Wednesday, January 21, 2009

Badminton, illness, and change

Change happens. I know this, we all know this. And yet it bothers us all the same. When we are young it is sort of exciting, while as we age, every little spot or ache is a new limitation. These are the small changes. But across a life there will be dramatic changes, ones which change not just the outside, but the way who we are. Whether we want them to happen or not, they do.

A person is hit by a car, a girl walking home is raped, a man is attacked and beaten with a baseball bat, a person falls down a flight a stairs. Change. Maybe everything eventually looks the same, but it isn’t, is it?

Being disabled and being ill, or impaired is like that. One day, a doctor says something and then it echoes inside you, bouncing back and forth and you have to make a choice: chemo, radiation, amputation. And then, if you are lucky, after a period of horrid days which consist of a hell that cannot be described, the night before chemo, the vomiting just seeing them bring in the bag of it in special anti-toxin gloves. But one day it seems as if life goes on, and while you are not the same, you have a new normal, just a check up every three months, then a year. A week of worry, before the test, before the results and then you are given back a life you realize had been temporarily held by another.

The whole diagnosis process for disease: sometimes it is quick and sometimes it isn’t. Meanwhile, it is a mix of excitement, dread and the horrific. When they come back and tell you that they need to inject you with more radioactive material without sedation because your blood doesn’t seem to circulate correctly, that’s pretty horrific. When they tell you that you are going to give 21 vials of blood, then you need to pee in a jug before coming back in two hours to give a few more vials of blood, that is pretty horrific. But then there is the new people you meet and finding out that you aren’t the only one who had Raynauds, or the only one who lives with the love/hate/burn down their house relationship with specialists. And there are new sports to try, new things to do, and for someone like me, lots of challenges. And while I know that some people need to stay in bed for most of the day I don’t get it, don't understand how. It is just pain right? (well no!) I wheel myself out every day, wheeling up myself hill crying. I visited places, I traveled. And then things changed.

I lost a year, maybe 16 months in tests, and somewhere I fell off the grid and now I am sort of in a constant status of bouncing in and out of dissociation or insanity. Because I am dying, and not in a plucky, still have strength and go do races dying way anymore but in a being at home and wanting to vomit. Falling unconscious several times a day, bleeding out of my nose, my anus, checking my eyes for blood, for the starbust of the brain deprived of oxygen. Having to be checked 20 to 30 minutes of my day, every day, because I stop breathing several times a day.

Since last week was a total bust, THIS was going to be the week where I did not work, where I sat still, very still, and where I rested. This week was when I gave my body a chance at living into the future. I was to REST.
I went to badminton tonight after many, many attempts to go to badminton. My first time in I don’t know how many week, and neither does Linda. It wasn’t particularly pretty to start with, the birdie would fly towards me, the birdie would fly past me, my arm would shoot up and swing at empty air a quarter second later. Not quite getting those connections. But I improved. It wasn’t like it was before but it was enough. I could serve and I could hit the slower ones. And I could hold my arm ready for the rest. I won the first game and it seems that for a second or so, I smiled, and this one, while it isn’t real, it looks real.
My final game was with Linda who had come with me, in case my volunteer didn’t show (she didn’t). Linda was moving, she was hanging tough and going for the birdies. She came to me to see if I had an extra hairband. I didn’t. Then I suggested she use her “Girl’s gotta fly” blue wrist band – which not only helps my health fund but can be used to hold your hair back in a pinch!

The game was tied until my partner and I tried this thing called “strategy”; I try to get the birdie over the net and cover the mid range and he cover the back and we soon had Linda and her partner running. Not that they didn’t fight back, but in the end we were triumphant.

I took the victory with the good grace and the elegant nature for which I am known for in the sporting community. Well, I am known for a PARTICULAR attitude. Hey, I didn’t lose this one so you don’t have to see my pouting face.

Everyone will want to think that yes, I am back. I am sick but I am fighting back. Well maybe I am going out and I am going to badminton but life has changed since I last showed badminton pictures. I am writing this in a race against the oxygen in case I need to go to the hospital. I have been using a EMT mask to keep the high flow oxygen contained longer and yet my hands are turning purple, and I am on two painkillers and have a blood pressure which explains why I fell unconscious twice since coming home. Is it my damaged heart, my wonky vascodilation, my lungs not converting or all three? So much for ‘light exercise’, eh?

