human being living it, or someone watching it. And that is FAR beyond what can be stood. What can be borne. At some point you have to turn away, if only a bit, to shield yourself. There is something for each of us that we can’t stand to watch. For most care workers it is ME, in a level 2 seizure (a level 6 would rip muscles, leave bruises, or internal bleeding). And knowing that EVERY single thing will get worse, will stop working, or hurt more, whether it is simple as swallowing (3 days or an IV), or new ways of pain. And there are so many types of pain. At some point, the eyes and heart need a break. For those who care.

Except for me. I am strapped in and will ride the whole way. If I want to survive, not just as a body in a bed, but as Elizabeth, as I AM then I must always turn to face the fire. No matter how hard or impossible, I HAVE to do it.

In the Bible, Daniel , three of his friends are to be thrown into a fire so hot that it kills people who even approach it. It is made because the king made a gold image of himself and only three would not worship the king every time he felt like it. Shadrack, an ex-prince of Israel, tied like cordwood faced Nebuchadnezzar and told him that even if their god did not save them, it changed nothing, and they would not worship him. The king in a rage had them thrown into the fire, so hot that the soldiers which threw them in fell down dead.

Weird story right? But for me, it means so much because Shadrack said he COULD be saved, but did not expect it. Nor did how he feel change, or how he choose change regardless. He would not do whatever someone who bullied and threatened wanted.

I never wanted to have Autoimmune Disease Autonomic Failure and Peripherial Neuropathy with a Seizure disorder. I didn’t ask for it. And yet, unless there was a way to stop or cure it, I would not give it up. There is no way I would ask for another to carry this, if giving it up meant that some other person, some other statistic got what I have already lived. Even though I pray, I beg, (at times) for death, for not waking up from sleep, or a seizure, for a massive stroke, but then I work full time on surviving again. It is MY path. I will not accept that I deserve it, or that it is my fault.

In a world where ‘someone must be responsible’ that is so ‘wrong’. I do not deserve this disease. You do not deserve your disease. I will do everything I can to improve my quality of life but I will not tolerate another to mock or abuse me or another because of a disability and disease I or they had no control over. Yet, this is where I am. And while I could have been saved, I likely will not. So now it is time to face the Fire.

The Fire means that my ‘right now’ may get five or 10 times worse. On my 1-10 scale, for almost all, my 2 is your 15. It is your worst fear, going on for days, then weeks, then months. Why do you think I have guys who hit my head for 9 minutes in boxing and LAUGH while it is going on?

Even what I can’t feel hurts. The bone hurts, the bone marrow hurts, the muscles ache, they scream, they explode like a strike of lightning and that is just one of the over 200 bones in the body. Does my pelvis hurt? Yes. Does my horsehair nerves hurt? Yes. Does my FACE hurt? Yes. That is just life.

The worse things get, the less I can get out, the less I can have fun – Oh I tried to go to see the squirrels twice recently, but it was a disaster, the less people want to watch. But I will keep trying. Always trying, always striving to be more, to be MORE. To grin more. To watch me crawl across 50 feet of broken glass with a grin between the other expressions, the blood coming out my mouth, it would make people ill. I spat out the blood this morning from a couple bad ones last night. It is what isn’t filmed or photographed. And it will get worse.

I am lucky. Linda and I have made a pact. I don’t know how much longer I can keep going, or what it will look like, but I will keep breathing as and when I can. Orwell said in 1984 that "In the face of pain there are no heroes." I don’t believe that. I believe that hundreds to thousands of homes, behind the veil that we as a society pull over the sick, dying and disabled, that there are plenty of heroes. I watch the Olympics and I envy them, knowing the hours of practice at a sport they love. People think they are heroes, doing what they love? I think of those who competed while injured and that is hard, and yeah, inspires me on a bad day, but that was just a day or two or a while, but some people, they face the pain and go on for months, years. Orwell could not imagine a world where someone would face the pain and chose it anyway, and then do MORE.