On Monday evening, after my nap, I was too fatigued to keep my body upright and was leaned against the wall. Still there 30 minutes later when Linda checked on me. Fatigued to the point that I felt, I knew that this was it, so with my arm supports I wrote some goodbye’s and for the rest of it I just sat there listening to my breathing, stop and start. I did not exactly have peace, but I felt, that everything that I could want and accomplish within the limits of this illness was done. The postcards sent, the packages sent, the blogs posted. It wasn’t everything I wanted but when I couldn’t move my head, and sat on the edge of consciousness, this was it then. I would be dead next time Linda checked.

I wasn’t, but I still don’t know why.

We all come into life different. The way we experience life, the personality, the sensitivity, even how we are physically is different, to the point of being disabled from an early age. But people adjust and get on with it. I had my own interaction with that, a friend with two heart transplants by age 16. But sitting by and living that life is different; I have learned.

Then there are those for whom they bring their own particularly innocence or flair to this society; and while I’m no Qwen, (where DOES he get those clothes...and matching arm warmers?) I like to think I’m fairly memorable. Maybe because I am often threatening high governments bullies, or talking to the police one day to give me a job wheeling down bad guys, the next day trying to talk them into giving me a police record (and to hand me a big rock I want to throw through the Ministry of Health building). Then when they come to check if I am murderer, I volunteer to be a human shield on their next armed assault since I can’t feel anything!

The thing is that I knew who I was and the one thing I knew was that I might slip, I might fall for a time but I don’t fall down; I don’t fall where I can’t get back up. That just isn’t who I am. I am Elizabeth McClung and be it a bully or an army, I stand opposed; whether joined or alone. But see, the little micro-organisms which are eating me as food, which are literally destroying my brain, eating it. Destroying my nerves, they don’t care that I am “Elizabeth McClung” – and so I fall. I fall and I don’t get up. Welcome to disability world, the theme park which has a slide for an entrance and no exit.

They don’t give you a book when you start noticing bits not quite working right. You sit there, and soon you know you are unwell. You are sent for tests and you are terrified. And then they come back negative, and you are relieved, and then they keep coming back negative, and after several hundred negative tests you are terrified again. If people look close they can see that you aren’t well, but hey, that could be anything. And strangely, at least for me, and for others, what other people think makes a difference. I spent a long time lying. Tonight when people asked where I had been, I told them I had a bleeding problem, but “internal mostly, I like to keep my problems to myself” (no one laughs at my jokes). They asked and I told them the name of my disease, they wanted to know what it did and I told them. “My God, my God!” one guy kept saying as I wheeled onto court, my turn having come up, I called backed and apologized if I had bummed him out.

I want to be the person who is able to break the rules but diseases don’t have rules, at least mine doesn’t. It simply does, and I live or I don’t. Change happens, and this time it is going to be ugly, it is already ugly. Am I the person who is drawing the curtains on the 'fight anything' aspect of my life? No. It is my disease. I often can’t breathe, then there are times I stop breathing, times where my heart stops beating, times, where I cough of phlem, and blood, times when I try to take a dump and blood comes out because I stopped digesting certain food, and they are ripping me up.

On Monday, my government manager of care acknowledged my impending death, and in doing so, withdrew care except the offer of “respites” where I would be kept in bed all day, in a hospital setting. I already have that. I have the same equipment and medicine they give me at the hospital here at “Station 2” – my desk, with recline chair, for passing out. I have my blood pressure charts, I have my medicine from vaco-dilators, to blood thinners, to seizure cycles medication, to heart rhythm medication. I have three levels of oxygen, of which I am now on the highest, the mask. And when it gets worst, I go to “Station 1” which is the hospital bed, which has the same things, but the advantage of raising my feet up to put more blood in my heart, and waterproof mattress so I can bleed, shit and pee over it.

The manager was going to be withdrawing certain services. I was to allowed to not be moved from bed if too weak to raise my head. There was some concern that workers might have vacuumed for me! But other than that, nothing was to be done, at least not until a doctor promised the government manager that I would die within six months. A few months ago it was 1 year, they required. That I have a note saying I would die in one year and I could get hospice and palliative care and pain medications and nurses. But I guess there are budget cuts and when I called the palliative care aspect of VIHA (the government) they told me that if I could not call upon them until I KNEW there was only a month left, that was best. The manager knew I was dying but until someone promised I would die SOON, and put it in writing, no help.

So we are going to Seattle to get, beyond a diagnosis and maybe something to prolong my life, also a note to promise that I AM terminal and that I will die. Because the medical evidence shows I should die, that maybe I should be dead already. That I do have a very rapid form of MSA. But it looks like it will cost us $1,000 for a visit, a consult, and the moving of me, very slowly and carefully from place to place down to Seattle and back to have a note saying, “Yes, she will die in six months.” I know several people who died without the note; and they got no help. I can get pain medication if I am terminal, no one will worry about addiction then (woo hoo Morphine here I come!). Maybe I can get that ‘last wish’ program to give me my last wish; the VIHA building in flames with the notice, “If you can get a fire marshal to verify that this fire will be put out in an hour or less; then fire fighting techniques will be applied.” Or should I just ask for the trip to Disneyland like everyone else?

Change has happened. I can’t reply to every email (1/10th would be nice, since I tried to reply to all emails from one morning and did 32 emails – then I couldn’t sit up anymore). I simply can’t blog every day. I would like to blog four times a week. I notice that my numbers are dropping but I can’t do anything about that. I would rather live than have another 400 people a day reading. Last week I rested and watched TV for 5 hours (yeah, that was the whole week, not a day). This week, I have just sat and rested 2 hours. Change in habits, in who I am takes time, and I AM trying. I am checking out this new future, and trying to see how and where I fit in it.
I can’t remember things, I can’t remember more than 48 hours ago, I mix up words, I have a hard time answering questions, I forget the morning if I have a stressful day, I have forgotten most of my last several years. Linda talks about trips and sometimes I remember and sometimes I don’t. I used to have as close to a photographic memory as a person could get. I knew hundreds of thousands of books and thousands of movies and now, maybe I might remember the title of my favorite book, and I might not. My world is very small, it is the computer, it is this desk (I can’t reach most of the room), a bed, and that’s about it. It is a row of DVD’s, a row of manga, a gargole, an anime girl in a wheelchair, and origami of squirrel along with a row of pills. That is the life I have choice over, that is the part of my life I control.

No, I haven’t given up, no, though I know the feeling of being on the edge, I am not ready to die. Never the less, between the disease and the society they have literally put me in a little room. That is where I sit, looking out at the stars and the tree, across from me. And the little things, like the food I have within reach, like the books or entertainment within reach become very important. This is what disease looks like. People send flowers. The flowers wilt. They get thrown away. I get tired, so tired. And it seems at times that people keep waiting for the old “you” to come back. When I want to scream that ‘me’ is right in front of them. They are the ones who can’t accept this final 'me' and so they, the last of those who held on through hope drift away, like family members, to ‘process’. And the pain, the hurting all over and the way it rains against the window makes it easy to get upset over nothing. And I cry at odd times, while most of the time I don’t cry at all. I talk about what your life is, plainly, and other people cry. And other people sit in horror. Someone else leaving. Because when it comes to life, I don’t know if I am entertaining anymore, but I am fighting to stay conscious to tell you what living at the edge of life is like. And quite honestly, if you want to be entertained, please go masturbate. This is life, much like babies, who are very cute but also shit with unbelievable frequency, and vomit, and drool, and vomit again, and get sick…..a lot!

If you have a certain type of disability or disease, you already know what I am talking about, and maybe you can add or adjust me. Or just put "you" intead of "I". I still live, I still have emotions, I still care, I still guard the few things that are within reach, I still look out the window and wonder what people are doing. I wonder what job I would have? Would I be in a restaurant with Linda now, and would we be talking equity instead of seizure padding, or how January and having to pay the annual insurance deductible again is hitting us? And would I always know my name and Linda’s?

Change happens.

34 comments:

SharonMV said...

Dear Beth,
I love you. I love you now. You are still you to me. I grieve for your losses, your pain, physical & emotional. I know what it's like to be in a room, alone, while life goes on outside, while life goes by. Yet, I still cling to hope - being very fortunate that I have hope, that my diseases allow it. I have hope of getting better, at least of getting no worse. How I wish you had that too.

Thank you for the latest postcard. Some of the other cards are like old friends. I keep them within easy reach & look at them, the image on the card, the stickers & stamps & the little story they tell. I re-read the messages. These are among the treasured things I keep by my bed.

I am crying for you tonight, yet still a brightness flares in my heart whenever I think of you my most memorable friend.

There is a kind of glory in what you've done here, in your blog. In opening yourself to us. In the stark honesty in your telling of life on that terrible edge.

Sharon

rachelcreative said...

You said "Because when it comes to life, I don’t know if I am entertaining anymore, but I am fighting to stay conscious to tell you what living at the edge of life is like."

Well I sniggered at your internal bleeding joke if that helps?

You tell me so eloquently what life is like at the edge. As ever I wish you were not there. But there you are and I want to hear.

Because of M.E. I have to see myself and my life in the present. I am only who I am today and who I may be tomorrow. So mostly I see others that way too.

I'm open minded about what life and dying holds for you Elizabeth. And I am here to hear about it all from you if you are able to tell.