‘Enter the Hero’ says one of my favorite characters, Peco, in a film called Ping Pong (nominated for 8 Academy Awards). He says it every time he enters the competition in Ping Pong, only he has natural skill but is lazy, and loses. And then he pouts….and throws things. And some point, having dropped out, almost, he starts again, and trains, and trains. Meanwhile, his friend, nicknamed ‘Smile’ as he never smiles, and has no natural skill, just pure hard work, starts winning. Smile kind of hates Ping Pong but likes friendship, and at the final competition sits in the stairwell, while Peco has worked his way back into the quarterfinals.

“Do you believe in Heroes?” Smile asks his coach. Who tells him no, just hard work.

Smile says, as he listens to the crowd, cheering Peco win to the next level, “I’ve been waiting for you.” Sometimes it is enough to be a hero to just one person.

When things are bad, very, very bad, and all I can feel is a hand, or smell something, or see white, I go on, and try to think of a joke, between the pain. I will hear myself scream and wonder why there are so many ways to hurt and not near enough to orgasm. Ha. See, I did it. To be gone for a time, to come in, dopsy in my face, in INDY and have someone, without hesitation say, “Good to see you” and grip my hand, it is, something that is valuable beyond words.

I work so that I may be ready, to be the arm, the voice, the person who reaches out when there is nothing left to hold. I work so that I am that again with Linda.

“Enter the Hero”


Neil said...

Beth, I chose to come here, to read your blog. And I'm not leaving until you do. I'm still with you, still reading, still caring.

Love and zen hugs,

deadrose said...

Hi Elizabeth,

I intended not to comment till I'd finished reading your whole blog, but the hell with that.

My neuro issues (unknown neuro illness followed by progressive essential tremor and other symptoms) are small potatoes so far but they've still managed to take the things I love the best. Medication will only help for so long. Still waiting to find out if I have another genetic goodie - it's autosomal dominant in the family, but my mom killed herself in her 40s, so as the oldest kid I pretty much have to wait and see if I suddenly have trouble swallowing etc.

But anyway, I simply wanted to say hi and I dunno, gimp solidarity! or some such thing, from a Seattle goth woman with many similar interests. Don't know how up you are for email these days, but if you are, I'd love to talk more.

My blog gives very little clue to myself, as I use it more to advertise my latest attempts at artsy-craftsiness. I have issues with putting myself out there in fromt of everyone, I guess (baggage from the past) - just so if you look at it you aren't wondering how it's related to the person typing this. If you're bored and want clues though, I'm mostly found on the net as deadrose.(All that's assuming you have time or interest or energy)

Oh, and I actually talk this way, with lots of parenthetical bits and commas and tangents. One of the problems of spending my childhood deeply imbedded in books.

So yeah, I really like your writing, I'm working my way through the whole blog and I suspect if we'd met in earlier years, we'd be good friends still.

Also, as a doctor's brat, I don't glaze over and start fidgeting about medical issues :)

Enough wibble for now - I have to start getting ready for the monthly grocery expedition. We currently live on graveyard shift here, so all activities take place in our 'evenings' and I generally spend all night farting around on the computer.

wendryn said...

You are a hero. You keep going, however hard it gets. The heart problem sounds really scary. You aren't responsible for getting this. You have lived well and fully, and this disease is something you didn't cause.

We think about you every day. I wish I could help the pain.


Baba Yaga said...

And at the end of a post like this, I see "Reactions: funny - interesting - cool". Pure bathos.

Which is to say, that you take us, your readers, far beyond facile one-word responses. & sometimes to the place where there are no words, only recognition, and sometimes only recognition of the inadequacy of understanding.

Yes, I thikn true heroism is in long endurance, and long perseverance. In slogging away, every minute wanting to stop, but still slogging because that's the task one has.

Swift recovery to Linda. & botherment and long searches for his spectacles to the specialist.

JaneB said...

Oh Elizabeth, your writing is breathtaking, awe-ful, amazing. That you share this path, pour out your energy into writing and caring, is an education, a constant wonder and a challenge (in the best sense) to everyone else to live well, whatever they are living with.

I wish this wasn't happening. I wish I could find the words to match yours. You are my friend and my teacher, and I am here, and I will be here, will be reading, as long as you are writing. And I care.