PS: I'm sending you mail every 2 weeks and today I am writing you a letter. It will be posted in a day or two. I'll let you know by email when it's on it's way.

Kate J said...

Still here, still reading, now wearing the t-shirt!

Beth, I look at your blog every day that I'm online, and if I don't get to the computer every day I go back and read any of your posts that I've missed. And I still think you're one of the bravest, gutsiest and just plain stubborn people I've ever met. I say "met" although of course we never have actually met face-to-face. But I know more about you and your daily life now than about any member of my family, so I think you count as one of my very dearest friends, ever.

I was so pleased and proud when the "wheels and wings" t-shirt arrived from Laura, and put on straight away, dragging my poor long-suffering partner outside to take a photo (now on my blog and Laura's!) and will be looking for a run I can take part in. I'll be running for you.

Donna Lee said...

As usual, you've left me without words to respond. I check the blog to make sure you're still there. We have a "6 months of life" clause in order to qualify for hospice care here,too. It sucks a big one. And I like your idea of a note about the building on fire!

Anonymous said...

You said " I spent a long time lying".......

I have been wondering how someone can't breath one minute and can't hold thier head up the next....but will magically get a burst of energy to go "play"......

Elizabeth Heller said...

i will not leave.

Lene Andersen said...

You don't have to be entertaining for me to stay (although that internal bleeding joke was pretty damn funny).

This was an amazing post - your honesty about living "on the edge", about what really happens is hard to read, but necessary, I think. It's a countermeasure towards the movies, where everything is pretty and accpeting.

Wish I could help more. Wish I could write more - I'm having injury/pain issues at a really shitty time, when you need people who are consistent. There's a card on its way to you, though.

I'm glad you're still alive.

Neil said...

I'm still here, beth, still with you until... well, I guess until you're dead and Linda ends this blog.

I'd say it's your disease that's breaking the rules; but maybe it's just that the disease is making up its own rules as it works you over.

You're telling us that you are living on the edge of life. Well, as far as I can tell by reading the early posts from this blog, you're one who has always lived on the edge. I guess this just isn't the edge you were looking forward to when you were in Cardiff.

Love and hugs,
Neil

yanub said...

I'm darting off to work, so I can't say as much as I'd like. But first, I love your jokes. Both the one about bleeding and the one about your last wish make me laugh so hard I cry. You may feel like shite but your humor is as sharp as ever. Probably sharper.

Second, a friend of mine told me about his neighbor, who takes in abandoned squirrels. From how he describes her, she is an able-bodied doppleganger of you. Just thought you'd like to know that squirrel-kind is in good hands.

FridaWrites said...

It's more than a shame that people aren't given adequate pain control. When is your trip to Seattle?

I like your term "new normal"--we adjust to changes, though we'd rather be talking about equity rather than debt and medical equipment, new job opportunities, etc.

JaneB said...

Change happens, and you are there recording it, sending back messages to us from the most remote, unknown places. You are an amazing person, and I'm still here and reading and struggling to find things to say to you.

Here's something that happened today that you might find... bizarre. I went to a meeting about university teaching, and the speaker said "higher education isn't a toblerone, it's more of a melted chocolate orange". I have NO idea what she was on about, but it's a pretty bizarre analogy that could fit a great many things and systems really. (Incidentally, on that scale your care providers are probably somewhere around the trampled on, chewed, then vomited back up by dog canine choc 'treat').

I thought that your joke was pretty funny, I shall try to remember it in case I ever need it!

Victor Kellar said...

Change does happen. As you have said before, we are all terminal and isnt that the biggest change of all. I hear you tryting to adapt as best you can, to figure out to change, even when it goes against your nature. Those are the most significant changes of all. I have no idea what you are going through, I can read and try to process it but really, I can't really know.

I just know that I want to support you in whatever changes you need to make, in whatever changes are thrust upon you. My affection for you won't change, niether will my support .. and Collette feels the same way.

Our copy of Zed arrived today, thank you so much, the inscription was lovely. I will email you about it next week

Take care

cheryl g said...

How true… change does happen. I know I don’t do well with change although I have learned better ways to cope. If I were diagnosed today instead of 10+years ago it would probably be for adjustment disorder instead of chronic clinical depression.

I am glad you went to play badminton and I hope that you had fun. I can imagine your conduct upon winning since I have seen it before. Yep, that picture pretty well sums it up. I do need to point out that for you there really isn’t such a thing as light exercise anymore. That doesn’t mean I think you should stop playing badminton when you can but be aware that there will be a longer recovery time with more needed medical support each time you play. Good thing your personal EMT will be around for a few weeks.

Thank you for this poignant look at what your world is like now. I am still here you know. I am angry at the agencies and medicos who are supposedly “helping” you. I am angry and sad at just how unfair it all is. I want to rail at the unfeeling universe and I have of late.

Mostly I remain determined to do what I can… be there for you and Linda. Stay as a friend and a witness. Do my best to help you remember and believe that you are loved.

I don’t feel like I have said the right things but I am not sure of the words. I hope if the words are wrong you can still feel my love for you.

Anonymous said...

Truth matters more than entertainment. And it's rarer.

cheryl g said...

Anonymous

What makes you the authority on truth? What gives you the right to sit in cowardly judgement on someone who's life you can't even imagine. I say cowardly judgement since you make your pronouncements from the cloak of anonymity.

I am an eyewitness and I can tell you there is no lying being done here. Yes, Beth can play badminton from her wheelchair. Afterwards she spends many hours on oxygen and in great pain, of late it is uncertain whether playinng is going to send her to hospital but it is her choice to make.

Yes, my sister is dying but we don't know how long she truly has. Personally I want it to be a very long time.

I do not like bullies and cowards and that is what you are. You make anonymous judgements on another, you inflict pain and you cause emotional duress. Does it make you feel important? Why don't you go do something constructive with your time? You could definitely use the chance to build good karma.

Bottom line - go away and quit attacking my family.

Abi said...

I want you not to be suffering like you are now, but I accept you and love you where you are right now.

I love your post today because it just says everything so well. It all seems so unfair.

Not really expressing myself very well here. I'm sticking with you, though.

Tim said...

Beth,

I am more heartbroken every day by what is happening to you - to that champion's body and brilliant mind that you once had.

Though there is no way the I can put myself in your wheels and no sympathy or condolence will ever be anything but cold comfort, I am taking this journey with you because you are letting me share it with you. It's a journey that I'll take myself someday, maybe not in the same way, but I won't live forever. In a way, you're preparing me and making me see how good I have it. I wish the price weren't so high...

Your courage, your generosity, and your ability to put into words what you're feeling, what you're doing, and even how other are feeling and acting towards you make it possible for me and all of these other readersto be here with you until you can't do it any more.

I wish I could take the pain away - you don't deserve it. And though there are those miserable pricks like doubting 'nonymous who get on your shit for going out and trying to get a little entertainment, or wanting to cut off your benefits since you're not still supposed to be alive, well, there is still good in the world too. I've told you that before.

I'll be here for you until the end. I'll buy you those gloves (as soon as I get the size from Linda) like I promised so you can get out and enjoy a bit of what life you have left. I'll help you any other way I can too.

You're very precious to a lot of people, Elizabeth McClung, and don't you forget it.

Raccoon said...

I have never known you when you were not you.

Yes, you are different than you were a year and a half ago, when I first met your blog. But, if you are not you, then who are you?

I know, too existential.

I laughed at your joke.

My father cooked a dinner -- he was a very good cook -- and invited my whole family. My brother wasn't able to make it (he was stationed in Germany); I brought my girlfriend.

At the end of the meal, he said something about "everything free has a price tag. The price tag for this meal is for you to hear that I'm dying of cancer." Now, this was the first time my girlfriend had ever met my father, so she was a little bit shocked. She was a lot bit shocked with my reply that I expected a tractor to roll over him, rather than cancer.

There was a purpose to that story, but now that I've written it down I don't remember what it was.

*note to self: give live plants instead of cut flowers, they last longer*

Cheryl, I think there are two "Anonymous" posting here. The first one accused her of lying, the second one said "truth is more important than entertainment;" I think the second one was agreeing with Elizabeth, not disparaging her.

At least, that's how I read it.

So now your medical staff isn't allowed to help you do anything? That's a crock of...

At least Seattle is coming up soon...

Lene Andersen said...

Anonymous,

If you must sound like a judgemental asshole who opens his mouth and lets uninformed crap dribble out, at least have the balls to sign your name. If you'd taken the time to read even a few entries on this blog, you'd have known enough about Beth's condition to not sound like a moron. Unfortunately, you choose to speak before thinking. Tip: try it the other way around.

Elizabeth McClung said...

SharonMV: I love you. And I knew you would understand, about the room and how the world goes on outside and who is governor and who they are sleeping with is so pointless when all you have is the room. I too wish very much for hope, but for me, hope is in getting good pallitive care.

I am glad you like the postcards. That they are something special. Now I wish I had taken MORE time over them. I know what you mean, there are people who I think of, you included which have a light inside them (now when will you keep your promise, for I am still keeping mine).