Linda McClung said...

Being sick has been helped me to understand Beth’s illness a bit better. Sure, I only have a cold, but still, the brain is muddled, the body is weak, and I struggle to get the daily tasks done. And they may not all get done. This is something Beth experiences every day. I was having difficulty sleeping last night because I kept needing to swallow and tried to avoid coughing by sleeping with a foam wedge. I felt uncomfortable and didn’t know if I’d ever get to sleep, but I did. When Beth came to bed, her pain was so bad that she couldn’t suppress the tears or the groans or the gasps. The pain relievers weren’t having any effect and she couldn’t find a comfortable position in the hospital bed. My illness gave me a lot of respect for all the things Beth pushes through in order to survive.

I like your analogy of the rollercoaster. I have always been a big chicken about roller coasters. You finally were able to convince me to ride with you about 10 years ago. There were some scary moments (thankfully they weren’t the super scary rides) but what I remember more was the pain. Our bodies were jarred and jerked around and I remember the aches afterwards. It seems an appropriate analogy. I want to ride beside you and I know when the ride is over I will be in pain (for my loss) but your pain and tumultuous ride will be finally over and you can be in peace.

The other day when we did a lot of sharing, it was hard to admit the feelings I had and see the barriers I had erected to keep my heart safe. I will continue to remember you didn’t choose this disease and that you are separate from your disease. I think you are a hero to many, including me.

Dawn Allenbach said...

Nice to see you. Always. YOU are MY hero, just so you know.

SharonMV said...

Dear Beth,
I have told you before that you are a hero, the hero on a fearsome journey. I will be witness, I will not turn away. I love you.

It is hard for the one who loves you to keep the disease separate from the person. Anger & frustration at the disease, the havoc it causes, the pain it brings can spill over & become anger at the person. It's good that you & Linda have talked about this, it's hard to deal with sometimes. And I've found that people, especially Dennis, get used to me being in pain, being sick - it becomes part of who I am. But it's not! Sometimes, as you said it is a protection mechanism, people need to look away, they seem to lose all sympathy. It's hard. Just because we are strong & can endure the pain (we really have no choice), the sickness, the losses doesn't make our suffering any less. Just because it is every day for us, doesn't make it less than other people's pain. We did not choose pain & illness, but we choose life.

You are so brave & strong just as your love is mighty. I tell you this because not enough people tell you. And because you know, that coming from me, these are not empty words. Enter the hero - you've been here for a long time already.


Vanessa said...

Reading this blog is much like watching a great phoenix preparing itself for rebirth. Surely death will come but even as the feathers ignite and the bird screams there is defiance in it's voice.

You, Phoenix, are my hero. You FIGHT, you SURVIVE, you are defiant to the last even when you have no reserves. Only you send postcards when you cannot see, when there is blood in your mouth. Only you write blogs and send messages of love when you cannot even feel your fingers or your heart freezes and pain clenches your chest in it's massive grip. Only you try to make Linda, Cheryl, and the rest of us smile when each breath must be forcibly dragged from your body and pain reaches every corner of your existence. Only Elizabeth. Only the Phoenix.

Enter the Hero. Welcome the Phoenix.

cheryl g said...

It is pretty startling to be taking your pulse and have it just stop as you take a breath.

A little over a year ago you asked me if I would still be here when the end came because you didn’t want Linda to be alone. I told you I would be and I meant it. Long before you asked me that question I had a realization. There was going to be a point where I couldn’t really do much to truly help you as an EMT, which can be hard for me to accept. At that point I swore to myself that I would still be there. I would not look away. I would bear witness and be a loving presence, a hand, and a voice - whatever I could do to give comfort. I hold that oath sacred and so I am here. I will look into the fire.

You are a hero to me. You are a sister of my heart. You are someone whose life it is an honor to be a part of.

Raccoon said...

Like Neil, I'm still here. You haven't managed to chase me away yet, and you're not going to.

The disease is not you. The pain is not you. They have been impressed upon you, but you haven't stopped fighting against them.