Yes, this one was honest, and hard. And as usual, the most honest ones drew out someone who understands nothing of disease.

Rachelcreative: thank you, for laughing at my joke and for listening and telling me that I am making some sort of sense here at the edge.

I think I can understand the need for NOW, for 'this day' for 'this part of this day' with M.E.

What does 'open-minded' mean? What does two weeks mean? I don't understand those bits. Can you please explain?

Kate J: Yes, first you get an account of the theme park and now you have the t-shirt!

I too want to find a 5K or 7K to do, though I am not sure if Linda or Cheryl will be assisting me or trying to get me stopped.

I too feel that we have met, we have been to many of the same places and I am not sure if "stubborn" is really a compliment but since it is true, how can I complain?

Donna Lee: Thanks for commenting, even when it is hard. I liked that idea too, the whole, "What if these people were treated as they treat us?" - the whole six month clause is a head mess up as you quickly go from trying not to completely accept you are terminal to desperately trying to tie someone down; who while specialist will turn away if you ask, "Will I live X amount of time?" they won't put it on paper. And eveyone knows and some say but you get weird and desperate to find someone, anyone who will demonstrate that YES, you will definately die. And wow, what a relief that day will be when I get that note, and can finally get pain control - happy because someone will medically assure me I will be dead soon. No, that is no mess up of the brain.

Anon: You don't happen to be the same management from labour and citizen services who sent the police to me. As you take a sentence "I spent a long time lying" about how I spent a long time lying to people that I was NOT dying so I would appear like them, just maybe with a little sickness. And then try to make it appear like a confession. It is. I lied to people and probably still will to make them feel more comfortable about death. Shall I lie to you, about how you are a hurtful and rather mentally ill individual who seems to enjoy nitpicking at those who are dying. Do you want a list of blogs of people who are dying to go and nit pick them or do you just hate me. But I will lie and say, that I think you need therapy (when I really feel you need ECT). That you, must never have known anyone really in an intimate way, to know someone who has cancer, terminal cancer and has a few good hours and goes out to dinner, then PAYS for it, or even someone with fibro, or MS, or Lupus, or Lymes, who saves up energy to do things that then unexpectedly push them over the edge, so that they have to leave early, or lie down, or both. Or worse, call an ambulance. That you are poor in life experience, compassion and knowing other human beings (since the conditions I named would mean you don't know 25 people (statistically) with any closeness).

There is no magic when on Monday I can't hold up my head or move it and on Wednesday I go to Badminton. It is called MSA, it is a terminal disease. You have head-up-the-ass disease which IS curable, and if you would like to change it; it only requires an effort of will, and a desire to know or care about other people. Being a cynic is sort of like being a giant boulder in the road; yes, we all acknowledge that you are there, but what the fuck use are you?

Elizabeth Heller: Hey, if you are staying, I am staying (well, after I take a nap!).

Lene: Thanks, though I will try to be entertaining. This is my life and on that post I was thinking of several people, I guess yourself included and what it is like to try, even when you want to try and you are stuck in a room, for reasons beyond your control. And how that changes me at least, in how others see me, in how I see myself. How do I start to change that vision again?

Though I am in pain and I will NOT be saying this when I go to lie down for a nap, right now, I am glad I am alive too.

Yes, life on the edge is not pretty, Neither is RA after a couple decades I hear, but we go on, no?

Neil: Well, I think the disease was here first, besides it is like the wind, I just happen to be a flower blown away; is the wind a bad thing? It can't think, it just is what it is. I think a little genetic testing on my parents part might have helped, or telling me I was a SMA carrier, but hey, that's in the past now, sort of, except I am still alive.

There is quite a different between being the one controlling a little how and when you live on the edge and just being pushed to the edge randomly, because you have this disease. Very different.

Yanub: I am glad I made you laugh, I do wish that I could have a last wish, come on, why does it have to go to cute kids, probably to keep the wishes from being X-rated!

Excellent, I think Squirrels are pretty simple creatures which is why I like them - they want food, they want sex, they want food and sex, they hide food, they forget where they hide it, they get more food and they hide it too and think they are clever. Okay, now that I look at this, why am I so attracted to squirrels and not to a certain type of men?

Frida: I too am ALL for better pain control, Linda today went to the Pain specialist office as he does not return phone calls. It was closed, it is only open 2 days a week. I asked Linda where I can get the diseases that have the type of hours that these medical people do? We both sort of laugh/groaned

Seattle is waiting on about 20 pages of paperwork which I am working with Linda on tonight, then hopefully make the final booking on Monday, reserve the hotels and go (with me vomiting in anxiety the whole way - the good news is "You are a rare variation and I am not sure why you are alive." Me: "Will you put that in writing." them: "Yes." Me: "All right! Wait, you mean I could die any day?" or BAD NEWS - them: "Wow, I have NEVER seen anything like this before, have you, no, you? No, yeah, it is like you are simply a wheeling paradox, wow, and I though we were pretty good here."

No, no reason to want to be nervous!

Jane B: that is the job as a researcher, to notate what is unknown information; however I don't think I can replicate this experience. Darn it.

higher education isn't Toblerone? What? What about Godiva Choc? Is that like Oxford? Or is higher education like the white toblerone? Or the giant ones that you buy and are 2 lbs in weight and you eat about 1/3rd and swear you will never eat chocolate again?

Wow, can I come lecture at your uni, I can be WAY more off the way than that, and do it in an interesting accent too!

cheryl g said...

To clarify... I was speaking to anonymous number 1.

Shea said...

I love seeing your badmitton pics. I used to love playing and wish we lived close to you. I would be your partner any time!!!

Drake said...

Hi Beth

At this point, you can feel proud that you at least manage more than silly o'l me who's affliction is not even as serious as yours ;D.

The Marfan's meeting is only tomorrow but I will let you know how it goes. As for the problem we had..we didn't sort it out after lunch and my superior went on leave, so I figured it out all on my own!! Mwahaha! But I am weird in the sense that for about ten minutes after I would feel as proud as a mother cat just having had a bundle of kittens and then...I feel like I hadn't achieved anything...in fact I feel worthless again.

But you...in my eyes, there is nothing you could not do...Nothing you can not achieve and that amidst all of your trials and tribulations...and that makes me feel kinda shamefull...*blush*. You can teach the world so much.

Honesty is good and speaking about it is even better. I have had situations where I had to be hospitalised because I had bottled things up for too long and exploded like a volcano... Unfortunately, that's a side affect of trying to be "nice" to others the whole time and always thinking of others and not speaking my mind out of fear that I would hurt someone. A lot of people see that as a sign that i am "weak" and "timid"... but in a way, it is my way of taking the world on my shoulders and giving others a moment of respite to be them and not be confronted for it.

I take enjoyment out of making others smile and making them happy to my own detriment...like opening doors for others while my wrists are burning like hellfire.

Yet, I can't see my self in the same light as you... You are an angel in my eyes and angel's don't die ;D.

I guess the last couple of weeks of fatigue must have been only a drop in the bucket of what you must experience. Yesterday, half way through the day, I found my self staring blankly at my screen with the letters fading in and out of focus as my eyes wanted to close.

It's weird, as I had always had trouble to fall asleep...now, when I lie down for only a second, there is this overwhelming feeling of sleepiness and I drift off in the wink of an eye. It feels nice...it feels normal for a change but also, going to bed at 7 in the evening ain't all that normal...well except maybe for you at this point...

Keep on doing what you do and keep on doing it at your own pace and rate. You do it so well...much better than I would have been able to do, were I in the same situation.

Love & Hugs

Drake

Veralidaine said...

Cousin,

My internet is still in and out as I am still out of town-- so a fairly short comment once again.

I love this you and the past you and any other yous that will be in the future. You do not need to entertain me. Your jokes are still funny, and your raw pain and emotion touch my soul in ways no writing has before. You are my cousin here, now, in the future, and you still will be my cousin someday when I notice a little bit of EFM whispering by me in the breeze when I decide to ride my horse in the middle of a blizzard because there's a show coming up and my cousin Beth wouldn't have let a little snow put her off working toward a goal.

I don't know how I will "process" losing you. I've told you how poorly I deal with grief (although you may not remember that now). But I will keep my promises to you until the very end, and when the time comes to mourn your loss, I will try to honor your memory by surviving my grief a little better than I did the last time someone in my family died.

I need you, for as long as you can keep your wings folded through the pain. I understand someday you will have to spread your wings and fly away. But please, cousin, for now, rest as much as you can, drink your Gatorade, and try to keep yourself anchored to the ledge a little longer.

SharonMV said...

Dear Beth,
I'm working on keeping my promise. My body is not co-operating right now, so I'm trying to jump-start my will power.

Thinking of you again tonight.

Sharon

Kate J said...