And I don't think you ever will.

yanub said...

(There's a subtle change in your site layout, yes?)

I don't understand these doctors who refuse to offer even comfort to you. I can't comprehend it at all even though I see it happen so often from relatively benign things on to even what is happening with you, even to dying. "Not my inch," indeed.

Beth, it's not that you fight the pain and the dysfunction that I respect you. It is that you also fight each day to be a better person, to have better relationships, to be more loving and concerned about others. You are a genuinely respectable person and would be under any circumstances.

Elizabeth McClung said...

Neil: Well, I guess remember to turn the light out when I'm gone. ha.

Deadrose: How prognastic of you to know I would go read your blogs and go, "Er...?".

Neuro issues suck, disabilities kinda suck. And I hope I didn't give the idea it was a contest or anything. Your symptoms sounds like Corea (sic) the precurser, of which I know two people who have it as well - do you have restless leg?

Yeah, I found out I was a carrier, another dirty secret they don't bother telling you. Trouble swallowing, that one I don't know yet, but I am willing to look it up, and read about it - I do like to email (I am just limited to about 2-10 a day depending on my condition that day).

Your parathenticals, does this mean you read a lot of Swift. I used to claim the 17th century defence since I could not stop myself from capitalizing every word I thought was important. Teachers disagreed, and grades suffered, alas.

The phrases "Seattle" and "Graveyard shift" make me very curious (you work nights in a morgue with a guy from Happy Days?).

Wendryn: What bothers me is that isn't the hero supposed to make a comeback or something? I keep trying to convince Linda to let me enter competitions or at least do training, but she says no, apparently picking up the pieces is not fun when there is one really BIG piece.

Baba Yaga: Yes, sorry, that was an add on in case there were lurkers who wanted to comment on the more banal topics: corsets, sex, desire, more corsets,

I think of Seth Vikrum (sic) A Suitable Boy and the father who carries three times the weight in salt and doesn't want to have his son, for whom he does this, to earn money for medicine, see him, the pain, the weathering and collapse of body. Heroism is, in some cases going on, and paying the price not because it is just or fair but because someone has to.

I still search for uplift, for the ascent of thought every day, and some days, when my brain works okay, and I read five or six books, I enter a different place. Zap, a bit of too much electricity on the brain and it is gone. I wish my heart would work though. A year or so ago it would be a hospital visit, while now it is....distracting.

Jane: Thank you. How I wished I was irritating some department head for years, or having students transfer into my class like they used to 'because they say you are a hard bitch' - The section head thought that was a complaint - ha. He didn't transfer to me unless he wanted a challenge...so do I. But that's not my life. Never will be able to have that cat, kitten. But as long as I have vision or someone to type for me, I will keep thinking, keep working, keep recording. To find new information or explain it in a new way, with an original premise - I'll keep trying. My journey to the center.

Elizabeth McClung said...

It is what I said the day my hope was taken away.

deadrose said...

Hey Beth, thanks for the answer. Yeah, the blogs - I tend to compartmentalize a bit. Let's just say there are past reasons, for now.

No restless leg syndrome, essential tremor is a diagnosis all it's own. Usually genetic, but I seem to have gotten it from whatever brain injury was done during that illness. It's what Kate Hepburn had. Too bad I don't get to be as cool and beautiful as Hepburn in the bargain. Right now the meds are good for a few months at a time mostly tremor-free before I have to go to a higher dose. Eventually it'll probably require brain surgery, if I can find a way to pay for it. It also puts me at a greatly heightened risk of Parkinsons.

The other one I don't know if I have or not is called oculo-pharyngeal MD, the 'with limb weakness version'. Most of the hospitals, testing centers, and doctors for this are in Canada, as the highest rate of this is among Quebecois (which my family is not).

Wasn't trying to make a contest out of it, I more intended to let you know there were more of us goth girls with Hello Kitty fetishes doing the neuro dance. Now I just need to get you listening to Korpiklaani, then you and C-ko and I (local friend)can become a gang or something!