Beth, yes "stubborn" is a compliment (when it comes from me, at any rate) because you're stubborn - maybe unyielding would be a better word - in your determination to live life to the full, brimming over and beyond, and to be true to yourself, while sharing your most intimate, embarrassing and painful thoughts and feelings with a bunch of people who are total strangers... including anyone who just stumbles upon your blog. But who have somehow become your friend. That means you are either totally arrogant... OR an utterly courageous and honest person.
In my personal opinion, your blog is what the internet should be, what it was meant to be.
I don't know the back-story to this "anonymous" and whether there are more than one of them: truth is more important than entertainment... but you manage, brilliantly, always, to combine the two. That is art.
Love and peace...

JaneB said...

Kate J said "truth is more important than entertainment... but you manage, brilliantly, always, to combine the two. That is art." And it is great teaching. You - all the yous who have written here - are a wonderful communicator - no-one who reads here will ever be quite the same, think quite the same, as they did before coming here.

Yes, it would be wonderful if you could come and lecture here!! Plus we could have some of those mad academical conversations that make perfect sense to those inside them but make everyone else look at us funny and sidle away in case our madness is catching...

Perpetual Beginner said...

Dear Beth,

You don't have the job of entertaining us or making us comfortable. You, yourself are the gift you bring. Most striking to me over the time I've been reading your blog is how distinctive your voice is. Even on days when you're clearly having trouble, when vocabulary or grammar, or self-control slip, I could never mistake your writing for anyone else's.

I got your most recent postcard. It amazes me how many girls with swords/weapons you manage to find. Every time I get a card from you, it makes my whole day.

Human beings don't much like change. Some more so than others. Agencies tend to like change least of all. They don't just want to know when you (or anyone else) will die, but how. If they could schedule you for 2:30 on a Thursday, six years in advance, they would. Slots, categories, and advance scheduling rule the world of such places, and the minor fact that they're dealing with suffering people loses any import. Which, inexcusably, increases the suffering of the people they're supposed to be helping.

Anonymous said...

There is no magic when on Monday I can't hold up my head or move it and on Wednesday I go to Badminton.

Oh there is. It's the magic of the human will. Your will.

Perhaps also the magic of learning to rest. I hope so.

I've never quite understood why some people feel that illness has to be earned through unrelieved misery - as though intermittent misery did not suffice. Or why they are unable to comprehend that misery may be a necessary and therefore worthwhile price for joy. Or that life is precious because one lives it, not because one has it.

One thing you do, Beth, is remind us of that. Your truth is precious.

Raccoon, Cheryl, thanks. I took no offence. If I hide my heart behind anonymity, I expose myself to suspicion.

Jemma Brown said...

Hey Beth

I'm Jemma Brown and was on the Ouch guest blogging thing at the same time you where, its compleatly fine if you don't remember me.

I have been reading your blog ever since the Ouch! project but I don't think I have ever left a comment before (sorry), I'm not very good at leaving comments!

Your post has helped me today Beth, talking about changes, I have just ordered my first ever walking stick, I have a deterating bone condition (in addition to being VI and having some MH issues), its not going to kill me but the recent sudden change in my condtion has been hard to take.

I am aware it probably sounds trivial but at the age of 20 I find the idea of having to rely (at least in part) on a stick to get around tricky to deal with. I'm scared of what people will think, and fed up because it means I am getting worse.

But your words are so wise and so right, change happens, I don't need to be afraid of who I am or what the future will bring for my disability, its just another change to adapt to a new normal, and there will be more changes in the future, some will be good and some will be bad, I will get through them all, and beat them.

I hope you don't mind but I have decided to stop being such a wuss and write about the stick on my blog, I'm going to link to this post and I hope you don't mind!

Maggie said...

Hi Beth,
It is nice to see you smile in pictures!

Thank you! I got a completely awesome post card in my post office box today. It was perfect. As I strugle with daily challenges it was a nice ray of sunshine. I feel like such a wimp since my recent illness has kept me from responding to your blog. You face medical challenges much greater than mine each day yet you write and I come down with some weird, persistent, pneumonia like virus and I can't keep up... Can I say you inspire me?

Maggie said...

BTW, I forgot to tell you I laughed out loud about the internal bleeding comment. I got it.
Sending lots of love! Maggie

Miss Fairy Sparkle said...

Hi Beth, you ok sweetie - I check every morn to see how you are, and it's a been a wee while since we've heard from you. It's not a pressure thing - like you could you have not spoken to us thing - it's a 'do you need a wee hug right now, coz you are poorly at the moment'? message - you can have a couple, just in case. Laura xxxoooo(hugs)

rachelcreative said...

Beth

It doesn't really matter what 2 weeks is. I promised to write to you. Then write to you again. And again. And again.

Open-minded ... I am not guessing how things are or will be for you. I'm not expecting it to be this or that, to conform to how anybody else is, only to be whatever it is for you.

Sorry I'm bad at explaining :o)