I read Swift, I read anything that's not actively running away from me (err, except Stephenie Meyer and a few like that), and have since I was so young I can't remember not reading. That, combined with spending most of my life in the US, but a few years in Ontario, gives me not only an overly verbose vocabulary, but my spelling sometimes bounces around between US and Canadian conventions, which confuses people no end.

I live on graveyard shift because that's the shift my partner works. We tried living on overlapping shifts but he's too sensitive to noise when he's sleeping, so I couldn't do any housework or anything like that. I don't work any more.

Your writing is fantastic and really draws me into your life. I have to take breaks to remember who *I* am; yesterday I kept feeling mild surprise that I was walking.

Anyway - I've been migraining for about 15 hours, so this may be a little disjointed. Now I need to go feed our snakes, since the rodents are thawed and waiting. Hope neither is feeling feisty as my reflexes are really slowed down by the pain and getting tagged by a boa isn't on my top 10 fun list.

Time to drag my partner away from his game... (we also have a Monday night-Tuesday night weekend, so for us this is the equivalent of late Sunday afternoon). Talk to you soon, and take care!

SharonMV said...

Dear Beth,
Often the hero's journey is to the center, the inward journey. In myth, it is represented by the journey to the underworld, eg; Odysseus or Gilgemesh. And you've been there or pretty close & come back. The hero comes back with special knowledge. The inward journey is symbolic terms is a journey within - to the center of the mind & soul. You have traveled far already & shared with us what you have seen & learned. A difficult journey. but you keep going. And you keep writing. I will do my best to understand.


e said...

Dear Beth,

You and Linda and Cheryl are all heroes in my book. I chose to come here, too, and will continue to do that.

You do what you need to do, and I'll cheer you on at every step.

Your lovely post card made my day!

Lene Andersen said...

"I will not accept that I deserve it, or that it is my fault."

Something I wish everyone who gets sick would be told again and again. That alone could do wonders for your spirit. That sentence alone is the arm that reaches out.

Diane J Standiford said...

No idea what to say, just don't want to be a "lurker" which I have found many bloggers don't like. Can't I be a "reader?" Hard to type just now. My brain is empty, and everone said it all. Is it wrong that sometimes I envy you? You write so well, have such good friends...people who care so deeply for you. I often feel very alone. Am I crazy? All I think of when I read this is how lucky you are, how wonderful your life was---apparently I am a selfish bitch. I spit on me.

Elizabeth McClung said...

Diane: It is your choice to be what you want to be, comment or not, your choice. I do have good friends and I am fortunate in that. I write because I have written 1,000+ words a day and edited more since I was in 5th grade. It is what I wanted to do. I don't write as well as I used to, or rather I have more dyslexia and other issues. But much like playing the piano, "Oh, if only I could play the piano like that." - you can! Just start practicing every day. And in a year you will have been practicing and playing the piano for a year. "I had", "You had" HAD, HAD, HAD - you don't deserve your disease, I don't deserve mine, but here is here, how to grow into tomorrrow is the question and the challenge.

Envy me, distrust me, hate me, get angry at me, it is a choice and at the end, if that is what you want to achieve, go for it. As for me, I'm going to learn how to play the piano.

rachelcreative said...

Hi Beth

Feeling a little lost for words. But wanted you to know I am reading. That I'm here wherever the turns in the road take you.

Please know I am not a "what you want to do is ..." person. I hate that. But ... I wanted to mention LDN (Low Dose Naltrexone) again to you because it has had some radical effects on auto-immune disorders and because it's cheap. I think it's around $27 a month. I know cheap is relative.

Anyway - have a read, or get Linda to have a read and see if it's of interest.


I have more links and there's lots of advice about to get hold hold of it (including without a prescription from the US).

I also wanted to let you know a letter is on it's way to you along with a pop card which you can keep, send or use as a gift. I hope you like it.

Diane J Standiford said...

LOL I love that photo of you boxing!

FridaWrites said...

I agree with you, none of this is your fault nor do you deserve it--or anyone else.

You are my hero, and I admire Linda's courage too. So many people walk away but she doesn't even consider taking the easier path--she's there on the ride with you as much as anyone can be.